I'm one of these medical mystery types. Described as "a complicated case" in case I hadn't noticed over the past three and a half years, I think we're finally getting somewhere. This is my diary of living with the illness and disabilities, without knowing what I'm fighting.

Saturday 19 March 2011

My bed

Sorry it's been a while again, but as I've said, I don't know who I'm apologising to since nobody actually reads this...
The subject of this post is so, because I seem to have spent a lot of time in my bed recently, due to bad sleeping and very bad pain. Since I can't sleep very well or very easily, once I do sleep I get left alone (at the weekends) until 12 or some such time. However, when I have to get up at 7 and can't sleep until 4, you can see how that doesn't work out. So sometimes, I end up missing a day of school because I'm physically too tired to be able to get up and leave the bed, let alone the house.
Another reason I'm here often is the pain. I've started a new type of physio in the "gym" which isn't going well for me.
A) I believe they think I have "backache" (which is an extremely over simplified and patronising term for what is actually chronic severe pain) despite the fact that scans have shown a degeneration of discs and movement of my vertebrae. As well as the fibromyalgia making it worse, and probably a pain syndrome on top.
B) They don't seem to find anything concerning or odd with the fact that this is my 8th course of physiotherapy for my back, none of them have worked, and I've been doing this course for over 6 weeks with no improvement.
C) It's causing me severe pain and other worrying symptoms (pins and needles, dizziness) during and immediately after the class, and for the next 5/6 days after it. And finally,
D) My actual physio is away. So I can't see him to make this stop and to get those crutches until the end of March/April.

The reason I'm in bed now is reason C. It is now Saturday night, 4am (technically Sunday) and I'm still suffering major effects from this class on Tuesday. I'm having to be very careful because any movement and breath causes pain. I'm trying to decide if this class is worth it.. I was told to try it for a few weeks, and I've done 5 weeks I think, so is that "a few"? The problem is if I stop going I'm accused of not wanting to get better and an attitude problem- but how far does it have to go before it gets to the point where I decide that my quality of life is better without the physio. Does it have to get to the point where I'm in this pain constantly?
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