I'm 23-years-old; an age, if I went by my prognosis, which I should never have reached. I have a life-limiting condition. Yet, my life is pretty amazing. However, if I told you the reason my life is so great is because of my condition, would you believe it?
I was born with health problems that went undiagnosed and unconnected despite seeing many professionals over the years. I deteriorated throughout childhood, living an active life despite my struggles, and hiding what was going on as best I could. When I got to the age of nine things started to deteriorate more quickly, from age 11 I had physiotherapy and despite being active riding horses and working at the stables, my deterioration continued until my body gave up in January 2008. I became disabled. My condition continued progressing, my muscles were wasting away, my internal organs were failing one by one, I was needing ever more invasive interventions until 2011 when we received the news that my condition would drastically shorten my lifespan. I received the news in 2012 that I wasn't expected to live another five years.
Being told your condition is life-limiting was devastating, but the funny thing is I refused to believe it. In my mind's eye, I never saw myself having a short life. However given the diagnosis I needed to start my end of life planning. I needed to put things in order and my advance care plan completed to ensure my wishes would be respected and followed and I was prepared for my end of life care and my death. That was first completed in 2011. It was even more important when we found out in 2012 that my prognosis was expected to be less than five years.
However, it was doing that end of life planning in 2011 that led to me having a whole new life. An exciting, purposeful, enjoyable life, in spite of my deteriorating condition and all its complications and the limits these impose on my life. I would start to truly 'live' again and have a life to be proud of.
As my mum, my hospice nurse and I sat going through the plan and documenting my wishes, I suddenly blurted out that I was scared I'd die and be forgotten, that nothing would be different or better because of me and my life wouldn't have meant anything. It even surprised me, what I'd said, as I'd not consciously ever really thought about that. That sudden exclamation would change my life.
Two years on from that conversation, my nurse heard that a children's palliative care charity were looking for a young person to speak at their reception in the House of Commons. My nurse put me forwards for it, and when asked, I accepted the role. I started writing my speech in earnest and practising and the day came up thick and fast. On the 19th November 2013, it was the day that would change my life. After moving and mingling with MPs, eminent professionals and charity representatives, it was my turn to speak. I drove up onto the stage, turned to face the one hundred or so people in the room and I delivered my speech. I said my final sentence and then looked up from my papers to see the room erupt in applause. I'd done it. What an achievement it was.
Since that day, I've achieved an awful lot. I've written blogs and articles for various places; written forewords to three guidances and a book; I've delivered many speeches at events from national conferences to meetings to informal groups; I've appeared on television and radio and in the media; I'm project advisor on a research project; I manage the website and social media for one charity; and more. I hold positions within six charities and one alliance, and work with many other charities and organisations on a one-off of intermittent basis. I've got many plans for the future too and I have a successful blog. In the 2016 New Years Honours I was awarded an MBE for services to young people with disabilities, aged only 22. What an achievement; it still doesn't feel real. I was awarded the MBE by Prince Charles at Buckingham Palace in June 2016. My duration of work may not be long, but the impact of my work is what led to my MBE. I keep very busy, working every day and doing all I can to make a difference. My voice is the one thing I can use completely independent of anyone; so I use my voice to be a voice for others like me. A voice for those who cannot speak for themselves, or who do not have the opportunity to speak up on a national or even international scale. I use my abilities and experiences constructively to benefit others.
This is all despite a life-limiting, degenerative condition. Despite being hooked up to intravenous drips at least 21 hours a day, despite having a drainage tube and two stoma bags. Despite surgeries, twelve battles with sepsis, despite hospital stays, despite fighting for my life. Despite knowing that my time on earth will be far shorter than it should. Despite knowing that I've outlived the prognosis I was given.
In the process of doing this work, I've gained a purpose, a new life and its led me to truly live. I am no longer merely existing, I now have a joyful, exciting, jam-packed life. I still have a degenerative and life-limiting condition, I'm continuously getting worse and losing abilities, my condition becomes more fragile and harder to manage, I require more intervention and I have to deal with the almost continuous cycle of grief with each new problem, complication and deterioration, but I have a life that is worth living. A life I'm proud of. Had I not been poorly, I'd have recently qualified as a junior doctor, which has been a cruel blow, but I am regularly told that I've likely done more with my life and made a greater contribution to society as a patient leader and ambassador than I ever would have as a doctor. I like to think that is true.
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