Wake up to Narcolepsy!

Since my mid-teens, I have been battling with a pervasive tiredness. Not a healthy, ’stayed up too late’ tiredness, or a ‘I’ve been working overtime’ tiredness, or even a ‘the kids kept me up most of the night’ tiredness. No, this is something that is here, all the time, and never goes away. You cannot control it, even with good sleep hygiene (that’s what they call going to bed at a regular, sensible time and getting x number of hours sleep etc). I know - I’ve tried it. Go to bed at 11pm, wake at 8am, feeling like a trucks just run into you; go to bed at 8.30pm, get up at 7am, same result. No matter how you change the hours of sleep, or how you prepare for sleep, avoiding alcohol and caffiene, it makes no difference. I still wake every morning feeling worse than when I went to bed. I still wake up throughout the night, and I still end up having as many mini naps as I can sensibly get away with during the day. I’ve had thirty-eight years of experience and experimenting, having no clue what was wrong, and getting nowhere with the medical profession. This, sadly seems to be a common experience among narcoleptics, the average time from the onset of symptoms to the diagnosis is around 15 years, but there are many like myself who have waited longer. I finally got a diagnosis earlier this year, and suddenly, lots of bits in the puzzle came together.

I am writing this blog in an effort to help raise awareness of narcolepsy. One of the reasons I had discounted it as a possble contender for an answer to my sleepiness was because when I thought of narcolepsy, I thought of it in a stereotypical way…the cataplexy being the part that the layman knows about. But like many things in life, it is so much more complex and each individual experiences the condition in their own way, somewhere along a line, mild to severe, much like autism, which is also measured along a continuum.

I am not medically trained and I am in no way an expert, but if I can raise awareness of this condition and maybe help one or two folk get a diagnosis more quickly, the effort spent trying to keep awake whilst writing will be worth it…I have not found medication that works yet. I live in hope

As well as raising awareness, I would love for other narcoleptics to write of their experiences, share their knowledge and help make everyone more alert to the problems narcoleptics face each day. It would also be good, if folk could write stories, poems, articles about narcolepsy. By stories, I mean fictional, although real life stories are welcome if you are happy to share. As an aspiring writer, I’d like to get ‘real’ narcolepsy into literature, not the versions that we sometimes come across that are stereotypical. I’d also encourage people to tell me about good books on narcolepsy, even write reviews, or good internet sites on narcolepsy, which I can then add to the links section for us all to use.

So, I look forward to hearing from you all. Those who write inappropriate comments, by which I mean, anything, threatening, violent, sexually explicit etc will find their entries deleted, as will any comments that are offensive or rude. I would like the blog to be read by young people as well as adults.

So, that’s me started…now, what next?