A Narcoleptic's Tale
Last updated: September 2023
I have type 2 Narcolepsy. Though I don't have all of the symptoms of N1, the sleepiness as well as the recurring fatigue, are the same. It seems to me that the medical community actually may know less about N2, than N1. Narcolepsy usually does not present itself until the teen years, or early 20's. I had sleep issues even when I was small. I would wake up in the yard, on the swing set, and other odd places. I was famous, or should I say infamous, with my family and relatives for walking in my sleep. occasionally, I will still get up and cruise around in my sleep. Too bad I can't jog a couple of miles while sleeping.
Sleepy from a young age
I was around 4 or so I would guess, before I realized my brother and 3 sisters were not sleepy like I was. They did not fall asleep watching television, and rarely took naps. I was small though, and did not think about the impact. One day when I was 4, my mother told me I was going to go to school next year. My first question for her was "do they take naps at school?". She said yes, and I was somewhat relieved (what she DIDN'T tell me that only kindergarten took naps). I did tell her I did not want to go. She said they had books at school I could read. Books and naps sounded good, but I still did not want to go. I was too young to flee the country, so they were going to make me serve the entire sentence. I kept seeing Alcatraz in my mind. My objection was noted, and when school started, off I went.
I had taught myself to read when I was 4. I was driven by an obsession to be able to decipher and understand those markings I saw on paper and all kinds of other places. My mother was probably glad I was going to school. I would not be there to ask her questions like "How come some of these letter make the same sound that others do?", "Why are there letters that make no sound?", "Don't you think it's silly to put letters in a word that don't do anything?". You get the idea. My mom was a very patient lady. I get to school and I HATE it. These people didn't really know what a decent nap is. This 15 minute thing is worthless. A good nap for me is 2 to 3 hours. I didn't see any books either. At some point I asked, and was told that reading classes did not start until second grade. I'm thinking that they should let me come back in two years. This school thing is a boring waste of time. Why would anybody actually LIKE this ? I don't thing I can do 12 more years of school. At age 4, that's 3 lifetimes for me. I'm thinking I could die of old age before I can finish 12th grade, and that thought led to what was almost a phobia that came close to being a blood oath for me: No matter what, I can't repeat a grade. Another year tacked on could mean the end of me, not to mention those kids would all be convinced I had to repeat a grade because I was an idiot.
Tired at school
I am tired at school, but I don't say anything about it, and I don't participate much. They may find something wrong with me, and make me repeat a grade. So, in second grade, they divide the class into groups of 3. It's quickly apparent to me, that the teacher had divided the class based on her perception of her students intellectual ability. I'm in the lowest ability group. They hand out our books, I open it up thinking maybe I won't be so bored all the time. I open it up and see things " See Spot run", "Look at the flowers', "Jane has the ball". I was quite disappointed. My mother had to meet with the teacher. She told me "your teacher says you will not read at school. I told her "all they have at school, is baby books. I don't read baby book." She said "ok". Before long, we took a statewide reading and comprehension test. My score was #2 in the state for second grade, and the person that was #1, was a year older than I was because their parents held them out of school because their birthday was in late summer( so is mine ). #2 in the state in my grade, and #1 for my age, allowed me to move to the high ability group. We took standardized tests in grade school. I would usually score 97 or 98. This is the guy who would not participate, and did not apply himself.
Finding an interest in wrestling
As I grew older, I was interested in amateur wrestling. I had a lot of ability. My brother was 4 years older that I, but I could hold my own scrapping with him. There were some people that were excited about my wrestling. We lived in Iowa, and it is huge there. By age 12 or so, I could no longer make the weight. I did not know it at the time, but my resting metabolism had slowed to the point where it affected the amount of calories I could burn. I quit wrestling Nobody said anything, but I picked up on lots of clues. I wouldn't participate or apply myself, and I rounded it all out with adding quitter to the list. My father had been excited about my test scores and my wrestling. By this time, I don't guess he was too wild about me being a lazy quitter. We never got along after that, and it was that way until he died.
My excessive sleepiness was not normal
After high school, I didn't really know what I wanted to do, so I went to college, where I decided that my excess sleepiness was not normal. I tried going to bed earlier and other things. Of course, nothing helped. All I did after a while, was just read the text books and forfeited the lecture information. The childhood exuberance that had offset the sleepiness was no longer there. I was becoming more tired over time. I did some research, and decided that I likely had Narcolepsy, but I'm not a doctor, and could never be one anyway at that point. I don't think they let them have naps. Regardless, Whatever it may be, it was certainly a major sleep issue of some kind. I realized something while I was doing research. There were a handful of times when I was a kid, that I woke up in the morning feeling like a super hero: happy, glad to be alive, eager to do something that day. Whenever I woke up feeling that way, I would silently wish for more of those. I realized then, at age 19 or so, that those handful of days, were the only times I had gone through a complete sleep cycle. Sometimes I wish I had not experienced those. Ignorance IS bliss sometimes...
Once I was sure that I had a major sleep issue, I decided that I would just wing it, and just tough it out, since the possibilities of what it was, were all incurable. I would have to just let go of many of the hopes and dreams I had. I was also concerned about further restrictions possibly arising in the future. If I got a diagnosis, what if they turned around and took my driver's license away ? What other opportunities other than the obvious ones would evaporate? I also knew that I would likely end up working for people that had less potential than I did, because my gpa was a good deal lower than it would have been otherwise. That proved to be true.
Narcolepsy, insomnia, and finding a specialist
I worked for UPS and Fedex when I was young. The job was very well suited for me as I was a Hub Supervisor and later a Sort Manager. It was fast paced, and I was on my feet 95% of the time. UPS had a requirement that you had to drive one of those brown delivery vans to move into management. I was pretty sure I couldn't commute and work a job that has 10 - 12 hour days, so I left there. After I left there I went to Fedex, and from there, I went to AT&T as an IT analyst. Working there was brutal, because I had to sit at a desk all day. Half my day was spent just fighting to stay awake. I was there 15 years. When I was about 60, I went through a period of pretty severe insomnia. After not sleeping for about 4 days and lots of lost sleep before that, I had what they call a "mini-stroke". The lack sleep eventually caused my blood pressure to spike. Willpower didn't have as much power now, and I went to a Narcolepsy Specialist. I had a sleep test. I have meds now. They are not a regular thing for me though for a couple of reasons. You build a tolerance to Amphetamines over time, and to me, it's a masking agent of sorts so when you feel the worst, and take them, that is when they are the hardest on the human body. For most of my life, I have started my day by forcing myself to get out of bed, and then spent the day forcing myself to do things I felt like I was too tired to accomplish, like I was dragging an anchor uphill behind me all day.
Only a few people know I have Narcolepsy. The reason is, that I wanted to live as normal as I could manage to be. I have N2, which because of the lack of symptoms compared to N!, I felt I had a better chance to tough it out. Also, things don't affect you as much overall, if you don't dwell on them any more than you have to. I have Spinal Stenosis from working at UPS, Fuch's Dystrophy causing me to slowly go blind and will require human donor transplants, and Narcolepsy (I sound like my grandmother when I was a kid). I didn't think I would live this long, so I feel like I'm playing with house money so to speak. I have heard the phrase many times "you can sleep when you're dead". I can? Awesome!
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