Fresh Mud

Living with FSH muscular dystrophy.

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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.

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?