The Adventures of Narcolepsy Man

More on Narcolepsy

"Narcolepsy...A Funny Disorder That's No Laughing Matter."
Current mood: sleepy

It's one of the few books written about Narcolepsy, and it's by a woman who has N herself. Here are some excerpts from the book (it's very short but completely wonderful. By Margarette Utely)


"When I say narcolepsy is a funny disorder, I don't mean that it is humorous. I mean it is a strange, odd, weird disorder. But to deny that its symptoms can sometimes result in hysterically laughable situations is akin to an ostrich sticking its head in the sand to keep from being seen. Since that trick obviously does not work, people with narcolepsy usually try to find more subtle ways to avoid the public eye.

Excessive Daytime Sleepiness:
Lack of mental alertness, short attention span and poor concentration are characteristics of a sleepy mind. The mind longs to submit to sleep but begrudgingly labors to continue functioning. Efficiency, including accuracy and speed, is lost in the compromise. Learning and retention are affected. A person who continues to function in this condition is vulnerable to making mistakes and causing accidents. But poor performance has nothing to do with innate intellectual ability, personal responsibility, ambition, interest or motivation.
It has to do with narcolepsy.
Most people who suffer from excessive daytime sleepiness are probably riddled with guilt. They feel guilt from within and guilt from without. They feel guilty if they can't stay awake and often they are made to feel even more guilty when they nap.

Management of Symptoms :
Therapeutic Naps: Sleep specialists are now recommending that people with narcolepsy schedule naps just prior to their sleepy time(s) of day. Therapeutic napping should be as acceptable for narcoleptics as insulin is for diabetics.
Counseling: Narcolepsy is a physical, neurological disorder. It is not a mental illness. However, its symptoms sometimes produce psychological and emotional problems that require counseling. Psychosocial Support :Nothing has a more profound effect on a person with narcolepsy than the support provided by significant others such as family, close friends and co-workers. Whether this effect is positive or negative depends upon the understanding, acceptance and cooperation of these people.
Coping:
Narcolepsy is incurable. However, it is not hopeless. Drug treatment is helpful to a degree, but overall it can be rated as only moderately effective. Therefore, we narcoleptics must learn to live as best we can with this monster that threatens to gobble up our most productive waking hours. In large part, our success or failure depends on us. Coping skills for us equate to survival tactics under wartime conditions! Considering this fact, we must prepare ourselves with the best weapons at our disposal --- starting with knowledge.

Persons with narcolepsy often feel relentlessly sleepy, regardless of how much sleep they have had. Sleep may overwhelm them at inappropriate times, while they are in a conversation or driving, for example. "Whenever I get in the car as a passenger," Utley relates, "the first place I usually go is to sleep."
Persons with narcolepsy also experience bouts of sudden loss of muscle control, known as cataplexy. These usually strike during the expression of strong emotions, such as laughter, anger, or surprise. A joke might cause someone with narcolepsy to topple over. Her husband, Utley said, had to get used to "playing catcher.

Those with narcolepsy also may experience bizarre hallucinations in waking hours and a temporary muscle paralysis just as they are falling asleep or waking up. All of these symptoms represent the intrusion of the REM state of sleep into waking hours. Sleep specialists describe the problem as one of faulty control of sleep and wakefulness in which events normally restricted to sleep occur when the person is awake.

The disorder, she points out, can limit education, causing those with narcolepsy to miss important information and teachers to view them as lazy or stupid. Sleeping on the job is a sure path to failure. Trying to protect oneself from cataplexy by blocking emotions hampers personal relationships."

More stuff that's not from the book:

"Narcolepsy is a debilitating disorder that causes uncontrollable sleepiness and muscle weakness. The disorder can interfere with a person's ability to work. If you are a student, who suffers from Narcolepsy, you may experience lack of mental alertness and poor performance in school. This is the same with those who are working. Their personal interaction is affected by this condition. In cases where narcolepsy is left untreated, worse symptoms can be experienced and are characterized by microsleep and total paralysis. From a simple case of paralysis experienced only by a certain part of our body to the worst cases of untreated narcolepsy, a total muscular collapse and paralysis may be experienced depending on the patient."


AGH!!! I JUST FOUND THIS! NARCOLEPTIC FRIENDS- CHECK THIS OUT!!!!

The most recent news is extremely hopeful for Narcolepsy patients. Researchers under the leadership of a professor of molecular genetics, Dr. Masashi Yanagisawa at UT Southwestern Medical Center at Dallas, are now claiming to have discovered a new method of treatment for narcolepsy. Just like in movies where mice are used for experiments, the team used some genetically engineered mice with lacking nerve cells in the brain. These nerve cells are responsible for producing the brain chemical Orexin. The method involved introducing this brain chemical to the mice both genetically and by manual injection. It was concluded that without Orexin, the mice exhibited narcoleptic like symptoms including the overpowering sleepiness and cataplexy symptom. With injection of Orexin, the mice returned to full wakefulness. Researchers believe that a lack of the brain chemical Orexin may be the root cause of narcolepsy in humans as well. There is hope on the horizon! With further research it is widely anticipated that a more complete cure for this disorder will soon appear. However, more research and testing will still be necessary before Orexin can be made available to the public.

How they test for Narcolepsy:

Polysomnography shows one or more of the following:

* The onset of sleep is less than 10 minutes
* The onset of REM sleep is less than 20 minutes and
* A Multiple Sleep Latency Test (MSLT) that demonstrates an average sleep onset of less than 5 minutes
* HLA typing demonstrates DR2 positivity (Blood contains markers for narcolepsy)

My words.

Narcolepsy.
(A Poem and a Descriptive Essay lol)
Explained by ME

“When it hits me

like a seizure,

or like a calm intention of draining the life out of me...

I just want the control back.

I do know what’s becoming of me-

No, I’m not afraid of it, but I’m afraid of her.

I know my eyes have entirely changed form,

and so much of me has turned numb.

I feel nothing, but I feel so heavy.

When I catch a glimpse of my reflection,

it’s terra incognita, and I can’t look at it anymore.

I just want to sink into the ground,

so no one can see me.

Everything can seem OK

if I can just close my eyes, lean back,

and rest this bobble-head of mine.

But I’m not alone,

I can’t just sleep on an empty store shelf here in Wal-Mart.

It’s easier to just stay at home.

Change out of pajamas, into new pajamas.

Day after Day.

I know I’m not supposed to hide like this,

but there’s no fight when I’ll never be more than

this exhausted lump of chaos.

...How good it feels to just accomplish something,

I made it through an appointment, I fixed supper...

I wish I could hold on to that,

but it’s lost in the humming.



I think about the things people do in an ordinary day. Then I try to imagine myself this way, and there is literally a block. I am in reverence at everything people do, and mostly on 8 hours of sleep or less Sometimes I think, “what if I was in a situation where I needed to take charge, I was running from a murderer”, and that it would be impossible for me to say “TIME OUT” and go to sleep. I wouldn’t last long out there, I could never be a hero or even a survivor.
Just the thought of facing a normal day that people my age have- I feel like crying. It’s not because I feel bad for myself; strictly because I know I couldn’t do it and I would fall apart, and that scares me. I think about this a lot. And I’m angry. But I won’t fight against it. I’m too scared. I cannot handle my Narcolepsy when I’m in public. It’s awful. The panic attacks I have, and I know I look retarded when my face scrunches tight and my head nods. And no one would think I have Narcolepsy; that my thought process is completely fine. It’s just like if it were me on the outside, they’d think I was a burnout, or retarded in some way. My body slows right down, but things inside me are freaking out. “How do I hide this?” “Where can I sit, where can I doze off??” “What if I start crying?” You’d think the panic attacks are what’s worst, but then comes my displacement feeling.
I’m not in the right skin, and it’s not my body. Everything is unknown to me, I’m scared and I have no control, and even the awareness that it all isn’t real is slowly slipping away. I’m trying to focus on myself and keep me here, but I’m also trying to read all the people in the room, so I can sense if they are judging me. It’s all so much work, and I’m getting more tired every second. I’m going to start crying. I feel huge, the utter center of the room. Disgusting, ugly, fat, UGLY. I want to go I want to go I want to go. The eyes I’m looking out of aren’t mine. The whole room, and the whole world, looks and feels so different. Even the way I see myself when I look down. These aren’t my arms, not my legs that are moving, everything is so BIG. As I move, it happens in slow motion, and I’m filling up the entire room.
Oh, if I could just collapse and sleep at that moment, I think I’d float away in bliss. But everything is so heavy and so thick, I’m just being silently suffocated. Even when it’s all done, the after mass of it lingers on: I HATE LIFE, I’M SICK OF THIS, IT’S NOT WORTH IT TO LEAVE THE HOUSE.” I don’t like that person I become. That person needs to be put to sleep
Instead, she’s with me all the time, and she is going to win. I hate that I’m not stronger, but it’s not even like I’m overcoming myself or my own obstacle, it’s all hers, and she’s not me. She’s the black lining inside my body that I’ve felt for years and years. She’s so ugly and gross, and since I do know that the people around me have no way of knowing it’s not me- I have to act like it’s me the best I can, like everything is under control, or else then I’d really be crazy.


Every morning I wake up worried that it won’t be my face I see in the mirror. If it is, I swallow hard and tell myself I just need to make it through the day and maybe she’ll be gone tomorrow. I try so hard to hold on to myself, to not let her take complete control, but so often I seriously find myself doing erratic, unpredictable things. Completely different things. I call this my “manic attacks”. But I’m never aware of these until I’m back to my regular self, so sometimes I end up really messing things up. It can be so drastic that I have wasted a shitload of money on something I believed at the time was going to be my number one interest...then wake up a few days later, and I have no interest in whatever it was, and it’s gone out of my life. But it meant so much to me yesterday, and now I have no recognition of feeling that way. All I have is the anger that I ended up taking so much time or money on something wasted.
Because I do get lost in this other person. Sometimes it’s like I can keep in contact with myself while the other person is dominating, but other times I’m completely unaware that I’m having a manic attack, and it’s not real. I 100% believe that all I’m feeling at that time is real. There is no other me, this is me. That stupid girl really took me over. Then there are other times I can talk to myself and remind myself it’s not me, just make it through, don’t do anything stupid...I’m still in here And it’s hard, it’s depressing, but it’s a little better. So many changes, I might all of a sudden decide I have no feelings for Matt, what the heck am I doing with him? And if I don’t know I’m not being myself, I’d break up with him, no biggie to me. ‘Course then when that feelings’ gone, I’m desperate to get back what I think really is me, and it’s so confusing. Sometimes I have to ask myself which one is right. Because sometimes it is a little harder to distinguish the differences. IT SUCKS.



One of the most important things to remember is that I don’t recognize the face I see in the mirror. It’s not always the same face that I know isn’t mine, but mostly it’s the same. To me, ugh, it’s so ugly. I brush and brush my hair, put on as much make up as I can, but I can’t get back to looking like myself. My eyes are slanted all gross, and my lips are so stupid and fat they take up my whole face, and my nose is so big you just can’t see past it, and that is not my hair up there. But it’s not just as simple as me not liking my features, because THEY ARE NOT MY FEATURES. I’ll say to my mom, “ I can’t leave the house looking like this.” and she says “You look the same as you do everyday, Dorf.” Which of course makes me more upset because I wonder if I really do look like this and the RIGHT person is the WRONG person in the end??? But I won’t go in public these days, everything is just displaced. I’m not seeing things right out of my eyes, and everything is like what happens when I have my panic attacks. It’s not that I’m not comfortable with myself...it’s that it’s not me, I’m completely unfamiliar with the body I’m in, and it’s horrible.
There’s no way I can explain this to someone on just any day it happens. So silently inside, I’m struggling, while everyone else thinks I’m just lazy or not trying to get up and just make the energy. It’s frustrating, it makes me mad, but what can I do? Just try not to let what everyone else thinks make me feel worse than I already do. At least I’m so aware of my problems, and at least I manage them on my own. It’s just been so long like this, I’m used to it. In high school, I missed a lot of days just because I couldn’t go as the person I didn’t recognize. Man, on days that I did end up going...it was HELL. Can you imagine? ?

I take a lot of prozac and wellbutrin for this stuff. It’s really helped A LOT, because without the prozac, I am 100% the person I hate, all the time, and I know it, but I’m completely stuck, and I’m angry and I attack people, and I can’t control my emotions, and I’m friggin crazy. That’s how I got pregnant, for one. But a lot of other mistakes I’ve made are from this.
....hm, that sounds like I’m trying to blame my problems and bad decisions on something other than just myself, but I swear to you, that was not my thinking. IT WAS NOT ME. You’ll never understand it, no matter what I say, and now I feel like this was so pointless, and I don’t blame you for not understanding I guess.
I'd like to think you have opened your mind and took all this in while not forgetting who I really am. That this has to be the way it is, because you know me and trust me. I will be so thankful for that I worry all the time about not being a good enough friend. ...not being a good mother. I do love Gabrien whether or not I’m myself or the crazy girl, it’s just harder to function and entertain him, but I do it because I love him and he’s here whether or not I’m the right person, he’s my son I don’t forget that.
This was more about my depression issues than my Narcolepsy. I’m exhausted all the time, my life is constantly in confusion, what happened, what did I dream, what do I feel that is real? Now maybe you’ll see why I don’t do anymore than what is in my home, because this is hard enough, on top of having Narcolepsy. ON TOP OF HAVING NARCOLEPSY.