AaronEvery time I think I'm getting better, suddenly I realize all over again that I feel like complete garbage.
I thought I was just sleepy this morning. Nope. Still feel like death, hours later.
I'm starting to suspect that maybe other people don't have this problem of bad days masquerading as good ones, because maybe other people don't feel like they're diseased, deathly ill, and recently run over by a truck for the first few hours every single morning of their lives, ill or not.
Your Autistic Life 
@hosford42 I hate to compare.
I'm not totally sure what you mean by "bad days masquerading as good ones."
I've had days recently that started okay, but then everything fell apart. Depending on what day it was, I might have gotten high or started drinking kava early.
@yourautisticlife Basically, every single day starts out like a horror show for me. But some of them then proceed to evolve into something better over the next few hours. Sometimes I think it's going to be a regular day, but that misery I feel upon waking up sticks with me the whole day instead.
@yourautisticlife I guess what I'm trying to say is, maybe it's not a typical experience to feel that bad in the morning, and that's why I get fooled so often into thinking my day will go well only to have a day that is truly, profoundly wretched.
Kirsty's Old Account@hosford42
Many can relate… it’s always a question of how many hours it will take before Upright becomes a doable thing.. some days its several, some days it is “ask again tomorrow”.
#ChronicPain #MEcfs #fibromyalgia #ChronicIllness sufferers live this reality, day in, week out. They don’t live in a situation where this isn’t “their normal” routine.
Many can relate… it’s always a question of how many hours it will take before Upright becomes a doable thing.. some days its several, some days it is “ask again tomorrow”.
#ChronicPain #MEcfs #fibromyalgia #ChronicIllness sufferers live this reality, day in, week out. They don’t live in a situation where this isn’t “their normal” routine.
@adminkirsty Do you think I might have something like that going on with me? Because your description is dead on for my experience.
Ahimsa@hosford42 @adminkirsty If there's a delayed reaction after exertion (you don't feel bad immediately but feel bad later, anywhere from 12 hours to 48 hours, maybe even longer) then that could be PEM/PESE (Post-Exertional Malaise, aka Post-Exertional Symptom Exacerbation).
PEM can be triggered by either mental or physical exertion.
This PDF from the CDC might be helpful:
https://www.cdc.gov/me-cfs/pdfs/interagency/What-are-MECFS-Symptoms_508.pdf
@ahimsa_pdx @adminkirsty Is the delay consistent for a given person?
@hosford42 I'm not sure whether anyone knows?
I've had ME/CFS since 1990. For me PEM delay ranges from 24 to 36 hours. But it changes somewhat and depends on other factors.
I also get symptoms that are immediate, not delayed. But the most difficult thing to figure out in the beginning was that delay between exertion and symptoms, especially during periods when I was able to work (too sick now).
Orthostatic intolerance (standing still causes symptoms) was another confusing thing.
This Pacing and Management Guide for ME/CFS (it also applies to many folks with Long Covid) might help. It has more info about PEM:
https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf
I'm not always very articulate when trying to describe symptoms!
Omega_Scribet (has moved)