About me

Hello! This is me:
This was in Iceland - best country on earth!
My name is Lizzie, I'm in my mid-twenties, I live in Cambridge (England) and I have a condition called Ehlers-Danlos Syndrome (EDS). EDS causes a variety of health problems, and I use this blog both to discuss the problems I have and also to record the ways in which I deal with the illness - both through endless hospital visits and through lots of fun and sport.

I was diagnosed with EDS in 2013, but as it's a genetic disorder I've had it since birth. Early signs included the fact that I never learned to crawl, I had severe growing pains, and all my joints were really unstable throughout childhood and adolescence. I was diagnosed with bad tendonitis in both wrists aged 11, which is really rather young even for a musical child.
Playing my oboe in the Dvorak Hall, Prague, in 2006. I'm next to the girl with the flute and in front of the bassoons!
However, as a youngster, I was very active and did a lot of sport. I particularly enjoyed riding and gymnastics, but unfortunately it was whilst doing gymnastics that I broke my spine, aged 13. I fractured four vertebrae and crushed five discs in the lumbar part of my spine. I was lucky that my spinal cord was not severed, but even so I've had severe pain, muscle spasm and related pain ever since. This injury did turn out to be the first stage in my diagnosis - I went to a rheumatologist who diagnosed me as hypermobile. These days, if you're diagnosed with hypermobility you're also pretty much automatically considered for an EDS diagnosis, but even a decade ago this wasn't standard protocol.
After breaking my back, things got much worse. Having always had silly joints which injured very easily, I was now in constant severe pain. I have never had a single day of not being in pain since the day I hurt my back. I began to have more and more problems with my legs. My knees and ankles were unable to keep me upright a lot of the time, and my legs frequently gave way. I found it harder and harder to co-ordinate movement properly, and the stiffness in my back affected my whole body. Throughout the rest of my time at school, I never did make it back to gymnastics or riding. I was able to start competing in athletics, though, about three years after the accident. I was able to run again, and I specialised in the longer sprints (300m/400m) and was also pretty good at long jump.
...but not much good at hockey! I'm number 9.
It was always really difficult to balance training with my constant injuries, though, and in sixth form I became more and more ill until eventually I had to stop altogether. Now, I also have a variety of systemic illnesses covering hospital departments such as neurology, rheumatology, gastroenterology, cardiology, ophthalmology, audiology, dermatology and otorhinolaryngology (and some more...).
It's just soooo hard to book an appointment with me!
At university, I got involved in rowing. I went to Cambridge, where literally thousands of students give it a go every year. Being short and (at the time!) skinny, I initially learned to cox, but I also enjoyed learning to row and scull, powering myself along. I didn't really get into rowing seriously until my third year.
What 'not getting into rowing seriously' looks like! I'm on the right of this picture. We were smurfs, by the way.
I was coxing the college men's second boat - anything more would have been too much of a time commitment, as I was also singing in a high-powered choir - and loving it. Every Sunday, we went to our outing and then went for lunch at a nearby pub. It was our crew bonding, and we were a really tight-knit bunch. One day, when I got back to college after lunch, my phone rang. It was the college Dean, and he wanted to see me straight away. I walked towards his rooms and my brothers came out. To cut a long story short, my dad had died, suddenly, that morning, and they were there to take me home.
Here we are at my brother's wedding. I'm second in from the right, between my dad and my other brother.
After that, I knew I wanted to get back in the boat as soon as possible. I spent one night at home, missing one outing, then came back so that I wouldn't miss the next one too. Wherever else I went and whatever else I did, my dad wouldn't leave my mind, but when I was in the boat I would have a couple of seconds at a time that were free of grief. He would still pop back in every couple of seconds, but then I'd be able to push it out again because I'd need to concentrate on what I was doing with the boat and my crew. Coxing was literally the only thing that gave me the tiniest bit of relief from grief. Music - which might otherwise have been my fallback - was useless and devastating. My dad had been so supportive of my musical activities all my life and so singing or playing just brought him back to me in a way that I couldn't cope with at that point. A year later, I wrote a song for my composition teacher which incorporated a tune my dad used to play a lot, and that was my therapy there, but in the immediate days and weeks following his heart attack it was rowing - my friends, the river, the wildlife, our coach, the races, the training, all of it - which saved me.
This was taken at a rowing race a week after he died - I'm the one sitting with a daft owl hat and a daft expression!
After that, I wanted to get better at coxing. I became the Coxing Rep on the boat club committee, and read as much as I could about how to be a good cox. I asked for more feedback from coaches, and really made a conscious effort to improve my performance every outing. I trained with the university lightweight rowers and had some fun winning some races whilst also learning new skills. I came back for a fourth year at Cambridge ready to cox the men's first and second boats, and looking forward to the challenge.
Getting a taste of beating Oxford at Kingston Regatta, 2011.
Rowing kept me sane throughout my last year in Cambridge. I owe it a lot. It has also helped me to make many friends and to do some really exciting things. When I left Cambridge and my physical health deteriorated further, therefore, it seemed natural that rowing should be my first 'para sport'. I went along to a Para-Rowing Development Camp where I was classified and had my first opportunity to work with GB rowers and coaches. I was hooked. I chose my Masters (in Music) in part because of opportunities to row in appropriate boats in the nearby area, and I chose where I lived so that I could get to training. I trained almost every day, giving myself one rest day a week. For the first time in my life, I began to build muscle - and I loved it!
At the national para-rowing camp in 2014
When I moved back to Cambridge after my year in London, I wanted to keep rowing, but I also started two new sports. Well, strictly speaking riding wasn't new to me, but it was returning to horses after more than a decade away, and it was new for me to ride with the RDA. I've loved everything I've done with them so far and I'm so grateful for all the opportunities we have.
Me riding Ash with lovely RDA volunteers/Cambridge students Dom (on the left) and Kirsty (on the right)
I have now competed successfully in dressage, showjumping and a whole new activity - vaulting! Vaulting is gymnastics on horseback and is about as insane as it sounds. I absolutely love it and the whole vaulting family that is the Cambridge Vaulting Club.
Putting together a pairs routine with my friend, Emily (she's the one in orange). The horse is called Boris.
I've also started wheelchair racing, which is so much fun and which has definitely given me a new lease of life! It is the only sport I can do without any outside assistance, so it's given me some of the independence that I miss about just being able to go for a run or a cycle.
Preparing to race at St Ives, Cambs, in July 2015
Wheelchair racing has also given me the opportunity to travel about a bit and to go and to take part in events to raise funds for charity. So far I've raised nearly £2000 for the British Heart Foundation!

So, now you know a bit about me, my sports, my history, and my disability. You can find out far more just by searching through this blog. Have a browse or head here to find posts listed under certain categories or here to find out more about EDS and my sports. Enjoy!

1 comment:

  1. Hi Lizzie,
    I'm Mike, and I live in Camillus, NY, USA, near the city of Syracuse. Just discovered you as I am a wheelchair racer too. Read thru your story--I meet a lot of wheelchair athletes since I compete and work with veterans and a non-profit org that focuses on disability sports. I suffered a spinal cord stroke at the age of 55 so I'm a kid in the fraternity of disabilities. (I'm 60 in September.) But this isn't about me--I'm writing just to say "hi" and that you really inspire me. I met a guy at the 15K race I did Sunday who is dying--the docs give him a year because he has a brain tumor and he suffers from Lupus, too. But he pushes to keep active, and by being active, it helps him to forget his pain. And he is so HAPPY!
    SO when I complain about my own pain, or allow myself to dwell and hang out in my own pitty party, it helps me to remember how others deal with their chronic pain.

    Find me on Facebook. You'll see me sitting in a top end racing chair, just like yours, with the foot pedals and same color. ;-)

    Sincerely,
    Mike Smithson

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