so, I was one of these people. for me, it is simply impossible to fall asleep at an earlier time than my circadian rhythm dictates. no matter how tired I am, I lie in bed and cannot sleep. (there are a couple of other factors to this too; but circadian rhythm is the biggest one.)

so I muddled through school on 3-4 hours of sleep, the occasional nap, and slept well through the day on weekends and during holidays. it sorta worked, but in school I was always sleep deprived.

sleep deprivation means impaired cognitive performance. you just can't THINK as well. you can't concentrate. you make lots of careless mistakes. you have no idea what you just read. ADHD adds to this, but it is SO MUCH WORSE on too little sleep.

it's also just plain miserable. I felt, back then, that i would crush my body living like this. I couldn't really put it into words why I thought it, but I estimated that I would make it through uni and then not one step further.

sleep deprivation is torture.

you can feel your body breaking down bit by bit. you try to think and you can FEEL your thoughts getting stuck and disintegrating. all you want to do is get some blessed shut-eye. everything weighs you down. every little annoyance just crushes your nerves.

at the same time, you're not allowed to complain. it's your fault, after all.

this is not a way to live.

I knew this then, but I could always catch up on sleep debt. I had no idea how much worse it could get

Uni was comparatively easy.

I simply... didn't go.

I invested a few days into studying before each exam and that was that. the lectures that you were forced to attend were few and far between. it was fine.

I still crashed a few times. I had to work student jobs to stay alive, and I had to get up early for them. at one point I dropped all of my jobs and once, crawled in bed and just slept for a few weeks.

I already felt that I was breaking myself

then, ultimately, I made it to my bachelor's thesis and got a job in some company and wrote my thesis and once that was done I transitioned into a 40-hour work week.

and i crumbled.

everyone, including doctors, kept telling me that it was fine. the sleep will even itself out. you'll get used to it. once your body is lacking sleep, you will automatically sleep earlier.

can't sleep? just go to bed earlier.

tired? take some iron pills

no, don't take any naps, it will ruin your sleep pattern

it got so bad that I got seriously suicidal. because I just wanted to fucking sleep. there was nothing else going on in my life that was stressing me. my entire life was only my job, and my sleep deprivation. there was nothing else.

but everyone kept telling me it's normal! but after a few months your body gets used to it!

no, it fucking doesn't. if your body has a hard, immovable circadian rhythm, it will NOT MOVE.

I didn't know this then. I kept going.

I started developing all kinds of funny symptoms. weird muscle spasms where some muscles in my arm would lock, moving my fingers or wrist to a weird position, and I couldn't release them.

migraines.

constant, unrelenting dizziness.

shakiness, muscle weakness, balance and coordination problems, concentration problems like I never knew them.

I abandoned all hopes of continuing to a master's, I abandoned all hobbies

and after a year of this, finally, mercifully, my boss caught me in the HR department and yelled at me in front of everyone for taking too many sick days. (germany has infinite sick days. you get whatever a doctor signs off on.)

I got pissed and yelled back that I was gonna go home and never come back.

I went home. the next work day, I saw a doctor, got a sick note, delivered it to the company, and went fucking back to bed.

I slept for several weeks. kept fetching sick notes. "depression".

I anticipated my improval. i had always gotten better after sleeping for a while. I would go back to normal.

but my symptoms didn't get better. brain fog, muscle weakness, shaking, migraines.

other symptoms kept popping up. itching all over, diarrhea, a sensation like lightning flashing through my nerves, and pain. so much pain.

I was making plans for my eventual improval. I could maybe do tutoring again. and study some more.

only I didn't improve.

my therapist kept pressuring me to do vocational rehabilitation. I had a strong sense that this would make me worse, because they would force me to do activities and the only thing that improved my symptoms at all was rest.

he kept telling me to go anyway, to "show them" that I would get worse.

eventually, I chickened out and didn't go. (I also ditched the therapist because of his constant boundary-violating ableism.)

I'm glad that I didn't go.

because now I know that pushing yourself, or getting pushed in rehabilitation programs, makes #MECFS much worse, often permanently.

I'm on the mild end of the spectrum. with strict pacing, I can still do most of my housework, I can do my groceries, I can read, I can watch TV shows, I can learn a new language...

#pwme with a severe case often can only lie in a dark room, doing nothing, because every little thing is too much and causes a crash.

@skye Oh dear. I ran into your thread on my federated timeline... I didn't know it could get that bad. I'm sorry that this had to happen to you.

How long were you at your office job, if I may ask?

I was lucky earlier on in my life, because our schools were in changing shifts, one week we had school in the morning and one in the afternoon, so I could catch up on sleep. I, like you, kept skipping my early morning classes in university. I went on to have a PhD, which again had flexible hours. Then when I got a 9-5 job I started getting physical symptoms, though they were very mild compared to yours. I stopped two years later and moved to a WFH job with semi-flexible hours, and since then I'm OK.

Lately I discovered the combination of light therapy in the morning, with a full spectrum light in my office if I can't go for a walk, and melatonin in the evenings. I still don't wake up early enough for a 9-5 job, but I'm not a complete zombie when I occasionally need to wake up early, plus my working hours have a bigger overlap with my colleagues'.

@skye Oh dear, factories must be even harder (and also possibly start earlier?). I was able to hide my sleepiness behind my screen, look at my code and pretend to work, and power through my work during the afternoon when everyone else was in their post-lunch productivity valley.

And yes, I completely understand when you say that everyone else keeps repeating "just sleep earlier". I've been hearing that my whole life as well. My brother can go to sleep at 22:00 if he needs to wake up early. That simply can't happen for me.

I was lucky in several forms. First of all, my job/studies, then later on my hobby-turned-job (open source programming) being one of the first fields worldwide that adopted WFH as a standard. Also my mother was always understanding, even though she, like me, didn't know exactly what my issue was, she could understand that this is just how my body works.

@vivia yeah I had to be there at 7... I actually increased productivity of the machine I was responsible for by +150% after I decided that my colleagues were to come at 6 and I would come at 9, so we could run 2-3 processes a day instead of 1, but of course I got shit for that as well :))))

I wish there was more flexibility in jobs. and not just office jobs! I literally proved with my job what an immense benefit these differences can be, but even that was fought against

@skye I know! I see so many office jobs where productivity is counted as "butts in seats" with inflexible times, doesn't matter when you're feeling more productive, doesn't matter what the actual output is. Fortunately COVID changed some of that to some extent.

It's very sad that you were denied an environment where both your output and you personally would thrive.

I've also had a job with completely flexible hours, "whenever you want, as long as you get your weekly hours done and your colleagues can find you for questions". My husband's company works like that and some of his colleagues have completely unconventional hours that keep changing every day, but they're happy and productive.

With that setup, my problem was that I'd easily think "I can take a break now" and every Friday evening I'd end up owing hours. In that regard I'm better off being semi-flexible now, it's easier to put me into the mindset of "currently working".

@vivia yeah, I'm probably similar, I always needed some guideline to actually get to a job, but if I could show up at 9-10 I was generally fine. it was still a tad too early for me but manageable. if I had known then what I know now I would have found something similar for myself.

but I BELIEVED what everyone including the doctors told me! if it would change my body to conform to the social norm, a few months of suffering would be worth it? I didn't know that this would happen instead.