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I'm 25, look 15 but feel 75 most of the time. Narcolepsy...

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Guest
Guest

I'm 25, look 15 but feel 75 most of the time.

Narcolepsy is such a pain in the neck, not only the frustration you feel not being able to do the things you want and generally achieving little, but the other side of it which I find hard is having to explain to people all the time and have them think your a lazy good for nothing etc...

I have lost my driving lisence,job and ability to meet new people other than to have meaningless conversations (you know the ones!)

I don't think anyone can fully appreciate how debillitating narcolepsy can be to body and mind, my life seems like a crazy blur and can't see a way out, it's so damn annoying!

Anyone who has this should talk about it a lot, not only on these sites but to those nearest you, I find it really does help. (BOOZE DOESN'T).

[i:15e821b0b0]This message was automatically imported from the original Patient Experience[/i:15e821b0b0]

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hey there there is a little light at the end of the long sleepy tunnel, believe in yourself mate or the medication will bring you down with a thud. WHY did you lose your driving lisence thou as i still got mine and have 10 years no claims too :headhurts:

    [i:7660fbf483]This message was automatically imported from the original Patient Experience[/i:7660fbf483]

  • Guest
    Guest

    Posted

    Hi, I am 28 and have been fully medicated now for just over 3 years now, for narcolepsy and cataplexy equally. I've always been knon as sleepy jo, so most of my friends/collegues were not to shocked when i told them about my condition. I'm quite an outgoing person as it is so i don't tend to let it get to me. If i need to sleep then that is what i do, kind of like, embracing the enemy, if you know what i mean.

    I'm currently in a longterm relationship of 3 years, i had a beautiful baby boy on 20/12/2006 and i am getting married on 31/5/2008.

    So you see a normal life is possible, i do tand to tell everyone that i meet about it to try and educate!! I find just laughter is a great way of getting through the day, and any embarassing moments. There are people out there with much worse conditions than mine, and mine is quite potent, i dont just have it a little bit, with out meds i am of no use to anyone, so i am greatful for being able to control my condition and having the support of family and friends.

    Positive thinking is your friend, there's nothing you can't do! ( even if thats not strictly true!

    If you ever need to talk or have any questions. It's good to have people who know what your going through xxx

    Take care xxx

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  • nicole120103
    nicole120103 Guest

    Posted

    I agree 100%, the silent illness is very frustrating and depressing!! I miss my old self daily sad 

    Lately I find my medications are not working. My husband is supportive for the most part, but I also know he gets frustrated often too! Which doesn't help, just makes me feel even worse. I'm lucky to have a handful of friends that understand, they don't judge, they don't get mad when I cancel or reschedule at the last minute.

    I'm currently on Adderall 80mg/day. 40 in the am and 40 at noon. I also take Effexor for anxiety/depression. And I am in the process of getting my new prescription of Xyrem. I also have a small dose sleeping pill to take as needed, for insomnia.

     

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