whenever I talk about physiological sleep time differences - everyone has a different circadian rhythm and a different optimal time of day where they should sleep - I get a couple of people telling me that it is simply not feasible, in this society, to sleep when your body wants to be sleeping.
if you're a night owl, you simply can't hold down an education or a job while sleeping in your natural pattern, especially not one that GETS you anywhere.
I know.
let's talk about the consequences.
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.
but I can do some things. I can learn a language, I can read books, I can even WRITE books (slow slow slow), I can grow plants and turn them into medicines (I DID mention the questionable supplements, haha), I can even go foraging for plants, i can do long trips on the bike, I can do physio exercises to maintain my skeleton, and sometimes, when the stars align, I can even go visit some friends! unthinkable in 2015/16/17.
so it's not pure misery. I am okay.
but this experience is why I am here shouting into the void that you MUST TAKE YOUR BODY'S NEEDS SERIOUSLY.
sleep, nutrition, rest, medicine.
even DOCTORS will give you advice that can ruin your health, because restricting basic physiological needs is perversely considered GOOD.
but the only person who can tell you what your body needs is YOU. you are the ONLY person actually receiving its signals.
LISTEN TO THEM.
not doing so can kill you. worse, it can take your life WITHOUT killing you.
@skye me, with chronic fatigue since 2015, going to the sleep clinic, being told that I should get up at 7h to be able to sleep ealier and miraculously fix my life: * does that, be sick as fuck *
I am really happy to have the privilege to work when I want and not having to submit to office schedules... And doctors suck
@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.
@skye Yeah, being there at 9am was "manageable", if you think you can manage constant headaches and exhaustion, decreased appetite, weight gain, depressed mood, irritability, etc... Fortunately I was dismissing doctors with "yeah, doesn't work", even before I knew what "doesn't work" really meant for me.
I have no official diagnosis for delayed sleep phase syndrome BTW, I just saw the Wikipedia article one day and saw myself in it.
@skye Yeah, I also think I don't really need one, unless I get caught in some red tape in the future.
My husband is German and we live in Greece. Oddly enough, he finds that Greek doctors seem to care more about their patients and it's not just business. Now yes, our medical system is painfully underfunded, but the overall experience is better here.
I'm not seeing where vi said vi was suicidal, or even touched on the subject?
Seems kinda ableist to read that into it to me?
[Edit: I had missed a single mention on the final toot of the thread, apologised below]
skye it/its 🏳️⚧️
Crystale
Anke
Taina
RoAnna Sylver 
Jade
AutisticMumTo3
Vivia 🦆🍵
icosalice
kris 🦑
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