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.

I now know that I don't have ONLY M.E. I also have MCAS, which I have to self manage because there's nobody who can diagnose or treat it in this fucking country.

it's fine though. daily antihistamines and avoiding the worst triggers removes most of the really shitty allergy symptoms.

I also have EDS.

both the EDS and the MCAS probably contributed to me developing ME like this.

but, crucially, I didn't know that I had them. i had no idea.

I don't have a diagnosis for ME either. because it comes with a lot of stigma. many doctors, despite ample evidence to the contrary, still believe it's psychological, and will actually dispute disability claims because they think that psychological = not real.

many rehabilitation programs use "graded exercise", programs designed to push and increase your daily activity.

this, of course, makes things worse. you crash.

and you can never be sure that you'll bounce back. sometimes you don't.

so, I am stuck like this. faithfully staying within my limitations. 10, 15 minutes of housework, then lie down until the muscle weakness improves.

read one page of a book in a new language, then lie down until the nausea passes.

do one busy day with 2 doctor visits, then stay in bed for 3 days, unable to sleep, cook, wash myself, take out the trash.

this is just my life now.

I had to give up everything I ever loved, every dream i ever had, and settle on a life of, at best, small joys

so yes.

sleeping when your body needs to sleep may cost you your education, your job, your career, and more.

but what will NOT sleeping cost you?

now I don't want to end this on a depressing note. there is no treatment for ME, but I could DIY some treatment for my accompanying illnesses, which in turn alleviates ME symptoms.

ME is very sensitive towards the many big and little stresses of body and mind. by removing stressors you can often improve your activity tolerance.

in 2017, I was an almost full-time wheelchair user. i could barely get from bed to toilet without the chair. I was crawling up the stairs on my bum.

now, I have an ebike. I regularly do 10-20 km on the bike. I do my grocery shopping. I no longer need to rely on household aids to take out my trash and clean my toilet.

but with medication - lots and lots of trial and error and begging doctors and devising ways to convince them, also trying many more or less questionable supplements based on informed guesses - as well as VERY disciplined pacing and intentional rest, I could regain some function and quality of life.

this means I often have to cut back on activities I REALLY REALLY want to do because doing them anyway will mean I may not be able to do them ever again.

it means doing everything slow slow slow.

it means having very little life in a day. most of it is just waiting - idly scrolling on the phone, not allowed to do anything interesting because if I start THINKING I will ruin my rest and have to start over.

it means never being able to have a job. likely ever again. not even a small side job.