Narcolepsy – Am I Sick or Healthy?

by julie on June 29, 2014

Julie Flygare REMRunner narcolepsy spokesperson author wide awake and dreaming narcolepsy memoir narcoleptic project sleep health sleepiness runner inspiring narcolepsy advocateIf sickness and health are two opposite ends of the spectrum, then where do I fit in? The other day, I battled excruciating eye-burning sleepiness that felt like pure torture/hell. That same day, I also ran 3 beautiful miles in the golden California sunshine.

Am I the sickest healthy person you know or the healthiest sick person?

I don’t fit neatly into society’s concepts of illness or health and I refuse to be defined by either. I live in awe of the dichotomy and try to trust that sunshine is around the corner, if only I’m willing to re-open my hazy eyes, again and again.

{ 8 comments… read them below or add one }

Jennifer July 1, 2014 at 5:45 am

You vocalized so well how I feel most days! It’s also a struggle that many in my family view me as ill.

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Rebecca July 1, 2014 at 1:19 pm

Thank you for this! I have IH, not N, and I REFUSE to call myself sick or ill. I have a condition that I live with and power through, not suffer from. When I have the flu or a bad sinus infection, then I can be sick 🙂

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Donna McVey July 10, 2014 at 11:03 pm

This made me laugh, Julie . I think of this contradiction often. Today, I had a sleep episode, attack, what do we call them? OK, I was hijacked by sleep. I overslept this morning, causing me to be embarrassed and late for my first client. By the time lunchtime came, the sleepy ninjas were out to get me and I couldn’t function. I set my phone alarm for 40mins. 1 hour later a phone call awoke me from the reality dream state in which PWN attempts to sleep. Waking with the ‘woolly-hat-on-my-brain-drunk’ feeling’, I was determined to follow through my plan of cycling to and from work in the glorious Scottish sunshine.
I took my modafinil, hopped on the bike & thought, “I’ll show narcolepsy who is boss! ” 80 mins later I arrived at the yoga studio for my personal training client, followed by a short cycle to teach a 45min Spin Class (delirious at this point, lol) followed by a 90min cycle home. On the way home at points I wanted to cry, but like you I have run marathon and we know how that goes! I should be in bed asleep right now, but I am bug-eyed drugged awake with a pounding headache. I know I will also pay for it tomorrow and have to take full dose of modafinil just to get through the day. I have a full schedule til mid afternoon and I will probably be hijacked by sleep more than once, the muscle soreness will be excessive, the fatigue will double over the next few days, but I won’t give in! Some days the wake/sleep hijacker will win, but today was not one of those days & it was a beautiful summer’s day! I wanted to feel normal!
We are not sick, we are simply living in the twilight zone that is PWN ! #narcolepsynotalone

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Nick July 29, 2014 at 5:24 pm

Honestly, I found being diagnosed with narcolepsy a positive and exciting event! I’m in my 30’s, very physically active, and fairly successful, so when I was diagnosed I thought to myself, “I was already very happy with who I am and what I’ve achieved, and now I get to take an energy pill… Awesome!”

I view my sleep spells (as I call them) as barriers that I must persevere through in order to move on. Even though at times it is like an unrelenting force that requires an unbelievable amount of willpower to prevent, I press on. The introduction of modafinil has lessened the weight of those barriers, so now my willpower and determination can be directed at more constructive activities rather than maintaining alertness!

I never thought I’d ever be able to step on a plane without my brain telling me to shutdown the instant I sat down. Now I can stay awake and read a book, do some work, or watch a movie. In my world that gains me over 100 hours a year! When you view time as one thing you have the least of, how could you see such a diagnosis other than awesome!

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SleepNow Hopefully August 8, 2014 at 9:21 am

“Burning eyelids”

Made me smile because I’m so used to it that I never thought about naming it.

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Brendan Downs February 16, 2015 at 4:26 pm

Being 15 and having to deal with narcolepsy is really hard. i have NO friends not even one friend to talk to. I don’t understand why was diagnosed with Narcolepsy and i get made fun of it.
So how do you other people that have narcolepsy deal with it?

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kelly March 4, 2015 at 3:23 am

Son gets the ok to donate plasma, but they refuse because having Narcolepsy/Cataplexy would upset the others who are donating plasma. A WTF moment. He is not sick. The hurt and the pain son feels dealing with stuff like this. It affect the whole family.. Thank you Grifols/Biomate USA

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Jane Maxwell June 8, 2015 at 9:59 am

Brendan I feel so much sympathy for you. Some people are very cruel, as you get older you will make friends because they will be more mature and understanding.I was lucky that I didn’t get the full monty of symptoms until my 50s. You will find that with control by drugs I take Venlafaxine for cataplexy ,modafinil to keep me awake and as small a dose of mirtazipine to get me some sleep. Now don’t quote these drugs everyone is different , there are different products and different dosages. These make me function ok and I can travel on my own to far off places when I once was unable to laugh, like I had to turn away and try to stop laughter. Brendan I do hope you find the right medication ,diet and exercise so it won’t seem as though the symptoms are in charge.Read Julie’s post, you will undoubtedly have to learn to live with a foggy head ,lack of sleep,falling asleep in the movies, TV , a boring lecture at times , but as you gain confidence those teasers will diminish, i do hope so. You are still you, remember that.

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