First of all, I want to point out that what I want to share in this blog is primarily the learnings I’ve had from living with Narcolepsy since the age of 13. That’s because I’ve learned ALOT!

The key take aways are that you actually can do things yourself to optimize your own wellbeing – even with a chronic disease like Narcolepsy. It doesn’t mean you cure yourself, but simply to find ways to approach life with a positive mindset and focus on the good things. You might not see it now, but you will find the positive point of view when you start the journey of self empowerment and lifestyle optimization.

But now, let’s go back to the start.

Sleepiness first hit me at the age of 13. Since I was a very energetic girl (I still am) it was very clear that something had changed when I started school again in the fall that year. I slept my way through the last years of school (a hellish reality of feeling like a zombie most of the time), not knowing what it was until I was finally diagnosed with Narcolepsy at 16 yo.

I did not get it from the swineflue vaccine (Pandemrix, 2009). I didn’t take that vaccine, and thank god for that, it would have probably made my symptoms worse.

When I finally had the diagnosis I was about to start high school and was put on Modafinil to treat my symptoms. It worked to some degree, but I still fell asleep alot in school and it was still dreadful. My friends didn’t get it, no one got it.

Then something happened that I am truly grateful for today. My mother found the low carb diet (keto). She convinced me we’d try it and so we did. The whole family switched to a low carb diet, initially following a protocol my mom had found.

As a teenager, I didn’t exactly like the idea of quitting candy and bread. But when I saw the immediate effects it had on me, I realized the wakefulness outweighs the instant pleasure of sugar any day! I couldn’t Not do it, when that made me feel like shit…

So, since 2013 I have been on a low carb, high fat diet and it’s literally been life changing! Going from being unable to do normal full-day activities, I could stay awake for 8 hours in a row for the first time! And as soon as I cheated I could tell the sleep attacks coming headed my way.

It took a few weeks on the low carb protocol to get rid of the sugar cravings. A few years in,  I didn’t even want candy or pizza anymore. Now, when I do take a piece of bread or candy, I don’t even enjoy it as much as I remember it. So it really gets easier with time.

Staying low carb has not only made me more awake, but also given me a sense of EMPOWERMENT. Do not underestimate the feeling of being able to affect your symptoms and minimizing them by choosing the right foods. That feeling GENERATES ENERGY! That energy has given me fuel to continue and learn to handle the disease better and better through the years. A positive cycle.

When I started studying at the University, I decided to stop with the medication. The effect wasn’t that good, and had also worn off over the 3 years I had taken it. I didn’t want to take anything stronger than modafinil. I figured I would rather eat this diet and drink coffee, if it had the same effect, which it did.

Now, years later, I’m so happy I made this decision. Because today I am happier and healthier than ever. And it’s mostly thanks to a low carb diet.