Narcolepsy Is So Much More Than Being 'Just Tired'

It was a beautiful 72 degrees outside, but the library was packed as we all prepared for the quickly approaching finals. My boyfriend sitting beside me was talking about how he has to turn in five weeks’ worth of homework and questioning out loud why he always does this to himself. “Because you still get incredible grades either way,” said my best friend Megan, who had been immersed in her textbook preparing for her psychology final. My coffee once again reached its bottom. My body felt the effects of the caffeine, but my mind was off in a daydream as my eyes stung from the exhaustion.

I had undergone a sleep study a few weeks prior to figure out what is behind my inability to ever feel refreshed or awake. I simply thought something was making me not get restful sleep at night, making me tired. Therefore, all I needed was a sleeping medicine and we’re all good.

I sprang to attention the second my phone began violently vibrating on the table. I looked at the screen and froze, my cheeks red and my face hot. Now Nick and Megan paid attention also, sensing the tension that suddenly overwhelmed the table.

It was my sleep doctor. She had an answer I had been waiting so long for, but was now afraid to receive. I talked myself out of it. There is nothing even wrong that is serious and there is no reason I should be nervous right now.

“Hello?”

“Hi, is this Heather?”

“Yes, hi. How are you?”

“I am good, yes. Sorry to bother you, but our appointment is not until next week and I like to personally tell my clients what their study found as soon as I have the information.”

There goes my stomach. I think it just got sucked out by a vacuum. Also known as: anxiety.

“OK,” I said, hesitantly.

“OK, Heather. So you fell asleep and hit REM within five minutes of lights out for all five naps, skipping over the first sleep stages. In order to be diagnosed with narcolepsy, you must fall asleep within five minutes for at least two of the naps, so it looks like we have a pretty severe case here. We will start treatment right away and find something to try to help you stay awake during the day. You also are showing restless leg syndrome, but we will deal with that after we address your %%hx6pJ7q8Ed%%. Do you have any questions, Heather?”

“No,” I croaked out. I do not even remember what she said after that. I looked my
boyfriend straight in the eyes and told him, “Well, I have %%Grpc4iu1wE%%.”

Megan responded, “Wow.”

Nick’s hand rubbed my back as he tried to comfort me, “It’s OK! We will get through this.”

I didn’t want to be getting through anything. I am 20 years old and have one more year of college. I want to be focusing just on school. Right when I felt like I was really “growing up” and becoming independent, life tossed me a neurological disorder. Still, I told myself, “We’re all good,” and I am still striving to believe that.

It has now been a year since I was diagnosed with %%43ojPuk0G5%%, an incurable brain disorder that increasingly worsens over time and ends the possibility of a normal, un-medicated life. A person would have to go 72 hours without sleep in order to experience the fatigue that narcoleptics “function” under every day.

My test results showed REM (rapid eye movement) beginning within one to five minutes of falling asleep, instead of the expected 90 minutes. Since I slip right into REM, paralysis and dream-like hallucinations occur constantly, even during a quick daydream during class. Lacking the first four sleep stages, the REM narcoleptics enter is not restful, just a place to be imprisoned by vivid nightmares and hypnagogic hallucinations. No matter how much sleep is achieved, the person will never be fully rested.

There is no way to avoid %%hv7wuzRhNP%%’s interference in daily life. It is not just exhaustion. There is a persistent state of mental cloudiness. Lapsing in and out of REM memory becomes subjective. “Trust no one” has a different meaning when it encompasses yourself.

Sometimes I sleepwalk through an entire day. “Microsleeps” describe this automatic behavior that occurs while we are asleep but still performing tasks. Most often I experience it while taking notes. Upon awakening, I am unable to recall whatever happened during the “microsleep.”

I am learning to get used to responses such as, “Oh, I am tired a lot! Maybe I have %%pRBcxiOTyC%%!” — or, “Isn’t that what those dogs on YouTube that fall asleep while they are running have? It is so funny.” It was funny when I fell asleep for the entirety of a two-hour tattoo. It is not so funny when a sleep attack occurs on the highway, or while making a turn at an intersection. People tell me to be thankful I am not “a single mother going to school full-time,” because then I would know what tired was. Heat flushes through my body and I grind my teeth, keeping silent. In my mind, I sift through memory after memory to challenge their accusations.

Narcoleptics are not “just tired,” and they cannot “just go to sleep” to experience rejuvenation. It can be as though we are imprisoned by our minds. Every hour we output all of our energy trying desperately just to stay awake. That is all we can do.

I realized that doctors do not focus on it because it is too rare. Others think it is a joke, that we should just go take a nap. Since many people’s eyes seem to be closed to the disorder, I must always keep mine open — even if that means living in a daydream.

Follow this journey on Beautiful Broken Life.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.