Check out the Narcolepsy Chats at: TalkAboutSleep.com Chats every Mon & Thurs (check schedule for any changes)
"You never know with Narcolepsy"
I spent my first 30 years of Narcolepsy in the dark. I never allowed my employers to know of my condition. I feared loosing my job. The little knowledge of N. was what I was told by my Dr. Of course we know how little a Dr. will tell us.
My information only began when my Daughter gave me a computer, eight years ago. My education began when I found this site.
I was diagnosed before sleep studies. If you had a number of symptoms, then you had N. I never knew I had hallucinations, instead I had bizarre dreams.
I never knew how lucky I was with my N. I have learned so much about how our symptoms can vary.
Its no wonder that it is hard to explain how N. effects us daily in our lives.
Our friends and family don't understand, because we cant effectively explain the degree of our symptoms. We need a way to rate each symptom of N., so that we could talk to other Narcoleptics and they might know where we are.
A sleep Dr. told me that they would rate patients in that way, but only for long term studies.
Until we can talk to each other and share our place in this condition, with each other, we will never get others to understand.
This still leaves us in the closet!