#sleepy in daytime

[sleepy-ace-dragon]

What you don't think about with narcolepsy is how much time is lost. I'm going to have a shorter life than other people, even if I live to the same age.

I sleep on average 12 hours a day. Let's say the average person sleeps 8 hours a day. 4 hour difference. Over a year, I've slept through 1,460 hours that a normal person hasn't. That's about 60 days, TWO MONTHS of my life that I lose EVERY YEAR. And not just two months of normal person time, that's two months of entirely awake time. Which means it's like three months of normal person days (awake 16 hours).

I barely have time for anything, even taking care of myself like eating or showering, outside of my full-time job. So much of my life gone. And it's not like I ever wake up rested and able to use my 12 hours awake to the fullest.

I've slept through so much of my life already and I'm only 25. This is, of course, just one of the many difficulties of living with narcolepsy, but I don't see people talking about it.

[sleepy-gryphon]

Narcolepsy is the dumbest chronic health condition from the outside. It's like. Aww, is baby eepy? Are you big eepy, eepy baby? Need a lil nip nap all the time?

Do meth about it, idiot.

[starlight-nocte]

when i think of sleeping,

i think of dying.

i think of oblivion,

of drowning in the Nile

after baking brown in the 

desert sun…

when i think of sleeping,

i am afraid

because sleep has been 

such a part of me,

has taken too much–

more than its due.

i have lost centuries to this thing,

this disease of

shut-eyed nothingness. 

in truth,

i don’t think it’s possible to be 

safe from sleep.

because this kind of sleep

sticks to your bones,

mouths at the ridges of your throat.

this kind of sleep

eats you alive.

 - Safe From Sleep, after Iman Mersal

[hajihiko]

out of curiosity, why is the alone at night rule there? is the place that they’re staying not secure, or is it more of an emotional support time deal?

Safety in numbers, and you're less likely to let imagination run wild when you have a solid support next to you

[arcane-clown]

Why is getting ready in the morning so difficult does anyone know anything about excessive daytime sleepiness / narcolepsy and have like tips and tricks for forcing the body to move when it literally cant but ive got stuff to do like literally just walk down the hall to go to the bathroom (and like i have more than just that to do but mornings suck so much)

[vampcubus]

victim to the midday nap once again

[affectionatepanda]

We're finally starting to look into my sleep issues. I'm waiting for my local hospital to have an oximeter available so we can see how my oxygen levels are while I sleep. If that has any weird results the next move will be a sleep study. Woooo progress (I'm so tired of tests)

[flamesignite]

Is he still sleepy though? Maybe you can hear his yawn.

[heartshattering]

Imagine if I'm able to sleep now. That would mean falling asleep at an almost 'normal' time. And possibly having energy in the morning. And being one step closer to normal. Wowowowowowowow

[varian-ross-horror-author]

It wasn't until I got assigned daily exercises that I learned that I do, in fact, experience PEM.

Thanks physical therapist, also fuck you (affectionate.)

I talked about fatigue/PEM with him, and he immediately flipped to "no I am not giving you any more exercises to do, you need to talk with your doctor about this."

As in, we're not meeting up again until I get an answer of if the current diagnosis "excessive daytime sleepiness" is what's actually going on, or do I have "mild" ME/CFS?

He asked how I did with things like grocery shopping, and I bitterly laughed in the poor guy's face.

I then explained that a big shopping trip is An Event, and basically wipes me out for the entire day.

Dude thought I was *oly* almost blind when he met me, now he knows just how much of A Mess I am. I'm multiple disabilities in a trench coat masquerading as a horror writer.

[ear-motif]

christ i hope in 50-100 yrs we look back on today's psychiatry like we look back on bloodletting and humors now. just. jesus those guys were trying but holy shit

[garglyswoof]

It's officially sleepy hours at work and here are the things I'm doing instead

- staring into the middle distance

- staring at the mug of tea I was hoping would wake me up

- staring at Google slides and the blinking cursor

[eleftherian]

Idiopathic Hypersomnia word web? Idk my dudes

[d3lusi0nal-d33r]

been so so tired lately. i wake up, scroll for a few hours, nap and repeat. very exhausting. hoping to get sleep study done soon :D

[biochemsitry]

Narcolepsy is objectively the funniest disorder. You're just. Sleepy all the time. The medical name for this is "excessive daytime sleepiness" (which btw really confused me when I read that "all people with narcolepsy have EDS" and thought it meant Ehlers Danlos Syndrome). And the doctor has to give you crack so you don't spontaneously fall asleep while, idk, mopping the floor or whatever (this legit happened to me once). And having ADHD on top of it is even funnier bc like, I feel like I could either take a 20 hr nap or run a marathon. And I get the same med for both and it somehow works???? (It's not actually crack, it's Adderall, but my friend likes to say I take crack.) And the reason for all of this is bc my stupid brain can't make the one chemical that keeps people awake. My brain actually just sucks at making chemicals in general (I have ADHD and am mentally ill so things like serotonin and dopamine are also in short supply), but why this one in particular???

[2percentsugar]

my life would be markedly better if it were possible to be nocturnal without destroying my social and work lives