@MerlinJStar@weirder.earth i’ve had CFS/ME for over a decade, plus some genetic connective tissue hijinks

re: communication, offline i have one of those battery sign flip necklaces (this one, specifically, tho it looks like it’s not currently for sale: https://www.etsy.com/listing/214310611/communication-necklace-batteries-silver?show_sold_out_detail=1 ) — many fedi instances have similar sets of emoji for the same purpose. I’m feeling tired/I feel like shit/i need to rest/i need to tap out also all work

lots of people, including myself, have sensory issues when they’re tired. be cool about turning down/off background music, putting on closed captions, moving to a quieter space, etc. maybe a phone call is too loud but we can text chat, or i can’t look at a bright phone screen but i’m happy to lie in bed and mumble things on speaker. being flexible and chill about requests as they come up (we might not know in advance!) is really the best thing you can do

usually if i’m so tired i can’t even manage that, you just wont see me bc i’m definitely not making it out of the house and maybe not even out of bed. i put a lot of effort into managing my energy so those days happen unexpectedly less often than they used to (i’ve gotten better with practice, both in knowing my limits and in recognizing when i’ve passed them and need to start the “oh shit” protocols) and i can usually cancel plans/rearrange commitments before it really hits. if i do, be chill and trust i’m not blowing you off

after that point my priorities are making sure i get enough food and fluids to keep myself more or less functional and i’m not really thinking about people at all. if you’re the Friend With The Car, picking up cases of meal replacement shakes (ensure is usually the safest choice) or electrolyte drinks (my preference is Skratch Labs electrolyte powder, but not everyone wants to/can mix it themselves in which case caffeine free sports drinks like gatorade will work too) is a huuuuge help. Absolute worst thing is to wrangle heavy packages home when you’re feeling like shit

the big thing, *especially* for remote friends where you can’t necessarily lend a helping hand in person, is to just keep checking in in low pressure ways. don’t do anything that demands a response but regular “hey i saw this meme and thought of you” or “im hosting an online game night Friday if you wanna come” type texts mean a lot when you’re having a longer fatigue flare and struggling to maintain friendships as a result