Fresh Mud

Living with FSH muscular dystrophy. Questions?
Entries are listed latest first.

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I get tired easily due to my lack of muscle and when I don't sleep very well, like last night, I'm tired and achy all day. Aside from my back and hips hassling me more than usual, my upper arms are particularly sore and I'm only really comfortable when I fold them; this has the occasional effect of making some people think that I'm sulking, as I'm sat there being assisted with my lunch, for example, arms folded like some petulant child!

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I take painkillers daily: two co-codamol (codeine and paracetamol) every four hours, four times a day. Most days they ease the aches in my back and hips and some days they don't quite manage it, and some days they go the extra mile and make me feel floaty-light; today is a floaty-light day.

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Today I had the cushion put back in once I'd been hoisted into my wheelchair and it was fine for a while but eventually, after about two hours, it was causing my right leg to ache somehow; remember that the cushion is on my left-side. I asked someone to remove it and the ache eased a few minutes later.

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This afternoon I had a session in the gym with AE, SM and AN; AE wanted to see how well I could balance and support myself sitting on the edge of a plinth (which is what they call the padded table in the gym). SM was sat behind me on a huge ball holding my shoulders and stopping me from falling forward whilst AE was in front trying to stop me from leaning to my left; AN was also in front supporting me as I really have no strength!

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Chatting to AJ as he was helping me with breakfast, he noticed an icon on my phone home screen that says "If I've Died" and he asked what it was; I explained that it's a text file containing all my wishes and related details needed should I die (my eldest brother has access to my phone). He went on to ask, apologising if he was being nosey beforehand, if I had accepted the possibility of it; I said that I think I have, with a bit more explanation.

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FSH, or facioscapulohumeral, has affected almost my entire life, and it will no doubt cause my death, at least indirectly. And on that cheery note: welcome to my site.