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 ♥️

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.

22.09.2021