So last week I rediscovered that I love folding via origami, it really helps me calm down.
To top it off at the end, my body folded a couple times #cataplexy #narcolepsy

It's been a while since I've been able to be relaxed & tired enough to trigger a #cataplexy episode, but I managed to be able to do so yesterday. Ended up not being able to #read my #book. The old classic combo of lying in bed under a weighted blanket, with my #plush seal, Chortle, in my arms, who's also wrapped in an afghan, & rain pouring hard outside. Plus my cat settling in my bed, touching my back, & poor sleep=cataplexy. I kept losing muscle tone in my hands, lol. I fell asleep instead.

I try to keep shenanigans with sleep to a minimum. I live with #N24, #cataplexy w/o narcolepsy, and #hypersomnia. But I still do things against wherever my free-running circadian rhythm is, because life just requires that sometimes for better or worse. Yesterday I finished a book called "Our Woman in Moscow". Today I stayed up late for errands. Sleep has been a bit shit this week & my body punishes me with the muscles aches you get after exercise, but you feel it all over, esp. in joints.

I keep multiple locks on doors because of sleep walking and sleep talking. I've been found fumbling with locks and car keys in my hand. Whether I would be capable of actually unlocking or driving, I don't know but wandering about is entirely possible. I take the knobs off the stove after cooking (usually, sometimes I forget) and keep an open floor plan in case of seizures or #Cataplexy .

We #medical professionals must do a better job at diagnosing patients with #sleep problems, especially #narcolepsy and #cataplexy. Diagnostic delays of 5+ years have a devastating impact on one's life.
https://www.washingtonpost.com/wellness/2023/06/10/sleep-problems-medical-mysteries/

It took two weeks of being with the pubic for me to get sick. That's all. Two weeks.

Bunch of dirty birds.

So now with my #Narcolepsy fully flared I get to go in public and risk abuse by strangers because every time I have #Cataplexy one of you weirdo beat the shit out of me.

Did I mention that at the psyche hospital the psyche nurses were so uneducated they mixed up #Cataplexy with #Catatonia and forcibly shot me with medication and strapped me down calling me anxious and paranoid after I questioned their knowledge?

Yep, never challenge a narcissist with power over your body. Then the guards dragged my limp body down a hall to strap me down because I couldn't walk.

#psychology

How a couple of "jobs" that require you to not leave your seat can cause so much stress you get partial #Cataplexy in your right eye and have to go to sleep after never fails to surprise and disappoint me. I have so much strength and can move boxes twice my size but stress and illness make my body turn into a dishrag.

#Narcolepsy #ChronicIllness

I have #Narcolepsy with #Cataplexy and had an episode in the car where the officer mocked me and used the cars movements to toss me around in the SUV, knew to have first responders on hand when we arrived at the canopy yet said I refused to walk. I COULND'T.

Women can not self defend against assaults.

When my husband broke my eye socket and nose, troopers tried to arrest me until rape and domestic violence groups intervened. That's just one example of trauma.

This world is unsafe. #PTSD

Those in the psych and med feilds don't like it when you question them or make your own decisions.

I got forcibly medicated and called "anxious and paranoid" during a #Cataplexy episode in a psych stay for grief. I dared tell her that was incorrect and asked "Do you even KNOW what #Narcolepsy IS?!" once I regained control of my limbs and mouth and refused to go in the strap-down room.

#Psychology #ThisMedicalNicheIsFucked

Woke up with my neck and #TMJ screaming. Just a slight misalignment in your facial bones, spine, or skull and one week of rain you get one week of a nonstop headache with these kinds of symptoms. We've had almost three. Using a car ride to toss someone in #Cataplexy around like a bag of rocks to trigger it doesn't help.

#TuberousSclerosis #Tumors #Scoliosis

For those patients with #narcolepsy and #cataplexy this is a major announcement! A once-nightly version of sodium #oxybate has finally been approved. #Avadel
https://investors.avadel.com/news-releases/news-release-details/avadel-pharmaceuticals-announces-final-fda-approval-lumryztm

I can find lots of info on *what* it is, but none on *why*.

I'm interested, as sometimes, when I'm scared, I can go suddenly floppy and 'sleepy' - puzzling.

It especially happens before e.g. a job interview or an exam. I start yawning my head off and my eyes go all droopy - I feel like I could just curl up on a cushion and zzz...

While I know this isn't the same thing as actual sleep disorder, I'm interested in links/causes 🤔

#Narcolepsy #Cataplexy

#AskingAutistics (and others)

Subject: Narcolepsy and/or falling asleep suddenly and in odd situations.

Does anyone get sudden onset of sleep and, if so, have you ever linked it to certain situations, states of mind, and/or emotions?

#Narcolepsy #Cataplexy

@oooh_scary @maddramaqueen The BMV in this state won’t take your license for pretty much anything you don’t self report.

Don’t know how it would be to get it back though. Seizures are pretty much the only thing they fuck with. But I hear that it is super frustrating.

I have #cataplexy with associated #narcolepsy. It generally hits at moments of high emotional states, oddly.

I don’t drive because I’m a reasonable fucking adult. The state can go fuck itself.

Last night I was unable to sleep until about 1 am. I have #YOPD and with that #Cataplexy and #Narcolepsy. A whole bag of crappy. 😹

Hoping that competition leads to a price reduction in this #medication, an essential one for treating those with #narcolepsy and #cataplexy. Currently #Xyrem (sodium #oxybate) costs over $12,000 a month!!

https://www.hikma.com/newsroom/article-i6081-hikma-launches-authorized-generic-of-xyrem-sodium-oxybate-in-the-us/

If anyone here is interested in #narcolepsy, #cataplexy, #sleep, #IdiopathicHypersomnia,
#pediatric medicine, please let me know. Would love to connect. Thanks.

Few details about me: leading #sleep and #narcolepsy advocate (N1 - narcolepsy with #cataplexy ), father of three (sole custody of two), partner to a rural mental health professional (LPC-MHSP), and a blue dot in rural TN. #worldsstrongestpersonhavingnarcolepsywithcataplexy #SleepPeeps

As I am new to this platform, I am seeking others with an interest in #pediatric #pediatrician #narcolepsy #cataplexy #sleep. Thanks!