Yep, that's me in the middle…

#MEcfs #PwME #LongCovid #ChronicIllness #NEISvoid

? for other disabled folks (esp w ME/CFS): How do you estimate spoons available for the day? Or do you?

I need a better way than “Do things until PEM, then one thing less.” Timeboxing stuff pomodoro style kinda helps but doesn’t factor how much I must:

• move my arms
• sit up
• stand up
• walk
• climb stairs
• lift >5 lbs
• focus mentally
• do emotional work
• travel
• be in crowds
…or combinations of above

ANY resource links, tips, recommendations?

#MECFS @mecfs

I don't care what doctors say, I am NOT giving up on there being a cure - and treatments that are more than just activity diaries, which stress me out!

But I hate that this leaves me vulnerable to quackery. I know the supplement industry must do GREAT business out of #MECFS patients. Because our guts actually do work wrong. Argh. #NEISvoid

(People who believe I'd be happier if I just accepted my condition DNI.)