Stint Living in the Dark

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.


I agree that laughing is a good medicine, @Pen2. I like listening to the comedy station on pandora a few days a week :) Thanks for reading
I had 3 months of it. Living with black plastic taped to the windows and a towel shoved under the door to keep out light, sound and smell. Like you said, thoughts required too much energy. I lay there listening to the beating of my heart and forcing my lungs to keep moving. It was a weird swirl of blackness that covered my brain, studded with sharp bursts of pain and energy whenever someone entered the room to care for me. I think drowning might be a similar experience. Sort of a suspension without time or place.
@MTpockets 3 months is such a long time. The black plastic and towel sound like a good idea. I didn't have warning before this happening, so I had no time to research how to cover up all the light. I alternated between a sleep mask, sunglasses plus hat, and long-sleeved shirt tied around my head. What you described about the pain of people coming in is exactly what I felt. It's such a disruption to the system that I felt upset at receiving help, which is crazy...Hope you never have to go through it again.

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