I'm Sky (Fae/They/It/She/Xe), and I have type 1 narcolepsy.
Saw there wasn't really an account for people with sleep disorders to congregate and share our experiences, so I made one!
I've recently changed to a new username, representing how all sleep disorders are welcome, from idiopathic hypersomnia, insomnia, and circadian rhythm disorders to sleep apnea, restless leg syndrome, parasomnia, and everything else.
Profile picture is the disability pride flag, since I couldn't find one specific for sleep disorders.
I also accept asks about ableism, but if you want more options, @this-is-neuropsych-ableism and @this-is-physi-sensory-ableism are great places where you can submit your experiences with neurological/psychology and physical sleep disorders respectively!
If I make a mistake, either by spreading misinformation or saying something bigoted, I encourage you to reach out to me in some way so I can learn and correct. I acknowledge that I may be ignorant in some areas, and while I do my best to avoid harmful behaviors, I am not immune to being wrong, and want to correct any bigotry I may unknowingly be perpetuating.
Rules and mod beliefs under the cut
1. Be kind! Don't use any slurs, don't be a bigot, basic kindness. And don't be rude to people.
2. No fakeclaiming!
3. Do not directly name someone in a call-out. You may vent, but do not share a name. If there is cause to block someone (bigotry) and you want me to share them for blocklist reasons, send me a direct message.
4. I support all gender identities (or lack thereof)
5. I believe that transandrophobia exists.
6. I support endogenic systems.
7. I support anti-contact pro-recovery disordered paraphiles.
8. I believe that Otherkin/Nonhuman/Alterhuman identities are valid, and that someone should not be judged for their kintype.
9. I accept anyone regardless of heritage, race, ethnicity, nationality, religious beliefs, or spiritual beliefs, as long as these are not used to justify bigotry.
10. I accept those with any disorder or condition, including but not limited to paraphilic disorders, cluster a disorders, cluster b disorders, cluster c disorders, psychotic disorders, mood disorders, substance use disorders, eating disorders, sexually transmitted diseases/illnesses (STD/STI), human immunodeficiency virus (HIV), acquired immunodeficiency syndrome (AIDS), tuberculosis (TB), and all others not listed here.
11. People of any weight are valid, and weight should not be stigmatized. Additionally body mass index (BMI) is bullshit and does not accurately accommodate the amount of variety our bodies can have, nor does it consider things such as muscle mass.
Not exactly a culture thing just a thought I regularly have as someone with sleep disorders
I have delayed sleep phase syndrome (2am - 10am ish sleeper specifically) and I've been thinking a lot about how society atm is built to punish those of use that aren't awake all day and sleep all night
Even without dsps, people that are night workers - society would collapse without night workers yet they're still punished for not being day workers.
Wanna do basic living things like going to the store, bank, post office, and doctor? Gotta be up during the day. Wanna do fun extra things like going to/planning events, seeing people that aren't coworkers, going to restaurants, getting a fun little (non alcoholic) drink? Gotta be up during the day
It's so dumb. It fully makes sense for certain people to function better at night because humans, while not exactly pack animals, are typically social and exists in groups, if the entire group is asleep at once that makes them all vulnerable. And while this isn't really relevant anymore since we're not wild animals, it makes sense that some people retained that difference in sleep-wake cycles
Even tho we 100% need people that function through the night they're punished for fulfilling that need. Capitalism is crazy
Yeah. It's fully catered towards early risers and people without sleep disorders. The world hates being accessible to people who have sleep schedules that don't line up perfectly with what the chosen norm is.
(excessive) sleep disorder culture is people acting like you sleep so much Just to spite them . why are you mad at me for sleeping all day .. i am not doing it intentionally ?? 😭
Yep! Or like you are choosing to be tired to get out of things.
Trying to see if red bull has a lot of negative impacts in the long term with using it as a way to ward off sleep attacks (Probably a few times every few weeks) by trying to look up keywords in the tumblr search to find posts on it, and discovering the shipping culture of red bull racing instead of any information I was looking for.
I was just trying to find info on what other people's experience is like. Not expecting to find a side of tumblr I never knew existed.
Common tumblr experience. I'd imagine it would be similar to any other caffeinated drink. If anyone knows more, feel free to share!
Hypersomia culture is constantly asking people for rides. Not necessarily because you can't drive, but because you're often randomly too tired to drive when you need to.
sleep disorder culture is the insane amount of sleep debt, if I force myself to stay awake even when it's for something fun or important I have to make up for it for weeks
also somehow I get like OVER sleeping sleep debt on top of not sleeping enough sleep debt, why is it that if I don't sleep for a minimum of 12 hours I have to make up for it but if I sleep for over 14 hours I also have to make up for it with more sleep??? hypersomnia hates me trying to function like a real person
Sleep disorders love making you suffer if you don't get an exact amount of sleep.
sleep disorder culture is struggling with sleeping way too much and not at the right time and instead of helping you people just get mad at you for not being awake for chores and tell you to use your phone less or go outside. Like gee, if only I had tried that already literally multiple times. /Sarcasm
Yep. They seem to think we haven't thought of the most obvious fixes to poor sleep. It's frustrating.
Is waking up from sleeping for 8-10 hours waking up having coffee and food not feeling like the coffee did anything at and feeling so sleepy that i could go back to sleep for hours and probably sleep for another 5 hours
Narcolepsy is painful, and no one ever tells you that. There’s never a narcoleptic character on TV in pain, needing to rest or be comforted or crying in frustration. It’s always just a person falling asleep while driving and it’s a big joke, haha, this person’s brain is messed up, how outrageously funny.
I can try to let go and not let it get to me, but it kinda does. Because that kind of stuff? Is exactly why when I was diagnosed, I still had friends say really mean things without realizing how mean it was.
Because the only way they’d ever seen narcolepsy portrayed was for laughs. So lol, it must not be that serious or hard or anything! It’s just a little disorder or something! Who knows! Lol falling asleep in soup!
It’s not like it’s actually really hard on the psyche and on your general happiness to be in that much physical pain daily and to have to rest so much even though you want to do things and have fun and you need to work for money and then you start getting nervous about events because you know after a few hours you have to sit down and rest. And even though it looks really rude, you HAVE TO rest your head on the table at a restaurant. You HAVE TO, because everything hurts and you’re delirious and heavy and you have hot flashes but your limbs hurt as if they’re frostbitten.
So cut us some slack, okay? It’s not easy. If you have a narcoleptic friend that has to rest when you’re out somewhere like the zoo, trying to have fun, be there for them. If they’re okay with it, hug them or rub their back a little. It helps me, because it calms the nerves, and narcolepsy can get much worse the more we stress, or if something scares or upsets us it can hit instantly and we have to shake our heads or pat our cheeks every few minutes to try to have a moment of clarity.
And it also just means the world to know that someone cares.
Sleep disorder culture is sleeping in real late and then planning okay maybe I'll try to get up earlier tomorrow and then somehow sleeping even later???
Like wtf it's 7pm...
Yep! The amount of times I sleep in later than I wanted to. It sucks.
MCAS + trying to figure out if I have narcolepsy (insomnia is already confirmed) culture is trying to look up why the only time you have slept well and felt rested in your life was on benzos, and finding people with narcolepsy talking about how xanax completely takes them out. Is it not supposed to do that?? It takes a bit longer for it to kick in with me (Or I wasn't given enough time) but I become essentially nonfunctional even on a low dose. It's hard to figure out how much impairment is normal with zero people to ask about it in my life.
Get that. If only there was a way to compare how you feel to a baseline feeling to realize "Wait. That's not normal?"
narcolepsy culture is having the most bizarrely convoluted and wild dreams or nightmares every night or even during naps
like okay brain no need to send me on a whole ass quest every single night multiple times a night can I just have one boring dream about like doing chores or something????? :/
Seriously. I get the strangest dreams, when I remember them. Though I do like the ones based in my interests a good deal.
Trying to figure out if this possible ablsims from a doctor ?
Is telling her about how i think i have DSPD and restless leg syndrome and how caffeine can also help me fall asleep do to ADHD
"and her just being like talk to your psychiatrist about your sleep disturbances"
I'm sorry what no I need you to order a sleep study and listen to me I just told you that it takes me 7 hours for my sleep meds to kick in and i fall asleep anywhere from 6am to 7am and i have to caffeine sometime to help fall asleep
She said did order one so I'm having my figures cross
It could be ableism, but it could also be her lacking the knowledge on how to connect you with a sleep specialist about that.
However, if she was dismissing it as sleep issues that everyone has or are medication side effects and not as something that could be a disorder, that's a whole other thing.
If you brought up the possibility of a sleep study and she fully dismissed it, definitely ableism.
Non 24 culture is thinking you have narcolepsy (since you keep passing out randomly even with enough sleep) but when you let yourself free run you magically start sleeping at most 8 hours a day (instead of 10+on average) while not wanting to oversleep, not falling asleep in the middle of things, and as a bonus your tummy issues are mostly gone.
Oh awesome! I know that there are definitely more challenges, and new ones from not forcing yourself to follow the same internal clock as everyone else, but I'm glad you had improvements!
