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Re: Letting go,again!..:-(

Posted by Lorna on December 11, 2000 at 11:59:00:

In Reply to: Re: Letting go,again!..:-( posted by rip van winkel on December 10, 2000 at 18:29:57:

Sorry this is long. I am not guaranteeing it is worth it either!

My worst place seems to be the supermarket too! People get mad at me for not keeping up the pace and being in a daze. I am constantly apologizing to elderly and disabled people who, ironically, are the most intolerant of me not responding to their needs (ie. moving out of their way in time because my mind is asleep). I find it ironic that they demand tolerance and special treatment for their disability and yet don't entertain the fact that I too could be struggling to overcome my sleepiness and daze to appear that normal they expect I ought to be given my age and apparent good health.

I am learning to be more tolerant of everyone, after all you never know from looking at a person what they are going through inside.
One day I'll just snap, followed by a cataplexy, but it will only be one lesson learned by one person, there are millions of intolerant people out there.

There are acceptable disabilites and I think that brain disorders in general are unacceptable to society still. The para-olympic competitors are admired for 'overcoming' their disabilities. When we manage to go on despite the odds people just presume we cannot be as ill as they at first thought.

One of the most difficult things about this for me is that I have made such a effort to disguise my sleepiness (I thought I was lethargic due to not getting enough exercise- I walk probably 2 miles a day(!)). Now, when I mention to my extended family and friends I will probably be taking amphetamines to help me they say I should absolutely not. They have no idea. I want a life just like they have.

Sometimes I wish my eyes changed colour or something, when my sleepiness is worst, or a low-consciousness indicator. Something visable, so that people would know and understand.

I am very lucky to have an extremely understanding husband who sometimes can even see my sleep-attacks almost as soon as I am aware of them. I think I am going to get him to educate a few other 'normal' people.

I am trying to get in touch with others with narcolepsy in my area. It would be great just to have that mutual understanding. Has anyone actually had the chance to meet a person with the condition?

Lorna

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