so i’ve been tracking the timing on my crashes more carefully since last month, and i’m running into this weird wall when i try to explain what’s happening to people who don’t have ME/CFS or long COVID. i can do something on a saturday - walk to the library, spend twenty minutes in the stacks, make dinner standing up - and i feel fine. actually fine. and then sunday morning i wake up dizzy, brain fog so thick i can’t form sentences, and the next three days are shot.
when i try to tell someone “i’ll be bad tomorrow” or “don’t ask me to do anything sunday,” they look at me like i’m being pessimistic or making excuses. because i LOOKED fine on saturday. i wasn’t struggling. so how could i possibly know i’d crash?
that’s the thing about delayed PEM that i don’t think people without it really understand - the crash isn’t the same as the activity. it’s this separate event that arrives on its own timeline, sometimes 12-24 hours later. once you start tracking it, you can feel it coming. but how do you explain that to someone who thinks you should just be fine because you were fine yesterday?
does anyone else run into this? like, do you find it harder to convince someone you’re sick when the crash is delayed instead of immediate? is there a way to explain the timing that actually lands?