Main Menu

No, I’m not wasted or being rude – I’ve got narcolepsy

Image result for No, I'm not wasted or being rude - I've got narcolepsy

People point, laugh, and even film me when I’m having sleep attacks

For most people, sleep is a luxury – something you indulge in on a Sunday morning, curled up in bed without the pressure of an alarm clock.

But for me, sleep has become my enemy.

My life is pretty routine really – I’m a personal trainer in Amsterdam, where I live with my boyfriend and two other flatmates. I love working out, going shopping with my friends, and going out for dinner. All the usual stuff. But I also can’t stop falling asleep.

I have narcolepsy, which means I basically don’t have a body clock. As a result, I need to sleep about eight or nine times a day. Sometimes these are short naps lasting about 10 seconds or so while I’m sitting down, and I don’t even notice I’ve drifted off. Other times I have cataplexy, which means my whole body collapses underneath me, my knees buckle, my head feels heavy, and it’s like the sun is shining directly into my eyes. When this happens, I just can’t stay awake.

Then at night, when I finally want to sleep, I can’t.

When people hear I’m narcoleptic, they tell me they “also get tired” or “like to take naps” too – and they think they have it. But it’s not the same as just being tired. Everyone gets tired. This is another level.

For one thing, my narcolepsy doesn’t just make me fall asleep – it can also make me do some pretty strange stuff. If I’m at dinner and I start to have a sleep attack, I’ll suddenly start saying or doing really random things, like taking my food off the plate and putting it on the table, or saying stuff to my boyfriend, Maikel, like “my dog jumped out of the window”. This would obviously be fine if my dog had actually jumped out of the window, or if that had had anything to do with the conversation, but it just comes out. It’s almost like sleep talking, but I’m sort-of awake.

I first developed narcolepsy when I was 15 – I was one of the unlucky few who developed it after having the swine flu jab. In 2010, during the swine flu outbreak, people at risk of getting it were given a vaccine called Pandemrix. But it later transpired it had triggered narcolepsy in a small number of us (about one in 55,000, according to a study from Public Health England which found an increased risk among children given the vaccine).

Sleep attacks can come at any time

Everyone at my boarding school had the jab. A couple of pupils got swine flu, which meant we were all considered at risk. It was fine at first, but about six months later I started falling asleep when I didn’t want to. It wasn’t anything I really noticed, as it was only a couple of times a week at that point, but looking back I know it was the narcolepsy setting in. It slowly got worse, and before I knew it, I was falling asleep in every single class. At this point, I was only 16, and I was getting at least eight hours sleep a night. I had no idea why I couldn’t keep myself awake.

Leave a Reply

Your email address will not be published. Required fields are marked *