My life has reached a weird but absurdly funny plateau that in my trusting moments I can enjoy a bit, but which mostly would seem awful looked at from outside.
My willmaking activities have run off the rails and I'm having to begin from scratch. I have found a nice notary but that's it so far.
My doctor letter is sitting in my mailbox this past week, but eventually I'll get it.
Yesterday I got stuck being unable to move on the bed with the lights out, which sucked. After a while I could get up, though. The weakness is X 100 when my core temperature is just a bit raised, which I'm countering with icy seltzer, ice fruit bars, ibuprofen, keeping the house icy cold, and medical mj. If I get cold I'm more spastic and can't move my arms, so the medical mj helps with that. It isn't that I don't feel cold - it's like slow torture having to be cold forever, but better cold than weak. It's also like a very touchy and difficult mechanism which is akin to defusing a bomb every day. It's very neat to defuse it, and the task is always absorbing, but it sucks when it goes awry.
SWMNBMIMB told me I am her role model for kindness, which I find crazy as I don't find myself particularly kind and I don't think I'm generous although I try.
I knew I had cancer a while ago as I suddenly saw the same red-rimmed eyes that my mum had when she had it. I look worse and worse these days, which is comical. Comical to me, anyway.
my neighbor who has MSA sometimes goes into total body lock-up and she can't move at all. she has music with a beat that somehow comes on and brings her out of it, or so she told me!
Even in your extreme situation you remain thoughtful and considerate. I would be cranky as hell.