Monday, 1 December 2014

Give it a name, please

Self-assesment:

Head falling forward for the last 8 years or so, making it feel as though someone is constantly pushing it from behind. Difficult to counteract the downward momentum that feels as though my chin will end up on my chest. This accompanied by a distinct curvature of the spine just below the neck, which is accentuated by bony growth of one or two vertebrae. When I am tired, I tend to use my eyes alone to look up.

A swollen right knee which has never properly gone down for the 15 years or so that it first flared up, resulting in it being next to impossible to squat without pain, meaning that most of the strength in both legs has greatly diminished.

A clicking and painful right hip joint which was mistaken for ordinary arthritis until it magically disappeared, meaning that it was not a deterioration of the ball-joint as two of my friends have experienced and cured through artificial hips.

Hard lumps developing on the tendons of both hands and fingers which can be painful under pressure. These have been around for many years now, and are not getting any smaller.

A spur of bone-growth on the middle joint of my little finger which forms a pronounced lump. This was exacerbated  - but not necessarily caused - by my left hand constantly hitting the stone I was carving over the last 35 years.

A reluctance to crouch down at low supermarket shelves because of the discomfort this causes me, and a regular feeling of fatigue, even if I have not been working at all. A tightening of the rib cage. The inability to get up from lying on the floor without turning over and using my arms to push up.

A feeling that all work-surfaces are too low for me, causing a  draining, dull pain when I am doing the washing-up, followed by the need to straighten myself up every few seconds and take deep breaths.

My apparent short temper - according to my Step Daughter - is getting shorter, and I believe this is because I have not been out of pain to some degree for many years, especially when I am cooking for her. If I know this is the reason, I can assure her that I will do my best to counteract it, so she can come round for a drink at Christmas after all.

I will pay a visit to my friend who is a senior physiotherapist at the Bath Mineral Water Hospital, just so she can give it a name, and I am 99% sure that name is Ankylosing Spondylitis.

It is a genetic, incurable and progressive, auto-immune condition, but at least I will have a verbal excuse for not being able to climb onto a four foot wall (as I had to the other day) without assistance, and nobody will be able to blame laziness for my reluctance to carry heavy weights around.

37 comments:

  1. Yes, I agree with you Tom - you do need a name - then at least you can face up to and justify it. I had a sister in law with the condition many years ago. I don't believe in pussyfooting around and pretending conditions don't exist - I had a fit and everyone pussyfooted and suggested we call it a seizure. Why, for goodness sake. I take a drug for epilepsy and I need to face up to the fact that I take the drug for a purpose. Pretending it is something else does no-one any good. Hope you get a diagnosis.

    ReplyDelete
    Replies
    1. I have been thinking it was just the onset of old age that everyone goes through, and I would be making a fuss if I called it anything else. I now know better and that - funnily enough - makes me feel a lot better.

      I actually think now that if this is all it is, then I have got off very lightly.

      Delete
  2. If it is.. Make sure you don't get rear ended in the car....
    We used to get loads of paralysed patients with AS
    after accidents
    Hey ho

    ReplyDelete
    Replies
    1. The same has occurred to me. I am thinking of fitting an extra buffer to my headrest.

      Delete
  3. I hope very much that you don't have Bechterew's disease, but "only" deterioration by heavy hard work, but even then the list of your pains makes one want to hug you protectively! The only question I have: why not raise the shelves of the kitchen unit (we did it everywhere, as husband is 1,98m - and son even 2,02m. The new settee is 3cm higher than usual ones - now even my long legs can just reach the ground, visitors dangle).
    I hope you are in good hands for treating those pains - chronic pain is awful, nags away silently but persistently the joy of living, and eats up one's energy. I don't want to appear silly in front of your doctors and physiotherapists (who would have recommended Yoga and Chi Gong anyway, I think), but I thought 'Eutonie' very helpful (though highly esoteric - but: what helps is right). My very best wishes for you, Tom! (And I do not thrive on diseases - I normally flee as soon as a person starts to recount...)

    ReplyDelete
    Replies
    1. Thanks, Britta. If I raised the height of everything here, all the Hobbits would be stranded.

      Delete
  4. Don't shoot me down in flames Tom.
    For I think your suspicions are correct and you might look at Ayurvedic treatment for Ankylosing Spondylitis http://www.ayurvedayogashram.com/ankylosing-spondylitis.asp

    ReplyDelete
    Replies
    1. I won't! Thank you, Heron, and I will look it up - particularly as exercise is always recommended.

      Delete
  5. I'd plump for 'ageing'. I have a few of your ailments too. The bastards now sell plaster in 40 kilo bags..... why couldn't they stick to 35?

    ReplyDelete
    Replies
    1. That's the spirit, Cro. Well said about the 35kg bags.

      Delete
    2. I have been moaning for years that they do not trust beefy people like me to be able to lift 112 pound bags safely any longer, making the 56 pound ones the legal maximum for H and S reasons. I used to carry two 2cwt ones at a time. I used to have dark hair as well...

      Delete
  6. My belief is that AS is hereditary, though some docs won't agree. My father, his brother and their mother and myself have diagnosed AS. worth knowing if another family member is having some difficulties. It is sometimes called "bamboo spine" the major precaution I take is to avoid contact sports and sudden jolts - see John Gray's comment -as the cushions between the spine are no longer "cushioning" My dad was very disabled by it and had a severely bent spine and limited chest expansion, while it has been more of an inconvenience and pain in the ass (literally and figuratively) to me. Mind you at 68 I do little contact sport or horse riding!
    Gill

    ReplyDelete
    Replies
    1. Now that Jumble Sales are finished, I no longer participate in contact sports.

      Delete
  7. You are always angry with me to

    ReplyDelete
    Replies
    1. It doesn't matter. I am glad you had your best day ever, work wise, it is very memorable for you and I won't spoil it.

      Delete
    2. I have put the violin back in the cupboard.

      Delete
  8. Oh Tom, poor you ….. chronic pain can make you feel so tired and exhausted …. no wonder you pop into The Bell on the way home from work !! Can you take anything for the pain ? I'll offer a hug like Britta but that might make it worse !!! Hope that you find some respite soon. XXXX

    ReplyDelete
  9. I hope they can give it a name and, better yet, recommend treatment to make you feel better. Hope you get some relief soon. Chronic pain can make anyone short tempered!

    ReplyDelete
    Replies
    1. It isn't what I would call chronic, just persistent - over a period of years.

      Delete
  10. It is good you are about to sort it out; chronic pain and debilitation sucks. I've said it before. Listen to John, too. Until I took time to get cadaver bone replacements in my neck the surgeon requested I wear a neck brace in the car, hoping to avoid snapping bones in an auto accident. And, don't forget to keep doing exactly as you please until instructed otherwise. For the record, I couldn't climb a four foot wall either, but one foot probably would be OK.

    ReplyDelete
    Replies
    1. That's easy for you to say, Joanna - you are only four feet tall yourself, aren't you?

      Delete
  11. I'm familiar with the condition, as I was once diagnosed with it and sent for some very expensive tests to confirm that diagnosis. Instead they disconfirmed it. My symptoms were away over the course of a few months and I informed the AS specialist that he was a fool. I hope you don't have it either.

    ReplyDelete
    Replies
    1. Really? My current status is 'unconfirmed', rather than 'disconfirmed', but - like I said - if it is a positive, I will be almost what you could call happy.

      Today my patron informed me (via an agent) that my request for a paid apprentice, a fully equipped workshop and a retainer were all granted. So long as I can drive and talk, my future is secured, God willing. I have never had a better day - work wise - in my life.

      Delete
    2. That's tremendous. I'm ever so pleased for you. Here, let me get you a glass of wine. It's good to see you being acknowledged.

      Delete
    3. Glug, glug - splutter - glug...

      Delete
    4. This is excellent! A very good day.

      Delete
    5. At the end of the day as well.

      Delete
    6. I haven't forgotten your stone, by the way...

      Delete
  12. Constant pain makes all of us tetchy. Sorry you're having a rough time, Tom. I liked Weaver's comment. I think she's talking a lot of sense.

    ReplyDelete
  13. Yes, it just wears a person out to have all these things pile up that you can't shake off. When you mentioned Ankylosing Spondilitis I thought that you were kidding. I couldn't imagine that there is such a thing with this name.

    I hope that you can find some relief after the visit to the physiotherapist. If she recommends some gentle stretching, is it to much to ask for a picture of you in a leotard?

    Seriously, though, I hope that you can catch a breather.

    ReplyDelete
  14. I do hope you can have a name for what ails you, and a plan going forward that can help.

    When I've had times of physical pain, I have also been short-tempered, more than usual.

    I don't think I've ever been able to climb a four-foot wall, but then again, i'm only a tad over a foot taller than that.

    ReplyDelete
    Replies
    1. I could still throw you over a four-foot wall if you want, Megan.

      Delete