What is narcolepsy like?
Before I get into the body of this post I want you to check out the book: Wide Awake and Dreaming: A Memoir of Narcolepsy
Several people have suggested this book to me. One even called it “The Bible of Narcolepsy”. He claims that there is no better resource out there that relays to others what living with N is like. Julie portrays how this disease affected her life in the most beautiful way possible. I highly, highly, highly recommend this book as a resource before you try anything else.
On with the blog post……
I’ve always struggled with ways to explain to friends and family members how Narcolepsy effects me on a daily basis, or what is narcolepsy like. It’s ranged from “my brain is broken” to “I don’t sleep like a normal person.” I felt like every explanation I gave fell short on fully portraying how this disease makes me feel.
I felt as though I was doing a disservice to the sleeping disorder community by not taking the time to properly promote awareness of this disease.
In this blog post I’ve fleshed out some of my most common descriptions for the daily effects of N on me, the most common ways I explain the science behind the disease, I’ve surveyed a handful of people through Facebook to contribute their descriptions, and provided some metaphors I use to describe dealing with this disease.
My most common descriptions:
“My brain can no longer regulate the sleep/wake cycle on it’s own.”
“I’ve lost the ability to stay awake during the day and sleep soundly at night.”
“The process my body uses to stay awake and remain asleep are permanently damaged.”
The science behind it. (As we currently understand it.)
For whatever reason, our brains have lost the ability to produce a protein in the brain called Hypocretin/Orexin. The process isn’t fully understood but scientists have concluded that the inability to use and regulate this protein destroys a person’s natural ability to regulate their sleep/wake cycle.
Here’s a direct quote from the article:
“Many researchers theorize that the sleepiness of narcolepsy is a consequence of “sleep state instability,” a condition in which the thresholds between wake and sleep are easily crossed, resulting in both fragmented wakefulness during the daytime and fragmented sleep at night.”
Currently, I’m seeing a Naturopathic Dr. go over alternative treatments for managing my Narcolepsy. Upon seeing him for a few weeks he left me with this metaphor:
He believes that my body has been compensating by perpetually producing Cortisol as a way to keep me energized. He equated it to the metaphor of a car stuck in the mud with its wheels continually spinning. The wheels are my body’s attempt to produce “motion” or energy but nothing happens.
One of my favorite videos that depict people talking about living with N:
Here’s another video I’ve found helpful to show others:
Favorite submissions from the internet:
What is narcolepsy like?
“It’s not that my battery is low and needs to be recharged, the problem is that my battery is broken and won’t take a charge.”
“I always feel like I haven’t slept in 72 hours, literally every single minute of every single day.”
“My tired is the equivalent of you staying awake for 48-72 hours; this is how I constantly feel. When I have an episode, for you, it would feel like not only being awake for that amount of time, but also being drunk, incoherent, and unresponsive.”
“My body may be physically rested by sleep but my brain never is. My thoughts are constantly focused on when I can sneak in a nap.”
“I ask people if they’ve ever tried to take a nap and had really intense/realistic dreams the whole time and then woke up feeling even more exhausted than before. That’s how sleep is when you have narcolepsy.”
“The fact that sleep deprivation is a form of torture. We’re constantly sleep deprived and always will be :0”
One of the most common metaphors I use I like to call the “NyQuil Situation”
When ever I’m asked what is narcolepsy like? I usuallly respond with something like this..
Imagine that today, and every day following that day until you die I followed you around with a nice tall bottle of Nyquil. Next imagine that every time you felt overly stressed, ate sugary foods, ate simple carbohydrates, curled up into a comfy position, or any other myriad of reasons would result in me telling you to take a sip from that bottle.
Some sips may be small, some may be an entire gulp. But you have next to zero control over how much I give you and during what time of the day I tell you to drink. This is what Narcolepsy feels like at times. It’s the proverbial cloud that’s always hanging over us. The dread that the “NyQuil” can just turn on at any time for us and doing anything unhealthy will almost certainly trigger it.
Even with all the use of these metaphors and explanation it still can feel like words fall short.
People don’t comprehend what waking up 4 times in a night, in perpetuity, feels like.
If people want a visual of what my N feels like at night I’ll show them my nightly sleeping reports:
I hope that this post provided some value to you. I know that having a clear and concise of articulating this disease to others has helped take a load off my back.
Feel free to use any of these metaphors to help to describe this disease to others. If you have any more favorites please add it to the comment section below.
P.S. Be sure to check out Julie Flygare’s Book It’s the best resource around for this.
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