I am hurting all. over. my body.
I keep falling back asleep. I keep having atonic seizures. My wrists hurt with fuzzy pain like I can’t explain, and the gabapentin helps, but it knocks me on my butt, right back to bed.
I think I might have been awake 4 hours today.
I can’t think clearly. Like I have these moments where I’m a-ok and then these moments where I can’t think at all.
I finally had a desire to eat, at least.
I’m so worried about my future. I have no idea what I can do or what I ought to be able to do. Some days I’m a normal person. Some days, like today, I can barely move. It literally hurts to type.
Part of me just wants to die because it’s too hard to figure this out and I’m too tired and it would be easier to just disappear. This is, of course, lazy, and not a real desire but an escapist fantasy because I cannot handle what is happening to me.
I think it would be easier if my body could decide from day to day if I were able or disabled. But with MS and with Epilepsy, it’s a moment to moment thing. I never know if I’m ok to do anything. Sometimes, I feel fine. It’s great. But it never lasts more than a few hours. And I never know when it’s gonna happen.
I had such a wonderful time with Joyce and her band earlier this week and I’m sitting here being a whinypants because I can’t go anywhere to do fun things because I feel bad.
Right now, I could be at an Oscar party with friends. People I want to see.
But I can’t. Because I felt too bad to go out.
I’m tired of this shit.
I have to really get a handle on how to live my life well with this combination of disorders. I don’t want to live my life like Lazy Smurf. I don’t like sleeping through almost every day, and hurting like hell or being seriously drugged up/stoned when I am awake.
I know part of this has to be that I’m waiting for my bar results and am in the middle of the SSDI thing. I feel like I’m in some kind of weird whirlpool of “who the hell am I?” right now and I don’t even know where I belong.
Sometimes I don’t even know what the day is or how old I am. Sometimes when I come out of my seizures I don’t even know where I am.
Just existing is so hard sometimes. I don’t know how I’d do it without Adam.