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, 21 September 2011

What a Difference a Day makes?!

Well 180 days infact! Doesnt time fly when you get busy doing something? My husband always say's I like a project, and I seemed to have finally followed this one through!
I started riding Panni not long after the Aircast was removed. It was weeks of just walking on the lead with my good friend there to help me. Once the physio started to kick in I felt the time was right to do some trotting. Unfortunatlly due to the surgery leaving me with a fixed ankle and the amount of time I had out of the saddle I have not been able to do a rising trot with out extreme amounts of pain! Although on a good note I have perfected the art of sitting trot and Im doing it well even if I do say so myself .
Whilst enduring 4 months of physio and hydrotherapy in between the little riding sessions I could manage I really went hell for leather on the para classification process. I finally managed to get some answers as to whether I was elegiable or not and if it was worth me going through the pain and torment of the assessments.
Thankfully I was told, although my Ehlers Danlos Syndrome alone was unclassifiable, I would probably be classified on the fact I sustained a femoral nerve palsy during the surgery to my pelvis. 
Unfortunatly the process was to be a long and laborious one. My GP didnt have any relevent notes on her computor system which diagnosed the femoral nerve palsy back in 2006 so I had to go for new appointments to a neurologist to have the previous diagnosis confirmed before my GP could sign the certificate of diagnosis forms needed .
Eventually I was classified by non other than the chief UK classifier herself  in Maidenhead which was a lot near than I was expected to go before. Although as nervous as I was on arival she was very nice and very positive. She told me I would need to have a ridden assessment which again un-nerved me a little as I wasnt aware this was part of the process. Any way a week later I trundled up the South Bucks RDA and rode one of their school horses. Being truthful it was the worst experiece ever. It has been a long long time since I have ridden a strange horse and a well schooled one at that!
I didnt hear anything for 3 weeks but the day came when a RDA maked envelope appeared on the door step.  It took me 2 hours to pluck the courage to actually open it. I was amazed when I did because it said I was rider profile 19b which means severe paresis of  one lower limb and competition grade IV.
Wahoo!!! I had finally done it!! A year ago today I recieved a letter from a classifying physio in Swindon telling me it wouldnt be in my best interest to be classified as a para rider, and right from the start I knew she was wrong to say this. I have fought long and hard but now it is reality.