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, 21 September 2011

What a Difference a Day makes?!

Well 180 days infact! Doesnt time fly when you get busy doing something? My husband always say's I like a project, and I seemed to have finally followed this one through!
I started riding Panni not long after the Aircast was removed. It was weeks of just walking on the lead with my good friend there to help me. Once the physio started to kick in I felt the time was right to do some trotting. Unfortunatlly due to the surgery leaving me with a fixed ankle and the amount of time I had out of the saddle I have not been able to do a rising trot with out extreme amounts of pain! Although on a good note I have perfected the art of sitting trot and Im doing it well even if I do say so myself .
Whilst enduring 4 months of physio and hydrotherapy in between the little riding sessions I could manage I really went hell for leather on the para classification process. I finally managed to get some answers as to whether I was elegiable or not and if it was worth me going through the pain and torment of the assessments.
Thankfully I was told, although my Ehlers Danlos Syndrome alone was unclassifiable, I would probably be classified on the fact I sustained a femoral nerve palsy during the surgery to my pelvis. 
Unfortunatly the process was to be a long and laborious one. My GP didnt have any relevent notes on her computor system which diagnosed the femoral nerve palsy back in 2006 so I had to go for new appointments to a neurologist to have the previous diagnosis confirmed before my GP could sign the certificate of diagnosis forms needed .
Eventually I was classified by non other than the chief UK classifier herself  in Maidenhead which was a lot near than I was expected to go before. Although as nervous as I was on arival she was very nice and very positive. She told me I would need to have a ridden assessment which again un-nerved me a little as I wasnt aware this was part of the process. Any way a week later I trundled up the South Bucks RDA and rode one of their school horses. Being truthful it was the worst experiece ever. It has been a long long time since I have ridden a strange horse and a well schooled one at that!
I didnt hear anything for 3 weeks but the day came when a RDA maked envelope appeared on the door step.  It took me 2 hours to pluck the courage to actually open it. I was amazed when I did because it said I was rider profile 19b which means severe paresis of  one lower limb and competition grade IV.
Wahoo!!! I had finally done it!! A year ago today I recieved a letter from a classifying physio in Swindon telling me it wouldnt be in my best interest to be classified as a para rider, and right from the start I knew she was wrong to say this. I have fought long and hard but now it is reality.

Monday, 7 February 2011

Hands Free

Its been 2 weeks since I last saw my consultant. The result of the surgery is looking good and he stated there was no movement in my ankle after jiggling and twisting it a little.  He has put me into an aircast walking boot for 4 weeks and Im already half way through.
It took me a couple of days to go completly hands free as my balance isnt great and the pressure on my heel made it sore for a few days too!! My scar is looking great! Still a shade of purple but it hasnt started to keloid yet.  My leg, well! Ive never seen anything look so pathetic! My muscle tone has completly wasted and my leg resembles that of a twig! Im wondering if it will ever look normal again?
Its nice to be able to sink into a warm bath without having to cock my leg over the side. I can finally relax in bed and not worry about kicking my husband with a big clumpy cast.  I dont think I can ever explain just quite how exhilarating it is to be able to carry a cup of tea from the kitchen to the living room. Its amazing how we take being able to move around with hands free to carry things  for granted until you have to use crutches for 8 weeks!
Anyway Im booked in to be seen again in 2 weeks time to hopefully loose the aircast boot and don a pair of shoes again?! Physio is also due to start in 2 weeks too which Im dreading. Although Im able to remove the aircast I feel a little nervous about moving it and walking on it as it is sort of stuck at a 90' angle and I dont want to stretch out all the repairs and end back at square one.
Im planning on making the appointment to have my para classification in 4 weeks or so. I feel Ive come so far already and the rest of the year is looking brighter already.  

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?!

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!

Thursday, 18 November 2010

Onwards And Upwards

Its been 10 days since my stage 2 op, and Ive been relativly comfortable and recovering well. Unfortunatly I wasnt able to have all surgery in one op as my consultant and I agreed it would be better to stage the operations on the day I had surgery. This would also give us time to decide whether or not stage 3 would be necessary too.
The proviso of having everything done together was that the arthroscopy dosnt take longer than 20 mins but this took around an hour so he wouldnt have been able to proceed anyway. 
I must admit to being a little disappointed, but needs must! It would have been nice to have just the one recovery period etc.. Now Im faced with the decision of  'do I want to go through this again?'  It is the only thing that occupies my mind at the moment but I just know, especially as this is how I felt when I was going through my pelvis stabilization, that I will benefit from all the effort when I come out on the other side.
Im due to see my consultant in 5 days to have bandaging and sutures removed and to discuss how we proceed.  Although the arthroscopy has been done I can still feel the ankle is still incredibly unstable, even through the heavy bandage! It would be nice to get everything done before Christmas then I can be fit for spring?!
On the other hand it isnt all doom and gloom. Ive had my dressage trainer school Panni for me and have come up with a plan for her education while Im unable to ride myself. My trainer seemed very confident that the little niggly issues Ive been working on will come right by the time Im back on board. Im hoping for her to come every 2 weeks so I hope this is enough but any extra sessions is a bonus.          

Thursday, 21 October 2010

Stop The World...

...I really want to get off!!! The past week and a bit have probably been the most emotionally exhausting for quite some time?!
To start off I attended my follow up appointmet with my orthopeadic consultant and we discussed the next step. He basically told me that he will consent me for everything that needs doing, providing the arthroscopy (camera work) dosnt exceed 20mins. This is because the amount of fluid that is forced into the joint during this phase is reabsorbed by my soft tissues and after 20mins it would be a mushy mess and would compromise the healing of the wound if he were to open up. I wont know how much of it will be done until I wake up. If there is a plastercast on my leg, he has managed to do everything. Its still not easy trying to get things arranged as I dont know how long Im going to be off my feet. Its booked for the 8th Nov 2010 so a little over 2 weeks to go before the big day.
My appointment with the orthotisist didnt leave much of an impression and I felt rather fed up when I came away. He has basically ordered aload of catologue splints and braces and didnt seem  to care how each joint affected me and how I needed the the support over them. It was all very matter of fact and didnt treat me like a person at all. Im just waiting now for a call to go and get them fitted. Im really trying to keep an open mind and hope that future appointments will be better?!
I was also supposed to have picked up my new car last week but the DVLA were delayed in sending the correct paperwork so I only collected it yesterday. I got quite upset and had a little cry when I had to leave my lovely little VWGolf behind, but the change is for the better and the new car is already prooving itself to be the right decision.
We spent most of the weekend traveling to the north, visiting family, and with a toddler that is not easy. Four very late nights and early starts was very exhausting for us all! We finally managed to get home late afternoon Tuesday. It has been nice to see everyone but Im glad to be back. Plus I have missed my beloved Panni
Im hoping to spend some time with her this afternoon in this wonderful autumn sun we have here today.