#worldnarcolepsyday

[xxhypersomnia]

Today and everyday, I am representing those with the rare disorder - Idiopathic Hypersomnia.

IH causes one to be very sleepy during the day regardless of the amount of sleep received. Unfortunately, we have yet to figure out what causes IH or how to treat it. I have participated in numerous medical trials, taken trial medications in every form imaginable, and I have even been injured by medical tests gone wrong (induced sleep paralysis = broken toe). I have spent countless weekends in a hospital bed, forced to stay awake for 25+ hours in order to conduct testing so perhaps others can find relief.

How does it affect my life?

I’m exhausted all the time. I honestly don’t know what “being refreshed” feels like. I haven’t felt that since I was a child. I sometimes sleep whole days away and it affects my relationships. I can’t drink with friends because the alcohol will make me fall asleep at the bar. I have been bruised from too much time in my bed or couch. It makes it extremely hard to stay motivated at the gym. I have fallen asleep on a treadmill and while recieving tattoos. Worst of all, it affects my memory (along with another neurological disorder). Sleep is so important to our brains, it’s a time for it to recover. And my particular version of IH causes my brain to float in light sleep, hardly ever reaching REM. So my brain is never healing. I forget things, I get anxious that I’m forgetting things, and I have a hard time formulating words that I want. It hurts to know I’m smart but can’t always present myself that way.

I could go on and on about the affects it has on me, but honestly the hardest part is people who don’t think you have a disorder. “I’m tired a lot too!”

I will always and forever support invisible disabilities. It is a backwards way of thinking to think disability means wheelchair, or some other physical ailment. Just because you can’t see a disorder, doesn’t mean it’s any less real. “You’re too young to be forgetting things..” that’s one I hear A LOT. Yea, thanks for the reminder than I’m on my way to early memory loss way before my time. I can’t even remember vacations with my family. Memories that I know I love but can’t reach.

Be kind, be cautious with your words, be supportive even if you don’t know the whole story, don’t deny someone else’s reality just because it’s different than your own.

To all my loves with narcolepsy or any other invisible disability, I see you ♥️

[sleepy-spoonie]

Today is World Narcolepsy Day 💤

I sometimes feel my journey with Narcolepsy can be boiled down to one sentence: I've always been sleepy.

For the majority of my adult life I've suffered from sleep attacks; moments of overwhelming sleepiness that lead me to nap without much of a warning. They can, and do, happen at any time, regardless of what I'm doing: watching TV, running errands, doing chores, talking, eating, driving. They can be annoying, inconvenient, and sometimes scary.

I was first tested for Narcolepsy in 2015, not long after I fell asleep whilst actively helping new roommates move in. My results were inconclusive, and I moved on. By early 2021, I couldn't get through a day without a lunch-break nap. I spent most of my weekends in bed, and was sleeping upwards of 11 hours at a time. When I was re-tested, just after I got married, I was diagnosed with Narcolepsy (without cataplexy). My sleep latency (time it takes to fall asleep) was 5 minutes.

I trialed several medications, some that didn't work, and some that gave me adverse reactions. My sleep attacks got worse. I had to ask for accommodations at work. By early 2022, I had to stop driving. Shortly after that, I was forced to quit my full-time job.

I am currently on a medication that works for me. It doesn't earn me better sleep, or stop me from needing to nap, but it undoubtedly makes me feel a little bit more human. I still struggle with sleep attacks, but instead of several times a day, I may experience them a few times a week. The attacks can sometimes still be overwhelming, but I've mostly learned what brings them on and can recognize the signs. And, I can drive again.

Narcolepsy is a learning curve. It affects everyone differently, and treatments vary. The medications and lifestyle changes that work for one person may not work for another. Advocate for yourself. Only you know what you need to live comfortably and safely with narcolepsy.

[fucknarcolepsy]

22.09.2021

World Narcolepsy Day

[newhologram]

Today is #WorldNarcolepsyDay. I was officially diagnosed with #narcolepsy (w/o cataplexy) in 2013. Narcolepsy is challenging bc we don’t get restorative sleep due to the brain not producing hypocretin. Imagine you stayed up for 3 days straight: that’s how tired narcoleptics are no matter how much we actually sleep. What causes flare ups? Stress, weather change (especially HOT weather), other illness, even PMS can relapse all of my symptoms. No, I don’t “fall asleep randomly”—Not all narcoleptics experience this. It’s not like it is in the movies. It’s a very deep and persistent exhaustion with cognitive dysfunction, #brainfog and more issues. This is why it’s SUPER important for narcoleptics to have scheduled naptimes, otherwise we can literally feel energy-hungover to the point of not being able to function. #SleepParalysis and hallucinations are very common and more frequent in N patients. #hypnagogia #hypnagogichallucinations I used to experience this nearly every day for 1-4 hours, even as a tween. It was scary, I didn’t know what was wrong with me, why I was seeing and hearing monsters while being paralyzed in my bed. #Cannabis has helped me reduce these episodes to just once every few months (except in summer, ugh!) It took 10 years of telling doctors for one of them to even mention narcolepsy. Like most people, I thought N was “randomly falling asleep” when it’s actually a complex neurological disability. After going through a traumatic diagnoses process with a neurologist who only wanted to give me stimulants, I did research and made tons of changes in order to adapt to this illness. It was incredibly rough and the depression was/is brutal during relapses, but I learned a lot. I have videos about my experience with narcolepsy on my YT (link in bio) so make sure to check it out! #narcoleptic #chronicillness #spoonie #invisibleillness #disability #disabledandproud #sleepstudy #sleepdisorder #disabledandcute https://www.instagram.com/p/CFcaNXpDQNl/?igshid=j16tef59y2bb

[hello-sleepy-kitty]

A drawing I did in celebration of World Narcolepsy Day September 22nd 2020. Find me on DeviantArt at DreaminginstarlightX. #worldnarcolepsyday #worldnarcolepsyday2020 #DreaminginstarlightX #myartwork🎨 #sleepylife https://www.instagram.com/p/CD0uTSvD7gg/?igshid=1wtjf5ub91ei4

[sleepyamerican]

"Films can't change the society; they can simply open the space for the discussion which can lead to social change and can start new forms of social activism." Joshua Oppenheimer notalone

[hey-its-kay-streams]

RT @tinyvirg0: For #WorldNarcolepsyDay I’m sharing my experience in a thread: In high school, I was pretty tired all the time, but I was also depressed, so my doctor at the time started m on antidepressants and iron supplements for borderline anemia. I was diagnosed with ADHD in my early 20s http://twitter.com/hkpstreams/status/1440714760396308481

[perspectief1]

It’s Almost World Narcolepsy Day, Are You Ready?

The article It’s Almost World Narcolepsy Day, Are You Ready? Read more on: https://www.perspectief.org

The week leading up to World Narcolepsy Day has quickly become one of the most surreal weeks of my life! Seeing posts, articles, videos and radio segments from around the globe honoring World Narcolepsy Day, wow!

World Narcolepsy Day Activities:

I will travel to Vancouver, Canada tomorrow to celebrate World Narcolepsy Day at World Sleep 2019, an international congress on sleep medicine. Join myself and Project Sleep virtually or in-person, here are some opportunities:

World Narcolepsy Day Pronouncement:

Tune in on Sunday, Sept. 22, 2019 at 12:00 noon ET for the World Narcolepsy Day Pronouncement – broadcasting via Facebook Live. Narcolepsy and idiopathic hypersomnia experts and community leaders gathered at World Sleep 2019 will discuss the importance of World Narcolepsy Day, raising awareness and advancing research to improve outcomes for people with narcolepsy and IH around the world.

To watch the live broadcast, simply go to Project Sleep’s Facebook page on Sunday 9/22 at 12noon ET and as soon as we “go live,” the video should show up in our newsfeed!

World Narcolepsy Day #NChat on Twitter

#Nchat is a monthly Twitter conversation that connects people with narcolepsy worldwide. Join in this special #WorldNarcolepsyDay #Nchat on Sunday, Sept. 22nd at 5:00 p.m. ET!

If you’re in the Vancouver area or attending World Sleep 2019, join us in-person for these opportunities:

World Narcolepsy Day “Selfie-Station” on Sunday, Sept. 22, 2019 from 10:00 a.m. – 4:00 p.m. PT in the Public Foyer, Vancouver Convention Center

Julie Flygare’s Author Table on Sunday, Sept. 22, 2019 from 12:15 – 12:45 p.m. PT in the Public Foyer, Vancouver Convention Center

Inaugural World Narcolepsy Day Forum on Sunday, Sept. 22, 2019 from 5:30 – 6:30 p.m. PT in Room 109, Vancouver Convention Center

Speakers: Matt O’Neill, Narcolepsy UK, Julie Flygare, JD, Project Sleep, Claire Crisp, Wake Up Narcolepsy, Eveline Honig, MD, Narcolepsy Network, Rebecca King, Hypersomnia Foundation, Mark Patterson, MD, Day4Naps

Session description: To mark the inaugural World Narcolepsy Day, Sept 22, 2019, leaders of narcolepsy non-profit patient organizations will share programmatic highlights, best practices and key insights from the front lines. Clinicians, researchers and patient community members will learn about the latest resources from non-profit sector while also fostering new ideas for working together across disciplines to improve outcomes for people with narcolepsy across the world.

GLOBAL begins with LOCAL: 

Awareness begins with one person reaching out to another person in their community. This is why Project Sleep has designed a beautiful World Narcolepsy Day webpage with resources and graphics to help you raise your voice in your community. 

Quick Ways to Support:

Add the Facebook Frame: Show support on Facebook by adding the World Narcolepsy Day frame to your profile photo. ADD FRAME! 

Give Back: Start a FB fundraiser or make a World Narcolepsy Day gift to Project Sleep

Share on Twitter: We’ve prepared a simple tweet for you to share. TWEET IT!

Follow #WorldNarcolepsyDay on Instagram: Like and comment on fellow advocates posts from around the world! FOLLOW ON IG!

Thank you for your support, this is totally surreal. See you from Vancouver soon! <3

    from Julie Flygare http://julieflygare.com/its-almost-world-narcolepsy-day-are-you-ready/

from https://www.perspectief.org/its-almost-world-narcolepsy-day-are-you-ready/

[fucknarcolepsy]

World Narcolepsy Day 22.O9.2O22

[hello-sleepy-kitty]

A drawing/poster that I made celebrating and raising awareness of World Narcolepsy Day September 22nd 2020. #worldnarcolepsyday #DreaminginstarlightX #myart #raisingawareness https://www.instagram.com/p/CDzghw3j522/?igshid=97j41u3hqhfy

[hello-sleepy-kitty]

World Narcolepsy Day kawaii journal page!~ #worldnarcolepsyday2019 #worldnarcolepsyday #narcolepsy #journalingformentalhealth #kawaiijournaling #journaling #projectsleep https://www.instagram.com/p/B2yAQFpHS_R/?igshid=5h4dd3l6dubg

[hello-sleepy-kitty]

Raising awareness for World Narcolepsy Day! Celebrating at one of my favorite places. The Tropical Smoothie cafe even has options to add supplements to your smoothies! It's a great way to get a boost to your day if you're too sleepy. #worldnarcolepsyday2019 #worldnarcolepsyday #narcolepsy #projectsleep #tropicalsmoothiecafe (at Tropical Smoothie Cafe) https://www.instagram.com/p/B2u-z-fHDgb/?igshid=1xkn84sbyxbbb

[hello-sleepy-kitty]

Raising awareness for World Narcolepsy Day from Oklahoma!~ #worldnarcolepsyday #worldnarcolepsyday2019 #projectsleep #narcolepsy https://www.instagram.com/p/B2sbEVKHjO0/?igshid=xu87uyv68iru

[hello-sleepy-kitty]

Raising awareness for World Narcolepsy Day from Oklahoma!~ #worldnarcolepsyday2019 #projectsleep #narcolepsy #worldnarcolepsyday https://www.instagram.com/p/B2saK_xHGAH/?igshid=det5j6q6rdfq

[hello-sleepy-kitty]

World Narcolepsy Day comic sept 22nd 2019! If you like my work, you can find me on Deviantart~ My username is DreaminginStarlight