I thought I was crazy, you laugh at me for saying that, but man did I ever think I was loosing my mind. I think part of the reason as to why I did not say anything about my issues at the time was because of my fear of just being mentally ill or diagnosed with “way to messed up to even try to fix’ . I would literally wake up ... or come back to reality wondering where I had been, when I had wondered off into my dream mode. I was just surviving and just getting by; it would be safe to say I was a totally different person. I just merely existed, I was certainly not living.
You wonder if people noticed if I was acting strange; I would say yes most definitely! I remember friends replying to my texts saying uh what are you talking about? I would literally sleep text! I would fall asleep and have realistic dreams and upon awakening I would think they happened... believe me with the looks I got from people I know they didn’t happen. My Mom noticed a change, she figured it was due to more homework, more stress, high school, soccer.. anything but narcolepsy.
I give credit to my one team mate I use to carpool with for giving me a huge eye opener. The one day that changed my opinion of me possibly being insane. We were sitting in traffic on the way to practice, my mom was driving. Doing as us teenagers normally did we were gossiping and talking about silly things; next thing you know she said “oh my god, I am so tired! I didn’t sleep the whole night through last night”. I must have looked puzzled; I must have looked like a retard living in a bubble. Even better I probably sounded like a retard asking “do you always sleep the whole night through?”. With a reply like “yeah I occasionally wake up the odd night why?” I knew I had an issue.
Next thing you know at practice I was asking everyone the same question; I couldn’t believe I had been so oblivious and just thought it was a norm to wake up 2-12 times a night. Its been going on so long, I never really thought much of it! No wonder waiting for Santa clause and the Tooth Fairy and the Easter bunny felt like a million years, I would have trouble getting to bed from excitement... more than once each night!
From then on I knew I had a problem, I knew it was with sleeping, I just now needed a proper diagnosis! I did not get a sleep study done until June of 09 and that has been a turning point in my life. I was devastated when he told me I had narcolepsy; I was overwhelmed with the endless issues I would be faced with and I was relieved that the mystery was over. I had a mixture of emotions, I honestly did not know how to feel other than frustrated. On the plus side, my parents and team mates could stop calling me lazy, could stop nagging me for not doing something and I could find relief in knowing I was not crazy.
A lot has changed since my diagnosis, I feel as though I have knowingly had narcolepsy for years but the facts state it's only been 2 years since my diagnosis. I switched schools, to a self directed school. The school honestly changed me in so many ways. It forced me out of my comfort zone, it forced me to leave everything I knew, everything/everyone I grew up with. I did not know a single person in the school, it was all a new experience. I switched have way through my grade ten year, which made things even more difficult! Cliques were built and at this High School there is no such thing as 'class', it's like online learning or self paced learning in a school type environment. Meeting people seemed impossible, it made my decision to switch schools feel like a massive regret.
Luckily after a few awkward encounters in the hallways, I was invited to lunch by three wonderful ladies. I did not know it then but they have turned out to be the most understanding and accepting friends I have to this day. When I had first met them was when I was in the stage of knowing I had an issue; a sleep issue. I did not share this with them, but if you ask them about those months when they first met me they would say their was a few awkward or funny moments. I once had a nap in the backseat of my friends car, I woke up to realize I was sleep talking about the dream I was having. I always fell asleep at my desk and I also managed to send them a few creative 'sleep texts'. We laugh about it now, but boy do I remember feeling that embarrassment.
Once I was diagnosed I told my new friends about my disorder, to them it all made sense. They had seen me at my worst, and this Narcolepsy explained my weird behavior. As for the friends I had from Jr. High and my 'old' High school, well they were less understanding. They knew me at a time when I wasn't in survival mode, I had generally kept it together for the times at school when I saw them. Sure there was the odd off moment, but they never thought twice or analyzed my every motion. It was apparent that my Narcolepsy wasn't really a big deal. They brushed it off and overtime we drifted apart. They often complained about the lack of time I made or committed to visiting them. I'll be honest though, my priorities changed. The new friends I had were accepting me and making the best of a tough time, and the 'other' friends were blaming me for something I was desperately trying to understand myself. On paper it was not that tough of a decision to just move on.
I have to admit, that summer was awful. I had one too many silly arguments with my 'best friends'. I felt misunderstood and blamed for something I couldn't control. They felt neglected and forgotten about. I tried to fix things, I honestly gave it my best shot but we drifted apart. Their wasn't a big blow up or a huge fight; we just lost touch. I still say hi to them, I still chat them up every once and a while but I wouldn't be the first to call them up to go grab coffee or a movie. We were immature then and we were all in different parts of our lives. I don't regret switching schools, I don't regret loosing touch, I regret nothing of that year. It is a fact of life, and part of life that allowed me to see what it is I want from my peers and friends. If your friends or peers are trying to understand what your 'illness' or 'disorder' is like you should commend them. They will never understand, they will never get it, but they are trying. They are trying to see what it is like to be in your shoes, and that's all I will ever ask from my friends. A little effort in both directions goes a long ways, I just happened to learn that the hard way.
My friends these past two years have been phenomenal, they embrace my narcolepsy. If I am tired and am in need of a nap, they either let me have my 10-20 minutes or they join in! I love it and appreciate them for being so understanding. I met a few people along my path who have narcolepsy, some over Facebook and some in person. One common thing that I have found, is that they only tell their close family and friends. I can understand where they are coming from, and I understand that Narcolepsy can put a damper on a relationship or have people treat you differently. I use to be the same in not telling anyone. I realized though that the more blunt and honest I am about my Narcolepsy the easier it is to take care of my extra needs. Now when I go off for a nap they don't think I am weird or think I am getting special privileges for unknown reasoning.
I embrace my Narcolepsy, I joke about it more often than not. My close friends know it bothers me, but they also have seen Narcolepsy at it's finest, before all the medication. Often I use it as an icebreaker, I am over the fact that it should be hidden. If people thought I couldn't do something because I have Narcolepsy, I'd be sure to prove to them I can. Narcolepsy is a part of me, I just make sure that it never defines me. I am just as normal as any other kid out there, we've all got problems, it's how we deal with them that defines us.
I would say I am a totally different person now, all because of my narcolepsy. I matured quickly that’s for sure. It definitely was a huge wake up call as to how I need to better take care of my self and in turn be more responsible. My actions and decisions I sometimes make to do silly things like skip a nap, or stay up late... affect me for days to come. It’s a risk I take often; you only live once. But it is also a risk I have to learn to be responsible in deciding when I can be stupid and when I can neglect my sleep disorder.
To be honest some days I hate narcolepsy, I hate the things I have to do because I’m classified as some kind of special. It bothers me when someone knows I have narcolepsy and they 'wish' they had it. I hate being treated differently, and I hate when people ask me or suggest I use my narcolepsy as an excuse. Sure I could use it as an excuse, and some days I do, but my only wish is that people don’t treat me like I am some sort of wild case that should get special treatments that are unnecessary.
If narcolepsy were to ever get a cure, I am not totally sure I would jump on board right away, its shaped me as a person and allowed me to grow significantly as a person. As much as i hate it, i love it for giving me the wake up call i needed <-- no pun intended.. ;)
"the things I sometimes wish I never had are the things I wonder what or who I'd be without"