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, 23 September 2010

Disappointed, But More Determined!

After what seemed to be a good result following my recent treatment, Ive had a pretty rubbish week.
Firstly I received a call from the pre-op nurse who took blood and urine before my injections stating that I had a urine infection. She had already faxed the results to my GP and a prescription of antibiotics would be waiting for me at the surgery. This will be the umpteenth urine infection I have had this year! Due to my allergy to Trimethoprim they have given me something else and it is making me feel really green around the gills. Im asymtomatic until I have to undergo tests like these and Im begining to wonder if the EDS has anything to do with it? I really cant face the GP surgery again this month so I'll hang on abit.
Secondly, I opened a letter from the British Dressage Para grading team stating that 'it would not be in my best interest to be classified for competition in disabled dressage' Although they do acknowledge I do have a disabilty they speculate and assume they would only measure a small amount of loss of strength in my limbs?! They go on to say that if they graded me, it would be a grade which I would be expected to canter and then the danger of falling off and dislocating a joint would be unacceptable.
I feel I have been dealt yet another blow from the medical professionals and in a round about way of saying it they dont think I should be riding. After all, during able bodied competition I have to ride tests that include canter work and the risk of me falling is probably greater. It wasnt just about the competion, I would have liked to have benefitted from the training sessions and clinics that are available as a para, to help me develop my way of riding. Anyway I havnt given up just yet, I will persue this I just dont have the mental strength to at the present.
To end on a good note, I did manage to go out on a gentle hack on Sunday. My yard mate took me around a new route which was very pleasent even though Panni did make me get off to lead her through a ford!

Wednesday, 15 September 2010

1 Down ??? To Go!

Well I really dont know what I was worrying about?! I think the fact that I work in the theatre department of the hospital I am being treated in helped, as I knew the surgical and anaesthetic team really well and was able to discuss things with them freely, made the difference.
Its amazing how somewhere you are so used to becomes so unrecognisable from the level of a hospital bed! The anaesthetic room just looked tiny and the whole process seemed to be alot quicker, but then Im used to the setting up of equipment etc before the patient arrives.
Anyway induction of anaesthetic was smooth and my recovery was quick. I didnt feel as grotty as I did when I had my pelvis done but I was only in theatre for about half an hour this time.
Im looking forward to seeing my consultant in a couple of weeks as when he came to see me in recovery he stated the plan of treatment may change due to what he found duing the manipulation of my ankles. Sounds like less surgery which would be a bonus.
I left hospital relitivly comfortable  at 6pm but I was woken up at 3am in a little pain. This was due to the maniplution and I was expecting it to be sore, nothing I havnt coped with before.
I spent most of yesterday resting in front of the rubbish daytime telly, and after some begging managed to convince my husband that taking me up to the stable would be good for me, fresh air and a change of scene and all that. Plus he did some poo picking for me whilst I took a pew and chated to my mates.
I have the rest of the week off before I return to work so might be able to squeeze in a gentle 20 hack this weekend but Im going to take things easy for now.

Sunday, 12 September 2010

The Day Before The Big Day

As it has taken me so long to get this blog together, I am writing my first post the day before my first operation. Phase 1, xray guided injection and examination under anaesthetic. Eek Im getting nervous now! I dont know why really, Im a season ticket holder to the operating theatre?!
Ive spent the week trying to catch up on chores and prepare for not doing alot next week. Its amazing how you fall behind with things when you take a few days to rest. Ive been in quite a fair bit of pain over the last couple of weeks and the simple act of standing has been torture.
Im trying not to get my hopes raised too much as I have had injections of this nature before to my pelvis which weren't exactly successful.
Anyway Im off to spend a little time with Panni this afternoon to take my mind of tomorrow. Wish me luck?!