When Sleep Disorders Go Unnoticed

An estimated 50 to 70 million Americans chronically suffer from a sleep or circadian-related condition (Project-Sleep). And it turns out I am one of those people. However many sleep disorders go undiagnosed or unnoticed simply because people don’t realize they have them. I was one of those people for so many years of my life. I wasn’t diagnosed with narcolepsy (without cataplexy)until the winter of 2015. But I was having symptoms, that I can remember, for several years prior to that.

Growing up, I was that teenager that slept until noon and had to have my parents force me to wake up, get out of bed and do something productive with my day. Yes, many teenagers sleep until noon. I mean why wouldn’t they? They have no responsibilities.

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And yes, sometimes I would go to bed much later than socially acceptable at that age, leading me to sleep until noon. But, sometimes I would go to bed at 10 pm and still was able to snooze and snooze until also much later than socially acceptable. I never thought anything of it, though. But I had created a reputation for myself in my family as the girl who sleeps the day away. I tried hard not to carry that reputation over into school, but alas, it happened. In my senior year government class, for example, there was one time where I fell asleep (in the front row, mind you) and hadn’t realized I fell asleep until my sleep talking woke me up. I sat in the middle of two girls who looked at me and kindly said while pretending they weren’t extremely confused, “Are you ok? Were you sleeping?” See, it wasn’t normal to sleep that much during school. It really wasn’t the cool thing to do.

When I went off to college, I realized that I could nap whenever I wanted and wouldn’t have my parents waking me up every 5 minutes telling me to get up and sweep the kitchen or some cliche chore that they made you do just so you were doing something. So when I went to college I was like…wait I can nap in freedom? Whenever? That’s the American dream! And as a true patriot, I lived out that dream. But, I never realized that I napped a lot more than some of my other friends did. I napped through some evening classes and didn’t care because my body was so tired.

There are many stories from my college years that I realize now were not normal….Yes, sometimes students fall asleep in class (late nights doing absolutely nothing with your friends or alcohol often caused this), but not as often as I did, it seemed. The looks I would get from my roommates and friends when I either slept in past my class or when I told them how I kept falling asleep in class, that look is definitely a judgmental one even when they act like they aren’t judging you. It ain’t a good face.

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One time during my freshman year econ class, I apparently fell asleep. I say apparently because I didn’t realize it until I jerked awake suddenly (are you noticing a pattern here?) I looked at my two friends sitting next to me and said “why didn’t you wake me up?” And they said “because you were snoring, but like a cute snore. We didn’t want to wake you.”

I also specifically remember my senior year, trying so hard to force myself to stay awake during my Communications Law class. And this wasn’t because the thrilling content of comm law didn’t have me on the edge of my seat and it wasn’t because of a lack of effort to pay attention on my part. I remember after a few classes of dozing off in the back of the room, that I made an effort to move to the front row. I told myself if I sit in the front, there’s no way I can’t pay attention therefore I would stay awake. Sit in front + pay attention = stay awake. Basic math, right? Well I was never good at math. I had to force my eyes to stay open. It was painful, honestly. Like, physically painful because my eyes would be so incredibly heavy and I had to actively out effort into making sure they didn’t close right in front of my professor. And the thing is, this class was my first class of the day, and it was at 2 pm. So it’s not like I was waking up at 6 am for an early class. I was easily getting 9-10 hours of sleep each night, if not sometimes more than that. So I was getting enough sleep, I was making full effort to pay attention in class, yet I still struggled to stay awake.

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After graduation and convincing myself that the college life was the cause of my exhaustion, I got my first full time job. It was during training one day where I was literally dozing off while a colleague was training me that I realized this was a problem. But yet, I didn’t realize it was a problem that could be diagnosed. And I wasn’t sure how to solve my problem. I also had other health issues to focus on so my sleepiness took a backseat.

Actually, the only reason I got the diagnosis for narcolepsy was due that other health issue I had: my chronic daily headaches. The PA I had been seeing for a couple of years who had been with me through each treatment that I had tried and that had failed me, suggested I do a sleep study to see if I had sleep apnea (since I consistently wake up with headaches, she thought maybe I wasn’t getting enough oxygen during the night.) After the sleep study, my PA pointed out to me that I didn’t have sleep apnea, but surprisingly enough, I had narcolepsy w/o cataplexy. She explained that even though this was not expected, it was actually good to see test results that didn’t show as “normal” because i finally had some answers. I finally had reasons for all of the above scenarios. I had a reason for falling asleep during classes, for sleeping in until noon and for dozing off during a full time job. I finally understood why.

It’s extremely frustrating to feel symptoms and have no idea why they’re happening and have nothing to connect them back to. And to be honest, I was completely ignorant to sleep disorders in general and it never even crossed my mind that I might have been living with one. If it weren’t for my PA suggesting that sleep study, I’m not sure when I would have found out I had narcolepsy. Perhaps I still wouldn’t know today.


The message here is that it’s so important to learn the signs of sleep disorders, because sleep disorders are invisible and difficult to detect. Sleep health is much more important and impacts our overall health more than most people realize.

Take a look at this website, Project Sleep, to learn more about sleep conditions/disorders, how to detect symptoms, and what to do if you think you may have a sleep condition/disorder!

 

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Things I’m Good At, Thanks To My Chronic Headaches & Narcolepsy

 

I’m really good at:

  1. Sleeping. My spirit animal is sloth.
  2. Making plans and then backing out last minute. Just because I hate doing it, doesn’t change the fact that I’m awesome at it.
  3. Collecting. I collect prescriptions, vitamins, test results, and doctor business cards
  4. Talking. About anything–doesn’t have to be health related. I’m just really good at talking.
  5. Showing compassion. Having endured years of chronic pain, health issues, emotional roller coaster rides, mental hardships and more, I find it really easy to feel compassion for other people and their journeys and struggles. I also just really like seeing people smile, so that’s more motivation.
  6. Surprising people. With my unexpected knowledge of various medicines, methods, symptoms and diagnoses. I promise I won’t walk in and pretend to be your doctor though.
  7. Enjoying time by myself. Because of how often I have to cancel plans or stay in and rest, I’ve learned how to truly enjoy and appreciate my own company. It actually kinda confuses me when people say they don’t like spending time alone. Like–I think I’m super cool, why wouldn’t I want to hangout with me?
  8. Picking myself up after a fall. More often than not, I’m the only one who can get myself up again after I’ve taken a hard fall in my health journey. Everyone will fall down in life, but we only truly live when we’re getting back up again.
  9. Managing pain. I don’t like to toot my own horn, but I’m pretty damn impressed by myself and my strength. I have continued so many activities while enduring my worst-pain level headaches/migraines and I never know how I did it once it’s over.
  10. Really enjoying life in all of it’s beauty. Life will never be full of only sunshine. There will be storms and we will get rained on. But each time the sun comes out, my smile gets brighter and my love for this world gets greater. Enjoying the simple things in life, putting more of my time toward seeing people who lift me up and doing more of what sets my soul on fire are all things I have seen myself get better at doing.

Thursday’s Tips & Tricks: Happy Napping 

  
I know that I need to start taking my own advice, especially when it comes to how long I nap. Because even though I know it’s not good for me to nap a long time, I just can’t betray my bed like that 😁
But if you find yourself wanting to treat your body better, definitely take a look at this cute little graphic that shows the healthy amount of napping time needed! 

  

Tips and Tricks: Resource Pages 

  
Recently I’ve added three new pages to my blog: resources pages for headaches/migraines, narcolepsy, and food allergies.
I went through all the resources as I was choosing which were most beneficial to share (there’s a lot, because there’s so much helpful info out there!) and realized that I wasn’t even aware of half of the info/websites/etc that I shared. That means that there are so many resources for us spoonies to take advantage of: clinical trials, foundations and organizations, blogs, support groups, fact sheets, and so much more! 💻📋📝 I strongly urge you to visit some of these resources every week or so because there’s always new info for us to take advantage of. We need all the help we can get, might as well take advantage of the free help! 

Beautiful Irony: A Spoonie Takes on the Town 

   
Finding it ironic (but ironically beautiful) that I felt well enough and excited to go out on #NarcolepsyAwarenessDay 😌👍🏼 My lifestyle now is so different than the lifestyle I was able to lead a year ago in college. Not being able to adventure out every weekend anymore due to health shenanigans sometimes makes me sad, but it also makes it much more exciting and gives me more to look forward to when I actually make it out now. 💃🏼 

We have to take advantage of each and every day that we feel good enough to spend time with our friends and family and when we feel good enough to embrace our choice of fun.

 

Sleep Awareness Week Day 1: Get Some Sleep, Y’all! 

  
As a spoonie with narcolepsy, I very much so cherish my sleep. Sometimes that sleep happens at noon, sometimes it happens on the floor, sometimes it happens under my comfy cozy blanket. It’s hard to get myself to go to sleep, when I have so many tasks to tackle each day. I’m sure you all feel the same way. Our days are so packed that we try to jam everything in and we end up losing sleep because of it.

Let’s all do our minds and bodies a favor and get a good 7-9 hours of sleep tonight. 

Shhhhh! If you listen closely, you can hear your pillow calling your name 💤

Spotlight Saturday: Describing What It Feels Like To Have An Invisible Illness 

  
Again, the mighty site does a superb job at sharing stories that raises awareness along with supporting people with disabilities and illnesses. This piece has people describe what it feels like to have an invisible illness. As a person who has an invisible illness myself, I know how hard it can be to describe to others and how hard it is for some of my friends and family to understand how I feel. This piece does a great job at helping spoonies feel like they’re not alone while also helping others understand a little bit more about how it feels to be someone suffering from invisible illness. 

Click on the link below to give it a full read! 

Describing What It Feels Like To Have An Invisible Illness

What’s the Word: Generate

  
To cause to arise or come about.

Any spoonie knows that a lot of the journey involves waiting around for a diagnosis, test results, treatments, answers, and seeing if treatments are even working. Sometimes (too often) doctors can’t figure us out. 

We wait around for positive things to happen in a world where we run into so many road blocks.

Sometimes, though, it’s up to us to take control of our own journey. Be the captain of your own ship, as they say. 

We need to generate positivity in our lives. If we wait around for the positive things to happen to us, they rarely will. 

This is your journey–you’ll be amazed what you can do with it when you put your back into it.