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I'm thinking about chronic illness and wondering if others can relate. And I'm thinking this might sound strange to able bodied people, but it's something I wish I had more help with. My brain fog won't let me phrase it well, but I still want to write it down.
i had a long flare there, something mysterious, left me w brain fog and migraines and fatigue for a few weeks. I'm sitting up today clearheaded enough to do some work and I'm struck again by how it's scarier to be recovering than really ill sometimes. Being really ill is horrible but it's simple and straight forward. When you feel better you're hit fully with what you missed out on and how far behind you are and trying to prioritize which part of life to pick back up with the little strength you have. N it could just be a fluke - maybe I'll be back in bed tomorrow - so if I pick something to do that can't be finished and important TODAY, if I can't pick the one single thing that's worth doing this one good day that mightn't come again, I will feel like such a fool! I'm trying to be excited to feel better, and I am excited, but there's something so simple about the acute phase... "I just have to endure" is so simple. "What if I never get better" is a simple fear. When I'm properly sick I can't even torment myself with what I would do if I felt better, because I'm too tired. "oh, I could see my friends, I could work..." but I'm too tired to want that. "If I was well again"... I can't even picture it when I'm really sick, so my life doesn't look so bad because I can't compare it. When your strength comes back, your wants come back beyond the immediate and it's overwhelming. The fears are more complicated. I have the energy to compare again, and it really sinks in how much time I've lost to this. It's like the difference between being a child and being a grown up. I don't miss being a child, I don't want to go back to that ever, but my life felt simpler then and I could kid myself (pun intended) about so many things. It's not nice that recovery is such an anxious grieving time. Especially since I never know how long it will last, I feel like I don't have the time or energy to spare feeling frightened and sorry! I should be grateful to feel better, i should be excited and grab the opportunity. But it is a grieving time and I can't help it.
It’s annoying how you can be doing and feeling great all day, and feel super inspired and confident in a skill. Like I’m actually dressed, I have my blinds and curtains actually open for once to light up the place. Like wow. And then it only takes one comment, just one, and it all comes crashing down.
It’s wasn’t even that negative, but just like that, it feels like everything just shuts back down, I don’t feel like creating anything, the blinds and curtains get closed, and now all I wanna do is lie back down in my pajamas. Damn, that feels pathetic…
And now I’m just ranting…anywaysssssss aside from all that I’ve been pretty productive today so that’s a win. Go me!!! I can actually do shit, so fuck off brain, I’m writing my feelings out, so fuck yeah. I’m airing those negative feelings out!!!
This made me feel more positive than I thought it would, still don’t feel like doing shit anymore, but at least I don’t feel as bad as before and that’s a win in my book, so thank you rambling.