#non 24

[parliamentrook]

Part of why I didn’t date for ages is because I thought my non24 would be too much for someone to deal with.

Boyfriend mentally keeps track of my forward shift and sends me a good morning text when he estimates I’ll be getting up, and he’s very good at it.

He’s gotten up early for breakfast dates when I’m nocturnal and it’s my “dinner” time and is great in general at being adapting to my schedule.

He’s fine with making future plans knowing well that we may need to be flexible or even cancel if my sleep is off.

Last week I made a comment that I wish I could predict the shift longer term. He immediately texted some techie friends and one of them is working on an app to make a calendar with a shifting time slot.

[this-is-neuropsych-ableism]

Not enough people talk about how debilitating circadian rhythm sleep disorders can be.

[PT: not enough people talk about how debilitating circadian rhythm sleep disorders can be. /End PT]

It is genuinely so fucking exhausting living in a world built for people with a 9am-5pm (or at latest 11am) expectation of wakeness.

I have a circadian rhythm sleep disorder. Sleep disorders already aren't spoken about enough, but almost nobody talks about CRSDs.

CRSDs mean a person wakes and sleeps at atypical times. A person with a CRSD isn't just a "night owl" or "early bird".

They are not "choosing" their body's natural sleep schedule. (PT: They are not "choosing" their body's natural sleep schedule. /End PT.)

In fact, usually, they cannot voluntarily change their schedule - their body will not readjust to a schedule change, and will continue to produce melatonin and sleepy chemicals at its predetermined time.

Specifically, I have non-24 sleep wake disorder (N24.) This means that my sleep schedule either slowly shifts an hour or two every other day, or it drastically swaps.

Example:

Sunday: I am falling asleep at 9 pm and waking up at 10 am. Monday: Same as sunday. Tuesday: I am falling asleep at 11 pm and waking up at 12 pm. Wednesday: Same as tuesday. Thursday: Same as wednesday. Friday: I am falling asleep at 2 am and waking up at 3 pm. Saturday: I am falling asleep at 4 am and waking up at 5 pm.

Etc, etc, etc. My sleep either constantly does slow rotations over the course of several weeks, or one day I wake up and don't produce melatonin at all for like 20 hours, and suddenly my sleep schedule is turned all around.

I cannot take melatonin or sleep medications. [PT: I cannot take melatonin or sleep medications. /End PT]

It does not help. It just leaves me incredibly groggy and disoriented for literal weeks afterwards.

I cannot force it to change through all-nighters. Not really. Sure, after an all-nighter, I *physically* sleep at the "correct" time, but my body still produces melatonin at the time it wants to sleep, too.

So I may be physically awake at the "correct" time, but I'm *mentally* groggy and barely conscious.

N24 is debilitating. It makes you incapable of having 99% of jobs. It leaves you unable to spend time with friends like 70% of the time, unless you're willing to be groggy doing so, or they happen to be free to hang out during the times you're awake.

You can't schedule a lot of things in advance. You have to sacrifice sleep to do so, so you have to be selective about which things you schedule. I schedule two markets a month, maybe 1 other (non-work) event, and I pray my sleep schedule aligns. Most of the time, it doesn't align, and so I have to sacrifice my sleep.

Since 70% of my time awake is during the night, that means it gets lonely. It's depressing. Most places are closed at night, most people I know are asleep, my one solace is my best friend who lives across the world and is awake during the night, and my mom who also has a circadian rhythm sleep disorder (specifically delayed sleep phase disorder, which means she doesn't sleep until late into the night).

[inclusive-youth-liberation]

i am currently ill with what is probably a cold/maybe the flu (i hope fukcing not) so forgive me if this is somewhat disjointd

i did not go to school today, and did everything at home. I get up at 4AM almost every weekday for my own convenience and the fact that i often feel like i don't have enough time for myself because of school. Because I am ill, i want to sleep in a lot later but i also know that that won't end well for me! It'll end with me being unhappy and uncomfortable during the school day despite being "well-rested". I do not have enough time to actually sleep because I AM A TEENAGER. i also have a birthday party this weekend (it's mine! yay!!) and am tyring to not be sick by then!! what i'm trying to convey here is that the amount of itme school allows students for sleep is not enough especiall considering the activities that a lto fo teenagers enjoy signed, a teenager whose brain is melting a lil

Minors deserve to have a school system that allows for as many sick days as needed, firstly. Not just because minors can (gasp!) get sick, but also because some minors are (gasp!) have disabilities that can flair up! (Who would have thought? /sarcasm.)

Secondly, minors need a school system that can cater to their sleep schedules.

I (and my system as a whole) have non 24 hour sleep wake disorder (Non-24 SWD). This means that my entire life, I never have had a consistent sleep schedule for more than a week, and I am physically incapable of changing that, because my body responds poorly to sleep medications. My sleep either slowly shifts a few hours ahead per-day, or it drastically swaps what time I will fall asleep.

Growing up, I was being homeschooled, but it took a while before my bedtime was removed by my parents. Mainly because I was so anxious about telling them that I didn't always obey the bedtime (because my melatonin production didn't always align with the bedtime), and would secretly sit up in my room drawing or playing games on my kindle at night. I was scared to get in trouble for it.

But when my parents figured out, you know what they did? Instead of getting me in trouble, my mom was understanding, and simply changed the rule from "finish your school before this time of night" to "finish your school within whatever period youre awake" and removed my bedtime.

All of this to say, there should be options for people who cannot wake up at specific times, and there should be options for people who cannot leave their house. There should be more free online programs provided by schools, night owl teachers, things of that sort.

And for the love of God, less homework! School shouldn't follow you past school hours! Let youth have time to enjoy their lives outside of school, and let them have time to sleep!

-Mod Arwen (he/him)

[notebeans-galaxy]

i'm attempting to stop taking beta blockers and not immediately get floored from POTS symptoms because they're making my asthma worse, right? well i took my meds a bit ago, sans beta blocker, and noticed my asthma start getting worse in a way Really Similar to when i take beta blockers. however this week i made handful of other medication changes, including adding melatonin to my meds for the week (bc 3 day weekend means i caught up on sleep and now i need to fix my sleep schedule). the other changes involved meds ive never had bad reactions to.

i have consistently had weird vaguely shitty reactions to melatonin - mainly being extremely dehydrated (more so than normal), and it just generally not actually helping me sleep sometimes, so i suspected it was maybe the culprit. and yesterday upon googling to see if my suspicion of sleep deprivation making asthma worse was founded (it is), i realized that non-24 might actually be part of why my asthma is getting worse. i'm forcing myself to operate on a 9-5 type schedule to go to classes for college 9 months of the year, which means i'm sleep deprived for most of that time. so given exogenous melatonin barely works for me, i googled to see if there's a connection between melatonin and asthma.

Melatonin exacerbates asthma, study finds

Asthma sufferers generally find their condition gets worse at night. Now researchers may understand why. Melatonin, a sleep hormone that is

melatonin conclusively makes asthma worse. well, shit. no wonder it doesn't fucking work, it's making my breathing worse which also makes it harder to sleep.

and no one fucking thought to tell me that you're not supposed to take melatonin with: beta blockers, corticosteroids, antidepressants, or immunosepressants? ALL OF WHICH I TAKE OR HAVE TAKEN IN THE PAST? i was on fludrocortisone AND betaxolol and when i was directed to take melatonin by a sleep specialist! what the hell!

[yourfavehas-non24]

v1 from ultrakill has non24. it's a nocturnal machine, i sure hope it does

V1 from Ultrakill has Non-24-Hour Sleep-Wake Disorder!

flag by @/neopronouns

render is (as far as i can tell) official

[gothic-lottie]

Not sponsored or anything but I found this site for sleep tracking specifically designed for non-24 sleep disorders and it is incredible. In the past, I've tried sleep journaling and stuff but this has been way easier for me. It looks pretty, it has different types of charts it can display your sleep in, and it even tells me what part of the world my sleep is currently aligned with. It tells me what my average drift is too (about an hour and a half a day which is what I thought it was so that's very affirming) it also let's you track outside factors that impact sleep like meds, illnesses, and being artificially woken up.

So yeah, so far I highly recommend Circadia for sleep tracking if you have a sleep disorder.

Here are some of the charts that I like

And it says my schedule is currently aligned with Lagos which is fun. I wonder where I'll be tomorrow lol

It also has an optional "community" feature where it tells you the number of other users who are on the same schedule as you and a few other things so you don't feel as alone in this (no names are included on it but it still feels nice and it means I can use that feature while still maintaining privacy)

For anyone who doesn't know what a non-24 sleep wake disorder is, info below the cut with some personal anecdotes mixed in ↓

A non-24 sleep wake disorder is a difference in the circadian rhythm. The average person has a 24 hour rhythm and for simplicity, we'll say that means a clean 16 awake, 8 asleep. A non 24 rhythm means any circadian rhythm that isn't 24 hours which can be shorter (called backwards drifting) or longer (like me). I'll use myself as an example- well, a simplified version of me because I have other disorders that also affect my sleep- so my non 24 is roughly 25.5. That (ideally) means about 17 awake, 8.5 asleep (obviously from the charts, mine is a bit more inconsistent than that) so I drift out of alignment with the rest of the world.

It makes scheduling events and appointments incredibly difficult and holding a normal job basically impossible as no jobs want to make accommodations to work whatever hours you're awake. (though for me my other disabilities would also make that very challenging) It can also cause issues in interpersonal relationships due to being inconsistent in available waking hours that can make me seem flaky if I have to cancel plans or leave early or drop off a text conversation at a weird hour. (I haven't had big issues with anyone on here being upset about my sleep stuff. Y'all are awesome.)

For me personally, it also adds difficulty to simple parts of life that I require supports in. For example, I can't always safely use knives or different means of cooking food so if my schedule is significantly out of alignment with others, I can't get the support I need without waking someone up which isn't always an option. If we don't have anything I can eat, it's also normally during hours that everything is closed. (I miss 24 hour grocery stores ;-; )

It causes difficulties in getting medical care sometimes as well. For example, I'm technically supposed to be in OT and PT but I can't regularly attend because of schedule issues.

Before we knew what it was in my teen years, we actually thought I had narcolepsy for a while because I would keel over at seemingly random times. It obviously wasn't quite a fit for the description of narcolepsy but that was our first guess and if we hadn't let my sleep schedule go and do what it was going to do, we might never have noticed the trend. Keeping me on a 24 schedule was hell. It took mom making it her full time job to manage me, it made me able to do so much less in a day, sleep medications did not help, and still with everything we did the schedule would fall apart after a week or two because I would have "insomnia" or would wake up too soon.

[antisinful]

Frankly all of my illnesses and disabilities would be a lot more manageable if not for Non24. Like the sheer amount of support options that are completely out of reach for me as a direct result of this circadian rhythm disorder makes my prospects feel even more depressing than they already did.

I genuinely don’t know how to turn anything around. There is virtually no accessibility unless you have a normal circadian rhythm, and I know my mental and physical health will pay the consequences for lacking intervention down the road.

[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.