Well hello there, pull up a chair, now are we sitting comfortably? yes? then I'll begin...

Well hello there and welcome to my little corner of the universe. I suppose as this is my first blog post I should start by telling you a little bit about myself and how the idea for this blog came about. 

Hi! I’m K a 40 year old, fiercely independent, woman who much to my annoyance has been severely let down by my own body over the past 10 years following on from, what on paper at least should have been a fairly minor accident. My aim with this blog is most definitely not to continually bleat on about how terrible my life is or how horrible it is to be disabled, because quite frankly I’m fairly sure you can work out for yourselves that being disabled sucks! However regardless of that my life isn’t terrible and I don’t spend huge swathes of time feeling sorry for myself or trying to elicit sympathy as that’s really not my style, I do however face prejudice and injustice on a pretty much daily basis and while some of that is amusing and can be laughed off some of it is totally life changing and has massive knock on effects and if putting those experiences out there into the world makes people think about, talk about or even just acknowledge these then I guess I’ve done a good thing.

Now for the technical bit, I’m most definitely not going to go all ‘Medical Textbook’ on you but the main reasons for my disability stems from a combination of different, but in my case, interlinked conditions, the main two of which are Ehlers Danlos Syndrome (EDS) and Chronic Regional Pain Syndrome* (CRPS) although just because my body appears to think that’s not enough to deal with there is also a borderline Multiple Sclerosis (MS) diagnosis and a, thankfully, mild case of Postural Orthostatic Tachycardia Syndrome (POTS). Now as I have absolutely no medical training whatsoever, I didn’t even manage the First Aider Badge at brownies, I’m not going to attempt to explain any of the complicated medical stuff but will put links at the end of this post to websites that I found helpful when I was researching my diagnosis and trying to get my head round it all.

In the interests of clarity and because let’s face it I like a good waffle, I shall bore you all with a little bit of background info about my life. Growing up life was pretty unremarkable, Dad was a farmer so I had what many would call a fairly idyllic childhood on a farm in the middle of nowhere. We were your average family, consisting of Mum, Dad and 2 daughters with me being the eldest. Looking back now there were a few signs of future health concerns but that’s only with the benefit of hindsight which as we all know is a wondrous thing. I was a very clumsy, accident prone child and it was pretty much a running joke in our house that I practically had my own dedicated cubicle in the local A&E department but as I was quite an adventurous ‘Outdoorsy’ kind of girl this didn’t seem particularly unusual and so largely went unnoticed. I remember spending quite a large amount of time either in plaster casts or with various bits of me bandaged up but on the whole it didn’t really slow me down and life carried on in the usual fashion.

I moved away from the farm and my family in 1994 just before my 18^th birthday and buggered off to London to pursue a career in hospitality. I have always been pretty career minded and so really threw myself into work and into London life in general, my basic principle has always been to work hard & play hard so the big city suited me down to the ground and over the years my career progressed really well. Then in October 2005, in fact to be precise it was Monday 10^th of October, not a date I’m ever likely to forget, I was on my out of work heading towards the pub with my colleague when I tripped while crossing the road. Now a simple trip doesn’t sound like a big deal and honestly it certainly isn’t anything out of the ordinary for me, I mentioned clumsy earlier didn’t I, this fall however turned out to be not so simple and set off a chain reaction of events that saw me having to retire from work due to my health and after some truly horrendous experiences with the NHS lead to my diagnosis and my eventual acceptance of the fact that I will never have another pain free day and no matter how much I like to deny it I have also had to come to terms with certain limitations that my body has imposed on me.

For now I think that’s enough of an introduction, as while I have many more stories to tell about my adventures I’ll save them for future posts.

*just to complicate matters father this was formally known as Reflex Sympathetic Dystrophy (RSD)

Useful Links for more information about the medical stuff

Ehlos Danlos UK 
NHS - Complex Regional Pain Syndrome 
MS Society 
POTS UK