That moment when you get to a safe point in your life for the first time ever and get hit and run over by a train of mental illness, disability and skill regression...
Yayy... Thanks.
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That moment when you get to a safe point in your life for the first time ever and get hit and run over by a train of mental illness, disability and skill regression...
Yayy... Thanks.
non24 culture is half the people in your life not understanding or caring to understand your disorder at all (big rant/vent)
the amount of people who say "have you tried sleeping earlier?" "you should try to go to sleep earlier its not healthy" "well if you didn't stay up so late..." etc. is my biggest pet peeve, yes actually, i've been trying to sleep earlier for over a decade but as it turns out it just doesnt work like that! shocker! who knew a sleep disorder would make your sleep disordered?
people who try to say their struggles with sleep are just as bad just because they stay up on their phone all night, "yeah haha i went to sleep at 2am too" did you spend the 3 hours beforehand staring into the darkness with the lights off, tossing and turning, trying anything to get your brain to shut off? i don't mind other disordered people relating to me, im not some oppression olympics athlete, but i hate when people who's entire problem is poor sleep hygiene try to act as is my life ruining disorder is the exact same
people who think you're asocial/avoiding hangouts on purpose when you just can't be awake for them right now, you have no idea how much i'd love to go to that picnic but unless you want to babysit a sleep deprived zombie the entire time i will not be going
adding onto that, people who think just because you can break out of the cycle for one obligation, you should do it every single time they want you to - i had to be awake at 8am for my disability appointment because if i wasn't i'd be homeless, i'm not getting less than half an hour of sleep, taking unregulated stimulants, and ruining the rest of my week with fatigue just because you want to go for a fancy meal tomorrow
people who demonize the medication/methods you use to self-regulate; i take narcolepsy medication for important appointments as mentioned above - it wasnt prescribed to me, i order it from an overseas pharmacy, but it's what works in a pinch to keep me from collapsing (caffeine doesn't do anything to me) - quite a few people have treated me like an addict just for saying i take stimulants occasionally to treat my disorder
and doctors... god the way doctors treat the disorder is asinine, i got scheduled for a polysomnograph on a night where the doctors KNEW that the time they wanted me to sleep would align almost exactly with the time i'd be awake (communicated this multiple times, only reason i didnt object is because i made the mistake of assuming they had a workaround) and got mad at me when they inevitably got poor results out of it
i sincerely wouldnt wish non24 on anyone, i can't work, i can barely have a social life, im doomed to spend half of my life, for the rest of my life, completely isolated from everyone else and because i'm a rare sighted case there's barely any treatment options
Holy shit. Yeah the doctors sound awful. Everything does.
Hopefully one day there will be more research done for treatment.
Be careful taking the medicine, but if it helps you manage, then keep taking it. Wishing you the best.
Non24 holder
An alter in a CDD system that holds the systems symptoms of non24 sleep wake disorder
Self indulgent, made by Saturn !!
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i dread telling people about my non-24 delayed sleep phase disorder because before i had these words for it the suggestions were always "have you tried sleep deprivating yourself until you stop being disabled?" like i love that the answer to being neurodivergent is always torturing yourself and i can't even be mad at people because until last year i used to give the exact same advice
There’s this really insidious thing with Non24 that happens that when my sleep cycle coincides with what the world deems responsible and healthy, there’s some part of me that hopes it sticks. That maybe this time if I manage my caffeine intake and activity and melatonin supplements I can stay at this “optimal” sleep pattern. Society puts so much fucking pressure on you to sleep at a certain time, and if you don’t, you’re called lazy, irresponsible, unmotivated, etc etc. so it’s this constant cycle of pride and disgust with myself as I fall in and out of “acceptable” range. I just have to tell myself that a healthy amount of quality sleep will always be “more responsible” than forcing my body to sleep at a time when I know I can’t and getting no sleep at all
how it feels to finally shift into your diurnal phase
sleep disorder 10% of the time: hahah diurnal time babeyyyyyy i am god and i will rule the earth
sleep disorder 90% of the time: society is designed to make me fail and then trick me into believing it's my fault. it's either get shit sleep the rest of my life and pretend it's the way living is supposed to feel, or allow my life to fall in line with my natural clock and thus sacrifice all chances of me being able to have a social life, live independently, or even just consistently be in decent health. i will go to sleep every cycle knowing everyone around me is disgusted by my inability to conform to the arbitrary "ideal sleep schedule" set in place. I will never be seen as anything other than lazy and selfish.
Yanno what sucks about non-24 sleep-wake disorder?
When you are in the part of your cycle where you are noctural. And you have a VERY important Thing to go to in the morning scheduled roughly around the time your circadian rhythm is willing to sleep at. Which means I will likely not be sleeping.
This is gonna suck.