Narcolepsy doesn't make you fall asleep at random times...

(If you generally fall asleep while reading, I've highlighted the most important parts so you may skip the details.)

I have been tired since I was born. I took naps after most school days all through high school. I definitely am a good sleeper, I fall asleep quickly, sleep deeply, and stay asleep through the night. These days, I come home from work at 4pm, take a "nap" that lasts until 9:30pm. I wake up, get ready for bed, fall asleep at 10:30pm, then have a hard time getting up at 6:15am. I finally decided that this is not normal, so I went to my doctor.

He referred me to a sleep specialist. Two days ago, I went for my first appointment. I described my symptoms, he asked me strange questions, like, "Do your knees go weak when you laugh?" I expected him to tell me I had sleep apnea, set me up with a mask, and send me on my way. But to my shock, he said he is pretty certain I have narcolepsy! I always thought that people with narcolepsy always passed out at random times. I had no idea that there was a thing called cataplexy, and someone with narcolepsy could have it without cataplexy. If I had known that, I could have gotten this taken care of sooner!

Cataplexy is what causes the 'passing out' episodes that narcolepsy is so famous for. It basically means that when emotions are high, muscle control is low. The higher the emotion, the lower the control.

But I don't have that. All I have is extreme tiredness regardless of how well I sleep, or how much. I can fall asleep anywhere at any time as long as I sit quietly without engaging in any activity. Sometimes, if I'm sitting still and not engaged, I find sleepiness to be so incredibly powerful that I can barely resist sleep. I have developed little tricks to keep myself awake when I really need to be. I play a game on my phone, or eat/drink something stimulating - chocolate, anything carbonated, caffeine is a plus, start to draw or write about something I'm passionate about...

I think it is important for people to know that this exists for one major reason: falling asleep while driving.

I currently have a commute of one hour and fifteen minutes (if traffic cooperates - in the worst case, it has taken me three hours). I have always had long commutes to work, because I have rarely found a job close to home. I can't move closer to the job because I have a mortgage that I'm upside-down on ($15,000 - $30,000 which is just a paper loss as long as I stay). My friends all live far from me, and I often drive to go see them, though I have been doing that less lately. I currently choose to stay home and sleep rather than go spend time with people.

I do have a tendency to feel this strong sleepiness while driving, and it terrifies me. Honestly, it should terrify me. I may have a disorder that could cause me to fall asleep against my will. This could be deadly, not just for me, but for other innocent victims of my sleepiness. And the worst part is that apparently, narcoleptics who are under treatment can be safer drivers than the average person.

I am currently 32 years old. I probably could have been diagnosed with narcolepsy at 10. Why wasn't I? Most people (myself included) just thought I was lazy. My parents were pleased, because I was their "best sleeper." When I was a teenager, everyone said, "Teenagers need more sleep." When I was in college, people just thought I was staying up too late (which I definitely was sometimes, but not every night). After college, I got irregular jobs with unusually late and short hours, so I could sleep in. Also, in those jobs, I could change pace whenever I felt tired, which I did without ever realizing I was doing it. Finally, I started teaching and the symptoms got much worse. Still, everyone thinks I'm just lazy. What if I'm not?

So, all these years, it never occurred to anyone that I might be narcoleptic. Part of the reason is that no one knows that you can have narcolepsy without cataplexy. Everyone thinks that you only have narcolepsy of you fall asleep at random times without warning. Some even think you fall asleep without even feeling tired. People need to know that narcolepsy without cataplexy exists! How many lives could we save from people falling asleep at the wheel? What if it happened to me? What if I died falling asleep while driving, never knowing I could have a treatable condition that causes this? Are others dying because they don't know?

Please help me get the word out! I will keep you posted on my progress towards a diagnosis and beyond. Thanks for listening.