|This page has been set up to give you an idea of what sort of person Fiona is. We have included her Dare to Dream video, asked friends what they think of her, as well as including a piece from Fiona herself. Even those of us who know her well, have been surprised by how much we didn't know about her!||
"How do you sum up Fiona? There are so few words that do her courageous and inspirational life justice? To coin an American phrase - she is 'awesome'!
Her mind is so strong, determined and driven - who can blame her body for struggling to keep up? She is humble and modest and yet inspires rich and successful people; she is down in health but never at heart; she is genuine and caring - someone that everyone is proud to call a friend. Whenever I'm feeling sorry for myself I think of her and pull myself together. I'll put it this way: Look up at the night sky - Fi is the brightest star."
A video made by Fiona to challenge others to go for their dreams (6 mins).
|The many faces of Fi!|
Overcoming the problems caused by her condition, Fiona represented Great Britain for 5 years as a disabled swimmer. She won individual medals at the European and World Championships before winning a silver medal at the Sydney 2000 Paralympic Games in the 100m Backstroke. Fiona has also won the Dublin wheelchair marathon and came third in the London wheelchair marathon. She was twice voted Leicestershire Sports Person of the Year and was the first disabled person to win a Sports Scholarship to Loughborough University.
Away from sport and despite being dyslexic she has a degree in Human Biology and is a qualified primary school teacher. Fiona now uses her knowledge and skills to help others in sport through her work for the English Federation of Disability Sport, the Youth Sport Trust and by giving motivational talks in her spare time.
|What it's like to live with EDS - Fiona's thoughts on her condition|
I have never written about living with my condition before, but I am willing to do so, on this basis that you do not read this and feel sorry for me, but that you read this simply to gain understanding. It would be easy to just talk about the pain and dislocations, but this condition is so much more complex and subtle than that; in order to do it justice I will have to include the personal stuff too.
When this goes live, I don't know how I will be able to look you all in the face again! But I do know that if I am not prepared to talk about things openly, then I might as well not bother because you will have no greater understanding than if you had just read the medical description of EDS.
To put it bluntly EDS affects my body from head to my toes, inside and out. There are times when it is a cruel, frustrating condition but, there have also been times when has been 'cool' (like when it enabled me to do contortion work!).
There are bits that I love about my EDS - I love the velvety soft skin it has given me and I love the way my hyperflexibile joints that enabled me to be so good at certain sports. Indeed, without EDS I would not have achieved my childhood dream of competing in an Olympic arena. Not only did my disability make me eligible to compete at the Paralympics, I believe it also helped my performance. I was physically less able than many of the other swimmers in my category, but the hypermobility in my shoulders gave me an exceptionally good stroke helping me to win a silver medal.
However, the rest of the condition, I hate. Much of my life, living with EDS has been like a battle - me against 'IT' and I felt that if I didn't do something because of my disability 'IT' had won. Not a good combination - I can be very stubborn and EDS can be very unforgiving!
I have EDS type III with type II cross over. Basically this means that my joints are all very hypermobile and unstable. I also have some of the problems related to having weak skin and bones. I've had fractures in my feet, face, hand and spine; I've dislocated and semi-dislocated many joints including my shoulders, wrists, ankles, knees, right hip and fingers. Other problems have included a hernia, pneumothorax, internal bleeding, scoliosis, nerve damage...
I could go on, but listing them is boring, and anyway who cares? I don't! They are in the past. The injuries which have been deserved, like dislocating my shoulders trying to roll a canoe, I see merely as the price I had to pay for doing something I really wanted to do. The rest I have no choice but to deal with; if I spent my time worrying about past or possible future medical problems, I would find life even harder.
It's the day to day stuff that sometimes gets to me. Pain is a big feature of my condition and it can be present even without identifiable injury. When I get up I don't know if it will be a good day or a bad day. Something always seems to be hurting and that in itself is embarrassing. If I admitted to all the pains I have, and am in, I would sound like a total hypochondriac. If its just more pain that I'm in I tend not to talk about it. If I'm quiet or seem moody the chances are that it is because I am having to deal with the pain in the background to everything else.
Another frustration is that my joints seem to injure so easily. What to you would might be a light sprain is for me a much more serious injury, lasting weeks rather than days.
I've semi-dislocated my fingers just opening a bottle of coke, dislocated my knee in my sleep, dislocated my shoulder picking up a cup of tea.
What hurts is when people say "What have you done now?" like I am responsible for everything that happens to my body. I get frustrated when I hear this and I have to remind myself that it is probably hard for you to understand because your body works so differently to mine. Sometimes I really haven't done anything, the injury / medical problem has just happened. The words make me feel like an incompetent child. They remind me that I am always in some kind of medical trouble or another.
Another common comment is "You're always injured, you are". I find myself having to bite my tongue. There are times when it makes me want to cry, and others when I want to shout "Do you think I don't know that?!". I want for others to be able understand that it is a part of my condition even though I know it is unreasonable to just expect this. In the same way as someone brittle bones is always breaking them, so with my condition you get multiple injuries and problems related to connective tissue problems. I am the one who has to live with the injuries, but I also have to live with my personality and drive to do things and to experience life to its very fullest even when I know it might result in quite serious injuries.
My condition also causes lots of subtle problems during everyday life. Holding a pen and writing for long is hard because of the laxity in my joints. I can't hold a shower above my head or a hair drier or even plat my hair easily because the muscles rapidly tire in that position. The laxity in the connective tissue to do with my bladder makes me prone to stress incontinence and backflowing of urine back up into my kidneys leading to kidney infections. If I sit up too quickly I feel faint because my blood vessels can't maintain my blood pressure too well. The valves in my arms have blown making the veins appear lumpy when blood accumulates in them. I lose my voice easily because the abnormal connective tissue also affects my voice cords. I can talk easily at normal levels but if I raise my voice too loud or too long then I start to lose it and this can last several days. Though I hate to admit it, I do tire more easily and quickly than others. I have often tried to fight this in the past by taking things like caffeine tablets. But they and my body have a horrible habit of biting back!
The veins in my bum are prolapsed and despite 3 procedures including surgery to correct them, nothing has worked. The surgeon didn't take into account my condition and the stitches ripped through and it all got infected. The tissues have healed but the problem hasn't gone away and is now inoperable as a result of the first lot of surgery. Now I have to just live with it.
Another very difficult issue to live with is the knowledge that it is 50/50 that if I have a child that I will pass my condition on to my child and worse, my child could be more severely affected. I so desperately want to have children one day, but it would be extremely bad for me medically to be pregnant and I have been advised that for my own health I should not get pregnant. If my child had EDS I would feel responsible, like I had inflicted it on them. My own selfish desires to have a child had resulted in a child having to go through a lot of pain and dislocations. I don't know if I will ever have children but it really cuts deep when people say "people like you shouldn't have children" and yes it has been said!