Fresh Mud

Living with FSH muscular dystrophy.

Page 2 of 2.

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.

And I'm still suffering from the exertion during the sit/balance/posture workout yesterday!

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!

I was scared and felt that that I was going to fall flat on my face on the hard floor several times but I knew that these guys knew what they were doing and so I put my trust in them and (hopefully) didn’t show how nervous I was. They kept apologising for manhandling me and I kept telling them that that was the last thing they needed to do.

The outcome was that I need some kind of support or cushion on my left side as I have a strong tendency to lean against the armrest which gets uncomfortable after a while; I left the gym with a pillow shoved down my side and slightly behind my back with the promise that we would do future sessions and get a proper cushion made.

When I got back to my room I realised that I felt really, really exhausted, more so than I have in a long time. Even though I was exhausted and aching a lot from the effort, I did feel a small sense of achievement.

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.

When I was diagnosed with muscular dystrophy in 1985, just before my 12th birthday, "they" didn't know much about the condition and hedged their bets by telling us: "Muscle deterioration, in a wheelchair by his late teens, dead before he's 21." (It was almost that blunt.) I'm 47 now so, obviously, they were wrong but I don't blame them. Even though at first we all thought it was going to be like that, I don't think I ever believed I was going to die; I mean, who does really? Until it happens most of us have no real concept of it. I had pneumonia in 2015, passed out from lack of oxygen and stopped breathing (I can't breathe properly when asleep due to my weakness) and I was lucky enough that it happened literally as the paramedics arrived at my door carrying a Bi-PAP machine; even after being that closer it didn't change my acceptance (even though it really should have!).

So, I had to say to AJ that, no, I don't think I have really accepted the inevitable, but it's not like I'm denying it will happen; I'm consciously aware that I'm at more risk than most but then, other than being sensible and acting on any respiratory related symptoms as soon as possible and being prepared (hence the icon on my phone screen), what else can I do?

I was born with FSH muscular dystrophy but didn't inherit it from either of my parents; this is what is known scientifically as a "novel mutation" and unscientifically as "bad fucking luck."

I currently live in a neurological centre and receive 24 hour care from many different carers, nurses, and therapists, most of whom are great people.

I'm hoping to use this as a place to write down my thoughts, experiences, and occasional bitching about living my life.

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