Although I have encountered a couple of ups and downs, this past week has been a great week!
I had a brilliant lesson with my dressage instructor. Panni was very fresh and particularly forward going as a result. My instructor seemed to like this and commented on how well she looked. We discussed my recent letter with regard to para dressage grading and with her support I feel a lot more positive about pursuing it further.
The lesson was very productive and we started bringing in lateral work. I didnt feel like I had worked any harder than we normally do in our lessons and I had been given plenty of rest breaks, but on dismounting I nearly hit the deck which was very embarrassing in front of everyone. My legs had been feeling dull and lazy for a few days before hand and for some reason they just didnt want to hold me up. Thankfully I still had hold of my saddle and my friend was immediatly behind me. It wasnt long before my knees started to engage and my legs began to do their job and I was able to walk Panni back to the stables. Although scary at the time I can have a little giggle to myself about it now. I have dusted off my hikers walking sticks to keep in the car should my legs feel dull and lazy again, but part of me feels like Im giving in if I start using them again?!
The other good thing to come out of this weeks events is a new car!! After months of trawling the internet we went to see another car at this garage and stubbled across this really cute looking BMW X3 sport. It really is perfect and ticks all the right boxes. Im just waiting to collect it in a few days time. It will be heaven to drive my own automatic car rather than pinching my husbands at every opportunity.
So hopefully next week will be as good as the one just past. I have a new car coming, I also have an appointment with my ankle surgeon to discuss further treatment and an appointment with an orthotisist who will be able to provide me with more functional splints and braces, fingers crossed?!
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'
Saturday, 9 October 2010
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!
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.
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?!
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?!
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