How I Work with Narcolepsy

Posted by on Jun 26, 2014 in Awareness

By Hannah Naude

Hannah Devyn Facebook-20140410-010516

Photo: Krisha Craven Photography

Wake Up Narcolepsy asked to write another blog (see www.wakeupnarcolepsy.org/saving-marriage-narcolepsy/), updating everyone on my and Devyn’s life right now. I am incredibly grateful to WUN for sharing our story and asking me to share even more. Unfortunately, chapter two is pretty uneventful. Our life seems perfect right now, and that makes for pretty boring writing. I’ll use that excuse for being slack on my own blog (www.narcolepsyandthequad.wordpress.com) and a reason to write something a little different here.

I’ve been receiving overwhelming interest in how I manage my job and narcolepsy. I work full-time on nights as a registered nurse (RN), dote on my loving husband when I’m off, and hang-out with my step kids every other weekend, all while dealing with that nagging, obnoxious narcolepsy.

It hasn’t been easy and I continue to have my ups and downs. I’ve even had to take two weeks off under the Family and Medical Leave Act (FMLA) after I was first diagnosed with narcolepsy. But I’ve picked through several factors of my habits and work environment that positively impact my ability to be a great nurse and keep my narcolepsy tamed. Here are some ideas that might help you.

Don’t Be Hardheaded – Take your medication! It’s true – nurses make the worst patients. I was hesitant about taking my stimulants when I was first diagnosed. I was also hesitant when I first started my sleep medication. But I finally realized that if I wanted to stay alert and make it through the night, I HAVE to take my medicine. For some, it might just be finding the right medication. Don’t give up. Nag your doctor if you have to, to find what works.

Snack – A heavy meal can cause heavy eyes. It’s especially bad in those afternoons right after lunch. I find that snacking throughout my shift, instead of one big meal, keeps me awake and alert.

Work Nights – It has always been easier for me to stay awake at night than during the day. I think a lot of PWN might find this to be true. But a word of caution: flipping your days and nights frequently could exacerbate your narcolepsy. If you find working nights easier, then stay devoted to it.

Keep Moving – I am constantly on my feet. Even when I’m not busy, I remain on my feet. I chart (complete my patient records) standing rather than seated at a desk, and take a walk when I feel sleepy. The worse thing I could do is sit and give in to sleep. If you have a desk job, find every excuse to stand, stretch your legs, or do a few jumping jacks.

Educate Your Coworkers – Be open about your condition, educate your coworkers on narcolepsy and how it affects your life. I may be biased, but I have the best coworkers. They are quick to start up a conversation with me when I get sleepy. They take a walk to the drink machine with me and even make a cup of coffee for me. Educate your coworkers in how they can help!

Use tips you find helpful, tweak them, or add more. Please share what works for you!

 

Think you or a loved one might have narcolepsy? Learn more at www.wakeupnarcolepsy.org/about-narcolepsy/could-i-have-narcolepsy/

3 Comments

  1. Normaree Harris-Lee
    June 27, 2014

    Thanks for sharing your story , you guys are a beautiful couple. I have been living with narcolepsy for years and years , I was finally diagnosed with it 16 year ago. I thank God for the diagnosis. I am also thankful there are those who understand what I am going thru and are there to listen if needed.

    Reply
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    July 24, 2014

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  3. Amanda R.N.
    August 22, 2014

    Hey!! I’ve recently started trying to find information about narcoleptics who stay up at night rather than during the day and haven’t had much luck so far. You seem to be confident that many pwn have this habit and I was wondering if that was from personal experience or if you found info about it on the net. Either way I’d like to know. It’s very disheartening to have everyone around me try to tell me it’s just that I WANT to stay up at night and that if I just “TRIED sleeping at night” I’d get back into the normal swing of things. . . which is totally not true. Anyway, thank you for posting and hope to hear back from you (email [email protected]) Thanks!

    Reply

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