What Living With Idiopathic Hypersomnia Is Really Like

What Living With Idiopathic Hypersomnia Is Really Like

(I Fell Asleep While Writing This)
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Sleep is my drug; I can’t live without it, I can’t get enough of it, and I crave it every second of every day. To the average person, I might just sound like your typical sleep-deprived college student surviving off of very little shut-eye and numerous shots of espresso. How can sleeping too much be a medical issue? Many times I have been reminded how “blessed” I am that I have no problems falling asleep or staying asleep. Sure, I’m not saying I don’t enjoy dozing off moments after my head hits the pillow, but sometimes I want to be able to fully experience the world beyond the dreams that conspire in my mind. How can I live when all my brain and my body want is to sleep?

It’s called Idiopathic Hypersomnia. I’m guessing you haven’t heard of it, and I don’t blame you for not knowing about such a rare disorder. Everyone seems to know what insomnia is, so when asked what my disorder means, I usually refer to it as the opposite of insomnia; instead of sleeping too little, I sleep too much. Idiopathic Hypersomnia (IH) is commonly defined as excessive daytime sleepiness. My brain is constantly telling me to sleep, but even after hours and hours of resting, I often feel more tired than I did before. On rare occasions, I will feel completely awake, and it is the most amazing feeling ever, something that the average person might take for granted.

Even though my symptoms were not fully apparent until my teenage years, I have always been a tired person. When I was a baby, my mom couldn’t even breastfeed me because I would fall asleep before she got the chance. Once I got older, my tiredness was easily mistaken for laziness, which is ironic because people with IH are the least lazy people that I know. We want so desperately to be able to do what everyone else does, but often times, we just physically and mentally are not capable of keeping up with the busy day-to-day life. I did not find out that I had IH until I had a sleep study done the middle of my senior year of high school. Before that time, my family, friends, and teachers didn’t understand why I would cancel plans, turn in homework late, or sleep all afternoon and still all through the night. Receiving a diagnosis was one of the best moments of my life. Some people might not understand why that is, but for me it was an answer to my problems, and in some ways, it was a solution as well.

Now that I have been diagnosed, I have been on a stimulant called Modafinil. Although it often takes away my appetite, for the most part, it does a decent job of keeping me awake. However, mornings are still the absolute worst. I love mornings, but I often miss them because I can’t will myself out of my bed. Because of this, I requested that my school let me sign up for classes early in order to ensure that I didn’t have any early morning classes. I don’t know if my school didn’t understand the depths of my disorder because they had never heard of it, but I was not welcomed with understanding. In fact, I was told that there was only so much that could be done for me without risking me jeopardizing the system. Well, if you have ever been in college, I’m sure you know that the system is already pretty messed up, but this was just another situation where I felt misunderstood and hopeless.

Sleepy is not a synonym for lazy. I often imagine my life without idiopathic hypersomnia. I think of all the things that I could accomplish, all the challenges that I wouldn’t have to face, and all the mornings that I would be awake for. After I am done feeling sorry for myself, I move on to think about all the things I have accomplished, all the lessons I have learned, and all the relationships I have built not only despite of IH, but also because of IH. All I ask for is understanding. I’m not making excuses, and I’m not being lazy, but I am still trying to just figure this all out. It might take a few (or a lot) of naps along the way, but someday, I hope to get my mornings back.



If you would like to know more about IH, visit hypersomniafoundation.org

Cover Image Credit: Grace Vaughn

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8 Reasons Why My Dad Is the Most Important Man In My Life

Forever my number one guy.
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Growing up, there's been one consistent man I can always count on, my father. In any aspect of my life, my dad has always been there, showing me unconditional love and respect every day. No matter what, I know that my dad will always be the most important man in my life for many reasons.

1. He has always been there.

Literally. From the day I was born until today, I have never not been able to count on my dad to be there for me, uplift me and be the best dad he can be.

2. He learned to adapt and suffer through girly trends to make me happy.

I'm sure when my dad was younger and pictured his future, he didn't think about the Barbie pretend pageants, dressing up as a princess, perfecting my pigtails and enduring other countless girly events. My dad never turned me down when I wanted to play a game, no matter what and was always willing to help me pick out cute outfits and do my hair before preschool.

3. He sends the cutest texts.

Random text messages since I have gotten my own cell phone have always come my way from my dad. Those randoms "I love you so much" and "I am so proud of you" never fail to make me smile, and I can always count on my dad for an adorable text message when I'm feeling down.

4. He taught me how to be brave.

When I needed to learn how to swim, he threw me in the pool. When I needed to learn how to ride a bike, he went alongside me and made sure I didn't fall too badly. When I needed to learn how to drive, he was there next to me, making sure I didn't crash.

5. He encourages me to best the best I can be.

My dad sees the best in me, no matter how much I fail. He's always there to support me and turn my failures into successes. He can sit on the phone with me for hours, talking future career stuff and listening to me lay out my future plans and goals. He wants the absolute best for me, and no is never an option, he is always willing to do whatever it takes to get me where I need to be.

6. He gets sentimental way too often, but it's cute.

Whether you're sitting down at the kitchen table, reminiscing about your childhood, or that one song comes on that your dad insists you will dance to together on your wedding day, your dad's emotions often come out in the cutest possible way, forever reminding you how loved you are.


7. He supports you, emotionally and financially.

Need to vent about a guy in your life that isn't treating you well? My dad is there. Need some extra cash to help fund spring break? He's there for that, too.

8. He shows me how I should be treated.

Yes, my dad treats me like a princess, and I don't expect every guy I meet to wait on me hand and foot, but I do expect respect, and that's exactly what my dad showed I deserve. From the way he loves, admires, and respects me, he shows me that there are guys out there who will one day come along and treat me like that. My dad always advises me to not put up with less than I deserve and assures me that the right guy will come along one day.

For these reasons and more, my dad will forever be my No. 1 man. I love you!

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The Truth About Narcan, Insulin, And Who Pays For What

"Stupid junkies, I have to pay for my Insulin but they get Narcan FOR FREE. Can you believe that?"

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Naloxone.

Let's talk about it. Naloxone, commonly referred to as Narcan or Evzio is a "medication designed to rapidly reverse opioid overdose." According to the National Institute on Drug Abuse, Naloxone basically reverses the effects of an overdose.

As you see on Facebook, Instagram, Twitter, and every other social media platform in the world, "junkies" get indirectly bashed, undermined, and in a nutshell, told that they don't deserve a place on earth.

The most common argument used by "non-addicts" is "I have to pay for my Insulin for my diabetes, but they get Narcan for free? Wow, our government sucks and the system is a joke."

For those of you that don't know, diabetes is a disease in which the body's ability to produce or respond to the hormone, insulin, is impaired, resulting in abnormal metabolism of carbohydrates and elevated levels of glucose in the blood and urine.

There are two types of this disease: Type 1 Diabetes and Type 2 Diabetes that result from a variety of different factors. Diabetes can be acquired through genetics but can also be personally obtained through lifestyle, depending on the type. Aside from genetics and being born into a diabetic family, you may also be diagnosed with diabetes as a result of physical inactivity, high blood pressure, abnormal cholesterol, and being overweight. In other words, if you let your body go, don't work out or do some type of physical activity, let your high blood pressure go untreated, and eat unhealthy foods; you have a chance of developing diabetes.

Next, let's talk about prices.

On average, Insulin costs $200 monthly. This depends on the brand, personal insurance, coupons, and other factors such as organizations that help people get cheaper insulin.

Narcan nasal spray costs $130 for a two-time use. You can buy it at CVS Pharmacy (and other pharmacies) in states such as Ohio, Arkansas, California, Minnesota, Mississippi, Montana, New Jersey, North Dakota, Pennsylvania, South Carolina, Tennessee, Utah, and Wisconsin. Some of these states may require a prescription.

Now that you know that Narcan/Evzio isn't free, it's time to talk about other charges that are brought upon addicts when they overdose. If an ambulance is called, they have to pay for it. If they are sent to the emergency room, they also have to pay for that.

The idea that "junkies" get Narcan for free is something society has made up to make drug users feel even more guilt than they already do from having an addiction alone.

Believe it or not, most of us are addicted to something that can be fatal or cause illness/injury. If you eat processed foods or sugar ridden foods every day, chances are you have an addiction to sugar. The withdrawal that someone has from quitting sugar is similar to the withdrawal that one goes through from quitting heroin. You get a splitting headache, you have cold sweats, you are moody, and it makes you sick. If you drink coffee all day on most days and you try to quit, it results in an awful headache for a few days. The addiction to cigarettes and the withdrawal that people go through for that speaks for itself; we all know a smoker or an ex-smoker.

Instead of following social norms, degrading drug users and putting ourselves on a pedestal because we don't use heroin or another "hard drug," we should advocate for the health and stand up for each other. If you see someone on the street that you know is a drug user, pull them aside and pray with them. Help them find a better life. Recommend church, rehab, or any other ideas that may be at your fingertips to mention.

The moral of the story is this: we all have an addiction, hypocrisy is at it's finest thanks to social media, and we are all human. Walk a mile in someone else's shoes before you judge them. It doesn't cost a dime to shed light on someone's life, especially when they are in need.

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