The expression 'If you hear hoof beats, think of horses not zebras' is used by the medical profession and this phrase sums up the philosophy that it is generally more productive to look for common rather than exotic causes for a disease. I was diagnosed with EDS type III in 2005 after battling with my symptoms for 12 years. So, just getting a diagnosis can be an heroic undertaking in a system designed for horses. Being a zebra can be a very lonely, confusing and frustrating place.

For those of you who are unfamiliar with Ehlers Danlos syndrome, it is a rare genetic connective tissue disorder that affects the body's production of collagen. Every collagen cell in my body is faulty and allows my skin, tendons, ligaments, bowel and vascular tissue to be super stretchy. This means that I suffer with tremendously low blood pressure, IBS, and joints that are all incredibly unstable and frequently sprain, or subluxate, even dislocate during the course of the day. My muscles will tighten up or 'cease up' to do the job my tendons and ligaments aren’t doing, this equals limited mobility and chronic pain most of the time. My skin is also affected and can tear and bruise easily and takes longer to heal which isn’t great for surgery. I will look like I’m 30 years old when I’m 60 but at the moment I feel like a 60 year old at 30! The most frustrating part about this syndrome is that I outwardly look normal, and people just cannot understand how I can be in so much pain and have so many limitations.

In 2006 I had corrective surgery to stabilize my pelvis, which took 9 months to rehabilitate from as I suffered a femoral nerve palsy, which means I now have very little or no feeling or control of my left leg. I was told by all medical professional that treated me through this period I should discontinue riding. But, I am a stubborn sort and battled against everyone’s advice and the extreme pain to keep on riding. This summer with the help and support of my instructor and friends Pandora and I competed in our first ever British Dressage test and came 6th. I’m hoping to maybe get a classification for riding British Dressage Para's in the future but, unfortunately I am facing further surgery to stabilize my ankles so will be hanging up my reins for a little while.

This blog is to document my journey through surgery, my determination to succeed with British Dressage and the general ups and downs of life living with Ehlers Danlos syndrome. Not only for my own sanity but, hopefully to inspire others with disabilities to take life by the horns and achieve the best they can too.

My moto in life is 'dont focus on what you cannot do, but find what you can do and do it in an awsome way'

Wednesday, 15 September 2010

1 Down ??? To Go!

Well I really dont know what I was worrying about?! I think the fact that I work in the theatre department of the hospital I am being treated in helped, as I knew the surgical and anaesthetic team really well and was able to discuss things with them freely, made the difference.
Its amazing how somewhere you are so used to becomes so unrecognisable from the level of a hospital bed! The anaesthetic room just looked tiny and the whole process seemed to be alot quicker, but then Im used to the setting up of equipment etc before the patient arrives.
Anyway induction of anaesthetic was smooth and my recovery was quick. I didnt feel as grotty as I did when I had my pelvis done but I was only in theatre for about half an hour this time.
Im looking forward to seeing my consultant in a couple of weeks as when he came to see me in recovery he stated the plan of treatment may change due to what he found duing the manipulation of my ankles. Sounds like less surgery which would be a bonus.
I left hospital relitivly comfortable  at 6pm but I was woken up at 3am in a little pain. This was due to the maniplution and I was expecting it to be sore, nothing I havnt coped with before.
I spent most of yesterday resting in front of the rubbish daytime telly, and after some begging managed to convince my husband that taking me up to the stable would be good for me, fresh air and a change of scene and all that. Plus he did some poo picking for me whilst I took a pew and chated to my mates.
I have the rest of the week off before I return to work so might be able to squeeze in a gentle 20 hack this weekend but Im going to take things easy for now.

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