So, this last week has been CF week. To celebrate the success of the work of the CF trust, individuals, families and anyone who is affected by Cystic Fibrosis are sharing their stories to spread the word and celebrate the wonderfully powerful cf community. Realising just in time to avoid missing the boat, I want to share my story with you all.
Despite what you may think from reading my blog so far this year, I've never really thought I had a story to share. I wouldn't say I had anything of note or anything particularly interesting to share really, but I guess that leads me on nicely to what I've decided to share.
My Life with Cystic Fibrosis
I was diagnosed with cystic fibrosis aged around 6 months. I imagine it was mixed feelings for my family. Not a particularly nice thing to happen, but after a having a very stubborn baby, infamous on the children's ward for refusing to eat and throwing up whatever I did eat, I imagine it was a bittersweet relief to have a treatable diagnosis.
My claim to fame is probably not the most desirable, but (medical history enthusiasts correct me if I'm wrong) I was the first cf patient to display an allergic reaction to pancrease hl, a tablet that has since been replaced in my treatment and many more by creon. Sadly, being the first meant that bowel strictures were blamed by something else until after the second operation in two years to remove the two thirds of bowel that had become redundant.
After a rocky couple of years though, I was back on track and started as I meant to go on. By all accounts, I was a bubbly little kid, constantly trying (and managing btw) to keep with two older brothers, racing wherever we went. Anything they did, I wanted to do. When they played outside, that's where I wanted to be, unaware that there should be any reason why I shouldn't be. And, to the surprise of other parents, that is exactly what mum and dad allowed me to do. I might have had more layers on than the michelin man when going outside, but I was never allowed to think there was anything different about me.
That is exactly why I didn't think I had much of a story to tell. The support from my family and friends throughout my life has meant that I can go about my day-to-day life without much fuss and I've been given a very normal life. No one has ever made a fuss about the treatments, friends at new schools, people at Uni never saw it as anything abnormal. That was massive for me. There were a few big transitional periods in my life that aren't easy for anyone growing up, that had potential to be really difficult for someone with cystic fibrosis. What I've learnt in life, though, is that everything is relative. Everybody has little things in their life that they are self-conscious about and that can be a barrier when meeting new people. That is all part of life though and we all accept each other for who we are. We don't have to be defined by those things and I like to think I'm not defined by cf. There are countless experiences I wouldn't have had without having cf that have made me who I am today and I am more than happy with that, but my life is so much more than cystic fibrosis. There have been some tough times as well. As a cf patient, it can feel like a constant battle at times. When everything seems to go wrong at once, there have been a few times when it's got the better of me, but there has always been people around me to dust me down, pick me up and win those battles.
At 6 months old, it's fair to say, things looked pretty bleak. 3 years and 2 operations later, things probably didn't look much better. Now though, I'm a healthy 24 year old with some great experiences behind me and, I think, I'm now on the verge of something pretty special. Everything I have gone through so far in life has lead me to this year. I have received and continue to receive so much support from family, friends, doctors, nurses that I felt I had to give something back. Everything that everyone has done for me up to now has allowed to me to stay fit and healthy, which is exactly why I set up Fifteen for '15. Fifteen events in 2015 to raise money for the Cystic Fibrosis Trust. Sunday 14th June sees me take on the biggest challenge of my life - the rock 'n' roll marathon. This is just challenge number 5 out of fifteen though...
So, that's my story. It's really one of thanks - to all the people that have helped me along the way, all the hospital staff that kept me going, my mum and dad for taking everything in their stride over the years and encouraging me to be 'normal', my brothers for 'letting me win races' when I was little and supporting me through the years, my two cousins for being like sisters and eveyone else in my family, you've all made such a huge difference to and my friends for never treating me any different to anyone else. Thank you all for the ongoing support, the hospital visits, the weight gaining incentives, the hours of physio, iv injections, absolutely everything!!! Finally, a massive thank you to everyone getting involved this year. I am overwhelmed by the support and willingness of people to give up their time to do all these crazy challenges I've lined up. Next time I have a bright idea, feel free to quash it in the early stages. My story is also becoming one of pride as well. At the end of this year, if we can beat our fundraising target, I'll be quite satisfied that we have all completed something pretty special and I am starting to feel like I have a story to tell.
Sean
www.justgiving.com/15for15
Despite what you may think from reading my blog so far this year, I've never really thought I had a story to share. I wouldn't say I had anything of note or anything particularly interesting to share really, but I guess that leads me on nicely to what I've decided to share.
My Life with Cystic Fibrosis
I was diagnosed with cystic fibrosis aged around 6 months. I imagine it was mixed feelings for my family. Not a particularly nice thing to happen, but after a having a very stubborn baby, infamous on the children's ward for refusing to eat and throwing up whatever I did eat, I imagine it was a bittersweet relief to have a treatable diagnosis.
My claim to fame is probably not the most desirable, but (medical history enthusiasts correct me if I'm wrong) I was the first cf patient to display an allergic reaction to pancrease hl, a tablet that has since been replaced in my treatment and many more by creon. Sadly, being the first meant that bowel strictures were blamed by something else until after the second operation in two years to remove the two thirds of bowel that had become redundant.
After a rocky couple of years though, I was back on track and started as I meant to go on. By all accounts, I was a bubbly little kid, constantly trying (and managing btw) to keep with two older brothers, racing wherever we went. Anything they did, I wanted to do. When they played outside, that's where I wanted to be, unaware that there should be any reason why I shouldn't be. And, to the surprise of other parents, that is exactly what mum and dad allowed me to do. I might have had more layers on than the michelin man when going outside, but I was never allowed to think there was anything different about me.
That is exactly why I didn't think I had much of a story to tell. The support from my family and friends throughout my life has meant that I can go about my day-to-day life without much fuss and I've been given a very normal life. No one has ever made a fuss about the treatments, friends at new schools, people at Uni never saw it as anything abnormal. That was massive for me. There were a few big transitional periods in my life that aren't easy for anyone growing up, that had potential to be really difficult for someone with cystic fibrosis. What I've learnt in life, though, is that everything is relative. Everybody has little things in their life that they are self-conscious about and that can be a barrier when meeting new people. That is all part of life though and we all accept each other for who we are. We don't have to be defined by those things and I like to think I'm not defined by cf. There are countless experiences I wouldn't have had without having cf that have made me who I am today and I am more than happy with that, but my life is so much more than cystic fibrosis. There have been some tough times as well. As a cf patient, it can feel like a constant battle at times. When everything seems to go wrong at once, there have been a few times when it's got the better of me, but there has always been people around me to dust me down, pick me up and win those battles.
At 6 months old, it's fair to say, things looked pretty bleak. 3 years and 2 operations later, things probably didn't look much better. Now though, I'm a healthy 24 year old with some great experiences behind me and, I think, I'm now on the verge of something pretty special. Everything I have gone through so far in life has lead me to this year. I have received and continue to receive so much support from family, friends, doctors, nurses that I felt I had to give something back. Everything that everyone has done for me up to now has allowed to me to stay fit and healthy, which is exactly why I set up Fifteen for '15. Fifteen events in 2015 to raise money for the Cystic Fibrosis Trust. Sunday 14th June sees me take on the biggest challenge of my life - the rock 'n' roll marathon. This is just challenge number 5 out of fifteen though...
So, that's my story. It's really one of thanks - to all the people that have helped me along the way, all the hospital staff that kept me going, my mum and dad for taking everything in their stride over the years and encouraging me to be 'normal', my brothers for 'letting me win races' when I was little and supporting me through the years, my two cousins for being like sisters and eveyone else in my family, you've all made such a huge difference to and my friends for never treating me any different to anyone else. Thank you all for the ongoing support, the hospital visits, the weight gaining incentives, the hours of physio, iv injections, absolutely everything!!! Finally, a massive thank you to everyone getting involved this year. I am overwhelmed by the support and willingness of people to give up their time to do all these crazy challenges I've lined up. Next time I have a bright idea, feel free to quash it in the early stages. My story is also becoming one of pride as well. At the end of this year, if we can beat our fundraising target, I'll be quite satisfied that we have all completed something pretty special and I am starting to feel like I have a story to tell.
Sean
www.justgiving.com/15for15
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