I have narcolepsy. I don't like the dictionary's definition, so I fixed it.
|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 the chemical hypocretin in your brain's hypothalamus, which keeps your sleep cycles and alertness in check, along with appetite and muscle tone. Narcolepsy is described as “sudden and irresistible urges to sleep”. But the chemicals and the sleep cycles and the definitions, they don’t matter to me. It's all nonsense, 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, and 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 twenty 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, just a phase”.
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 leather seat is. It’s sleeping until three and getting yelled at, it’s staying up until three and getting yelled at. It's uncomfortable plastic tubes forcing air down your throat. It's failed surgeries and weeks off. It's worrying whether you've got some new sort of mystery disease. It's staying up late researching anything and everything to understand just what's wrong with you. It's being scared when your arms don't work right in the morning. It's being late to school every single day and having to make 'accomodations' with the principal. It's deciding between sleeping well and sleeping comfortably. It's people saying "I'm tired" and following up with apologies, like they offended me. It's eleven years of frustration and begging and wondering if there's something wrong with your head. It's stress and tears and desperation for it to just stop, please.
It's telling everyone that will listen when you're finally diagnosed. It's real. I'm not crazy, I never was. I told you so! It's telling your gym teacher "just in case he needs to know", but really you're just happy to say the words and he's the first person you saw.
Most of all, it's really, genuinely, deabilitatingly tiring.