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Living with Someone with Narcolepsy – Words of wisdom from a PWN

By March 18, 2018 No Comments

Living with Someone with Narcolepsy

 

Do you find yourself living with someone with Narcolepsy? Does your loved need narcolepsy support? Are you trying to help that person who has Narcolepsy? You’ve come to the right website. In this article, I will detail my personal experience with narcolepsy, break down some common symptoms, try to explain what it feels like, offer suggestions on how to be supportive, and provide treatment options.

 

My Personal Experience with Narcolepsy

 

I was first diagnosed with this disease in June 2012. The diagnosis process was long and arduous. At first, I was confused. I didn’t know what the hell was going on. But after 5 sleep studies, they finally narrowed it down to Narcolepsy. To be honest I felt unsupported. By the doctor, by my friends, and by my family. No one had any idea how hard it was to live with Narcolepsy. How could they? From the outside looking in, I just appeared tired. Just have more coffee they said. That’ll do the trick!

 

Explaining what Narcolepsy feels like

 

Narcolepsy Support

 

If I have to use one metaphor to describe what this disease feels like I would have to go with the Nyquil metaphor. Imagine that every single day you live, you’re carrying around a bottle of NyQuil and you don’t have a choice when you drink it. Somedays you get by with only having to take sips here and there  — nothing too bad. You can fight off the grogginess and carry on your day. But then there are times when your hand is forced to chug as much as possible. And then you’re expected to be a fully functioning adult for the rest of the day. Have you ever accidentally taken a medication that makes you drowsy without knowing it? Imagine that’s how you live every day of your life.

Common Narcolepsy Symptoms

 

When figuring out how to support someone with Narcolepsy it’s important to be familiar with the symptoms. The most common symptoms of Narcolepsy are EDS (excessive daytime sleepiness), cataplexy (muscle loss), sleep paralysis, brain fog, fragmented sleep, and hypnagogic hallucinations.

The best wait I fight EDS (Excessive Daytime Sleepiness) is with a cleaner diet. Has your loved one changed their diet? Do they need guidance? Have them sign up for my free diet ebook:


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Living with Someone with Narcolepsy

 

How to Support Someone with Narcolepsy

 

Unfortunately, you’ll never know the personal experience of having Narcolepsy just like I’ll never know what it’s like to live with Parkinson’s or Diabetes. My biggest piece of advice I could lay on you would be to deploy love and sympathy. Be patient, and be kind — this disease is here to stay. Provide the most narcolepsy support you can.

Another suggestion I have is to be their biggest cheerleader. When they commit to changing their diet, salute them. When they try sticking to a regimented sleep schedule, celebrate it. Positive reinforcement can go a very long way.

 

Treatment Options

 

Below are some of the most common treatment options.

  • Medication
  • Regimented sleep schedule
  • Diet

For a more detailed list please visit my article: how to treat Narcolepsy.

 

Educating them on their legal rights

 

Under the Equal Employment Opportunity Commision, it is illegal to discriminate against someone’s disorder, i.e. Narcolepsy. Don’t be afraid to remind your loved one that they have legal rights to employment and are not powerless because of this disease.

 

Upgrading their mindset

 

Beyond diet and a regimented sleep schedule, the best form of treatment has been a positive attitude. I know, I know, it sounds cheesy but I had some serious negative self-talk going on for a while. I told myself I would never be able to work a desk job (false, that’s what I do now for work), I could never get someone to love me with this disease (complete bullshit), and I would never have the energy to get out of bed when I wanted to (I get up at 5 am every M-F now). These limiting beliefs held me back for over 3 years. They became self-fulfilling prophecies. It’s incredibly important when supporting someone with Narcolepsy to let them know that things can change. Change their diet, and you’ll minimize their EDS. Implement a regimented sleep schedule, and you’ll find it easier to stay awake at work. There is hope. 

One last thing, remind them that THEY ARE NOT ALONE. The biggest support you can provide while living with someone with narcolepsy would be being their biggest cheerleader. There are hundreds of thousands of us that struggle with this disease on a daily basis. Feel free to have them comment on this website or interact with others in this facebook group.

 

-Peter

 

Disclosure: Please note that some of the links above may be affiliate links. At no additional cost to you, I earn a commission if you purchase the item via the links. I recommend only products and companies I use or have reviewed and the income goes to keeping the site ad-free.

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