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?!
This blog is about my ongoing journey, living with Ehlers Danlos Syndrome. How I battle everyday to do normal things and how riding my horse Pandora gives me the strength to keep going.
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'
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'
Luck! :)
ReplyDeleteWishing you lots of luck. Nerves are expected no matter how often you do something like this. Let us know how you are as you can xx
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