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The Curse of the Narcoleptic

by reddyleigh (no login)

I am soooo tired. These are the words that any working parent, and sometimes not working parent, says very frequently. The late nights we used to enjoy when we were young and before kids, gone away with the call of the bed and soft pillow that say come, lay down for a while, sleep. It's ever enticing appearance is very crafty and often calls you with just a hint of a small nap which will refresh you and allow the day to go on with unabounded energy (right). In reality, however, it is a cunning trick to get you to lay down and spend hours in it's delightful comfort, enveloped in its covers that become a pleasant weight underneath a cool fan, wiling the hours away while there are pressing chores that need to be completed before you should even be thinking of closing one eye much less two.


Maybe my description seems a little too love affairish for most people thus making me sound lazy and slothful, but that is the curse of a narcoleptic. The funny thing is that I feel the call from just sitting in a chair for a few moments, a bath, a pew in church, at work at the keyboard, and yes, (scary), a seat behind the wheel of a car, even standing at times.


I am a narcoleptic. They say admission is the first step. JK. No really, I am. I was diagnosed about 13 years ago while in nursing school. What I thought was just extreme exhaustion from raising four kids, working full time hours and going to nursing school, turned out to be a little understood disease called narcoloepsy which is when you fall asleep at all the wrong times and have constant nightmares and leg jerking while sleeping at the right times.


My poor husband has been awakened to many episodes of talking in my sleep, even hitting (him sometimes), and sometimes even ear piercing screams like one may hear on an episode of Halloween or Friday the 13th. I once even woke the kids up with a scream like that, it scared me too.


The leg jerking is just as bad. Though it comes and goes, you cannot imagine the frustration of just getting almost asleep and then having your legs come to life like a kung fu master or something. This happening not just once or twice as you ease into that ever so welcoming sleep, but over and over again.


But, those are private things I suffer with. Publicly, I have been humiliated so many times when I fall asleep at soccer games, in church during the sermon, standing at the bedside of a patient, holding a conversation with someone, etc. Just about any situation that you can think of I can fall asleep in.


Now don't get me wrong. I am not as bad as the girl in Deuce Bigalow. I have never flown down the middle of a bowling lane because I fell asleep bowling, or had to have my hair tied to the back of a booth so I could eat a bowl of soup and not drown in it when I fell asleep. I can't fall asleep in a second. I usually feel a "spell" coming on. First, I start to yawn, and yawn, and yawn, and yawn. My husband sometimes tells me "save some oxygen for the rest of us". Then, I get really restless because I know that in just a minute I will be asleep if I don't do something.


When I am at home I can just go take a nap, but at work it is a little more difficult. Recently, I answered a call and several minutes later my partner and good friend said, "Are you awake?" I startled awake, looked at the phone and said "hello?", but they had already hung up. She said she heard me get quiet all of the sudden and knew I had to be asleep. These episodes are usually harmless and short lived but they can be more dangerous when having to drive somewhere. Forget trying to pay attention for more than an hour, which is usually a struggle just to do that. It is a wonder how I got through nursing school but I think I am a pretty good nurse. Maybe I found a way to decipher those notes that mostly ended up looking like the scribble scrabble of a 2 year old. I guess there is something to say about hands on training as well.


My whole life has to be planned around this ridiculous disease. While most people can stay up late and then just make it through the next on a prayer and a cup of coffe, I can not. I can't go out of town without first taking a nap, and then I still have to take my medicine. I can tell when I am getting sleepy and will pull over if I have to but it is very dangerous to be on the side of the road in your car by yourself in an area that you may not be familiar with. Sometimes I even have to stop on the way to a destination that is only an hour away. How pitiful is that, that I cannot even make it to Montgomery sometimes?


Now, don't be scared. First of all, I rarely go out of town, and usually when I do I make someone else drive. Second, I do take my medicine so that decreases the attacks that I have, and third, I rarely have episodes when just driving around town - but sometimes I do.

I now have the added issue of cataplexy. It's not severe but nevertheless if I am laughing very hard or really mad - my legs want to give way! And, now mild sleep apnea on top of that! Probably which could be fixed with about 30 lbs of weight loss but I just can't find the energy half the time! CPAP doesn't seem to make a difference. The whole deal is raw!


I have recently been frustrated with things and felt like venting so I decided to write about it in my blog. That way, I can say what I want and take as long as I want, and I do love to talk, and if someone doesn't want to listen they don't have to read it and I'll never know the difference. It is a really good form of therapy. LOL


So, thanks for listening, I think I'll go take a nap now.




Posted on Aug 6, 2012, 11:26 PM

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