Sincerely, Narcolepsy

Narcolepsy is an invisible disability that interrupts the normal sleep/wake cycle of 1 in 2,000 Americans. It is about as common as Parkinson’s Disease but is rarely ever diagnosed. Most people believe that sleep is controllable and that if you fall asleep a lot you are just a “sleepy person.” Pop culture has made fun of Narcolepsy in movies such as “Deuce Bigalow,” “Fight Club,” and “Due Date.” There is even an intended pun placed in Jay Z’s “Girls, Girls, Girls,” that says “Mommy’s a Narcoleptic always sleeping on HOV.” Lots of people joke about being Narcoleptic and tease those who may show signs of severe sleepiness. While Narcolepsy may appear to be fun to joke about in theory it is not so fun for those who have actually been diagnosed with it.

THE DARE

In 2007, I was a patent examiner at The U.S. Patent and Trademark Office. I kept falling asleep in the middle of trainings so much so that my supervisor pulled me into her office as told me that if I could not stay awake my job was in jeopardy. She told me a story of one of the supervisors who kept falling asleep the same way and he ended up actually having a sleep disorder. She recommended that I go get a sleep evaluation. Prior to this I had always been a “sleepy person.” I had fallen asleep many times while driving, while riding in cars, while teaching students, while watching movies, etc. I had tried all the things I could. I tried monitoring my naps, my food, my exercise and I tried to get more sleep. I scheduled the appointment with the neurologist as if it was a dare back at the supervisor who suggested something was wrong with me.

OVERNIGHT MATRIX

I entered into what looked like a hotel on the outside. It was like the doctors at Duke Medical Center had been running some covert operation at a secret location. The nurse placed these wire connectors all over my face and chest. I felt like I was plugging into the Matrix. I took two tests, an overnight test and Multiple Sleep Latency Test (MSLT). My overnight test was fine. The MSLT is what showed evidence of my issue. In a MSLT you have to stay awake for about an hour I think then they put you in the hotel room and cut off the lights. The doctors then monitor how fast you fall into sleep. The average person falls asleep and dreams in 30 minutes to an hour. I fall asleep and dream in 5 minutes. The results showed that I am falling too deep into sleep too quickly therefore I am unable to get restful sleep.

YOU’RE STILL ALIVE?

Several days after the sleep study I returned to the doctor to discuss the results. The first thing he said was “how have you been living like this all of this time??? You are not the person that can get sleepy while driving and make it to the next exit YOU NEED TO PULL OVER IMMEDIATELY.” I was like “wow! am I that bad?” Of course he said YES! It is a blessing that I hadn’t killed myself, a passenger in my car, or someone else on the highway. I had fallen asleep many times and woke up an airbrush away from large trucks or other vehicles. The doctor also asked me about my weight. Up until this point I was only able to lose about 10 pounds. I could never get past weighing 170. The doctor then informed me that Narcolepsy impairs the part of the brain that controls the metabolism. My weight issues were a result of a disorder I never knew I had.

I DON’T EVEN KNOW WHAT THIS MEANS

Symptoms of Narcolepsy include

  • Cataplexy: A temporary muscle failure triggered by an emotion. Some Narcoleptics laugh and fall flat to the floor. Some laugh and get lock-jaw. There is nothing you can do in the middle of an episode but wait for it to be over. (luckily I’ve only had really mild experiences with this one).
  • Hypnogogic Hallucinations: Vivid audio and visual events that occur as a Narcoleptic is falling asleep or during sleep. These are realistic dreams. These include dreams of floating, out-of-body experiences, and in my opinion prophetic dreams. I have been experiencing this one since I was about 15 or 16. Some of my dreams have even come true. I thought I was crazy up until 2004 when a dream of mine came true and it freaked me out so bad that I started taking note of my dreams.
  • Sleep Paralysis: While you are sleeping your brain releases a hormone to give your body a certain level of paralysis so that you won’t act out the thoughts in your dreams. Well sometimes my brain wakes up before my body does. This is most commonly known as “the monkey on your back” or “the devil holding you down.” It’s when you wake up but you can’t move. Lots of people give this some spiritual meaning. It is a very scary moment where you try to scream and nothing comes out. You try to move and you can’t. I experience this one frequently as well. I have learned to keep myself calm and just lie still until it passes.

NOW WHAT?

Medication of course! The medications I have been taking for the last 5 years is Provigil/Nugivil and Zyrem. Nuvigil is for keeping me awake and Zyrem is for putting me to restful sleep without dreams. Nuvigil is equivalent to 8 cups of coffee, helps with metabolism and cateplexy. Zyrem is the “date rape” drug. It is so serious that I have to dilute it and drink it while sitting in bed. I have rarely take this one because it requires me to wake up 3 hours after falling asleep to take a second dose. HOWEVER, now that I am not working full-time and I don’t have insurance I am unable to obtain my medication. I now suffer from the symptoms all over again. Medication has caused me to forget how difficult life was before taking it. Now that I don’t have it I find it hard to help people understand how I am feeling. Because Narcolepsy is invisible everybody urges you to do what they thing will help such as sleep more, get over it, or force yourself to exercise. Honestly, I would love to do all of that, but the fact of the matter is I AM SLEEPY and EXHAUSTED because I AM NARCOLEPTIC.

A PROMISE

I made a promise to myself that I will do what I can to expose this disorder so that more people will get tested and fewer people will pick on Narcoleptics. There’s nothing funny about it. I have just recently joined the Narcolepsy Network and I am reaching out to them to create a partnership so that %5 of the proceeds from my upcoming book “30 Revelations @ 30” will be donated to exposing Narcolepsy.

Thank you for reading! If you find yourself excessively sleepy GET TESTED! To follow this blog click the “Follow this blog” button on the right side of your screen.

Pura Vida,
Shelly Bell

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