I'd guess many here have experienced living in the dark for longer than I have. I just came out of a week of it, precipitated by migraines and sensitivity to stimulation (light, sound, conversation).
I always wondered, when watching ME documentaries, what severe patients think about while lying there. I think they must have different thoughts during week 1 than they would during year 5.
For me, disjointed worries went through my head. Trying to change my thoughts or use my imagination would make things worse. I wasn't able to distract myself with music, tv, or reading. I tried reading with sunglasses once (still too bright), and the words just looked like a pattern more than anything intelligible.
My favorite part of each day was meal time, which was a break from the monotony and feeling unwell. I can't imagine how it is for those who can't eat without dire consequences. Perhaps being able to feel monotony means it wasn't so bad, because it's hard to think of anything but feeling horrible when really sick.
Not having a night and day was weird and affected my circadian rhythm, which was off in any case.
I'm still bed bound, but I feel GREAT compared to a day ago! It makes me laugh a bit that my standards for feeling great are so low. For ME/CFS, they aren't low
I feel like I've jinxed myself by saying I feel so much better. Knock on wood. I need to remember to fight the temptation of getting back to doing as much/little as I was before.
Stint Living in the Dark
Blog entry posted by hedgehog, Aug 29, 2017.