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'

Monday, 7 February 2011

Hands Free

Its been 2 weeks since I last saw my consultant. The result of the surgery is looking good and he stated there was no movement in my ankle after jiggling and twisting it a little.  He has put me into an aircast walking boot for 4 weeks and Im already half way through.
It took me a couple of days to go completly hands free as my balance isnt great and the pressure on my heel made it sore for a few days too!! My scar is looking great! Still a shade of purple but it hasnt started to keloid yet.  My leg, well! Ive never seen anything look so pathetic! My muscle tone has completly wasted and my leg resembles that of a twig! Im wondering if it will ever look normal again?
Its nice to be able to sink into a warm bath without having to cock my leg over the side. I can finally relax in bed and not worry about kicking my husband with a big clumpy cast.  I dont think I can ever explain just quite how exhilarating it is to be able to carry a cup of tea from the kitchen to the living room. Its amazing how we take being able to move around with hands free to carry things  for granted until you have to use crutches for 8 weeks!
Anyway Im booked in to be seen again in 2 weeks time to hopefully loose the aircast boot and don a pair of shoes again?! Physio is also due to start in 2 weeks too which Im dreading. Although Im able to remove the aircast I feel a little nervous about moving it and walking on it as it is sort of stuck at a 90' angle and I dont want to stretch out all the repairs and end back at square one.
Im planning on making the appointment to have my para classification in 4 weeks or so. I feel Ive come so far already and the rest of the year is looking brighter already.