Today was a day full of beauty and narcolepsy.
Narcolepsy is defined as a condition characterized by an extreme tendency to fall asleep whenever in relaxing surroundings, and this is what I was diagnosed with in January of this year. The medication I am currently on has recently started making me twitch in uncontrollable and sometimes freakish ways, even going off the meds for a few days doesn't seem to help the matter. This serves as the precursor for the retelling of the sleepy roller coaster that was today.
The day starts with three alarms on my phone set to go off at ten minute intervals, I hit snooze on each of them for an hour until a phone call from my boyfriend wakes me up. If we ever hang out in the AM such phone calls are a must. In previous years I had three different kinds of alarms, one on my phone, one that played music, and another that had a helicopter on it that flew off when the alarm went off and I had to retrieve it and replace it to turn the alarm off. I would still hit snooze on all three for an hour, despite having to get up and stumble about the room. Once finally up and about the sleepiness could be set aside for a little while.
The day was beautiful and extremely warm for April so only three hours after waking up I took another nap. Because it was the Easter holiday I drove out to my aunt's house with my boyfriend, ever grateful for his presence for the hour long car ride since driving can be dangerous as a narcoleptic. The family get together was pleasant and included lots of food and lots of small talk. As it was a warm day my man and I sat outside in the sun to enjoy it, this of course led to many comments from me about wishing there were a hammock or a blanket to sleep on. "Napping in the sun is my favorite activity," words that came out of my mouth quite a few times.
As the afternoon continued we walked around the small town and enjoyed the site seeing, but the beauty became increasingly more difficult to enjoy as my sleepiness overtook me. Despite having slept for 9 hours the night before I was exhausted, I was walking but could barely keep my eyes open. I would get jogged out of this state temporarily to take a picture of a beautiful church but as soon as the excitement passed the drowsiness took its place. One of the aspects of narcolepsy is that your brain is constantly ready to go into Rapid Eye Movement (REM) sleep. At this point I could literally feel my eyes rolling back into my head as if preparing for REM, yet at the same time I walked along a gorgeous boulevard with victorian houses and churches with stained glass windows. It was only through caffeine and intelligent conversation that I could be snapped out of this lethargy.
Later on that evening I fell asleep while watching one of my favorite TV shows, Cosmos. After a little while I found myself in a state of half sleep in which I was vaguely aware of the world around me but not fully conscious. In most people this state doesn't last very long and will go away slowly as they wake up from sleeping, but for me this state was sharply taken away from me because of what happened next. I snapped to attention when I heard frightening thumps down the stairs, sounding like a person falling from the top all the way down. Thinking it was my 10 year old little sister I jumped up right away in concern, thankfully it was just her laundry hamper. But this jump to alertness from drowsiness made me realize the extreme change in consciousness that I had experienced. I realized how much I missed in that state of half sleep and how often as a narcoleptic I will go into that state and may miss so much around me.
While medication can be very helpful in alertness and focus, it can have its downsides as well, the twitches I mentioned earlier. Yes these side effects are annoying and inconvenient but I am coming to understand the extreme importance of alertness and assertiveness in life, as a narcoleptic it is my responsibility to keep myself alert. I need to do whatever I can to keep myself awake, alert, and on track. It's my life to live and I want to keep on enjoying it at 100% capacity.
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