Narcolepsy

I have narcolepsy. Here's what it's like.

How does it feel to have narcolepsy?

I was asked this today. To be honest, I didn’t know how to answer. How does it feel to be awake, alert? Normal? I answered with sarcasm, to avoid the question, I guess. It’s tiring. It’s true, as I write this I’m very sleepy, but I suppose there’s not a time when I’m not. But tiring doesn’t even begin to describe it.

Narcolepsy is a sleep disorder, caused by a lack of chemicals in your brain that keep your sleep cycles and alertness in check. It’s described as “sudden and irresistible urges to sleep”. But the chemicals and the sleep cycles and the definitions, they don’t matter to me. They’re just words and formulas. Here’s what narcolepsy is.

It’s an alarm clock, but instead of waking you up, it puts you to sleep, but you can’t see the numbers on the screen. It’s your friends making fun of your not eating at lunch, when your high dose of stimulant can barely keep you awake, but can suppress your appetite for days on end. It’s not going to movies with your friends because you might fall asleep if the movie is too boring, and you don’t want to put them in that situation.

It’s nine sleep studies and ten doctors and four false diagnosis, plenty of gym teachers that just shake their heads and say “Excuses, excuses”.  It’s a doctor telling you for twelve years of your life to “just ignore it, it’s fatigue, exercise more”.

It’s explaining to your history teacher the disorder when you fall asleep in his class twice. It’s not doing homework because you’re seeing double and the screen looks fuzzy. It’s lectures from the Spanish teacher over participation, it’s not being able to tell him his class bores you to unconsciousness.

It’s money spent and money wasted on pills and experiments and tests and scans, it’s the loudest music you can possibly play to keep your eyes from getting heavy. It’s anxiety in public- what if I fall asleep and something happens? It’s not driving because you’re scared of how very comfortable that chair is. It’s sleeping until three and getting yelled at, it’s staying up until three and getting yelled at-

It’s tiring.

I’m tired.

Author's Note

So. This year, a couple months back, I was diagnosed with narcolepsy. I also have sleep apnea, I'll probably write another of these on it. But, uh, I don't like how narcolepsy is described in books and prescriptions, so I fixed it. Despite how awful it is sometimes, it's also a source of pride. I got through untreated... exhaustion, for 12 years. That's pretty powerful.
Have a good day y'all. <3