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

@billyjoebowers I hear ya. Before I was treated for #narcolepsy, I’d bake in my car in random parking lots because of sleep attacks. Last night I lucked out and it was a cool evening. #CarCamping #roadtrip

Turns out the reason I've been too tired to get any work done these past two weeks was just that my room was too hot. Dammit.

Having #narcolepsy is so fucking exhausting

What if there was a way to stop #narcolepsy in its tracks before it fully manifested in a person? This article explores that possibility.

https://jamanetwork.com/journals/jama/fullarticle/2806848?guestAccessKey=c648f131-7746-4e78-84c7-e59c8e8779ab&utm_source=twitter&utm_medium=social_jama&utm_term=10542024077&utm_campaign=article_alert&linkId=222306772

Nice neat list of inofrmation about #Narcolepsy

#Microsleep - this affects me often especially when sick or times of stress, bad schedules from the outside world disrupting my need for daily sleep and so on. It can be dangerous for me in public.

https://www.helpguide.org/articles/sleep/narcolepsy.htm#:~:text=Microsleep%20is%20a%20very%20brief,heart%20rate%2C%20or%20intense%20alertness.

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.

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

I'm attending the #Hypersomnia Foundation conference in #Indianapolis, raising awareness about #narcolepsy. Lots of interested attendees.

When you're having a #Narcolepsy flare for days and finally get a deep nap and wake up slow and snuggly warm it's the most delicious and best medicine for your mental health ever.

Throw whatever you will at me, and I'll wrestle it to the ground. I'll bite its face.

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

What exactly IS #Narcolepsy ?

(It will ask if you are a provider, click yes. It won't ask anything further.)

Tp concisely get fast info and clear up the misconceptions that keep resulting in the abuse of people during episodes. (Mine started in childhood and sped up with each illness)

https://www.narcolepsylink.com/screening-and-diagnosis/recognizing-symptoms/?utm_source=google&utm_medium=cpc&utm_campaign=USA_GO_SEM_NB_PH-NL-Cataplexy-General-STANDARD&utm_content=NB_PH_Cataplexy_Core&utm_term=cataplexy&gclid=CjwKCAjw1MajBhAcEiwAagW9MSttO5r4XLzJpsct2LbH7u_KRPidquB7hnRMPt5fQATC3RudQaZSDRoCU0EQAvD_BwE&gclsrc=aw.ds

JAMA Patient Page

What Is #Narcolepsy ?

📌Narcolepsy causes sleepiness not due to sleep deprivation, poor sleep quality, or sleep apnea.

📌Narcolepsy type 1 is caused by damage to a certain part of the brain (the hypothalamus), resulting in decreased production of orexin, a hormone that helps maintain wakefulness.

📌Narcolepsy type 2 does not have low levels of orexin, and its cause is unknown.

Writing with narcolepsy. How i cope with being asleep more than I'm awake.

https://medium.com/@wildagreenbough/the-narcoleptic-writer-515dba599602

#writerslife #narcolepsy #fictionwriting #disability #dreaming

Provocative paper on epigenetic (but still autoimmune?) mechanism for type 1 #narcolepsy -- big implications, but still hard to connect the dots

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

Why are people #sleeping 😤 hey ola, get awake.

They are steeling your car!!! 🙄 Naja, #narcolepsy has few positive aspects. 🤭

However. Good Morning everybody 🌈🦄❤️

Why are people #sleeping 😤 hey ola, get awake.

They are steeling your car!!! 🙄 Naja, #narcolepsy has few positive aspects. 🤭

However. Good Morning everybody 🌈🦄❤️

@somnulus @KatyElphinstone I’m lucky that my #narcolepsy isn’t as severe and has responded well to Sunosi. This med has definitely changed my life for the better.