#n24swd

[teleportzz]

pretty unlikely but are there any other autistic people with non-24 sleep-wake disorder out there who experience this odd mix of distress and jubilation when your sleep schedule realigns with polite society? on one hand, i'm happy that i get like a week or so of actually feeling well-rested and awake at school and like i'm part of the world and society around me, but on the other hand, i get kind of used to being awake at 3am when everyone else is asleep and the world is quiet, so i get very distressed and get sensory overload more easily because i'm reliant on being awake in the middle of the night to help me regulate

taking a shot in the dark here, i know, but if anyone else knows what i'm talking about i'd love to connect. maybe people with other circadian rhythm or sleep disorders like insomnia might also relate?

[mothter-mash]

happy disability pride month to people with sleep disorders btw, especially circadian rhythm disorders since they dont get talked about as much

[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

[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.

[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.

[rotblume]

24. November is Non24 Awareness Day

Non24 is a chronic neurological 'circadian rhythm' disorder (like Advanced, Delayed and Irregular Sleep) - primarily affecting the sleep rhythm, but also many other bodily functions, which are all inter-connected, such as appetite and digestion, temperature and immune system, energy and concentration or mood & mental health.

It is a very rare disease and therefore not much is known about it. As a matter of fact, and quite unfortunately, many of the medical professionals still believe it only affects blind people without light perception as the sun is the most important 'zeitgeber', when all evidence proves sighted people can suffer from it as well.

It can also be easily misdiagnosed (e.g. idiopathic insomnia/ hypersomnia or depression etc.), if there is a diagnosis at all and not only prejudiced social judgement, so that you don't even get to a sleep expert. It must be assumed that there is a high number of undetected or unreported cases, especially among sighted people.

There are very few and very limited treatment options. Those available to me, I have tried without success.

At best, they don't really work, at worst, they make me feel worse. Personally, and like most others I know of thanks to our facebook support group, I feel most healthy when free-running (meaning I follow my body's inherent rhythm and sleep when I'm tired), instead of forcing myself to day-walk and try to entrain to a more normal (= the modern average) sleep pattern (sleeping only at night, staying awake throughout the daytimes), which at some point is simply impossible for me either way - after some time of (good or any at all) sleep deprivation, my body crashes due to the lack of sleep.

I have Sighted Non24. My day is about 25 hours long.

This means that instead of having stable wake and sleep times (e.g. a 24 hour day with 8 hours of sleep between 22 and 6 o'clock and 16 hours spent awake), one day I become tired at 22 o'clock, the next at 23, the day after that at 24. If I have to get up at a certain point in time for work or university, it ultimately results in less and less sleep.

I am unable to sleep when my body is not sleepy, I literally just roll around in bed doing nothing, tired but awake. Even after a week or more of this, with the hours of missed sleep adding up, my exhaustion does not put me to sleep.

When it comes to the point where I become sleepy just as I have to get up, for a few days I might even be able to "just work through" my night, until in the end the sleep deprivation - basically the complete lack of healthy rest - literally forces my body to shut down and I fall asleep in my seat during lectures or standing in the bus.

It is an invisible disability. It's well on its way to completely destroy my life, because I am unable to even finish the education needed for jobs I could do at home on my own time.

It was a war, battle after battle to even get this diagnosis. I am still fighting to get actual disability accomoditions.

[vodid]

non24 sleep-wake disorder is going from 26 hour long days to 32 in a matter of two days bc ur body really hates being awake during the day. and not feel tired.

[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)

[crowdearest]

I was so upset earlier bc I had an appointment about my sleep study and he said "oh you have sleep apnea, if you want a cpap let us know, and if not bye" and I was upset because I was seeing him about non24. And I was crying about that and then the HETLIOZ PEOPLE CALLED ME AND SAID "HI WAITING ON INSURANCE, HERES A FREE 30 DAY SUPPLY THO" AND I WAS NO LONGER UPSET

[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

[thomas-jeffferson]

having a fucked up circadian rhythm sucks because if im conforming to a "normal" sleep schedule i feel like shit but if im freerunning i feel amazing but extremely isolated because i cant talk to any of my friends except for short windows of time.

[whoselabelisitanyway]

Hello i couldn't help but notice that u offered urself up as a resource for info abt N24 (sorry if i got that wrong, feel free to ignore this.) So as someone who very recently found out abt it and also probably has it, do u have any resources? Links or articles or anything for me to look at? Anything you could/want to share abt it??

Hey! Yes, I'm happy to write about my experience with N24. (It's not fun, but it's reality for many people.) The sad thing is that I don't actually have many online resources as far as articles and such. A quick internet search showed me Non-24-Hour Sleep Wake Disorder: Definition and Causes | Sleep Foundation which seemed to be a good overview (more articles linked at the bottom of the page). It's very clear that there hasn't been enough research done in a practical sense, though. Treatment options are few, and there aren't any that are at all flexible. Which, I'll just say it, sucks.

For me personally, my N24 is pretty severe, with my days lasting about 30 hours or such, so that I'm awake for something like 20 hours at a time. None of the treatment options presented to me (melatonin and/or light therapy) were effective (I have unusual environmental factors against me, though). That doesn't mean you shouldn't try them, IMHO - but I would caution you against accepting whatever sedatives doctors are handing out these days. If that's their initial reaction/treatment advise, ask them if that medication is approved and tested effective for long term usage. (It won't be - if I'm wrong, lmk, because I'd like to be wrong.)

Lastly, I'll tell you a bit about how I got my diagnosis. The biggest factor was a comprehensive sleep diary. Sometimes they'll ask you to do a sleep study as well, to rule out other sleep disorders. A sleep diary is crucial in helping the specialist evaluate the progressive time changes in your sleep patterns. I recommend getting a low-cost sports watch (with a small profile so it's comfortable to sleep in) if you don't already have one. That was a huge help to me when I was documenting my sleep patterns.

I hope that helps! I wish I could give you better news, but I do believe it's preferable to know what you're dealing with than to not - even if it's not something with an easy fix. Let me know if you have any other questions - I am not a sleep doctor or physician, but I can speak to the realities of living with N24. If I can help others at all, I like to. Good luck!

[crowdearest]

When the phone starts ringing at noon just as you get settled in to go to bed

[vodid]

speaking of n24, my 2nd anniversary of tracking my sleep and joining the n24 community is coming up \o/ very excited to share my graph. it's gotten funky in some areas

[funnywizard3000]

LMAO just found out that my sleep disorder counts as a significant disability. Can the state pay me money about this