#non24

[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?

[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.

[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.

[jokeofanartist]

I love having a sleep disorder so rare that there are like 10 posts on it and no real fix for it because it usually occurs in blind people :D

[ibrokemyotherone]

sometimes non24 is funny because you wind up doing things like having a nice glass of wine with my steak dinner at 6:30am

[a-dog-with-different-paws]

Being a non-24 therian is hard cause I can't do quads for like a week because my sleep schedule is in the morning :(

[waggermama]

I’ve finally gotten around to updating Teen’s sleep diary. I had the data from Fitbit, but rather than faff around with spreadsheets (who am I?!?), I went old school with my monthlies from @diyfish .

This is a classic representation of Non 24 sleep wake disorder (I’d hoped for some change, but no, it’s still textbook), at least Teen is getting some more hours in.

[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

[vodid]

keep feeling like time is going unnecessarily fast like it was JUST january and i was telling my comms i'll get to theirs next week. it was just february and i was rushing to prepare my store. it was just march and i was partying with my friends.

its april

as per usual, time's flying but i realize for me, that feeling is only heightened because time really is just. zoomin'. i literally experience less days in my life compared to normal people. 💀💀 in the past 90 calendar days, i've only experienced 78.

where did my days go, you ask? towards sleep. so much sleep. or just in general, having very long days. sometimes 12+ hours asleep, 20+ awake. its kinda funky to think about.

am i experiencing a shorter life, while still living as long as my peers?

[crowdearest]

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

[teleportzz]

taking a nap with non-24 makes everything on planet earth so so evil and unpredictable. i crashed four hours earlier than i was supposed to in my sleep cycle last night and woke up around when i should be going to bed, and then took another four hour crash only ten hours later????? and now i have absolutely no idea and no way to predict when i'll be going to sleep next. and this basically happens every time i take a nap. as i understand it, people with functioning circadian rhythms can actually have naps sometimes without ruining the whole next week of sleep and having to reschedule everything they had planned 😭

[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)

[rotblume]

y’all wanna hear something funny ?

the thing is, when others “complain” about any aspect of me living with Non24, it’s - naturally really - usually the hypersomnia part they focus on (e.g. sleeping till noon and missing out on things during the day) .. and that is a real nuisance, the main reason for my “certified disability attest” is missing like 35-50% of the life going on around me, but for me, the insomnia part is almost worse: being exhausted, tired, but not sleepy and instead physically unable to fall asleep during the night

yet another funny thing?

for months and months on end and this over years, by now almost a decade, I have - not quite willingly, and before my diagnosis not even quite knowingly, but intentionally all the same - ignored my body’s signs that it needed rest - so that I could go to school and sit in Uni lectures before the diagnosis; so that I could take care of my terminally ill Ma even after understanding what’s “wrong” with me - and so by now, it happens far too often that I simply don’t even notice the signs because I have trained myself to deal with it - in a similar way that I have managed to build up an already high pain tolerance to an even higher pain tolerance because of chronic pain .. though there are also still more than enough days &/ nights where it's the pain that's keeping me awake ..

anyway, here comes the insomnia-part of my whole Non24 shtick into play: if I don’t use the sleep window that opens - the time where my body wants me to sleep - ‘cause I don’t even recognize its existence, it just closes up again and I have to wait another day for the next opportunity to fall asleep - and hope I don’t miss that chance as well ..

that’s why - only a week after my last (at least partially intentional) 60 hour shift cause of an important Uni workshop - I am preparing for a long day to become a (far less intentional) 35-40 hour episode of “I can′t get no sleep” after too many hours awake for the day, realizing 'I must have missed my latest sleep window, cause I was focusing on something else' .. or mayhaps I am currently back in the mindset of "not wanting to sleep because I'm afraid to miss my Ma needing my help and I cannot allow that" as I'm subconsciously just waiting for some bad news from yet another, my next closest, family member currently suffering serious health problems

I'm getting too old for this stuff - and I'm only in my mid-twenties ..

10 years ago I could handle 2-5 hours sleep per 24 hours, 5-6 days a week for months over years; even 5 years ago, I could semi-regularly deal with 2-3 days only on caffeine and power naps, and generally needed much less sleep, instead fueled by concern and grief and pain

now, I'm exhausted .. and I'm tired, is the thing .. but: I am not sleepy

so I can just as well scream into the void and silently rant, for rage is simpler than tears

[rotblume]

Avolition - more than just laziness, lack of motivation or simple exhaustion - is the one part of depression I am sure you cannot understand until you've been there. For me, that is one of the worst aspects of it all, though you can't really rank them, it's just awful all around.

Before, I was so self-disciplined, I had absolutely no problem with procrastination and doing the usual or any necessary things, even if I didn't particularly wanted to do them, which makes it even harder on me now. On occasion, it's even difficult to do the things I absolutely should do, want to do or just generally might profit from and get enjoyment out of it.

Sometimes I'm "good" for a couple of weeks. And then something, usually an "outside factor" beyond my control - such as yet another piece of bad news, once more destroying Plan A as well as messing up contingency plans B and C right along, or just like my Non24-rhythm shifting or a week of constant debilitating pain stopping me from attending uni - pulls me out of the routine of a functioning human being and it is always such a hard battle to get back to it.

Then I try not to think about the fact, but am still painfully aware of it, that even if I manage it once more, I might find myself in the exact same situation again a few weeks later. It's so hard not to lose hope, when you've lost so much already, but it really is a point of pride - my own mind screaming at me that I can do it after all I have already gone through and wanting to make the angels watching over me and the souls on the other side of the rainbow bridge proud.

Sometimes self-care is, actually, NOT getting onto the computer and little treats and watching youtube videos. Sometimes those things are self-care, but sometimes they're also avoidant behaviors.

Sometimes self care is waking up and just. Fucking getting in the car. And driving to the bank. And the store. And buying the cat litter. And changing the cat boxes you've been avoiding because your brains been stuck in a hole. And picking up the trash you've been piling up. And getting a load into the wash. And mowing the lawn before the village council sends you a formal complaint and potential-fines warning.

Like its hard and annoying to do because it sucks. It sucks so much. But if I don't start working on this pile of bullshit I've let build up because it stinks and i was stuck in deer-in-headlights mode, I risk letting it turn into fuckery. I do not have the patience for fuckery that I once - foolishly! - thought I had.

[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