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Re: Does no one understand???

Posted by T.R. on December 30, 2001 at 03:26:00:

In Reply to: Does no one understand??? posted by Starr D. Lacey on December 29, 2001 at 18:07:50:

Hi Starr D. Lacey!

I wasn`t sure if I dare answer your post, because I think my narcolepsy is much milder kind than your and anything I say might will sound stupid. I have never fallen down and gained scars tanks to my N (except for cutting my finger once), but I have ruined more computer keybords than I can count on one hand by spilling tea in them during catapelxy attacs (could I by an incurance against this?). And all the things I have mislaid during automatic behavior! It actually got so bad that I had to quit working. I hope it will be better now that I`m on medication, to early to say yet... Doing things while asleep, is very embarrersing and very hard to explain. My husband understands my condition and makes jokes about it, most of the time the kinds of jokes that are not too hurting. But he can also use it aganst me: When we argue about something he will say that how can I be sure on something, I probably were asleep while doing it...
I also have a few more friends that makes jokes about my condition, it`s embarrassing, but then other people also have thing one can make jokes about. After all I think it`s better when one can be open about things.

The problem is all the others that meets me with total silence when I mention my that I have N. I have been sick for a long time without knowing what was the mather and then people always asked how I felt and came with all kind of suggestions: Maybe I had migraine, maybe I was depressed, maybe I could try zone theraphy, etc. When I got a diagnose I thougt it would be much easier to talk about my condition, but no way: As soon as I mention narcolepsy, peolpe grow silent and they don`t want to know what it is. This regards even my parents.
Does anyone know why? Is there some taboo connected to narcolepsy that I don`t know about? Was it something that was looked upon as punishment for your sins in the old days?
My life has gotten much better the last weeks after starting on medications, but I fear I will never be like I was before N. I haven`t started working yet and I`m afraid I can never work as I used to do before. It still seams that the only thing I can do is suffer in silence and not bother anyone with my condition. I think that will make every problem twice as hard.
Starr, if you find and island were everyone has N, I`d love to come with you!
And I will make it one of my new years wishes that 2002 will be much better for you!

T.R.

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