I think I have narcolepsy: Part One
3:19pm
Tuesday, January 14th, 2020
Alli Needs A Nap
The worst part about not having a diagnosis for what ails you is thinking you’re crazy. It’s been about fifteen years of me telling my friends, family, doctors, pets, and writing in my journals “I just feel so tired.” It was something I dealt with for so long that I finally just convinced myself, “I’m sleepier than most, and I require a little extra sleep.” I’m not just talking about the 3pm slump or feeling drowsy after a big meal. I’m talking about my life’s goal is just to have a warm blanket and a pillow at my disposal at work, in my car, and at home, AND be able to use them; and if I could carry them in my purse, I would. I hide it. I joke about it. I blow it off. I cry. I laugh. I get mad. I have done this for years.
I felt this way — ashamed, misunderstood, on guard — until I learned about narcolepsy last year. Big news! I think I have narcolepsy.
It’s not that I don’t sleep at night. I sleep eight hours, at least, every night. Most nights I try for nine. In my mid-twenties I brushed up on my sleep etiquette and learned that a consistent sleep/wake time every day would be ideal for someone as sleepy as me. I also learned that exercise (as tired as I may be) would actually help me be less sleepy in the daytime. So I started a few habits around 2016 that have helped a lot. I go to bed at 8:30 every night, and I wake up at 4:30 to go to the gym. It’s my favorite routine. I love sleeping, so going to bed at 8:30 ain’t no thang. Getting up at 4:30 feels nice. I like having coffee with my dogs. After I work-out I fill up with some protein and healthy carbs, then I start my day. I usually catch a nap between 1–2 and then take another nap at 5 until about 6:30. I wake up for a quick dinner, then it’s off to bed.
“Have you had your thyroid checked?” As many times as my insurance will allow it. “I heard us ladies can have some serious problems if our vitamins are out of whack. Have your doctor run a panel.” The panel has spoken. I’m healthy as an ox. I’m not trying to be an ass, but I’ve literally had every test I can think of performed on my body, and nobody can seem to tell me why I am so tired or if my tiredness is as unusual as I suspect it is. My thyroid, B vitamins, iron, red and white blood cell count, lymphatic system, and you name it are all normal. The gastroenterologist, neurologist, oncologist, and endocrinologist all say my guts, brain, cellular make up, and lymphatic system are just fine. My gyno says my parts are good, too, but that’s beside the point.
Wait? Have I really seen that many specialists? Because I’m tired? Sad answer — yes.
But maybe I had cancer, thyroid disease, Lyme disease, or a brain tumor!
But maybe I didn’t. Am I just a big baby?
Oh. I am a hypochondriac.
Unfortunately, I thought for a long time that I was, indeed, a hypochondriac, and I was ashamed about it. So I put it away. I’m just sleepy by nature, and I need a lot of naps. I just need to get a better job that can accommodate my need for daytime naps. I just need somewhere safe to go at 10:30am to put my head down. If I’m lucky I’ll catch a whole nap on my lunch hour at 1pm. I just need a little extra sleep. These things are normal, and I need to quit fussing about it.
I let my suspicions that the doctors were missing something slide for a long, long time. I conceded to the diagnosis of depression in high school, but later the doctors also suspected anxiety. Finally in 2016 I had the worst “depression” of my life. I slept, and slept, and slept. I didn’t want to do the things I enjoyed doing. My body felt slow. My brain felt fogged. I felt sad. All of these are real symptoms of depression. 2016 was “The Summer of Sleeps” as my husband calls it.
I’m fortunate to have good people in my life. I am really thankful that people care. I have amazing friends who do their best to understand me, and they honestly don’t think I’m a lazy bum. My friend Sean says I’m the sleepiest person he knows. He says it in a funny way that doesn’t make me feel insecure. My friend Brittanie says she doesn’t mind when I have to cancel plans because she understands that I need a nap. She’s a really good friend. My mom took me to the doctor way back when I was 15 years old. She hated how my exhaustion made me sad, and she so desperately wanted to fix it for me. My husband just lets me sleep. “You taking a nap now? Ok, maybe we can go disc golfing tomorrow if you’re feeling charged up.” He doesn’t understand it, but he is so kind about it. People close to me have been understanding, but I wonder what it looks like to outsiders? Honestly, it is hard to hide every day. I worry what my new bosses would think if they ever learned I actually take my lunch break (gasp) and go take a nap! I sometimes worry that my friends who don’t know me well think I’m blowing them off in the evenings when I pull out of a plan at the last minute. I have always felt uncomfortable telling people how tired I am and that I’d like to go take a nap…
Right now.
Now that I know what narcolepsy is I don’t think I’m a hypochondriac anymore. I think this is real. I think my symptoms are more common than I realize, and I think that I want people to know about how hypersomnolence and conditions like narcolepsy are not laziness, boredom, or the result of poor time management at bedtime. So I saw another specialist. I think we got it right this time. I am so relieved.
I have my Sleep Study and Multiple Sleep Latency Test (MSLT) later this week. I am about 90% certain I have narcolepsy, 9% sure it’s an even weirder condition called ideopathic hypersomnia, and I’ve left that 1% out there for chance — in case I really am a hypochondriac.
Time will tell. Stay tuned.
