"I'm hoping to live a very long and fulfilled life, something that as a youngster, I didn't think was possible”: Simon shares his story

My CF journey 

I was diagnosed with CF when I was 18 months old. Back in the 80s, the average age of life expectancy of people born with CF was around 18 years, so my parents were very concerned at the time about what kind of life I would lead.  

As a baby and young child, I was malnourished (due to the late diagnosis), skinny and fragile, but due to the excellent care and support from my parents and my CF team at Great Ormond Street Hospital, I was able to lead a good childhood.  

Overall, I led a relatively happy and normal childhood, partly due to having a strict medical routine and keeping on top of my treatments. 

I did spend a lot of time off sick from school, but that was mainly down to my chronic headaches and low motivation (what I now see as early signs of depression) rather than because of my CF. 

I was overweight and chubby in my mid-teens due to the steroid tablets I was taking for my sinus issues, but bit by bit, I eventually got fitter and lost some of the weight. It started from walking my girlfriend home after school to gradually getting on my bike and cycling a few miles. 

Turning to exercise 

In my twenties, I ran my first London Marathon in 3 hours 50 minutes. Since then, I have gone on to run five more marathons, two in London, one in Luton, one in Dublin, and another in New York, with a personal best of 3 hours 40 minutes, which I am quite proud of.  

I have also climbed Ben Nevis four times, run countless other races, cycled to Germany from my hometown in Bedfordshire and cycled over 1,000 miles from John O' Groats to Lands End twice.  

Keeping fit and focused on my training and treatment regime has kept me healthy while also proving to myself and others that living with CF does not mean that my life has to be limited. CF has not defined me. 

I hope to do my fourth London Marathon next year, but training is tough! I haven't done a marathon in 11 years, so it's tough getting back into it. But now I am on Kaftrio, and in my 40s, it feels like the time to do another one. I want to put my heart and soul into raising money for Cystic Fibrosis Trust, show myself and others what's possible for someone with CF, and hopefully inspire people along the way. 

The impact of CF on daily life 

Obviously, I would save a lot of time day to day if I didn't have to do my medication and treatment, but seeing as I've had to do it for as long as I can remember, I can't really call it a burden because I don't know any different. I guess it's a bit like asking someone how they feel about eating breakfast, brushing their teeth, etc. in the morning; you just get on with it.  

I do have to take time off from work to attend hospital appointments, but I am lucky that I have an understanding employer. I also occasionally get fatigued, and this can become quite frustrating. However, I have learned to schedule rest times to help me carry on during the week.  

For example, over the years, I have found that if I don't rest and take a nap on Sunday afternoons, I become more tired (and grumpy!) during the week. I sometimes have an hour or two of rest after work as well when I can. 

Going into hospital or having home treatment for IVs is a different story, as it eats up more time and is generally more intense. I always feel very anxious about this beforehand, but after a couple of days, I usually start to feel more positive about it and see it as a chance to reset and focus on what I want to do next in my life. 

The biggest challenge of having CF 

The biggest challenge for me is the constant focus needed to look after and monitor my physical and mental health. It worries me that if I don't keep up with my treatment and exercise, I will become unwell. But I'm only human, and difficulties do come along, and sometimes, it can be hard to take care of myself as well as I would like. 

Trying to maintain a healthy balance can be a big challenge, but I am trying to learn to be realistic with myself. It's okay for me to cancel plans or take time off when I'm not well enough to go out with friends or go to work instead of trying to push myself. 

Starting Kaftrio 

Starting Kaftrio three years ago was a breath of fresh air (literally!). It made me realise just how much my health had declined up to that point. Starting Kaftrio felt like I had gone back to my 20s and 30s again. Suddenly, I no longer had to stop and cough when running or walking; I generally felt more awake and less fatigued. 

Starting counselling 

Counselling has helped me look back over the past 30+ years and connect to some of the thoughts, feelings and behaviours I have today. As a child of the 80s, the outlook for people with CF was not as positive as it is today, but therapy has helped me to feel grateful that I made it through all those years (including all the ups and downs) and be thankful, rather than feel guilt, that I survived when others were not so fortunate. 

Advice to other people living with CF 

Don't compare yourself to others; instead, try to focus on your own goals and be realistic with yourself on how you can deal with your CF as best as possible so you can achieve your dreams. Roll with the punches; there will always be low times, both mentally and physically in life, but there will also be good times. So, if you are going through a bad patch, remember that it won't last forever, and you will get through it. Most importantly, be kind to yourself. 

Hopes for the future 

Cystic Fibrosis Trust is striving for a better future for myself and other people living with CF, whether this is through research for better treatment and an eventual cure or improving the lives of those in the here and now living with CF. 

More research into CF is so important to provide better treatment for everyone living with CF and to give hope for a better future for the younger generation and newborns diagnosed with CF. Research is the key to improving lives and giving hope to those dealing with CF every day, including friends and family. 

Being a 41-year-old man living with cystic fibrosis, I am now able to look back over my lifetime and marvel at the progress made and the increased awareness of the condition.  

I'm hoping to live a very long and fulfilled life, something that, as a youngster, I didn't think was possible. And I hope to be fit and healthy when I'm a little old man! 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 11, 148 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Your donations help us fund vital research. Donate today to help everyone with CF live a life unlimited. 

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