Invasion of a Sleep Disorder
The Early Years…
My Narcolepsy crept up silently and without much warning when I was in my early thirties. I have no memory of any symptoms during my childhood, teens, or even my twenties. I was always on the go and didn’t let any grass grow under my feet. In 1991, I was a single parent working third shift at a ductile iron foundry. It was hard work, but I was making good money and things were looking up…until 1993 when I developed asthma as a result of chemical exposure.
Little did I know then how quickly and drastically my life was changing! I was off work for 17 weeks due to the asthma, I lost my father during the time I was off, and then the foundry didn’t want to put me back to work. Workman’s Compensation sent me for an Independent Medical Exam with a Sleep and Respiratory doctor about an hour away. Looking back now, I am grateful that they did because he and his staff have been so very helpful and supportive through the years.
I had to change jobs several times before they truly got me away from the isocynates that had caused my asthma, and I finally ended up working 2nd shift in the stockroom. It was then, early 1995, that I started noticing some weird things happening. When I tried to take a drink of coffee or soda, my arm would get part way to my mouth and I felt like it just stopped.
I didn’t drop my drink, but then as suddenly as it happened, I’d be able to move my arm again. I knew that I was really tired! The previous couple years had been extremely stressful, my son was in his teens and going through some growing problems as well, I still missed my dad terribly, and there was some resentment from some of the people I worked with over the job I had. Stressed? Well beyond anything I ever thought possible! I also started having a lot of headaches and I noticed that my knees would buckle when I was walking. I thought perhaps I had a pinched nerve and I decided to go to a Chiropractor.
We talked about the things that were happening, and after several visits I felt like it was getting better. I was still really tired, but there were times I was working 21 days without a day off, so what did I expect! When I started dozing off at work I decided that I needed to see my physician. She wanted to do an overnight oxygen saturation test, and then we’d go from there, but that she thought I would probably have to have a sleep study done after that. I truly thought she’d lost her mind, but since she had diagnosed my asthma immediately, I knew I had to give her the benefit of the doubt.
So, I went home with the little box so I could sleep with the ‘clippy’ on my finger that night. Several days later I went back to see the doctor, and she said she was sending me to a Sleep and Respiratory doctor. Ironically, it was the same doctor that I had seen for my lungs.
In May 1995, I had my overnight sleep study and MSLT (Multiple Sleep Latency Test) done. They didn’t even do the last daytime nap. I had been ‘chastised’ for falling asleep between naps, and then I still couldn’t stay awake long enough for the tech to check all the settings when I was supposed to take a nap. That room got dark and it was lights out for me, too!
That afternoon the tech told me that I had the ‘coolest’ sleep study she’d seen in awhile. The doctor on call from the office told me it was “textbook” Narcolepsy, wrote me a prescription for Ritalin, asked if I had any questions, and sent me home with a future appointment to see my regular sleep doctor.
Questions? I’m not even sure I could have told anyone my name at that point! I sat on the grass outside the hospital awaiting my ride and I cried. I’m not sure when I truly stopped, or if I ever totally stopped. I didn’t want this thing called Narcolepsy!
Coping with the reality…
Well, want it or not, it was to be part of my life. I started learning more about this “thing” they told me I had, and as I learned more, things started having names. I understood the Excessive Daytime Sleepiness, but that was all I really knew about Narcolepsy.
The times my arms wouldn’t work and my knees would buckle weren’t a pinched nerve–it was called Cataplexy.
Right before my asthma was diagnosed and I was still running a core machine on third shift, there were times that I didn’t know how all those cores got there because I had no recollection of making them–it was called Automatic Behavior.
The nights that I was certain I had heard someone walk in my bedroom, but I was big chicken and couldn’t force myself to move to turn around and look, hadn’t been because I’m a big chicken–it was called Hypnogogic Hallucinations and Sleep Paralysis.
All those nights that I laid awake, fighting to go back to sleep weren’t stress related–it was called Disturbed Nighttime Sleep.
My vocabulary was suddenly expanding, but it wasn’t a welcome learning experience! I wanted to just wake up and find out this was a bad dream. My family did their best to understand, but if I was living it and didn’t understand it, how could they?
I couldn’t tell people I had Narcolepsy at first. I felt somehow that I was an inferior person because of it. I told my foreman at work and one of the guys I worked with on second shift strictly out of necessity. During the next four years, that co-worker was a source of great help and support, for which I will always be grateful.
When he would see me start doing the “head bob” at my desk, he would walk back and simply put his hand on my shoulder as he went by. This was enough to make me realize what was happening and that it was time to get up and move around.
The not-so-good stuff…
I learned how to better deal emotionally with the Narcolepsy in the years that followed, but my symptoms just seemed to get worse, I went through numerous medication changes, and then I developed severe migraines as well.
The combination was making things very difficult at work, so I knew that I had no choice but to tell the personnel manager because it was the only way I would have any protection under the ADA. There were mornings that I simply couldn’t get out of bed. My foreman allowed me to work a flexible schedule until another co-worker complained to the personnel manager.
From that point on, things went downhill. In July 1999 I lost my job. I filed a complaint with the Equal Employment Opportunity Commission due to the fact that my employer never offered any type of accommodation, but my complaint was dismissed.
In October 2000 I filed for Social Security Disability. My first application was denied, so I filed an appeal. On February 6, 2002 I had a hearing before an Administrative Law Judge and he ruled in my favor. I received my “Fully Favorable” letter March 14, 2002.
The good stuff…
I am very fortunate to have a wonderful, loving, supportive man in my life. He’s hung in there with me through all of this, even when I tried to force him out of my life.
He works hard to keep me from becoming a hermit, I’m not very happy about being pushed to get out. Once he gets me out the door it’s ok, but until then it’s a battle. My Narcolepsy scared me much more than it did him, and he was and is willing to do whatever he can to make my life better, and I love him dearly for it.
I cope better with the realities of Narcolepsy than I did in the beginning, but I still have my days that I’m angry and depressed because of this unwelcome invasion of my life. I resent all the baseball games and school programs I missed for my son because of this sleep disorder.
As he got a little older, there were times he took advantage of my Narcolepsy, too! But, he grew up in spite of my Narcolepsy and me, to become a young man I am very, very proud of. My mother has done more than her share to get me through the really rough days; she is one of a kind!
Most of the time I get through the rough stuff with the support of family and friends, some of whom I would never have met if not for this disorder. I rely on a large dose of humor. The staff and visitors at Talk About Sleep have been a very welcome addition to my life. I have found so much support from others that know just what I’m experiencing. Narcolepsy is different for everyone, but there are some things we all deal with and I’ve found people here that can finish my sentences for me because they’ve been there, too. Sometimes the worst things in your life can bring you some of the best things in your life!
If you would like to share your unique sleep story, please contact us at: PatientStories@talkaboutsleep.com
Or submit your story in a Microsoft Word or Text format to: PatientStories@talkaboutsleep.com