I never thought it possible for most of my life. Slowly I dared to dream, even whisper it… now I can shout it out loud – “I’ve made it to 40!” For me it is a moment to reflect on all that has happened surviving cystic fibrosis (CF)*, while looking boldly ahead to what the rest of my life has to offer.
But during this reflection, I spare a thought for the lives lost to this horrid illness including my CF friends who died before reaching 30 who all deserved to live as long as I have.
In sickness and in sickness
CF is a most complex disorder and because of the 900+ mutations, it varies in its effect on the individual; some versions are incredibly aggressive and others apparently quite mild. (Mine for the record is the pretty severe Delta 508).
Some patients are diagnosed later in life which could be caused by a lack of medical recognition (probably would have had a better quality of life if spotted earlier) and some who show little or no symptoms for many years. Indeed, my Mum met a chap who was diagnosed at 58 following a career in the Parachute Regiment who only had occasional attacks of bronchitis.
Some CF people can get by for a considerable length of time with little or no need for food enzymes or anti-biotics.
At the other end of the scale, there are some who sadly suffer severely from an early age with chest problems, joint pains, rheumatoid arthritis or have early liver complications which require a transplant.
Others are diagnosed with insulin requiring diabetes at an early age. I found that hard enough to accept aged 38, but for small children and teenagers, it must be incredibly difficult for them and their parents.
For such parents of young children and adolescents who read my blog posts, they can quite rightly find it difficult to comprehend how I have lived my life while their child hasn’t had that luck. CF is harsh, relentless and doesn’t take any prisoners – it is a wretched illness!
A large majority of CF sufferers endure a life of considerable suffering and it helps me to believe that God is holding their hands as they depart this world and that they have gone to a better place, free of medication and coughing; a place where they can be spontaneous and run around like gazelles.
To endure is to undergo a hardship without giving in. I use the expression “pushing on” many times a day and it sums up my obdurate attitude to the daily battle with all that CF and diabetes throw at me.
This countdown blog has been a good way for me to share my experiences and coping strategies.
My physical and mental approach has helped me break the shackles of impending doom, to fight harder when all my energy has gone, to be positive when all I wanted was to give in, to take my medication when I want to be carefree, to look to a future rather than an end and to have the courage to keep fighting.
I try to manage the disease rather than let it manage me. All the medication is just something I need to do at certain times of the day, so that I can get on with my life. That way, CF is not defining who I am. People know me as Tim Wotton, the cheeky chap, who just happens to have CF.
Heaven can wait
Since I started the blog in January, I have definitely noticed my new openness about my struggle with CF has been reflected back by everyone and that is empowering and comforting.
I also wanted to increase the awareness around CF and inspire anyone (healthy or those dealing with any long term illness) that even when the odds are stacked against you, there is usually a way to overcome.
Judging by the responses to my blog from the CF community and friends, I am already achieving this and in some cases, offering a rare ray of hope that life expectancy with CF is what you want it to be. I hope my story and words have been life-affirming. Thanks to everyone who has followed this blog and made a comment.
I have decided to keep the blog going but to post less regularly when I’ve got something new to share – “phew” I hear you say!
To still be here is the most precious gift I have on my 40th Birthday which is not something that many 40 year olds would think to acknowledge. Not only am I still alive, but I have a lovely wife and son to share my future life with… to infinity and beyond!!! (You can tell I’m a Dad now!)
Ernest Hemingway wrote the quintessential short story: ‘For sale: baby shoes, never worn.’ Here is my version:
CF, chronic illness. Tim Wotton, 40, pushing on.
READ ALL ABOUT IT – For those that missed it, my story and blog featured in the Guardian G2 Health section in February. Click here to view the article…
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It’s been a pleasure, never a chore…
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website