"Narcolepsy is a sleep condition which is thought to either be a neurological or auto-immune disease. In people with Narcolepsy, they are missing Hypocretin, the chemical in your brain that controls wakefulness and the cognitive ability to go through all of the sleep cycles. Having Narcolepsy essentially guarantees excessive daytime sleepiness, sleep attacks, insomnia, and for some of us, cataplexy. Cataplexy happens to me when I laugh too hard; my knees give out and I fall to the ground. Excessive daytime sleepiness is the symptom I struggle with the most. I have to take Nuvigil in the morning, it helps me to stay awake throughout the day and prevents sleep attacks. Although it doesn’t prevent sleepiness one hundred percent, it allows me to be more cognitively aware and I have to take less naps. When that is not enough, which it usually isn’t on an intensive school day, I can take Adderall throughout the day as well. My most important medication is Xyrem. Xyrem is an extremely potent sleep medication. It was a game changer for my treatment. It is a liquid I take at bedtime that makes me drowsy within twenty minutes, and then I wake up in the middle of the night to take a second dose. With Xyrem, you can essentially control your hours of sleep, and when it wears off in the morning, it was the reverse effect; it actually helps you wake up. These medications affect me in a way that allows me to function in the way “normal” people do. Basically, I can be awake during the day and sleep at night, which if I wasn’t medicated, I wouldn’t be able to do. I’d be considered nocturnal without medication. Narcolepsy has affected my everyday life by making it extremely difficult to get out of bed, difficult to do well in school, difficult to show emotion, and most of all difficult to be understood. Because of having Narcolepsy, I have struggled to have the social life most high school and college kids have. I have struggled to trust that people will look past my condition and want to befriend me even though a lot of times I have to cancel plans because I’m too tired. I have struggled to deal with all of the extra symptoms that come along with the disease. These extra symptoms include, but aren’t limited to: depression, anxiety, feeling hopeless and alone, feeling completely misunderstood, and being treated like you’re lazy. Usually I don’t tell people I have Narcolepsy. I’m pretty good at managing my symptoms. When people become closer to me and they start realizing that I’m “different,” then either people feel extremely bad for me and want to do anything they can, or people think I have no personality and that I’m uninteresting, boring, lazy, or lying to get sympathy. Narcolepsy doesn’t necessarily make me who I am, but it definitely affects my ability to be who I can and want to be. The difference from high school and now is that I don’t let the disability stop me from reaching my goals, and I certainly don’t let people speak poorly of me. If people do speak poorly of me or my abilities, I will stand up for myself and I will no longer let their words come between me and what I wish to obtain. I can accomplish anything now due to the struggles of having Narcolepsy. Thankfully, I am able to carry that mentality into just about anything I do now. That’s how Narcolepsy has helped make me who I am. The only time I am embarrassed about having Narcolepsy is when people tell me I am lazy, and I am genuinely afraid to explain that there is a reason. Nowadays, less people call me lazy though, because there is more and more proof coming from me that I am not lazy at all. Its also a little embarrassing when people make fun of me for having no personality. Those who know me well know that I do have a personality; they also know that I am exhausted when I don’t show much of my personality, which is a lot of the time and I cannot control how often or severe it is. I think society has painted the picture that everyone needs to push their bodies to their limit. We all seem to think that every waking moment must be spent cognitively aware and functioning. Most people have a picture of Narcolepsy that is an old person nodding off while they’re watching TV, but some Narcoleptics are diagnosed before they are even five years old. I can’t wait for the day that society will get it out of their head that everyone has to function the same way. When that day comes, I will be able to come off all medication and let my body be the way it intends: asleep during the day and awake at night. If that day never comes, it would at least be nice for there to be a drug that actually cures Narcolepsy. Most people believe it is a mental illness that should be treated with counseling and that it is hormonal, and one day we’ll just grow out of it, that’s not the way it works. Narcolepsy is the same as having Type 1 diabetes, or any other condition that is due to the absence of something in your body that cannot ever naturally be replaced, only treated. I often get the question, “Well, have you tried turning off your television before bed, drinking coffee, taking melatonin, taking Benadryl, Nyquil, Tylenol PM?” Society just won’t accept that this condition is much more serious. It is the absence of a chemical from your brain, not an inability to clear your mind before bedtime or being too weak to stay awake during the day. It is so important for people to just be who they are because if you pretend you are something you’re not, or you ignore your own health, it will lead you down a miserable road where every moment is spent in regret and attempts to explain yourself. No one should have to explain themselves; acceptance should be as easy as breathing. The most important thing at the end of the day is yourself, you’re all you really have. So there is no greater importance than being one hundred percent you, even if you do struggle to fit societies’ standards. Who is society to judge who you are or what you’re capable of anyway? Even though I have this disease, I am capable of anything anyone else is."
– Erin Smith
Posted by kate jacobsen on 2015-01-23 04:06:48
Tagged: , narcolepsy , kickstarter , medications , humanexperience , sleepdisorder , blackandwhite