I'm often asked- no, that's not true... I'm not often asked, but when I AM asked, one of the questions I get a lot is: "What's the worst part of this disease?"
Ask me again tomorrow, you'll get a different answer.
Right now, the worst part is that the pain and exhaustion makes it impossible to focus on anything. I can't read a book because while holding that book, my fingers alternate between painfully numb and just painful. Sitting too still causes me to stiffen up, so that eliminates most book-reading and movie-watching. And like right now, today's exhaustion... I fell asleep watching TV. And not only did I fall asleep from the fatigue, I was awakened every twenty minutes or so by the pain and the painful numbness.
So, that... the fact I can't concentrate on things because of the pain or fatigue. I used to read all the time. I read anything, everything. I'd rip through a book in a couple hours. I would read so much that I'd write when I wasn't reading. (nothing good- it was incredibly bad fiction) but I can't even do that anymore. Right now, as I type this, I'm shaking my leg to keep myself awake and every paragraph or so, I have to stop and shake out my hands because my fingers go to that painful numb place.
I'd go sit down and watch TV if I didn't think I'd fall asleep doing that. Falling asleep randomly in the daytime- ha ha hahaaaaa- completely screws up my nighttime sleep pattern. ISN'T THAT WONDERFUL!? That accidental nap I took today was two hours long. I woke up every so often, but that's not going to mean much when midnight rolls around and I'm staring at the stucco on the ceiling in my room. Yeah, our ceilings have stucco on them, with glitter. We didn't do that, it was like that when we moved in. I thought it was cool at first, but stucco is a son of a bitch to vacuum. And, it collects dust like... well, stucco.
Not like I'd vacuum the ceiling anyway... who can keep their arms up that long? I'd lose feeling in my hands and gain a lot of pain in my shoulders.
If I were at least unable to concentrate because I was distracted by something ("ooh, shiny!"), that'd be one thing. But when I'm in this much pain and this tired, even the shiny stuff doesn't hold my focus. Sitting in my computer chair takes effort. Typing these words (all of these words, not just THESE words) takes effort. If I sit down on the sofa and watch a movie, sleep will grab me and drag me down to the floor where I'll get covered in dogs and dog hair.
But, tomorrow, something else will suck more than this. Or, maybe I'll get lucky and NOTHING will suck. Well, except that it isn't July 6th tomorrow.