Narcolepsy

I'm on a train, but there's no one at the helm
And there's a demon in my brain who starts to overwhelm whelm whelm whelm whelm
Ooh ooh, ooh ooh, ooh ooh
And there it goes, my last chance for peace
You lay me down, but I get no release, and I say I
I try to keep awake, I try to swim beneath, I try to keep awake
But I, I can feel this narcolepsy slide
Into another nightmare

And there's a demon in my head who starts to play
A nightmare tape loop of what went wrong yesterday
And I hold my breath 'till it's more than I can take
And I close my eyes I dream that I'm awake,

I try to keep awake
I try to keep awake
I try to keep awake, but I
I can feel this Narcolepsy slide
Into another nightmare.

I read dead Russian authors, Volumes at a time
I write everything down except what's on my mind
'Cause my greatest fear is the sucking sound
And then I know I'll never get back out
And there's a bone in my hand that connects to a drink
In a crowded room where the glasses clink
And I'll buy you a beer and we'll drink it deep
Because that keeps me from falling asleep, I said
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
How'd you like to be alone and drowning
Still I find this narcolepsy slide slide, Into another nightmare

Keep awake. Keep awake, Keep awake,
And I can feel this narcolepsy slide - Ben Folds Five, Narcolepsy

I'm sitting here, wanting to say something to someone, but completely unsure of what and who to say it to. It's times like this when I wish I had more close friends. It's times like this when I wish my best friends were closer (vicinity wise). It's times like this when I wish my family didn't just pay lip service to being supportive and caring. It's times like this when I contemplate leaving my boyfriend whose stunted childhood seems to have left him incapable of the type of support I want. It's times like this that I close myself in my home, turn down an invitation to go out that I wanted to take, and somehow manage to do a whole lot of nothing with my free time.

I knew if I went out tonight, it would fill the need to be around people. It might make me feel appreciated and it might even be fun... but with lots on my mind, with the fear I'm trying to wrestle to the ground at the moment, it wasn't a great choice. I feel so alone here lately.

I went in to see a specialist with tons of experience on Friday. I scored an 18 on the Epworth Sleepiness Scale, which is apparently very high. Basically I need further $3000 testing to confirm anything (which my insurance denied, after I was told I could get it done - so now I get to battle that out and likely lose). The unofficial prognosis is that I'm 'suffering from' narcolepsy. This whole idea really freaks me out. I used to have a good friend with this disorder..... she lost her kids, her job, got hugely obese, and was basically what I consider a victim... and likely is to this day, it got to the point where it pervaded her life, she became a toxic person. She lives her life as a victim of her disorder.

I'm lucky.... I don't seem to suffer from one of the four major symptoms: cataplexy (the one you see made fun of in Deuce Bigalow etc.). In fact if I have this disorder I have one of the milder forms (at least for now). I'm just deeply afraid. I'm scared that this is going to change my life, that this is completely out of my control, and it's so hard when I'm having to fight tooth and nail to get the testing when only part of me wants it. I'm scared of the diagnosis. I'm scared of not getting a diagnosis: that this is all in my head. It feels like there is no pretty picture left to me here... I'm either nuts and this is all in my head or I have narcolepsy.

I don't want to be a victim! I don't want to need MORE disclaimers, I have enough of them already!! I already feel like I'm always making excuses. I wish I didn't. I don't want to live that life. I feel like they're becoming a habit.... I won't be a victim. I'm so afraid of that.... I don't want to cry and be afraid. I don't want to have to alter my course to live around this. I don't want to need to tell employers... and the worst part of all to me is that there's nothing I can do!!

I'm most afraid of the fact that I feel like over the last two years this has been an escalating problem. What if I develop cataplexy? What if my symptoms get worse? I get so tired of being afraid. You can't live in what-ifs. What a waste of time. However I still feel like I'm wasting my time in fear...
Today I was afraid to jump while hiking, thanks to my vision (strabismus). I still did it.
Today I was terrified of a few of the dreams I had. I still chose to go back to sleep though.
Today I was scared to go hang out with people. I didn't go.
Today I was scared to tell my boyfriend how afraid I am of the future. I know I won't tell him.
I hate when the fears win.

What I'm working to remember right now is that I got this far. I have come a long way through many things and most of the time I chose a direction that has made me the person I want to be. I'll get myself farther. Surely I will..... I'd really like to know HOW those people with awful problems live so gracefully though. I'd love to have a 'go for it' life. Most of all I wish I could believe that I'm ok. I wish I didn't need to tell my adviser about these things. Do those with something they just have to live with do it so gracefully and so nonchalantly because they choose to not be defined by it? They choose to just live their own way anyway? I want to do that. I really do.

I've been defined by crap all my life, and I sit here wondering how often I've been the one to label myself and then live accordingly. My childhood was ruled by my vision problems, and my mother contributed to that of course. It wasn't the wrong thing to do, I did need to learn that with false depth perception (I learned it, but don't have it naturally) I will have slower reflexes, can't always see steps properly, have trouble jumping over things, can't catch most of the time, strange issues like that. But I can drive!! :D However, I never participated in any sport. I never even thought I could (and it's true that I can't for many of them - but not all). I learned to hate competition, and to sort of be afraid of it because I always thought I would be a let down to my team or myself if I attempted to compete. Lately I've learned there are things I can do though, and I really enjoy them. I'm so glad that light bulb finally went off one day.

I allowed my car accident injuries to kill my love of fitness. Sure, parts of my body HURT for years after that... but so what? Was that a reason to stop going outside??? To stop ever taking long walks? To stop running and working out when I used to be the most physically fit girl in my high school jrotc group (I wanted the navy to pay for my advanced degree, haha, but after the car accident I was in on the way home from unarmed drill practice that idea was out)... Finally, 10 years after my accident I just said - screw this. I started going after changing my body. And it worked. I still don't LOVE fitness the way I used to, but I do it now and I do like it most of the time. I rarely hurt. I conquered this by being smart and having a strategy and believing my body wouldn't let me down if I prepared it properly.

I won't even get into the personal, emotional and other things I've done this sort of process with.

So.... now that I'm faced with another possible life limitation.... how do I overcome this one in a positive way? How do I incorporate it into my self concept without allowing it to rule me and limit me??? If I can't get the testing done, how do I deal? I know with these things you have to be aware of the issues it will cause you in order to both recognize, avoid, and overcome them. Today it's a bigger hurdle than I feel capable of jumping. I'll get there though, I'm trying to fight this tide tonight. Tomorrow I will wake up and remember that I can handle anything I put my mind to. That I made my life what it is, just like I do every single day. In the morning I'll believe that again. In fact, maybe I'll believe something is wrong... but I don't need the diagnosis if I can't get the tests covered for now. Maybe I'll believe that I can just do this myself. Perhaps by incorporating naps into my day (the only purely natural treatment).... perhaps just by uber managing my stress and sleep life. Whatever I decide... I know what leads me to feeling like I can't do it. When I have no support.