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
