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, 17 January 2011

Oh So Nearly There!

The past couple of weeks have been quite eventful and I'm certainly starting to feel a little more positive about what the year has in store for us. Along with a few of my yard mates we were not sad to see the  back of 2010. It definitely wasn't up to all it had promised!
A week ago I had to have my second cast off  as I was getting a burning sensation around the ankle bone near to where the wound is. Thankfully there was no sign of infection and everything looked nicely healed. The plaster room technician explained it could be from the old cast rubbing although there was no visible sign of blistering. Anyway a new cast has been put on in a lovely shade of hot pink! Well I am a girl ! Plus since having the pink on no one has accidentally kicked it, rammed trolley's or pushchairs into it so it has been a bonus.

From this ......                                                         To this!

That week I also got some better news regarding getting myself graded for para dressage. I had been in contact with every governing body to do with para equestrian dressage including RDA (riding for the disabled) the IPEC (the international para equestrian committee and I had also put in a search and contacted a few national and international para riders who all gave out lots of useful advice.  After reading all the emails I had received, I was filled with a little renewed hope and had been given the contact details of the chief classifier whom I have also since received an email from.
It seems although I may be unclassifiable as an Ehlers-Danlos syndrome sufferer I would however, possibly get a rider profile and grade from the fact I have a femoral nerve palsy as a result of the pelvis stabilisation surgery I had in 2006. I'm hoping to go for a classification with the chief classifier in March.
My next appointment is to have the cast removed which is less than 2 weeks away, so I feel I'm so very nearly there. I think I will have to wear an aircast walking boot for a few weeks but we will have to wait until then to find out what the next step (pardon the pun) will be?!

1 comment:

  1. I am happy for you but I am equally disgusted for EDS'ers everywhere.