Alli Needs A Nap
My Experience with Excessive Daytime Sleepiness
I have excessive daytime sleepiness (EDS). This is undeniable. I have been struggling with this for fifteen or so years. I’m more than just regularly sleepy or tired. I have uncontrollable urges to sleep during the day. At work, I feel like my brain is full of cotton, and it is hard for me to remember what I’m working on. It doesn’t matter where I am, really. If I get the urge, I know I need to close my eyes and rest my brain.
EDS is a symptom of a larger issue. We’re in the process of figuring out what condition I have, but we’ve narrowed it down to two possibilities. The sad part of my story of diagnosis is that it has taken me fifteen+ years to get it right. I’ve seen more specialists than I care to admit. My fatigue is so profound that I have feared the worst — cancer, brain tumor, gastrointestinal parasites, and more. Every specialist I see has checked me over, and we review all of my symptoms. Every specialist says, “Well, you don’t have _______. Good luck!” These responses have been both positive and discouraging. I’m glad I don’t have cancer, but leaving every doctor’s office still unsure of my underlying problem has taken its toll on me.
The toll is physical, mental, emotional, and at one time it was spiritual. Physically, EDS looks like fatigue. I can physically feel my body crashing at certain times in the day. I tell people I trust, “Hey, I’m crashing right now.” They understand that I need to get to a safe napping spot a.s.a.p. On my face, EDS appears bored, lazy, and uninterested. At 8:30am, 1:00pm, and 4:30pm, EDS looks like a 90 minute nap.
Mentally, EDS looks like short term memory loss and confusion. I don’t know how many times I’ve started a task with every intention to finish it but found myself staring blankly at my calendar or a notepad where I started drafting a to-do list: “Things I MUST do today!” I’ve missed my exit on Interstates and city streets more times that I can count. Sometimes it makes me late for work and other appointments. I’ve found these mental EDS days come in clusters. When I’m dealing with a bad mental period, I feel useless.
Emotionally, EDS looks like depression and anxiety. Think back to your college days when you were prepping for finals: all-nighters that went on for an entire week or more, cramming four months’ worth of information into one small space of your brain, and focusing and losing focus over and over. Do you remember how that felt, emotionally? Think about how the worst fatigue of your life felt in your body and brain. I feel that desperation most days. EDS is hard on my emotions. I cry a lot. I cry because I’m so confused that I don’t know how to make a decision. I cry because it makes me sad that I can’t focus on drafting an email. And I cry like a toddler, because, wholly — in every area, I’m so damn tired. (Video 1)
Ask my husband. This is me. I try sooo hard to overcome the emotional reaction to being fatigued, but sometimes I can’t. He loves teasing me with toddlers/napping gifs. I don’t blame him. This is me.
Spiritually, EDS looked like defeat. It looked hopeless. I thought my fatigue was an underlying issue because of my depression, which was an underlying condition of my spiritual frailty and sinful state. What a sad place to be in. Thankfully, I don’t subscribe to that line of thought anymore. Now, I use my moments of weakness to rest my spirit. “Ok, I can’t contribute to this task right now. I’m just going to sit back and look at the trees outside. What a beautiful day.” It centers me. Now, EDS looks like reflection; to me, this is a huge blessing.
But what is Excessive Daytime Sleepiness?
It’s more than “sleepy,” as I described above. It’s more than tired, even. It’s a whole body problem. What I came to learn through some good ole fashioned internet research is that EDS may be an indicator of a real chronic illness, like an autoimmune disease.
I spend a lot of time online browsing blogs, medical websites, images, and joining communities to learn more about what makes me sleepy. Facebook and Instagram made the top of my 2019 “favorite things” list. Not because I am addicted to posting selfies and sharing memes. I have a much better reason for appreciating these platforms in 2019 and 2020.
Because for the first time in my life, I learned about EDS with narcolepsy.
I bet you’ve seen Rat Race with Rowan Atkinson’s character who falls asleep at any given time. It’s hilarious, it’s absurd, and its wonderful to laugh at. I remember seeing this movie over and over in my youth and laughing so hard at Enrico Pollini. I thought, “Wow, having narcolepsy must suck. I can’t imagine falling asleep like that.”
As it turns out, Hollywood’s portrayal of narcolepsy sucks. Consequently, I had no idea there were so many facets to this disease. What is portrayed in the image above is a comical generalization of a symptom of Narcolepsy called a sleep attack. It doesn’t really happen the way it looks here with Enrico Pollini. No wonder I had no idea what a sleep attack and EDS were.
Narcolepsy’s most obvious symptom is Excessive Daytime Sleepiness. It has four other key symptoms — of which, not every narcoleptic must have; but they must have EDS. To be clear, I absolutely have EDS. I score a 16 on the Epworth Sleepiness Scale (One), which tells doctors I’m abnormally tired during the day. But prior to 2019, I knew nothing about narcolepsy or excessive daytime sleepiness until I started seeing some ads on social media. Hollywood’s portrayal of a comical sleep attack certainly wasn’t informative.
From “My Own Private Idaho” (1991) and “Deuce Bigalow: Male Gigolo” (1999) to “Ode to Joy” (2019), representations of narcolepsy in films provide valuable insight into public perceptions and understanding of narcolepsy. For many individuals, these cinematic depictions may be their only exposure to the symptoms and impacts of narcolepsy. (Two)
The American Association of Sleep Medicine nailed it on the head. My perception of narcolepsy was highly skewed until I was 31. I never, ever thought to look into this interesting sleep disorder until Facebook and Instagram suggested a profile to me (for which I am eternally grateful). One day I was scrolling down my timeline, and a suggested group really piqued my interest.
I started seeing ads with this really cute logo of a shut eye in its lettering in August of 2019. This image to the left is the first one I remember seeing that resonated with me: More Than Tired.
Whoa. More than tired? Haven’t I been saying that for years?!
I clicked the link. I read the first three articles I found. That day I learned about narcolepsy, which is a neurological autoimmune disease. The feeling that came over me when I realized that the way I had felt for fifteen or more years was a real symptom of a real condition, and that I was (I AM) more than just tired… well, frankly, that was one of the most relieving and satisfying moments of my life.
I am not making up my symptoms or being dramatic about their severity.
It is as memorable of a moment as the falling of the twin towers, or my wedding, or of the learning of a friend’s death. I know where I was, what I was doing, and I remember exactly how I felt. I won’t forget it!
So I saw a doctor who specializes in sleep medicine. Right now all I know for sure is that I have EDS. I’m prescribed a common medication to keep me awake and alert during the day. My sleep specialist took me seriously because she knows I am not making up my symptoms or being dramatic about their severity. Wow wow wow. She wasn’t shocked at my stories, because she’d heard them before. She didn’t ask surface level questions like “what kind of sleep are you getting at night?” She didn’t need to ask that, because this specialist already had a baseline knowledge of what EDS is and how it affects people. Now I’m asking the questions, and I’m getting answers. The relief this whole experience has brought me is overwhelming.
I do not know how to thank the founders of More Than Tired. I know how to send an email or write a letter, but I don’t know how to express that their efforts for creating a website so easy to understand, that in such concise detail describes my primary symptom — I just don’t know how to say thank you for taking the time to do that. I’ll figure it out though. Maybe there will be a parade.
I still have a lot to learn about why I have EDS. It could be narcolepsy. It could be a brain injury. It could be sleep apnea or a whole wide array of other issues. In the meantime I’m going to keep educating myself. If you want to keep educating yourself about invisible illnesses, I encourage you to follow some profiles on social media. That’s how I started anyway. If you want to follow my narcolepsy journey — including my sleep study and my follow up REVEAL, click the links to read my stories. I’d love to have you follow along. If nothing else, it’s nice to be able to sympathize with people whose chronic illnesses we cannot recognize at first glance. Thanks for reading!
Images borrowed from Google Search and Referenced Below:
https://images.rapgenius.com/493690a7a95b551bd6eb487a14dc0018.533x400x1.jpg — image 1
https://www.facebook.com/MoreThanTired/ — image 2
Johns MW. A new method for measuring daytime sleepiness: The Epworth Sleepiness Scale. Sleep 1991; 14(6):540–5. — one
https://aasm.org/movie-narcolepsy-cataplexy-sleep-doctors/ — two
from Reality Changers. (2011) Youtube. “I take a nap here.” https://www.youtube.com/watch?v=PGXYJwl0-eE — video 1
