The Antics of a Brittle Asthmatic

Bouncing

2012-01-25T19:09:00.000Z

I got home on Sunday! Hurrah! The discharge process is never swift, with meds taking ages to come up from pharmacy and doctor's letters needing to be done, but I did eventually get home in the late afternoon/early evening. My step-mum, B, and my dad picked me up and brought me home, saw me settled in at home and then let me get on with exorcising the hospital clatter from my head and cuddling the cat.

It's always a mixed thing to come home from hospital. On the one hand, it's fantastic to be free and to be able to immerse oneself back into ordinary life. On the other hand, there's a difference between being well enough to leave hospital and being truly well, so coming home can sometimes be hard work when you live on your own and you've gone having to do nothing to having to do everything. Given the choice, though, I'd always opt for coming home if I'm well enough.

I thought I was well enough to come home on Sunday. I was well enough ... except that I had started sneezing again on Sunday morning while I was still on the ward. No other symptoms, just sneezing, but of course that's potentially the sign of a cold, which is not a simple thing when there's severe brittle asthma to consider. So yes, I came home and all was well ... until Sunday night, which was very disturbed by coughing and wheezing, and snuffles and sneezes. I woke up very congested on Monday morning. Thankfully the congestion cleared soon enough and there's no longer any sign of a cold, but I've otherwise been rather unwell. I've got a very harsh cough; I'm persistently wheezy, even if not desperately short of breath most of the time; my nebs are giving me only five or ten minutes of really clear breathing before I feel it all tightening up again; my temperature has been up again (38.3C this morning) and I've had some rigors; I've had an intermittent thumping headache; and through last night, this morning, and early this afternoon I was retching but not actually vomiting as there was nothing inside to come up. All in all, I feel poorly.

I went to see my GP yesterday and was given antibiotics so I'm hoping they'll kick in very quickly. I've been back to the surgery today with a sputum sample that the doc asked me to put in, but it'll be a few days until the result from that are back. In the meantime, I've emailed J on Ward 29 to tell him that I may be bouncing back to them :o( I really don't want to. I'm sick of hospitals. I'm sick of being ill and I was hoping for a period of respite after my latest admission. I usually get at least a few weeks of relative health after I've been in hospital, but this time it was a matter of hours before I was starting to feel ill again. I'd throw my toys out of the pram if I had the energy ;oP

On a positive note, I am humbled by my church who holding a full day of prayer tomorrow just for me! Given my current state of health/ill-health it is very timely, but I am, as I say, deeply humbled. My vicar asked me to produce an information leaflet about myself with points for prayer included in it, and a photo, so I did that last week while I was still on the ward as I suddenly realised that M (the vicar) would need this a while before the planned prayer day. He came round yesterday to see chat through the day and see if I had any questions and he said that all the info sheets he'd printed off had been taken by folk on Sunday after the service so he was going to print off some more, and he'd also made bookmarks for people to take. These have my photo on and details of the times and venues of collective prayer tomorrow, although they also encourage folk to pray any time they can. It feels a little strange having this day for me, after all, I'm nobody special, I'm just me, but I appreciate the prayer day greatly. There will be various venues for people to get together to pray for me at various times throughout the day, and some people may well come round here to pray with me and for me at home. I was hoping to get to at least one of the other venues, but I'm not sure I'm going to manage that with being so poorly again :o( Yes, this day of prayer is very timely, and terribly, terribly humbling.

Progressing

2012-01-21T23:43:00.001Z

I'm nine days down the line of admission and I'm progressing well, surprisingly well. I felt rough with both the asthma and the 'flu at the beginning of the admission, but things have been going okay, and rather amazingly I'm hoping to get home tomorrow! It's a long while since I had an admission of under a fortnight, so to be getting home on day ten will be really quite something, though I know that I'll have to be sensible and take things easy when I get out of here. That said, I don't think it's going to be too difficult to take things easy as I'm still very tired, which is probably a combination of the asthma and the 'flu virus. As you most likely know, I quite often launch myself right back into life with little time for proper rest and recuperation, but this time I'll have to be sure that I do as I'm due back at university a week on Tuesday and it's going to be a heavy semester. I have two-thirds of a two year MA to do in two-thirds of one academic year...

For all that this admission hasn't been too bad in the scheme of things, it'll be a relief to get home. I know that I will have to pace myself, and that I will probably keep tiring easily for a while yet, but I'm definitely emotionally ready to get back to my own place. During the past couple of days I've felt the beginnings of the hodpits lurking within, not in a major way, but enough to feel their niggle every so often.

Yesterday I had a bit of a taster of how exhausting getting back into life this week is going to be as I had an appointment at the RVI for follow-up with the plastic surgeon after my Carpal Tunnel Syndrome op six weeks ago. Obviously I had to go to the appointment from here, which wasn't as straight forward as it ought to have been as Patient Transport Services (PTS) were pretty rubbish. My appointment at the RVI was for 9.45am so PTS said I needed to be read for pick up from the ward at the Freeman anytime from 8.15am. I'm not a morning person by any stretch of the imagination so 8.15am often feels like the middle of the night, especially when I've been poorly. However, the nurse came and woke me at 7.30am and I was up, washed, dressed, and ready for pick up by 8.15am as requested, but PTS didn't arrive until 9.55am - ten minutes after my appointment at the other hospital. Thankfully, the nurse here phoned through to the clinic and told them I was going to be late, and said that she'd call them again when I'd left the ward, but I'm not sure that would actually have been an awful lot of use to the clinic as PTS then went and picked up two other patients before finally setting off for the RVI. They then dropped off one of these other patients before they took me to the clinic I was due at, arriving for my 9.45am appointment at 10.40am! I was not impressed at all. However, I was thankful that I was still seen in clinic as they could easily have refused. In the end I was only in the consulting room with the surgeon for all of five minutes max, during which time he assessed the result of the surgery I've had, was pleased with progress, said I could drive again without problem, and told me I should have the other hand done now. That'll be within the next six weeks, but last time I was told this I ended up having the op eleven days later, so it could be almost anytime from now. I know the op needs to be done, so it's better to get it out of the way, I suppose, but I feel a little shell-shocked if I'm honest. No time for rest or a break from hospitals. I suspect it's contributed to the hodpits niggles. I hope I get at least a few days of relative normality at home before I have the surgery...

Now, on a completely different subject, one of the meds I take is a steroid nasal spray. For some reason (probably financial) the pharmacy here have this time sent up nasal drops instead of a spray. It's the same medication, just a different method of administering the drug. The trouble with drops and noses, though, is that drops go down and noses go up, so I was a little perplexed as to how I was supposed to get the drops into my nose. I came up with the radical idea of reading the patient information leaflet that comes with the drops, and low and behold there were instructions! Much to my amusement the instructions suggest that the patient stand on their head and then maintain their upside position for at least one minute! I'm in a room of my own so I haven't been able to see if others have been prescribed these drops, and if so whether or not they're standing on their head, but I haven't been aware of any other patients assuming a general upside down position for at least a minute, although one of the nurses did say that she'd been given these drops recently too and she'd had to get help from some of her colleagues to help her with the upsidedownness. The blasted nasal drops don't even come with a cushion, which you'd think they ought to if the manufacturers are suggesting those who use them stand on their head. What's more, I can tell you from experience that assuming an upside down position rather impedes breathing ability ... and then of course there's the POTS, which certainly doesn't agree with being upside down. I have been rebellious. Oh, no fear, I've been taking the meds, but I haven't been standing on my head. No, I've been much more refined and have, instead, been tilting my head all the way back before squeezing the drops into my nose. It seems to get them far enough back as they drop all the way down into my throat ... which is perhaps a little too far, so maybe they won't be doing the job... One thing is for sure, I won't be asking my GP to change my regular prescription, but at least the idea of a ward full of folk who can't breathe at the best of times now having to stand on their heads to administer their medication made me smile :o)

Anyone for a nasal drop?

Not as planned

2012-01-17T22:09:00.001Z

I was hoping to post an update last Thursday, but it didn't happen because I had a visitor just as I was about to set to task. So then I determined that I'd do it on Friday instead, but nothing went to plan on Friday and after a week of struggling on at home with what turned out to be 'flu, I ended up in hospital.

As I say, the lurgies I've had weren't 'just a cold', but 'flu, and for all the wishing in the world things didn't settle. I was reluctant to go to my GP partly because I know there's nothing a GP can do for viruses so there's no point in going to the surgery and infecting everyone there, and partly because I was pretty sure that the effort it would take to get to the surgery (even in Taz) would set the lungs off into a catastrophic state.

Late last Thursday night I was a little anxious that things weren't improving (in fact I got rather cyanosed on moving from the sofa to the bed - a very bad sign), and I was very aware that the weekend was fast approaching and that medical services reduce significantly over the weekend. I compromised with myself and decided to phone the GP surgery in the morning and get a telephone consultation with the doctor. I somehow managed to wake myself up with the alarm at 8.30am on Friday and set about the task of getting through to the surgery, but as soon as the lines open they become almost permanently engaged, so it took me 7 minutes to get through, by which time the receptionist told me that there weren't any telephone consult appointments left for that day. She went on to say that there were, however, lots of contact appointments at the surgery, so there'd be no problem if I could get up there. I explained my predicament of not being horrendously short of breath at that precise moment (although she interjected saying she thought I did actually sound very breathless), but I was concerned that getting myself to the surgery would set my lungs off big time. 'Oh,' she said. 'In that case, all I can do is to get the on-call doctor to phone you up in the next 20 to 30 minutes.' Now I don't know about you, but to me that sounds rather like a telephone consultation, which is what I'd originally asked for... 'Yes, that's absolutely fine. I'll keep the phone by me.'

The doc phoned back within twenty minutes, and I immediately knew that I'm far too frequent a customer at the surgery as she greeted me with, 'Hello, Becky? It' M. Dr P.' First name terms. She didn't even call me Rebecca, as on my notes, but Becky because she knows me so well (and I always sign off cards, letters, etc that I send them as Becky, so they know that's what I like to be called). Anyway, the conversation was relatively brief. Dr P could tell that I wasn't great, although not in crisis, and she said that one of the things that concerned her was not just that I'd been struggling on at home on my own with 'flu for the past week, but also that I was phoning them for advice, which I hardly ever do. That, she said, meant that I was concerned, which in turn made her concerned. I saw her point. She fairly quickly decided that I ought to go to hospital, and when I suggested that the exertion of this might set things off, she came back to me with, 'In which case you need to be there, don't you think?' Again, she had a point. Dr P tried to placate me with the suggestion that I may just be kept in hospital for a few hours while they observe me, but I knew that once I was in the hands of the medics I wouldn't be going home any time soon.

'So do you want me to call you an ambulance then?' Dr P asked.
'No, not really,' I replied, with the edge of a joke in a my voice. 'Could you maybe see if Ward 29 have a bed first?'
'Okay. I'll phone the ward, speak to them there, then call you back.'
'Alright.'
'And Becky?' She called down the phone just as I was about to hang up
'Yes?'
'Pack a bag, because you're going to hospital whatever.'
'Oh. Okay.' So disappointed, but I knew she was right. I knew I needed to be going to there really, even if I didn't want to.

I didn't actually need to pack a bag as I keep one packed and stocked all the time, but I did need to think about brushing my teeth, getting meds together to take with me, getting the last few 'luxuries' such as mobile, kindle and book, letting my mum and W know, and then maybe changing from pyjamas to clothes. I managed a few of those things before the doc called back to say that I was in luck, Ward 29 had a bed, she'd called a 20 minute ambulance, and she hoped it would be an easy and short admission. She is very lovely, and most importantly very good.

So here I am on Ward 29. To be honest I've felt like something of a fraud because I wasn't in my usual state of total desperation when I arrived, but I actually don't think I would have made it through the weekend without going splat, and I have been on the aminophylline infusion ever since I arrived. As one of my friends who's a GP said when she came to visit me, 'You're not a fraud just because you haven't ended up in ITU this time. Most people don't go to Intensive Care when they come into hospital.' Ah, yes, good point, S, good point. So I'm not a fraud, and I know it really, and of course I wouldn't have been kept in or put on the aminophylline if I were, but it makes me think about how used I have become to being desperately ill when I usually arrive in hospital...

I am mending. I'm still on the infusion at the moment, but we're hoping to try to get that down in the next couple of days. My temperature has also been much more settled today, and whilst I'm still a bit snuffly, I'm doing okay. This might turn out to be a shortish admission for me :o) though of course I'm saying that ever so quietly so that my lungs don't hear and don't go getting any ideas about acting up.

As seems to have become the way of things during admissions over the past couple of years, I have once again swelled up immensely with fluid retention. Aminophylline is meant to have mild diuretic properties, but it appears to have had the opposite effect with me ever since the POTS started. I am currently gargantuan. I am whale-like, and the only relief is that, despite my marine animal appearance, I don't yet appear to have developed a barnacle problem.

Below par

2012-01-10T00:04:00.001Z

It's the season for lurgies. There are a lot of them about at the moment, and although I've done my best to avoid them I appear to have picked one up somewhere along the way. It's not a major lurgy, presenting with slight coldy symptoms, a high temperature, and a hacking cough. I'm sure it's viral, and most likely a cold of some kind, but there's no such thing as 'a simple cold' when you have severe asthma and I'm suffering. My lungs are very unsettled, with nights being particularly bad and I'm not getting much sleep at all, despite lots of nebs and being propped up.

My peak flow was 180 this morning. It's been worse, a lot worse, but this doesn't bode well, and I'm a little nervous. I'm at the stage where I'm not too awful if I don't move around, but as soon as I start to do anything I'm very breathless and wheezy. Actually, I'm pretty wheezy most of the time, but it's a low-grade wheeze that I'm so used to that I don't notice too much until it starts to interfer with things; things like sleep, or breathing after a coughing fit, or getting comfy on the sofa.

There's nothing I can do at the moment but take as much care of myself as I can and keep up with the nebs. I'm on maximum meds I can have 'in the community', as yet there's no call for antibiotics, and I'm not at the point of needing hospital. However, I did go up to the ward at the end of last week for a portacath flush, when I was already below par, so the Charge Nurse knows that things aren't great, although things have deteriorated since then. I'm really hoping that I can stave this off and get through without hospital, but I'm not 100% convinced I'll be that lucky. Just so long as I can get to the Nigel Kennedy concert I'm supposed to be going to on Wednesday, and Lord of the Dance that I'm meant to be going to on Friday. Oh, and if I end up in hospital after that then a short admission would be good because my MA picks up again at the end of the month ... I have a feeling that I'm asking too much :o(

Review of the Year 2011

2011-12-31T17:33:00.003Z

Time for some reflection on the year that has past and a few questions about the year that is to come:

1. What has been your biggest achievement this year?
Getting my degree and my Post Grad Certificate, and doing so well in them both.

2. What made you laugh most this year?
I can't remember specifics, but I suspect it was my two older nephews, O and D. They always say and do such delightful things.

3. What unfulfilled hopes do you have for this past year?
To lose weight...

4. What has been your favourite/most listened to piece of music this year?
I've listened to Bellowhead's 'Hedonism' CD a lot.

5. What was your best holiday this year?
Either my curtailed week away in Lancashire with my friend O in January or the few days I had in Yorkshire with family in May.

6. What new skill, if any, have you acquired this year?
I'm not sure... I'll have to think about that one...

7. What's the best book you've read this year?
I've read a lot this year (28 books - I keep a diary of all the books I read), but perhaps the best one has been 'Three Men in a Boat' by Jerome K. Jerome. I read it on the advice of my older brother, M, who read it at the beginning of the year.

8. What has been the biggest challenge of this year?
My health, or rather my lack of health. It's a continual challenge.

9. What is your happiest/fondest memory of this year?
Hmmm, there are a few possibilities: my graduation; my graduation party; and the birth of younest nephew, J.

10. Of what one creation of the past year are you most proud or pleased?
Probably the Japanese-style cross-stitch of two swallows that I did. It was more intricate than I'd first thought, with a lot of fiddly bits, but I am very pleased with the result and have it hanging in a frame on the living room wall.

11. What new hobby did you take up/old hobby did you reinstate this year?
Hmm...well, I've started learning the ukulele, although progress has been halted since being in hospital in October/November and then having hand surgery. I'll take it up again in the new year.

12. What one thing would you really like to do next year?
Have a proper holiday without interruption by illness.

13. What was the saddest thing of this year?
Definitely my younger step-brother's suicide. I miss Nn so much and think about him a lot. It's all so sad...

14. What has been your best discovery of this year?
That I can do it! I have done it! I can achieve academically!

15. What news story of this year has had the biggest impact on you/do you most remember?
There has been so much that has happened in the world this year, but the things that I most remember or had the biggest impact on me are either the Japanese tsunami/Fukushima disaster and the 'Arab Spring'.

16. What's the best film you've seen this year?
I've hardly been to the cinema this year, but of the few films I have seen, the best was most definitely 'The King's Speech'. When the credits rolled at the end there was a standing ovation. Now that is a rarity at the cinema, is it not?

17. What was your best buy this year?
Hmmm... possibly my new mobile - a Samsung Galaxy SII - my first smartphone

18. What has been your best day out this year?
I've been to Beamish Museum with W three times this year and loved it each time. As it took all three times to see the whole place I will call it a collective day out and the best of this year.

19. If there’s one thing you did this year that you’d do differently if you could, what would it be?
Hmmm, tricky... I'm not sure... Maybe to make sure I stay in contact with all my local friends more as I feel that I've lost touch with some of them a little...

20. Is there anywhere you'd like to visit next year?
The south coast. Maybe Cornwall again.

21. Name one thing you did this year that you'd like to do again?
Graduate!

22. Who gave you the best advice this year?
My PGC tutors and supervisor gave me some excellent advice along the way.

23. What new skill would you like to acquire next year?
Am I allowed to say I'd like to learn to play the ukulele properly, even though I've already used a similar answer in a previous question?

24. What was your favourite TV/radio programme this year?
There are several possibilities: QI; 'Outnumbered'; or 'Miranda'. All on BBC telly.

25. What would you like to make more time for next year?
Writing. I mean writing when I don't *have* to write. Writing for publication, not just for courses.

26. What has been the biggest disappointment this year?
Not being able to attend the scattering of Nn's ashes because I was in ITU in Lancaster Royal Infirmary.

27. What was the best or most enjoyable concert you went to this year?
Probably the Bellowhead concert I went to at The Sage in November

28. What do you think was the best thing that you did for yourself during the last year?
Confront the staff and speak up for myself in RVI HDU, and then took the 'complaint' further on an unofficial level with the matron. It was difficult, but I'm proud of myself for having done it.

29. What is the biggest difference in yourself from this time last year?
I have a degree and postgrad certificate! :oD

30. What are you most looking forward to about next year?
Really getting stuck into my MA. Things got halted with my long hospital admission in October/November so that I had to pull out of the module I was doing. I think my next module starts at the end of January, so here's to getting stuck into that!

I'd love to see your answers to these/some of these questions. Go on, review your 2011 and share it with me.

Festivities

2011-12-28T16:00:00.001Z

I seem to have entirely avoided talking about Christmas and New Year here, but I have been very much immersed in the festivities in reality. I've actually been celebrating Christmas and it's joys since at least a couple of weeks before Christmas Day, so I thought I'd tell you a little about what I've been up to.

Back at the beginning of December, somewhere around the 8th, W and I had been planning on going to the Enchanted Parks event at Saltwell Park, Gateshead. We'd booked our tickets a while back and were looking forward to it as we hadn't managed to get to it last year because the weather was so awful (deep snow and temperatures of -9C). Unfortunately there were huge gales on 8th December and Gateshead council decided to cancel the Enchanted Parks event for that night. We were disappointed, but the disappointment was short-lived as we were offered alternative tickets for the Saturday evening.

I met W outside the park, having gone in Taz on the bus. This made much more sense than W traipsing all the way over to Newcastle and then coming on the bus with me as she lives not too far from the park. I hadn't been sure how long it would take me to get there on the bus, and in fact I was a little early, but I sat chatting to the nice folk manning the gates while I waited. You could see from the outside that something was going on in the park, and the sky above the big field was lit with searchlight-like strobes that made me think how things might have been during WWII ... perhaps made all the more evocative by my reading a book at the time set during WWII.

Anyway, W arrived and we made our way into the park, which was far from war-like. The main path up to the ticket office had its trees lit in multicolour, and there was a sense of party and celebration from all who headed up towards the event.

The event was a show of light and sound and sculpture, taking the viewer through the darkness of the park and surprising us with what was presented. Here are few of the highlights:

These snakes were attached to a huge head made from a tree stump/root. They were a kind of representation of Medussa, and there was some eerie music eminating from the surrounding area.

The old building in the middle of the park was opened up for refreshments. We didn't make use of the refreshments, but we did watch as the projected kalaidescope lit the building outside, and the patterns changed as people queued up with their selection of shapes to be shone onto the walls.

The bandstand was dripping in lights and looking magical in the darkness.

A fabulous ice sculpture with changing colours. When it was lit orange or red it felt wrong that it was cold to touch. All my senses were expecting heat, even though I knew it was ice. I loved this sculpture - probably my favourite piece in the event.

Although I did also very much like these bird cage-like sculptures hanging in the trees as well.

Time for a light tea, perhaps?

A selection of the lit trees and foliage from around the park.

It was a very enjoyable evening, and thankfully not too cold. However, Taz hadn't been completely charged up when I'd set off as I'd gone out earlier in the day, so I almost didn't make it back. Taz's battery indicator was flashing on one red bar by the time I got home and I nearly came to a stand-still before getting home. Thankfully turning Taz off when on the bus allowed it enough of a break to see me home and parked up in the living room, but it was a very close call, and Taz only just crawled into place.

So that was the Enchanted Parks.

On 16th December W and I had Christmas together. She came over to my house in the afternoon and we had Christmas dinner consisting of a vegetarian loaf thingumy I'd made with lots of sagey flavours, and of course we had all the roast dinner accompaniments - roast potatoes, roast parsnips, carrots, sprouts in sage and lemon butter, and homemade crab apple jelly. This was followed by a time of present swapping and 'slump and grunt', before W prepared pudding in the slow cooker and we went out to Gibside in the evening. Gibside is a National Trust property, and every friday night since the summer they've apparently been doing a beer tent and open fires between 6-9pm. On 16th December they also had carol singers and had a stand for hog roast and mulled wine. Neither W or I were up for the hog roast (I'm vegetarian, I'd probably have been allergic to it anyway, and both of us were stuffed after Christmas dinner), but we did have a drink - I had a Fentiman's lemonade whilst W had a half pint of Legless Santa :oD We sat around one of the fire grates, warming ourselves from the icy cold (we had a white Christmas that day) as we drank our drinks and soaked up the atmosphere, listening to the carols. We were only there for about an hour, but it was very festive and a lovely thing to do on our Christmas Day together.

When we got back to mine we had just enough space to squeeze in our chocolate puddings with melty middles. That is that the chocolate puddings had melty middles, not us ... we had rather bloated middles from all the yummy food. Unfortunately we had both forgotten to buy either cream or ice-cream to go with the puddings, but W had the fantastic idea of drenching the puddings with Bailey's instead. Marvellous! Delicious! Very, very scrummy!

On 21st I came up to Edinburgh to have actual Christmas with my mum and step-dad. I've been having a very lovely, very quiet, very relaxed time. To be honest, I haven't been 100% well (when am I these days?) with some mild lurgies that I think I picked up at the carol service at church on 18th - which was fantastic, by the way. My lungs haven't been very happy, and I've had very disturbed sleep with lots of coughing and wheezing every night, but I've been very well looked after and have thus far avoided needing any medical intervention. I think I've got through the worst of it now, so hopefully I'll be able to stay out of hospital throughout this lurgification.

I'm going home today. My train is at 9pm. I'll be sad to go home as I've had such a lovely time here, but before I go I get the pleasure of seeing my older brother and his family as they are about to descend on my mum and J for five days and we have a few hours of cross-over time. I'm sure it'll confuse O (5) and D (3) no end that I'm here, as they found it hilarious when I told them that I was their daddy's sister, so they'll probably find it difficult to comprehend that Grandma is also Aunty Becky's mummy.

Actually, I'd probably better sign off before they arrive. They're due almost imminently, so I shall brace myself for an invasion of boystrous energy.

Next stop, New Year's Eve at a friend's house. I think it's going to be a relatively quiet and civilised evening ... far from what I expect of this evening before I head off home.

In hand

2011-12-24T01:58:00.000Z

I have been a bad blogger. I apologise profusely, although to be fair, it hasn't been easy to type much over the past couple of weeks because of the surgery to my hand. However, that is now healing and typing is much easier than it was.

For the first week after the carpal tunnel op I had to wear a sling, which made life trickier than usual, especially as I'm right handed and the surgery was on my right hand. The sling kept everything rested though, and helped the swelling. However, I was naughty one evening, took my arm out of the sling and tried to use some nail clippers with my right hand, with the consequence of a great deal of pain, a scream that probably woke my upstairs neighbours, and very little success with cutting my nails. I had to dose myself up with analgesics to get any sleep that night and the pain was still much worse in the morning than it had been before my attempts at nail clipper usage. I learnt through my stupidity though, and haven't tried anything quite as daft since then.

Ten days after the op I had to go back to clinic to get the wound checked and the dressing reduced. All went well and the scar seems to be healing well, although the surgery site is still fairly swollen. I'm not surprised as it's still only a short time after the op, and full healing can take several weeks. It was a relief to get the big bandage off and replaced by a much smaller, support bandage that I was told to keep on for four or five days. After the nail clippers episode I decided to be good and do as I was told. I left the smaller bandage on for four days and then thought I'd see how it went, but my hand - in particular my thumb - felt very precarious and quite painful, so I put the bandage back on for another couple of days, only removing it yesterday. Since then I've intermittently worn a Tubigrip support bandage, mostly when things have felt unstable or been getting very tired an achy, but I think it's also good to let the air get to the scar and be able to moisturise the scar frequently too. It's odd how dry my hand has got, and I don't want the new skin getting so dry that it cracks.

Obviously there's still a fair bit of healing to be done, especially inside, but I'm gradually getting a bit of strength back in my grip, and although there's some internal tightness and stiffness, movement is generally good. It's quite amazing what can be done. Best of all, I've been pretty much free of carpal tunnel syndrome symptoms :o)

Just before I had the surgery I asked how long it would be until I could drive, and the surgeon said not for at least ten days and then it would depend how things were going and what was said in clinic. To be honest, I was surprised it was as little as ten days, and even more so as those days wore on. I came to the conclusion that I didn't think I would be safe to drive with such a weak grip even if I was told in clinic that it would be okay, so I resolved myself for at least a couple more car-free weeks. As it turned out, I was told in clinic that I wouldn't be able to drive probably for another four to six weeks when I'm seen in clinic again by the consultant on 20th January. This is longer than I'd anticipated, but it's fair enough.

However, when I am given the all-clear to drive again I will be looking into replacing my car. As I explained at the beginning of the month, I have a Motability car, which was new only last February, but my needs have since changed and I now definitely require one in which I can get my electric wheelchair. I hadn't been able to find any information on the Motability website about the possibility of doing this before the three year contract was up so didn't know if it was possible. I contacted them first through email and subsequently had a very helpful conversation on the phone. It turns out that it is possible to change my car before the contract on my present car ends as it is due to a change in needs, and as this is the first contract I have cancelled then they will waive the £250 fee. Unfortunately I lose the right to the £250 bonus for looking after the car well during contract, but that's not unexpected.

One of the difficulties I face is that Wheelchair Accessible Vehicles (WAVs) have a much bigger down-payment than I can afford, and of course there's also the cost of any added adaptations I may need such as a lift for the wheelchair. However, there may be the possibility of some grants available through Motability for both the down-payment and adaptations.

I've been sent the details of the various 'converters' - the folk who convert possible vehicles into WAVs - and been told to contact several. Apparently most are national companies so I needn't stick just to those who are local, but instead discuss my needs with a variety of them who will then advise what they think I may need and will bring possibilities to my house for me to test drive. Excellent. After I've done that, I'm told I need to speak to the people at the Motability grants department and tell them what the converters have advised and what my preferences are. Grants are means-tested so I'm guessing there'll be lots of complicated forms to fill in, and I don't know how much of the down-payment or adaptations will/can be paid for by them. I've also been told that the grants department won't always give money for the car that you want, but rather what they and the converters deem is suitable, which I'm guessing could well be less than what you'd like. However, if it maintains my independence then any suitable WAV has to be better than none.

I'm still loathed to part with my lovely Vauxhall Meriva, and I'm having to make myself think about the positives of getting a WAV. I cherish my independence and this is a means to keeping it. That's what Motability is about at the end of the day, so I remind myself of that all the time that I'm looking into replacing MacTavish (my Meriva). I also console myself slightly with the thought that I don't have to part with him immediately, because even after I've done all the hard work of finding the best WAV for me, and applying for grants, and ordering the car, I'll still have to wait between twelve to sixteen weeks before I get the new car. It's looking like it'll be late spring or even early summer before I get a WAV, so I may have come to terms with parting from MacTavish by then.

I can't do anything much about it at the moment anyway, because I can't drive at all until my hand is healed and I get the driving go-ahead from the surgeon. There isn't a lot of point in doing a great deal of research or contacting WAV converters until I can actually test-drive some vehicles ... although I might start looking into the basics of boot opening heights against the height of my wheelchair so that I have a bit of an idea of what to look at when I contact the converters...

Ouchy

2011-12-09T23:30:00.000Z

Two weeks ago I had an appointment at the Plastics Hand Clinic, which isn't a clinic for those with plastic hands ;oP but for plastic surgery on hands. I find it a little odd that it's plastic surgeons who deal with carpal tunnel syndrome, but they are and I've seen the plastic surgeon a few times for CTS.

A little while ago I had nerve conduction tests on my hands, which wasn't very pleasant - bolts of electricity being shot through your arms and hands - which was supposed to detect the presence of CTS. It didn't. My results came back normal, but as my symptoms were still indicating CTS, the surgeon thought he'd try a second shot of hydrocortisone directly into the carpal tunnel. The first shot I'd had the first time I'd been to clinic had been given by one of the registrars and had actually made things worse because he'd accidentally hit the nerve with the needle as he'd gone in. I had shooting pains through my hand and fingers, which continued for ages and made the tingling and numbness symptoms worse. The consultant gave me the second injection with no negative consequences, and in fact (and as hoped) it helped the symptoms for a while. Numbness, pain, tingling, weakness etc all returned in the end, and the consultant said this, and my history, confirmed diagnosis of carpal tunnel syndrome despite the negative nerve conduction tests. Apparently false negatives are quite common.

So when I saw the consultant in clinic two weeks ago he offered me surgery to release my carpal tunnel. I'd asked what kind of time-scale I might be looking at for it, and to my surprise he'd said within six weeks, or maybe even before Christmas if I was lucky. I mentioned that it'd be a bonus if it were before Christmas as it then wouldn't interfere with my studies that will be resuming soon into the new year.

On Wednesday or Thursday last week (I forget exactly which day), I had a call from the hospital telling me they'd had a cancellation and if I wanted it I could have my op on Tuesday 6th December! No chance to get used to the idea of having surgery (even though I'd known it was likely), but I took the opportunity. Mum was coming down on the Monday anyway, and although she'd originally planned to go back home on the Tuesday, she was able to change her train ticket and stay until Wednesday so that she could be with me through the op/post-op period.

The surgery itself was done under local anaesthetic, which the senior registrar who did the op said would 'hurt like buggery.' He wasn't wrong, but the theatre nurses were good at trying to distract me and we talked about the 7th Harry Potter film while I was painfully having my hand completely numbed. Now for all that I've had some big difficulties at the RVI in the past (some of which I've written about), on this occasion they were all great. They were very careful and thorough regarding my allergies and asthma, and even though the op was done under local anaesthetic they had an anaesthetist hanging around and scrubbed in just in case I did anything 'exciting'.

I think I was running on adrenaline through the operation, and because I hadn't had much time to get used to the idea of needing surgery I was fairly relaxed about it all. The staff were chatting with me about all sorts of things, including the book I'm writing about my asthma, but the surgeon also told me a little bit about what he was doing, though I have to say that this was after he'd seen me glance for a few seconds at what he was doing. He was teaching a junior doctor at the same time, so on the couple of occasions that I asked a question the surgeon asked the junior if he knew the answer and then got him to explain.

Anyway, the surgery went smoothly, and despite the negative nerve conduction tests, the surgeon said that the ligament was thickened and very tight so surgery had been the right thing. I'm so pleased that I haven't been through all this for nothing, that's for sure, because once the local anaesthetic wore off - in the middle of the night - it was all very painful. The pain's improving a little, but I'm still needing regular codeine and paracetamol (which I'm sure my liver isn't liking, but pain control is my prime concern right now), and I've still got my arm in a sling until next Tuesday.

It's tricky being one-handed, especially as I'm right handed and the op was on my right hand. Driving Taz isn't easy either as I'm having to use my left hand for the controls on the right, so I'm having to twist slightly in the chair. It's not so bad for a short while, but it gets uncomfortable after a bit. There's also the added thing of not being so precise in my use of the joystick when I'm using my left hand, so there's potential for a lot more chaos than usual...

Things will become somewhat easier when I can have at least partial use of my right hand again. As I said before, that'll happen on Tuesday when I can keep the sling off. I then go back to clinic on Friday next week to get the stitches out and the dressing reduced, but from what I've read online it can take several weeks for fuller healing to take place. So long as the pain improves a lot before several weeks are up I'll be happy.

Getting about

2011-12-01T14:16:00.001Z

I got a new car in February, my second Motability car, and I love it, but I'm in the process of finding out if it's possible to change it before the three year contract is up. I'm loathed to change it as I love my Meriva, but I can't get my electric wheelchair into it. My mobility is rubbish these days, and I'm needing to use Taz - my electric wheelchair - more and more frequently. It's fine if I want to get out locally or even go on the bus into town, but it's no good if I want to go further afield. If I'm going away then there's the possibility of the train, which I have used on a couple of occasions now, and will be doing so when I go north for Christmas, but that's not enough.

In a couple of weeks time my step-mother is singing at Alnwick Gardens with the choir she's in. I want to go and hear and support the choir, but I know that I won't be able to walk that far or stand for that long. I could take my non-powered wheelchair in the car, but that means relying on someone else to push the chair. It's hard work pushing a wheelchair, and there aren't that many people I feel I could ask anyway.

Then there's the aspect of independence. I might not be able to walk much any more, but that doesn't mean that I'm ready to give up my independence. I'm only 37, and whilst there are many things that I can't do any more, or things that I always wanted to do but never will, there are some things that would still be possible for me to do if I had a car that I could get my electric wheelchair into.

I've been putting off finding out about changing my motability car. I don't want to admit to myself how limited life has become, but the time has come to face the truth. I need to see this as a positive step - as a means to maintain my independence - but it's not always easy to see the positive when it's on a background of increasing disability.

Repacking

2011-11-28T22:06:00.001Z

I started keeping a hospital case packed and ready for any emergencies several years ago. It was a big acknowledgement of where things had got to - that I need to be prepared for sudden hospital admissions - but it has made that aspect of admission so much easier. There's no frantic rushing around (as best as one can frantically rush when one can't breathe) looking for pyjamas or toiletries, or even trying to remember what might be useful in hospital. Okay, there are still things I need to gather in those last few minutes before the ambulance arrives, and I more often than not misjudge what might be useful, but at least that's only the extras, not the essentials. Although there have also been times when I've completely misjudged the whole situation, gone to my GP, knowing somewhere inside me that I'd be going from the surgery to hospital, but have still failed to take my hospital case with me, instead taking only a rucksack full of children's books, teabags, and cross-stitch. It's not that I'm in total denial at these times, but rather that my brain is addled by high levels of carbon dioxide and low levels of oxygen. Anyway, keeping a case pre-packed means that the essentials are ready to pick up and take with me, should I remember to do so.

Over the past couple of days I've at last been replenishing supplies in my hospital case. It's not a physically demanding task, but it is surprisingly emotionally taxing. Repacking is an acknowledgement that I'm going to need the case again, that I'm going to be desperately ill again, that I'm going to need to be in hospital again. Repacking reminds me of all my previous admissions, and those fights to stay alive. It reminds me of the temporary nature of life, of my life, and the certainty of death ... and the likelihood of my own death being through asthma. Most people don't think about their own death, and most people with asthma rightly don't have to consider dying from their disease, but such is the nature of chronic severe brittle asthma that these are realities in my life.

It took me a long time to get around to repacking after my last-admission-but-one simply because of the emotional strain of doing so. However, this meant that when I did repack it was when another admission was imminent. All the while I was packing I was hating what I was doing, because I hated what it represented, but in the forefront of my mind were the constant thoughts, 'Is this going to be the last time I ever repack my case? Is this attack going to be the last? Is my asthma about to kill me?' It made the whole thing even more difficult and reminded me that, should I survive, I definitely need to make sure I replenish supplies before the crisis looms, so that's what I've been doing. It's still stressful, and it still stirs up all those thoughts, but I can distract myself with other aspects of life that are going on, and I can remember that there are aspects of my life that aren't all about asthma.

Re-engaging

2011-11-18T23:41:00.001Z

It's taken me a while to get back into life after my most recent hospital admission, probably because it was such a long one, but I'm getting there now. When I first came home I was feeling quite overwhelmed by the world, having spent most of the previous four weeks in one small room because of being MRSA positive. I found that almost everytime I left my flat I'd begin to feel very emotional, and on several occasions was almost in tears simply because I was doing something normal. I was alive. I'd survived the asthma attacks (somewhat surprisingly), and was back in the world where people try not to think about being ill or death. One day last week I was in Tesco when I suddenly felt really tearful at the normality of checking a box of eggs for broken ones. It was almost too much, and part of me wanted to abandon my shopping and come home. I didn't. I moved on to the milk and instead nearly cried over the bottles as I considered the normality of checking expiration dates.

It's odd how emotional it can be to come home from hospital after a long admission. I suppose it's partly the relief of having survived another severe attack, and this time there were various complications along the way that added to that relief. Coming home can be exhausting as well, though, so perhaps some of the emotion comes from that too. I mean, when you're in hospital you don't have to do anything except the hard task of get well (or relatively well) and then stay stable. When you get home you have to maintain what stability of wellness you've achieved, hopefully improve further, and do all the day-to-day living things like meal-planning and prep, getting drinks, getting dressed, shopping, maintaining the home. It's wonderful to be able to do these things, and to have the freedom of being home, but it is also exhausting and takes a fair amount of getting used to again.

I tend to throw myself back into life when I get home from hospital, often to the dismay of friends and family. In part this is because I have so many hospital admissions, and so little time between them, that if I had 'recuperation time' then I'd only ever have that and time in hospital without any proper time for living a life. It's also the way I've learnt to deal with the trauma of being in hospital, and yes, each admission is traumatic even though I'm used to it. I am used to the routine. I know what to expect in terms of treatment and procedures. I know all too well what ITU and HDU are like. I know the usual course of my attacks. But I never get used to the uncertainty of my survival, the possibility that each attack may kill me. I never get used to the fear and sensation of suffocation. Each attack is physically and emotionally draining. Jumping straight back into things when I'm home is my way of making the most of life while I have it, and reaffirming that there is more to my life than illness.

That is something I sometimes struggle with - knowing that there's more to my life than illness. Sometimes I feel like I just bounce from one hospital appointment to another, to my GP, to my carers, to feeling ill, and back to hospital. There's been a fair amount of that even during these past two weeks at home as it seems that I've developed some problems with my liver, most likely as a result of long-term high-dose steroids for my lungs. Since coming home I've already been back to my GP once, had bloods taken by the surgery phlebotomist, been to the hospital for a scan, and been back to the surgery twice for blood results. It's looking likely that I have (non-viral) hepatitis, so yet something else to contend with, and probably another referral to another hospital consultant and therefore yet more hospital appointments and 'life' as a patient, rather than life as BeckyG. I'm hoping to get a better picture of things next week, and maybe find out a little more about diagnosis, prognosis, treatment (if any) etc.

All this liver stuff has certainly been making me feel rubbish, with pain and constant nausea, and more lethargy, and it might well be contributing to the water retention problems I've been having. It's been more difficult to throw myself back into life, but I've been determined to do what I can so I actually managed to get to homegroup (bible study group) on Wednesday for the first time in a long time. It was good to be there. I was tired, but it was a small group of people who know me well, and I was able to share some of my worries and concerns with them, and pray about them, and that was all a relief.

I also went to a Bellowhead concert on Monday night at The Sage. I love Bellowhead, though I find it very difficult to describe their music ... perhaps you could call it funk folk... Anyway, they're brill and they clearly enjoy themselves while they're performing. I'll post some photos of the gig when I get around to taking them off my camera. Actually, Monday night's Bellowhead gig went a long way towards helping me to feel alive again, like that kind of concert is what being alive is all about. It was fantastic, and come to think about it, I've been a lot less suddenly tearful since then too :o)

So yes, I am gradually settling back into life outside of hospital, albeit with some (more) health complications, and I am re-engaging with the world :o)

Home

2011-11-08T14:05:00.000Z

I'm home and it's fantastic! I got home on Saturday afternoon and didn't even have to wait long for my prescription as the fab doctor got it all requested on Friday :o) W came and picked me up after lunch, and she said she was glad to be the one to bring me home as she'd gone in the ambulance with me, so she saw the circle through. Bless her.

My lungs are so much better, but it turns out that my blood results are still showing a problem with my liver so I'm going to be sent an appointment for a scan as an out-patient. Now I don't know if it's this thing with my liver or something else, but I feel sick almost all of the time. Nausea's been a problem throughout this admission, and I've been taking extra meds for it, but the past couple of days I've been feeling more queasy than I was. Maybe I'm just more aware of it because I'm at home and trying to get on with other things. I could do without it though, especially as I'm hoping to get to my university class tonight and I'll have enough to think about just trying to catch up and have the energy to be there.

Speaking of university, while I was in hospital I got the results for my postgraduate certificate in creative writing. I got a Distinction! I hardly dared hope that I'd get a Distinction, even though I knew it was a possibility based on my coursework results. It feels great! I can hardly believe I've done it! It gave me a boost while I was in hospital, and now that I'm home and thinking about going back to uni tonight, it's given me another boost to get stuck back in to study. I just hope that I can catch up on all that I've missed.

Well I know this has been a short post, but I'm going to leave it here for now. I'm tired. I need to have a rest before I think about going out to univerisity. I just wanted to let you know that I'm home, it's great, and the cat has turned into a limpit >^..^<

Coming out of the hodpits

2011-11-05T01:07:00.001Z

I sent a text to my mother this evening in which I somehow misspelled the word 'hospital' as 'hodpit.' On reflection I thought this rather a good word that well describes the hospital-induced grumps, so I've decided to adopt it as such :o) Today has been a better day as far as the grumps have been concerned, so it could be said that I'm coming out of the hodpits :o)

One of the cheerier things about today has been the registrar saying that, providing I feel well enough, I can go home tomorrow! She initially said we'd see how I went over the weekend and think about it for Monday, but I then suggested Saturday. It turns out that my liver function tests (LFTs) went somewhat awry when I was on antibiotics for the chest infection (the doc didn't explain any further than this, but I think I'll ask out of interest), so they took blood again today to check that things are back to normal with that before they give me the final okay for home tomorrow, so I have everything crossed.

Although I haven't slept well for a few nights, with difficulty getting to sleep more than anything else, I had a slightly better night last night. I didn't get to sleep any earlier, but I think I slept more deeply once asleep, and I was left to sleep on in the morning as well. I suspect being a little less tired has helped me to come out of the hodpits too.

W and I had been planning to go to a fireworks display this evening, but of course I wasn't able to go in the end because of still being in hospital. W almost didn't go herself, thinking it would upset me that she was able to do something she knew I wanted to do, but in the end she did go and I'm glad she did - there's little point us both missing out on the fun. Anyway, W videoed most of the display on her camera and we watched it together on my laptop when she came to visit afterwards. The other thing we did was light sparklers in the hospital garden. I was sat there in my pyjamas and a blanket in my wheelchair, twizzling sparklers, waving them in the air, and calling out, 'hello' to all who passed by. It was great fun. Here's a very rare photo of me with sparkler in hand in the hospital grounds:

W also had sparklers, but she didn't join in the calling out of, 'hello' to strangers, though I think she enjoyed mine. I certainly had fun, and it definitely got me out of the hodpits :o)

Grumpy pants

2011-11-03T00:31:00.002Z

When the cat gets stroppy, which happens quite a lot with Psycho Kitty, Zach, I often affectionately call him Mr Grumpy Pants. The past couple of days I've been doing the typical 'pets reflecting their owners' thing and have been Miss Grumpy Pants. I'm just sick of being in hospital now, and every little thing has been niggling me and making me tetchy. Poor W has got the brunt of it, which she really doesn't deserve, but more than that, I just feel naff when I'm grumpy. I get fed up with myself for being grumpy, and of course that makes me even more grumpy. Okay, so there's plenty of valid reason for me to be fed up, but I don't like feeling negative and miserable, and stroppy. I let a smidgen of it out much more appropriately earlier this evening by having a couple of dribbly tears on one of the nurses, but nothing very much. They're so lovely here on Ward 29 - let me feel however I feel, are genuinely interested in whatever those feelings are, and know exactly how to handle each individual occasion. So this evening I got a hug, a glass of milk, and chat time.

A little earlier I was talking with one of the other nurses about my desire (and need) to get home. I'd told the junior doctor I saw yesterday that I was hoping to get home at the end of the week, but she'd been very non-committal because apparently my white cell count is still a little high, indicating there's some residual infection. I've been so poorly this time, and had such a major set-back after an initial improvement, that the nurse today thought that maybe the doctors would be a little more cautious than usual about sending me home. None of us want me to have another flare-up of infection and bounce right back, but personally I think I'll be fine to be going home as I'm not spiking any temps or anything.

In a bid to make headway home I came off the oxygen late this morning and have been pottering around the room a bit more than I had. I've had one or two periods of puffiness, but nothing major and nothing that didn't settle easily enough. Although I really want to get home as soon as possible now, I've resigned myself to being here tomorrow, but I'm hopeful for Saturday. The nurse I spoke to about it this aftenoon thought that might be realistic enough, and hopefully the docs will think similarly when I see them in the morning. I should be seeing the registrar and the consultant (not my consultant as he's away this week, but one of the others who I know very well), and they're usually guided by how ready I feel for home, so I'm gunning for discharge on Saturday - just in time for fireworks :o) although I won't mention that to the docs ;oP

Don't worry, I won't go pushing to get home if the doctors really don't think I'm up to it, but my white count wasn't massively high, and I'd go to my GP at the first sign of any reappearance of infection. I do need to get home now though. Even if I get home on Saturday, it'll be almost four weeks since I was admitted, and there's only so much getting better one can do in hospital. A certain amount of recovery comes when you immerse yourself back into life, and anyway, hospitals are fantastic places for picking up more infections, even simple ones like the cold I got that caused the chest infection and set-back I had the other week.

Yes, I need to get home. I need my own space and own surroundings, and I need my cat. I need to be able to process all that's happened, get my head around how poorly I've been (the nurse I was talking to this evening said that she's been really scared for me this time, and have scared all the doctors too), and also have the opportunity to grieve for a friend who died last week. Rachy was someone I'd initially met through the discussion boards on the Asthma UK website, but had got to know her well through another group and then through text contact. We may never have met in person, but we were still friends, and I'm missing her. I won't say anything more about that for now, because it's all a bit too raw and unprocessed, but I thought I'd let you know that it's something going on for me, and is contributing to my upset and general grumpiness.

Now I should probably try to sleep. I haven't slept well for several nights with my mind working overtime, even though I've been really tired. It won't be any good me trying to persuade the SpR and the consultant that I'm okay to go home if I'm both grumpy and looking exhuasted.

Three weeks and counting

2011-11-02T00:56:00.002Z

I've made it back to you at last. I'm still in hospital, and have been here for over three weeks now, but I do seem to be making much more steady progress now and I can see the possibility of discharge.

As you know, I had a slow decline this time round, and I was getting really tired with it, but things escalated quite rapidly on 10th October. In the early afternoon I emailed the Charge Nurse (J) on Ward 29 at Freeman to say that I thought I'd be heading their way soon, and a couple of hours later I was in resus in A&E at RVI after phoning Ward 29 and finding that they had no beds. As it turned out I wouldn't have lasted long on Ward 29 anyway as I went from resus in A&E to HDU in the Critical Care Unit at RVI, and was there from the Monday until the Friday.

I had a fairly horrendous time in HDU at RVI, which I can't say a whole lot about on here as those involved are being disciplined (albeit unofficially), but one night was particularly awful and caused me a great deal of stress. I'm sure the stress has contributed at least a bit to my slower recovery, although things were slow anyway, most likely because the decline was slow.

So I made it to Ward 29 at Freeman on the afternoon of Friday 14th October, and although I was still on the aminophylline infusion I was kind of doing okay. Saying that, though, something didn't feel right ... it didn't feel like a stable improvement, and although I was able to get off the aminophylline by the Tuesday (I think) I wasn't convinced of the improvement, and actually felt like I was getting a cold.

I was right. I did get a cold and the cold rapidly headed south to my lungs, giving me a none-too-pleasant chest infection. I had a barking cough, I was exhausted, I wasn't sleeping well, I was wheezing more and more, and by the next Friday I was in HDU in Freeman. Thankfully I only had 24 hours down there and was able to come back to the ward, but I was far from well and still very wheezy. It's taken a heck of a long time for the wheeze to settle and to begin to feel like I'm mending, but at last I think I'm getting there.

For the second time this admission the aminophylline is down - as of yesterday - and so far I'm doing okay. I was a bit tighter again this morning, and ever so tired, but things settled after nebs and then I slept the morning away and was woken for lunch. I'm still very tired, but it's been a long haul with a lot of stress and upset, and a big set-back in the middle that itself made me want to cry. The trouble is that crying can make my lungs tighter so I have to push the upset and stress to one side until it's safe to express it, but then I think others can be confused when it does get expressed as there may not be any particularly apparent reason for the tears when they come. For the most part the tears still haven't come yet for this admission, and I have a feeling that they won't until I get home. There's almost too much to process while I'm here, even though I have my own room (the benefit of being MRSA positive) ... I'm kind of numb most of the time ... just getting on with it ... almost afraid of touching the miserable bits, but I know that I will have to in the end.

I know that even what I'm writing here is probably coming across as emotionally detached. I also know that it wouldn't be so detached if I could write about what happened at the RVI, but I can't. Though I will say that what happened has left me feeling like I'd rather take the risk in the future of waiting at home for Ward 29 to have a bed, than end up back in ITU/HDU at RVI, even if that means I don't survive. However, the RVI ITU/HDU matron is on the case, has been as reassuring as she can be, and has told me that if/when I'm in her unit again I'm to have the staff tell her that I'm there. W has also said that if at all possible (i.e. if she's not working the following day), she will not leave me alone in the unit again. I think that's probably all I can say about it. Sorry to be evasive, but I feel I should be at least a little cautious about how much I say.

The next step is to get off the oxygen. It shouldn't be too difficult as I'm only on a trickle of 2 litres now, and as I've said, my progress does feel much steadier now. I've even been out for a proper trundle in the park today, with Dad pushing the wheelchair.

Nobody has yet mentioned home, but providing things continue as they are then I'm anticipating discharge by the end of the week, maybe Friday. In my head it's Friday, anyway, though I haven't mooted the idea with anyone yet either. I might do tomorrow. Actually, these days the medics tend to leave it to me to tell them when I'm ready for discharge, and at the moment I think Friday is probably realistic. Also, I have to get home by Saturday because the cat is terrified by fireworks so I need to get home to comfort him and most likely spend a large proportion of Saturday evening with his head stuck in my armpit as he tries to hide from the noise >^..^< Bless him. I miss him so much and can't wait to get home to him. Here's hoping Friday is doable.

Extremely briefly

2011-10-29T19:48:00.000+01:00

This is the shortest of short posts to say that I haven't forgotten or deserted you. I'm in hospital. Admitted on 10th October and still no sign of home. It's been rough, very rough, but I think I'm making better progress now. I'll get back to you with a proper post very soon.

A smashing time

2011-10-08T19:48:00.000+01:00

Some of my friends gave me a ukulele as a graduation gift. I've done a lot of music in the past, playing the violin, piano, and voice, and almost going to The Royal Acadamy of Music back in the mid/late '90s. However, I've never played the guitar, so the ukulele is a whole new venture, but my friends thought that it'd be an ideal instrument for me as it's light, low-energy, and easy to play sitting (or lying) down. I've only had the ukulele for two weeks, but I'm greatly enjoying learning it.

I went into town the other day in Taz - my electric wheelchair - to get some ukulele music and another book to teach myself as the book I'd previously bought doesn't give enough practise at the skills it teaches. I went to the main music shop in Newcastle city centre - Windows. It's a fantastic shop, and one that I almost lived in as a teenager with a love of making music. It's also in the most beautiful old arcade - Central Arcade - which was first built as a commercial exchange and newsroom in 1869, but then rebuilt and opened as an arcade in 1906 after a terrible fire.

Windows has been in Central Arcade since 1908, so only just after the redesigned arcade was opened, and because of its age, Windows doesn't have a lift at all. Most of the instruments and all of the sheet music are upstairs, so this made my quest to get ukulele music a little tricky.

I made my way to the counter at the far end of the shop, along the narrow aisles of the ground floor, past the expensive digital pianos and all the CDs and records (yes, they even have some vinyl!), and I asked the guy at the till for assistance from upstairs. No problem. All I had to do was wait at the bottom of the stairs, which were all the way back from where I'd come.

After a short wait a lovely young lady came down with lots of books she thought might be useful (I had explained to the man at the till what I was after), and also lots of advice as she plays the ukulele herself. Marvellous, and typical of Windows to have knowledgeable staff. I decided to buy a few helpful-looking books, and I followed her back down the narrow aisles to the till to pay. Still no problem ... until it came to leave...

There wasn't much space between the till and the end of the central racks full of vinyls and CDs; certainly not enough space to turn Taz around, so I had to reverse. However, I was reversing in a tight little space and not concentrating fully because a) I wasn't feeling too well; and b) I was trying to hold onto the rather large box of books I'd just bought in a carrier that was threatening to slip off my knee.

I reversed confidently into a set of free-standing metal shelves full of CDs, only now they weren't so full of CDs. I moved forward to disentangle myself from the shelves, but they had somehow attached themselves to the bottom of my wheelchair. The whole lot fell over. The lovely lady picked up all the CDs, and the grumpy-faced man who had earlier been on the till detached the shelves from Taz. Not so helpfully, he put them back to exactly the same place they had been, and when I then tried reversing again, I promptly crashed into them again. They were now rather bent. I eventually managed to turn Taz around and scoot up the aisle without damaging anything else. The grumpy-faced, and now grumpy-natured, man held the door open for me as I left.

I hope he read the sticker on the back of Taz. It reads, 'Chaos. Panic. Disorder. My work here is done.'

Slow decline

2011-10-06T00:32:00.001+01:00

When I was in London I picked up a bug. It started to go to my lungs, unsettling them greatly, and I ended up being given antibiotics by Dr H when I saw him in clinic on the Thursday before my party. I kept myself going for the party and had a great time, despite being below par. The antibiotics seemed to clear up any bacterial infection, but my lungs had already been set off on a downward slip and they're still going, but it's slow, very slow. I'm sick of it. I know that it's beyond the stage of doing a u-turn and getting better, but it's taking so long to slip that I'm getting very weary of it. I'm not too bad if I sit still, but as soon as I start to move I get very breathless and wheezy, and night times are rubbish.

I don't know what to do. There's not a lot I can do, which is why it's such a difficult place to be stuck. I'm not yet sick enough to be going to hospital, but I'm not very functional at home either. I've thought about seeing my GP, but there's little point as there's nothing they can do. I'm on all the medication they can give me 'in the community', and I'm nebbing as frequently as I can, and more.

I could email J on the ward and ask his advice ... but I know that he won't really be able to offer me anything until things go into crisis. It's so wrong that I have to wait for crisis before I can get help, but that's how things seem to be at the end of the medical treatment road. It's rubbish.

I'm tired of it now; tired of the slow decline. I just want it over, want it to snap so that I can (hopefully) fight through it, and then (hopefully) have a break from it for a few weeks. I'm tired. I need it over. I'm stuck.

Celebration!

2011-09-30T01:05:00.001+01:00

It's far, far too long since I last blogged. I'm sorry about that. I've been a tad busy celebrating my graduation. I had a big party last Saturday with sixty friends who I think (and hope) all enjoyed themselves with the help of an old friend of mine who plays the saxophone brilliantly and 'did his stuff' with a couple of his jazz-playing friends. Oh, and we also also had lovely food done by Cafe Bar One, who managed to cater around all my billions of allergies, and those of my friends with other allergies/intolerances, which include gluten, dairy, egg white, quorn, and a low potassium diet. Quite some achievement.

I hired the hall of St. Barnabas' and St. Jude's church - Barney and Jude's - which is the sister church to mine. Barney and Jude's hall was done up earlier this year and has gone from being quite drab and unremarkable to being lovely, welcoming, relaxing, and a great venue for a huge variety of events. I was looking for somewhere within my/my parents' price range when Barney and Jude's had just had its face-lift. We went to have a look and it was perfect with tables, sofas, a platform area for the musicians, a bar (usually used for tea and coffee, but less of that and more wine and beer at my party), a variety of lighting options, and all in a decent sized hall at excellent rates.

We'd booked the hall from 4pm so that we would have time to set up and decorate. At first this seemed like a long time, but actually it was just about right, although we'd had to take our party clothes with us and change in the toilets. It might've been nice to come home to get ready, but we couldn't work out when we might be able to fit in a trip back here as the drinks and glasses were being delivered to the hall at 6pm, the food at 6.30pm, and the party starting at 7pm. Before that there were banners to put up, photos to put onto boards and find places for, balloons to blow up, tables to move, light switches to locate (this took longer than you might think!), general decorating with party paraphernalia, and other bits and pieces. Mum and J did most of it, while I did the 'quieter' things so that I had energy for the party itself.

I had a fantastic time. I have some wonderful friends, I really do. I'm so thankful to them for coming and helping me to celebrate and for giving me such a wonderful evening. I'm reluctant to put up photos of the party on here because I haven't asked those in them if it's okay to do so, but I will leave you this evening with a couple of photos of the band:

The big event

2011-09-18T22:24:00.000+01:00

I've been away, and am still away at the moment, in London. I came down on Wednesday and have been staying with my brother, M, his wife, N, and my two young nephews, O and D. It's been an exciting time for various different reasons. Firstly, it was O's first week of school last week. He's taken to it easily, but D has found it more difficult at nursery without O there too as he's never experienced nursery without O. D has been the tearful one in the mornings, but apparently (and happily) he's been absolutely fine soon after M has gone home.

The next exciting thing is that it's D's third birthday next weekend, I brought his birthday presents down with me and gave them to him on my first evening here so that I could see him opening them. He's well into firemen and Fireman Sam at the moment - his party is going to be Fireman Sam themed - and I bought him a wooden fire engine and figures for his present. His brother O has had a toy fire engine for a couple of years, but D was desperate to have one of his own. I knew he was into firemen, but didn't know how desperate he was to have his own, and for the first ten minutes of having it he kept wrapping the box up in the birthday paper again, pulling the paper off, and shouting, 'Surprise!' He was almost shaking with joy, bless him, and at bed time he wanted to take it upstairs with him so he could look at it in bed. He then came skulking back downstairs, slunk across the living room floor, and threw himself on me, giving me an enormous hug. It was like he didn't have enough words to say thank you :o) Utterly delightful.

Now the main reason for me coming down to London this time, and my really big news, is that I graduated on Friday at The Barbican. I had the most fantastic day. My brother, M, came, my mum and step-dad came down from Edinburgh, and my dad and step-mum came down from Newcastle. There were also two people I've met through the course of my degree with the Open University, and the (grown up) daughter of a friend I've made through the OU but who couldn't come herself. What was also lovely was that another friend I've made through the OU - F - was graduating at the same time and was only one person in front of me in the ceremony, as we were both graduating with First Class Honours in Literature and our surnames are alphabetically close to each other. F lives in Edinburgh so I often see her when I go up there to stay with my mum. It was wonderful to be graduating with her, and we went together to get robed up.

The Vice Chancellor of the Open University is called Martin Bean. Each graduate was presented to Martin Bean - a very jolly Australian bloke - and I have to say that it does tickle me that I was presented with my degree by Mr Bean, even if it's not the Mr Bean.

After the ceremony I eventually managed to find my family again amongst the crowds, and after we'd had a coffee downstairs we made our way outside, hailed a couple of cabs, and came back to my brother's house, where we were greeted by N, O, and D. O and D had a little bit of time with Grandma, Poppa J, Grandad, and Granny B before going to bed, but once they were settled (and re-settled as they got up a couple of times, probably because of the excitement of so many family people around) the rest of us ordered Indian take-away for a celebratory meal. Of course, I couldn't have this because of my allergies, but M made me some wonderful stuffed peppers and potato wedges, and rather than joining them in the champagne they all had (it contains sulphites, to which I'm allergic), I had some lovely apple brandy with Appletiser. I do miss joining in with things like take aways and champagne, but there are some delicious alternatives, and what I had on Friday certainly felt like celebration food and drink.

My various parents have gone back home now, and I'm going home tomorrow, but I've had a wonderful time, a celebratory time, a very happy time. I have a lot of good memories to take away with me, and I'm looking forward to getting copies of photos from all who took them, include the official photos.

In passing

2011-09-09T16:36:00.000+01:00

Do you ever overhear snippets of conversations and wonder how on earth they fit into the whole? I was passing a couple of young men the other day as I trundled through the campus of Northumbria University on my way home, when I heard one of them say to other, 'I have a real hatred of shoe laces.' Was this a comment out of the blue? Was it part of a wider conversation about shoes? What does this guy hate so much about shoe laces? I was almost tempted to turn around and chase after them to ask. I resisted in the end, thinking that they might think I was stalking them, or at the least very strange. No comments from the back! ;oP

On a completely different note, I saw the most terrible thing from the bus window the other day. We were going down the main shopping street on the edge of quite a deprived part of Newcastle and I saw a young man, who I presume was the father, put a cigarette into a child's mouth. The child must only have been about 4 or 5 years old, and the 'father' was clearly instructing the child on how to light the cigarette. It was an awful sight. It's bad enough to see teenagers smoking, let alone very young children being plied with cigarettes. It made me angry, and so angry that I felt sick. I think I would go as far as saying I consider what I saw to be child abuse. What about you?

On the buses

2011-09-02T23:05:00.002+01:00

W and I have been to Beamish Museum three times this summer, most recently on Wednesday. It's a great day out - a 'living' open-air museum, covering a vast area, depicting life in the late 19th century/early 20th century in northern England. It's a fascinating place, lots of fun and great for all ages.

The first time, W and I went in my car, taking my attendant-assisted wheelchair. W pushed me around in it all day, and although she doesn't mind doing this, it is a heck of a lot of work, especially on the cobbles and up and down the hills at Beamish. The second and third times we went, W drove and I got the bus so that I could go in Taz (my electric wheelchair) - much better all-round, although it did mean a pretty early start for me.

I think the first time I went to Beamish in Taz was in late July. It means getting a bus from my house into town, and then a bus from town to Beamish, which is in County Durham and takes almost an hour on the bus. When the bus from town (28) arrived at the bus station the driver informed me that I wouldn't be able to get on the bus because the ramp was broken, but then it transpired that because this bus service is advertised as accessible, and it was the bus company's fault that this particular bus wasn't accessible, they have a legal obligation to get me to my destination. The bus company ended up paying for a taxi to take me from Newcastle to Beamish, costing them £28.80. I was told that the same thing would probably happen on the way back. The route is covered by the numbers 28 and 28A buses, both of which do a circular route, though ever so slightly different. As it turned out that day the weather was atrocious so W and I abandoned our Beamish visit after 4 hours of getting soaked, and the first bus that came was the 28A, the ramp of which was working fine.

I thought that the ramp on the 28 would probably have been fixed by the time we went back to Beamish on Wednesday, but it turned out not to be. Again the bus company paid for a taxi to take me from Newcastle to Beamish, this time costing them £15.50 (they used a different company). After a fantastic day together (about which I'll do another post sometime soon with some photos), W and I headed for the exit and the last bus (W waited at the bus stop with me before she drove home). It arrived, and it was the 28 with the broken ramp, so we had to go through the rigmarole of having the bus driver phone through to control to get them to sort out a taxi and to pass on my details so control could phone me back and let me know how long I'd have to wait. The call took longer than usual to come through on my mobile and when it did, control were ever so apologetic, but they couldn't get me a taxi as it was rush hour and all the taxi companies they'd tried were busy. Instead they were sending a bus from not-too-far-away Chester-le-Street to take me to Newcastle. A whole bus just for me!

While W and I waited for this personal bus service to arrive, a family of three generations came to the bus stop to find that they'd missed the last bus back to Newcastle. They weren't very happy. I explained my own situation and said that if they were sending a whole bus just for me then it'd be really mean of the bus company to refuse to take them too, seeing as I was going exactly where they wanted to go. We decided that we'd team up and they could chance it.

Then the bus arrived. Not only did I have a whole bus to myself, but I had a whole, bright pink, double-decker bus! All for me! Just me (so far as control were concerned)! Well the bus driver was a cheery fellow and he had no qualms at all about taking the additional passengers, and he let them all travel for free :o) I get free travel on the buses anyway as a disabled passenger :o)

But the saga wasn't over. No. Just as I was getting on to the private, pink monster-bus, the 28A doing it's last journey for the day to Chester-le-Street pulled up at the bus stop and said that control had been on the radio saying that we may have to swap buses because they suddenly realised that the double-decker wouldn't be able to get under a low bridge on the 28's usual route. It would've made sense to swap the buses over as there were only 7 of us on the pink monster-bus, whereas the single-decker 28A was jam-packed with people standing in the aisles. However, it was decided that the pink monster-bus would divert from the usual route of the 28, at first going all round the houses and then onto the A1, so as to avoid the problem low bridge.

After setting off, the driver put some lights on for us inside the bus, then he started playing with them, flashing them on and off saying that it was party time and he thought we should have disco :o) I was secretly glad when he didn't continue playing with the light switch as he drove us round some fairly twisty roads. Then he said that we needed some music, but he didn't have a stereo so someone should sing. Well the family of three generations had two very young children amongst their number, so they started off singing 'The wheels on the bus go round and round' :o) It was all very jolly, and totally, totally mad.

:o)

Rough Tenderness

2011-08-27T18:32:00.000+01:00

You interrupt my dreams, my violent dreams; the dreams that are my mind’s attempt at processing the violence my body has endured. I am sucked out of the image of a boy being murdered, and I am grateful.

I do not have the energy to open my eyes, but I know it is you stroking my arm. You touch me with a familiar uncertainty. You touch me with a question in your fingertips, ‘Does this hurt? I do hope not.’

Your skin is rough: worn from gardening, from jobs around the house, from picking at the bark on sticks you find on your morning walks in the park. The scratchiness prickles my arm, but I like your signature touch and rest in its tenderness.

I have had contact from many over recent days, but it has been the prod of a medic’s finger, the skimming of my chest with a stethoscope, the jab of a needle. Instead of this necessary invasion I have craved the gentle holding of my hand – a comfort in the fear. Now you are here, soothing the remnants of my anxieties with your presence, and the dancing of your hand on my arm as you struggle to find a bit of me that isn’t tied up in wires, and tubes, and needles.

I want to show you that I know you are here; to assure you that your touch is welcome. It takes almost more energy than I have, but when your hand reaches mine I hold onto your fingers for just a second.

‘Hello,’ you whisper, as if afraid of disturbing me.

I struggle to open my eyes, exhaustion tugging me back towards sleep, but I persist, and eventually manage to peel apart my heavy eyelids. Unable to focus, I see your blurred, frail form, and I smile the weakest of smiles.

‘Dad,’ I mouth, and curl my fingers around the sandpapery ends of yours once more.

Explained absence

2011-08-22T19:30:00.001+01:00

Sorry for not having updated in a while. I'm okay - not in hospital. I've been away in Edinburgh for a few days with Mum and J, and I've been busy writing stuff for my PGCert portfolio. In theory I have until 30th August to finish the portfolio, but I actually have the final meeting with my supervisor tomorrow lunchtime so I've been busily trying to finish up. My supervisor needed to receive my work by email today so that she has a chance to read it before we meet, so the pressure has been on. Thankfully the hard work seems to have paid off and I think I've done it! Of course I'll find out tomorrow if there's any major editing to do, but I don't think there'll be masses - there's only one piece I'm not terribly sure about. So after tomorrow's meeting all I'll have to do is put everything in one document, print it off and submit it! Mind you, whilst this is the end of the PGC portfolio, it's not the end of the project as I'm hoping to put what I've been writing into a book. There are a lot of words that go into a book, though, so I still have a great deal of writing to do. But I'm enjoying it, and I'm enjoying having the time to write without the pressures of other study now that I've finished my degree.

So yes, that's what I've been up to while I haven't been showing myself here - writing.

It was lovely to get away for a few days, and this time not end up in hospital! While I was at Mum and J's, J's brother, N, and N's Wife, F (that looks terribly confusing. I hope you're still with me) also came to stay for a couple of days. I haven't seen them since Mum and J's wedding 18 years ago, so it was great to meet them again, and we've now exchanged email addresses so it should be a lot easier to keep in touch.

Last time I was in Edinburgh there was an article in one of the Scottish newspapers about a new place that was opening in Edinburgh called The Salt Cave. It's one of a small, worldwide chain. It's basically a room that's covered in salt - 2 tonnes of salt on the walls and the floor - and has purified, salty air pumped into it. Up to 8 people can be in the one in Edinburgh at any one time, and a session lasts an hour, during which you sit in a comfy chair, breathe the salty air, relax in a half-light listening to new-agey music with waves in the background, and most likely fall asleep. The Salt Cave people claim the experience is beneficial to those with asthma and other lung conditions, sinus problems, ear infections, and various other ailments. I thought it was worth a go, especially as the first session is free :o) Well I'm not cured, and didn't expect to be, but it doesn't really matter, because it was relaxing and I enjoyed it immensely. I have to say though that my nose did feel a lot clearer, so maybe there's something in it. They do say that you need more than one session for there to be significant improvement in breathing conditions, and recommend two to three sessions a week to start with. I can't afford that at the moment, and with Edinburgh being the nearest Salt Cave to Newcastle it's not likely that I could get there three times a week either, but maybe I'll go when I'm up visiting Mum. And as I say, it doesn't really matter if it doesn't help the breathing much/at all, because it's relaxing, and that has to be good for my mental health :o)

Okey dokey, I'm off for now to check through my writing in preparation for the meeting with my PGC portfolio supervisor tomorrow. I promise I'll be a better blogger now :o)

Mobility

2011-08-13T13:51:00.001+01:00

This time last week I was still finding it difficult to process the trauma of the last attack. I wasn't sleeping even though I was utterly exhausted, and every time I lay down to sleep I had all the events of the last attack whizzing through my head at a hundred miles an hour. I was stressed and tearful through the day and generally wasn't coping very well, so I decided to see my GP to off-load. I know all the GPs at my practice very well, and they're all great, but there's one in particular I go to when I need to verbally vomit, and she's fine about me verbally vomiting all over her.

I made a double appointment to see Dr P and still managed to run overtime by 10 minutes (oops), but it was good to off-load. However, it wasn't an easy appointment. We didn't just talk about the asthma attack-related stress, but also my mobility. In fact, this is what took up most of the time in the end and it was instigated by Dr P. In light of the recent attack with how suddenly it came on, how severe it became and so quickly, and what little activity set it off, she said that, in her opinion, it's now too dangerous for me to walk. I already use my electric wheelchair (Taz) a lot of the time - partly because of the POTS as well as the asthma - but she said I should use it as much as possible, and I should consider myself to have virtually no mobility.

It's a shock. It's upsetting. I know it's the reality, and I know that I was using my electric wheelchair more and more, but to have my doctor say this feels very different. I keep thinking about the implications - all the things I hoped to do again, but will probably never be able to. I don't feel ready to give up my mobility entirely, but then I wonder if I ever will do. I doubt it. A part of me knows that she's right, but another part of me wants to rebel. Then I ask myself if the consequences are worth the rebellion and they're obviously not...

I had wanted to try to get some level of fitness back. How am I supposed to do that now? I asked the doctor about getting back to supervised exercise at the gym and she told me no way. She said that in her opinion the only place that it's now safe for me to do any kind of exercise is in hospital where there are resuscitation facilities and medics on hand, not just physios. I can't see that happening. Yes, I went to pulmonary rehab at the hospital, which was good, but there's a waiting list and I can't see that I'd be able to take a place permanently. I've emailed the Charge Nurse on Ward 29 to ask his opinion, but I think he's away at the moment, and I'm probably going to have to talk about it with my consultant anyway.

It's a lot to take in. It feels like the boundaries of my illness have changed again ... more obviously dramatically than anytime before, or anytime I remember.

Success!

2011-08-05T22:40:00.000+01:00

I have had the most satisfying week of success that I've had for a very long time, possibly ever!

I finished my final Open University course at the end of may, writing my examinable essay (EMA) in a bit of a panic after a bad asthma attack and a prolonged hospital admission. It was also in the wake of my step-brother's suicide, so I'm sure you can imagine what a particularly stressful time it was. However, the results came through on Tuesday and to my great surprise I got 87% I'm thrilled!

Still revelling in the glory of that success on Wednesday morning and I got an email from the OU with official confirmation of my degree - BA (Hons) Lit, with First Class Honours :oD I knew that if I passed my last course then I'd get my degree, and I knew that I'd get a First, but it was still fantastic to get the official confirmation.

Then on Wednesday afternoon I had an email from Newcastle University offering me a place on their MA in Creative Writing that I'd applied for. I've been doing their Postgraduate Certificate in Creative Writing over this past academic year (even though I was still an undergraduate), but I still had to apply for the MA and there wasn't an absolute guarantee that I'd be accepted.

I've been on a high since getting all that news, and I'm now really, really looking forward to my graduation at the Barbican in London on 16th September, and my graduation party back here in Newcastle on 24th September.

I can hardly believe I've done this. I missed a lot of school through my teenage years because of asthma and bronchitis, also struggling with depression, particularly during my A-level years. I certainly didn't achieve my academic potential at school, and didn't really believe I was clever enough to do a degree. Now I have a First class honours degree, I'm well on my way to finishing my PGCert (another 2 500 words to do for my portfolio by the end of the month), and by this time next year I'll almost have finished an MA!

I have surpassed my own expectations, and I'm loving it!

Walls have ears

2011-07-30T20:06:00.001+01:00

I promised you some insight into my experience of the ward and I've written a piece about it. It doesn't give the whole experiece, but it's entirely true and will hopefully show you some of the craziness of it, and why I was so desperate to get out of there. Before I paste 'Walls Have Ears' in here I want to say that while the place was utterly loony, the general care I received was okay. So anyway, here it is (with apologies for the formatting, but I can't seem to keep it the same as in a Word document):

Walls Have Ears

‘Harold? Harold! Are you under the bed? ... Get out from there. Come and get your fish, your chips, and your pudding. Or do you want sausage? ... Harold?’

It was supposedly a respiratory ward, but shut behind the curtains in the corner of this old-fashioned nightingale ward, I listened to those around me and it was evident that most of the other patients who lined the walls like shabby ornaments – relics of better times – were suffering from dementia.

‘Lemons! Nurse! We need lemons!’
I couldn’t imagine what purpose an elderly hospital patient would have for a lemon, let alone an urgency for them, unless of course Harold had emerged and required lemon with his fish. But there was little time to contemplate before I heard the next bizarre question.
‘Nurse, is it all right if I get into the wardrobe?’
After only a short pause, and with almost a tone of distraction as though the request was far from unusual, the nurse replied, ‘Yes lovey, that’s fine, except that you’re in hospital and you’ve left your wardrobe at home.’
‘Oh,’ responded the voice from a couple of beds down to my left, ‘Never mind. I’ll wait until I’m home.’
‘By the way, Jeanette, that was your daughter on the phone.’
‘Which one?’ asked the same voice as had wanted to get into the wardrobe.
‘The one in Scotland. She sends her love and says she’ll come down with the family next week.’
‘That’s Eileen. She’s my main daughter.’
Her main daughter? Did she have another, back-up daughter? How would it feel to know that you were only second or even third in line when it came to a hierarchy of daughters? Thankfully this wasn’t something I’d ever have to worry about as an only daughter, but in days of fragility and insecurity should I have thought about the possibility of back-up children I may well have worried about not being a main child.

The clamour continued, with telephones ringing incessantly, the nurse call bell hooting like a muffled fog horn, seemingly never answered, and a chorus of elderly ladies calling out the names of those I presumed were husbands, sons, mothers, daughters, fathers, friends.

‘Mark!’ It was the voice that had previous called out for Harold.
‘Mark!’
‘Dorothy, there isn’t anyone here called Mark.’
‘I know. Mark!’
‘If you know there’s no-one here called Mark then why are you shouting for him?’
‘Because I want him to come here,’ with which she must have pointed to the health care assistant.
‘But he’s not called Mark. He’s called David.’
‘I know he’s called David. Do you think I’m stupid? I’m not going to call him David, though. I’m calling him Mark.’
‘Why?’
‘David’s a poncey name. I like Mark better ... Mark! Come here, Mark.’
With a quiver of laughter in his voice, David asked what Dorothy wanted.
‘I want you to come here. I want you to see that Harold gets out from under the bed, and I want you to tell that Alex that from now on I’ll be calling him Frank. Oh, and while you’re down seeing to Harold, ask him to start thinking about what we should call our twin boys.’
‘Your twin boys? You haven’t got any children, Dorothy.’
‘I know, but we might yet, and what if we have twins. We’ll need names. Boys names. They’re bound to be boys. Cecil, I think. Tell Harold, Cecil, or Sebastian. Or maybe Robert. Wait! No, tell Harold, Umberto. And also, get this bloody cat off me.’
‘Cat? There isn’t a cat.’
‘There is in my imagination. Get it off me! It’s biting me!’
‘Er, okay ... Come here, cat ... Leave Dorothy alone...’
‘Don’t just walk away, young man. Get the cat off me, and tell Harold to put Christopher on the list. Have you got that? Make sure you put Christopher on the list. And Philip. What about Henry? And Peter? No, don’t put Peter on the list. Oh, and while you’re getting Harold, tell him we’re definitely not having David. Go on now, Mark, bugger off with that cat and don’t let it have Harold’s fish. Mind, if I hear that he’s had Harold’s fish I’ll be coming to slap you round the arms and the legs for being a naughty boy. D’you hear me, Mark? Do you?’
A rather timid, ‘Yes,’ could just be heard over the holler from a nurse further down the ward proclaiming that bed nine had a sore bottom.
‘What was that?’ enquired the nurse tending to the patient in bed twenty, opposite me.
‘Bed nine. Edna. Sore bum.’
‘Bloody hell,’ I thought, ‘can nothing be private in this place?’ I felt sorry for Edna, not only because she obviously had a pressure sore that would be causing her pain, but also because the lack of privacy meant a lack of dignity. Dignity is hard enough to come by as a hospital in-patient without having it shouted down the open ward that you have a sore bottom.

When the doctor later came to see June in the bed next to me he asked her if she was moving her bowels as usual. Dorothy shouted out from across the ward, ‘Oh p-lease, doctor, do you have to? Some of us are trying to rest. We don’t want to hear about the woman’s toilet habits.’ I was warming to Dorothy and her spirited outbursts, and thought that while she obviously had some dementia, remnants of the feisty woman she’d obviously been were shining through unscathed.

Unable to do anything about the lack of privacy in this nightingale-style ward, the doctor had no choice but to continue his rounds as usual, so moving on to his next patient I heard him draw the curtains around another bed. We all then heard him tell Janet that the scan she’d had the previous day showed that she had cancer. There were options – either treat it with medication – chemotherapy – or leave it be. He couldn’t say how effective chemotherapy would be, but asked if it was something she might consider. He seemed to want an answer immediately, and sounded a little exasperated at Janet’s questions about what it all meant for her. She asked him to write it down so that she could look at it again when he’d gone and talk about it with her family when they visited later, ‘or else I’ll forget, doctor. I don’t remember things the way I used to, you know.’ I wondered if she’d later read the doctor’s scrawl informing her of her treatment options as if she were being told for the first time about her cancer diagnosis. How many times would she need reminding that she has cancer, and how hard would it hit her each time?

A rare moment of relative peace followed the ward’s collective learning of Janet’s cancer, but gentle muttering floated across the ward to my curtained bed area from eighty-three year old Doris in bed nineteen. I listened carefully to her quiet conversation with her absent daughter as she recounted happy days at home together and the ease with which her daughter had apparently taken to education.

It seemed that Doris was reflecting with her now grown-up child on a successful passage to adulthood, who appeared to have recently told her mother that she was getting married.
‘Don’t worry, my lovely, about money. Wealth won’t improve your education, or make you love your young man any more than you already do. Wealth won’t make you happier. Enjoy one another and you will have all the riches you need.’
A short pause in her musings during which I wondered if Doris were listening to the other half of this conversation – the imaginary presence of her daughter.
‘...The morning a girl wakes up, my lovely, and realises that she’s going to get married – they’re the happiest moments of her life. I wish you all the happiness in the world.’
A smile hung in the air, and I rested in its gentle warmth, eventually falling asleep.

I awoke with a start sometime later to find that the curtains had been pulled back from around my bed, and that Jeanette was about to sit on my face and use me as a toilet. Too surprised by the situation to react in a coherent manner, I was immensely grateful for June’s moment of lucidity and her shout from the bed beside me for the nurse, who came running from the nurses’ station in the centre of the ward.
‘Jeanette! Stop! Come on now, if you want the toilet let me walk you down there,’ and off the two of them went to the other end of the ward.

Dazed by my lucky escape from what would have been a truly horrendous happening, and still in the process of waking up from an exhausted slumber, I was only mildly bewildered by what I saw on the other side of the ward. Doris had stripped off and was doing naked press-ups against her bed, and the seventy-nine year old woman beside her had taken off her pyjama trousers and was weeing in the middle of the floor.
At this point an official-looking woman arrived on the ward with two others who were clearly being shown around the hospital.
‘This is one of the older wards. As you can see, not a lot has been done to update it yet, and it’s not clear how much will be done. You see the units on the walls? Well when they were being fitted it became apparent that the walls were crumbling. We’re not entirely sure how the units are staying attached to the walls, and to be honest, although we don’t know when it’ll happen, we expect the walls to fall down at some point.’

The hospital visitors glanced at the walls, glanced at their guide, and followed her out slowly nodding their heads.

I was incredulous that the hospital should still be using a ward that might crash to the ground without much warning, and decided that this was another very good reason to get out of there as soon as possible. If I didn’t, it seemed likely that I’d either be crushed by crumbling walls or driven mad by the senility by which I was surrounded. In the meantime I was going to request some ear-plugs so that I could at least be ignorant of all that I was not meant to hear.

For one night only

2011-07-23T21:10:00.001+01:00

I've been away. I went for one night to Arnside in Cumbria with W. The plan was to go away on the Friday, spend the night in the youth hostel, and on the Saturday go to South Lakes Animal Park to meet the giraffe that W sponsored for me for my birthday. Although the weather wasn't great we had a lovely drive over Hartside Pass, stopping at the top to picnic in the cafe car park, taking in what we could see of the view over to the Lake District. There's something about W and I that seems to curse the weather, and on almost all of our days out it buckets down with rain, and Friday 8th July was no different, but as ever, we weren't going to let it spoil our fun. Onwards to Arnside.

We arrived at the youth hostel at around 3pm, but couldn't book in until 5pm when reception would be open again, so we went for a wander down the path from the hostel to the 'prommenade'. The grandly named promenade that's actually little more than a small pavement, runs along the edge of the Morcambe Bay estuary with its fast-changing tides and sinking sands. Needless to say, we didn't venture onto the sands, but followed the promenade to the shops on the waterfront, where W bought an ice-cream (actually it was 2, because she had to have one for me as well ;oP ), and I bought a bottle of Peroni for later on as we planned to come back down to the waterfront later to watch the sunset while we had a drink in celebration of W passing her graduate diploma.

Taking a bit of time to relax and get into holiday mode, albeit for only one night, we sat on a damp bench on the 'pier', getting increasingly wet ourselves as the rain clouds rolled in, and we heard thunder rattle off the mountains to the north. After I'd finished nebulising, we decided that maybe it'd be best to go back to the youth hostel and wait inside for reception to re-open, so off we toddled. But it wasn't quite as easy as that, because the path up from the promenade to the youth hostel is really quite steep, and my rubbish old lungs aren't that good at 'steep', so I had to take it slowly, and breathlessly, and getting wetter as the rain got heavier. In the end we both made it up the hill, stumbled out of the rain and waited in the youth hostel kitchen for an hour when reception opened again.

It seemed rather ironic that two severe asthmatics should be allocated a youth hostel room right at the top of the building, but so it was. However, we did appear to have the seven-bedded room to ourselves, and there were great views on two sides of the estuary, so after making up our beds we rested a while, enjoying the views and taking time to relax some more before dinner.

When we went down to make dinner I decided that I'd take things with me to do in the lounge afterwards so that I wouldn't have to climb all the stairs again. So after dinner, W and I sat in the lounge chatting, drinking Peroni (although W had champagne), and doing cross-stitch, while it rained rods outside. It looked as though our plans to watch the sunset by the waterfront weren't going to happen, but then sod it, we decided that we'd go down to the estuary anyway and watch the rain go down instead of the sun.

Back we went down that steep path from the rear of the youth hostel, and along the prom the other way this time, not that we could go very far before the path disappeared into the sand. We saw a couple of herons flying over the sands a little further out, and one flying from the tree tops, and then we realised that the thunder was getting louder, the storms were getting closer, and perhaps it'd be best to go back and dry out.

The path back to the hostel was more of a challenge this time, I think in part because I was tired, and in part because of the muggy, thundery air. It was a real struggle, and I had to stop several times whilst W soldiered on ahead. I could feel my lungs tighten and knew that some serious nebulising was going to have to happen when we got back inside, and indeed, by the time we got into the youth hostel I was wheezing well and knew that I'd be stupid to try to climb the stairs to the dormitory before nebbing, so we went into the lounge instead. Thankfully it was quiet.

I'm more than used to using my nebuliser in public, and it doesn't bother me, but I can't say that I like an audience, especially if I'm feeling ill, which I was beginning to confess to myself that I did. More than anything, though, the overwhelming feeling was one of being pissed off. I had come away for one night of fun and relaxation, and celebration of W's graduate diploma, and to meet a giraffe. How dare my lungs play up now. I was going to neb them into submission. At least, I was going to try to.

An hour and a bit later, with five nebules of salbutamol, 500mcg of ipratropium, and an extra 25mg prednisolone on top of the 60mg I'd already taken in the morning (my current maintenance dose), I was only very slightly better ... or perhaps that should be, only a little less bad. I was struggling and I'd run out of options. W asked if we should go to hospital. Speaking only a word or two at a time, I replied something along the lines of, 'The problem is that I'm in no state to drive, you're not insured to drive my car, and we don't know where A&E is.' Then W pointed out that the NHS have their own transport services, and I realised with an explosion of expletives in my head that I was obviously losing all ability to think clearly - a very bad sign - and that I was most likely not going to meet my giraffe, but instead end up in the back of an ambulance.

W went off to reception to get help. The man sitting on the sofa in the window opposite told me he was a district nurse. He said he was impressed with how I coped with my illness, without a flicker of panic, but my primary reaction being one of pissed off-ness. W came back, closely followed by the First Responder Unit (FRU) paramedic, who W had already genned up with my medical history and the course of the evening's events. The paramedic was lovely, but there was something unconventional about her. I couldn't work out what it was. I sat, breathing in her oxygen-driven nebuliser with a pulse oximeter on my finger, while she asked W to phone ambulance control to make sure an ambulance was on its way, when it struck me - although the FRU paramedic had on her shiny, hi-vis, paramedic jacket, underneath that she was wearing pyjamas! This was rural ambulancing, and she'd obviously been tucked up in bed when the emergency call had come through. Bless her.

It was only a matter of five minutes or so before the paramedics arrived with an ambulance, into which I was quickly bundled. They tried to get a cannula in, but my veins are so buggered from all the cannulations over the years (hence my portacath, but you have to be trained to use it) that they didn't have any success. Instead of IV hydrocortisone, I was given an IM dose instead and then whizzed at great speed on sirens and blue lights along the country roads, and down the M6 to Lancaster, where upon I found myself in the A&E department of the Royal Lancaster Infirmary (RLI).

The doctor I saw in A&E seemed rather scared, not terribly confident, but also reluctant to ask any seniors to get involved. He did okay, overall, although didn't actually get me any better in the three hours I was under his care. To be fair, though, he did take on board my treatment protocol from my consultant that I carry with me, and he started the aminophylline infusion before sending me off to the Medical Admissions Unit (MAU).

I have to say that I was impressed with how they dealt with me in MAU, and also with how they treated W. I was seen quickly by the junior doctor, who soon realised that he was going to need advice from his senior so got the registrar (SpR). The SpR was a lovely man - ever so gentle - who made sure that W was okay, and asked if she had any questions. He also recognised that I know my disease better than they do, and that W also knows how things go for me with attacks too, so he regularly checked in with us to see how we thought things were going. He was also quick to get ITU on the case, and they were quick to assess that I needed BiPAP and transfer to ITU. I definitely wasn't going to meet my giraffe.

W had work the following day so had to get back to Gateshead. This meant that she'd first have to find her way from Lancaster back to Arnside, where they youth hostel team would hopefully let her get some sleep before booking out and trying to find her way from Arnside to Newcastle, where she'd left her car outside my flat. Loathed as she was to leave me, she had to, and it was only a little while after she left that I was transferred to ITU.

The care I received in ITU was great. They were lovely. They were on the ball. The consultant (Dr W) who was on over the weekend happened not only to be an ITU consultant, but also a respiratory consultant, and he was fantastic. He immediately liaised with my care team here in Newcastle, and I had absolute confidence that I was very capable hands. I stayed on BiPAP for about thirty six hours, and in ITU for four days before I was well enough to be moved to the respiratory ward, but Dr W said that he was more than happy to keep me under his care whilst I was in the hospital, given how ill I had been and how complicated, difficult and brittle my asthma is. I think this was something of a relief to the doctors on the resp ward.

I'll blog more about the resp ward in my next post, but I'll leave this here for now.

Progress

2011-07-04T23:43:00.001+01:00

It's far, far too long since I blogged. Apologies. I had my first meeting with my PGCert portfolio supervisor so I've been spending some time writing, and a lot of time fretting that I haven't written enough. In the end I sent my supervisor the miserly 1254 words I had written, and ended up getting some good comments, although I did promise to write considerably more by the time we next meet. I'd better get to it though, as our next meeting is on 21st July, which is approaching far too quickly :o/

Now then, back in May I blogged about how I can't get into my local pharmacy because they have no disabled access. They assured me that they'd finally been given planning permission for a temporary ramp, and I speculated on what a 'temporary ramp' might be. Weeeeeeeeell, I went to the pharmacy on Friday, and was pleasantly surprised to see that they had at last had a doorbell fitted so that wheelchair users could now attract the attention of the shop keepers without having to rattle the letterbox while the door automatically closes on our faces. After pressing the new doorbell, I wasn't entirely sure that it was working because I didn't hear any tell-tale ringing, but a minute or so later one of the assistants came to the door, and then asked if I would like the ramp! Would I like the ramp?! Of course I would like the ramp! I would love not to feel like a second-class citizen waiting out on the street next to the dog that's been tied to the bollard whilst its owner has gone inside the shop. It turns out that a temporary ramp is a foldy-uppy ramp that, although apparently heavy, can be put into place when needed and then stored away inside again.

It was a real novelty to go inside the chemist shop. While I was waiting for my prescription I had a little scoot around and looked at all the things I now had access to buy ... and then decided that there wasn't really anything that I particularly wanted to buy at that time. At least I knew that for myself now. How very pleasing :o)

The ramp does look pretty heavy, and for some reason they keep it behind the counter at the far side of the shop. I rather suspect that the pharmacists and shop assistants are going to get fed up with lugging it around all the time, and if this happens they might just push management for a permanent ramp. Sooooo, my very basic plan is to go into the store as much as possible, which won't be difficult as I have to go there for my prescription very frequently, and they almost never have everything on my scripts, so I invariably have to go twice for each one.

Progress, definite progress, but my quest for equality of access isn't over yet. I'll be back into Boots tomorrow for the rest of today's prescription, so I hope the pharmacists and shop assistants have had spinach for dinner tonight ;o)

Busy, busy

2011-06-23T00:40:00.000+01:00

Sorry about the lack of postings over the past week. I've been a tad busy.

I came up to Edinburgh on Saturday to stay with mum for a few days and to catch up with some friends from the Open University, one of whom I've previously only known online. J and her husband A came up to stay with our mutual friend O, and on Sunday we all got together with another joint friend, F. It can be odd meeting up with people 'in real life' when you've only ever met in the virtual world before, but as with all the other folk I've met up with from the OU, there was nothing awkward at all about meeting J, and we all had a fab time together. So much so that we got together again the following day.

I'll write more about what we got up to when I'm back home, but I'd like to include a few photos and I stupidly forgot to bring the cable for my camera up to Edinburgh with me, so I can't transfer pics from the camera to the 'puter.

After a couple of days of jaunting off with friends I settled down yesterday to some study. I've finished my OU studies now - Hurrah! - but I still have some work to do for my postgraduate certificate, the most pressing of which has been the end of module piece for the last module. I've been gathering my thoughts for the piece over the last couple of weeks, and I really meant to have completed it by now, but somehow I got tied up with relaxing after finishing my undergraduate studies. Anyway, I settled to work yesterday and managed to write the piece I needed to write. All I need to do with it now is print it off and take it into the university for Monday.

Another thing that's been hanging over me is my application for the MA. It's a natural progression from the PGCert, and should I do well enough on this course then I'll get excemption from the first year of the MA. So far this is looking hopeful, but it depends a bit on what I get for the piece of work I did yesterday. However, hopefully I'll get what I need and will be able to move on, but I still need to put in the official application, even if it does seem like something of a formality given that I was last week asked which modules I'd like to do in the MA so they can provide wheelchair accessible classrooms.

Most of the application form for the MA is fairly straight forward, but as on all other academic application forms I've come across, there's that awkward 'Personal Statement' bit. I hate them. I hate having to sell myself on paper. To be honest, I didn't know what on earth I could write that was different from what I wrote on my PGC application last year, and when I mentioned this to someone in the department they said, 'Just put the same. After all, it worked last time.' :oD I liked that. I decided that I'd read through what I'd written last year and probably cut and paste various bits of it, adding any new info that seemed appropriate. The major flaw in the plan was that the computer seems to have scrambled and eaten the copy I'd kept of last year's personal statement :o( I spent today coming up with ideas for the new personal statement and then writing it, although it took a lot longer than anticipated as I got terribly distracted by Wimbledon. After the excitement of the Murray/Kamke match (which wasn't the only match I watched), I eventually got my head together and wrote what I needed to for the MA application.

The other thing that I really need to write is something for my PGC portfolio. I have the first meeting with my supervisor next Thursday and I have to email her what I've written by next Wednesday evening, the trouble being that I haven't actually written anything yet. Yes, I've still got time, but I'd prefer not to have made myself be doing it under pressure. Although I'm going home tomorrow, I'm planning on at least doing some thinking in the morning about what I might write so that I can have it drifting around my head while I drive back to Newcastle in the afternoon/evening.

And when I haven't been writing, panicking about not writing, being distracted from writing by watching tennis on the telly, or meeting up with friends, I've been cross-stitching. I bought a new one a few weeks ago, and for the first time in years I'm planning on keeping this one for myself once it's done. I've only just started it, but here's what it's going to look like when it's done:

I love it, although there's a heck of a lot of work involved in it so I imagine it's going to take me a very long time.

So then, back home tomorrow, then a hospital appointment first thing on Friday, followed by a get together with a friend who I haven't seen nearly enough of over recent times, lots of PGC study over the weekend, and onwards into next week.

You're fired! You're hired!

2011-06-16T23:31:00.005+01:00

You probably remember that my last hospital admission was triggered by an allergic reaction, and that the most likely cause of the reaction was vegetables not being cleaned thoroughly enough by the carer before cooking. You may also remember that Social Services were having to conduct an investigation because of the seriousness of my situation. The investigation turned into a bit of a farse, in my opinion. 'They' asked the carer in question for an account of what she'd done in preparing my meal that evening, which she described, also adding that she didn't think she could have done anything differently. 'They' then decided that I must have developed a new allergy. Case closed.

I have eaten all the ingredients of the fated meal since then with no reaction. I have not developed a new allergy. Case not quite closed, if you ask me. I made it clear to the social worker that, in my opinion, this is a cop-out, and that I definitely haven't developed a new allergy. The social worker was apologetic, and acknowledged that 'they' didn't have the clinical expertise to diagnose the development of a new and non-existent allergy without clinical examination, i.e. they shouldn't have jumped to this conclusion simply because the carer said she thinks she washed the veg okay.

Actually, the social worker was lovely, and she came here (to my home) with one of the clinical nurse assessors. After talking it all through, and discussing my on-going care needs, it was decided between the three of us that a different care agency would be found for me as the current one aren't providing the service they're being paid to provide to an adequate standard. The social worker left saying that she'd give the agency their 28 days notice. They're now working this notice.

The social worker told me about a relatively new care agency that allows the client to interview prospective carers, and what she'd heard so far about the agency all seemed to be positive, so I agreed that they might be a good choice. I had the manager from that agency come round on Tuesday to discuss my care needs, and I was able to stress that whoever comes must be able to cook. I described some of the experiences I've had with carers from the current agency, and after she picked up her jaw off the floor she agreed that the ability to cook something more technically demanding than a ready-meal was a definite must.

I had a call from the manager of the new agency today. She's 'identified at least one suitable possibility in their carer pool,' and they're both coming round tomorrow afternoon. The manager will go through the paperwork that she didn't bring on Tuesday, and the three of us will discuss my 'needs and expectations,' and then I think the carer said that she'll leave me and the prospective carer alone for a while so we can discuss things further and I can ask any questions I may have.

I currently get my domestic care (cleaning etc) provided by a different agency. I'm not sure how it happened this way, but I've been thinking that it would make more sense to have all my care provided by one agency if possible, so on Tuesday I asked the manager of the new agency about the possibility of getting my domestic care through them as well. Of course, it'd first have to go through the social worker so that she can discontinue the contract with the current agency, but there shouldn't be a problem, especially as it's a bit of a battle to get the person who comes for my domestic care to do a decent job. The agency manager said they'd be happy to provide that service too, but maybe I'd want to see how they pan out with the other bit of the care package first, and that it wouldn't matter if it didn't all start at the same time. This is looking promising.

So far the new agency seem much more client-centred than the other agencies I've had, even to the point of asking me what time would be good for me to have them come! No more having my main meal of the day being prepared at 4.30pm - hurrah!

I am - I have been

2011-06-11T15:13:00.000+01:00

I am a church – honest and spiritual.
I have been a shack - small and fallen to the ground.

I am an owl singing melody in the night.
I have been a mouse – shy, retreating and silent.

I am the greens of a forest on a hillside.
I have been the black of treacle in a jar.

I am an apple tree bearing fruit and in blossom.
I have been an oak – dying, all twisted and knotted.

I am a spring day, coming to life.
I have been a thunderstorm, scared of myself.

I am the iron of a girder – strong and upright.
I have been the porcelain of a cup, chipped and cracked.

I am an eagle soaring bold through the sky.
I have been a wren - tiny, hiding away.

A great night out

2011-06-07T17:10:00.000+01:00

I had a fantastic evening on Sunday. I went to The Sage on the Gateshead bank of the Tyne. I love it at the The Sage - the building is magnificent, the views are wonderful, the atmosphere is welcoming, and I always feel a degree of sophistication whenever I go there, no matter what kind of concert I'm going to. The concert I went to on Sunday was Ladysmith Black Mambazo.

Ladysmith Black Mambazo were formed back in 1960 by the same guy who leads them now - Joseph Shabalala - but they were brought to international fame in 1986 when they worked with Paul Simon on his album 'Gracelands'. Those of you in the UK may also know their music from the old Heinz baked beans ads on telly.

I love their music and have done ever since I first heard them, but I've always had a love of traditional African music or music based upon traditional African music. The close harmonies are fantastic, and sometimes a little unexpected; when they perform live LBM perform without instruments so musical texture is produced entirely through voice; the performances are always vibrant and energy-packed, with an awful lot of the guys kicking their height, something I haven't been able to do for years, but even Mr Shabalala can do it and he's probably about 70 years old now!

The tour Ladysmith Black Mambazo are doing at the moment is promoting their new album, 'Songs From a Zulu Farm', which they describe as 'Taking the many songs and stories of their youth and adding new lyrics.' Of course, they did some of their older songs known by the audience as well, but much of their performance on Sunday was taken from the new album.

Just before the penultimate song they said that we might recognise what they were about to sing, and that if we did then we should join in. No doubt about it, the audience did all recognise the song. It was 'Old MacDonald had a farm' :o) Okay, as a largely British audience we didn't know it in Zulu, which is what LBM sang it in, but a chicken sounds pretty much like a chicken whichever part of the world you come from, so we duly sang along ... and some of us even did the actions. How many concerts have you been to where a couple of thousand adults sing 'Old MacDonald had a farm' whilst flapping their arms like a chicken? No, I didn't think it'd be many ;o)

Here are a couple more photos of LBM...

The bloke on the far right of the last photo is Muntu Valdo.

He was the support act. I'd never heard of him before (though isn't that often the way with support acts?), but really liked his stuff. He was very different from Ladysmith Black Mambazo, in both style and presentation, and it took a while for him to relax and engage with the audience, but once he did he was great. It was just him and his guitar, but he mixed sound on stage, building up layers of guitar lines and/or vocal lines so that it sounded as though he was playing with a group or with a backing CD. Actually, the point at which he really seemed to relax was when he told us about his on-stage mixing and demonstrated it. From that moment on he talked to us a lot more and had us joining in singing and clapping.

The whole evening was wonderful, and reminded me of how much I love to do these things; how much I love engaging with life and making it happen. In keeping with the spirit of making life happen, I booked another concert today, this time at to see Nigel Kennedy at Newcastle City Hall. Nigel Kennedy is very different again from Ladysmith Black Mambazo, but I have a rather eclectic taste in music and I'm greatly looking forward to this concert as well, although it's not until September. There's a lot of life to make happen before then.

Sew relaxing

2011-06-04T17:35:00.001+01:00

I love doing cross-stitch. I find it relaxing and can get absorbed in it for hours. It can be a bit of a strain because of the holmes-adie pupil in my left eye, and before the cataract surgery it was impossible for a while, because I simply couldn't see what I was trying to do. Since then I've loved getting back to it and have spent many hours luxuriating in the peacefulness of the activity.

I've been working on a cross-stitch Mr Men height chart for my youngest nephew. I'd been hoping to get it done before he was born in February, but studies and lack of breathing ability got in the way, and J was born on 23rd February without me having finished the cross-stitch. I'd then been hoping to have it done in time to take the finished product to Yorkshire, but that didn't happen either. However, I did eventually finish it last night. Here it is:

I'm really pleased with it. The stitching itself (and the rectification of mistakes along the way) took ages, but then I had to hem it, weight it, back it, and make it into a hanging thigumy. There weren't any instructions for any of this so I've had to be creative in working out how to do it, which perhaps makes the finished product more satisfying.

I've already started on the next one, which is a sepia-toned harbour scene for my dad's birthday next month. Hopefully I'll get it done and framed on time.

Brides

2011-05-30T22:16:00.001+01:00

Two of my friends got married on Saturday. It was a lovely wedding and C, the bride, looked beautiful. The occasion, though, reminded me of a conversation I had with my mother a few weeks ago. It was a very surreal conversation, and one that you should probably never have with your mother.

I'll be graduating with my under graduate degree this September (I just sent off my last essay today!) and I'm having a party to celebrate. My mum suggested the party when I was in hospital sometime last year or the year before, and it was just before my most recent admission that I started to organise the party and send out invitations.

Mum and J are very kindly paying for most of the party, and it was while we were discussing some of the costs that this surreal conversation took place, beginning with her saying, 'Of course, if you decide to get married next year then we'll have to have a re-think about finances.'

???????? 'Yeeees, but I need a man, and a relationship with a man, before getting married becomes a possibility.'

'Hmmm. Have you thought about maybe going to Thailand and getting a Thai bride?'

??????????!!!!!!!!!!!!!!!!!!???????????????!!!!!!!!!! 'No. I can honestly say that I haven't. And Mum, I'm not gay. You do know that, don't you?'

'Yes, it's just ... Well, I thought with your liberal views, and all that...'

?????!!!!!!!???????? 'Er. Um. Right. I see.' NO, I DON'T!!! What liberal views in particular???? 'Well, um, I'm not gay, and I'm not going to Thailand to get a wife.'

'Oh. Okay ... So you won't be getting married next year?'

'No, I think that's very unlikely. Lovely as it would be to be getting married, I do want to marry a man, and I want it to be a man I love.'

I have no idea where that idea of hers came from, and I have to say that I felt as though I ought to be apologising for being straight. I'm also rather perplexed as to why she seemed to think I might want a bride! And a Thai bride! This is the woman who was anxious about me being well enough to go to North Yorkshire, so I have no idea where this notion of me jetting off to Thailand came from. And a bride from Thailand!!! The conversation seems so wrong in so many ways.

Completely surreal. Totally bizarre.

Black Blood

2011-05-28T01:29:00.002+01:00

Following on from my post Reflections I wanted to try to explain a little more about self harm (si), but I also wanted to try to take you into the experience, into the mind-set, although of course I can only take you into my own experience, not that of anyone else who has/does si. To this end I've written 'Black Blood.'

It was difficult for many reasons to write 'Black Blood', not least because I had to take myself back to that deep, dark, painful time of depression and self-hatred - a place I remember so vividly, even though I don't live there now. Perhaps the difficulties are worth it if they help just one person who reads this to understand a little more about si and the confusing experience it is with it's dreadful emotional pain and the conflicts that battle inside...

Black Blood

Wrapped up in the dark, trapped in the night and bound by a constricting sheath. I need to breathe. I need to break out of my prison. I need to know that I’m still alive. I am completely numb, yet I am also entirely filled with pain – the pain of my soul being murdered; murdered by depression. I need to know that I have some life inside me and I need to feel something other than the intangible death of my spirit. I need to break free from myself ... unleash myself from the binding of my skin ... cut myself free.

My mind whirls into an almost drunken calm. I know I will do this. I know I don’t want to, I know that I need to, I know I do want to, and I feel the jittery excitement of expectation.

I finger the flimsy blade gently, caressing it with both love and hatred. I have freed it from its plastic casing and now it is my saviour and my downfall. It has potential to pacify the monstrous depression and save me from certain death – suicide – but it could equally well kill me entirely ... if I choose; if it chooses ... if it catches the wrong thing; the right thing. Which will it be tonight?

The lamplight isolates me in the darkness of the night – a spotlight on my anticipated activity – and then momentarily glints back at me from the grey metal, like a single eye winking encouragement: ‘Come on. You know you need me.’ Evil. Enticing. Exciting. Energising.

The coil inside me frets.

The tension threatens to strangle me and I tighten my grip; fingers turning white, ghostly in the halo of light from beside me, confirming something of my deadness. I look down at the pale, clean canvas of my arm and I hate it. I see the blue-black blood in the surface veins, assisting the transport of the poison that is in it – undetectable by any analysis, but there nonetheless, feeding the beast of depression. I need it out of me.

The coil winds further.

With an uncertain tenderness I place the cold slither of razor blade onto my arm and let it rest on my skin. The sharp edge tantalises the nerve endings, making them prickle with anticipation. They dread it. They adore it. There is an indentation, but the weapon does not yet break through the suffocating membrane. I am waiting.

I am waiting.

The night envelopes me.

I am waiting.

I am alone in the dark; alone with depression; alone with an all-consuming detestation of myself. Then with a fury that explodes like a silent volcano I press down hard, I pull back my hand, and I swipe at my skin. I rip into it like a savage battling through the undergrowth hunting its prey. I will not give up the quest. Layer after layer, through taut, white skin; through yellow jelly fat; through strings of veins; past tense cords of tendons, and I feel nothing. I continue my search – there must be life hidden somewhere in the dark corners of my being. Somewhere. I slash my way through the jungle of myself until at last I see the purity of bone – a white angel that smiles at me through the gape in my arm. It has caught me before I have killed myself. It has saved me from myself. It weeps blood and the tears form rivers down my arm and onto the tissues I’d arranged as a comfortable pillow for my limb before the massacre had begun.

And then I feel the pain.

It is a shock.

It is a relief.

Now I cry from my eyes as well as my arm, both in silence, both in the dark. Full of hatred. Full of calm. I am alive. I do exist – the physical pain tells me so.

I watch the blood-well in my arm. It fills and it spills, and what has been poisonous is now pure – the black blood having turned red as soon as it hit the air. My body has taken a breath through my grinning skin and I am relaxing. Calm is descending. The hunt is over and the beast is slain. Red rivers show my tracks, and slowly they too begin to ease up, no longer desperately trying to escape the confines of the deathly, tight shroud that shackles me to myself. It thickens. It oozes. It creeps. It stops. It sticks to me, reminding me that although it is now free it is still a part of me. I despise it. I love it. I wipe it from me, easing it off my skin with the tear-damp tissues I’d held to my face. I mother myself and I tend to the wounds of the injured child before me – this limb that feels detached from me, yet is a part of me. I weep for it; I weep for myself; but I rejoice because I have proved that something of me still lives, even though I had to slice through the repugnant wrapping that engulfs me to find it.

I sit with the remnants of the beast strewn around me.

I come back to myself more fully.

I re-enter the world, although still in darkness.

Reality hits.

Now that I know that I exist I realise that however much motherly love I give myself I cannot repair the damage I have done. But I also cannot afford to beat myself up about having done it ... I have already done the beating. No, now what I must do is prepare another soft pillow, this time of padded bandage, in which to tenderly wrap the damaged arm with its trapped angel smiling from within. Now I must brace myself for a battering of scorn, resentment and abhorrence for my self-loathing act of destruction ... of survival ... from medics at the hospital. They will hate me as much as I hate myself, and their hatred will feed the beast, refuelling its energy and resurrecting it from its resting place.

Access

2011-05-24T14:26:00.003+01:00

I can't get into my local pharmacy. You'd think that of all the places that'd be wheelchair accessible it'd be a chemist shop, but no, my local one has a step about 6 inches high at the door and no ramp. It doesn't even have a door bell. Helpfully (or not), it has one of those large push-buttons with the wheelchair symbol on so that the door opens automatically and a wheelchair user doesn't then have to negotiate holding the door open as they try to go through, but that's not an awful lot of use when you can't actually get up the step to go through the door. It's a bit rubbish really, especially as I'm there quite frequently to get the huge prescriptions of meds that keep me alive. When I go there I use that push-button on the outside of the shop, keeping my elbow on it so that the door doesn't then close on my face after a few seconds, and knock the letterbox until someone at the till on the other side of the shop notices me. Either that or I ask some passing person if they can tell a member of staff that I'm there. I will eventually be seen to, but have to wait outside while my script is being prepared, and this can take some time. It's not so bad if the weather's good, but it's no fun at all if it's freezing cold, pouring with rain, or blowing a gale, and it also makes me feel very much like a second-class citizen.

Two and a half years ago I asked them if they had any plans to get a ramp. They didn't, but after my enquiry they applied for planning permission. Excellent! Not so excellent has been the council's response. When there was a 'trend' for ram-raiders the pharmacy put up concrete bollards in front of the large, glass frontage, and these have since caused a problem with getting planning permission for a ramp. Goodness knows why. Anyway, I got a bit fed up with waiting so checked the progress of the ramp planning permission on the council's website, and came up with nothing. I couldn't see any mention anywhere of an application having been made. Hmmm. I contacted my local councillor to see if he could help, after all he was so helpful with getting the snow cleared for me so I could get to the doctors at the height of that awful weather in December. He made enquiries. He contacted the regional manager of this national pharmacy chain. They sent an email back to him saying that they had no plans to install a ramp at this store and hadn't set aside any money to do so. My friendly councillor pointed out that they were in breech of the Disability Discrimination Act, and low and behold they agreed to have a meeting with Mr Friendly Councillor ... only then there was a change of regional manager and the new one had to get up to speed with her new role before she could meet with Mr Friendly Councillor.

I was at the pharmacy again yesterday, sitting outside in the 60-70mph winds, when the store manager came out. I've been hassling her intermittently about getting a ramp in the hope that she'd hassle her boss and the hassle would continue up the chain, and something somewhere seems to have worked, because yesterday she told me that they've been granted planning permission for a temporary ramp. This is fantastic, though I do wonder what a temporary ramp is, and how temporary is temporary, and does it mean that they're just going to have a ramp for a short while and then take it away again, or are they actually going to replace the temporary ramp with a permanent one. Whatever, it's great that I'll be able to get into the shop at last, even if it is only for a short time. Mind you, there's no saying how long it'll take to get this temporary ramp installed.

On the window of the same store is this sign (apologies for the reflections):

It tickles me. I know the two pieces of information on the sign aren't supposed to be linked, but the fact that they appear on the same sign, and there's a complete lack of punctuation, does make it look as though they will charge for any help they give to the disabled, elderly, or those with children ... and it does kind of fit with the attitude the regional manager has appeared to have regarding ramp access to this store. It really does tickle me, though :o)

Reflections

2011-05-21T23:55:00.002+01:00

I've been thinking about Nn's death, and whilst it's bound to have a significant impact on me I wonder if it's had more impact because it was suicide. Death is a taboo subject in most of society, and suicide is even more so. I'm going to talk about it here though, because not only has it raised itself in my life now, but it also had a significant presence in my life in the past.

I suffered from disabling depression for many years. I was drowning in an emotional sea of black treacle that sucked me down into its depths and so nearly suffocated the life out of me. I spent a significant amount of time in my twenties in hospital with depression, and to be honest I didn't believe that I'd ever be free of it. I wanted more than anything to be 'normal', to be happy, but the more I wanted these things the less achievable they seemed to become.

I self-harmed. Actually, I started to self-harm (si - self injure) when I was in sixth form, though I always hid it as much as I could, but as I got older and the si became worse it was impossible to hide from everyone, because it was too severe to patch up myself. Very few people understand self harm and think of it as attention-seeking behaviour. Perhaps it is for some, but not for me - I never wanted others to know, and I hid it as best as I could, but when the cuts wouldn't stop bleeding or were too severe and deep for me to manage I had no option but to go to A&E or my GP to get sewn up. No, for me si was a huge mix of things. To a certain extent it was about tantalising death - I didn't care much if I lived or died (and later I definitely wanted to die), and venturing that close to arteries, tendons, bones, ligaments, etc was almost like letting fate decide. But ironically, si was often also about survival. I hurt so much and so deeply in my soul. The only thing that told me that I wasn't physically dead was the emotional pain I was in. Oddly, I often didn't feel the physical hurt of cutting myself until sometime after I'd done it, and then it was almost a relief because it was a different kind of pain, a tangible pain, something I could see and was justifiable. If I hadn't cut I would've imploded more entirely, I'm sure. Contrary to the 'tantalising death' thing, si was also almost the opposite of death ... it let the edge off the agony and stopped me from killing myself ... a kind of letting off steam from the pressure cooker...

I don't si now. I haven't si-ed for 8 years. The last time I cut/si-ed was 22nd April 2003, though of course I will always bear the scars. There's nothing I can do about that, but I refuse to be ashamed of them, and whilst I hid the wounds at the time, I refuse to cover my scars for the sake of others now. If people don't like what they see then they don't have to look, but I have to live with the scars everyday, and if I allow others to make me feel ashamed of them, then I'm allowing others to make me feel ashamed of myself. There is a stigma to mental illness and depression, but there oughtn't be, and I won't, if at all possible, be ashamed because of the depression I've suffered from in the past, or the actions that depression led to. Depression is horrendous enough without adding extra guilt into the mix. So yes, I have the scars, and whilst I don't flaunt them (I'm not proud of them either - they're just a part of me), I don't hide them away unless I want to, and yes, there are some situations in which I will do that for myself, and sometimes for my mother as I know that she can sometimes find it difficult.

Self harm so nearly wasn't enough to keep me alive though, and for a long time I was intermittently suicidal. For years, in fact. It reached a head in 2002/2003, during which time I took several overdoses (very significant ones, far removed from any category of 'a cry for help'), and tried to hang myself. That is where I feel a particular connection to Nn in his final act. Unlike Nn, I was found just as everything was going black and disappearing into a haze somewhere beyond the sound of the familiar wheeze of constriction, this time from strangulation rather than asthma, but the same sound nonetheless. Despite being in hospital with depression at the time, I hadn't expected to be found until after I'd succeeded, and I was distraught when I realised that I hadn't succeeded. Nn was in a different physical situation from me and had no interruption, but I do know something of what he experienced in those last minutes of his life, and that has made me reflect a great deal on his death, his life, my life, my past depression, my subsequent fights for life through multiple asthma attacks, the whole complicated thing of 'life'. It fills me with such huge sadness that Nn felt such despair that he chose to kill himself ... and I remember the despair I felt myself when I was suicidal. I remind myself that this is remembered despair, not the feelings of today, and I remind myself of the fantastic moment of miraculous cure.

You may not have seen the list of 'Facts about me' near the bottom left of this page, but there's a fairly random list down there of snippets about me. Third on the list is, 'at 4pm on Monday 5th May 2003, walking down one of the grimmest streets in Newcastle, I experienced a miracle.' This was at the height of my suicidality. My world had been the deepest, darkest shade of black imaginable for what seemed like forever. I couldn't remember what it was like to live in a colourful world, or to feel that I was doing anything beyond existing. I had no hope of anything ever changing. At the time I was being desperately let down by the mental health services, who I believe were actually making my situation worse, and I was so nearly, so very nearly successful in my suicidal acts. And then 4pm on Monday 5th May 2003 happened. Nothing had happened to change my world; no event had taken place; nobody had said anything or done anything; no change had been made to medication; but suddenly everything changed. I was walking down Westgate Hill in Newcastle, which several years earlier had been voted the 4th grimmest street in the country (what an accolade!), when I suddenly felt something I didn't recognise. It worried me that I didn't recognise what I was feeling, and the worry caused me to glance up from my fixed focal point of the grey pavement just ahead of my feet. The grim street was still shades of grey, but the grey buildings were topped with bright red tiles and looked over by an intensely blue sky. My eyes hurt with the colour. It was like regaining sight after years of darkness. It was astounding, astonishing, amazing. And that feeling, it was becoming more overwhelming. What was it? It was the feeling of being alive! I wasn't just existing, and I wasn't in a monochrome world any more! I was alive and living in technicolour! I texted my mum. I texted that for the first time in years I suddenly felt alive! I have been alive ever since, never having returned to those depths of depression. Sure there are low times, especially after near-death experiences, or other significant events, but they're different from depression - they're normal responses to difficult circumstances/situations/events, and they don't last. Monday 5th May 2003 was my rebirthday, a miracle day. I was a Christian before this wonderful event, for many years before the event, and I never stopped being a Christian throughout my depression, but I felt forgotten by God. I felt as though I didn't matter, and questioned why I felt that I should matter as there were so many other, much more important things going on in the world, but it saddened me that I didn't matter even to God. And then God showed me that He hadn't forgotten me, and that I was as important as anything else on His 'to do' list, and that He really is there even when we think He's busy with something else. I don't think anyone ever expects a miracle to happen to them. I certainly didn't. I feel incredibly privaledged to have experienced a miracle, and for it to have been so completely life-changing ... life-giving. I wish with all my heart that Nn could've had the same miraculous event occur in his life. I am so thankful that God stuck his oar in when He did with me, saved me from myself, from my suicidality, and gave me colour and life again. It's just over 8 years ago that it happened, but I remember it as clearly as if it happened today. It still fills me with awe, I still get excited when I think about it, and I know that I am truly blessed.

Let's get positive

2011-05-17T00:56:00.000+01:00

Okay, it's time for some positivity around here. Things have been tough for a while so it's time to spend a little while thinking about and appreciating the good things. Here goes:

+ Holidays and time away with family.
+ Baby cuddles with J, the newest member of the family who will be 12 weeks old tomorrow.
+ Nephew therapy - J, O, and D are all adorable and life-affirming.
+ The restorative qualities of the countryside.
+ Luxuriously long baths with easily controlled water temperature that's just perfect.
+ Friends. They're such special people who give so much, and are a true blessing. I am very lucky to have so many wonderful people in my life, and I thank every one of them for being the person they are.
+ A five minute break in the rain on a wet day when the sun peeps through the cloud and reminds you that the gloom will pass.
+ Cross-stitch and creativity. I love that I can be creative and relax with a little sewing. I'm working on a cross-stitch for baby J - a Mr Men height chart - and I did a little this evening before coming to bed.
+ The ability to consider various perspectives of an argument. I mention this in relation to my studies at the moment, rather than any actual argument. I'm slowly getting round to thinking about the final essay for my OU course, and while we were watching Bhaji on the Beach this evening (a set 'text' for my course) I was having interesting thoughts about it in relation to the essay.
+ Interesting people around me with whom I can have interesting conversations on a wide variety of subjects.
+ Meds that finally seem to be making a bit of an impact on the fluid retention :o) It hasn't gone yet, but progress has been made and I'm slowly deflating :oD
+ Blackbirds. I love their song. This year there's been one for the first time (or the first time that I've noticed) around my flat. There's also one that comes and sings in the courtyard outside the room I usually have in Ward 29, and it didn't let me down during this latest admission. I heard a cheery little blackbird this evening too as I went for a five minute wander with O and D before their bedtime.
+ Dongles and mobile broadband! It is by the power of such things that I come to you now, and through which I'm able to keep up with my online friends even while I'm away or when I'm in hospital.
+ Werther's Originals. A sweet that I'm not allergic to, and that I particularly enjoy, although I usually only have them when I'm in hospital as I seem to forget about them the rest of the time.
+ Good quality sleep. There's nothing quite like a restful night.

Speaking of sleep, I think it's about time that I got on with getting some. I feel better for having done my list of positive things though :o) It can really help to concentrate on the good things sometimes, and to remind oneself of what they are and how lucky one is to have them.

What are the good things in your life right now?

Home and away

2011-05-14T23:40:00.003+01:00

I made it home from hospital! I'm not 100% well, I'm still having some renal difficulties, and I'm still terribly swollen with water retention, but I'm okay enough to be out of hospital. Hospitals are great places to pick up infections too, so the sooner one can escape the better, especially if your immune system is suppressed, as mine is from the huge doses of long-term steroids. I'm already a chronic carrier of MRSA, and I don't need anything else to take advantage of my vulnerability. Besides which, I was getting miserable just from being in hospital for so long (18 days I think) and with the various complications that had already occurred. Being MRSA positive is great for getting you your own room (you have to be isolated from other patients) and therefore some privacy, but spending 18 days mostly on your own with life-threatening things happening to you, and on the back of your step-brother's suicide, is not always the best thing for one's mental health. Yes, in that respect I was more than ready to come home, and as I've said before, there's a certain amount of physical getting better that I believe can only happen once you get home anyway. So I escaped yesterday (Friday) evening around 5pm I think it was, and was sat on the sofa with Zach purring all over me 15 minutes later >^..^< I did a huge amount of nothing last night, although W popped by to see how I was doing, and I began to think about coming away.

Last year we had a family holiday in North Yorkshire over my mum's birthday - a gathering of the clans consisting of Mum and J (step-dad); my brother M, his wife, N, and their boys, O and D; my brother C and his wife S; and me. We all had such a lovely time at the cottages we stayed at that we decided to do the same thing again this year, albeit a few weeks later than last year's trip, and this time with the addition of C's and S's 12 week old baby, J. It was planned for this week, and still happening whether or not I'd be able to make it because of being in hospital. It was looking unlikely that I'd be able to go and I think the prospect of missing out was perhaps adding to some of my miserable feelings of the past few days. I have made it though! I am currently in a cottage called 'Badger' in a place not very far from Thirsk in North Yorkshire. My nephews O and D are asleep in the room next to me, although they took a lot of settling tonight, and only eventually went off to sleep after many times of being put back to bed and the last thing O (4) was heard to have to said to D (2 1/2) was, 'That's it, D. I don't think I can do any more rampaging tonight.' :oD Mum and J are asleep in the room across the landing. The rest of the clan are over in the other cottage we've rented here, 'Fox'.

I had a slow morning this morning, gently gathering things together; sorting out meds; stroking Zach; being purred on by Zach; being eaten by Zach (he wasn't at all happy to see me packing a bag so soon after such a long disappearance, and he was definitely letting me know of his disgruntledness); going to the post office to collect a parcel I'd missed being delivered whilst in hospital; making bread to bring away; sorting out some OU stuff; and filling the car with petrol. All very relaxed. All quite tiring given that I only got out of hospital yesterday evening and didn't sleep brilliantly as I never do on my first night out of hospital. I then pootled off southwards at about 4pm, arriving 66 miles away from home about an hour and a half later. The drive was easy with very little traffic, which reduced the number of crazy drivers to negligable. I have to say that I was quite exhausted by the time I got here, and I haven't been out of the cottage since landing, but I'm hoping to be able to relax, unwind, destress, recuperate, heal, and renew my spirit with this family time in the countryside. I will have to do some study while I'm here as I have the final essay for my undergraduate degree with the OU to do. It's supposed to be in by 27th May. I've applied for an extension because of my hospital admission, but after my experience of being refused last year despite being very ill I don't hold out much hope. Anyway, it'd be good to get the essay (ECA - End of Course Assessment) done and sent on time if at all possible, even if it's not going to be my best work. I have to keep reminding myself that I only need to pass this course, and that the level of pass doesn't affect the classification of degree I'm going to get as I've done things backwards (as is my way) and I'm finishing my degree with the foundation course I should've started with, and foundation courses don't contribute to degree classification. Of course it'd be lovely to get a Distinction if I could (and my overall course assessment scores fall well into this bracket), but it doesn't affect anything if I don't, so I actually only need to get 40% in the ECA to pass it, rather than 85% for a Distinction. So yes, I have to do some study while I'm here, but I also need to let myself be restored in body, mind, and spirit. The past few weeks have been very difficult. Here's hoping I can go home on Thursday feeling more like myself.

What next?

2011-05-10T21:37:00.000+01:00

I feel rubbish and I'm afraid this is likely to be a bit of a moan.

I guess I'll start with the good bit, which is that my lungs are improving and I'm now off the oxygen. My oxygen sats are a little on the low side, but that's fairly normal for me when I first come off the O2 and my body gets used to doing without the extra. It's fine. They'll sort themselves out.

All is not well though, and the bladder and kidney spasms I was experiencing progressed into renal colic with excrutiating pain that ultimately caused me to pass out and end up in a very distressed state. Yesterday was a day of total agony with the renal colic, and today hasn't been great either, although it hasn't been as protracted as yesterday. When I'd been transferred from the RVI to ward 29 I had gone into urine retention, so had needed to be catheterised. There was thought today that the catheter might be aggravating my bladder and making the renal colic worse so it was removed this morning, and it does seem to have lessened the pain a little, although when it comes it's still bloody awful. However, it also seems that I've developed a urinary tract infection, with blood in my urine, which is making me feel rubbish and ill, and totally worn out. It's one thing after another, and all on top of Nn's death, and I feel like I'm running out of resources.

Then there's the whole thing of how I ended up in here this time - the allergy and subsequent asthma attack. Social Services are having to do an investigation into what happened because of the severity of the consequences. This is probably a good thing, but it is somewhat anxiety provoking. I don't want the carer who prepared the fated meal to become a scape-goat for the inadequacies of the system, and I don't want to be faced with negative attitudes myself when I eventually get home and have the carers back. I don't particularly want the same care agency to resume my care, because I think it might be quite difficult and ... well, can I trust that the same mistake won't be made again? Perhaps it'll mean greater vigilence by the carers when preparing my meals, but not necessarily. I don't know what the answer is. Anyway, the main thing is this protection of vulnerable adults high risk assessment investigation that's going on. A social worker conducting the investigation spoke to the staff on ITU when I was there, and they've also spoken to W to ask for her account of events. They were in contact with the ward here last week asking if they could come and interview me 'at some point in the next day or two', which I presumed to mean they'd come last week, but nobody came. The ward sister contacted Social Services about it yesterday and apparently they still plan to come and interview me, but didn't say when it'd be. In the meantime they sent up one of the hospital social workers to ask a few of the questions they had, although she also said that the investigating social worker would definitely be coming to interview me along with someone from the care agency! It's hanging over me now, causing me stress. I'm trying not to think about it, but it's difficult. It seems like a huge thing to be going on, and totally out of my control. Of course I can see that it needs to be done, after all the event nearly cost me my life, but I don't have much in the way of resources to cope with the enormity of it ... and as I say, I don't want the carer involved to be scape-goated. The agency are contracted to provide a particular service for me so they should be able to provide staff with adequate training and skills to provide that service. The fact is that they don't, so it's the system that's really at fault, not the individual. I just don't know what's going to happen or what attitude I'm going to presented with when I'm interviewed.

Sometimes life gets on top of me. Now is one of those times.

Slow progress

2011-05-09T00:47:00.001+01:00

Not long after my last post I was very ill. The allergy progressed so that I was very itchy, bright red, nauseous, vomitting, wheezing, and beginning to swell. I took lots of antihistamines, which reduced the swelling and lessened the itching, but my breathing continued to deteriorate. I texted W to say what was happening, and she came and took me to A&E. At my first time of texting W I hadn't been sure whether or not I'd need to go to hospital, but in the end there was no doubt about it, and although we ought really to have called an ambulance W whizzed me up to A&E herself. Things were bad, but they weren't dreadfully dreadful, although I did get sent straight through for immediate treatment without any waiting around, and then I found myself in resus. I spent the night in the monitoring bay of the Emergency Admissions Unit (EAU) unfortunately getting worse, and increasingly tired, but somewhat overlooked as the place was busy with too few staff and several poorly patients. The disadvantage of being somewhat used to severe breathing difficulties is that I am now able to keep relatively calm through it all, which may seem like a good thing, and is to a degree, except that it can give a false impression of how ill I actually am. The gentleman in the bed next to me was quite distressed with his own breathing problems through the night so the staff concentrated on him, which is good, except that it menat that my needs weren't observed until much later. By the morning it was clear that I was in quite a desperate situation and I ended up in ITU on BiPAP for 22 hours. W was with me a lot of the time, despite having work to go to and a huge essay to complete for the last of her graduate diploma. And she told me that when she was leaving ITU for work at one point the sister pulled her aside and said that although I was a doing a little better I still may not survive. This doesn't give me any information I didn't already know for myself, nor W, but when it's said it confirms the truth and is hard-hitting. I'd much rather know these things for sure though - be told the whole truth - so I respect their honesty, and I think W does too. It's hard though. It's always hard. Thankfully, I did make it through and eventually I made it to the respiratory ward, although my usual ward 29 at Freeman didn't immediately have any beds so I had to go to the RVI resp ward. I don't like it much there. Maybe it's partly because it's not where I'm used to and I don't know the staff, but the whole atmosphere feels frenetic and disorganised, and staff-centred to me. They don't know me. I don't know them. They don't know that I know my illness better than them and they seem to find it hard to accept the fact that I do. I was still pretty ill while I was there, and I was getting more stressed out by being there too, so it was a huge relief when I was eventually transferred to Ward 29.

It's very slow progress, and I've been in hospital for 2 weeks now. The breathing is eventually settling and I managed to get off the aminophylline infusion on Friday (at least I think it was Friday...). I've now be transferred back onto oral steroids from hydrocortisone injections and have stopped having to have the intravenous antihistamines as well. All that is good. I'm still on oxygen at the moment, but a fairly small amount now. I'm utterly exhausted though. My body definitely feels as though it's been poisoned and as though it's taking a long time for the toxins to be shot of. Actually, the main problem now is that I have absolutely horrendous water retention. As you know, I've had some difficulty with water retention in previous admissions, but this time it's the worst it's ever been. My skin is splitting because it's so stretched with fluid. The stretch itself is painful. Most of the fluid is around my middle and my hips - hugely gathered around my hips so that I must be almost double my usual size (no exaggeration). My body is so overloaded that my bladder and my kidneys keep going into horrendous spasm, producing pain like I've never had before. I'm now on some meds to help with the spasms, and they certainly help the intensity, though they can still be protracted and very painful indeed. I'm on fairly high doses of diruetics as well as I have so much water to shift and my body wasn't shifting any of its own accord, but still there doesn't seem to be any significant reduction. The nurses say they can see the water sloshing around inside me when I move! I can't fit into my pyjamas. I can only stand to have the hospital gown tied loosly around the top of my neck because any pressure at all on my skin hurts. I did manage just about to squeeze into the bath for the first time today, but it wasn't easy and it was painful. It's demoralising. It's painful. It's embarrassing. It's uncomfortable. It's miserable. Everything hurts. I'm so heavy with the extra fluid that my back hurts if I sit for long or stand for just a few minutes. The weight of the fluid around my middle and up my chest is pressing on my lungs and making breathing harder, and a few days ago an x-ray showed some fluid on my lungs because of the oedema, although this at least seems to be clearing.

I'm miserable. I feel like a beluga whale. I'm sore. I'm in pain. I'm exhausted. My mind is in a blur from the events of the past two weeks and the unexpectedness of the allergic reaction. I'm thankful and surprised to be alive, but I'm so worn out and so sick of hospital.

Something I could do without

2011-04-25T21:37:00.000+01:00

When I got the news about Nn I felt as though I couldn't cope with the stress of my stupid carers coming so I cancelled them for two weeks. It seems incredibly ridiculous that the people who are supposed to be helping me are actually causing more stress, but they are. Today was their first time back here and I was dreading it. I received the time sheet on Saturday so knew who to expect, and was dismayed to see that I'm stuck with the most incompetent of them all for each of this week's visits.

Tonight I wanted Stupid Carer Woman (SCW) to make a pasta sauce. I gave her a recipe. A very easy recipe for a basic tomato sauce with the addition of mushrooms and fresh basil, reminding her that both these ingredients would need to be very well washed because of the stuff that gets sprayed on them and to which I'm allergic. Fine. Left her to it while I finished off what I was doing on the computer, until she called me back asking if 'saute the onions' means to slice them. Feeling despair begin to spread over me I explained what 'saute' means, and went through the rest of the recipe for any more difficult words ... such as 'cook'!

I went off to have my bath, afterwards coming back through to find that what SCW had made actually looked okay. A huge surprise. I had my dinner about an hour ago, and was equally surprised that it tasted okay ... not fantastic, and it had a bit of weird after-taste, but okay. However, I'm now very itchy scratchy, rather wheezy, and my insides feel squiffy. I suspect that SCW didn't wash the mushrooms and basil very well, because this feels very much like an allergic reaction to something, and I haven't eaten anything else that I could be allergic to. I'm hoping beyond hope that this doesn't progress into anaphylaxis, but either way, this is something I really could do without.

...Forever and ever, Amen.

2011-04-21T20:01:00.006+01:00

It was Nn's funeral on Monday. It was in Dundee. I went north on the train, staying in Edinburgh, and doing a day-trip to Dundee. I saw seals in the Tay as the train went over the bridge into Dundee station. Seeing them made me smile in the middle of all my terrible sadness, and in some odd way it seemed apt that I should see these wonderful, wild animals enjoying the sea whilst on my way to Nn's funeral, because Nn loved the sea, was a very keen surfer, and could be somewhat wild too. My older step-brother, Nl, took Nn's surf board to the funeral and placed it at the front of the chapel before the service. He talked about Nn and his love of surfing in the eulogy. The last time Nn used his surf board was with Nl a very short time ago and apparently Nn had been full of life...

...Nn's guitar was placed at the front too, along with a bottle of vodka and his Newcastle United shirt - all things that meant a lot to him and made a mark on his identity. Nn played himself out of the world - a recording of him playing his favourite song of his own composition was played over the speakers as his coffin went down into the whatever-it's-called-at-the-crematorium-where-the-coffins-go-at-the-end-of-the-service. He chose when to exit the world, so it makes sense to me that he played himself out when he left the world completely ... except that he can't take my memories of him away, or the Nn-shaped hole that he's left behind.

When on the train from Edinburgh to Dundee I suddenly felt like I didn't want to do what I was doing. I didn't want to be on the train to Nn's funeral and I didn't want to go. Except that I did want to go and I wouldn't have missed it unless there was no way I could get there or I was too ill. Really, what I didn't want was for Nn to be dead and for me to be going to his funeral, and I knew that going there would make it all too real and undeniable. It did. It is. It is all too real. But the funeral also made Nn's suicide more unbelievable. It has been shocking. I don't mean that in a 'how dare this happen' kind of way, but rather that I am shocked/stunned/surprised. Everyone was. My older step-sister, A, said as much in her talk during the funeral service - that absolutely nobody had expected this. You know, he'd been at work in the morning. He was due back at work later in the day. Instead he booked into an hotel room...

Some have said to me that I must surely be angry with Nn for killing himself. I'm not. I don't think I ever could be. Why would I be angry with someone, particularly a family member, for being so desperately unhappy? Yes, I am angry that Nn is dead, but that is far from being the same thing as being angry with Nn. He obviously couldn't fathom any other way out of his despair, and he made a decision not to suffer any more. I respect Nn. I respect his decision. He did what he had to do for himself, and I accept that, even if it hurts like hell that he's dead.

Nn is dead.

I still find that difficult to see on the page/screen. It's one of those things that makes it both too real and yet more unbelievable.

I don't feel like I'm being very coherent today. Maybe it's because I'm still trying to make sense of it all myself, and that I'm trying to make sense of my emotions that are all over the place. Right at this moment I feel a little disconnected from my emotions, like it's the safest place to be emotionally or I'll become overwhelmed and dissolve into tears again, which is what I do at regular periods throughout the day. Other times I remember Nn and I smile, or feel the remembered frustration that siblings can induce when you're young. A lot of the time I feel terrible, terrible sadness, and almost all of the time something is reminding me of Nn.

You know, it was my birthday on Tuesday. It felt almost inappropriate to have a birthday this year. I got home from Scotland around lunchtime and a little later on I met W in town. We went for a quick drink in the sunshine before my OU tutorial. I was exhausted and didn't really have it in me to concentrate very well through the tutorial, but I did the best I could, and then W, L (from my tutor group) and I went for another drink. I had several, partly for birthday celebration and partly for inappropriate mind-numbing. Nn would have approved.

I want him back.

Lost

2011-04-16T23:51:00.001+01:00

I've been wanting update my blog over the past ten days or so, but I don't know what to say. I have been lost for words in a very real sense, yet my mind has been full to bursting with thoughts and memories, and I've been overflowing with feelings and emotions. Nn's sudden and unexpected suicide has had a huge impact on me. Everything I do, everywhere I go, everything I see sparks a memory, although rather strangely most of them have been from when we were both quite young. Nn as a boy scratting in his Lego, always making some amazing vehicle that would end up being blasted to pieces by his toy helicopter, usually while he/we watched The A-Team.

Saturday afternoon trips down to the little cinema - The Forum - in Hexham for a cheap showing of something or other. I think that's where I saw The Empire Strikes Back.

Coming back from a holiday on the Isle of Skye and stopping at a wonderfully long and deserted beach on the west coast of Scotland not too long after we'd arrived back on the mainland. A bright, sunny afternoon that warranted a break in the drive. Dad and K (my step-mum (she died in 1996 and I have another step-mother now - B)) went for a stroll up the beach; I don't remember what my brother M was doing, though he may have been with my brother C who was running up and down the beach and in and out of the sea in his usual hyperactive way; while Nn and I were mesmerised by the millions of tiny sand eels that were wiggling their way out of the sand and flapping, seemingly desperate, on the surface. We thought that maybe they would die if they were left to their own devices so the two of us set to task 'rescuing' them. We each picked up as many of the wrigglesome creatures as we could, ran to the water's edge and tossed the sand eels back into the sea, then ran back to rescue more. It was a fruitless task because the sand eels popped up out of the wet beach quicker than we could gather them and throw them into the water, but we spent the best part of an hour trying to save the lives of these little creatures. It was only when a fisherman who'd been gathering sand eels as bait, and had been watching us for quite sometime, told us that the sand eels would be fine if left on the beach that we gave up, although I'm not sure that either of us really believed the fisherman. He was the only other person on the beach besides our family, and he had a bucket full of sand eels that squirmed like live spaghetti.

Later on that long drive from Skye to Newcastle (an 11 hour drive!) we saw a pair of golden eagles. Nn loved birds of prey and had spent all week hoping to see a golden eagle. Dad pulled the car in by the side of the road where several others had also stopped to look at the birds. Our binoculars were buried somewhere deep in the car amongst the camping stuff so we borrowed those of one of the other people who'd stopped. Nn was beside himself with delight. A golden eagle! Two golden eagles! He'd seen the elusive birds for himself, and the only thing that would've made it better for him was if he'd been able to reach out and touch them as they flew.

Smiles. Big smiles. He so often had a great big smile when he was a young boy. Of course this changed when he became a teenager, simply because he was a teenager. In his early teen years he'd spend hours in front of the mirror, preening himself, trying to look like Tom Cruise (and there was a passing resemblence), and then he'd practise clenching his jaw in just the way that Tom Cruise does in films like Top Gun. Nn loved Top Gun. We had it on video and he'd watch it again and again, sometimes whilst scratting around in the Lego, but later making Airfix models of Tomcats (his favourite fighter planes) or Phantoms (my favourite fighter plane ... not that I'm hot on fighter planes - it was a case of sibling infection). We both got a cheap airfix plane from the market one weekend. We thought they were a bargain until we got them home and opened the instructions. There were no diagrams and the writing was all in Japanese or Cantonese or something. Neither of us were going to be beaten by this, and we perservered, but it was no easy task and there was a lot of cursing that went on in the living room that day while we sat there trying not to superglue ourselves to the furniture in our frustration.

And later, much later. Several years later and a different house later, waiting for ages, and eventually knocking in the door in desperation while Nn sat strumming at his guitar, composing songs on the toilet.

I came across a recording online of Nn in interview and playing a couple of his songs (and one by someone else) on a Scotish radio station. It made me cry. It's not that he was the best of song writers (though he wasn't bad), and his untrained voice could be rough around the edges, but hearing him sounding happy in the interview, hearing his liveliness, although also hearing a sadness in his music made me cry. It made me miss him more and more. It made me desperately sorry that he had become so desperately unhappy and lost ... so unhappy and lost that he hanged himself...

...It's his funeral on Monday. I'm going up to Edinburgh tomorrow to stay with Mum and will go to the funeral from there. I'll only go to Dundee for the day, going back to Mum's in the evening and coming home on Tuesday. I'm going on the train. I usually drive to Edinburgh, but I thought it best not to in the circumstances. Too emotional a trip.

So sad. So terribly sad. I keep wishing it'll turn out not to be true, that Nn is still alive... I keep crying because I know it is true and he was so unhappy. I cry for his desolation as much as I cry for the loss of such a fantastic person. Poor Nn. Poor, poor Nn...

All mixed up

2011-04-07T23:45:00.003+01:00

It's been a strange time since I last posted. My lungs are still on the slip, and it's getting tedious. I've had a load of study to do for my OU course with an assignment that had to be in by today, and which I somehow managed to get done and sent off yesterday despite being exhausted. The exhaustion isn't helping the POTS and I've been feeling quite ill with that, and the tinnitus has been particularly bad. This in turn has made sleeping really difficult, and for several days/nights I haven't got to sleep until at least 6.30am, but in an attempt not to get the days completely upside down I've only given myself about 4 hours sleep. I've also thought that still getting up at a fairly reasonable time might mean that I have more chance of sleeping the next night, but it doesn't seem to have worked that way. And then today happened and my brain has turned to mush.

I got a phone call this morning from my brother M. He'd had a text from our step-sister A. Yesterday our younger step-brother Nn killed himself. I'm in shock. I don't know how to feel. I alternate between crying and numbness, and between intense activity (as much as the lungs allow) as distraction and complete inertia and inability to do anything at all. I can hardly believe Nn is dead... and seeing those words together on the screen make it all so real and stark - my brother (albeit a step-brother) is dead. Dead. What a horrible word.

It's so tragic, so awful, so unexpected ... yet Nn had struggled for years so maybe it shouldn't be such a shock. But it is. It really is. He'd messed things up for himself along the way, but he'd always had huge potential, and knowing him when he was younger you'd never have predicted this as the inevitable for him. Never. He was a talented actor, a good musician (although mostly self-taught), something of a comedian. He always thought he was about to make it big, but it never quite happened for him and instead of doing the things he enjoyed and was good at, he spent the times he was well enough to work (mentally well enough) mostly being a salesman in various designer clothes stores. He hadn't been well enough to work much over the past several years. He'd done a bit, but not a lot, and I don't think the drifting helped him, because he also lost most of his enthusiasm for the music, acting, comedy. And yesterday he lost himself entirely, and we have lost him too... but it's a lost from which he can never be found again...

I have a million and one things whizzing around my head at a thousand miles an hour, yet I feel like I've lost my words. A few friends have been in touch since I've told them about Nn, and a couple of them have reminded me that they're here for me if I want to talk. I kind of do, but I have no way of saying what I'm feeling. Even writing this is a challenge, not just because of the content, but because I don't know how to express the complexities of my feelings.

...Too much. So tragic. Such a waste of a young man who could've been so much. So horribly sad. He was thirty four.

I can't comprehend it, except that I can because I know myself what it is to feel so desperate that killing yourself feels like the only possible way out, and although I'm well beyond those feelings I've been reminded of them today. The memory of them has come flooding back, and that's making the news of Nn's suicide all the more difficult, even if it does give me an understanding that perhaps most don't have...can't have.

I can't think straight. This is a ramble. I don't care that it's a ramble, but I hate it that I can't make anything make sense even to myself - not just the situation, but my own words.

Nothing is right.

My step-brother is dead.

Still here

2011-03-25T23:43:00.000Z

Apologies, all, for the lack of posts recently. I'm still here, but have been a bit busy trying to catch up with my OU studies whilst also writing my submission for the Postgrad Certificate Memoir Writing module I recently finished. In the end I did three short-ish pieces for the submission, which I'm reasonably happy with, but it's the tutor/marker that has to like them so I'm hoping she does. I did the commentary - self-critique of the pieces and process of writing them - on Wednesday, and although I wasn't brilliantly happy with it I decided that it'd do and I put the submission in this afternoon. It feels good to have got it done and out of the way, and it feels good to have confirmed with Newcastle University English Department that I'm going to go on and complete my PGCert this academic year ... and go onto the MA in October! I still have to finish my undergrad degree of course, but I've only got a very small amount of that left to do - one proper assignment; one small, reflective assignment; and the extended essay. I'm at the thinking stage of the proper assignment, with ideas floating around my head, so I should hopefully get it done in the next week.

OU studies have been delayed during this past week and bit not only because of the PGC submission, but also becasue I haven't been feeling too grand. My lungs aren't behaving very well and when I went to the ward last week for my portacath flush, J (Charge Nurse) offered to find a bed for me :o( I was tight and wheezy, but not awful so said I'd prefer not to have to stay if I could avoid it. He said okay, but also to email him when I think I need a bed reserving, which neither of us think will be too long :o( I'm wondering if part of it is due to a rise in pollen as I've been sneezing a bit and my eyes have been itchy, though I'm sure it's also just part of the pattern of things. It seems to be a fairly slow decline as I'm still not at the 'really struggling, but somehow managing' stage, despite having been slipping for ten days or so. It can stay slow for the moment, because I've got things I want to do, like go to my friend's graduation on 8th April... Hmm, I wonder if I'll last two weeks...I hope so, but I also hope that I'll still be well enough to enjoy the graduation, despite being on the slip... Hmmm.......

I've been very POTSy today as well as the lungs not playing properly. I had an awful night's sleep last night with the most horrendous, stabbing headache that somehow throbbed at the same time as being stabbing. It kept waking me up, and it sometimes felt like my head was literally going to split in half. It intermittently continued through the morning and early afternoon, and although it abated later in the day I've still been feeling fairly rubbish and completely wiped out. The wiped-out-ness has most likely been contributing to the POTSiness, and I've been good for nothing other than sofa surfing. The only thing I've done today is take my submission to the university (as I said before), and I only did that today because I didn't want it hanging over me through the weekend when Monday's the cut-off date and there's no saying whether Monday will be any better.

I'm off to bed now and hoping for a much better night.

Appointments

2011-03-15T23:55:00.000Z

Last weekend I was approached by one of my neighbours while I was out shopping in the local small supermarket. She's someone I've seen around a lot, but never actually spoken to, but this is an area with a good sense of community so it wasn't much of a surprise that someone I frequently saw in the street should stop to speak to me. What was a little surprising was that she was asking me about my care needs and what care I currently get. It turns out that she used to be an occupational therapist, took a career break to have children, and now that they're all at school she wants to get back into work, but OT jobs seem to be a rarity so she's thinking of becoming a carer or PA for the time being. She was asking which agencies my carers come from, so I told her and explained that they're sub-contracted from Social Services. So then she asked about whether I'd ever considered getting direct payments so that I could choose my own carers, and I explained that it was something I'd recently been thinking about, but I don't think it's possible as my care is now paid for by the NHS after the Continuing Care Assessment I had last year. Anyway, she was lovely and I said I'd be happy to give her the phone numbers of the agencies that provide my carers in case she wanted to get in touch with them about employment. She popped round to my flat a little later that evening and we had another lovely chat, during which she asked if I'd consider employing her as my carer, and that she could supply references and get a CRB check etc. Although this might seem a bit odd given how quickly and unexpectedly this has all come about, she is actually someone I would consider appointing as a carer (providing she can cook! ;oP ) if I could get direct payments. I decided I'd enquire about the possibility of direct payments and found the address to email the right department. That was on Friday/Saturday night, and I had a phone call back from them on Monday morning, but unfortunately the news wasn't good, and it seems that because I now have my care paid for by the NHS then I can't get direct payments, which seems not only daft but somewhat unfair. Why shouldn't I be able to choose who my carer is just because of the funding body? The social services person who phoned me back (it may even have been a social worker) did give me the phone number of the 'nursing assessors', whoever they might be, who may be able to help, and a friend of mine who's a social worker has said that it may be that something akin to direct payments is an option, but with a different name. I've yet to contact the nursing assessors, but I will do when I've got a bit of time not taken up with study and hospital appointments.

I've had two hospital appointments since Thursday. The first was with my asthma consultant, Dr H. I wasn't expecting anything much as there are never any new treatments on the horizon that'll be suitable for me, and sure enough, this is still the case. However, Dr H is unhappy at the huge dose of predisolone I'm on and have been on for well over a year now - for the past eighteen months I don't think I've managed to get my pred dose below 85mg, and at the moment I'm on 100mg! This is down from the 125mg I was on at the beginning of the year, but not by much and it's still an absolutely enormous dose. Now it should be that a corticosteroid is a corticosteroid is a corticosteroid, but Dr H is wondering if I may respond better to another one - not pred - so we're considering changing over to Kenalog. He said it's tricky to work out comparable doses of Kenalog to prednisolone, and he also explained that Kenalog is given as a depo-injection every few weeks, rather than by tablet. This would kind of be an advantage I suppose as it'd be one less medication (and a whole load of tablets) to have to think about, but I guess the disadvantage is that the dose can't be varied so if there's a brewing splat I don't know if I'd have to up my steroid intake with extra pred... I guess that'd be something to discuss with Dr H, but the final decision on Kenalog hasn't yet been made. We're both going to think about it over the next few weeks and then perhaps come to a decision when I next see him. I'm hoping that this will be in clinic in May, but I'm not convinced I'll make it that long without another splat. The old breathing bags are being quite grumbly and unpredictable at the moment, and my peak flows are more erratic than usual with an emphasis on being low :o( I'll keep you posted about all that.

Today I had an appointment at the Falls and Syncope Clinic, and again I wasn't expecting any miracle cures, and again I was right that there aren't any miracle cures. However, the doc does want to see if they can get me any better than I currently am, with less passing out, less falling about, less dizziness, less POTSiness and vasovagal syncope-ness all round. He said that the first thing to do is to get a 24-hour blood pressure monitoring, so he's put me down for that between now and my next clinic appointment. He said they monitors seem to be coming available quite quickly at the moment so I may not have to wait too long for that, which would be good, especially as he wants to see me back in clinic in six weeks time. After that there are a couple of possibilities primarily targeting my tendency for low blood pressure (and vasovagal syncope), the first of which is the mineralocorticoid Fludrocortisone. I think it works by causing retention of water and therefore raising blood pressure, but of course, as a steroid, it has all the possible side-effects of steroids too ... not that that's going to be increased very much from what I'm already on for my lungs. To be honest, I'm not thrilled with the thought of intentional water retention after my miserable experiences of unintentional water retention, so I'd prefer the second option - Midodrine. I don't yet know a huge amount about midodrine, other than it raises blood pressure (and a very little bit about how it does that), and that it's not currently licenced for raising blood pressure so it'd have to be prescribed off-licence. The doc explained some of the potential side-effects, the most notable being that it can reduce potassium levels, which may be a concern as my nebs can do that too and low potassium levels can be dangerous to heart function (and other organ systems too). The other side-effect he said that some people find intolerable is a kind of goosebumpy feeling as the med makes all your hairs stand on end. I'm not sure which of those two drug options I'd prefer. The doc said he'd prefer to try fludrocortisone first, but I think I'd be more inclined to try midodrine first, though I suspect that at the end of the day it'll come down to the doc's preference, not mine. Before a decision is made, though, we'll see what my 24-hour BP monitoring shows.

Future plans

2011-03-09T22:35:00.000Z

I'm unexpectedly reconsidering the timing of things with my postgraduate studies. I started the postgrad certificate (PGC) in creative writing this academic year, planning to do it over two years and then go onto the MA in September 2012. The PGC is 60 credits made up of three modules each of 10 credits and a portfolio/dissertation of 30 credits. When doing it over two years you do one or two modules in the first year, and the remaining module(s) and the portfolio in the second year. I was planning on doing two modules this year - I'm coming to the end of my second module at the moment (last class tomorrow evening) - and then hoping to top up my credits towards the MA next academic year while I finish the PGC, but it turns out that you can't do that. Apparently if you do well enough on the PGC then you get automatic acceptance onto the MA and exemption from part of part 1 of the MA as well, but in order to do these things then you have first to pass the PGC. I was discussing all this with someone in the Newcastle University English department admin office (someone who knows everything about everything in the department) and she suggested that I consider finishing the PGC this year and go onto the MA this September. Part of my planning to do the PGC over two years was due to my on-going studies with the Open University and not wanting to push myself too hard, and this is still very much a consideration, particularly as the End of Module Assessment (EMA) for the OU course is due in on 28th May and the EMA for what would be the final module for the PGC would be due in on 5th June, so not a lot of space between them. Then there's the fact that the PGC portfolio/dissertation would be due in by the end of August, which is fine, except that I will need some kind of break over the summer. At the moment I'm veering towards finishing the PGC this year, but I haven't yet made my final decision, though I do need to do so in the next week or so.

Decisions such as this would be so much less difficult to make if I could depend on my breathing and be sure that I could stick to a study schedule, but my life isn't like that and I can't guarantee that any plans of any sort that I make will be stuck to. It's frustrating. All I can be sure of is that at some point life will be interrupted by my asthma and I'll end up in hospital, but I can't know when this will be so I can't make plans around it, so instead I have to make plans and try to accept that not all will go ahead. I hate that though. I end up feeling like I've missed out ... which I suppose I have in a way. I don't want to end up feeling like that with my studies... I hope I won't have reason to...

I'm currently wondering when I'm next going to end up in hospital as it's been several weeks now since I was last discharged and my lungs are being rather temperamental. They're not anywhere near awful, but they're twitchy, unstable (as ever), wheezier than they sometimes are, and waking me a lot at night. None of those are good signs, but there's not a great deal I can do about it. I have an appointment in the morning with my consultant, though I don't expect anything much from it as there's never anything that can be done to help, but Dr H keeps an eye on things and makes sure I'm not in dire straights at the time that I see him. If only I could predict when those times of dire straights would be, that bit of life would be easier ;o)

Well, we shall see what, if anything, Dr H has to say tomorrow, and over the next few days I'll keep mulling over my future education options.

Embrace the moment

2011-03-04T21:36:00.001Z

Life is for living, wouldn't you agree? There are times when opportunities arise either to embrace moments of life or look all embarrassed and shirk away from them. Last night I was presented with one of these opportunities, and had one of the most surreal experiences of my life. I had come out of my PGC memoir writing class and was somewhat thoughtful after a couple of the exercises we'd done, but I was fairly cheery nonetheless, because I've been enjoying this module immensely and finding it very stimulating. I'd left the university grounds and was making my way down Northumberland Street - the main shopping street in Newcastle city centre - in my electric wheelchair, when I was challenged to a race. That would be an odd occurence in itself, but what made this particularly surreal was that my challenger was a man dressed as a nun driving a small, white grand piano, adorned with spiralled, blue rope lights, making it look quite magnificent as it came up the street in the dark, blasting out its variations of pop music (of sorts). It has to be said that I was a little bemused by the sight, but also thought it was wonderful with a particular kind of craziness. So having been challenged to a race by this 'nun' I had quickly to decide whether or not to embrace the silliness and possible embarrassment. I was on my own, but the street was still vibrant because the shops were still open, and it being 7.15 on a Thursday night in Newcastle there were more than a few who were already starting their weekend celebrations. They, and many others had heard the nun ask me if I'd like a race and there were guffaws all round, which then developed into whoops of incredulous pleasure when I decided to embrace the moment and accept the challenge. I had to do a little negotiation though as I'd been whizzing down the street and the nun had been driving his piano up the street. At first he was reluctant to go in the direction I wanted to go (I'm not sure why), but when I said that I needed to be heading vaguely towards my bus stop then he relented, and he did the race going backwards. I have to say that I've never before raced a man dressed as a nun who's driving a small grand piano blasting out pop music, but it was great fun. It was, I'm sorry to say, a very short race, but I won all the same :oD And the spectators cheered and laughed and enjoyed the sight of a nun driving a piano racing a woman in an electric wheelchair. And I've been smiling about it a great deal ever since, so I'm particularly pleased that I embraced the moment of silliness and lived that little moment of life, when it would've been so easy to give into the fear of embarrassment.

I've done a Google search on 'my nun' and I've found that he's called Sister Ruth, has her own website, and travels the country doing all sorts of gigs and parties. Great fun! Live life and embrace the moment!

New life

2011-02-28T23:36:00.001Z

It's the end of February, which means that it's almost March, which means that it's nearly spring. There are buds on the crab apple tree in my small patch of mud (aka little front garden), and one or two flowers with plenty more buds on the winter jasmine in the back yard. As yet there aren't any daffodil buds (too early for that up here in the north), but there are shoots popping up here and there, and it won't be long until we see the bud heads, shortly followed by them blowing their trumpets :o) Spring is wonderful. A very welcome return of longer days, warmer weather, signs that nature has just been resting during the long winter months, and the return of life in the world around us.

For all that February has fewer days than any other month, it can be a long, long month to get through. It can be cold, and dark, and with long nights and short days, and a post-new year lethargy. This year February hasn't been so hard to get through , largely because of the anticipation of the arrival of my younger brother's first baby. It was due on 10th. Baby J eventually arrived in the evening of 23rd! Almost two weeks of suppressed excitement in the waiting, but at last he arrived. It wasn't an easy birth and ultimately he had to be born by cesarean section, but he's here and feeding well, and the whole family are doing well, so I'm told. They live down in Cambridgeshire, and although Mum has gone down to see them they've asked that they have a little bit of time to get used to being a family of three before they have lots of visitors. I want to respect that, even though I'm desperate to meet J, so it'll be a little while before I get down there, but in the meantime I have a small mountain of presents to send J, though I need to make a card for him to go with the gifts.

I love being an aunty to O and D - my older brother's boys - and I'm very much looking forward to being an aunty to J as well. My only wish is that they didn't all live so far away, but once my courses are finished then I should have considerably more time to go off visiting, although I'm definitely going to get to Cambridgeshire before then. Definitely.

Things to come

2011-02-16T23:15:00.001Z

I'm getting impatient now. The whole family's getting impatient now. My younger brother, C, and his wife, S, are expecting a baby. It was due on 10th February so it's now six days late. We know it's a boy, but we want to meet him and get to know him. Mind you, it'll be a little while until I do get to meet him as C and S live in Cambridgeshire, so a bit of a trek from Newcastle. Of course, I don't mind travelling, but it's not like I can just pop down the road and drop by for half an hour, and C and S can't cope with my dietary requirements (especially not with a new baby - their first child - to look after) so I need to stay in a self-catering place nearby. There is actually a lovely, small place I stayed in when I went down for C and S's wedding last spring, though of course it needs to be available when I want to go down. Anyway, I digress. The baby hasn't even made it out of his cosy nest yet ... although I do appear to have bought it rather a lot of 'Welcome to the world' presents - lots of clothes and a few other bits. Come on baby, I'm waiting to meet you and welcome you!

It's quite amazing that C is going to be a daddy. C is quite amazing. He's the person I admire most in the world. I can't go into details of his life as I haven't asked him if I can share them with my blog readers (and I don't imagine he'd be all that keen on it, if I'm honest), but he has had the most extraordinary life of anyone I've known. More extraordinary than most I've even heard of or read about. Some of it almost unbelievable. So all I will say is that he was adopted (as I told you in a recent post); has some learning difficulties; was expelled from school at one point; got back into the education system in the end and managed to get some qualifications; got some employment, but was very unsettled and flitted about somewhat; went off the rails and involved in some quite heavy stuff; got out of that, only to fall back into it again a while later; found an ingenious way out; and is now completely out of all of that, working in a responsible job, gaining more and more qualifications as he goes, lives in a picture-perfect cottage in a picture-perfect village, with his wife who's a consultant pathologist, and a son six days overdue. When he was about nine none of us really expected that he'd ever be able to live independently, let alone get to where he is today. He is a marvel! He is inspiration itself! He can be as infuriating as he ever was ;oP

On a completely different subject, I'm already thinking ahead to next academic year. I know that I still have three to four months till I finish this last course for my undergraduate degree, and that I'm only on the second module of my postgraduate certificate, but I need to be thinking about what's next. I know what I want to do next, and that's the MA in creative writing at Newcastle University. The other day I found out that if I do well enough in the PGCert then I will get automatic admission onto the MA! Hurrah! Of course, first of all I have to 'do well enough', and I'm yet to get my EMA back from my first module, so I've no idea if I'm on track for 'well enough'. Oh, and I have another EMA to do in a month or so for my current module (which I'm absolutely loving!). I'm doing the PGCert over two years so I have another module and a portfolio/dissertation to do for it next year, but each module is only six weeks long and that's not going to keep me adequately occupied over a year. I'm trying to find out if it'd be possible to top up my credits and do more towards the MA/start the MA in September, but I'm not sure how that would work or if it's possible. I'm waiting to hear back from them about this. The thing is, if I'm going to start the MA or top up postgrad credits then I'm going to have to look into funding. The MA is £4450. I've never had that much money in my bank account at any one time, let alone have a spare £4450 lying around to hand over to a university. I need to start looking at applying for grants from trusts and charities and educational councils - anything I can think of. I know there's a directory of grants etc so I'll check that out again when I can get to the library. I did so a while back and it looked like there may be a few places I could apply to, but from what I remember you have to have confirmation of a place on the specified course before you can submit an application. However, the problem with this is that when you accept a place on the course you're committing to the financial outlay, so you kind of need the money available before you accept the place. A difficult situation. Still, it's exciting to be thinking about the possibility of these things, and I'm sure that I'll work something out if it's meant to be. I suppose it comes back to 'It Couldn't be Done'. When the time comes I'll do it!

Books that saved your life

2011-02-12T01:14:00.001Z

Last night I went to a talk/interview thing with Jeanette Winterson at Newcastle University. It was fascinating stuff. She was largely talking about the memoir that she's writing and is due for publication in October, I think. Obviously as it hasn't been published yet then none of the audience had been able to read the memoir, but Jackie Kay who was interviewing had had the privilege of doing so, and Jeanette Winterson read out the first chapter to us. I hadn't known that she had been adopted, and this is largely what the memoir seems to be about, in a similar way to Jackie Kay's own memoir Red Dust Road. My younger brother, C, was adopted (originally born as my cousin), so it's a subject that interests me from the position of a sibling, and I think I'll be getting Jeanette Winterson's book when it comes out later in the year.

During the course of the interview JW spoke about the effect of some of her adoptive family's home-life and parenting, and the effect of learning more about her birth mother, and finally meeting her. She spoke also about working through the feeling of not belonging anywhere solidly in the world when you're an adopted person, which resonated in me with something that my brother once said to my mother. He was very young, perhaps six - I'm not sure - and he said, 'I don't want to be a dopted. I want to be a boy.' That says so much about identity, and a small child's perception of who they are and who they're seen to be.

So Jeanette Winterson was talking about this time in her life when she was working her way through all this, and she told how she got terribly depressed and had a breakdown. She spoke about how she lost all her words; not just her ability to write, which is terrible enough when you're an author, but more her all-round ability/inability to express herself. She told how awful that was for her, but then how it was poetry that helped her find her words again - not writing poetry, but reading it. As she said, poetry often isn't taken seriously as a form of literature and emotional expression, but rather as something soft and insincere, or conversely hard and academic. She then went on to say that reading poetry, and particular books of poetry saved her life; not the self-help books on depression and surviving nervous breakdowns, but books of poetry, other books - books saved her life. I found myself being distracted by this for a while during the talk, and through the rest of the night at home, and all through today, and I've been thinking about what books would I say have saved my life.

As I've spoken about a little in the past (and realise I've mentioned several times in recent posts for one reason or another), I had terrible, terrible depression for many years. It was debilitating. It had me in hospital on several occasions, usually for at least a few weeks, and once for eight months. In retrospect I would say that I was depressed to some extent from fairly early childhood, getting worse in my teenage years, and then reaching desperate levels in my twenties. I was actively suicidal. I self-harmed extensively. I started self-harming when I was in sixth form, but at that time it was very superficial, and it stayed superficial (though that doesn't make it insignificant) for a lot of years. As time progressed, the depression got worse, my lack of self-worth increased, and I lost the desire to live, the self-harming got worse. I'm not going to go into detail, but just to say that I was told on several occasions in A&E that it was the worst self-harm the doctor had seen, and I became very well acquainted with the internal anatomy of my arms. It was a terrible, terrible time, that I didn't believe would ever end without my killing myself. Thank God I was wrong, and thank God He got me through the suicidality so that I had the opportunity to find out that the terrible time could end another way.

In my late teens I read Richard Bach's book Jonathan Livingston Seagull. I know it's kind of seen as a 'hippy' book, but it I loved it. I still love it. There's a hope in it; a hope that being different and alone doesn't make you worthless and hopeless or any less worthy than anyone else. Jonathan Livingston Seagull is a kindred spirit to the outsider. It's a book that saved my life. When I was in the deepest depression I had no concentration to read, but my friend S read the book onto tape for me and I listened to it again and again and again. I still have the tape. I lost myself in the imagery it induced, and my time flying around the lonely skies above the seas, taking dives closer and closer to the surface of the water, gave me some calm. Jonathan Seagull was playing with death, I suppose, as he made those dives seawards, and I was playing with death with my ever-worsening self-harm ... although it wasn't a game ... it was the deepest unhappiness in the world and I was trying to escape...

After thinking about Jonathan Livingston Seagull, I wondered if there other books that had given me a spider's-breath of hope, or something else that had saved my life. Like JW I'm not talking about self-help guides, and I also mean something other than the Bible. There probably are other books that gave me something positive, or helped me see things in a different way, but nothing I can really, truly identify. No published books anyway. However, there was one other book (or series of other books) that was highly significant to me, I carried with me constantly when I was in hospital, and called upon often when at home. My diaries. My diaries probably saved my life too, and I have my diaries going back to about twenty years, although I hardly ever read them as they're full of that horrendous depression. But I want to share with you just a small part of two diary entries from 2003:

Monday 24th March 2003 - 10.32pm

I don't feel safe to myself. I don't know why but I am very urgy. At the moment I'd say that I'm maybe 90% certain to cut. Wish I knew why I'm so urgy. Maybe it's the habit of it. Maybe it's because inside I'm crying, but can't on the outside. Maybe it's something familiar ... a very weird kind of comfort. It shows me that I'm real, despite not feeling it. It shows me that I'm alive, despite not feeling it. When it hurts some of the internal hurt goes. While I'm doing it I'm calm and everything else goes for a while.

Thursday 27th March 2003 - 3.34am

I've been looking at my arms whilst moisturising them, and I've realised that my scars will only ever remind me of bad times. I've known that somewhere for a long time, but I've only just fully realised it. I want to be able to stop cutting. I don't always want to be reminded of all the bad times. I am going to try my hardest not to cut. I think it's three years that you have to be si free before you can have plastic surgery done on them so I figure that if I can do that then it'll be 2006. It'll almost be my 32nd birthday. I could aim for that ... I shall make that my aim. I will try to find a way, and ask other people for ideas of ways to stop. I shall need a lot of support and I don't know how I'm going to achieve it, but I want to try. I want to be able to free myself from the past - from all the pain - and I don't think I'll ever be truly able to do that while I bear constant reminders of how terrible things have been (and are at the moment).

I will see if it's possible to buy Tubifast so that I can write on my arms without immediately having to wash it off so others don't see it. I will write 'NO' in big, black letters. I will write '32/2006' or something similar.

Seems weird talking about becoming 32 and the year 2006 because they're in a time-scale that doesn't yet exist for me. I can hardly comprehend Monday [...] let alone 3 years time ... I'll still try to aim for it though.

Need to find other coping strategies quickly!

I have only self-harmed once since making that diary entry, and that was on 22nd April that year - 2003. It was one of the toughest things I ever did - giving up si (self injury) - but I did it, and it's been several years now since I've had kind of urge to si. I never did go for plastic surgery and I'll always have the scars, but they're a part of me. I don't like them, but I don't hate them - they're just the way my arms are, and I long ago decided that if other people don't like what they see then they don't have to look. I, on the other hand, have to live with them everyday so if I hide them away and refuse to accept them, then I'm hiding myself away and refusing to accept a part of me. I won't do that. Harbouring that attitude will harbour an underlying self-hatred that has potential to develop into depression again, and I'm not doing that if I can help it. Life is for living, and I'm going to live it! My diary taught me that. My diary saved my life.

Are there any books that have saved your life?

It couldn't be done

2011-02-09T22:23:00.000Z

Last week was a bad week with POTS - lots of dizziness, unsteadiness, and passing out; racing heart; exhaustion; poor concentration; tinnitus; and host of other things, but these were the main ones last week. As a result of the POTS-iness I was finding study practically impossible, and although I had an extension for my End of Module Assessment (EMA) for my postgraduate certificate course in Writing for Young Adults, my new deadline was to be this coming Friday - 11th February. I couldn't see that I was going to be able to meet the deadline and thought I was probably going to have to ask for a further extension. I was reluctant to do this, though, as I still have a lot of OU study to catch up on (I'm an essay behind with them again, as of last Friday), and I can't start on that until I've done the PGCert submission. I was beginning to feel like I was chasing after myself.

Sunday came and although I wasn't great, I did find that I had more concentration than I'd had all week so I decided to make the most of it. I sat down and set to it, trying to write the first three chapters of my novel for young adults, of which I only had about 500 words. It took a long time to focus, to find direction, for my character to start to speak to me again and tell me what she was up to, what she was thinking, what she wanted, what she was feeling, and what was going on around her, but gradually she revealed herself, and bit by bit I was able to put her down onto paper. By the end of Sunday I had most of my three chapters! Monday was spent editing and then thinking about what I was going to write in the reflective commentary. This is basically where we discuss the process of writing and editing our work; how we have incorporated what we've learnt through the course into the work that we've produced and are submitting for the EMA; what feedback we've had from peers/others, and how we've responded to that feedback; and give any information that's vital for the understanding of the extract of the book we're presenting for submission. All in 1000 words. Not an easy task so it does take some contemplation. Although there were other things I wanted to do yesterday I made myself get down to work, and by the end of the day I had a little over 1000 words of commentary! To be honest I didn't spend much time editing the commentary, and perhaps it could be more concise in places, but I'm fairly happy with it, and I'm sure it's more than enough to get a pretty good pass. I went into town today, went to the university, submitted my EMA! I have surprised myself! I've also surprised several others who, like me, weren't convinced that I'd be able to meet Friday's deadline, let alone submit my piece early. Now that I've written the first three chapters I want to write the rest, but it's going to have to wait, because now I have all that OU work to catch up on, and last Thursday I started my second PGCert module - Memoir Writing. Maybe one day I'll be able to say that I'm on track and running to schedule, but my decrepitude keeps interfering with that, and it seems that whenever I'm on the cusp of achieving this goal I end up in hospital or almost in hospital or full of POTS-iness. Most frustrating. However, I've got this far so I'll press on.

There's an elderly woman from church, A, who comes to see me every few weeks. She's part of the pastoral care team and has been visiting me for a couple of years now. In name it's for my benefit; in practice it serves us both. We're quite different, not least in age as she's 81 (although extremely fit and sprightly), but A's lovely and we get on well. We chat, sometimes we have tea/coffee, we tell each other what we've been doing with ourselves, what we plan on doing, and how we feel. Basically it's friendship, and it's lovely. I was telling her today a little about my studies, how last week had been POTSy so I hadn't got anywhere with my studies, but that I'd worked my socks off since Sunday and had got my Newcastle University project done. She was not only pleased for me, but said that she didn't know how I did it. To be honest, I'm not sure how I do it ... except that it's self-belief that I can do it and the knowledge that I want to do it. I want finally to achieve my academic potential, and when I'm behind at the moment I remind myself that my OU course will be finishing in about three months time, and on 16th September I'll be graduating. Me! Me! The person who under-achieved all through school; the person who got ill with depression when at university studying nursing when she was 19/20; the person who became immobilised by depression for many years and didn't achieve anything much (or didn't feel like she did). Me, I am going to graduate! ...I just need to get to the end of this current Open University course, and the end is in sight. And the plan after that? To continue with post graduate studies at Newcastle - finish the PGCert in creative writing and go onto either an MA or MLitt. I never used to believe I could achieve anything like this, like that. These days I do. My teachers weren't ever very encouraging, and I never got the impression that they believed I'd achieve anything much, although none of them ever said this explicitly. My father didn't believe in my academic potential. So many, including myself, didn't think that it could be done. Here I am doing it.

I have a book of poetry called The Swallow, The Owl, & The Sandpiper. It's a fantastic poetry book, and is published by Finks Publishing in aid of The Sandpiper Trust. The following is taken from their website: 'The Sandpiper Trust aims to provide Scotland’s doctors and nurses, who have been highly trained in accident and emergency skills by BASICS ( The British Association of Immediate Care, Scotland), with appropriate emergency medical equipment known as the Sandpiper Bag.' That's a very small snippet of what they do, but it's a great cause and a fantastic book, which you can buy directly from their website. On page 56 of the book is a wonderful poem that my mum read out to me on the phone one day when I was in hospital and I'd come through another life-threatening asthma attack (Mum originally bought me the book as well as a copy for herself). The poem is 'It couldn't be done', by Edgar Guest:

It couldn't be done

Somebody said that it couldn't be done,
But, he with a chuckle replied
That, 'maybe it couldn't' but he would be one
Who wouldn't say no till he'd tried.

So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn't be done, as he did it.

Somebody scoffed: 'Oh, you'll never do that;
At least no one we know has done it';
But he took off his coat and he took off his hat,
And the first thing we knew he'd begun it.

With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn't be done, as he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you, one by one,
The dangers that wait to assail you.

But just buckle right in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That cannot be done, and you'll do it.

- Edgar Guest

(1881-1959)

Master Chef meets Krypton Factor

2011-02-04T23:18:00.002Z

You may know that I have a lot of allergies, most of which are anaphylactic, and many of which are to foods. The main things I'm allergic to are preservatives and colourings, and you'd be surprised at what you'd find these in, even in so-called healthy foods. One of the consequences of these allergies is that I can't eat any ready meals so I have to have all my food cooked from scratched. Yes, real cooking! I quite enjoy cooking, but I'm very limited these days in how much I can do because of my tendency to pass out when standing due to the POTS and vasovagal syncope. It's not very safe to faint whilst standing over a lit gas hob so these days I have carers come to cook for me three evenings a week. It can be a bit tying sometimes if I have things to do, or I want to be out, or if they turn up early, and I've never been the best at planning meals ahead so sometimes I get a little frustrated at having to be organised with this kind of thing. It's made a little trickier by the fact that they come at 4.30pm, which is far too early to have dinner so I need to think of things that I can either re-heat quickly later on or that take a long time to cook. Last year W bought me a slow cooker and that's been a god-send with these carers as they can do all the cooking bits then set the slow cooker away to do its stuff so that a few hours later I can have tea at a much more sensible time. Marvellous. All I need do is provide the recipe and ingredients...

It would, however, seem that cooking is an alien concept to many of the carers who come to me and the tasks I lay before them are akin to those on the Krypton Factor. Now it's not like I ask for anything particularly complicated - in fact that's another challenge for me as I have to try to find simple recipes - except that the mere thought of cooking anything other than a ready meal or heating up a takeaway appears to be very complicated. I have several different carers come to cook for me and I only really have confidence in one of them. They're all lovely people, yes, but you wouldn't find them on Master Chef. I had one who, on her first visit here, told me that her father is a chef so I optimistically thought that he may have passed on some of his culinary skills to her. Nope. She had to ask me how to cut the leek I'd put out with the ingredients for my dinner. On one of the days the following week a very sweet young carer (maybe in her late teens or very early twenties) came. She pointed at the pile of ingredients on the bench, made her face Dali-esque and squawked, 'What's that?!' It was a sweet potato. The day she came and I had a raw beetroot I'd been given on the bench I thought she was going to run away in fear so I had to reassure her very quickly that it wasn't part of that night's dinner; it was just on the bench as a place to put it. I then had to explain that it was a fresh beetroot, and no, not all beetroot comes pickled in jars. Bless her ... and God help me!

I guess I don't mind so much if the person who comes is honest about their cooking ability. I can allow for inexperience. I can prepare myself for perhaps not the tastiest meal I've ever had. So long as they make sure all the veg etc is suitably washed so that they don't accidentally kill me then I can pretty much let them off. It's when they're 'misleading' about their culinary skills that it gets me. I had one woman come - another friendly character - who, when I explained about my allergies and therefore the need to do 'from scratch' cooking, assured me that she was a good cook. She told me that she'd been married to a Morrocan man for seven years so had cooked all his meals from the raw ingredients and was quite experienced. After tasting the soup she made me I wonder if she's still married to the Moroccan man or if in fact he's dead. I set her the challenge of making me butternut squash and carrot soup with a little ginger and chilli. As always I'd set out the ingredients on the bench. As always I presumed she'd follow the recipe in terms of quantities, and I even provided scales for weighing out any ingredients she needed to weigh. I went off to have my bath (the heat of a bath or shower makes passing out more likely so I have a bath while the carer's around in case there are any problems) and left her to make the soup. When I returned to the kitchen I discovered that she hadn't actually fried the onions, garlic, ginger, chili, or any of the veg before adding the stock (homemade stock as I can't have the bought stuff); she'd simply chopped it all up, put it in the enormous pan, and filled said pan with all of the stock I had. And it was only after she'd left that I realised she had no discernment at all regarding quantities. She had used a whole green chili, a whole root of ginger, and a whole bulb of garlic! I let the thing, the concoction, the pot of poison bubble away in the hope that maybe it wouldn't be so bad really, but after I'd blitzed it in the liquidiser and tasted the tiniest of tiny amounts there was no fooling myself into thinking that this was edible. It had somehow transformed itself from appetising and tasty fresh vegetables to some kind of anti-food. I think I had boiled egg that night instead. The next time she turned up I lied that I was going to my dad's for dinner that night, but I still needed her there while I had a bath. I don't remember what I ended up doing for tea in the end, but I couldn't face sampling her cooking again, that was for sure. On the bright side, as she wasn't cooking for me that evening she offered to do other stuff so she did my ironing. The carer who comes on a Wednesday morning is supposed to do my ironing as well as the cleaning, but the one I've had most since my regular Wednesday carer left the agency is rubbish at ironing, doesn't like doing it, complains all the time she is doing it, and doesn't do very much of it. Needless to say, there was rather a lot of ironing to do. It all got done and I also didn't have to suffer her cooking. Bonus!

I had yet another carer come tonight. I have to say that she was ever such a lovely person, and she did in the end manage to follow the recipe and produce a very nice dinner in the slow cooker for me. However, I also have to say that it is quite miraculous that she managed to follow the recipe and produce a very nice dinner in the slow cooker for me. When I told her that she'd be cooking from scratch she looked terrified, aghast, distraught. She came clean that she doesn't cook. I told her not to worry as I'd put all the ingredients out along with the recipe, and assured her that a slow cooker is really easy to use. She'd never seen a slow cooker before. She doesn't even use a conventional cooker. She lives off sandwiches. This was going to be a challenge ... for us both. Right then, time for some education. I introduced her to the concepts of fresh vegetables, cartons of butter beans, and uncooked wholegrain rice. I gave her her first sighting of saffron, and explained that she should use only a very tiny amount as it's so blooming expensive. That scared her. I got her a pan and showed her how to light the hob. I showed her the recipe book. I thought she was going to collapse with repressed hysteria. 'Oh,' she squeaked through tightened vocal chords, 'I've never used a recipe before. I'm not sure that I can. I mean, I'll try, but I'm scared. I've never done it before. It looks so complicated.' We read through the recipe together, and I explained that yes, she would have to use the hob a little bit to brown the leeks ... and I explained what 'browning the leeks' meant, and I reassured her that she'd be fine, and I went off to hide in the bath. After a while I could hear a lot of clattering and I could smell burning, but I figured that being in the bath surrounded by water was perhaps the safest place to be if the carer was going to accidentally set fire to the flat, so I stayed put and hoped I'd still have a kitchen by the time I plucked up the courage to get out of the bath and back to the carer. Thankfully I do still have a kitchen, and despite the burning smell I see no evidence of there having been any flames. When I reappeared though she did say that she hadn't washed the butter beans, and asked how she was meant to do that so I said to use either the sieve or the colander. She looked at me blankly. I showed her what a sieve looks like.

Coming together

2011-02-02T23:55:00.000Z

I'm getting sorted. I've slightly decluttered the flat, not by actually getting rid of anything (God forbid! ;oP ), but by buying some more book shelves. I've had books piling up on tables, my desk, on top of other books on shelves, and doubling up on each other too. It's been annoying me for a while, and I thought I'd run out of space for new bookshelves, but I solved the problem by replacing some that I had with longer ones and giving the old ones to W. A rather wonderful friend and his oldest son came round to put the new shelves together for me, and after some sorting and re-organising I now have some spare shelf space on all my bookshelves even though all my books now have homes! Hurrah! I find that getting my physical surroundings straightened out often helps to get my head a little less cluttered too, so it's a good thing all round :oD

As you know, I was feeling a bit vulnerable and overwhelmed by the whole swine 'flu thing. Way back at the end of October/beginning of November I wrote to one of my GPs after a series of infections and admissions. I was worn out - physically, emotionally, spiritually - much as I have been recently. I wasn't asking for anything from the doc; I just needed to off-load. When I was writing it I wasn't sure if I was actually going to send the letter. I wanted to, but it was very much an emotional out-pouring, that didn't necessarily make sense in places to anyone but me ... or even me, but in the end I did send it and I'm glad that I did. I hadn't necessarily expected a reply, but when I was at the surgery picking up a prescription shortly before Christmas, the GP I'd written to popped into the reception area so I asked if she'd got my letter. She said, with a friendly smile, that she had and to make an appointment to see her sometime to talk through some of it. After having to cancel the first one I made because of being in hospital in Edinburgh, I eventually got to see Dr P last week. I knew that she wouldn't be able to do anything - to change my situation - and I wasn't expecting her to, and as I said before (and in my letter to her) I wasn't asking for anything in particular, but all the same the appointment was really helpful. I dunno, it helped by just talking through some of the mess in my head from the relentlessness of chronic illness and repeated life-threatening illness, with an opportunity to cry about it without being presented with 'there's always something in the pipeline' syndrome that negates my anxieties and upset, and really only serves to placate the person who's saying it, and they're only saying it because they can't cope with any thought of the reality of death. *Ramble over and takes a deep breath* So yes, it was helpful. Dr P listenend, and understood, and offered some advice, and talked, and was fairly aghast that the health psychologist hadn't been able/willing to offer me anything, and she gave me loads of time. Appointments are supposed to be ten minutes, but she must have given me maybe forty-five minutes. Okay, so this won't have pleased others waiting to see her, but it was the time I needed and she was happy to give it to me. She, like most of the doctors in the practice, has known me for a lot of years now and has seen me through a heck of a lot - including very severe depression through my twenties - so she knows me well. We talked a little about how things used to be and how things have changed on many different levels, and I was of course right that she can't change my situation now, but just having that time to verbally vomit was invaluable, and I came away feeling a lot more together. Dr P assured me that it had been more than okay to have written to her, and even said that I was very welcome to write again, anytime that I wanted to, or if I preferred then I could make a double appointment to see her again, whenever. She was lovely. She just gave me the time and the space that I needed, and the opportunity to cry and splurge and say, 'Sometimes it's crap and it's overwhelming and exhausting,' and even though she may not have the experience of it herself she appeared to truly understand. I feel somewhat emotionally refreshed by the appointment, and will definitely go and see her or write to her again if I feel I need to.

And then car-related things began to come together. They're a bit long and complicated to go into the nitty gritty of, but the upshot has been that despite work needing to be done on my old car after its bump, I got my new car on Monday. I love it! I'll get a photo of it sorted out at some point and put it up here, but that might not be for a day or two. In the meantime, here's a link to the website for the type of car I've got - Vauxhall New Meriva. I do like my new car very much, and it's such a relief to have all the worry about whether or not the crunch in Crotchet (the old car) would mess up timing of getting MacTavish (the new car), and all the hassle with insurance etc. No, that's all in hand, all been paid for, and all sorted out :o) The stress is gone and I can get on with enjoying MacTavish, and trying to learn my way around all the controls and buttons and different lights, which reminds me that I must get the instruction books out and have a look at them to familiarise myself with some of it.

The next thing is study. As you can probably imagine, I'm a long way behind with my studies again after my recent adventure with the flying pigs (swine 'flu). I had an assignment due in for my OU studies on 7th January, and the End of Module Assessment for my last postgrad module at Newcastle University was due in on 10th January. Obviously I missed both deadlines. My tutors have both been great, with my OU tutor telling me not to worry at all about any assignment deadlines apart from the last one and the ECA that are notoriously difficult to get extensions for from the OU; and my tutor at Newcastle just asking me to let her know when I was home so we could go from there. I contacted them last week and I have a new deadline of 11th February, which is only Friday next week, but I got the impression that it may be a fairly flexible deadline. I kind of hope so, because although I would have liked to have got a lot done during this past week I've felt rather brain-dead, and for the first little while I was concentrating on that OU assignment that had been due on 7th January. I re-read the course material related to that and continued on with the few notes I'd made for the essay when O and I were away, then I set to and got the thing written. As ever, one of the most challenging things was getting in all the info that was being ask for into the stupidly low word count. I did it as best as I could in the circumstances, sent the essay off, and a few days later had the marked one back - 82% Not bad. Not a First (with the OU a First starts at 85%), but I'm pleased with it :oD I'd been going to get down to my postgrad EMA for my last module (Writing for Young Adults) today, but I haven't been feeling too well - absolutely exhausted, thumping headache all day, sleepy tired as well as physically tired. I've glanced in the general direction of study instead, and I'll let it tick through my mind overnight so that maybe I can get a bit done tomorrow morning. Having said that, tomorrow is rather busy with pulmonary rehab in the afternoon, followed by a quick return home for a bath and change of clothes before heading out to the first class of my second postgrad modules (Memoir Writing). I'll just have to hope that I'm feeling okay at the weekend and work hard throughout.

All in all, things are coming together, I'm feeling more together (despite being a little off-colour for some reason), the new shelves have been put together, my physical surrounds feel a little more organised, all the car stuff is sorted, and I'm all together rather pleased with my new car. Things ain't bad :oD

Gallery

2011-01-28T23:03:00.016Z

I'm home. I've actually been home for a week, but I've been doing a certain amount of catching up on sleep, oh, and a little bit of study too, but rest and sleep have been my priorities. I've had a little more energy today than I have the rest of the week, so perhaps I'm picking up now.

Despite being tired, and having rather a lot to be tired from, I did enjoy (most) of my time away in Lancashire, and I thought I'd share some of my photos from it with you. The most random photo of the holiday has to be this first one:

Having looked this up online I see that it's probably a story about a controversial art exhibition at the Harris Museum, but still the mind boggles. O and I actually went to the Harris Museum, but rather than seeing any giant moles we saw a rather good exhibition by Shirley Craven and the Hull Traders, which I'd certainly recommend if you happen to be in Preston.

I haven't been to Preston before, and I have to say that I was pleasantly surprised by it. I'm not sure what I was expecting ... perhaps a rather industrial town, but no, the centre of it at least was full of old architecture, and all the people we met were very friendly (particularly those in the Harris Museum, who seemed so encouraged by our enjoyment of the place that they insisted on imparting all their knowledge). Of course, Preston also gets brownie points from me for getting my car through its MOT despite the bump in the back and the missing rear windscreen wiper. So anyway, here's a pic of a row of old telephone boxes O and I came across in Preston and were looking particularly photogenic.

I wrote in my last post about the mini saga of getting from the centre of Preston to the garage where we'd left the car. I told how we hadn't known the bus route and had ended up getting off at a stop rather a long way from where we'd wanted to be. Well one of the benefits (or possibly the only benefit) of this diversion was that we had the opportunity to stop on our walk to the garage to take a photo of the rather wonderful sunset. At least I think it was a sunset, rather than the moon. Everything was foggy. Everything was frosty. The sky was white. The sun/moon was also white. I haven't changed the colours or converted the photo below into black and white, but this is the scene:

Do you think it's the sun or the moon? I think it's the sun (it was only about 2.30pm) seen through the fog, but it could be either.

When it wasn't foggy we had a couple of evenings with wonderful sunsets. We had brilliant views of these from the cottage as it was some way up a hillside. Here are a couple of the lovely sunsets we saw:

The opposite end of the day was the most active time at the bird table in the garden directly outside the kitchen/living room. Unfortunately I didn't manage to get a photo of any of the chickens pecking away at the food on top of the bird table - something I hadn't seen before so I found it quite amusing - but here's a photo of one of the cockerals that came to snaffle some of the scraps on the ground:

And the reason for most of the scraps on the ground - other than the chickens and occasional grouse that would also come and scrounge the food on the top of the bird table - were the little birds. Mainly these were bluetits, but there were also great tits, nuthatches, chaffinches, robbins, sparrows, and various other little birds. Here are just a couple of photos of some of these to finish off my little holiday gallery:

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I'm not sure what's happened with the formatting of the sunset photos. There doesn't seem to be a lot I can do about it unless I delete and re-upload, and quite honestly I can't be bothered ;oP I'm sure you'll cope :o)

Splosh and crunch

2011-01-20T21:29:00.000Z

I got out of hospital on Friday as I thought I might :oD It's been great to be free! I went back to Mum's for a few days and had some wonderful TLC, and then despite Mum's (understandable) worry about my coming away so soon after being so poorly, I made it to Lancashire on Monday with O for some of our curtailed holiday.

When I left the hospital on Friday I was still very much inflated with copious amounts of fluid retention, which was making me terribly tender and miserable. It does appear to be shifting now, thanks to the furosemide, although I'm still sploshing about in my own body somewhat, but nowhere near as much as I was. It's such a relief to have got rid of some of the water :o)

So O and I set off from Edinburgh on Monday afternoon and had a very lovely drive through the countryside along the A702 and A74, in bright sunshine and with pretty views. Just as I was feeling that I could do with some lunch and a rest we happened upon the Annandale Road Chef, which, being a motorway service station, you wouldn't expect to be anything special, but it was extremely lovely! How often do you hear that said about motorway service stations?! As we drove in there was a small gaggle of white geese on the grass verge, peering in our direction and looking rather welcoming, and then as we sat in the coffee shop inside we had a lovely view over a lake with ducks washing and preening themselves, and dipping in the water, and swimming about. We didn't make use of it as it was a bit chilly, but there was a patio area next to the lake that looked as though it would've been a nice place to sit out in the summer. It really didn't feel at all like a service station, and was most relaxing and refreshing :o) When we went back out to the car we were greeting by one of the geese and several ducks. They were extremely tame and followed us right up to the car. In fact, at one point I thought that perhaps they were going to jump into the car to munch on any crumbs they could find on the floor (which would've been quite a lot as it needed a good clean out). We sat for a while with the door open as the ducks and goose came up to say hello, and nibbled my fingers. I've been nibbled by ducks before, but I think that was possibly the first time I've been nibbled by a goose. It's not unpleasant ... not something I'll take up as a hobby, but it didn't hurt. After the goose had had a little munch on me and it was seen off by drake that wanted his turn, I was about to close the car door when I noticed a tiny chaffinch sitting on the wing mirror, which promptly hopped onto the door frame and sat watching us. As it leapt up there a wagtail popped itself on the wing mirror and it too watched us, although a little less intently. The chaffinch was so tame it almost let me touch it. I didn't want to frighten it off so I stretched my hand out ever so slowly, and I must have got within 10 cm of touching it before it got a little too nervous, but it didn't fly away; merely hopped sideways along the door frame. It was beautiful and so delicate. I could see every tiny little, rusty-coloured feather, and the slight up-turn of its beak at the very end; it's beady, little, black eyes keeping an inquisitive eye on me, but generally unafraid. I think it only flew off because it realised that we didn't actually have any food to give it, but I did enjoy it while it was there :o)

So we drove on and the A74 turned into the M6 when we hit England, but the far north end of the M6 isn't too bad and the traffic wasn't horrendous so the drive was okay. O and I had half arranged to meet a friend who lives in Cumbria at the Tebay services just past Penrith. As it happened this friend was too busy to meet up (very sad, but maybe we'll see her tomorrow), but we decided to stop for a cuppa anyway as we'd been told that these services were also particularly nice. They are. There's a farm shop; a lovely cafe with huge windows that look out onto a view of a pond with ducks, beyond which is an expansive field that gives way to rolling hills of green and purple. Although the sun was beginning to set by now the day had been bright and cheery and I could feel myself begin to relax into holiday mode as I sat there drinking a decaf latte and breathing in the life of the countryside. We had a little mooch around the farm shop before heading off for the last 45 minutes of our journey to Barnacre Cottages where we're staying in The Piggeries (how ironic given my recent illness with swine flu ;oP ). Although Barnacre Cottages are only a short way off the M6 the road between them is so small, twisty, and turny that it must take about 15 minutes to drive up here, but it's worth it because it's lovely.

So we arrived, and I pulled in to the little parking alcove for The Piggeries, and I reversed to straighten the car up, and I crunched the car into the wall behind, and the back windscreen smashed into smithereens, and the boot panel was dented in a big way, and the windscreen wiper was ripped from the car. I wasn't best pleased with myself. After a little frustrated cursing at myself I got myself into organising mode and began with phoning Motability, through which I lease my car. They were terribly helpful and sorted out an appointment for us with Autoglass to get the windscreen fixed that night. Unfortunately the only time Autoglass could fit us in on Monday night was 'sometime between 11pm and 1am.' No problem, they were going to come out to us to fix it ... except then it turned out that they couldn't do that because it was too damp in the open air for a new window to stick with the heat-fixing system (or whatever. It was all very technical and I'm not up on fixing car windows, funnily enough). So it turned out that we'd have to go to them, and they were in Bolton, which turns out to be almost an hour's drive away from Garstang (the nearest town to where we are). We had a call from them around 10pm to say we could start making our way over, so we piled into the draughty car - now with a perfectly clear view through the back on account of there being no window - and drove back along the twisty, turny, and now very dark road from the cottages, and then on to Bolton. It's slightly disconcerting driving along a dual carriageway/motorway with no back windscreen, and the strange sucky sounds that whistle through the car when another vehicle overtakes. Thanks to sat nav we got to Bolton and found the Autoglass place without a problem, and were promptly greeted by a friendly guy who sat us in a warm office with a TV, remote control, and free coffee machine, while he got on with replacing the back windscreen. It wasn't how I'd planned my first evening of the holiday, and I'm sure it hadn't been in O's plan either, but given that it ended up being in the plan it was okay. And then I noticed a sign that said that after you'd had your windscreen replaced then you couldn't drive at high speed. What constitutes 'high speed'? I asked the friendly guy, explaining that not being able to drive at 'high speed' could be a problem as we had to go on the motorway to get back to where we were staying.
'Where are you staying?'
'Not far from Garstang.'
'Garstang?!' He sounded incredulous, and aghast that anyone would stay anywhere near Garstang.
He sucked in air through his teeth and tutted. 'Well, hmm ... I can let you drive up to 60 miles an hour, but definitely no faster than that.'
You know, it's actually really rather scary driving 60 mph and less on the motorway, even at 1am when there isn't a great deal of traffic on the road. Mind you, the scariness wasn't helped by an ever-thickening fog that began to engulf us as we drove back. In fact, once we were off the main road and back on the dark, narrow, twisty, turny road heading towards the cottages the fog was so thick that had it not been for the sat nav showing the existence of a road ahead I would've doubted there was one. It was a very gothic drive through the tree-lined, fog-laden country roads, and a terribly, terribly scary one given that I couldn't actually see the road more than a foot or two ahead of me. Funnily enough, driving at high speed wasn't a problem at this stage, with our maximum speed being something in the region of 15-20 mph, but we did eventually make it back, and I didn't immediately reverse into the wall and crunch the car again.

As you may imagine, Tuesday was a day of doing very little, although I thought some sustenance was required so I made flapjack, which my grandmother always called crunch, so it seemed particularly apt. I like crunch, and I like making crunch because it's so quick and easy yet scrummy. O also seems to like crunch :oD In fact I 'had' to make more crunch last night to make sure that we've had enough for today and tomorrow (and although O doesn't know this yet, I'll give her some of it to go home with too).

I'm afraid the saga of the car continues. It's all been terribly complicated. As I mentioned before, I lease my car through Motability, one of the benefits of which is that I get a new car every three years. On Sunday it'll be three years since I got my current car and you may remember my blogging back in November about getting a new one. Now then, a new car doesn't need an MOT, but once a car gets to three years old it needs its first. I was supposed to get my car's MOT done before Christmas, but on the day that it was booked in the car was snowed in so I had to cancel and re-book. I re-booked for a couple of weeks ago, but then of course I ended up in hospital in Edinburgh so once again I had to cancel the MOT. Time has been pressing on though, the MOT needs to be done, the lease on the car expires on Sunday unless it and the insurance is temporarily extended by the garage from which I'm getting the new car. I booked another MOT for this Saturday, except then I was told by Motability that if it were done at the weekend then the paperwork wouldn't go through in time for the lease/insurance to be extended, so they then decided that I'd have to get the MOT done while I was away in Lancashire. They booked the car in to a garage in Preston for today. Fine, except that the guy from Autoglass wasn't sure that the car would pass the MOT after its crunch on the wall because of the big 'dent' and the ripped off windscreen wiper (the car can't fail on a feature it doesn't have, but apparently if it does/should have a feature that doesn't work then it can fail). It has to be said that this has been causing me a considerable amount of stress, as it suddenly occurred to me that if the car failed the MOT then not only would it bugger up getting my new car, but O and I would be stuck in Preston as we wouldn't even be able to drive it back to the cottage until any work that needed doing was done, and who knows how long that might take. Now I know that God has a load of very important stuff to work on around the world, but this hasn't stopped me from praying hard about this situation over the past few days, and during most of this morning's drive to Preston I was praying the fairly basic prayer of 'Father God, pleeeeeeeeeeeeeeease, pleeeeeeeeeeeeeeease, pleeeeeeeeeeeeeeeeeeeeeease get Tommy Crotchet through his MOT. Pleeeeeeeease. Amen.' It's just as well that prayers don't have to have to fancy language, because as you see, this one really didn't have it. However, God is good, and a little after 2pm I received a call from the garage telling me that the car was ready to be picked up and everything was okay. Hurrah!

Having ventured into the centre of Preston on the bus we had to find our way back to the garage on the bus, but unhelpfully it turns out that you can't just go to the bus stop on the opposite side of the road to where you got off the bus in order to go back to where you came. Not in Preston. No. You have to go to the other side of town ... and get a different bus. We went to the tourist information centre for help, where the woman helping us went to ask a woman for help on our query, which didn't instill confidence in us. She returned with the information of which bus to get, but seemed a little unclear as to where the bus stop might be so advised us to go to the bus station, but only a short way up the road we say a stop for the bus we wanted, and sure enough within minutes there it was. We clambered on, I got out the map and followed the route, we got so close to the garage and I was feeling chuffed with myself for my clever thinking of following the map when the bus turned off into a housing estate and, upon leaving the housing estate, turned away from where we needed to go. I rang the bell for the next stop, but the next stop was ages away so we ended up having to walk quite a distance back to the garage. We eventually made it, we picked up the car, we set off on our way back to Barnacre Cottages, and the thick fog rolled right back in. The North West does a good line in fog. If you want to come somewhere and not see where you are then I recommend Lancashire in January ;oP Another gothic drive back through the twisty, turny, country lanes and we arrived back at The Piggeries, where I didn't crunch the car, but did collapse in an exhausted heap in the comfy seat with a cup of tea and piece of crunch as the stress of the day and the saga of the car melted from me. I have phoned the various people I had to phone; the lease can now be extended; the car is booked in for inspection of the repairs that need doing, and the garage doing this are going to come to my house for this; the guy at the garage from where I'm getting the new car was ever so nice and told me not to worry, that it'd all be sorted, I just need to keep them informed as to what's happening.

Now then, will somebody please remind me how one is supposed to holiday? I'm sure they're not meant to involve things like swine flu, near-death, hospital admission, crunching cars on walls, MOTs, and exhaustion. I'm going wrong somewhere, aren't I? Maybe I'll get a rest when I go home tomorrow ;oP

Onwards and upwards ... or rather, downwards

2011-01-13T23:29:00.000Z

Over the last few days we've been doing the aminophylline weaning. It can take a while to get me off the drip and back onto oral theophylline, but today we eventually managed it, and now all is looking hopeful for discharge tomorrow :oD I usually have a couple of days on the ward between the infusion coming down and me going home, but I'm not going home alone this time, as I normally would. I'll be going back to Mum's for a couple of days of TLC, and then going to Lancashire with O for our slightly curtailed holiday. My mum is understandably worried about me going away, and doesn't really want me to go at all, but I need the break after the events of the past 2 1/2 - 3 weeks, and it's not as though O and I are going to be getting up to a huge amount of activity. The plan had always been to spend lots of time together writing, whilst doing some other nice things around that and maybe meeting up with one or two folk we know over that way. The most tiring bit is going to be the drive there, which RAC Route Planner estimates around three and a half hours, but that's without stops, which we'll definitely be having. Once we're there though, we can relax and have several days there before driving back to Newcastle on Friday. I know that I'll have to pace myself carefully, and that I'll be more tired than I would otherwise have been, but I'm sure O will understand that.

So the aminophylline is down, and I'll be going down 'south' (whilst it's still very much up north). The next thing to get down is the water retention, which is still very bad, all around my hips and middle, tender, and making me more enormous than usual, which I hate. Having the infusion down should help, partly because I don't have the extra fluids going in, partly because the aminophylline was in saline and the salt will have been contributing to the retention, and partly because I can now get more mobile than I was. Then there's the steroids to start getting down if possible. These days my maintenance dose is a whopping 85mg, but while I've been in here it's been put up to 120mg! The trouble is that my lungs notice the slightest drop in prednisolone so I have to reduce it ever so slowly, but again, when I do manage to get it down a bit then it should help reduce some of the water retention as well. I can't wait for that.

You know, for all that I'm 120 miles from home I've done remarkably well for visitors. Obviously Mum and J have been in to see me (and bring me my meals as the hospital doesn't have it own kitchens so can't cater around my multiple allergies), but I've also had lots of others visit too. O, who I'm going on holiday with on Monday, lives in Edinburgh so she's been in several times, as has F. I met both O and F through the Open University, more specifically through the OU Students Association (OUSA) fora, and have built up great friendships with them both and met up with them on many occasions now - sometimes up here in Edinburgh; sometimes they've come down to Newcastle. There's another OU friend, K, who I did the Children's Literature course with, and who also lives in Edinburgh. She came down to Newcastle one day last summer for an afternoon get together with a few other CLit folk, and she came to visit me in hospital during this admission. Then I had a friend from Newcastle visit me. N now lives in Aberdeen and was on her way back there after Christmas, but decided to stop off at RIE to see me :o) And today Wheezy Tux came to visit. Wheezy Tux and I initially met on the Asthma UK discussion boards, and then became Facebook friends. Today is the first time that we've met face-to-face, and it was great finally to meet up as we've missed each other one way or another each time I've been up to Edinburgh before now. It was lovely. Wheezy Tux is lovely. Friends are lovely and I feel very blessed to have so many people who care about me, and very lucky that I can be so far from home yet have friends come to visit. I also have an abundance of get well cards. Some are from folk from Newcastle, but most are from people I've met through the Open University, and today I got a lovely one from a whole group of people I did the Children's Literature course with, only three of whom (and the dog of one of them) I've met in person. Of course, my other friends from Newcastle have been keeping in touch, some through Facebook; some through text, so I really haven't felt alone while I've been all this distance from home. I am ever so lucky to have such wonderful people in my life. Thank you all.

Consultants

2011-01-10T21:32:00.000Z

I've seen many different consultants during my time here at RIE, and although I've been told the name of the one I'm supposedly officially under I'm yet to identify him. I think he came to see me while I was in critical care, but as I say, I've seen so many that I'm really not sure any more. There was one consultant of note who came to see me in HDU - a respiratory consultant from this ward. He asked me who my consultant is at home, so I told him Dr H.
'Ah. I know him from our Leeds days.'
I nodded.
'He's got a good pair of legs.'
!!! What can one say? I mean, I don't go looking at my consultant's legs (though maybe I ought to).
'He's, um, very svelte, yes...' I trailed off.
'In defence! I mean he's got a good pair of legs in defence!'
!!!
'I mean he's very good at football!'
Ahhhhhh
Notable consultant (also going by the name Dr H, but it's a different H) scurried off looking rather embarrassed. I was left giggling at the predicament he'd put himself in, and the thought of my Dr H having 'a good pair of legs'.

I saw this RIE Dr H on my way into the ward. He saw me. He looked quite embarrassed all over again and busied himself with the hand gel at the door. He seems like a nice guy (I'm yet to check out his legs), and the staff seem to like him, so I've been sure to tell them all about his little faux pas ;oP

Hogmanay

2011-01-08T22:24:00.004Z

As you know, I came up to Edinburgh to spend Christmas with my mum and step-dad. We had a lovely Christmas day together with delicious food (thank you Mum), quiet times, lots of wonderful presents, jolliness, crackers, relaxation, Christmas tree lights, carols on the CD player and record player (yes, a record player!), and even a few on the piano from Mum. It was lovely. Very relaxed. Boxing day was equally gentle, with my friend O coming round for tea and cake in the afternoon, and it was all very lovely. And then I started to feel a bit itchy scratchy in the throat and had a little cough beginning, but it wasn't too bad so I got on with it and thought it'd sort itself out soon enough. Monday came and I was feeling a little off colour, but nothing very precise - coughing more, a little snuffly, sneezing a bit, a tad under the weather - and I thought I was probably okay for going to the theatre to see 'The Secret Garden'. I'm glad I did. It was fantastic, and the only sadness was that there weren't more in audience.

Monday night was a bad night. I coughed and I spluttered, and I wheezed, and several times I considered waking Mum and J to suggest that I maybe get checked out at A&E. I didn't though, and eventually I got a very small amount of sleep, but I felt rubbish when I got up and soon decided that I should probably call NHS24 for some advice as my breathing was getting worse and my parents' GP surgery was closed for the Christmas break. It took a while to get through, but I did eventually get to speak to someone who went through a whole list of questions about my symptoms, some of which were fairly obvious, like the wheeze and shortness of breath. Then he said that he'd ask me some other standard questions, and question one was, 'Are you conscious and breathing?' !!!! Um, yes, you've been talking to me for the past 5 minutes, and although I've been struggling somewhat, I have been talking back to you, which kind of suggests that I am both conscious and breathing in a fashion. Question two: 'Are you short of breath?' !!! Er yes, the give away to that ought to have been the fact that I couldn't speak in full sentences and was wheezing down the phone. He seemed alarmingly surprised when I said that I was indeed short of breath. He put me straight through to a nurse, who was much more sensible, immediately said that she could hear that I wasn't too well and organised an urgent appointment for me with the doctor at the out of hours service at the Royal Infirmary at Edinburgh (RIE) for 25 minutes time, although she kept saying that if things got any worse then we were to call an ambulance. We didn't call an ambulance, but we did make our way straight to the OOH appointment, where I was seen very quickly. I wasn't even in the room before I was being told that there was little they could do for me and they were going to scribble a quick letter before sending me up the corridor to A&E. Soon enough I was attached to high-flow oxygen, a porter was called and a nurse was escorting me in a wheelchair to A&E, whereupon I found myself being rushed into resus under the care of the A&E consultant. I was going downhill, and it seemed to be progressing relatively rapidly. The A&E consultant didn't leave my side, the respiratory team were called, the ITU team were called, I was swabbed for swine flu just in case, although nobody expected I'd have it as I was vaccinated back in October, but it was routine procedure now for all asthmatics presenting at A&E to be swabbed.

I was scooped up and whizzed along to HDU as I wasn't getting any better. In fact I was getting a little worse. And then I got much worse, and a couple of hours later my mum was being called back to the hospital as I was being moved into ITU where they were fully expecting to ventilate me. To be honest I'm not entirely sure why they didn't, and I was so exhausted that I would almost have been thankful for them to do so, even though I knew there'd be no guarantee that I'd get off the vent if I went on it. I fought on. I started to wretch terribly, although nothing came up as I'd hardly eaten for 48 hours, but still, uncontrolled wretching is not fun and it's even less fun when you can't breathe to start with. And then my temperature rocketed up to 40C and I still couldn't breathe, and the aminophylline was taking a heck of a long time to do anything. And then my swab results came back and it transpired that I did indeed have swine flu despite the vaccination, so I was whisked into isolation where anyone who entered the room had to cover themselves in an armour of apron, gloves and face-mask, and despite it being intensive care, they all had to leave the room when I was on a nebuliser because of the risk of aerosol particles of the virus being blasted through their armour. Instead they watched me through the window until the nebuliser was finished and then came back into the room to do all the intensive care bits that they do. And oh my god, then the pain. Not just aches, but fire. My muscles were on fire. I was in tears, which again didn't help the breathing, but I couldn't help myself, and through the fire was intense ache. My toes ached. My little fingers ached. My skull ached. The roof of my mouth ached. I was still wretching. My temp was still sky-high. My breathing was rubbish. I thought I was going to die. I didn't. Slowly, ever so slowly, my breathing eased just a little, and then a little bit more, and then they did an aminophylline level, which came back showing that I was at the very top end of the therapeutic range, beyond which it is toxic. They had to reduce the dose they were giving me. I appeared to be doing okay so after two nights in ITU I was moved up to the respiratory ward, whereupon I rapidly declined, and within a matter of hours my aminophylline levels had zipped right down to the very bottom of the therapeutic range, and the drug was basically doing nothing for me any more. The Registrar did an Arterial Blood Gas (ABG) and upped the aminophylline infusion again. The gas came back showing a pO2 of 9.7 so I was given more oxygen. Soon afterwards another ABG was done and my pO2 was at 9.2, with my pCO2 rising to 4.9 (still within normal limits, but not good in asthmatics with a falling pO2, and the fact that it was rising was concern enough). The doc was trying to give the aminophylline a chance to get back up to more therapeutic levels, but it was taking too long and the next ABG showed my pO2 had gone down to 8.7 and my pCO2 was 5.2. The Reg said I was in respiratory failure and that I would be going back down to HDU. I was scared. It was the middle of the night and I was on my own so I texted some friends and asked them to pray for me whenever they picked up my message. Several texted straight back saying they were praying for me right away, telling me they were with me in spirit and holding my hand even though they were over 100 miles away. I felt their love. I was sure I was going to die, and I practically resigned myself to it. I kept feeling the fight slip from me. I was exhausted. I hadn't slept in five nights and all that time I'd been desperate for breath. I was ready to give up. My family and my friends weren't ready for me to give up. I prayed for God to do whatever was in his plan for me, and there began an almost physical battle to keep the word 'fight' going round in my head. I wanted to fight, but I also didn't want to fight. I had to fight. I fought. Another two days and nights of no sleep; complete exhaustion; and a week in critical care. New Year's Eve spent gasping for breath and clinging to life by a whisper. A hug from a nurse. A taste of shloer. A tear.

In the end I was well enough to leave HDU again and come back to the respiratory ward. Still wheezing. Still short of breath. Utterly exhausted. Desperate for sleep, for critical care is one of the noisiest places in a hospital, and lack of breathing isn't condusive to rest. Put in a room with three other patients with swine flu. All of us behind a closed door through which only masked, gloved, and gowned staff enter, and visitors come at their own risk. Visitors do come though - my mum, my step-dad, some wonderful friends I've met through the Open University, along with a friend travelling back to Aberdeen from Newcastle.

I sleep. I feel overwhelmed by all that has happened. I feel so very loved by my family and friends - those who are here and those who hold my hand at a distance. I am impressed by the care I have received throughout my travels around the hospital, and I know that I am safe in their hands, which is so important as it means I can relax and get on with trying to get better rather than worry about what they may or may not do. The staff have all been wonderful. The medical care has been fantastic. They have, I'm told, been in touch with Dr H to let him know what's been happening and say they'll probably call him again on Monday to give a progress report. They've asked me all the way along the line what I need, what works for me. They tell me to tell them what I need as I know my disease better than they do.

The water retention is bad again, which was a problem when I was down in HDU and they started to dry me out while I was there because they were concerned that my lungs were beginning to sound wet and they worried about me developing full-blown ARDS or SARS. My lungs are still groaning, but the main water retention problem is in the rest of my body now, which is very uncomfortable and sore so they're giving me diuretics twice a day to try to help sort it out. I'm not getting very far with it as yet, but I'm still attached to the aminophylline infusion at full dose and I can't move far off the bed so my mobility is very limited and that's one of the natural things that's most likely to help. The plan is to start reducing the aminophylline on Monday (they're reluctant to do so over the weekend when staff numbers are down and they've seen how quickly I can collapse), so hopefully I'll be off the drip by the middle of next week and able to start getting some mobility back and that'll help shift the oedema.

They reswabbed me the other day for swine flu to see if the Tamiflu had worked. It hasn't. I'm still positive so although I had a seven-day course of it, and the usual is five days, I'm back on it for at least another five days. At least my muscles aren't on fire any more, even if they do still ache sometime and my body feels like it's been put through a grinder, and my lungs are still gurgly.

This has been a horrible time. I feel rather shell-shocked. I feel overwhelmed and yet simultaneously oddly underwhelmed. It's going to hit me full-force when I'm home, I think. At the moment I'm still in the 'getting on with it' mode that is necessary for recovery.

I'm supposed to be going on holiday for a week with my good friend O next Friday. We're going to Lancashire for a week of relaxation and writing. It seems unlikely that we'll manage to get there on the day we're supposed to be going, but I'm definitely going to need a break after this, and I've missed out on so much over the past year that I'm damned if I'm going to miss all of this holiday with O. We've both been looking forward to it for ages. We will get to some of it. We will. We will have fun and enjoy each other's company. We will write. We will not spend any time with flying pigs, or eat pork scratchings, and I will get rid of this curly tail and snuffly snout.

2011 can only get better.

Sticky and slippy

2010-12-26T14:06:00.005Z

Way back in the mist of time, before the first Ice Age... Oh okay then, it wasn't all that long ago, and it wasn't the Ice Age as such, it was a month or so ago, and before the first lot of very cold weather this winter, but you get the picture - it seems like ages ago, and it seems as though this snowiness and iciness has been going on forever. Anyway, what was I saying? Yeah, right, well, I made crab apple jelly! Not only that, but I used the crab apples from the crab apple tree in my front garden (aka little patch of mud). And not only that, but it's a crab apple tree that I planted myself a few years back, and it had been a scrappy little thing I'd bought from the 'almost discarded' section of the garden centre. So the process began with the picking of the apples. I took the washing up bowl out to put them in, but there was so much fruit that there was still a fair amount left on the tree even after filling the washing up bowl with the little apples! The recipe was for 4lbs of fruit. I had 13lbs!

I was surprised at how mucky my hands were after picking the fruit as I don't put anything like pesticides or fungicides on the tree, so it must all have been 'natural' dirt and probably car fumes from the traffic on the relatively major road nearby. Needless to say, I decided that the fruit needed a very thorough clean before I started following Mrs Beeton's recipe for crab apple jelly, but once it was washed (and soaped!) and as clean as could be I divided the fruit up into portions of the correct weight for the recipe, and soon saw that I was going to be doing several batches of it. So here's a pic of one batch of the fruit:

Next came the cutting of the tiny apples, and throwing them in a pan with the water and spices:

And boiling them up until they were soft:

Then straining them to get all the lovely juiciness that would (hopefully) become the jelly:

And then boiling up, and trying not to burn, those lovely juices to thicken up:

Now, unfortunately, Mrs Beeton isn't too descriptive in her instructions for when the loveliness is ready to be put into jars, and just says it's ready 'when it sets quickly on a cold plate.' That's all very well, but what is the definition of quickly? I dunno. I still don't know, but I decided 30 seconds to a minute was probably about right, so after much testing I eventually got bored and decided it was ready. I ladelled it into jars, managing to get a fair bit of stickiness on the benches and around the kitchen, and most definitely over all the jars, some of which are still sticky despite the many wiping downs they've had. And after several repetitions of the whole process this was the product of my labour:

I have to say that I was rather impressed with myself, and more than a little surprised that it had all worked out. Not only that, but when I eventually got around to tasting it I discovered it was rather lovely! It goes amazingly well with a strong cheddar cheese, and it was also quite scrummy with the completely made up lentil loaf thingumy that I made for Christmas lunch with W on 17th December (we had an early Christmas together with lunch and a trip to the panto, which was all great fun). What's more, the jelly doesn't only taste scrummy, but it doesn't dribble all over the plate - it's actually jellified! Of course there was far too much crab apple jelly for me to get through so I've been giving jars of it away, and I brought some up to Edinburgh with me where I've been having Christmas with Mum and J.

I came up to Edinburgh on Thursday. Driving. In the snow. It was quite possibly the scariest drive of my life. For any of you who know the A1 north of Newcastle, you'll know that the vast majority of it is single carriage way. It's also now in a terrible state from the freezing temperatures that have wrecked the tarmac and created huge crevasse-like potholes. It's quite something to negotiate these craters, and I'm sure that they could cause a serious accident if a wheel got caught in them at just the wrong angle. So I was trying to avoid these, but at the same time I was having to concentrate hard as I was periodically engulfed in blizzards of snow that reduced visibility considerably, but which didn't deter some maniac drivers from getting right on my tail. My strategy when this happens is always to slow down. I know this may well frustrate the driver behind me even more, but to be honest, if I'm going to be smashed into I want it to be as low an impact as possible.

Then there was the slush and ice. Various stretches of road had been cleared by snow ploughs, but certainly not all, or by any means most. I followed the tyre tracks from the traffic ahead of me as much as possible, but this didn't stop me from occasionally sliding on the slush, and on three occasions I gently skated onto the other side of the road, unable to do anything about it until my car tyres found a bit of tarmac to grip onto again. Amazingly, each time I slid that far over the raod there wasn't any on-coming traffic so avoided a head-on collision and probable death. The road was generally quite busy - the 23rd December being the busiest day of the year for road traffic, apparently - so it surely was that God was watching over me while I travelled north that meant that on each of my excursions to the wrong side of the road there was nothing coming. The whole journey really was quite terrifying and I was exhausted by the time I got here.

I made it to Edinburgh and to my parents' house, and we have been having a lovely, quiet, gentle Christmas together, with an abundance of food (including some of my crab apple jelly) and an abundance of presents. It's wonderful. Neither my mum nor my step-dad are Christians (Mum's a hybrid of agnostic-atheist, whilst J is a committed atheist), but we did all go to the Nine Lessons and Carols service at St. Mary's Episcopalian Cathedral, where they both enjoyed the music, and I enjoyed the music and the joy of the true meaning of Christmas.

I hope you have all had a lovely Christmas and a peaceful time with family and friends. Happy Christmas, all!

Escape route

2010-12-11T19:29:00.007Z

It's been a wee bit chilly recently. You may have noticed. The two to three feet of snow was the give-away. Oh, and the icicles, which my neighbour knocked down in case they speared someone through the head whilst they stood at the front door. That was probably a good thing, although I was rather enjoying their loveliness, and amazed at the speed at which they were growing. They're gone now, as have the mountains of snow, because of the tropical temperatures we've had over the past two days. It's reached the amazing heights of 6C ! That's a whole 17 C higher than it was only a few days ago! Mind you, we're told to expect more chilliness and brrr-y weather next week.

It has to be said that I'm not a fan of the cold, and it does nothing for my lungs. They tend to seize up and complain, a bit like the rest of country when it snows, I suppose. Anyway, they didn't have a lot of opportunity for seizing up in the cold over the past couple of weeks as most of the time I was trapped in the house. This was in part due to the fact that I managed, somehow, to pick up yet another chest infection. I wasn't sure which way it was going to go, and it was looking increasingly like I was going to find myself slipping towards the Freeman again, but with the aid of domestos-strength co-amoxiclav and cillit bang-strength ciprofloxacin (both antibiotics) it looks like I've escaped hospital this time. Hurrah! I'm very tired still, and not up to doing very much, but at least that makes me sit still and get on with some catch-up OU work.

The other reason my lungs haven't had much opportunity to seize up because of the cold is that I haven't actually been able to get out into the cold very much. My electric wheelchair can't get through the snow, as I discovered a couple of weeks ago. I needed to go to the shops, so I wrapped up warm and set off out the backdoor (where the wheelchair access to my flat is), only to get stuck at the bottom of the ramp, three feet from the door. I tried going forwards, but got nowhere so I tried going backwards. I crashed into the wall and then got stuck again. I managed to slide a couple of inches forward once more, only to get trapped in the snow once more, and find that I was then well and truly stuck with wheels spinning but not gripping onto anything, and the kerb-climber getting completely wedged in the mountain of snow ahead of me. Luckily I was right beside the shed box and remembered that the padlock was merely an inelegant ornament, so I reached sideways, heaved the lid with it's weighty foot of snow on top, rummaged with one hand amid the paraphernalia, managing to avoid slicing my hand on the mitre saw that lurks somewhere in the depths of the box, and pulled out my spade. That was enough to get the old breathing bags complaining, but sitting out in the snow and -11 C temperatures was going to make things a whole lot worse, so I got stuck in to digging myself out. Not an easy task when you're stuck between a shed box, a wall, the side rails of a ramp, and a mountain of snow, but half an hour later I made it the three feet back to the door and was safely inside again. Great. Except that it made me realise that I was pretty much trapped in the house, possibly for the duration of the winter. However, the following evening W came to the rescue and dug me a path all the way from the bottom of the ramp to the back gate. Hurrah! I could go out! I could be part of the outside world!

I decided to make use of my escape route the next day, so once again got all wrapped up and set out to the shops and the post office. No problem getting out the back door. No problem getting through the back yard. Big problem once I got to the back lane. Two feet of snow covered the lane and Taz (electric wheelchair) had no chance of getting through it. I tentatively tried to go forward, but not having my spade to hand I was wary of going too far, which is a good thing as my front wheels very quickly got very stuck. Thankfully, the chair is powered through the back wheels and they were still able to get enough of a grip on a small speck of concrete that W had unearthed (unsnowed) to allow me to reverse. Full of disappointment I trundled back inside.

You'll know by now that I'm not one to be easily defeated, and this situation was no exception, so after sitting a little despondently for a couple of minutes in the middle of the kitchen I got the long-handled broom from the kitchen cupboard. Brush in hand I left the house again, whizzing through the backyard and stopping just before I got stuck in the lane. I started to try to clear a path up the back lane with the brush, but I didn't get very far, and decided that I'd have to get the spade instead. I returned to the house once again, dumping my bag because I figured that I may be sometime on this mission I was on, got the spade, scooted back to the lane and set to work shovelling a path through the snow. I made slow progress clearing the bit of road in front of me like a snow plough, moving myself forward as I went, but progress it was, albeit hard work and hot work. Being the stubborn sort I was determined to get to the shops, even though this meant clearing a path through the snow for 200-300 meters. I did around 50 meters before my arms were aching from the weight of the shovel and I was getting a tad warm (not to mention a wee bit short of breath and tight-chested), so I sat back for a breather (aka wheeze), just as a car passed by the top of the lane along the lane that runs at right angles. A few minutes later, just after I'd got back to snow-clearing, the car reversed and a woman in the passenger seat asked if I was okay or if I needed any help. I said that I was okay, but if they had any time, even a few minutes of help would be great. The woman got out of the car and lit up a fag, the daughter who was about 10 started scraping away some of the snow with her welly-booted feet, and the dad got a shovel out of the car and set to clearing my path for me. He made much more rapid progress than I had been making, and although I'd been planning on joining in with snow-clearing, I couldn't get to the bit that needed doing as this lovely man was directly in front of me. The woman took my spade from me and with a half-hearted effort moved a bit of snow around in front of the man, then stood back, smoked more of her cigarette, and watched her husband build up a sweat as he worked hard clearing the snow. I decided that there really wasn't any point in having my shovel out as I could no longer get to where it was needed, and the woman obviously wasn't going to use it (although she was very nice, chatted, and was the one who had originally asked me if I was okay), so I took the spade back inside and picked up my keys and shopping bag again.

As I arrived back in the lane the lovely man was joined by the estate agent from up the road. She'd got her enormous snow shovel from her car and was helping clear the snow. They'd got to the junction of the two back lanes, and although some of the base snow was compacted into ice (though the top snow was still too soft and deep for me to pass), they pressed on valiantly. Sue, the estate agent, then had to go as she had an appointment to get to, so she went off and the lovely man was left on his own again ... but not for long, because within minutes two lads who I think were students, came dashing out of their upstairs flat, from where they'd seen me out of the window. They were both wearing jeans and t-shirt, but also both brandished big shovels and big smiles, and immediately got stuck into the snow-clearing activity. The lovely man must have been exhausted by this time, having cleared 150 meters or so of snow for me, and he'd been beginning to wilt, but he seemed to get a new burst of energy from the appearance of these jolly student-types. Between them they got to the end of the lane within minutes, and saw me up the dropped kerb (once they'd located it under the snow) and onto the pavement. The lovely man left. Thankfully the student-type lads turned round to check I was okay before they headed back inside, because I promptly got stuck in the snow on the pavement. The lads leaped back into action, and dug a path for me through to the council-cleared section of pavement. I was able to get on my way and go to the post office, but I am ever so ever so grateful to my good Samaritans.

It snowed again that night. Heavily. My escape route was covered over and once again impassable. Still, I'd made it out, posted what I'd needed to post, and got some milk. The snow couldn't go on forever, surely. Hmm, well it soon felt as though it was going on forever, and I was becoming unwell so would need to find a way out once again to get to the doctor. I didn't have the strength to start digging through another couple of feet of the white stuff, so I sat and I thought. And I thought and I sat. And I came up with the idea of phoning the council to see if they could help. The woman in the council offices was very kind, but also very apologetic - they wouldn't be able to help as they usually would because the snow was so bad that all their resources were being taken up by clearing the roads and making sure the main routes to the hospitals and the main shopping areas were snow-free. Oh. Okay. I understood, and it wasn't her fault so there was no point in getting frustrated with her. I decided I'd sit tight and see what happened over the next day or two, but what happened was that the sky continued to fall in and the pond life in my lungs were taking more of a hold. I really did have to get out and get to the doctor.

I'd left it the weekend to see how things were going to pan out, but by Monday evening I could feel things getting a fair bit worse, so somewhere around 6pm I emailed Greg Stone, my Lib Dem councillor. I explained my situation, I said that I understood that the council had to prioritise roads and main shopping areas, but that I'd much rather see my own GP as soon as possible than end up in yet another life-threatening situation. I also pointed out that I'm 36 and need to be able to live a life beyond the walls of my flat, and that there's no way I can spend the whole of the winter shut indoors if the snow is set to stay with us till then. Within an hour Mr Stone had rung me back, saying that he was concerned to hear about my situation and that he'd get straight onto the case. At 8.30 the following morning two council workmen were at my back door with shovels, digging me another escape route all the way up to the local shops. They came knocking on my front door when they were finished, which wasn't until around 11am as they'd done an amazingly thorough job, getting right the way down to the tarmac, and ensured that the path was plenty wide enough for the wheelchair. They'd also gritted the whole lot to minimise any refreezing if it snowed again. I wanted to offer them a cuppa, but after apologising for the quality of the grit (!!!), and saying just to call if I need their help again, they were on their way.

There are some lovely people in the world, and all the good Samaritans who have helped get me through the snow deserve medals.

Aragog

2010-11-27T10:48:00.003Z

First of all I need to apologise for my long absense. I'm okay. I've been rather busy trying to catch up with my OU studies whilst starting my post grad studies at Newcastle University. In the past 10 days I've done six and a half weeks worth of OU work and written one and a half assignments. I've still a lot to do, but I'm getting there now.

So anyway, I realise that I owe you a story about a spider. It's from when I was in hospital the time before last.

The night before the spider event occurred I had a strange experience. I woke up several times through the night, and on each occasion I checked the time. The first time it was 1am. The second time it was 4am. The third time it was 6am. The fourth time it was 5.30am :oO Weird. The next night I told one of the nurses - R - about it and she said, 'Nooo, don't tell me that. I won't be able to come back in here now - it's too scary.' She then told me of several strange things that she's seen in the hospital over the years and that they all freaked her out.

A couple of hours later, when most were asleep but I hadn't been able to, R came rushing into my room.
'There's an enormous spider in the corridor and we don't know what to do!'
'You're not too scared to be in my room?'
'No. The spider is scarier. It's enoooooormous. We don't know what to do.'
'Um, put a cup over it, slide a piece of paper underneath the cup, scoop it up and put it out of the window.'
'We've put a cup over it, but we can't put any paper underneath.'
'Why not?'
'I'm can't touch it, D's too scared, and L isn't going anywhere near it.'

They were stuck. I was still attached to the aminophylline infusion and the oxygen, but all the same I could see that I was their only hope, so I gathered up my oxygen tubing and unpluged the infusion pump (it can run on battery for a couple of hours). I made it a couple of feet from the door before being stopped in my tracks by reaching the end of the oxygen tubing. I had no option but to do without the oxygen in order to save the nurses from the enormous spider that was terrorising them in the corridor.

I steeled myself for the encounter with Aragog that awaited me. I stepped out into the corridor, whereupon I saw the upturned cup concealing Aragog between my room and the nurses' station. I asked for a sheet of paper, then approached the cup brandishing the 'weapon'. I carefully slid the paper underneath the cup, stood up, and then wondered how I was going to carry the spider-containing cup to the window whilst still attached to the drip as I needed one hand to pull that along. I asked R for help.
'Noooo. I'm not going near the spider.
'I can't get rid of the spider if I can't get to the window.'
R conceded, although kept at full stretch of the drip line, and we made our way back to my room and to the window. After R flung the window open at arm's length, with a look of utter fear at seeing the enormous spider again, I removed the cup. I was faced with Aragog. I'd been expecting something of giant proportions. Aragog turned out to be about the size of a £1 coin.
'Honestly, R, that's not enormous.'
'Yes it is. Get rid of it. Please get rid of it.'
I shook the cup and paper and out fell Aragog.
'You do realise that we're on the 4th floor, R, don't you? The spider's probably just fallen to it's death.'
'I don't care. At least it's gone.'
I was getting rather out of breath by this stage due to the activity and lack of supplimental oxygen. R suddenly realised this and went back from terrified spider-hater to nurse. I was shuffled back to bed and had the oxygen put back on my face, whereupon I handed the cup and paper back to R, who was very reluctant to touch anything that Aragog had been near, but she did eventually take them from me, albeit holding them very tentatively.

A little while letter I was settling back down and not far from sleep when R came rushing back into the room.
'Oh no! I've just thought; the spider will probably come to haunt you!'
'What?'
'The spider's probably dead. Your room must be haunted because of what happened with the clock last night. The spider will come back!'
'I doubt it. I don't think spiders haunt people.'
'How do you know? I bet they do. I'm not coming back in here.
'Um. Okay...'
R left. I went to sleep. I never was haunted by Aragog.

A quick visit

2010-11-14T22:01:00.002Z

This is a quick visit to my blog during a quick visit to London. I'm visiting my brother and his family :o) I was supposed to have been at a one-day conference on 'Conflict in Children's Literature' at Roehampton University yesterday, but I knew that I wasn't going to have the energy for that so very reluctantly had to cancel my plans to attend. I'd been looking forward to it for months, but there's no way that I'd have managed with my energy levels as they are at the moment. However, I didn't want to cancel all my plans to come to London and stay with my brother, sister-in-law, and two gorgeous nephews, so that is where I am. It's my brother's 40th birthday on Monday, so we've had a bit of a celebratory day today with present time, and cake with candles at dinner time. My sister-in-law, N, and my older nephew, O, started making the cake yesterday, with the intention of making a car-shaped cake, but not being used to using wholemeal flour (to make the cake Aunty Becky-friendly), N didn't add quite enough liquid in the recipe and it all turned out a bit crumbly. Oops. Undeterred, the remains of the cake were put aside until today, when N and O had a go at adapting the car cake, mixed the crumbs with lots of whipped cream, put the remaining pieces of cake into a rough car-shape on top of the cream/crumb mix, piped freshly whipped cream onto the top to indicate wheels, lights, and windows, and hey presto, a scrummy car cake :o) It didn't taste anything like cars, though ... not that I've ever tried eating a car...

A couple of weeks ago, while I was in hospital, my older nephew, O, had chicken pox while the family were away in France. O is fine now, and it seemed as though my younger nephew, D, had somehow managed to escape catching chicken pox from his big brother. I had a bit of a dilemma before my visit as it could potentially be very dangerous for me to get chicken pox because of being on high dose prednisolone. I wasn't sure whether to risk coming or not, when it seemed that D would most likely get ill, even though he was so far okay. I spoke to a couple of friends who are GPs to ask for advice, and they both said that I should probably postpone my trip south. I was reluctant to do so, though knew that I would if it was really necessary, but first of all I decided to speak to my asthma consultant and see what he thought. I phoned his secretary on Wednesday, but it turned out that Dr H was away on annual leave last week, so explained my situation to the secretary who'd asked if any of the other consultants could help. Just as I was telling her about the chicken pox situation, one of the other consultants I know very well (in fact I've known him since he was a new registrar) came into the office so I spoke to Dr DS, who said that I should be safe enough as I had chicken pox as a child. Hurrah! The trip was on! And anyway, it seemed as though the M, N, O, and D household was chicken pox-free so it was all only precautionary in the first place :oD ... except that when we got up on Saturday morning it appeared that D hadn't escaped the affliction and was definitely a little bit spotty. Today there has been absolutely no doubt about it - he is a spot fest. He's mostly okay in himself, but he's very itchy and that gets him miserable. And now I feel a little, um, er, irresponsible. Perhaps I shouldn't have come. Even though I had reassurance from Dr DS that I ought to be okay, I do wonder if maybe I ought not to have put myself at potential risk :o/ I'm loving being here, and loving seeing all the family - especially the boys :o) - but have I done a stupid thing? I'm not sure. I don't know whether I should contact my GP when I get home or just wait and see if anything happens, which it probably won't, but I definitely don't want it to either. Hmmm. Am I daft? Have I been stupid? I fear the answer maybe yes ... It has been wonderful, though, to see O and D (and M and N too), and I don't want to go home tomorrow.

Take two

2010-11-05T15:12:00.003Z

I'm home. I got home early evening on Monday. I'm going to try to stay at home for longer than a week this time. So far the signs are good :o) I'm tired, and I get tired easily, but that's only to be expected given how poorly I've been and that I've spent the best part of six weeks in bed in hospital. Of course, being me, I've tried to jump straight back into life, albeit at a slightly slower pace.

After my cataract surgery my glasses prescription has changed quite significantly so that my current glasses are fairly useless. They're better than nothing, I suppose, but not terribly helpful, so the first thing I wanted to upon my escape from hospital was go to the optician for a sight test and to order new glasses. I went on Tuesday. While I was there I thought I'd ask the optician why the ophthalmologist had decided to make me short sighted in the left eye but keep me long sighted in the right eye - why not try to make my vision 20/20 (6/6)? The optician didn't know and couldn't explain. In fact, she seemed a little puzzled. She seemed even more puzzled that the ophthalmologist has not only made me short sighted in my left eye, but has made my overall vision worse with the lens implants he's put in. On the upside, as I no longer have natural lenses in my eyes then my glasses prescription is unlikely to change very much over the years, unless I develop fibrosis, which apparently is very likely because of the cataract surgery, although I was reassured that this is easily rectified with laser treatment. Anyway, I digress. Having had the sight test then began the awful process of having to choose new frames. I like having new glasses, but I hate the choosing of frames, partly because when you're trying the display frames on you can hardly see what it is you're trying on as they don't have prescription lenses in (of course!); partly because there's so much choice, yet often it's a case of finding what's nice amongst what I wouldn't be seen dead in; partly because whatever I choose is going to become part of my everyday appearance for at least the next year and probably longer; and partly because I'm often not very good at decision anyway. Dispensing opticians can be helpful in the decision making process, but they don't know you, and sometimes steer you towards frames they'd wear themselves rather than what you'd wear. Take the last time I was choosing glasses: I ended up having to gently ask if there was anyone else who could help me as the woman I had was 'suggesting' frames that were pink diamante things, which anyone who knows me will tell you is just not me - I don't 'do' pink, for starters - and most likely anyone who takes a minute to glance at me could probably tell as well. Thankfully, there were no such problems on this occasion, but it can be luck of the draw. So last time it took me two whole hours to choose frames! This time only an hour and a half ;o) I went for the two for one offer so that I can get one pair with reactor light lenses for driving, and also have two completely different styles to wear. The first pair I've chosen are these (in brown, not purple), and the second pair are these (in brown/green, not black/pink). Having bought them, I've now realised that one of my friends has the second pair in the black/pink combination, so that might be a bit odd, but I've warned her and we'll just have to live with it now. R, I'm not cloning you, honest ;oP I can't wait to get my new glasses because I soooo want to be able to see properly, and it won't be until I get the glasses that I'll realise the full benefit of the cataract surgery. I'm collecting them at 11.30 on Tuesday morning. The opticians can do single vision distance lenses in an hour, but I have varifocals, which take at least a week, usually ten days. I asked them if they could priorities my prescription given how useless my current glasses are to me, and they agreed to have them done by Tuesday - exactly a week :o)

The next thing I did was to test-drive a car! I have a motability car (no adaptations though), which means that I get a new car every three years. I can hardly believe that it'll be three years in January since I got my current car, but it will be so it's time to be looking for a new one and deciding if I want to stick with the same that I've had or go for a change. I've decided to go for a change. I've enjoyed the Nissan Note that I've got at the moment, but one thing that would be useful is a bigger boot as I can't actually fit my either wheelchair in the boot of this car. I can't afford a car that's big enough to take my electric wheelchair, but at the moment, even my manual/attendant assisted is having to go in the back behind the passenger seat.

I'm the kind of person who likes to do a lot of research into all the affordable possibilities before making a decision on a substantial purchase, often checking things out with Which? or their equivalent - in this case What Car? After a fair amount of deliberation and assessment of finances I decided that I'd like to have a closer look at the Vauxhall New Meriva so I booked a test-drive. I liked it. I liked it a lot. I ended up putting an order in. I've gone for the SE model 1.4litre 120bhp in Pepper Dust, with the 'sight and light' package (automatic lights and windscreen wipers). I'm also paying extra for a spare wheel because they don't come as standard (it comes with a tyre self-inflation kit instead) and after the tyre pop I had earlier this year I'm a little wary of not having a spare wheel. Those costs add up, but it's worth it. I won't get my new car until the end of January/beginning of February as that's when the lease on my current car runs out, but when the guy at the dealership looked at the computer he saw that there weren't actually any cars already built to my specifications so one is going to be built especially for me! How cool is that?! So now I have three months to get ridiculously excited about getting a new car, and I'll probably bore you silly with excitement between now and the end of January ;o)

Right-e-o, I'd better be off as W has just arrived and my step-mum is bringing my dad round imminently so that the three of us can go to a fireworks display at Segedunum. I like fireworks and didn't get to a display last year because I was in hospital, although W and I did our own display on the town moor earlier this year, which we'd postponed from last bonfire night. We had so much fun on the moor that we're actually going to do the same thing again, probably on 8th December after we've been to 'Wind in the Willows' at Northern Stage. It should be a fun day.

Extreme wheelchairing

2010-10-30T13:20:00.004+01:00

My dad has Lewy Body Dementia, but when I'm at the getting-lots-better stage of hospital admissions he often takes me out in my wheelchair for a breath of fresh air and general escape from the ward. However, this is quite an experience and something I've termed Extreme Wheelchairing.

On Thursday Dad took me to Paddy Freemans - the park directly opposite the hospital. I very nearly ended up in the pond. Dad was watching the ducks as he was pushing me along and he forgot not to steer me in the direction he was looking so I was rapidly heading towards the 'steps' that circle the pond. I was holding onto the oxygen cylinder so grabbing the breaks wasn't an easy task, and a certain amount of breath was used in raising my voice in a desperate kind of way until Dad realised where he was pushing me. I survived that only to have him nearly push me off the edge of the cliff into Jesmond Dene below. He was showing me the view, which was lovely (although I've seen it many times before I never tire of it), but I didn't want to become a part of that view. Again, there was a degree of desperation in my exclamation as my front wheels teetered over the edge of the cliff.

I went extreme wheelchairing again yesterday, but only within the hospital. We managed to take out a lady in the lift, which was rather mean as she had a chest drain in so can't have been feeling all that grand to start with. Dad then took me to the little coffee shop in the hospital W H Smith, which is the most wheelchair-unfriendly shop in the world with narrow aisles that the staff insist on making more impossibly narrow with boxes of things that ought to go on the shelves but they never get around to unpacking. It's horrendous. So we crashed into the crips aisle, ran over a woman in the random slippers and dog food (!!!) aisle, couldn't get down the magazine aisle, though that didn't stop Dad from trying, and smashed our way through to the till and coffee shop area, managing to swipe a hairbrush off the shelf with my wheel and not realising until I felt it as I tried to grab the breaks (almost dropping the oxygen cylinder in the process) as we crushed a bloke sitting at one of the coffee tables. Upon leaving, Dad tried to push me through a table and a chair until I suggested that he leave them in the shop and not push them all the way down the corridor in front of us - he just hadn't seen that they were there and attached to me. We came back to the ward relatively uneventfully, except for the close acquantance I made with the wall beside the huge double doors that were open but Dad still couldn't easily negotiate his way through, and a small crash into a porter with a wheelchair.

It really is quite an experience having someone with moderate dementia take you out in a wheelchair.

Hospital Use Only

2010-10-28T19:00:00.003+01:00

I didn't last long at home. One week exactly, that's all, and a strange week it was too. I went to a concert by Northern Sinfonia at the Sage Gateshead on the Saturday after I was discharged and picked up a cold from one of the many congested people in the audience. I could feel it scratching away in my throat by Sunday evening. By Monday I was beginning to cough and felt the bugs clawing their way south to my lungs. on the Tuesday I had to go and have bloods done at the GP surgery to rule out diabetes or thyroid problems as the cause of the neuropathy in my hands. I had a rubbish night on Tuesday with coughing, but nonetheless went to RVI on Wednesday morning for cataract surgery on my left eye. I expected them to turn me away because of my cold and cough, but the surgeon just said, 'Let me know before you're going to cough so I have time to pull the instruments away'!! I duly obliged - I didn't want to be his first accidental brain surgery patient, however good an eye surgeon he is. Fifteen minutes out of surgery and back on the day ward, with hardly time to feel relief that the operation was over, I had a call on my mobile from my GP. The blood tests I'd had the previous day showed I was 'dangerously hypernatraemic' with a sodium level of 152.
'Okay ... what do I do?'
'I don't know. We don't usually see levels this high. I'm going to call the hospital for advice. Are you feeling ill in any other way?'
'Um, yes, well it's hard to say because I'm full of cold and it's going to my chest so my breathing isn't that great, and I'm literally just out of cataract surgery.'
A moment's silence.
'Right. Okay. I'm going to phone the hospital and I'll call back soon.'
'... Okay ... is there anything I should do with my diet?'
'No, that won't make any difference.'
End of call. Anxiety sets in. I come to the conclusion that it's not a good sign when your GP phones you in a panic with no real idea of what to do.

She rang back five minutes later saying the hospital advise urgent repeat blood tests, and she'd made me an appointment for 4.30pm. so then I had to make sure I could leave the hospital to get to the GP surgery in time so had to tell the nurse on the day ward what was happening. That sent them into a bit of a spin, but also meant I got my eye drops prescription quickly and could leave. I'd texted my mum and step-dad (J) to tell them about the call from the doctor and then the appointment, and they came up to the hospital straight away. We went home and then a little under an hour later I was having my bloods redone. And then a bit of an anxious evening as I wondered what was going to happen.

...And then my cough changed to a really fruity rattle and rasp, and overnight the wheeze set in. It was a terrible night with very little sleep, and although I had an appointment booked with the GP for the following morning, I knew I wouldn't last that long so called the surgery, got an appointment for 10.10am that day (Thursday) and reluctantly checked and replenished supplies in my hospital suitcase. J drove me the four streets to the surgery and waited in the car.

The GP I saw has her room directly at the end of the corridor from the waiting room and she had her door open as I made my way towards her. She waved to me and gently said, 'Bad day?' I wheezed a yes, sat down and she closed the door behind me. She called the ambulance before she even got her stethoscope out, then stuck me on a nebuliser even though I'd just had one at home. I shed a few tears at her mention of hospital although I'd known it was coming. I just didn't have the mental or physical energy for this, and I hardly felt like I'd had any time free from hospital. She was gentle. She sympathised. There wasn't much more to be done. The rapid response paramedic came, closely followed by the ambulance crew. In the meantime I texted J to let him know what was happening, he phoned Mum then came into the surgery, and one of the other doctors - my usual - popped in to see what was happening and said, as if it were a normal occurrence (which it kind of is), 'Ah, you've got Becky G in here.' He gave me a gentle smile and left as the other GP came back in with a letter for the hospital and an update for the paramedics. We left the surgery and I was scooted off to A&E on blues and twos.

A&E was heaving. Mum said the waiting room was chock-a-block and people were lining the corridor on trolleys and chairs. I was in resus, where there were four beds but five patients - a RTC victim and another asthmatic having to take turns in the bed space next to me! Thirteen 5mg salbutamol nebs and several 500mcg ipratropium nebs later, and the starting of an aminophylline infusion, and I wasn't really any better, but after five hours I'd breached the four hour national treatment time target for A&E so was whisked off to the Emergency Assessment Unit (EAU) at RVI by two paramedics and a nurse escort.

EAU was heaving too, with a very disoriented and distressed old lady with dementia running around searching for someone called Maureen, and the nurses having to try to contain her when they were short-staffed to begin with. the doctors were busy too and really slow of the mark with me, so while the nurses were doing their best with the demented lady and seven other poorly patients in 'monitoring' (as well as other patients in the unit), they were also trying to keep a watchful eye on me and could see that I was deteriorating. They called ITU outreach to come and see me. Then the junior EAU doctor came to see me and he called the registrar, who came and put his stethoscope to my chest and immediately recoiled, exclaiming to no-one in particular, 'Oh dear.' He looked scared and didn't listen any more. The junior doctor called ITU. The nurse called the EAU consultant. The consultant said to call ITU again, get an urgent chest x-ray, and give me IV hydrocortisone. The nurse came and gave me half of the hydrocortisone injection then left, went to the nurses station where she promptly fell to the floor and had a fit! Another nurse gave me the rest of the injection and the ITU registrar came to assess me, immediately saying that I needed to go upstairs. My transfer to ITU was a little delayed by the nurse's fit, but not by too long, however it caused quite a stir as you may be able to imagine. As I was arriving on ITU the patient in the room next to mine was so disoriented through illness that they were getting aggressive, punched a nurse in the face and apparently broke her nose! The staff did well not to be too distracted, and I have to say that despite my previous negative experiences of RVI, this time ITU staff were very good and I had a very lovely nurse - Bonny - and a great student nurse - Kate - looking after me. I very narrowly missed being ventilated, but stayed in ITU for four days nonetheless before being shipped across the city again to Ward 29 at Freeman Hospital, where I am now. I was still pretty ill when I came here, the cold having turned into moraxella pneumonia, and then they also grew pseudomonas in my sputum. I've been and felt very ill and it's taken a heck of a long time to settle, needing to be on the aminophylline infusion for twelve days this time and only just feeling like I've really turned the corner yesterday. To be perfectly honest I wasn't convinced I was going to survive. in fact there was a point when I was in EAU when I suddenly became certain that I was going to get a little bit better before getting much worse and then die. It was an odd certainty, that clearly turned out to be wrong, but I think perhaps that certainty spurred me on to draw on every ounce of strength I could get from anything and everything. I texted friends and asked them to pray. They did. I survived. I feel lucky to be alive, very lucky. And I remember thinking, 'I'm damned if I'm going to die this close to getting my degree. I don't want the only letters after my name when I die to be R.I.P.'

And now I'm recovering. Still in hospital, but mending. However, it's been an awful time, and fast on the heels of my previous admission with a stressful, ill week between them, and I've felt very much like what is emblazoned on the hospital gowns I'm put in when I'm admitted and wear for several days until I can be bothered with my own pyjamas - 'Hospital Use Only.'

By the way, my sodium levels came back down to normal - high normal at 143, but normal - on their own. That's all a bit of a mystery, but it certainly caused some anxiety.

Briefly

2010-10-09T17:36:00.004+01:00

Very briefly dropping by to say that I'm home :oD I was discharged on Thursday late afternoon, despite feeling as though I may have been starting with a chest infection. The CT1 (SHO as was) said that I could stay if I wanted to, but I was determined to come home if at all possible, so I have been allowed to escape providing I got in touch with either them or my GP if the chest infection warning signs got at all worse. I promised I would. And first thing on Friday morning I was phoning my GP surgery for an appointment as I was producing pondlife :o( I'm okay, but I'm lurgified, and that seems grossly unfair. However, I now have PLECs - Pond Life Extermination Capsules - aka antibiotics, so I'm hoping they'll do the trick. While I was seeing the GP I asked about a short course of furosemide to help the water retention, and she was okay with that. I have to have my bloods done anyway (to check thyroid function and a diabetes screen, because of the possible carpal tunnel syndrome), so she's going to add on a renal function screening, although she could see from tests I had done in hospital that they appear to be okay. She was lovely. I hate my body, and I hate having it examined, but I knew she had to assess the oedema for herself so I let her and she put me at ease, and I was able to show her that although I'm far too big anyway, the *huge* pockets of fluid are not normal. She agreed. She was gentle while she examined me, but she could also see how tender I am, so she has given me a week's course of furosemide to help alleviate things. I have to go back to see her next week, partly to see how things are regarding the fluid retention, and partly regarding the chest infection. I hate that I seem to spend most of my life in hospital and doctor waiting rooms, but it really helps when the medics I encouter are so lovely.

By the way, I have a story to tell about a spider, but I'll get back to you with that next time.