Re: Who are all of you?

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I’m Sharon. I’m 43 & live in southeastern PA. Diagnosed w/narcolepsy in 2005. Lots of HH, AB, no C. I ran a Christian preschool at my church until a combination of family stresses (handicapped child, grandmother in hospice) and the preschool’s growth proved overwhelming on top of the narcolepsy. It got really bad, and I finally had to stop working. (Bad as in, I couldn’t use a calendar because you have to know what day it is. I would stare at my calendar – my short term memory got so bad that I couldn’t remember what days I had lived through and what days might still upcoming!)

That was two years ago. Since then, with medication and now that I don’t work and can sleep when I need to I’m functional again. But sad – I don’t think I can work again; the preschool was part-time, and I couldn’t hack it. I ended up volunteering to coordinate land purchase to save a park (raised 3.1 million bucks), and that was rewarding, but now it’s over and I’m not sure what’s next. I have always been a super-reliable person and extremely goal oriented, but with N, sometimes I have to break appointments because I’m too tired. Hate it, but I’m learning to live with it. I had an adverse reaction to Xyrem, so I can’t use that, but Provigil and mostly Lunesta to sleep works out okay. Looking back, I have had this since my earliest memories. My cousin was just diagnosed as well. It’s hard to watch her having to make the same self-preservation decisions I did, especially in this economy and with small children, but at least she can see that I’m back to functional and that gives her hope. Which is what I found on this board when I needed it…Thank You to everyone who contributes!

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