Narcolepsy Forum Posting

Posted by Starr on February 02, 2002 at 13:34:06:

Hello to all. It seems that I am in yet another sad mood. However, I think that we all have them eventually. Ecspecially us PWN. I was just sitting here watching Labyrinth with David Bowie, and it's like I almost wish there really was a place like the Labyrinth. Why? I am not really sure. I guess anywhere other then here sounds somewhat better. At times, I feel so alone. I have an attack, bloody and battered, and there is no one there to help me up. This is the some routine that I go through day after day. I get so bored at times I will just sit and obsessively clean things. I am sure it is part of my OCD. I still have not found a new doctor yet, and I am still on 800mg/day of Provigil, 80mg/day of Prozac, 60mg/day of Adderall, and 20mg/day of Vivactil. And still none of these meds are even tainting my symptoms. The only bad thing is that until I get a doctor, I am still going to have multiple attacks with just more injuries, and then more accusations of self injury. I honestly thought about getting people to write me and share their experiences then take them to that lame doctor that thinks I am SI'ing. It is absolutely crazy what these doc's can do to anyone. I have been asked recently by my therapist, "do you have times where you are awake, and black out for a long length of time, and then come back, and realize that you cannot remember what you had been doing all hour?" I honestly thought about just shaking her and saying, "do you have any idea of what it is like to be a PWN, and have people you trust accuse you of unheard things?" I am sure all of us PWN keep track of the time. I am just a tiny bit obsessed with it. The reason being that I like to try to keep track of how long my attacks are so I can document them. At times I feel so alone...like I am the only one with N. Even though I know there are thousands more, I feel alone because no one seems to understand, or care for that matter. Recently, while shoping with my mother, we went in to Wal-Mart and I had an attack (sleep attack w/ severe C)and fell right on the shelves, and then about 10 minutes later when I awoke, the humiliation of while I was out my half witted mother trying to explain to everyone what was wrong with me even embarrassed me more. It seems no one has ever heard of N and if they have, they think of that movie Deuce- whatever, I cannot remember, or the classic is a recently released song by JayZ named girls, girls, girls, that had a lovely misrepresentation oof N by having a girls hair tied to a rope. I just want to write the people that make that stuff up, and explain to them that if I actually tied my hair to a rope to hold my head, it would tear my entire scalp off, causing me a serious injury. I apologize for the long rant and ravings that it seems I feel that I always have to share with strangers. Life, I hardly think that in my current circumstances "life" is even the label to score me with. I mean, yes I am alive, breathing, and lots of sleeping, but a life? I honestly have no life whatsoever other than typing my fellow PWN here on the forum. The other day my friends came over and they suggested that we all go and play laser tag. At first, the idea sounded like fun, then I realized that there was no way in the world I could actually survive 1 game. It's for the most part completely dark, the vests have a vibrating mechinism that scares me,and the list goes on forever. So it comes to the point of whether I live in safety and make everyone around me resent me for not being able to do that many things, or I go and take a chance and the whole bunch land in the ER yet again. If we were to go to the ER, then they would probably feel guilty, and no longer even ask me if I want to go with them. Any suggestions? I mean honestly, I had been waiting for over a year for the LOR movie to come out, and since my N started in Aug 2001, the movie came out Dec that same year, and I am just to scared to go because I may fall asleep and miss a part, then I would have to go back time an time again in hopes that I do not fall asleep yet again. I do not mean to be all "paranoid" but I have substained so many injuries from this condition, I am dreading summer, because it will just expose new areas of my body to be injured during an attack. Plus, I already have over 50 scars from N. There really is no particular place that they aren't. Well, I must go. Starr

Follow Ups:

• Re: Alone with N??? Big Sleepy 15:37 2/02/02 (0)
• Not Alone, We're here! sleepykitty 13:55 2/02/02 (2)
  • Re: Not Alone, We're here! Starr 14:58 2/03/02 (1)
    • Re: Not Alone, We're here! sleepykitty 15:51 2/03/02 (0)

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