Inside My Struggle to Manage My Weight

Do narcoleptics struggle more? According to studies, many people with narcolepsy have a tendency toward being overweight. Adults with narcolepsy weigh about 15 to 20 percent more than would be expected on average in the general population.1,2

Is it because we sleep so much or are possibly more inactive? When our hypothalamus stopped regulating our sleep, did it also stop regulating other body systems? These are a few of the questions I ask myself, as I battle to lose my narcolepsy weight.

Comparing before and after narcolepsy

For 30 years, I was the girl people hated. I could eat anything I wanted, and never gain a pound. I would have a baby and trim right back up.

When I got narcolepsy at 30, I was completely unprepared when my weight started to climb. I gained 60 pounds after the birth of all 4 of my children. What was worse was, I couldn’t stop gaining.

Finding validation and determination

One day I sat down with a fitness instructor. I told her all of my problems. How my cataplexy disrupted my days. My excessive daytime sleepiness drove me to bed, and my mind was just a wreck.

She said, “Keeley, you have some of the most legit excuses I have ever heard. Unfortunately, it doesn’t matter.” Somehow hearing this validated my struggle, while also making me face the facts. Getting back in shape was going to require me to do things I had never done before.

Getting back in shape

My first goal was to stop gaining. At 5’4, and 194 lbs, I was considered obese. In the midst of my narcolepsy symptoms, I started working out again. I couldn’t find anything I enjoyed so it wasn’t sustainable. I tried every form of exercise imaginable. While I looked, I worked on what I was eating. 

I started creating habits like eating 2 cups of veggies a day and reducing my sugar and carbs. I also continued my already strong habit of drinking water. I lost 20 pounds

Discovering Crossfit

And then Crossfit caught my eye. Which seemed insane. I was in the worst shape of my life and was having cataplexy attacks almost daily. There was no way I could do Crossfit. To add to my fears, so many people told me I was crazy, and couldn’t do it.

But something about Crossfit just called to me. I know that sounds lame, but it’s the truth. Maybe it was the smell of endorphins wafting out of the building. I promised myself that if I reduced my cataplexy symptoms enough, I would start. Meanwhile, I kept working on my nutrition.

Becoming addicted to exercise

In January 2018, after completing Neurotherapy, I was able to walk into Crossfit. My cataplexy, which at its worst was 25 to 35 drop-me-on-the floor episodes a day, was now a few tweaks a week. I was still scared. I was pudgy, totally out of shape, and had a healthy fear of dropping a weight on my head if I had a random cataplexy attack. 

I was welcomed by the most amazing group of people. The coaches taught me how to scale or make things easier so I could accomplish the movements. I learned how to lift, and how to listen to my body. I saw that the people who were really fit also had to work hard for their bodies. No one got a free pass. I was not a victim just because I had narcolepsy. I also got addicted. I fell in love with how I felt.

However, I didn’t lose a pound.

Learning to love what I gained

What I gained was a bunch of muscle. I didn’t realize how weak I had been. My mom stopped asking my dad to move furniture and started asking me. I also benefit from the endorphins. My brain is energized when I work out which makes it easier to face my days. I also sleep better. My narcolepsy is easier to manage when I work out.

Two and a half years later, I still haven’t lost much. I am still technically obese, but my body has totally changed. I feel so much better. I continue to work out, eat well, drink plenty of water, and keep my stress at bay. I am learning that the scale doesn’t matter as much as how I feel. And that is worth my weight in gold.

Do you struggle with your weight?  What have you found to be successful? Join our community and share below.

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