Naps and Sleep with M.E. [Discussion]

Brain fog: the everlasting screen of dust that accumulates in my frontal and occipital lobes, pausing any type of thought construction or concentration. I could stare at a wall for hours and it’s as if a transparent sheet lay over my eyes, limiting my ability to function cognitively in that moment that might last a few minutes or few hours, or maybe the rest of the day and into the next. It’s the thing that puts me in bed sometime between 1 and 6 pm on a daily basis; it allows me to rest and recover temporarily, and yet it keeps me from sleeping at night. Keeps me from functioning like a non-ME person. 

The time is currently 11:35 pm and I lay here in bed, in the darkness, wide awake, yet exhausted beyond description. 

I can’t blame anyone who has trouble understanding it. I, myself, have trouble understanding it, and yet I just have to manage somehow, in some way. 

Any tips? Comments? Similar feelings? I’d love to get a discussion started on this topic. I hope we can help each other out and possibly get some ideas of how to function with the brain fog-nap-no sleep cycle. If not, just the acknowledgment from another being of this struggle helps tremendously. 

So, let’s talk sleep! 

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