16 hours in bed, four of them wide awake, lots of lower back pain, and it is now time for what I call The Getting of the Up. It feels like a huge ask right now, to just make my way downstairs for coffee and a little something to eat. #mecfs #chronicillness #chronicpain #disability #non24 #insomnia

I'd like to go to the big #protest tomorrow, but I don't think I will. I have #non24, and I went to sleep today 3 hours before the protest tomorrow starts. I'd be exhausted. The person who was likely to give me a ride has to work now, so I'd have to negotiate transport with someone I don't know, which I really don't want to do when I'm very tired.

I slept for 19 blissful hours. Excessive? Better than the 4 from my last attempt. Even the fitbit admits I slept well. Wish I could do this every time. Only my back is complaining. #mecfs #chronicillness #chronicpain #disability #non24 #insomnia

Wow, I've done a lot while I've been awake. Finished a #JavaScript project on #freeCodeCamp, did the drills for lesson 11 of my #Braille #proofreading course, finished and submitted the lesson 11 exercises, talked to quite a few people on here and created a group for #Christians, checked #email, played a little of each of the #incrementalGames I have going right now, and completed another short #JS project on freeCodeCamp. I'm wiped out and think I'm going to get ready to go to bed. It's after 1:00 PM here but I have no #sleep schedule because of multiple #sleepDisorders, so going to bed in the middle of the day isn't unusual for me.
#learningToCode #learningToProgram #coding #programming #BrailleProofreading #gaming #blind #chronicIllness #NEISvoid #non24HourSleepWakeDisorder #non24 #sleepApnea #disability

Trying to help a friend with non-24 figure out a financial plan to achieve a sustainable and reasonably comfortable life. SSI sucks. It's structured in a fun way that discourages you from trying to make money. But through my research, I came across IDAs and AFI... Only to find out that AFI has not been funded since 2016, since Trump's "skinny budget" killed it. Thanks, fucker.
For those of you unaware of what non-24 is, please read up. It is not talked about enough and most people think it's fake/don't believe it's as debilitating as it is when they first hear about it. https://en.wikipedia.org/wiki/Non-24-hour_sleep%E2%80%93wake_disorder #non24 #disability

How is it that I can't sleep because I'm roasting hot, even with the AC and the fan, but now that I've given up trying, I'm freezing? #mecfs #chronicillness #chronicpain #disability #non24 #insomnia

Wheel of circadian turn turn turn, tell us the daylight that we should burn. #non24 #animaniacs