Narcolepsy: What the Disease Does to You

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Narcolepsy
What the disease does to you

© Lolostock / Shutterstock

Taking time out or taking a nap – Nicole Zwickl suffers from what others long for. Because the disease narcolepsy constantly makes you fall asleep suddenly.

by Sandra Winkler

A few years ago I went snorkeling on vacation. I still remember how I thought: What is that beautiful! Then something on my swim fin touched me. A fish? My husband at the time who was doing nonsense? No, I had touched a riff – that woke me up in that moment. I fell asleep snorkeling and just kept swimming. Typical for us narcoleptics: We carry on something, but don't even notice it.

"I've learned to deal with my fears"

When I woke up, I was already a long way from the dive group and the guides. Dangerous because I could have drowned. I underestimated that back then. My diagnosis was still fresh, I had never seen such automatic actions.

Sometimes I still don't want to admit that I can't control my sleep attacks. For example, I tried to stay employed for a long time, for example in sales. But I just don't know when I'll suddenly fall asleep next time. I have to be able to take a break at any time and cannot make any binding appointments. Hardly anyone understands that. If I am invited to a birthday, I have to say: I don't know if I'll come. Maybe I sleep too.

You can't rely on me. Because I can't rely on myself either. That doesn't always go down well, not even with people who are close to me. I used to cry a lot, but now I've come to the conclusion: If you can't take me as I am, you should go. You grow into the situation, you learn to live with it. I've learned to deal with my fears. And my partner can do it well too.

Been through for 48 hours – The constant feeling of narcolepsy

There are very different types of anesthesia, that's what we call ourselves. For me it is the case that my brain simply switches off during sleep attacks. My head is then completely empty. I can no longer hear anything, see black, although my eyes are open, says my daughter. When someone talks to me at moments like this, I look through them. Those who do know are rather annoyed: "Oh no, do I have to repeat everything now?"

Narcolepsy is a disorder of the sleep center in the brain that affects around 40,000 people in Germany. Some anesthesia also have cataplexies – their muscles fail, they have facial derailments, they collapse completely. It looks like a faint, but the person is still approachable. Some people mean well and call an ambulance when they see someone on the ground. Such an attack only lasts two or three minutes. Therefore, please always check whether the person is wearing an emergency bracelet on which treatment information is noted.

My narcolepsy started when I was 15. I felt tired all the time – at school, in the afternoons at the pool … My mother often complained that I wasn't listening to her. It was a long way to get diagnosed in 2017. I finally got a name for what I have.

For many, I'm just the one who always has to sleep. People tend to make fun of it, "Oh, I didn't have a good night either" is a standard saying. Narcoleptics not only have these immediate sleep attacks, we are also awake for hours at night. A doctor once said to me: "I'm tired too, but that's why I'm not sleeping now." But a narcotics feel like they've been through 48 hours. Please imagine that.

NICOLE ZWICKL is 41 and has two children. She emphasizes that every case of narcolepsy is completely different. More: narkolepsie-netzwerk.de

BARBARA 52/2020