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, 21 October 2010

Stop The World...

...I really want to get off!!! The past week and a bit have probably been the most emotionally exhausting for quite some time?!
To start off I attended my follow up appointmet with my orthopeadic consultant and we discussed the next step. He basically told me that he will consent me for everything that needs doing, providing the arthroscopy (camera work) dosnt exceed 20mins. This is because the amount of fluid that is forced into the joint during this phase is reabsorbed by my soft tissues and after 20mins it would be a mushy mess and would compromise the healing of the wound if he were to open up. I wont know how much of it will be done until I wake up. If there is a plastercast on my leg, he has managed to do everything. Its still not easy trying to get things arranged as I dont know how long Im going to be off my feet. Its booked for the 8th Nov 2010 so a little over 2 weeks to go before the big day.
My appointment with the orthotisist didnt leave much of an impression and I felt rather fed up when I came away. He has basically ordered aload of catologue splints and braces and didnt seem  to care how each joint affected me and how I needed the the support over them. It was all very matter of fact and didnt treat me like a person at all. Im just waiting now for a call to go and get them fitted. Im really trying to keep an open mind and hope that future appointments will be better?!
I was also supposed to have picked up my new car last week but the DVLA were delayed in sending the correct paperwork so I only collected it yesterday. I got quite upset and had a little cry when I had to leave my lovely little VWGolf behind, but the change is for the better and the new car is already prooving itself to be the right decision.
We spent most of the weekend traveling to the north, visiting family, and with a toddler that is not easy. Four very late nights and early starts was very exhausting for us all! We finally managed to get home late afternoon Tuesday. It has been nice to see everyone but Im glad to be back. Plus I have missed my beloved Panni
Im hoping to spend some time with her this afternoon in this wonderful autumn sun we have here today.

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