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Bea

@narcowotsit

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Type1 Narcoleptic since age 7. Here to share my experiences and advocate for others.
Also a bellydancer 😎@beatriceflowers

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Yep, I needed notes for this! This is the amazing news I wanted to talk about that everyone else already has. Late but still relevent. Please check out @project_sleep for more narcolepsy shizniz

#narcolepsy #narcolepsyawareness #oveporexton #chronicillnessawareness by @narcowotsit

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2 months ago

There has been an amazing update in Narcolepsy medication. Historical actually but I’m so bad at this! I will make the thing about the update shortly when I get my sh*t together. #narcolepsy #narcolepsyawareness by @narcowotsit

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2 months ago

I’ve had Type 1 narcolepsy since I was 7. There are many days with narcolepsy (for me) where no matter what it’s just not possible to function. I just have to be kind to myself and accept that this is just how it is. #livingwithnarcolepsy #chronicillnessawareness #narcolepsynotalone by @narcowotsit

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6 months ago

Cataplexy episode happened half way up the stairs, just managed to make it to top where I managed to turn over so I didn’t smash my face on every step on the way down, thought I’d only slide a few steps but went Weeeeeeeee and slid all the way to the bottom, laid there for about 20 mins unable to move or speak. Wasn’t my favourite time spent. Then got up and immediately proceeded back up the stairs like Incy Wincy fuckin’ spider. Unharmed, fine. Might have a bruised butt or something. All good! Sadly there isn’t much work for accidental stunt performers . So F*CK CATAPLEXY! 🖕
#cataplexy #narcolepsy #livingwithnarcolepsy #neurology #accidentalstuntperson by @narcowotsit

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7 months ago

Narcolepsy isn’t just a sleep disorder. While Orexin does control sleep wake regulation, the implications of how that affects metabolism in narcolepsy go much further than just sleep disorder type symptoms. Type 1 Narcolepsy could accurately be described as a neuro-metabolic disorder of autoimmune origin. At a cellular level it affects the core of how the body uses energy. This isn’t widely talked about by doctors or specialists as the research has predominantly focused on sleep wake regulation.
‼️Please note. I’m lifelong Type 1 Narcoleptic with an interest in neurobiology. I am not a professional nor a scientist. This information should not used as health advice. Please refer to your doctor for advice.

#narcolepsy #orexin #metabolicdisorder #neuroscience #chronicillnessawareness by @narcowotsit

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8 months ago

I lost count of the times I nearly drowned in different types of water. Some were horrifying beyond imagination, while some are just not even that notable. “What? Another boring near swimming pool drowning? Yawn” Feel free to ask questions. I’m thankfully alive and an open book.

#Narcolepsy #Cataplexy #NearDrowning #LifeWithNarcolepsy #chronicillnessawareness by @narcowotsit

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8 months ago

Why I haven’t posted any videos of myself Jusf talking at the camera like everyone else does on Insta? Basically it’s a confidence thing and I’m working on it. Leave me alone. 😊🙃🙃🙃 by @narcowotsit

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a year ago

Lack of awareness causes people with narcolepsy to face stigma, in school, work, and personal and social relationships, leading to lack of opportunities, feelings of isolation, low self esteem, and mental health issues. Advocate for narcolepsy awareness by sharing.

#narcolepsy #narcolepsyawareness #narcolepsynotalone #chronicillnessawareness by @narcowotsit

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a year ago

PS. I still love My Own Private Idaho.
However… Please sign this petition and stand with the narcolepsy community to call for representation that is accurate and reflective of real-life symptoms and stories. Your signature can help change how millions see this condition — and those who live with it. GO TO MY STORY TO FIND THE LINK.

#narcolepsy #narcolepsyawareness #projectsleep #narcolepsyadvocacy #chronicillnessawareness @remrunner @project_sleep by @narcowotsit

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a year ago

Very sleepy and full of horrible cold but still 🤘😎 by @narcowotsit

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a year ago

Misconceptions about Narcolepsy. Part 2

What people think it is:
Narcolepsy is mental or psychological.
What it really is: A neurological autoimmune condition — not psychological or behavioural.

What people think:
it’s always visible or dramatic.
The reality: Many symptoms are invisible — brain fog, emotional blurring, automatic behaviour and chronic exhaustion. Even minor cataplexy might not be immediately visible to the untrained eye.

What people think:
You wouldn’t be tired if you went to bed early and had a good nights sleep.
The reality: Nighttime sleep is often disrupted but a person with narcolepsy can fall asleep during the day regardless of nighttime sleep because their sleep-wake regulating system does not function properly.

What people think: You’re probably faking it.
The reality: FIGHT ME!

##type1narcolepsy
#narcolepsy #cataplexy #narcolepsyawareness #narcolepsynotalone #chronicillnessawareness #narcolepsyadvocate #orexin by @narcowotsit

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a year ago

Cataplexy is a sudden, temporary loss of muscle control. For me, it begins with a feeling of weakness in the facial muscles, sometimes buckling knees and an overwhelming sense that I may go wibble-splat onto the floor at any second.

A mild episode may affect the eyes, face, neck, and speech, while a full-body episode is a complete collapse during which I cannot move or speak but remain fully conscious for up to 15–20 minutes.

Actually, I can sometimes wiggle my fingers and toes so I can swear with my hands and sort of attempt very slurred profanity 👍

Without medication, I experience this multiple times a day and at my worst I can’t even walk across a room without collapsing. With medication, I’m able to dance. 🕺 👍

I’ve experienced cataplexy in various bodies of water so many times that some of my near-drowning moments aren’t even notable.

Cataplexy can be triggered by strong emotions such as laughter, anger, sadness, elation, or surprise—or even just by recalling something emotional. I get super cataplexy, also known as status cataplecticus, so my main trigger is simply existing 🙃 #funtimes

#type1narcolepsy #cataplexy #statuscataplecticus #narcolepsy #narcolepsynotalone #narcolepsyawareness #chronicillnessawareness #neurology by @narcowotsit

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a year ago