Review of the Year 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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!

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

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.