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.
Tuesday, 17 January 2012
Tuesday, 10 January 2012
Below par
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(
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(
Saturday, 31 December 2011
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.
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.
Wednesday, 28 December 2011
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.
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:
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.
Saturday, 24 December 2011
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...
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...
Friday, 9 December 2011
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.
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.
Thursday, 1 December 2011
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.
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.
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