Yeah that's a big frustration… I'm on disability, but people sometimes say, hey look you're getting better! Go get a job! But what they don't see is I can only do 3 small or 1 medium thing per day. My definition of small and medium probably being very conservative: a doctor's appointment is extra large, a 15 minute walk is medium, eating breakfast is small. And I need alternating days off where I can't do literally anything. And I'll randomly get put down and can't get out of bed for a month… No job would take me lol
But this hospital visit was mostly about random severe hyper-POTS flares. My blood pressure keeps hitting 200/170 from adrenaline dumps. Hopefully someone gives me another magic pill soon before I pop like a leaky balloon lol, the hospital just sent me home
2 Comments
Broadfern@lemmy.world · 5 pts · 39d
Can’t speak to the others but ME/CFS is a special type of hell when you get a small remission period so
Nobody believes you,
You’re expected to push past your limit and
It’s extra awful when it comes roaring back like a freight train to the face from stress or a virus or just because screw-you-that’s-why
I’m sorry you’re dealing with this OP hopefully you catch a break
Zarobi@aussie.zone · 4 pts · 39d
Yeah that's a big frustration… I'm on disability, but people sometimes say, hey look you're getting better! Go get a job! But what they don't see is I can only do 3 small or 1 medium thing per day. My definition of small and medium probably being very conservative: a doctor's appointment is extra large, a 15 minute walk is medium, eating breakfast is small. And I need alternating days off where I can't do literally anything. And I'll randomly get put down and can't get out of bed for a month… No job would take me lol
But this hospital visit was mostly about random severe hyper-POTS flares. My blood pressure keeps hitting 200/170 from adrenaline dumps. Hopefully someone gives me another magic pill soon before I pop like a leaky balloon lol, the hospital just sent me home