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, 29 December 2010

Daytime TV and Drugs Dont Mix

Apologies for the delay but, once I finally got out of my drugs induced stupor, Christmas was upon me and I have only just found five minutes to sit down and write this whilst waiting for the vet to come and give Panni her annual vaccinations. So, I am afraid this may be a long one?!
On the 6th December I had, hopefully the last operation to my left ankle. A Brostrom ligament reconstruction! (Many thanks to my friends and colleagues who looked after me) I woke up with a backslab cast from knee to toe. For any one who is unfamiliar with dressings a backslab is a type of cast that only covers the back half of the limb and is bandaged into place. This allowed for the swelling to come and go without causing any circulation problems. I was suprisingly pain free although pain did creep in the more awake I became. Thankfully the recovery nurse took care of that.
Unfortunatly because I was the last patient to go down to theatre I had to stay in overnight again. I had a comfortable night due to the fact my surgeon had injected my ankle with anaesthetic but once it had worn off in the morning, it was agony!! It seemed to take forever to get on top of the pain and the drugs they were giving me were making me incredably sick. I was finally discharged about 4pm but the journey home isnt one I would wish to repeat. I felt every stone in the road and was a little green around the gills to say the least.
I spent the next few days in a drugs induced stupor with only daytime tv to keep me company. I seemed to spend most of the day drifting in and out of consiousness, waking with a start to some strange flog your unwanted rubbish / find me somewhere to live programmes. So I decided after 10 days of that to stop taking the pain relief the hospital had given me and down grade to what I normally take which is a little less hardcore.
At 16 days post op I went to see the consultant to have my sutures removed and a new cast put on. I was sat for some time with my leg down so it swelled up slightly before the nurse removed the sutures and unfortunatly the wound bled so I wasnt able to get a picture of it. It looked really neat and I hope it dosnt keloid on on me as my feet are my best assest in the looks department hehe!
Well, Im sporting a lovely white scotch cast (the fibreglass sort) for the next 5 weeks! Although due to my muscles being hypotonic, the cast seems to get baggier by the day?! So I may need another between now and February.
In the time Ive spent recovering from my recent op Ive been thinking alot about where I want to be next year with regards to competing Panni. It has given me renewed determination to follow up the para dressage grading and Im going to contact the RDA (riding for the disabled association) as they would be my next contact point. Fingers crossed!!

Wednesday, 1 December 2010

Nearly There!

Last week I finally had my 2 week post op review with my consultant. It couldnt have come soon enough as the suture sites where really itchy! These are pictures of how my ankle looked once the bandages where removed. As you can see it was still really swollen and bruised even after 2 weeks. 
Both the consultant and I agreed it would be beneficial to have the next stage done as soon as possible but that depended on space on the operating lists. I was really shocked to find out that I had managed to get a slot on the 6th Dec!! Only a week away Eek!!
We discussed the recovery plan, but trying to convince a surgeon that I am very well behaved as far as this is concerned is no mean feat! Due to my EDS it does take longer to recover from surgery and Im never in any hurry to rush back to work or to the stable yard etc... there is no point in going through it otherwise?! The only thing that is worrying me about the whole thing is the battering my poor wrists are going to get whilst using crutches for up to around 10 weeks. Unfortunatly my wrist supports are not crutch handle friendly so I will have to go without whilst moving around. Ouch!
As far as Panni is concerned, she is currently bearfoot, living out and being looked after by the yard owners. Im missing her terribly as Ive only really been able to see her at weekends. Im hoping to get my trainer out to school her again soon but due to the snow and ice we have had this week, the schooling arena is like concrete. 
Oh well, Im nearly there? Just this op left to go, then let the recovery begin!