#circadian sleep disorder

[adhbabey]

Y'all..... Delayed Sleep Phase Syndrome is actually hell to live with, and its debilitating to experience. It's not my natural cycle, because if I had a natural cycle, I would not be ocillating between getting up at 8 am and having a normal schedule and getting up at 12 am, 3 am, 5 pm, 8 pm, 11 am, 12 pm, whatever fucking time of day my brain decides to sleep and wake up at.

Maybe y'all didn't experience this, but every summer between school years, my sleep schedule would become fucked up. I would also kick and scream whenever I was waking up for school, and I never could figure out how to get to sleep, even now, I haven't been able to go to sleep when I want to, even if I am crying my eyes out tired.

Its only when I was on ADHD medication for a period of time, I was able to sleep properly.

So yes, it's a disorder, no it's not natural.

[mayawakening]

Well, it's official, I'm a unicorn. According to my very baffled sleep doctor, I am a sighted person with Non 24 Hour Sleep-Wake Disorder.

Anyone else in this very small house? 😭

(Non 24 affects only 0.03% of the world and the vast majority of those people are blind)

[chronicsymptomsyndrome]

“Winners don’t hit snooze” drop dead actually. Fucking die.

Winners don’t go around assuming everyone is just as privileged and healthy and well rested as them

Winners don’t shame others for whatever accommodations they might need to maintain a decent quality of life

Winners don’t act like pretentious ableist assholes in fact I’m pretty sure winners are perceptive open-minded kind and understanding. Idk

[chicago-geniza]

Forgot to eat all day and woke up at nearly 1 am famished, setting out for Wendy's before they close. Unemployment is so back

[hellbrainspeaks]

I really hate that I have to refer to my sleep cycle as a disorder. If I can sleep with no other difficulties besides when my natural circadian rhythm decides it’s time to wake up and fall asleep, why am I considered the problem. Humans socially engineered the 9-5 schedule, that’s an artificial barrier we constructed for ourselves, and is a very recent development in history. Why is that the norm and me the problem. Evolution didn’t design us with jobs and schedules and money in mind

[oncillaphoenix]

having a circadian rhythm disorder counts as Horrors Beyond Your Comprehension i think. i mean. not beyond my comprehension, i've lived like this my whole life. but it certainly seems to be beyond everyone else's comprehension, including sleep doctors.

[thomas-jeffferson]

anyone else with circadian rhythm sleep disorders get so insanely mad at people when they tell you to "fix your sleep schedule" or "oversleeping isnt healthy" or to "go to bed"

shut up. literally shut the fuck up.

m sorry but I have been dealing with this my whole life and this is how my body functions. YOU'RE body actually fits a 24 hour day cycle. MINE DOESN'T.

i cant fucking "fix my sleep schedule" because my body doesnt recognize that im on a 24 hour cycle dumbass. I cant make myself get tired and i cant make myself get out of bed.

I've missed my drivers test 3 times bc of my sleep issues and i keep having to reschedule. I don'y have a single memory of having a consistent sleep schedule ever.

I HAVE to "over" sleep for my body to be able to function. it's how i can get out of bed at all. before I homeschooled i was staying up for 24-30 hours once or twice a week just to not miss school.

please just stop telling people how to fix their disabilities when they have probably tried every solution or remark you have offered them. Its not the goddamn caffeine sharon.

[neopronouns]

flag id: the leftmost quarter of the left flag has 4 stripes, which are golden yellow, sky blue, faded indigo, and dark blue. the second quarter has those stripes shifted down by half a stripe, with a small section of dark blue at the top. the third quarter has them shifted down again, making the top dark blue section a full stripe. the final quarter is shifted down again, with a small section of faded indigo at the top. the right flag is the same, but each shift down is a full stripe length rather than half of one. end id.

banner id: a 1500x150 teal banner with the words ‘please read my dni before interacting’ in large white text in the center. end id.

two versions of a non-24-hour sleep-wake disorder (n24swd/n24) flag for myself!

both flags use yellow and sky blue for being awake and purple and dark blue for being asleep, with both flags shifting those colors 'forward' several times to represent one's circadian rhythm being out of alignment with the typical 24-hour cycle.

tags: @mad-pride | dni link

[ticklace]

Shout-out to my chronically and/or mentally ill friends who are sensitive to shifts in meal & sleep schedules and had their routine shot to hell by the time change today.

One hour's difference isn't a trivial thing. Please be gentle with yourself this week.

Some helpful routine-recalibration things I've collected from various friends and nurses, in case they might be helpful to anyone else:

If you take medications at exactly the same times every day, be aware that your body might need to get used to the shift.

Don't be afraid to bring some extra snacks with you to work/class if you can. (this doesn't just help with delayed mealtimes - sleep schedule disruptions can also really throw your blood sugar out of whack so keeping it steady is important)

Drink lots of water.

Keep your support network close.

If you suddenly feel unbearably shitty, maybe eat a snack.

Sunlight is good for re-calibrating your circadian rhythm. Fresh autumn air is good for just about everything.

Please please please try to resist the temptation to doomscroll this week. (USA, I'm looking at you.)

Most of all, please give yourself plenty of grace. I love you. You're doing so well. ❤️

[mooonbae]

[ my favorite neurodivergent coded characters 46/♾️ ]

[444meat]

this post is a bit long but please read it if you do not have a sleep disorder, more specifically if you don't have a circadian rhythm disorder, i need y'all to understand something

i never thought i would have to write this, but yes, sleep disorders can be incredibly disabling. my sleep disorder is a disability.

i had to drop out of highschool as soon as i was legally able to do so. i had health issues my entire life, both physical and mental, but the brunt of my physical health issues started when i was fourteen. i had to repeat grades and certain classes due to frequent absences. by the time i was sixteen, i could not attend school without a manual wheelchair. as a young adult now, i can't leave my house without a powerchair if i'll be expected to walk more than five minutes, and even then, it's much better for me to just use one unless it's totally impossible. on top of that, i experience flu-like symptoms that make leaving my house extraordinarily difficult. by the time i dropped out, these symptoms were disabling enough to keep me home, though they were not as bad as they are now.

i bring this up to point out that i am otherwise physically disabled, and to carry on to say that these symptoms were not the driving factor to me dropping out. living in a major city, there is a significant chance that i could have found a school to attend which could accommodate me. it would not be easy and i would still have a much harder time than other students, but it would be an avenue worth exploring. i would be able to try it. considering my financial situation, i would have been able to afford a private school. i could do online schooling. there were options.

because of my sleep disorder, we literally could not even look.

my waking hours vary wildly from day to day. sometimes for weeks at a time i will wake up after sunset and fall asleep after the sun has risen. i've had weeks where my sleep schedule more closely resembled friends i had made on the other side of the world than people i knew in person. even then, i cannot properly adjust to being awake at night, because there are also times when i'm awake on a seemingly normal schedule.

i briefly attended an asynchronous online school before dropping out. it was the best one i could access. it was awful. the lessons were bad, the teachers were bad, the work was bad... not even only in quality. there was a lot of ableism and other bigotries that demoralised me. because i couldn't attend the virtual classes due to my sleep schedule, i also fell behind academically, and because of my other health issues, i didn't have the energy to catch up.

making doctors appointments is terrifying because i never know what my sleep schedule will be like when the time comes. most doctors in my area are extremely booked. i've missed a rheumatology appointment and had to reschedule for six months in the future, and because i had to stop taking my pain meds from GI side effects and my allergy meds stopped working, i had to go without any medication that entire time. i physically cannot force myself to wake up without getting enough sleep because my body is fragile and i will start experiencing severe & unbearable symptoms of my other disorders. these cannot be pushed through. i cannot even try.

the "best doctor" for circadian rhythm issues in my area — a major city, might i remind you — only takes patients during early morning hours. this is not a joke. despite the most common circadian rhythm disorder causing people to wake up late and fall asleep late, the guy who is the "best" for treating them doesn't see people after 11 am. it is easier for me to maintain a 'wake up at 3pm, fall asleep at 6am' schedule than a 'wake up at 3am, fall asleep at 6pm' schedule. i cannot see this doctor. when i briefly managed one appointment with his secretary, she just told me to set an alarm and fall asleep at the same time every day. that was all of her advice. like i have not tried that.

as far as i'm aware, there is a single medicine approved to treat the condition i have. last time i checked, it costs something like three thousand US dollars a month. 6 times as much as my old heart meds, which were already very difficult to get covered, even with really good health insurance. the meds supposedly take months to even start working.

i had a delayed sleep wake rhythm my entire life and ran on very little sleep to get to school, to the point that i started uncontrollably falling asleep at school after my health issues started and necessitated more energy than my body had. my sleep cycle started moving forwards as it does now when i was sixteen. before i stopped attending, i would frequently attend school on 0 hours of sleep, get home, and fall asleep immediately.

the world is not built for people with circadian rhythm disorders. my sleep disorder makes functioning on a normative level impossible.

i NEED people without sleep disorders to stop treating this like it's some funky and low stakes thing to deal with. i am so tired of having people tell me they 'wish they could be nocturnal' or that they 'love staying up all night' when i tell them about my sleep disorder. you DO NOT want this, and this is VERY DIFFERENT from occasionally staying up late for fun. yes, being awake during nighttime hours can be freeing. it stops being freeing when you have no choice on the matter, have to be socially isolated for weeks on end, cannot reliably schedule doctors appointments, cannot attend school or work any job with specific hours, cannot maintain an eating schedule or a schedule for taking medication because you're never awake at normal times, etc etc etc.

and it's not as simple as taking melatonin. when i take melatonin it stops working after two uses and the times it does work i get at most 3 hours of non-restorative sleep and my sleep schedule either goes back to what it was before the next day or gets significantly worse much faster than it normally would. it's not as simple as not using screens. i've been in settings without screens for months and still had it happen. i've lied down for 8 hours trying to sleep and failed. there is no easy fix. this is how my body works.

yes it's a disability. no you don't want it. it's not a quirky character trait. think before you speak please.

a note: this is not intended to state that being otherwise disabled is not also a valid or genuine reason for dropping out of school. there's a good chance i would've had to drop out anyways, and i can't attend school now with how my symptoms have progressed, regardless of the sleep schedule. i wanted to illustrate how the combination of a sleep disorder and other chronic illness makes my life significantly more difficult and how it reduces my access to accommodations and care.

[teleportzz]

fucking bullshit that i got diagnosed with "sometimes-lives-like-a-vampire" disease and it isn't even fun. it's actually kind of a nightmare

[mayawakening]

Having a sleep disorder is at least a little funny.

I've literally been prescribed sunlight and water as a part of my chronotherapy.

Excited to see what other medieval fantasy sidequests my life has in store.

[abyssbirds]

The fact that most of the tags under n24 have nothing to do with the disorder and that there's only a handful of posts under every single tag for it sure FEELS like ableism even though it might not be. But I have the time to talk about it so I might as well spread visibility.

(Info under read more)

N24, Non-24, or Non-24 Sleep-Wake Disorder, is a circadian rhythm disorder where your body doesn't run on a (roughly) 24-hour cycle like most people/people without the disorder itself. For example, my days run roughly 18-19 hours instead of a typical 16. My sleep gets later and later and later. I've tried melatonin, tried resetting my sleep schedule by staying up for >24 hours until a "normal" time for bed, and tried keeping ambient noise on like music or nature sounds. I've tried blue light filters. My days are just 26-27 hours instead of a normal 24, though every person with N24 is different.

It's primarily diagnosed in Blind patients, since the cause among Blind people with the disorder seems to be that not being able to see the transition from day to night makes their bodies not produce the proper sleep hormones at the right time.

Among sighted people, the cause seems to be unknown (last time I checked; just one person with the disorder should not be your only source of information!) and, since N24 among sighted people is more rare and less lucrative, it's an orphan disorder. There's not much research into how to help us sighted people with N24 because treatment is often pricey or not an actual solution, or it is aimed directly towards helping Blind people with N24.

As far as I know, there's apparently an implantable device in development. The main suggestions I see are training via sun lamps and melatonin or just trying to get on sleeping pills by lying about insomnia. There is a pill that can be taken, but if you live in the US, it is extremely expensive. So, essentially, this orphan disorder is overlooked and misdiagnosed, and those of us with it have to hope that one of the coin-toss methods of treating N24 works.

N24, even on its own, can be a very disabling disorder. You're either too-sleep deprived to do the things during the day you need to or are busy being asleep because the human body needs rest at some point. Socialization gets very difficult when your circadian rhythm is nocturnal for a couple of weeks. It's an isolating experience. It also makes it harder for people to work and make themselves money. I don't even know if N24 is something that can apply to an application for disability, though given it's not well-known, I doubt it is.

I'm not used to making informative posts like this, so I don't know how to end it, but please do some research into N24 on your own time--I am by no means a medical professional and my anecdotal explanation may contain errors. I just want people to know we exist.

[astromechs]

single dumbest take i have ever read on this hellsite

[sideblogformentalhealtshit]

I hate the shame that comes with N-24 so much. Every time I stay awake for longer than the day before I feel almost physically sick with the amount of guilt and shame at not being able to control my sleep schedule. It feels like a personal failure every time