I crashed. It was very rapid. I'm alive, but it was a close call. Still in hospital, though not now in intensive care. I'll update properly when I can.
Wednesday, 23 January 2013
Wednesday, 16 January 2013
Which way?
I'm struggling with my lungs. I've been struggling on and off since the beginning of the year, but it's getting worse. Getting to sleep is a real problem, and once I do eventually get to sleep I keep being woken with a tight chest and wheezing. I'm tired from it and tired of it. I'm not yet needing to go to hospital, and there's still a chance that it might improve ... or perhaps that's wishful thinking.
Last night was bad. This morning was bad. The early afternoon was bad. I spent the day in bad until 6pm, and then only migrated to the sofa in the sitting room to watch telly and to be up when W came round to say hello. This evening has actually been a little better, but I'm still wheezing despite all the nebs.
I have a horrible feeling about this. I have a slight panic whirling around inside, as though my body is preparing itself for an assault, a fight. The night before last I was bradycardic with a pulse rate of only 48 bpm, which I've noticed often happens a little while before a big asthma attack. I don't know why it happens, and neither does my consultant, although he was interested to hear about it. Because of this, I'm not really sure whether or not to take the ivabradine that I'm prescribed for POTS as it reduces my heart rate (that's it's purpose). Most of the time I still need it, and I get very symptomatic with a multitude of symptoms if I don't take it, but should I take it when there's a chance of periods of bradycardia? The other thing to consider is, that when I'm in the throes of a severe asthma attack, conversely to this pre-attack time, my heart rate can go extremely high, which is also dangerous. If I take the ivabradine as prescribed then my heart rate doesn't usually go to the high extremes it will without it, although this reduced tachycardia often confuses medics in the emergency situation as tachycardia is a symptom of a severe asthma attack. It's all so complex.
As for what I'm going to do about my lungs, I don't know. I suppose my plan is as always and to see what happens, but I hate this waiting, and I hate the exhaustion that comes with difficulty with breathing. It consumes everything, because while I can do other things, at least part of my mind is always occupied with the act of breathing, which is exhausting in itself.
I saw the GP last week about the vitamin D preparation issue (I'm now waiting for a phone call from the GP surgery's pharmacist). Even though I go to the surgery in my wheelchair - Noah - I like to walk from the waiting room to the consulting room. When I did this last week I had to take a seat and a breather before I could speak to the doctor about why I was there. We didn't talk about my breathing at all, not that I really saw any reason to as my GP can't do anything more for me until I need an ambulance, or in the event of an infection he can prescribe antibiotics.
Last night I thought that I had a high temperature, but it was only 37.4C, which is up a little, but nothing to worry about, and I don't think I've got an infection. Saying that, W wasn't quite so sure about that when she came over this evening ... She also reckons I'll end up in hospital fairly soon. She might be right, though I'm hoping otherwise. Am I being unrealistic?
I don't know.
I may be seeing a doctor of some variety in the near future :o(
Wednesday, 9 January 2013
Ninety nine per cent
Ninety nine per cent is how certain the rheumatologist said he was that I have fibromyalgia (see my post 'Something else'). However, he had x-rays done and bloods taken just to check that one per cent of possibility that it could be something else causing my pain. There are many things that can cause some symptoms similar to Fibromyalgia Syndrome (FMS) that can be picked up in blood tests, including hypothyroidism and vitamin D deficiency. These are two of the things I was tested for.
The results for hypothyroidism came through clear, which I was expecting as I've been tested for this a few times, most recently before Carpal Tunnel Syndrome surgery. What I wasn't expecting was for the vitamin D level result to show that I am severely deficient. My GP told me that vitamin D levels are supposed to be between 75 - 100 nmol/l, but my result came back at 16 nmol/l. With this severely deficient level and some changes seen on my x-rays I have been diagnosed with osteomalacia, which is the adult equivalent of rickets.
Rickets, and the tell-tale bow-legged appearance of those with it, occurs in children before the bones' growth plates have sealed, but once these have sealed and growth has stopped, the diagnosis is osteomalacia, often (and in my case) with multiple fractures and pseudofractures throughout the body. This certainly explains some of my pain and tenderness. In fact, vitamin D deficiency may well explain the terrible cramping I've had in my hands and feet, the muscle weakness, the lethargy, fatigue, and exhaustion I've had in addition to that caused by the POTS I already have.
As severe vitamin D deficiency can cause problems with bone density, and I am already at risk of developing osteoporosis because of the long-term high-dose steroids I take, I have been referred to have a DEXA scan. The appointment has come through for 21st January. I've had them before, but my last one was two or three years ago, so it's definitely time it was done again.
In addition to all this, I had another letter from the rheumatologist saying that the x-rays of my hands show the possibility of 'an arthritis'. He hasn't specified what kind of arthritis, just saying that I have some 'bony cysts' and that 'closer studies are needed.' I have to have a CT scan of my hands next Monday (14th January), and then I suppose I wait to hear of the results from that before any firm diagnosis is given.
I guess that any treatment for arthritis might depend on the type of arthritis it is, if it is. The treatment for osteomalacia and severe vitamin D deficiency is, not surprisingly, high doses of vitamin D. The prognosis for osteomalacia is pretty good if the right treatment is given, and the fractures throughout my body should heal in three to six months of high dose vitamin D treatment.
However, there is a problem (isn't there always?). It is proving incredibly difficult - actually, impossible at the moment - to find a preparation of high dose vitamin D supplement that doesn't contain something else to which I am allergic. My GP has written to my immunologist for some advice, although this perplexes me somewhat as I'm not sure that he'll know anything more about vitamin D preparations than the GP. I'd have thought that pharmacists would be the folk to talk to, and that, if necessary, pharmacists would be able to make a preparation of vitamin D especially tailored to my needs. The thing is, that while the GP and I wait for a reply from the immunologist, who may not have any answers anyway, I'm not getting any treatment, and I presume my deficiency is getting worse. Mind you, I don't know how long it takes for these levels to decrease.
The other thing I'm not sure about is whether I'll have to undergo any investigations to discover why my vitamin D levels are so low. I know that anywhere north of Birmingham doesn't have enough UVB sunlight between October - April for anyone to produce adequate vitamin D, but most people store up enough through the summer months to see them through the winter. Also, my blood tests were done towards the end of November so I still had most of the winter to get through, so what are my levels going to be like by April?
Of course, all of this leaves me not knowing if I do actually have fibromyalgia as well, and my GP says we won't know for sure until I've been successfully treated for the osteomalacia/vitamin deficiency for six months. In the meantime I'm still taking the powerful meds for neuropathic pain whilst not being sure that I need to. I'd rather not take them if I don't need them, not least because they make me so dopey that if I need to get up in the morning then I can't take the full evening dose. I'm due to go back to my GP for a review of these meds, with a view to raising them further, but I think I'm going to suggest that I don't take them until it's proved that I need them. After all, they haven't actually helped ease my pain anyway. The problem, though, is managing to wake myself up in time to make that 8.30 am phone call needed to get an appointment with the GP.
Something I will probably never know the answer to is whether the rheumatologist in part made his 99% certain diagnosis of FMS because of my scars from self harm, the 'newest' of which is ten years old. It would seem that however many years pass from those terrible years of self-hatred, self-destruction, depression, and suicidality, I will most likely always be judged on them, and they will always influence doctors who treat me for whatever reason. I wonder how surprised the rheumatologist is that his 99% certainty has proved to be wrong.
The results for hypothyroidism came through clear, which I was expecting as I've been tested for this a few times, most recently before Carpal Tunnel Syndrome surgery. What I wasn't expecting was for the vitamin D level result to show that I am severely deficient. My GP told me that vitamin D levels are supposed to be between 75 - 100 nmol/l, but my result came back at 16 nmol/l. With this severely deficient level and some changes seen on my x-rays I have been diagnosed with osteomalacia, which is the adult equivalent of rickets.
Rickets, and the tell-tale bow-legged appearance of those with it, occurs in children before the bones' growth plates have sealed, but once these have sealed and growth has stopped, the diagnosis is osteomalacia, often (and in my case) with multiple fractures and pseudofractures throughout the body. This certainly explains some of my pain and tenderness. In fact, vitamin D deficiency may well explain the terrible cramping I've had in my hands and feet, the muscle weakness, the lethargy, fatigue, and exhaustion I've had in addition to that caused by the POTS I already have.
As severe vitamin D deficiency can cause problems with bone density, and I am already at risk of developing osteoporosis because of the long-term high-dose steroids I take, I have been referred to have a DEXA scan. The appointment has come through for 21st January. I've had them before, but my last one was two or three years ago, so it's definitely time it was done again.
In addition to all this, I had another letter from the rheumatologist saying that the x-rays of my hands show the possibility of 'an arthritis'. He hasn't specified what kind of arthritis, just saying that I have some 'bony cysts' and that 'closer studies are needed.' I have to have a CT scan of my hands next Monday (14th January), and then I suppose I wait to hear of the results from that before any firm diagnosis is given.
I guess that any treatment for arthritis might depend on the type of arthritis it is, if it is. The treatment for osteomalacia and severe vitamin D deficiency is, not surprisingly, high doses of vitamin D. The prognosis for osteomalacia is pretty good if the right treatment is given, and the fractures throughout my body should heal in three to six months of high dose vitamin D treatment.
However, there is a problem (isn't there always?). It is proving incredibly difficult - actually, impossible at the moment - to find a preparation of high dose vitamin D supplement that doesn't contain something else to which I am allergic. My GP has written to my immunologist for some advice, although this perplexes me somewhat as I'm not sure that he'll know anything more about vitamin D preparations than the GP. I'd have thought that pharmacists would be the folk to talk to, and that, if necessary, pharmacists would be able to make a preparation of vitamin D especially tailored to my needs. The thing is, that while the GP and I wait for a reply from the immunologist, who may not have any answers anyway, I'm not getting any treatment, and I presume my deficiency is getting worse. Mind you, I don't know how long it takes for these levels to decrease.
The other thing I'm not sure about is whether I'll have to undergo any investigations to discover why my vitamin D levels are so low. I know that anywhere north of Birmingham doesn't have enough UVB sunlight between October - April for anyone to produce adequate vitamin D, but most people store up enough through the summer months to see them through the winter. Also, my blood tests were done towards the end of November so I still had most of the winter to get through, so what are my levels going to be like by April?
Of course, all of this leaves me not knowing if I do actually have fibromyalgia as well, and my GP says we won't know for sure until I've been successfully treated for the osteomalacia/vitamin deficiency for six months. In the meantime I'm still taking the powerful meds for neuropathic pain whilst not being sure that I need to. I'd rather not take them if I don't need them, not least because they make me so dopey that if I need to get up in the morning then I can't take the full evening dose. I'm due to go back to my GP for a review of these meds, with a view to raising them further, but I think I'm going to suggest that I don't take them until it's proved that I need them. After all, they haven't actually helped ease my pain anyway. The problem, though, is managing to wake myself up in time to make that 8.30 am phone call needed to get an appointment with the GP.
Something I will probably never know the answer to is whether the rheumatologist in part made his 99% certain diagnosis of FMS because of my scars from self harm, the 'newest' of which is ten years old. It would seem that however many years pass from those terrible years of self-hatred, self-destruction, depression, and suicidality, I will most likely always be judged on them, and they will always influence doctors who treat me for whatever reason. I wonder how surprised the rheumatologist is that his 99% certainty has proved to be wrong.
Friday, 4 January 2013
Review of the year 2012
I know this is a little late, but I was very busy in the immediate run-up to New Year, and I've been wiped out since. Still, I thought that late was better than never, so here it is: the review of the year for 2012
1. What has been your biggest achievement this year?
Getting my MA. It was worth the work, but I've been exhausted much of the time, battling with various aspects of ill-health, so it was something of a miracle that I got through the MA and did so well.
2. What made you laugh most this year?
Probably a very drunken night (which is unusual for me) with W doing origami. For some reason - probably because of the alcohol - it was hilarious.
3. What unfulfilled hopes do you have for this past year?
To finish my book about my asthma and my hospital experiences.
4. What has been your favourite/most listened to piece of music this year?
Not one piece of music, but one (or rather two) CDs. I've mentioned the Swing Bridge Singers before, and back at the beginning of 2008 I wrote about the 20th Anniversary concert that had just taken place. That concert was recorded, and I ordered the CDs, but it took until this June to get them! Those CDs were the only CDs in my car for at least two months, so it's safe to say that they have been the most listened to pieces of music for me in 2012.
5. What was your best holiday this year?
I enjoyed both my holidays this year - one in June with my mum and J in Northumberland, and one in September in Norfolk with W. They offered different things so it's hard to say which was best.
6. What new skill, if any, have you acquired this year?
Crochet, sort of. I've learnt the basics of how to do it, and I've made a small mat, though I don't really know what it's a mat for. However, since making that I seem to have been unable to make a square with straight edges :o/ I'll have another go.
7. What's the best book you've read this year?
For some reason I only read 12 books last year, which is a bit lax for me. Anyway, out of those 12, the best was probably a book for teens, 'My Name is Mina' by David Almond. Definitely worth a read, and don't at all be put off by it being a book for teens.
8. What has been the biggest challenge of this year?
As ever, my health has been the biggest challenge. In fact so much has happened since I posted 'Something else' that I really need to update you all, but not tonight.
9. What is your happiest/fondest memory of this year?
In question 4 I talked about the Swing Bridge Singers 20th Anniversary concert. We've just had the Jubilee concert marking 25 years - one of the reasons I've been so exhausted since I got back from Edinburgh as the concert was on 30th December. It was absolutely fantastic, and after some very difficult times before Christmas it was definitely the happiest I've been for a long while.
10. Of what one creation of the past year are you most proud or pleased?
The second cross stitch in a series of three in a Japanese style. I'm currently working on the third in the series. The second one was of 'Birds in Wisteria'.
11. What new hobby did you take up/old hobby did you reinstate this year?
Singing. It's obviously a reinstating of an old hobby, but now that we've started Flotsam I'm singing in a structured way again, i.e. in a choir, and I'm loving it.
12. What one thing would you really like to do next year?
I would really like to finish both my current books and at least start along the track of getting them published. However, at the moment I have an horrific problem - the memory stick on which both my books are saved suddenly seems to have become corrupted! I am having a slight meltdown about this, and I'm hoping beyond all hope that it can be saved. Thankfully I have most of the important stuff on it printed out, but the thought of retyping all that work before I can continue on with it fills me with dread.
13. What was the saddest thing of this year?
Seeing someone I love disappearing in to dementia. It's terrible, and there's been a rapid decline in the last twelve months.
14. What has been your best discovery of this year?
That it seems that I might, possibly, maybe, actually be able to write for children. I mean, write in a child-friendly way with stories that they like. Writing for children was excluded from either of the creative writing modules in my undergraduate degree, although it was something I always wanted to do. It's been great to have the opportunity to try it in my MA and find that I seem to be okay at it.
15. What news story of this year has had the biggest impact on you/do you most remember?
The one that had the biggest emotional impact on me was probably the recent shootings in Conneticut. They were so tragic, so terrible, so needless, so devastating.
16. What's the best film you've seen this year?
I've hardly been to the cinema at all this year. Three times in all, I think. One of those films was 'The Artist', which was masterful!
17. What was your best buy this year?
I would say my car, but as it's a Motability car then I haven't really bought it. All the same, that will be my answer. It's fantastic to have a car in which I can get my electric wheelchair - it's given me back my freedom. I've already done more miles in it since the end of June, than I did in sixteen months of having my previous car simply because I can get my wheelchair in to it and be completely independent again.
18. What has been your best day out this year?
Most likely the Friday towards the end of August when I first went to County Durham to see my older Godson the day before his birthday, and then I went up to Beamish Museum for the Paralympic Flame Event. I didn't get to carry the flame, but as I'd been nominated to do so I got a VIP ticket to attend, and I had a fabulous time.
19. If there’s one thing you did this year that you’d do differently if you could, what would it be?
A difficult situation that I didn't deal with as well as I would have liked.
20. Is there anywhere you'd like to visit next year?
I would like to venture to the south coast again. I think I said that last year, actually, and I didn't quite make it that far, but yes, I'd like to go somewhere along the south coast that I haven't been to in previous travels. I may even take a holiday on my own down that way.
21. Name one thing you did this year that you'd like to do again?
Hmmm, it's been a strange old year so it's a difficult question... There's a place just a little way out of Edinburgh that I went to with Mum and J when I was up there a little while back. I think it's called Flotterston, though I'm not too sure. Anyway, I'd like to go back there. It was beautiful.
22. Who gave you the best advice this year?
My GP. She told me to keep living my life, even if I have to do it differently from how I would have hoped.
23. What new skill would you like to acquire next year?
The skill of finding an agent and a publisher ;o)
24. What was your favourite TV/radio programme this year?
My favourite TV programme was, once again, Miranda. I love it. It's hilarious and is guaranteed to make me laugh whatever mood I'm in. Radio? I don't think there's one specific programme, but I've really enjoyed some of the Radio 4 Afternoon Dramas this year.
25. What would you like to make more time for next year?
Writing. I mean writing in a more self-structured way. I don't have the discipline of university now, so I have to find a way to do this myself. Ironically, I think that part of making sure I get down to the writing will entail me getting busier with some other things. That way I'll be able to have a more structured life, and will have definite times when I know I can't write, so I will have to make time specifically for writing.
26. What has been the biggest disappointment this year?
Probably not managing to get to the 'meet' in Liverpool with a group of my OU friends. On the morning that I was supposed to be setting off - the day before the meet - I woke up with terrible gastroenteritis and a sky-high temperature. The actually day of the meet was when I ended up in hospital with anaphylaxis after taking rehydration salts. I still don't know what it was in them that caused the reaction. Anyway, I was extremely disappointed not to get to the meet as I'd been looking forward to it for a long while, and they are great friends.
27. What was the best or most enjoyable concert you went to this year?
I've had several concerts booked to go to, but haven't got to any of them because I've ended up in hospital each time instead. I suppose then, that rather than it being a concert for which I was going to be in the audience, I will have to say that the most enjoyable concert I went to this year was the Swing Bridge Singers Jubilee concert on 30th December. Brilliant!
28. What do you think was the best thing that you did for yourself during the last year?
Start seeing a psychologist again. It's hard work - therapy always is - but it's worth it. My health is crap and it gives me a lot to contend with. It was getting on top of me and I'd hardly realised quite how much it was wearing me down. Although I had to wait a long time between the referral, the initial assessment, and eventually starting session, it was actually fortuitous that I started them at a time when there have been so many new diagnoses possibilities flying around (I really must give an update about all of that) and a time of flux for other reasons.
29. What is the biggest difference in yourself from this time last year?
I think the biggest difference is that I'm not feeling very settled. This time last year I knew where I was up to, what I was doing, where I was aiming for, what my goals were, and I had a structure to do all that. Now there are so many uncertainties and no structure at all.
30. What are you most looking forward to about next year?
Writing and living. I had an experience at the end of 2011 that made me doubt that I would be alive at the end of 2012 (I don't really want to say anything more about that for now), so yes, living and being a part of 2013 is my answer, and writing is a part of that.
So what about all of you? Tell me your answers to some of these questions, even though it's a little late as a review of 2012. I'd like to learn a little more about some of you.
Wednesday, 26 December 2012
Happy Christmas
This comes to you just minutes too late for Christmas day, but I hope you all had a very happy Christmas, and that you enjoy the rest of the festive season too. I'm up in Edinburgh again, staying with Mum and J. We've had a gentle day with lots of food, lots of presents, lots of telly, lots of turkey (my first turkey for 20 years!), a brief walk/trundle this evening, and a smidgen of alcohol. Actually, the only alcohol I've had has been in the pudding that mum made, and which contained rather a lot of delicious Bailey's - mmmmmmm. It's been a lovely day, and I feel very blessed to have had the Christmas I have.
I am aware that I need to do a proper update very soon, and that (yet again) it is far too long since I last posted, but rather a lot has been going on, and I've been exhausted. One of the lovely things about coming up to stay with Mum and J is that I've been able to rest and get some much-needed sleep. I'm away from all the stress and difficulties at home, and for a week or so I am free of hospital appointments. Having said that, there's some question as to whether or not I may need to venture up to the Edinburgh Royal Infirmary at some point as I seem to have hurt my foot by running over it in my wheelchair. I think I am possibly the only person who could mow themselves down in their own wheelchair whilst sitting in it, but I did.
I went to the local church last night for the Christmas Eve midnight service, at 11.30 ... Mum had been going to go with me, but in the end she was too tired so I went on my own. It's a beautiful little church and I was made to feel very welcome. The service was lovely, the address was short (which is what you want at a late night service, in my opinion), the carols were great, the organ/organist was stunningly fantastic. I trundled back to the house in the freezing temperatures feeling warm on the inside. I got to the front door with the ramp still resting in its place on the top step, but I thought that the door had perhaps knocked it forwards a little. To make sure that it was going to be safe for me to go up, and to ensure there were no accidents (little did I know!), I thought it would be wise to push the ramp just a little further on to the step. I took my feet off the footplates and put them on the ground behind so that I could more easily reach the bottom of the ramp and I bent forwards. As I bent forwards my coat caught the joystick control of my wheelchair, thus sending it shooting forwards. My feet, being on firm ground, stayed where they were, and the forward-moving chair propelled the rest of me straight ahead, and then straight down as my bum left the chair. My coat eventually disentangled itself from the joystick control and the chair came to a halt, but by that time I was sprawled flat on my tummy, head-first up the ramp with the wheelchair on top of me. I lay there for a moment thinking, 'Ow!' and then imagined myself spending the night outside in that position, knowing that Mum and J would have gone to bed.
Staying like that wasn't really ever an option, partly because it was so cold, and partly because bits of me were in rather odd and painful positions, not least my feet that were basically folded in half at the base of my toes, and weirdly angled in the middle. I somehow got half way on to my knees, lifted my bum in the air, and twizzled my right arm behind me so that I could feel the joystick, which I then managed to knock backwards a little. The wheelchair clunked as it fell off the backs of my legs, and I was able to get more fully on to my knees, although the bottom of my legs and feet were still underneath the chair, and kind of trapped by the footplates. But once I got on to my knees I could twist round to see what I was doing with the joystick controls and was able to manoeuvre the chair backwards. At last I got my feet out, sore as they were, and was able to scramble back in to the chair. A good look around told me that, thanks to the long garden path and the fact that it was 12.30 am, nobody had witnessed my late night sprawl and clatter on the ramp, but a glance at the ramp also told me that it had indeed slipped a little way off the front door step. I then did what I ought to have done in the first place: I turned off the power on the chair before leaning forward and pushing the ramp back in to position. Only when I was safely sitting upright again did I turn the power on again, trundle up the ramp and go inside the house.
I'd only had one Bailey's and that had been several hours previously before dinner. I can tell you don't believe me, but it's true!
So yes, I have a sore foot, which may need looking at, but I'm hoping it'll sort itself out in the next day or two.
Anyway, happy Christmas, everyone!
I am aware that I need to do a proper update very soon, and that (yet again) it is far too long since I last posted, but rather a lot has been going on, and I've been exhausted. One of the lovely things about coming up to stay with Mum and J is that I've been able to rest and get some much-needed sleep. I'm away from all the stress and difficulties at home, and for a week or so I am free of hospital appointments. Having said that, there's some question as to whether or not I may need to venture up to the Edinburgh Royal Infirmary at some point as I seem to have hurt my foot by running over it in my wheelchair. I think I am possibly the only person who could mow themselves down in their own wheelchair whilst sitting in it, but I did.
I went to the local church last night for the Christmas Eve midnight service, at 11.30 ... Mum had been going to go with me, but in the end she was too tired so I went on my own. It's a beautiful little church and I was made to feel very welcome. The service was lovely, the address was short (which is what you want at a late night service, in my opinion), the carols were great, the organ/organist was stunningly fantastic. I trundled back to the house in the freezing temperatures feeling warm on the inside. I got to the front door with the ramp still resting in its place on the top step, but I thought that the door had perhaps knocked it forwards a little. To make sure that it was going to be safe for me to go up, and to ensure there were no accidents (little did I know!), I thought it would be wise to push the ramp just a little further on to the step. I took my feet off the footplates and put them on the ground behind so that I could more easily reach the bottom of the ramp and I bent forwards. As I bent forwards my coat caught the joystick control of my wheelchair, thus sending it shooting forwards. My feet, being on firm ground, stayed where they were, and the forward-moving chair propelled the rest of me straight ahead, and then straight down as my bum left the chair. My coat eventually disentangled itself from the joystick control and the chair came to a halt, but by that time I was sprawled flat on my tummy, head-first up the ramp with the wheelchair on top of me. I lay there for a moment thinking, 'Ow!' and then imagined myself spending the night outside in that position, knowing that Mum and J would have gone to bed.
Staying like that wasn't really ever an option, partly because it was so cold, and partly because bits of me were in rather odd and painful positions, not least my feet that were basically folded in half at the base of my toes, and weirdly angled in the middle. I somehow got half way on to my knees, lifted my bum in the air, and twizzled my right arm behind me so that I could feel the joystick, which I then managed to knock backwards a little. The wheelchair clunked as it fell off the backs of my legs, and I was able to get more fully on to my knees, although the bottom of my legs and feet were still underneath the chair, and kind of trapped by the footplates. But once I got on to my knees I could twist round to see what I was doing with the joystick controls and was able to manoeuvre the chair backwards. At last I got my feet out, sore as they were, and was able to scramble back in to the chair. A good look around told me that, thanks to the long garden path and the fact that it was 12.30 am, nobody had witnessed my late night sprawl and clatter on the ramp, but a glance at the ramp also told me that it had indeed slipped a little way off the front door step. I then did what I ought to have done in the first place: I turned off the power on the chair before leaning forward and pushing the ramp back in to position. Only when I was safely sitting upright again did I turn the power on again, trundle up the ramp and go inside the house.
I'd only had one Bailey's and that had been several hours previously before dinner. I can tell you don't believe me, but it's true!
So yes, I have a sore foot, which may need looking at, but I'm hoping it'll sort itself out in the next day or two.
Anyway, happy Christmas, everyone!
Wednesday, 5 December 2012
Something else
There has been another long gap between posts, for which I apologise, but it's been for good reason. I've been putting off writing this post - the post I promised you would be next. I'm having a tough time and I've needed a bit of space.
Back in at the beginning of the summer I started to get pain and stiffness in my hands, in all the small joints of my fingers. It quickly spread to both of each of my knees, my elbows, my shoulders, my hips, my feet, and my wrists. Every morning I wake up and dread moving because I know it's going to be painful. I went to my GP and was referred to a rheumatologist with the suspected diagnosis of rheumatoid arthritis. I have to admit that I was anxious. Rheumatoid arthritis is a horrible disease that attacks the joints, but after reading about it, I was bracing myself for a confirmation of my GP's suspicions.
The appointment with the rheumatologist was on the penultimate day of my last admission for my asthma. Luckily it was in the same hospital that I was an in-patient so I was still able to attend.
I was in with the rheumatologist for about three quarters of an hour. He took a full history and family history; he noted symptoms; and he did a physical examination. He then said that he's about 99% sure I don't have rheumatoid arthritis, but that I do have fibromyalgia, although he's taken x-rays and bloods to be certain, and to check a few other things that can cause similar pain.
I had heard of fibromyalgia before, and know several who have it, but I didn't really know much about it, except what I was experiencing myself. Although I was obviously relieved that I don't have RA, because I was almost geared up to hear that I did have it, it came as more of a shock really to be told that I have FMS instead. It's scared me. I know it's not a degenerative disease, so I ought to be thankful, but it is a chronic problem, and it is a painful condition. It is a condition that, for many years, was dismissed as psychosomatic, and because of that I have felt some stigma attached to it. More recent research has shown that it's actually a Central Nervous System (CNS) disorder, and the rheumatologist described it as a sleep disorder. It's very complicated, and it's been difficult to get consistent, reliable information about it.
The rheumatologist said that for one reason or another people with fibromyalgia have difficulty with sleeping. Many have insomnia, but more than this, it has been shown that those with FMS don't go in to stage four sleep - the deepest part of sleep; the part of sleep that is responsible for repair and restoration. As a result of not entering this fourth stage of sleep, the body has a pain response, which itself then leads to more disrupted sleep. However, the answer doesn't seem to be as simple as getting more sleep, and sleeping tablets don't help. In fact, not a lot seems to help, including many pain killers. The pain that those with FMS feel is a nerve pain - neuropathic pain - so, it seems, is best treated with neuropathic pain killers, which are most usually used as anti-epileptic drugs (though epilepsy and FMS are not at all the same thing or related). I have been started on pregabalin, although it's a medication that needs to be increased slowly, so I'm only on a very low dose at the moment. It will gradually be increased.
I was told that the pregabalin may not be enough, and that I may need a referral to the Pain Clinic at the other big hospital in the city, where they have access to other meds, and other forms of pain relief such as TENS, although I don't know how effective TENS is in FMS. I'm not at the stage of getting a referral to the pain clinic yet, though.
I've found it hard getting this diagnosis, and one of the things I've found hard is that many of those with FMS say that getting their diagnosis was a relief. I didn't feel this way. I felt ... I don't know ... almost physically winded. I felt shocked, because it wasn't what I was expecting or had geared myself up for. I've since felt isolated because I haven't felt the relief that others have spoken of. But the difference is that, for many, probably most, the road to a diagnosis of FMS is very long with many tests and many referrals for investigations. I haven't. I'm pleased I haven't, but as I say, this difference has made me feel alone. And I feel alone because FMS is a diagnosis that most people don't seem to know about, or they know the old thinking of it being psychosomatic. It isn't understood well even in the medical profession, and I am afraid. I'm afraid that many medics will have the same out-dated perception of FMS as a psychosomatic illness, and that when my FMS diagnosis comes to light while I'm being treated for my asthma, then the asthma too will be dismissed and I will be under treated. Perhaps that doesn't seem like a fair assessment of how things might be, but I base this on past experience, not of FMS, of course, but of self harm. My scars are very old, but they're still very visible, and sometimes those scars have made some medics discount my asthma. I have been under treated as a result. I have almost died as a result of that under treatment.
It is very dangerous for a medic to presume that because someone has had mental health problems in the past that the same person can't possibly have anything physically wrong with them. It is very dangerous, but it does happen, and when it happens it can have disastrous consequences. Because it has happened to me before with the scars from old self-harm, it terrifies me that the same will happen with current fibromyalgia, with old attitudes towards it, and my very real, very physical asthma. I am at the mercy of medics and their understandings, and when I'm in the middle of an asthma crisis I have no voice because I have no breath to speak. It is amazing, in a terrifying way, that even when I am like that, and medical findings in blood tests and x-rays confirm the asthma crisis, they can all still be ignored and disregarded if the medic has a negative mentality towards mental health issues, or physical conditions once considered psychosomatic.
So no, I am not relieved, and yes, I am scared. I am very scared, and I feel very alone.
Back in at the beginning of the summer I started to get pain and stiffness in my hands, in all the small joints of my fingers. It quickly spread to both of each of my knees, my elbows, my shoulders, my hips, my feet, and my wrists. Every morning I wake up and dread moving because I know it's going to be painful. I went to my GP and was referred to a rheumatologist with the suspected diagnosis of rheumatoid arthritis. I have to admit that I was anxious. Rheumatoid arthritis is a horrible disease that attacks the joints, but after reading about it, I was bracing myself for a confirmation of my GP's suspicions.
The appointment with the rheumatologist was on the penultimate day of my last admission for my asthma. Luckily it was in the same hospital that I was an in-patient so I was still able to attend.
I was in with the rheumatologist for about three quarters of an hour. He took a full history and family history; he noted symptoms; and he did a physical examination. He then said that he's about 99% sure I don't have rheumatoid arthritis, but that I do have fibromyalgia, although he's taken x-rays and bloods to be certain, and to check a few other things that can cause similar pain.
I had heard of fibromyalgia before, and know several who have it, but I didn't really know much about it, except what I was experiencing myself. Although I was obviously relieved that I don't have RA, because I was almost geared up to hear that I did have it, it came as more of a shock really to be told that I have FMS instead. It's scared me. I know it's not a degenerative disease, so I ought to be thankful, but it is a chronic problem, and it is a painful condition. It is a condition that, for many years, was dismissed as psychosomatic, and because of that I have felt some stigma attached to it. More recent research has shown that it's actually a Central Nervous System (CNS) disorder, and the rheumatologist described it as a sleep disorder. It's very complicated, and it's been difficult to get consistent, reliable information about it.
The rheumatologist said that for one reason or another people with fibromyalgia have difficulty with sleeping. Many have insomnia, but more than this, it has been shown that those with FMS don't go in to stage four sleep - the deepest part of sleep; the part of sleep that is responsible for repair and restoration. As a result of not entering this fourth stage of sleep, the body has a pain response, which itself then leads to more disrupted sleep. However, the answer doesn't seem to be as simple as getting more sleep, and sleeping tablets don't help. In fact, not a lot seems to help, including many pain killers. The pain that those with FMS feel is a nerve pain - neuropathic pain - so, it seems, is best treated with neuropathic pain killers, which are most usually used as anti-epileptic drugs (though epilepsy and FMS are not at all the same thing or related). I have been started on pregabalin, although it's a medication that needs to be increased slowly, so I'm only on a very low dose at the moment. It will gradually be increased.
I was told that the pregabalin may not be enough, and that I may need a referral to the Pain Clinic at the other big hospital in the city, where they have access to other meds, and other forms of pain relief such as TENS, although I don't know how effective TENS is in FMS. I'm not at the stage of getting a referral to the pain clinic yet, though.
I've found it hard getting this diagnosis, and one of the things I've found hard is that many of those with FMS say that getting their diagnosis was a relief. I didn't feel this way. I felt ... I don't know ... almost physically winded. I felt shocked, because it wasn't what I was expecting or had geared myself up for. I've since felt isolated because I haven't felt the relief that others have spoken of. But the difference is that, for many, probably most, the road to a diagnosis of FMS is very long with many tests and many referrals for investigations. I haven't. I'm pleased I haven't, but as I say, this difference has made me feel alone. And I feel alone because FMS is a diagnosis that most people don't seem to know about, or they know the old thinking of it being psychosomatic. It isn't understood well even in the medical profession, and I am afraid. I'm afraid that many medics will have the same out-dated perception of FMS as a psychosomatic illness, and that when my FMS diagnosis comes to light while I'm being treated for my asthma, then the asthma too will be dismissed and I will be under treated. Perhaps that doesn't seem like a fair assessment of how things might be, but I base this on past experience, not of FMS, of course, but of self harm. My scars are very old, but they're still very visible, and sometimes those scars have made some medics discount my asthma. I have been under treated as a result. I have almost died as a result of that under treatment.
It is very dangerous for a medic to presume that because someone has had mental health problems in the past that the same person can't possibly have anything physically wrong with them. It is very dangerous, but it does happen, and when it happens it can have disastrous consequences. Because it has happened to me before with the scars from old self-harm, it terrifies me that the same will happen with current fibromyalgia, with old attitudes towards it, and my very real, very physical asthma. I am at the mercy of medics and their understandings, and when I'm in the middle of an asthma crisis I have no voice because I have no breath to speak. It is amazing, in a terrifying way, that even when I am like that, and medical findings in blood tests and x-rays confirm the asthma crisis, they can all still be ignored and disregarded if the medic has a negative mentality towards mental health issues, or physical conditions once considered psychosomatic.
So no, I am not relieved, and yes, I am scared. I am very scared, and I feel very alone.
Thursday, 22 November 2012
What happened next?
I'm guessing that's the question you're asking after my last post, and my rather hasty exit. Sorry about that. I was taken rather by surprise if I'm honest. Perhaps I should have been expecting to be going in to hospital, but I really wasn't. I thought that I ought to take my GP's advice and phone my consultant for a plan of action, though I hadn't really thought through that the advice would be 'Go to hospital. Go directly to hospital. Do not pass go, and do not collect £200' ... not that I've ever collected £200 on my way to hospital ... although it is the kind of thing I would consider doing in an hypoxic brain muddle, isn't it?
Anyway, what happened is that I came to the ward in a more relaxed way to most previous admissions, ie, not in a life-threatening state, which was good, but also rather strange and I felt like something of a fraud. However, when the Registrar came to see me she looked rather horrified when I said that my daytime peak flow (PEF) was averaging at around 150. In fact, the look on her face made me think that perhaps I shouldn't admit that my night time peak flow was more like 90, so I kept that quiet, which really should have been enough to make me realise that I was far from fraudulent... Then she listened to my lungs. Again, afterwards she looked at me somewhat aghast and said, 'They sound very, very tight.' The did feel tight, but as it had been creeping up on me for so long I'd been getting used to it so I didn't feel as tight as perhaps I would have done if my lungs had suddenly clamped down like that. It's a known phenomenon of brittle asthmatics, and a rather dangerous one too, that sadly increases our risk of mortality. Thankfully, this time I didn't die and I didn't slip in to crisis.
The main plan of attack (no pun intended) was an infusion of aminophylline to try to get things a bit steadier. Aminophylline is my wonder drug, but it doesn't kick in straight away, which is often a worrying thing when I'm in crisis as time is something of which I don't necessarily have the luxury. This time it wasn't so much of an issue, except that I was generally exhausted and was desperate for a good night's sleep. The first night here wasn't to be a good night and I had the same difficulties as I'd been having at home, although perhaps not to quite the same extent. The second and third nights were slightly improved on the first, though still not great, but the fourth was easier, after which the aminophylline infusion rate was reduced.
I always get nervous at the time of aminophylline weaning because there have been so many times in the past when I've gone right back to square one after aminophylline reduction. Of course, at these times I'm only just beginning to regain a smidgen of strength after the exhausting fight for life I've had, so then thought of having to begin that fight all over again is both utterly draining and terrifying. I was still a little anxious about it this time, but not as much since things hadn't been so awful at the outset.
The infusion came down completely this morning and I've been okay. Because of the scenario above, there's no way I could go home on the same day as coming off the infusion, but seeing as I've been okay today back on the oral preparation of the drug I should be able to go home tomorrow. Excellent news!
It's been an odd admission for me, partly because I wasn't in such a crisis when I came in. This is good, but it's very unusual. Because I wasn't in a life-threatening state on admission I didn't have to be in a room right next to the nurses' station where they could keep an eye on me, so I've spent the past week in the last cubicle in the bit of corridor around the corner at the end of the ward. I've never liked being round here. It's lonely. It's right of the way and you never actually see anybody unless they come specifically to see you. Nobody passes the room on their way to anywhere else, and most of the time you barely know who's working on the ward except for the nurses immediately looking after you. It's not that I want to be in the middle of everything - I don't - it's that I do get very lonely having to spend a week almost entirely on my own, and because I have this long-standing MRSA positive status I'm not allowed out of the room.
The trouble with getting lonely is that it makes me think, and I usually end up getting in to a negative frame of mind and thinking about all the difficult things that are going on. Sometimes that's just the immediate situation and the recent asthma crisis, but when there are other things outside of that going on then they often pile in too. Then I get in to a bit of a state - miserable, tearful, depressed even. Unfortunately this is what happened on Sunday as there have been rather a lot of other things going on in recent times. Some of things I'm not really at liberty to talk about here, but one that I will mention is that I've generally been a bit low, which you may well have picked up on in my post 'Identity'. I've actually started seeing a clinical psychologist in the last few weeks. This will only be for a short period as these days the NHS only offer between six to ten sessions as, sadly, there's an increasing demand for the service, but I've found the three I've had so far helpful, if difficult. Actually, when I went to see my GP last week, the original purpose for the appointment was to ask if I could temporarily increase my antidepressant. It's not that I'm really depressed, it's just that I felt like I was beginning to walk a tight-rope and I wanted to stop before I fell. It was only as a passing, exhausted, thought that I asked about the asthma, which led me to be admitted. So yes, things have been tricky recently and the isolation in here caused a bit of a meltdown on Sunday. I was completely miserable, and then totally lost all composure when the nurse came in to tell me that from Monday I wouldn't be able to use the toilet (I would have to use the commode instead) because of my MRSA positive status and the toilet is communal. Most of the other cubicles round here are only used through the week, either for sleep studies or for transplant assessment, so it had been okay to use the communal toilet during the weekend, but when Monday came it would be different. It was the last straw for me on Sunday and I broke down. I'm so lucky to have the care of such wonderful staff here though, and to have known them for so many years, because their response wasn't one of bewilderment, but one of gentle concern, an opportunity to talk for a bit about all the things going on for me, and a big hug. As it turned out, the lovely nurse who had given me the news on Sunday felt so guilty for making me upset that on Monday she said that they'd swung it so that I could use the toilet and the other, more mobile (and transient) patients could use other toilets.
To someone on the outside it must seem like such a trivial thing - the use of a toilet - but believe me, commodes are demoralising, even when you're in a room of your own. It is a big deal to be able to use a normal loo. It is a big deal not to have to lie in bed and wait for someone to bring you a chair with a bedpan in the bottom, which may not arrive in time if you're suddenly desperate. Sometimes the logistics of using a commode aren't easy if you have a sudden release from constipation (I'll let your imagination do the work), or what, if has happened to me before, there's a hole in the bottom of the bedpan that's in the commode? No, it really is a horrible thing to have to use a commode and it really makes a big difference if you can use a proper toilet.
So Sunday was emotionally horrible, but Monday improved with a visit from my mum. She came down from Edinburgh for two hours to see me and she didn't tell me she was coming until she was sitting on the train. How lovely is that? It was fab to see her, and wonderful to have a Mum-hug. I had another visitor that day too, my friend O. She had been coming down to Newcastle anyway (again, from Edinburgh) because we had been meant to go to a concert together in the evening. O still went to the concert, I'm pleased to say, but she also came to the hospital to visit me. By the time she left to make her way straight to the concert venue I was feeling very much chirpier despite missing the gig.
I've moment of being low since then, but due to something very specific that I'll write about in another post very soon, but I've otherwise managed to remain fairly positive since Monday. I'm confident that tomorrow will be a positive day too since the thing that I'll write about in my next post has been dealt with (in as much as it can at this stage) and I'll be heading home. This might be crazy, but regardless of how tired I am when I get home tomorrow, in the evening I'll be heading to Flotsam for a quick burst of normality at the end of a stressful seven days.
Anyway, what happened is that I came to the ward in a more relaxed way to most previous admissions, ie, not in a life-threatening state, which was good, but also rather strange and I felt like something of a fraud. However, when the Registrar came to see me she looked rather horrified when I said that my daytime peak flow (PEF) was averaging at around 150. In fact, the look on her face made me think that perhaps I shouldn't admit that my night time peak flow was more like 90, so I kept that quiet, which really should have been enough to make me realise that I was far from fraudulent... Then she listened to my lungs. Again, afterwards she looked at me somewhat aghast and said, 'They sound very, very tight.' The did feel tight, but as it had been creeping up on me for so long I'd been getting used to it so I didn't feel as tight as perhaps I would have done if my lungs had suddenly clamped down like that. It's a known phenomenon of brittle asthmatics, and a rather dangerous one too, that sadly increases our risk of mortality. Thankfully, this time I didn't die and I didn't slip in to crisis.
The main plan of attack (no pun intended) was an infusion of aminophylline to try to get things a bit steadier. Aminophylline is my wonder drug, but it doesn't kick in straight away, which is often a worrying thing when I'm in crisis as time is something of which I don't necessarily have the luxury. This time it wasn't so much of an issue, except that I was generally exhausted and was desperate for a good night's sleep. The first night here wasn't to be a good night and I had the same difficulties as I'd been having at home, although perhaps not to quite the same extent. The second and third nights were slightly improved on the first, though still not great, but the fourth was easier, after which the aminophylline infusion rate was reduced.
I always get nervous at the time of aminophylline weaning because there have been so many times in the past when I've gone right back to square one after aminophylline reduction. Of course, at these times I'm only just beginning to regain a smidgen of strength after the exhausting fight for life I've had, so then thought of having to begin that fight all over again is both utterly draining and terrifying. I was still a little anxious about it this time, but not as much since things hadn't been so awful at the outset.
The infusion came down completely this morning and I've been okay. Because of the scenario above, there's no way I could go home on the same day as coming off the infusion, but seeing as I've been okay today back on the oral preparation of the drug I should be able to go home tomorrow. Excellent news!
It's been an odd admission for me, partly because I wasn't in such a crisis when I came in. This is good, but it's very unusual. Because I wasn't in a life-threatening state on admission I didn't have to be in a room right next to the nurses' station where they could keep an eye on me, so I've spent the past week in the last cubicle in the bit of corridor around the corner at the end of the ward. I've never liked being round here. It's lonely. It's right of the way and you never actually see anybody unless they come specifically to see you. Nobody passes the room on their way to anywhere else, and most of the time you barely know who's working on the ward except for the nurses immediately looking after you. It's not that I want to be in the middle of everything - I don't - it's that I do get very lonely having to spend a week almost entirely on my own, and because I have this long-standing MRSA positive status I'm not allowed out of the room.
The trouble with getting lonely is that it makes me think, and I usually end up getting in to a negative frame of mind and thinking about all the difficult things that are going on. Sometimes that's just the immediate situation and the recent asthma crisis, but when there are other things outside of that going on then they often pile in too. Then I get in to a bit of a state - miserable, tearful, depressed even. Unfortunately this is what happened on Sunday as there have been rather a lot of other things going on in recent times. Some of things I'm not really at liberty to talk about here, but one that I will mention is that I've generally been a bit low, which you may well have picked up on in my post 'Identity'. I've actually started seeing a clinical psychologist in the last few weeks. This will only be for a short period as these days the NHS only offer between six to ten sessions as, sadly, there's an increasing demand for the service, but I've found the three I've had so far helpful, if difficult. Actually, when I went to see my GP last week, the original purpose for the appointment was to ask if I could temporarily increase my antidepressant. It's not that I'm really depressed, it's just that I felt like I was beginning to walk a tight-rope and I wanted to stop before I fell. It was only as a passing, exhausted, thought that I asked about the asthma, which led me to be admitted. So yes, things have been tricky recently and the isolation in here caused a bit of a meltdown on Sunday. I was completely miserable, and then totally lost all composure when the nurse came in to tell me that from Monday I wouldn't be able to use the toilet (I would have to use the commode instead) because of my MRSA positive status and the toilet is communal. Most of the other cubicles round here are only used through the week, either for sleep studies or for transplant assessment, so it had been okay to use the communal toilet during the weekend, but when Monday came it would be different. It was the last straw for me on Sunday and I broke down. I'm so lucky to have the care of such wonderful staff here though, and to have known them for so many years, because their response wasn't one of bewilderment, but one of gentle concern, an opportunity to talk for a bit about all the things going on for me, and a big hug. As it turned out, the lovely nurse who had given me the news on Sunday felt so guilty for making me upset that on Monday she said that they'd swung it so that I could use the toilet and the other, more mobile (and transient) patients could use other toilets.
To someone on the outside it must seem like such a trivial thing - the use of a toilet - but believe me, commodes are demoralising, even when you're in a room of your own. It is a big deal to be able to use a normal loo. It is a big deal not to have to lie in bed and wait for someone to bring you a chair with a bedpan in the bottom, which may not arrive in time if you're suddenly desperate. Sometimes the logistics of using a commode aren't easy if you have a sudden release from constipation (I'll let your imagination do the work), or what, if has happened to me before, there's a hole in the bottom of the bedpan that's in the commode? No, it really is a horrible thing to have to use a commode and it really makes a big difference if you can use a proper toilet.
So Sunday was emotionally horrible, but Monday improved with a visit from my mum. She came down from Edinburgh for two hours to see me and she didn't tell me she was coming until she was sitting on the train. How lovely is that? It was fab to see her, and wonderful to have a Mum-hug. I had another visitor that day too, my friend O. She had been coming down to Newcastle anyway (again, from Edinburgh) because we had been meant to go to a concert together in the evening. O still went to the concert, I'm pleased to say, but she also came to the hospital to visit me. By the time she left to make her way straight to the concert venue I was feeling very much chirpier despite missing the gig.
I've moment of being low since then, but due to something very specific that I'll write about in another post very soon, but I've otherwise managed to remain fairly positive since Monday. I'm confident that tomorrow will be a positive day too since the thing that I'll write about in my next post has been dealt with (in as much as it can at this stage) and I'll be heading home. This might be crazy, but regardless of how tired I am when I get home tomorrow, in the evening I'll be heading to Flotsam for a quick burst of normality at the end of a stressful seven days.
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