Let's Talk about My Sleep Disorder

Friday, September 14, 2018

I am 16 years old, & I fall asleep in the shower before school nearly every day. My show choir loads onto a bus for a 15-hour ride from my Ohio hometown to Florida before a cruise to the Bahamas; I sleep the entire way, waking up only at rest stops when prompted.

I am 18 years old & a freshman at Ohio University, a three-hour drive from my home. Every time I make the trip home, I have to stop to take a quick nap in my car, usually in a remote corner of a rest stop or, preferably, in the parking lot of someplace safe, like a church. My "drive" takes a total of four hours, nearly every time.

I am 20 years old & living in a sorority house with the immediate past president, a friend from high school, who wakes up around 6am every day to go for a run; her alarms never wake me up. Her primary complaint about living with me is that I sleep too much. I do.

I am 22 years old & have transferred schools. In my super-senior year, I need fewer credits than in semesters past, so I haven't scheduled my first class until 1pm every day. I think it will give me more time to do my reporting for the student newspaper, more time for errands & life, but instead, I sleep until noon... almost every day.

I am 25 years old & my grandmother & I are going on a trip together to Baltimore. "We're not coming home in the middle of the day to take a nap or anything," she tells me. "I know you do that sometimes - but I'll sleep when I'm dead." I drink four iced coffees every day to try to stay awake... & in the end, we still come home to nap.

I am 26 years old & dating a Coast Guardsman who wakes up before dawn every workday. On weekends, he tries to wake me up around 9am so that we can make the most of the day, have adventures. Every time I don't get out of bed, I hear him sigh; I hear the annoyance in his voice, the belief that I am lazy, & I feel terrible about it - but still, I fall back to sleep.

I am 30 years old, & although I work remotely, I sometimes work in my old office & claim their library space as my own, like I've done today - my 30th birthday. Around 2pm, I feel like I can't keep my eyes open; I go home to take a nap before my happy hour birthday party, which is when I learn that I slept through an office birthday party my sort-of-coworkers planned for me that afternoon.

I am 32 years old, & I have been having a bout of severe insomnia, something that's never happened to me before. I am so exhausted that I feel drunk, that I am afraid to drive, that I can barely hold conversations; I get the date of my doctor's appointment wrong & start sobbing at the front desk. My GP gives me light sleeping pills & tells me about "sleep hygiene" & sends me off to get better. Soon, I start to sleep again - & go right back to sleeping way, way too much.

I am 34 years old & finally decide to find a sleep specialist who will take me seriously. I am given a next-day appointment at the Cleveland Clinic.

As the neurologist asks me questions about my sleep habits, I see his eyes grow bright with knowledge, like he knows exactly what is going on. He seems excited, & I am, too, presumably not because of what he's about to tell me but because he is about to tell me something. He has been able to put together my puzzle.

I am diagnosed with delayed sleep phase syndrome, which essentially means I am nocturnal. The neurologist says it's not uncommon, but that people with this syndrome typically adjust their lives to work atypical jobs - artists, writers, service industry folks, people who can work after dark. He says people with delayed sleep phase syndrome can lead very normal lives; their bodies simply prefer to be awake at night.

But that doesn't explain the constant exhaustion, he says. People with delayed sleep phase syndrome sleep at irregular times, but in regular amounts.

More importantly, then, I am also diagnosed with idiopathic hypersomnia, a rare form of narcolepsy. "Idiopathic" means its existence has no known cause; "hypersomnia" indicates excessive tiredness without relief. In other words, I sleep & sleep & sleep, but I never feel any more rested & refreshed. If allowed to do so, I would sleep & sleep & sleep for God-knows-how-long. It goes in indeterminable phases; sometimes I am fine & sleep "normally," while other times I sleep for 14 hours a day.

Yes. That is is exactly.

I cry with relief. I knew I wasn't lazy.

To be sure - although he says he's already pretty sure - my neurologist books me for a 24-hour sleep test, not the regular kind for people with sleep apnea. Most sleep testing facilities run from, say, 10pm until 7am; for people with severe sleep disorders, he says, more testing is needed, & so my test will take place at a luxury hotel within the hospital system. It takes place on a Thursday evening at the end of September, & it will run from 11pm until 11pm.

"It's a really boring process," the neurologist warns. "Bring your laptop & books & movies & other stuff to do while you're in there. We come in every two hours to ask you to take a nap."

"That actually sounds kind of awesome," I tell him.

"...spoken like someone who probably has a severe sleep disorder," he responds, laughing - but he's right.

I am 34 years old, & I have been diagnosed with a sleep disorder so severe that it is considered, for some, a true disability.

I am not lazy. I am not bored. I am not just out of shape or lacking in vitamins or not trying hard enough. I repeat: I am not lazy.

I start to let myself sleep when I need to, on days when I have the time & the capacity to do so - on Sundays without plans or holidays off work. Most importantly for my mental state, I try not to feel guilty about it; I try to tell myself that if this is what my body needs, I don't need to feel bad about providing it - but I have a lifetime of guilt to try to unlearn.

I am 34 years old, & I have a sleep disorder. I have probably had it my whole life. And even though it sort of sucks? I have never been so relieved.

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