For most people, sleeping is a luxury, something you do on a Sunday morning, curled up on the deck without the pressure of the alarm clock going off.
But in my case, sleep has become my enemy.
My life is very common: I am a personal trainer in Amsterdam, where I share an apartment with my boyfriend and two colleagues.
I love working out, shopping with my friends and going out to dinner. The usual things. But I also can’t help but fall asleep.
I have narcolepsy, which basically means I don’t have a biological clock. As a result, I need to sleep about eight or nine times a day.
Sometimes it’s short naps that last about 10 seconds or so while I’m sitting, and I don’t even realize that I fell asleep.
Other times, I have cataplexy, which means that my whole body collapses, my knees shake, my head gets heavy – and it’s like the sun shines directly in my eyes. When that happens, I just can’t stay awake.
And at night, when I finally want to sleep, I can’t.
When people hear that I am narcoleptic, they tell me that they “also get tired” or “like to take naps” – and think they are too. But it is not the same as being tired. Everyone gets tired. It’s other level.
To start with, my narcolepsy not only makes me fall asleep – it can also lead me to do very strange things.
If I’m having dinner and I start to have a sleep attack, I suddenly start saying or doing totally random things, like taking my food off the plate and putting it on the table, or saying things to my boyfriend, Maikel, like: ” My dog jumped out of the window “.
Obviously, there would be no problem if my dog had actually jumped out of the window or if it had something to do with the conversation, but it just comes out of my mouth. It’s almost like talking in my sleep, but I’m kind of awake.
I first experienced symptoms of narcolepsy when I was 15 years old, I was one of the few people who had the misfortune to develop the condition after getting the swine flu vaccine (H1N1).
In 2010, during the outbreak of the disease, those who were at risk of being infected took a vaccine called Pandemrix.
Later, however, it was discovered that the vaccine had caused narcolepsy in a small number of people (about one in 55,000, according to a study by Public Health England, the UK government health agency, which pointed out a risk higher among children who have been immunized).
Everyone at my school got the vaccine. Some students had contracted swine flu, which meant that we were all considered to be at risk. At first, I had no problem, but about six months later I started falling asleep when I didn’t want to.
It was not something I really noticed, as it was only a few times a week at that time. But, looking back, I know it was narcolepsy taking hold. It slowly got worse, and before I knew it, I was falling asleep in every class.
At that time, I was only 16 and slept at least eight hours a night. I had no idea why I couldn’t stay awake.
Other people started to notice too. I remember my friends saying to me, “Belle, at first we used to joke and used to laugh, but now you are literally falling asleep in every class … Are you okay?” So my mom took me to the doctor.
They were reluctant to give me medicine at first, because I was too young. And they wanted to make sure that I didn’t just stay up late at night or use my cell phone in bed.
I was finally diagnosed with narcolepsy when I was 17, right in the middle of the A-levels tests (a kind of British version of Enem).
First I was prescribed a stimulant, Modafinil, which helped a lot, but after a while my body got used to it and had no effect. I am now using Methylphenidate (Ritalin), which I take once in the morning, followed by other doses throughout the day.
Once the diagnosis became official, I left school. I tried to study, but it was impossible to concentrate. I wanted to dedicate myself to jumping equestrian professionally, but if that is tiring enough when you are totally healthy, imagine when you have narcolepsy.
Then I started to panic, wondering what the hell I would do with the rest of my life, or how I could live a day without my mother – the only person who understood what I was going through. It was a very lonely position.
But I soon found something that helped me: running. I started to notice that for an hour or two after going for a run, I felt very good, with or without medication. After talking about it with my mother, I qualified as a personal trainer, a job I now do part time.
Working out changed my life – as did my boyfriend, Maikel, who I met about three and a half years ago when I went skiing on vacation. Embarrassingly, his twin brother Nick saw me having a sleep attack during dinner, taking the ingredients out of my pizza and putting it in my mom’s.
The next day, Maikel asked me about it, and I explained that I had narcolepsy. Instead of being scared, he told me that he wanted to talk to me about it and learn more about what I was going through. And to this day he has never, ever been angry with me, despised me or cared what other people were going to think.
Previous boyfriends were not so understanding. I had an ex who kept telling me that “I wanted someone who could just lie in bed with him and stay up, or sleep late.” But I absolutely hate the idea of being lazy in bed, and he knew it. All I want is to be awake and active in the morning.
He was so embarrassed by my sleep attacks in public that he humiliated me.
For example, once we went out to dinner and I started dipping my chips in the napkin. He replied, “Oh my God, what the hell is this you’re doing, it’s so weird, stop it”, although he used a much stronger word than “hell”.
Hearing things like that from him all the time made me think I was really weird.
It wasn’t just ex-boyfriends that made me feel small – sometimes random people do that too. Once, I went to a dear friend’s wedding with my mother, and during the reception I had an attack in which I started to take the broccoli off my plate and pile it on top of my phone.
Immediately, the whole table was saying things like, “Wow, Belle is so drunk,” and they even started filming me with my cell phone. I tried to explain that I had narcolepsy and I couldn’t help what I was doing, but they didn’t want to hear it, they just wanted to laugh at my expense.
I don’t have sleep attacks just at meals, although eating can trigger them. They tend to get worse when I’m menstruating or when I’m stressed about something.
I’m not shy, but if a stranger talks to me, it causes a panic response inside me, and it causes an attack. They are triggered by different reasons for each person, but that is what makes it more difficult for me.
Maikel is amazing when we go out to dinner. He tells me just to put his head on the table and sleep for five minutes, and he is not at all embarrassed. Pick up the phone and go read, or browse social media for a bit, until I wake up and feel a little better.
That little gesture means a lot to me because I’m still embarrassed about it. We went to Paris recently and every night at dinner people looked, pointed and whispered. I wanted to ask them to stop, but when that kind of thing happens I get so nervous that I can’t speak.
At the same time, I feel incredibly lucky. If you had told me when I was a teenager that I would need to sleep eight times a day, I would have thought that life wouldn’t be worth it.
But while narcolepsy is a drug, I am very happy to have found a way to deal with it through exercise.
Of course, there are different treatments, but this is what works for me. By attending the gym three times a day for intense training, and to train my students, I am able to live my life. I feel energized and, most of all, awake for hours later.
And then there’s Maikel. I could never imagine that someday I would meet someone as thoughtful and caring as he is.
I will never win this fight, because there is still no cure for narcolepsy. But as long as I remain active, I know that I am living my life to the fullest – and that is the most important thing.
* Report made to journalist Ashitha Nageshz.
This article was originally published on August 21, 2018.
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