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!

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.

Saturday, 9 October 2010

Feeling Positive

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?!

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?!