It’s incredible how much fear and sadness my body can hold all at one time. There’s something about being in the middle of what feels like the worst part of your disease that makes you realize you could give a flying, soaring, crashing, burning fuck about what anyone else could possibly think.
I’m working on this chapter in my book where I talk about that moment when you realize that doctors aren’t Gods. They don’t know everything. In fact, there is so much about the human body that we don’t know. And the further I wade out into the waters of investigation the less I know. It kind of feels like that–like the more I look the less I realize that anyone could know.
And I can only operate from: This is what I’m feeling right now. Right now I feel like I need help operating the machine. Right now I need to be watched when I stumble down the staircase. Right now I need to be reassured every hour on the hour that this can be figured out, that this moment will pass, that this free falling feeling has been here before and I’ve lived through it every time.
Boy, this has just been a scary past couple of days.
I was surprisingly weak when I got out of the hospital on Friday. My legs just feel like there’s no muscles in them anymore and I get winded walking just a few feet. It’s bizarre because I was doing pretty well in cardiac rehab on Monday and now I’m practically immobile. I even admitted that I think it’s time to get a wheelchair.
I’ve started getting spasms in my legs and tingling in my arms and feet. I feel like I’m just rapidly going downhill and it is terrifying.
I know there’s a lot of testing to be done still and I know it’s going to take a long time to do it all (setting up appointments at UM, finding the right specialists, getting down there for multiple appointments.) And since I switched all my meds at once I basically feel like I got hit by a truck. No idea which symptoms are a natural progression of the disease (and we’re all like: what disease? POTS? PIDD? EDS? Sjogren’s?) and which are side-effects.
I’m also just in a very foggy, weak place right now. I’m sleeping about every two hours or so and my fingers are even getting weak as I’m typing so this won’t be a particularly long post…
In fact this is about it. I’ve got to use whatever I’ve got left to transcribe an interview for work.
(But feel free to comment on how I can suspend this all encompassing panic attack I’m having while I grope my legs back into circulation.)
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