A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 23 January 2013


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, 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.

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.