Hurrah! This week, finally I'm getting some proper overnight full on video camera, wired into the grid sleep studies done which mean living in a hospital for a few days.
My journey to wonderland is quite horrific but I guess typical of the frustrating expereince of being seen by doctors who don't know what they are dealing with (they openly admit this) and a disorder that isn't showing the thing most often thought of in the minds eye; collasping when laughing. I don't do that and that's why it's taking over two years to answer the question - "what's wrong with you".
12 doctors, who I won't name obviously have looked at it and shrugged, a couple have said "you have Narcolepsy, we just don't have the evidence to say you do". It's so frustrating, particulary when nobody who you are looking to for support, believes you, or won;t help you because you can't explain or they can't understand.
So mid-week, this week I'm in for Polysomn tests the works and a week after that I'm in for a Multiple Sleep Latency Test and a week after that I get the results a week before my 30th birthday, nice!
Fingers crossed, it's not obvious that I have Narcolepsy and Hypersomnia will do for the time being, I JUST need a word, one word to make other people accept that they SHOULD help me that I can't do this on my own and I do need their understanding. I could also do with some back up, because nobody really believes I have Narcolepsy without Cataplexy. Maybe 2011 will change all that, I'll have a word that people can go home google and come back to me and say they have verified my condition for themselves and believe it exists.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment