Fresh Mud

Living with FSH muscular dystrophy. Questions?

(There isn’t really a point to this post other than to add a little more background to my story.)

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Having reduced lung capacity (due to my curved spine and general slouch) puts me at risk when I have a chest infection or something more severe like pneumonia, and especially so with the current pandemic going on - I've had two letters and several text messages from the government telling me "you are at extreme risk" and "don't even go outside." At first I was concerned and a little worried but as time went on I got used to the new routine of doing even less than usual and not seeing some of my favourite people. Yesterday, however, things changed when we were informed that a resident in the neurological centre I live in has tested positive for COVID-19 - two residents were quarantined when they became ill a week or so ago but only one has the virus. Those of us with capacity (i.e. we can speak for ourselves) are being offered the test and the staff are continuing to wear PPE - they always wear gloves and aprons for things like personal care and assisting with meals but they have been wearing face masks around most of us, and other items such as face-shields when the need arises, for about three weeks.

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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!

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.

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, muscular dystrophy 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.