I still have my moments of loneliness because I truly believe that unless you have this disorder you will never – ever – understand how it can make you feel.I know people look at me awkwardly when I say I’m tired, and I know I’m a little bitter when someone says to me “Ugh, I didn’t sleep at all last night. I’m 26 years old, I live in Boston Massachusetts, and I have narcolepsy.I had to shoot past the moon and into the universe in the HOPE I would MAYBE land on a star, even just a dwarf one.
(Pain stimuli response: take your index finger, bend it, place your knuckle on top of your sternum, and rub.
It hurts even if you don’t add pressure, but imagine a 250lb man doing that to you as hard as he can.) My mom and I went back and forth from doctors office to doctors office and no one could figure out what was going on with me. Up until then, I had been an honors student and on the JV softball team, as well as taking part in tons of other after school activities. My mother was a complete wreck and wouldn’t let me out of her sight, or even out of the house, out of fear that I would inevitably come crashing down to my doom.
I could sleep 16 hours and still need 3 naps during the day to feel okay.
I felt like an idiot, a lazy sack of nothing useful to nobody, someone who was never going to be able to do anything with my life because I would never be awake enough to do it.
I had your typical sleep study: in bed at 10pm, sleep until 8am.
Day two consisted of 4 scheduled naps for 10am-1030am, 12pm-1230pm, 2pm-230pm, and 4pm-430pm.You’re not lazy, you’re not broken, you’re not useless – you have a disorder you have no control over and IT is what is doing this to you.” I felt renewed, reborn.To go your whole life thinking you’re being silly or overdramatic and then be told that what you’re going through is a real thing and there are even tons of other people going through it too is like a warm blanket in the middle of the coldest day of the year. I never want another person to feel as alone as I did.By the time I had my second nap I was dreaming before I was even asleep, but sleep came very quickly.After my second nap the tech told me my study was complete, there was no way they would need me to do the final two nap cycles.I would spend sleepless nights playing The Sims, or reading, or starring up at my ceiling and trying to cry myself to sleep, but just silently soaking my pillow with my tears instead.