So when you are diagnosed with Muscular Dystrophy you are told that "it is a muscles wasting condition with no cure" and it is a double whammy when you are told you have a form of it called Nemaline Myopathy which only 50 people, out of around 65 Million in the UK, have. Oh and I have Arthrogryposis on top which means I was born with no hips, feet bent up to my shins and I think I have had constructive surgery every year of my life (the longest being 11 hours). So it has been eventful to say the least.
So what happens when you find out that there has been funding put into research to help find a treatment to slow down, and potentially stop, muscular atrophy (weakness) for the 50 people like me in the UK and the others likes us around the world? Well it's a bit confusing to be honest. When since the age of 4 you have been raised knowing that as you got older you would get weaker and then you are told that there is a chance that could be stopped. Wow. It's hard not to feel like their is hope. Now I have excepted my condition 110% but I would be lying if I said I didn't like the idea of being able to stay stable and not slowly loose the ability to do things.
So Great Ormond Street have told me I am unique and they can't work out what is going on with my body. But I wonder if the Professor Coen Ottenheijm and Co. can work it out and use it to their advantage? Well I sent him an email to find out. So let's wait and see what he says ...
But in the mean time, here's all the nitty gritty of it for you to read: http://www.musculardystrophyuk.org/grants/putting-the-brakes-on-muscle-atrophy-in-nebulin-based-nemaline-myopathy/
Every year the Charity Muscular Dystrophy UK host an event called the Spirit of Christmas at a number of different Cathedrals around the country in hope to raise money for the charity ahead of the festive period.
I have attended the event at Gloucester Cathedral since it began and the changes seen between now and then are unimaginable!
My favourite memory of this event has to be the year I had surgery on both hips and my right lower leg too. I vowed that I would be up and walking in time for the big day so that I could light the fire candle on my feet. It was very hard work and I wasn't up for long but I did do it!
Each year I light the first candle and on a few occasions I have given a speech. My speech last year went a little like this:
"This event is called the Spirit of Christmas, and being someone who has OCD (in this case Obsessive Christmas Disorder), I associate it with the story of The Christmas Carol. Where Scrooge is visited by 3 spirits. The spirits of past, present and future. I’m sure everyone here knows the story. If not, you're going to hear a slightly different version now; mine.
You know those roller coasters that have the big ups and downs and the loop the loops? Yeah I think that describes my past. I have had some really low lows like numerous operations and stint in intensive care in January 2012 to really high highs like tossing the coin at Wimbledon and Skydiving. Oh and representing Great Britain of course. I believe that everything happens for a reason whether it’s good or bad, it’s a learning curve either way. Excuse the archery pun here but I think this sums up what I am saying well. Life is like an arrow, you have to be pulled back before shooting forward into something amazing. So keep aiming.
Christmas is a time of giving and receiving which people will link to presents. I much prefer giving presents. Using the Christmas spirit to plan and pick gifts carefully, to work out what to paper and ribbons to wrap things in and to see people’s faces when they open them. That’s what I am doing with my present, not the gift kind, but my life right now. I’m taking my time to plan out and make choices carefully. I’m wrapping things up in packages, but not in bubble wrap for sure, and I guess I’m not exactly giving things to my friends and family, but there seems to be smiles on their faces because things are on track. At last.
Which leaves the future, and I can promise you mine has a better future than Scrooge’s did. My last year has been spent recovering from a bug I picked up in Bangkok that hit my tummy hard and breaking my thumb again so having surgery. I have been back into training around 4 weeks now. The next year will be full of excitement. Finishing my college course, and ultimately working toward making the Paralympic Games in Rio September 2016. For any athlete making a games is hard work, but for people like me, with conditions like Muscular Dystrophy, it’s a little bit more of a challenge. It’s a good job I like a challenge!
I guess this is my point here. The past, present and future I have just told you is mine, in a nutshell. Just one person’s story. There are thousands of others out there facing the same thing. Just like Scrooge, he was only one person who got visited by the three spirits that night. Just think how many other people they had to get round. That’s what Muscular Dystrophy UK do. They are the spirits who show people the way when they are lost. Whether it’s struggling to cope with a diagnosis, finding it hard to find the money for equipment or general needing someone to talk to. They do it all. But it is a charity at the end of the day, they can’t do all this without funding.
Just to put this into perspective for you. £16 ensure parents get advice and support after diagnosis via free phone helpline service, £35 support for family for a week, £44 pays for one hour of research, £1897 provides medical beds, £2500 provides trained advocacy ambassador in every region. Some of these figures are high, but penny’s make the pounds as they say so it all adds up. There has already been so much progress made, I want to make sure it continues.
When my day to day life was made easier, it allowed me to make the most of the rest of my life. I wouldn't be the person or athlete I am today without my nearest and dearest, and of course the charity. With a condition like Muscular Dystrophy you never know what’s going to happen next, so making the most of every day and every opportunity is important. So at this time of year, a time for joy and giving, please help me give others with the condition the opportunities that I have had. It is about accepting what is, let go of was and believe in what will be, and with your support it will be a bright future."
And although I may not be speaking this year I enjoy taking in the atmosphere, catching up with old friends and hoping that people help us raise the necessary fund to continue to vital work to change peoples lives with the condition.
So if you are thinking you would enjoy an evening of carols by candles light that can make a big difference? Why not see if there is a Spirit of Christmas event near you: http://www.musculardystrophyuk.org/news/news/come-and-join-us-for-a-magical-evening-of-carols-and-festive-readings/
Well there are many quotes people use when things don't go your way to make you feel better. Primarily "everything happens for a reason". Which, I think, is true. But at that moment in time when your dreams get pulled out from underneath you all you want to know is why?
Which is exactly how I have felt many times. This time it's different though. Missing out on London 2012 because of having glandular fever and a visit to Intensive Care was hard enough and I vowed I wouldn't let anything stop me making the next games once I knew I had a chance of that in archery.
But what a roller coaster that has been to say the least. One with loop the loops and cork screws, big drops and sudden halts. Making the GB squad December 2013 was the perfect christmas present and I spend 2014 representing Great Britain in a number of international tournaments. Even winning a European Championships Bronze and breaking World Records.
But over the course of that summer I got ill, from a parasite I got in Bangkok in the March which hit my digestive system hard and the doctors even threatened feeding tubes at one point, which I refused, but that lead to a long road to recovery. I still can't eat a number of foods now. But I can eat!
Within days of recovering from that I re-broke my thumb ruling out the 2015 season. Many people saying everything happens for a reason of course and I used that to motivate me. A year where I had to rest and crack on with my college work. Before facing the season heading into the Olympics and Paralympics ready to earn my own place in the team this time round. But ... don't be silly Chloe, that isn't happening. A new injury threatened to rule me out of this years games, and that wasn't just a threat. The surgery I had 8 weeks ago secured my ticket out of the games, not on the flight to Rio.
Everyone again throwing the everything happens for a reason quote at me. Telling me how I don't want to go to Rio cause of the Zika virus. Which is true in a way, and I have an opportunity with the BBC which I wouldn't have got if I made the games. So there is the silver lining here for sure.
But everyone seems to forget that not only have I been working the last 4 years to get back into sport and make the Rio Games. I did the same thing before the London Games. 8 years out of a 20 years olds life spent trying to make the biggest sporting event ever. To not make it twice. But thats not just 8 years of my life. Thats 8 years of my family and friends lives too. All of which are backing me 110% to make it third time lucky to secure my place in the 2020 Games in Toyko.
Here is where I am going to be brutally honest though. It sucks, and it hurts. I am proud of every single person who made the ParalympicsGB Team. But every post and picture I see on social media is like salt in a wound. I'm the sort of person to be able to tell you I'm fine about all this, when underneath I want nothing more than to be doing exactly what every other team member are doing.
The kit measurements Paralympics GB asked for. The money saved for my family to join me. The medal the coach told me I would win there. All gone in the blink of an eye. Because that is how short life is, and why everyone should make the most of every second of the day and every opportunity presented to them.
I have spent the last 8 years dedicated to sport, but because I live with Muscular Dystrophy (a muscle wasting condition with no cure) I know what its like for things to change over night. To stay in ICU, to lose a 3rd of your muscle strength in 2 weeks etc etc. Living with a condition that makes me weak has only made me stronger.
So where am I at right now? Well I still ache inside about not making the Paralympic and I am petrified that I may not ever be able to shoot again and yes that is something that I would find hard. But it won't be the end. Because I also have 7 GCSE's A*-B, 6 A Levels of A* Equivalents and work placement at BBC Radio Bristol. For someone who has lost something that meant everything to them, I still have so much, and if I can do that, tell me this. Why can't you? Because there is no such thing as I can't, only I'll try!
I like to say there are no limits to what you can achieve unless you limit yourself. So no matter how many bumps in the road you face, the hardest roads are always the ones worth taking and if any point you don't think you are going in the right direction there are always turnings and roundabouts along the way.
Don't be afraid of change and challenges. It will all make you stronger and one day when someone says everything happens for a reason. You will look back and see exactly what they mean. The past is the past yes but sometimes you need to look back to see just how far you have come!