Learn How to Live with Narcolepsy

On Sunday, I was on a Facebook live chat with Project Sleep to share how I live with narcolepsy.

First I read an article I wrote as part of the Rising Voices of Narcolepsy program. Then, Julie Flygare asked me some questions about how I manage narcolepsy and what my experience has been like.  

You can watch that here.

Our conversation helped me realize that I have done a whole lot more than I ever realized to live with narcolepsy.  Things that I just see as part of my habits and daily life now are actual strategies for treating Narcolepsy.  I know there are plenty of things that I didn’t think of mentioning in the hour we had Live. So I’ve tried to list them out simply below. This has nothing to do with the lucid dreaming or coping with hallucinations that we focused on in the talk. If you are interested in that, you can find more here.

Here are some of the things that I have integrated into my routine. I’m not saying they will work for everyone. But you might want to try some if you haven’t already.

Live well with narcolepsy wake up naturally, nap training, avoid food before sleep, skip breakfast, eat clean and intuitively, kill the ANTs, Replace old beliefs, program new beliefs, take cold showers, feel all the feels

Wake up Naturally

1. When I wake up naturally, I get up. Even if its an hour earlier than I need to be up.  Once I wake up, the sleep I get afterwards is not very pleasant. I tend to wake up groggier than if I just got out of bed earlier.  Then I have an extra hour in my day to read a book, cook something fun, or even catch up on Instagram. 

Nap Training

2. I did nap training to find the “sweet spot” for my naps.  I have the most efficient naps for me.  This is not the same for everyone. In my case, its 5-20 minutes, and usually between 7-12 minutes is the most effective.  I know that is really short and specific. But I took the time to figure it out and now it’s like a superpower! If you haven’t tried it, I highly recommend it. Also, if I anticipate it may be hard to wake up in my time range, I drink a cup of coffee before sleeping. This allows the caffeine to come into effect as I’m waking up. I have learned this is a real thing, called a “coffee nap”. This superpower allows me to live with narcolepsy!

Avoid food before sleep

3. Avoiding food before bedtime.  Of course, I get the munchies when I get tired, like many of you probably do. But instead of reaching for food to get more energy, I go to sleep (if possible.) For me, eating before bedtime is a bad idea. Its an invitation to the nightmares, and for crappy sleep quality. I try to leave at least 3 hours between food and bedtime. 

Skip breakfast

4. Skipping breakfast is a tool I use sometimes when I know I need to stay focused throughout the whole morning.  If there is no time for a nap, there is no time for food.  That’s because even when I eat clean, there is always a chance my food will increase my sleepiness.  So if I can use intermittent fasting to increase my focus, I do that. 

Clean Eating

5. Eating healthy food is good for everyone. But for people with narcolepsy, I see it as even more important.  This doesn’t have to mean following a specific diet. It may just mean eating intuitively, but try different things to see what works for you!

I know you may be resisting this but hear me out! If you have a dog or cat that isn’t quite well, you may treat it to a special diet. You buy expensive food, or even take special care to make sure it eats at optimal intervals.  Why wouldn’t you do the same for yourself? I try not to think of clean eating as a punishment, but instead as an expression of love to myself. 

Kill the ANTs

6. Cleaning up my thoughts.  All-day long we are bombarded with somewhere around 80,000 thoughts.  Most of those thoughts mean nothing at all but a huge percentage of them repeat day after day.  I worked to clean up my ANTs or Automatic Negative Thoughts so that my head is a happier place to be. 

Replace Old Beliefs

7. I used to think beliefs were just about religion and I made those choices accordingly. Then I learned I have control over all of my beliefs. I can decide anything from whether or not I like the taste of a food, to whether or not I think I can succeed at something new.  When I change my beliefs about things, the outcome also changes. This is not as simple as just stating, “I will stay awake in this movie” but it is a process that anyone can learn. I removed old beliefs to stop draining my energy by expecting my energy to be drained. 

Program New Beliefs

8. Program my own new beliefs. This obviously goes with the previous one but it’s possible to remove a belief without adding a new one.  I have programmed new ideas into my mind. I consistently choose to do so when I see one that serves me. It isn’t always easy but the results are so worth it. I programmed new beliefs. These increase my ability to stay awake, decrease cataplexy, and overall get more joy out of my life. 

Take Cold Showers

9. This is something I learned from watching Wim Hof’s videos.  I use cold showers to help me with temperature regulation. It seems this is a common problem in people with narcolepsy.  I think the cold showers have also helped me in other areas, too. But I’ll let you try them out and decide for yourself what they can do for you! 

Feel all the Feels

10. Accept, feel, and express my emotions.  Maybe this sounds a little hokey, but bottling up emotions is EXHAUSTING.  Not being true to who I am or trying to cover up what I feel, often leads to physical symptoms. They are also draining.  So it’s important that I went back and dealt with old emotions. As I move forward, I acknowledge and allow emotions to be a natural part of my human experience. I do this using so many different techniques.  Some of them are EFT, meditation/mindfulness, journaling, hypnosis, and NLP. A lot of this has been done with therapists and coaches, and I do the regular maintenance on my own. It is a huge part of how I really live with narcolepsy.

Live with Narcolepsy

Know that you still have a life to live! This diagnosis may have been a long journey, but it isn’t going to define who you are if you don’t want it to. This is a big part of how I am able to really enjoy life and live with narcolepsy. If you are interested in learning more about any of the ten points I outlined above, please let me know! I would love to hear from you. 

Everything I do will be different from what you do, but learning new ideas and allowing yourself to have a new experience is part of the journey. 

2 thoughts on “Learn How to Live with Narcolepsy

  • Heidi Kumme

    Hello. I am so glad I found your site. I am 49. Diagnosed 22 years ago. I live in Johannesburg South Africa. I found your 10 pointers so interesting and enlightening. For the past 7 years or so I was convinced that the hot flushes I get is from early menopause. Now I have reason to believe otherwise. Thank you.

    • Hello Heidi, you are welcome. Thank you for your kind words. I’m so glad you found something useful! As far as I know, the heat regulation issues are not a documented narcolepsy symptom, but in a group called Positively Narcolepsy on Facebook, we seem to talk about it a lot! I hope that you find something that helps for you! Sending lots of love and light your way!

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