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'

Thursday, 18 November 2010

Onwards And Upwards

Its been 10 days since my stage 2 op, and Ive been relativly comfortable and recovering well. Unfortunatly I wasnt able to have all surgery in one op as my consultant and I agreed it would be better to stage the operations on the day I had surgery. This would also give us time to decide whether or not stage 3 would be necessary too.
The proviso of having everything done together was that the arthroscopy dosnt take longer than 20 mins but this took around an hour so he wouldnt have been able to proceed anyway. 
I must admit to being a little disappointed, but needs must! It would have been nice to have just the one recovery period etc.. Now Im faced with the decision of  'do I want to go through this again?'  It is the only thing that occupies my mind at the moment but I just know, especially as this is how I felt when I was going through my pelvis stabilization, that I will benefit from all the effort when I come out on the other side.
Im due to see my consultant in 5 days to have bandaging and sutures removed and to discuss how we proceed.  Although the arthroscopy has been done I can still feel the ankle is still incredibly unstable, even through the heavy bandage! It would be nice to get everything done before Christmas then I can be fit for spring?!
On the other hand it isnt all doom and gloom. Ive had my dressage trainer school Panni for me and have come up with a plan for her education while Im unable to ride myself. My trainer seemed very confident that the little niggly issues Ive been working on will come right by the time Im back on board. Im hoping for her to come every 2 weeks so I hope this is enough but any extra sessions is a bonus.