Spilling that Sleepy Time Tea
“I’m tired.”
A phrase most of us hear daily and have definitely used in a few different contexts. According to my handy dandy Google search, the word “tired” can mean:
In need of sleep or rest
As in: I’m tempted to take a nap in my car at lunch because I’m so tired today.
Bored with/fed up with
As in: I am so tired of people saying pineapple shouldn’t go on pizza.
No longer fresh or in good condition
As in: The Uggs you used to wear in middle school looked tiiiired.
Gave ya some examples in case you needed it used in a sentence. :)
Today though, my friends, we are going to focus on the first definition — needing sleep or rest.
Most people who have been in my life for a while or that I’m close to know that I have a chronic sleep disorder called Narcolepsy. For those of you who are unfamiliar or are quickly jumping to the wrong assumption that it’s the same thing as epilepsy, no need to worry. Hales is here to educate and inform.
Narcolepsy is excessive, uncontrollable daytime sleepiness.
It’s an incredibly overlooked, under diagnosed disorder and is more common than you’d expect. Though I eventually plan to dive deeper into my own experience with the disorder in a future post, I figured I’d start out with some of the facts.
So, today we’re going to bust some myths and spill some tea on this chronic sleep disorder.
*Cue Sleeping Beauty in Ghost Busters uniform because why not?*
Masterpiece drawn by my girl, Dilly Dalian.
All right, y’all. Let’s bust some myths.
Myth 1: Narcolepsy is a comical disorder that has been portrayed 100% accurately in the movies.
I remember watching Rat Race as a kid and the one character was so excited to be ahead of everyone else until all of a sudden, he’d stop dead in his tracks and fall asleep standing up. Though falling asleep mid-conversation is something that can happen, it’s not necessarily a daily occurrence. Plus, narcolepsy comes with an array of not-so fun symptoms in addition to all of the annoying sleepiness.
Myth 2: People with narcolepsy fall asleep all the time and can sleep whenever.
Even after being diagnosed with Narcolepsy, there was about four years where I was free balling the nighttime without a medication. Once I was put on a medication that puts me out at night, I realized how little I had been sleeping and how often I was waking up at night. Though people with narcolepsy struggle with extreme sleepiness during the day, a huge issue also experienced is disrupted nighttime sleep. It’s truly doing the most to make sure we aren’t getting sufficient sleep.
Myth 3: Being able to nap/sleep whenever would be nice.
False, my friend. So incredibly false. I was watching Family Feud not too long ago (last night. It was last night.) and one of the questions was something along the lines of “Where is the worst place to fall asleep?” and to no one’s surprise, “Work” was the number one answer. The incredibly strong physical feelings that come along with a sleep spell (or micro nap - whatever you want to call it) are so uncomfortable and unwelcome. Imagine having to excuse yourself from a meeting at work, so that your will eyes quit going out of focus, your speech will stop slurring and you don’t fall asleep on the table in front of your colleagues. It’s definitely not a luxury, especially when you cannot control the timing of your next micro nap.
Myth 4: Sleepiness = laziness.
I was never great at math, but I’m confident in calling some bullshit on this one. Go without sleep for about 2-3 days straight and that’s how a person with narcolepsy feels every day. It’s something we cannot control and is definitely not a sign of laziness. Besides, narcolepsy aside, one thing I learned a while ago during an internship in college from my mentor, the wonderful Erin, if you see someone who you know is normally a hard worker struggling to stay awake, maybe you should ask if he/she is okay. Maybe he/she is having a hard time at home or isn’t feeling well. You never know what someone is going through, so before assuming the sleepiness automatically means laziness, maybe check on the person first.
And, last but not least.
Myth 5: There’s a cure!
Though scientists are learning a lot more about this neurological autoimmune disorder that causes the gradual loss of neurons called hypocretin (or orexin), they haven’t quite found a cure for it yet. You cannot detect it from a blood test and the experience is incredibly different for everyone. So, what might work for one person (medications, etc.) may not work for the next person.
Well there ya have it. Five high-level myths about narcolepsy. If you’re ever interested in learning more, I highly recommend the book “Wide Awake and Dreaming: Memoir of Narcolepsy” by Julie Flygare. It’s an incredibly accurate and detailed book that helped people in my life understand truly what I’ve gone and continue to go through daily. s
Available here on Amazon, if you’re interested in a quick, but informational read. :)
Shout out to JF for her incredibly helpful website that inspired me to write this post as well.
For the record, I love talking about my experience with narcolepsy since most people aren’t very familiar with the disorder and I still plan to write a future post about my own personal experience with it. In the meantime though, please feel free to ask me questions and I’d be happy to spill some more of that Sleepy Time Tea. :)