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Coping with Narcolepsy (tips, tricks, and advice from a fellow PWN)

By May 17, 2018 No Comments

1,2,3,4,5 – 1,2,3,4,5. I found myself counting off my jumping jacks in the bathroom of the hospital. I made an excuse to duck out of my client meeting in fear of them seeing me falling asleep standing up. In my sleepy stupor, this seemed like the best idea. Was coping with narcolepsy going to be this hard I thought? Was this behavior even sustainable? Why the fuck did I have to resort to jumping jacks? Could I perform the necessary functions of my job with this sleeping disorder? I felt hopeless.

 

Coping with Narcolepsy

 

Figuring out how to cope with Narcolepsy has been one of the biggest, if not THE biggest challenge of my life. Thankfully, I have learned somethings along the way. I call them my secrets of coping with narcolepsy. Are you ready for them? Here they are.

You are not alone

Coping with Narcolepsy

When I was first diagnosed I felt alone. Isolated. On an island. The doctor who diagnosed me didn’t really seem to care. She delivered my diagnosis with the same level of empathy you would give someone a parking ticket. I’m sure you’ve felt a lack of empathy from friends and family as well. You must remember one thing. There are hundreds of thousands of us just like you. We have the same struggles. We know what it’s like. Don’t be afraid to reach out to them.

99.99% of people won’t care

I’m sorry to say it, but it’s the truth. I mean, I care, because I know your struggles. I’ve walked that road myself, and continue to walk it every day. But 99.99% of the people you interact with at the end of the day are stuck in the prison of their own thoughts. They don’t know what coping with narcolepsy feels like. Worrying about their income, their relationships, their lives. They couldn’t possibly know what it’s like to be begging your body and brain to stay awake at work. Couldn’t possibly know what it’s like to go over 5 years without a solid night of sleep. How could they? They have the capacity to understand this disease just as much as you have the capacity to truly know what Parkinson’s is like, or Type-1 Diabetes, or Lung Cancer, or fill in the blank. But that’s okay. This is life, my friends. Let me be very very clear. I’m not advocating for others to walk all over you. I’m not saying to bend to their will when they are disrespecting you or making fun of your disorder. What I am saying is you should stop banging your head against the wall asking “why?”. Why don’t they get it? Why can’t they understand my inner struggle? Can’t they see I’m trying my best to remain awake? Do they think I like taking an amphetamine just to function? Once those questions do not hold any power over you, your suffering will diminish.

You can get better

Things may seem insurmountable right now, but there is light at the end of the tunnel. I’m not promising you that all your EDS symptoms will wash away, or that life will become a fairy tale. I am however saying that you can improve your health, and in turn the conditions of your narcolepsy. I have found that changing my diet has had a profound effect on my symptoms.

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How to cope with Narcolepsy

 

Coping with Narcolepsy

 

  1. Reach out to Narcolepsy Communities

There are several resources out there that allow you to connect with fellow PWN to help you cope with narcolepsy. On Facebook, my two favorites are the Narcolepsy Network group and the Narcolepsy Support Group. The Narcolepsy Network also puts on an annual conference, which I attended in 2017. My favorite narcolepsy book would be Julie Flygare’s Wide Awake and Dreaming

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  1. Treatment

Narcolepsy can be treated in a variety of ways. The most common one, which I’m sure you’re familiar with, would be medication. You may not know that there are several other forms of treatment. They range from Narcolepsy natural treatment options, stress reduction, cold exposure therapy, to diet and more. Looking for a comprehensive breakdown? Check out my how to treat narcolepsy page.

3. Have those hard conversations

We all know what I’m talking about. Whether it be with a loved one, an employer, or friend. We can communicate better. I was terrified of telling my mom that I wouldn’t be able to work for the family company. It took me nearly 5 weeks to bring it up. Once you finally have those hard talks, a weight will be lifted. When I started my job at a marketing agency, it was one of the first emails I sent to the company.

Here it is:

Hey Team!

Peter here.
I just wanted to inform you guys on something about me.
I have the sleeping disorder narcolepsy.
If you want to know more about the disease or how it affects me feel free to ask!
(I’m not shy about it)
However, It does affect me at work sometimes.  
One of the side effects is EDS or excessive daytime sleepiness.
One of the ways I combat this is by exercising in the middle of the day.
So if you see me doing Kettle Bell swings in the kitchen, or continuously doing calf raises at the standing desk that’s what’s going on! From time to time I may be taking power naps to help with the symptoms as well.
If any of my exercises are a distraction please let me know and I’ll be sure to adjust my schedule 🙂
Thanks
Peter”

 

Trust me when I say communication will help your relationships. I’m not saying everyone will have empathy, but you’ll be able to say you did your part, and with that comes relief.

4. Lifestyle

You will have this disease for the rest of your life, barring any miracle cure they find down the road. So in order to cope with narcolepsy, I found it’s best to design your lifestyle around it. That could mean picking a different shift at work, moving to a city with better public transportation, or even changing careers. Work in accordance with this disease, don’t try to swim upstream.

5. Mindset

One of the biggest coping with narcolepsy tools has been my mindset. Back in 2012, I didn’t think I would be able to live with the disease. All the employment options seemed null, my EDS was the worst it’s ever been, and I had constant negative thoughts playing over and over in my head. Once I started to replace the light with the darkness, life got easier. You can do this.

 

 

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