Before you can move forward, you gotta remember where you’ve been

With two days to go until the Virtual Run/Walk for Narcolepsy, it occurred to me that I’ve neglected to share MY story….

I’ve been a sleepy person as long as I can remember. My parents were divorced and lived three hours apart, meaning we had to make weekend trips once a month to go visit my mother. Even in my step-mom’s tiny little hatchback, wedged between my sister and step-sister, I managed to sleep almost the whole trip – every trip.

It wasn’t just the car that made me sleepy.  In seventh grade, I fell asleep for the first time in class that I can recall. We were sitting in a dark room, watching a history documentary, which is a recipe for perfect napping conditions in my opinion. The teacher was so offended and could not believe that someone would actually fall asleep in her class. I felt embarrassed as the other students in the class laughed, but I truly had no control over the urge to sleep.

Throughout my high school years, I kept busy with debate, band, and working in a retail store. I paid my little sister to do my portion of the chores on several occasions so that I could nap after school before going to work. (Thank you, Sis!)  I completed assignments as quickly as possible so that I could put my head down. I thought I was sleepy all the time because I was “burning the candle at both ends” as my dad called it. At one point, my parents even took me to the doctor because I was sleeping a lot and was socially withdrawing from others. The doctor called this “teenage depression” and prescribed anti-depressants. I took them for about a month before I began throwing them away. I knew that I was depressed because I was tired, not tired because I was depressed!

In my early-20’s,I began a career in Information Technology. Working in a fast-paced field that demanded a sharp, attentive mind was both rejuvenating and exhausting. I frequently fell asleep after work and slept until the next morning, not even waking up to eat dinner. At age 25, I had a baby girl.

Beautiful motivation to stay awake

In the years following my daughter’s birth, I noticed my sleepiness much more. Having a child reduces the chances to nap spontaneously. When my daughter was a tiny baby, it was easier; we just napped together on the couch.

But as she got older, things started to change and I couldn’t nap as often since she didn’t nap as often.  In typical fashion, I came up with other excuses for why I was so tired. The baby kept me up. I worked too many hours. My husband was snoring. But when the baby started sleeping through the night and my husband was diagnosed with and treated for sleep apnea, I found that my excuses were gone and that I was faced with confronting my sleepiness. My primary doctor did some blood work and prescribed Ambien, thinking I probably had insomnia caused by stress.

There comes a point in a person’s life when they realize the gravity of a situation.  Mine occurred one day in the middle of The Home Depot.  My beautiful little girl was almost three at the time.   She was running around, twirling and singing…doing normal almost-three-year-old things. I was so tired and moody that I just wanted her to stand by me quietly, and I told her so – loudly. She started crying, and I felt like the worst mother in the world for snapping at her.  At that moment, I knew I was dealing with something a little more complicated than stress-induced insomnia. I sent my doctor a message, and she referred me to a sleep specialist.

Visiting the sleep specialist was a strange experience. I’d never even heard of a sleep specialist and wasn’t sure what to expect. To be honest, I was sure he was some sort of quack who was going to do acupuncture and aromatherapy or put me on a couch and ask me about my dreams. I filled out a long questionnaire and did the Epworth Sleepiness test, scoring a 16 (anything above a 9 means you should see a doctor). The sleep specialist said that I had some physical features commonly found in sleep apnea patients – small jaw, narrow sinuses, high pallet – but that he did not think that was my problem. At that moment, he started asking me weird questions. “Do your legs ever get weak when you laugh or get angry?” I thought everyone experienced that! He continued to ask questions about vivid dreams and if I ever feel like I couldn’t move when falling asleep or waking up. I never knew the sleep paralysis I’d been living with for years and years was a symptom of a sleep disorder! He told me that he was going to schedule an overnight sleep study as well as the multiple sleep latency test (MSLT) to look for signs of narcolepsy.

That day, I went back to work and looked up narcolepsy. When I read the symptoms, I was shocked and terrified. After all, I did not want to be diagnosed with a lifelong condition with no cure. I spent the next three weeks biting my nails and driving my husband crazy with the “what-ifs”.

The night of my sleep study was also my 28th birthday. Unfortunately, I did not get the required amount of sleep that night to continue with the MSLT and was sent home with no answers and even more frustration. Two weeks later, I finally made it through the overnight with enough sleep to continue with the MSLT. I was still worried that the results wouldn’t be of any help because I felt like I wasn’t sleeping the same as I would at home. I had spent so much of my life fighting to stay awake unless I was home that I wasn’t sure I could sleep there. Much to my surprise, I fell asleep during most of the naps without even realizing it!

On September 12th, 2011, I received my diagnosis of narcolepsy. I felt a mixture of relief and anxiety – relief to finally have a name for what was happening but anxiety because it wasn’t something that could be fixed. I started a medication schedule that included stimulants throughout the day and a sleep aid at night. I increased the amount of exercise I did, particularly running because it made me feel awake. Changing some old habits like sleeping in on the weekends and reaching for caffeine has been difficult, but getting in a routine has been crucial in managing my symptoms. I don’t think I am at a perfect place yet, but I am much better than I was prior to diagnosis.

Just days after I was diagnosed, I signed up for my first official 5K race.  I don’t know if I’ll always be able to run or if narcolepsy and/or cataplexy will eventually prevent me from participating, so I figured I’d better enjoy it as long as possible.  Crossing the finish line of that race was one of the proudest moments of my life, coming in just behind marrying my husband and surviving childbirth.  I felt like as long as I kept on trying, I could learn to live with narcolepsy and still lead a productive life.

Living with narcolepsy is analogous to running in many ways.  Every day, I wage war against the clock, fighting to make every second count.  Just like some races are better than others and may even come with a PR, some days with narcolepsy are better than others.  Narcolepsy is my everyday race.  At night, when I finally get to put my head on the pillow, I feel like I’m crossing a finish line.

 

Comments

  1. John says:

    Great pictures :)

  2. Gina Dennis says:

    Every time I read a fellow Narcoleptic’s story (EVERY time) I feel not only like I’m not alone in this crazy mess of a disease but I’m also transported back to my days of pre and post diagnosis. Eerie how your school memories are almost exactly in line with mine (my son’s and mom’s too….yes, they are also Narcos).

    My mom was the first in our family to get diagnosed with a sleep disorder, sleep apnea. Then later diagnosed with Narcolepsy. I knew what sleep apnea was but up to that point I thought Narcolepsy was only falling asleep mid-conversation or something. I never realized that it was a disease that affected your nighttime sleeping or that it was also the reason for the excessive sleepiness that I’d felt since grade school.

    Mom and I are eerily similar medically (90% of the time our diagnoses match exactly), so when she told me of the sleep disorders, I did as I always do and went Google-ing. I sat stunned after reading the symptoms of Narcolepsy. These people sounded like they were talking about MY life! I spent the next week reading every patient story I could find. I found something in common with all of the stories but I still had my doubts that this could legitimately be the cause of so many things that I had always attributed to being dumb, lazy, unmotivated, etc.

    The neurologist scheduled a nighttime sleep study for me and said they would do a daytime study if warranted. I can clearly recall the feeling of defeat and despair when he said that I did not have sleep apnea and then rose to conclude our visit. That’s it? Do I not “warrant” a daytime study? I was crushed to learn that I really was just dumb, lazy, and unmotivated. The neurologist was in the hall walking away when everything in me just came unglued….I stood up and followed him down the hall and blurted out to him “Can ANYONE tell me why, no matter what I do, I’m so tired all the time!?!” He stopped, stunned. Then he says “Oh yeah…right….well maybe we should do a daytime sleep study too.” Ya think? Oiy. He “forgot” that he said he would approve one if it was warranted.

    My emotions were sky high and turbulent when I went for the daytime study. Even more so when I went to visit the neurologist to review the results. He said I had Idiopathic Hypersomnia and prescribed Provigil (The diagnosis was later changed to Narcolepsy and there’s a long story tied to the correction but I won’t go into it all here). Needless to say I was relieved to have a diagnosis that meant I was NOT dumb, lazy, or unmotivated. I will never forget the strength of emotion and grief that washed over me when I got into my car to go home that day. I sat for half an hour or so paralyzed in my car and weeping uncontrollably. I allowed all the self-hatred and doubt that I had felt all those years growing up pour out of me. Then I gathered all that trash up and bagged it….labeling that trash bag “Sleep Disorder” instead of labeling it “Me”.

    I drove home with a mission. I had to find out who “I” was and what parts of me weren’t “me” and was instead this disease.

    I did know this with a deadly certainty….I WAS NOT LAZY…I WAS NOT DUMB. And I was oh so ready to PROVE it.

    • Heather says:

      “I sat for half an hour or so paralyzed in my car and weeping uncontrollably. I allowed all the self-hatred and doubt that I had felt all those years growing up pour out of me. Then I gathered all that trash up and bagged it….labeling that trash bag “Sleep Disorder” instead of labeling it “Me”. ”

      Ohhh, that right there is good stuff. BTW, are you joining us tomorrow for the walk/run? 😀

  3. Makky's Mom says:

    Thanks for sharing your story Heather. I feel like my young adulthood was similar to yours… always tired, always falling asleep, no stamina, lots of sleep paralysis, vivid crazy dreams, difficultly staying asleep at night – awake every hour all night long… I always had/have an excuse for my fatigue – working, raising kids, stress, life in general, low iron levels, poor diet, heavy periods, low thyroid… I’m still awaiting the results of my overnight sleep study – hoping to get my results on Monday next week. I’ve been like this as long as I can remember – certainly since my very early 20’s so at least 25 years! I never thought I might have a medical reason for all this sleepiness but when my daughter got diagnosed with narcolepsy last year I started reading about it and thought “wow, this sounds like my problem too”. Even if I don’t officially get a narcolepsy diagnosis I still know there’s something “not right” about the way I sleep, and just knowing that gives me peace on the bad days.

    • Heather says:

      Isn’t it interesting and kind of comforting to read others’ stories and think, “Dang that is JUST like me?” I thought my vivid dreams were just an extension of my creativity and love of writing. I can’t tell you how many times I’ve been having a lucid dream about something and have thought, “Wow, that would make a killer story.” Sadly, I don’t remember most of the dreams once I wake up.

      I was talking to the Xyrem Success Program nurse a few weeks ago and told her that the weirdest thing had happened to me. For once in my life, I’d slept three hours without waking. She laughed and said, “You narcolepsy patients are so funny.” And here all this time I thought I was the norm! I didn’t realize that you really are supposed to sleep several hours in a row without waking up once. It just sounds so foreign to me!

      Please do let me know how the overnight results go. You have my e-mail address!

      • Makky's Mom says:

        Yes! I thought EVERYONE was awake every hour all night long, every single night… till last year when we started researching all this narcolepsy stuff… then I asked some people about it and they looked at me like I was weird. I talked to my doctor about my disrupted sleep and she suggested a sleeping pill (imovane) which I took for several nights. It was a very unsettling feeling to not even be aware of falling asleep or the passage of time all night. I literally laid down and it felt like no time passed and then it was morning and I was opening my eyes! Hubby tells me that’s how his sleep feels every night! Unfortunately, getting that kind of “dead sleep” didn’t seem to help my daytime sleepiness at all so after two weeks I stopped the imovane.

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