What's The Point?

I've been a member of this website for a while. I've kind of kept an incognito membership because I'm not one to just start talking about my experiences. I'd rather stay behind the shadows and read about everyone else's and make the occasional comment when I see necessary, but I think it's time for me to share my story. My mom claims that I never slept as a baby. She'd put me in the wind up baby swing, and I'd be quiet while it was swinging. She always thought I was asleep so long as the swing was working, but the moment it stopped I screamed until she cranked it up again. I was a fairly active child, but I never missed nap time or anything. And I had times where my existence seemed foggy where I just wanted all of the other kids to leave me alone. Fast forward to when I was in high school: I was always foggy and a little reclusive during the seventh and eighth grade. I hated school because I felt different and judged. I'd stay up sort of late writing and reading, and I'd sleep through school. I wasn't staying up that late, though. Only until 11:00 or so. By the time I was in the eleventh grade, however, I was sleeping constantly. I'd wake up just in time for me to get ready and get on the bus. I'd sleep on the bus. Go to first period early so I could sleep. Finish my class work as fast as I could each class period so I could sleep. Sleep on the bus ride home. Sleep until my dad woke me up for dinner. Then I'd sleep until the next day where I had to start all over again. It was strange still, though. Because I'd wake up full of energy after each nap, but by the time I accomplished what was expected of me in each class period I was exhausted again. I didn't have a midpoint. I was either one extreme or the other. Bubbly and happy and ready for anything...or I was crashed out on a desk or in a corner somewhere. My parents were getting angry with me. They accused me of staying up all night. They thought I was on drugs! They didn't realize something serious was going on until they started sneaking into my room without my knowledge and found me asleep every time just as I had said. I went to my first sleep specialist. I fell asleep within three to five seconds of laying down and getting comfortable, but all he said was that I have mild central apneas and wrote me a prescription to provigil. It helped for a while but eventually stopped working. I then went to another doctor who ran a sleep study on me while I was on narcotics because I'd just had my wisdom teeth pulled. She basically said the same thing and prescribed me to 10 mg of ritalin, and I pretty much never saw her again. Now, at twenty years old, I'm seeing a new doctor...and I have Narcolepsy? I'm like, "when the hell did that happen? and why wasn't I informed of this sooner?" I'm in my third year of college...and had I known this, maybe I wouldn't have been struggling just to stay above hours. I'm on 54 mg of concerta. It's really helping me stay awake, but I still feel like I'm struggling. I'm so afraid that I'm going to fail. And no one seems to understand or even cares to. Whenever I talk to an instructor about it, they immediately start saying, "well, I can't give you more absences that the other students..." I'M NOT EVEN ASKING FOR THAT! I'm asking for a little bit of understanding. I keep waiting for someone to understand...or at the very least someone who WANTS to understand...but each day it gets harder and harder. I feel myself pulling away from society more and more, and I'm becoming more of the recluse that I've been trying my hardest not to be for so very long. All I remember of my life is incomplete assignments, failed relationships, and sweet sleep. And you know what? I'm beginning to lose my will to fight sleep. I've always wanted to be able to fight my inability to stay awake. I've always wanted a chance...but now, I'm beginning to feel like, "what's the point?" Instead of being forced to sleep by my own body, I feel like all I want to do is sleep...on top of already being incapable of staying awake. I want to be successful, but what's the point of the struggle if I'm all alone anyway? What's the point of all of the work when no one even want to understand? What's the point?
ikkinay ikkinay
18-21, F
5 Responses Sep 4, 2011

Thank you for your story. I don't feel so alone...

Hello there whats the point,<br />
<br />
In 6th grade i started stabing myself with a pencil to stay awake under my desk...that continued Im not even sure how I made it thru highschool...I m not sure how ur getting thru college HATS OFF TO YOU MY GIRL! SO now Im 42 holding a job is SO tough I cant even explain the day I go thru...and its embarressing...no one gets it except for my sweet husband. Im on 250 mg of Nuvigil thats just not enough still sleepy all day long and getting the day started is the worse. Oh yeah I forgot the wonderful part..i talk about myself Im awake ....i listen about others i fall asleep...first time i saw what i was, was in the 90s watching saturday night live and they were doing a Sally Jessey Raffelle hosting her show and the guests were "MALE NARCOLEPTIC STUDS" and my EX husband laughed and said hahahaha hey sweetie THATS YOU! That was the first time i heard the word Narcolepsy. So my point , when times get tough- pull up those big girl panties and get tough back...find support people,family, groups...get informed...find great Drs!!!, surround yourself with tools and information to propell yourself forward..YOU are so young and have so much to offer and this day and age with internet access my mind just reels with your endless potential. Its SO important for us Narcoleptics to help each other!!! PLEASE do keep us informed in all of your trials and hurdels and successes...Iknow there will be many!! Right now I am searching for a website for percentages on Narcoleptics what meds they take and how many work and how many drive and how many actually tell the state at the drivers license place that they are a narcoleptic??? and etc...im looking for the %%%s...If you find a website please do let me know...Thanks my Dear and good luck to you!

You explained my thoughts perfectly. All the meds just make it okay for a while. Some days they hardly work. I'd love to say it will be fine. Hopefully for you it really will, but for me I am in the same place. Right now it's a very dark place. All I do is fight the effects this dark condition. I call it a dark condition because it makes me feel dark, angry sometimes even evil. I actually believe that because I was untreated so long, this condition has given me some kind of personality disorder. All I've done for my weekend, is lay around and do nothing. I've taken 9 dexamphet tabs today alone. My mind has been kind of awake, but my body heavy, and unresponsive. There is so much out there, and I'm starting to believe that all the meds in the world won't allow me to experience what the world has to offer. You're right what is the point. I'm 29, and not getting any younger.

I understand how you feel, I have been hesitant to put myself out here also. Something has to give in your life to make you feel better! Or you will explode from the pressure. Go after all the things this life has for you even if you get tired. Just remember to slow down when you need to or even be really strict about your schedule. All my friends know about my "Sleeping trick" as they call it. you can survive this.

Don't give up hope. I know it's hard, but you can't lose hope. Just know that there are people like you out there that understand. Even if you don't know them, at least know they care because they can relate. And forget the ppl that are like our dumb professors that don't take the time to listen or understand. They're just ignorant. But keep your head up, because you're happiness is worth it.