JUDY FERGUSON: My name is Judy Ferguson. I'm a classical musician, and I teach music as well. And I have a condition called narcolepsy with cataplexy. And I sleep a lot.
My head is always in the clouds. Because narcolepsy is a sleep disorder that causes people to be excessively tired during the day, I could fall asleep without even realizing that I'm asleep, as well as some other symptoms-- hallucinations, sleep paralysis, and a thing called cataplexy. So it basically means we enter REM sleep a lot quicker than the average person, which causes us to go into dream sleep really quickly. Because I don't really get a full sleep cycle, I'm tired all the time.
I've been tired for pretty much as long as I can remember. All through high school, I would go home after school and nap. A bit later on when I was probably about 21, I would be driving to work, and I wouldn't remember my trip to work.
So I turned my dash cam around on myself and found out that I was falling asleep without even realizing. So I went and saw a sleep specialist. So I had my first overnight sleep study. I was diagnosed with sleep apnea and was told to start using a CPAP machine. So I had another sleep study done to see how the CPAP was going, and basically all my symptoms were getting worse.
I was so sure getting the CPAP machine was going to help this relentless needing to sleep.
So I got booked in for a daytime sleep study, which is called an MSLT. You go and have the overnight sleep study, and then the next day you have to have a series of naps. The sleep technician will come in the room, be like, you have to nap now. And basically, they were like, yep, everything's normal. And I didn't stand for that.
All this time I was sure that I had narcolepsy by talking to people and reading up on symptoms, and my GP agreed with me. And so it was just a matter of fighting for answers. So then I finally found this third specialist who sent me for my last sleep study. They gave me a diagnosis, narcolepsy with cataplexy. And I remember I was so happy. I have an answer, and I can do stuff about it now.
Sleep attacks, I never used to be able to feel them coming on before I got diagnosed and got started on medication. I didn't even know that I was falling asleep. I can start to feel less weight come over me where if I don't force myself to go lie down now, my body's going to make me fall asleep no matter where I am. And I like to call it the "narcolepsy monster." I'm not choosing to sleep. It's the narcolepsy monster creeping up behind me, tapping on my shoulder.
CREW: Hey, Judy? Judy? We're about to roll.
JUDY FERGUSON: Are we ready?
JUDY FERGUSON: Once I fall asleep, I find it difficult to stay asleep. Just keep waking up all the time, you can't go back to sleep anymore. Sometimes we also get hallucinations at nighttime. They're usually accompanied by sleep paralysis. I will wake up in the middle of the night, and I won't be able to move.
One that comes up frequently, I will wake up, and my bedroom door will be glowing red. And I can see black figures walking past the bedroom door, and I can always hear the footsteps getting closer and closer to my room.
It's almost like a gateway to Hell. And I can't do anything about it.
I've decided I'm just going to take advantage of the fact that my weird narcolepsy brain likes being up at 5:30 to 6 o'clock in the morning, and then anything productive that I want to do for the day has to be done before 9:00 AM.
Most days I just deal with the fact that I have narcolepsy, and I've accepted it. I have my medication. It's my ritual to take it and then have a coffee. I try to do my most productive stuff in the morning. And then after lunch, I'll always have a nap. For the most part, I am comfortable napping when I need to nap and where I need to nap. I have a pillow and a blanket in my car, and I can have a nap whenever I need to have a nap. I now have a sign that says, "I have narcolepsy. Please don't wake me up."
I recently started at a new job, and I just decided that I was going to be completely transparent about it. I was like, hey, guys, I have narcolepsy. I might need to go have a nap in the band room. Don't mind me, and don't send any kids in there, if you don't mind. And they were really great about it. Drawing was a really big thing for me that I just rediscovered. And I found that when I'm doing that, I can stay awake for hours.
I'm really happy with where I am in my life now. I started documenting everything with my narcolepsy soon as I spoke to a sleep specialist. I just really wanted to be that voice for people who were in the situation I was in. It's such a nice thing to just know that you're not alone.