Narcolepsy and Me

Thought maybe it was time to disclose a bit more about myself (other than as the carer of a crazy clutch of animals).

In my working life I am a child mental health specialist, although I am also a qualified General Nurse (something I usually don't admit to). In my career I have worked with ages spanning birth to grave and in a wide variety of fields; I am also a professional trainer and a semi professional artist and photographer. I am into vintage jewellery and clothes (my wardrobe is like a second hand shop). I totally love collecting pebbles and rocks; everyone I know has been trained to bring me back a pebble or a shell from wherever they go on holiday and that has lead to some amazing things. I can spend happy hours on a beach fossil hunting. I mess around at golf (I only go to drive the buggy really). Obviously I love animals and wildlife, however, I don't like things that fall into my category of "having no feet".

This generally involves arachnids and most insects. Some people try to tell me they have feet. No they don't. Their multitude of legs tend to end in pointy bits and I've never yet seen any of them wearing shoes. That's because they can't, due to having no feet.

Things that simply don't bother with legs either, such as snakes, I quite like. Oh, and by the way, spiders, no..... they are not more afraid of me than I am of them, otherwise they would run in the opposite direction instead of always racing towards me!

What else??? Oh yes, I have my nerdy side, I like D&D, I watch & read Sci-fi and fantasy and, even worse, I am a regular LARPer . There, I said it!

(P.S. My spellcheck has just suggested Leper instead of LARPer - maybe it has a point!).

I am married to my soul mate who I do not feel was conned into this in any way. We lived together for a number of years before I finally said "yes" so he knew full well what he was taking on....mostly.

How was I supposed to know that as well as me the person who is into all the previous, is crappy at the "housewife" stuff, can't cook, thinks fart jokes are funny, still spend hours chatting at him all these years on, (note the AT him), also came with an up and coming large dose of Narcolepsy?????

Narcolepsy, for those of you who are amongst the many who haven't heard of it, is a nasty and lifelong sleep disorder, (actually, sleep disorder goes nowhere near to describing what sufferers can have to put up with).

Like any other condition it can be mild, and it can be totally disabling leading to wheelchairs and all that stuff.
Of course, me being me I have to go ahead and have every symptom possible and even one or two that were a surprise to my specialist.

I have to say, getting to see a specialist when I first realised what was actually going on with my body, (thank you Discovery channel), was fun. I'm pretty sure I'm not the only one who's gone to see their GP and found themselves having to patiently explain to the Doc the difference between some of your symptoms and those of Schizophrenia in order to reassure them that you are not suffering the latter!

I'm lucky, despite the severity of the impact on me, through working with my specialist I am symptom free for 99% of the time thanks to drug therapy and I can pretty much get on with life generally, (although even with the medication there are still some comedians that I can't watch safely, they're too funny and guaranteed to cause a collapse).

Narcolepsy is believed by the experts to be rare (actually I feel it is more common that people realise it's just that many people don't recognise they have a problem, or they think it's down to their lifestyle, or they simply don't seek help and, therefore, diagnosis). For those people who are diagnosed, it can be quite isolating due to not being commonplace.

I personally don't know any other people who have Narcolepsy as part of who they are, I guess maybe that's partly why I've mentioned it. Is their anyone else out there???????????????????

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