i’ve been thinking a lot lately about how much of this me/cfs experience is just invisible to everyone else. it’s been almost a year since the long covid really settled in, and even with family and friends who try, it feels like i’m living in a different reality sometimes. i can look totally fine after i overdo it. like last monday, i had to push through a long stretch of admin tasks at work, plus the grocery store run i’d put off.
heart rate was ticking up over 110 bpm for a good chunk of the afternoon. but tuesday? completely fine. wednesday too.
i even thought, maybe i dodged it this time, started making plans for thursday. then thursday evening hits, like a switch. brain fog so thick i can’t even remember what i walked into the kitchen for. the exhaustion is just there, a deep hum that won’t go away.
that 3-4 day lag between the trigger and the full-on crash is so consistent for me, but it makes it impossible for anyone else to connect the dots. they see me look okay, then suddenly i’m wiped. they don’t see the internal calculus, the tracking, the constant checking of my heart rate, trying to predict when the shoe will drop. the cognitive stuff is the worst for this, bc it’s not like i came home from a marathon.
it was just insurance codes and spreadsheets and a manager meeting that drained me more than a trip to the mailbox used to. does anyone else feel this? like you’re carrying around this whole other layer of information that no one else can see or even really process, and that’s the biggest part of the daily grind?