Cystic fibrosis (CF) has been a part of my life since birth. I was diagnosed with CF at eight hours old after having life-changing surgery for meconium ileus. It left me with a scar across my stomach and some of my intestine missing.
Living with cystic fibrosis
I am more prone to infections due to my immune system being a lot weaker than a normal child.
To prevent me from getting seriously ill I have to take a cocktail of medication and nebulisers to help me get through every day.
During my childhood, frequent trips to hospital were made. Some trips were just check ups every six to eight weeks. But I would have to spend weeks on the ward to fight infections that I couldn’t get rid of at home.
Growing up with cystic fibrosis
I was very lucky to have a supportive mum who made sure I was always eating correctly. My digestive system is damaged from cystic fibrosis and it’s difficult to absorb all the right nutrients.
Along with making sure I was eating enough, she also got me into swimming.
Since then swimming has stuck and I progressed into competitive swimming as I got older.
My teenage years
In my teenage years and early adulthood I noticed my CF more.
It did prevent me now and again from being able to do the same as others my age.
As I had to put my health first, I couldn’t afford to miss out on medication or physio. I had to make sure that was all done before I could do schoolwork, social events or spending time with friends.
This did impact me mentally because I just wanted to be like everyone else and not have to worry about my health.
Growing up I was a determined young girl who wasn’t ready to compromise due to my condition. I would always put 110 per cent into my school or college work despite having to go through a lengthy physio routine before the day started.
Cystic fibrosis day to day
Every day of my life I have always tried to live as though I rule CF and CF doesn’t rule me. If I let my CF rule my mind and daily life then it wouldn’t be a good one.
Don’t get me wrong I do have my up days and down days. The nature of cystic fibrosis that every day is different. You can’t really predict what’s going to happen or what you are going to feel like.
The past 18 months have been the best so far in terms of living with CF. Since turning 20, I have really looked after myself and got into fitness a hell of a lot more.
Alongside swimming, I joined a strength and conditioning gym. We do a lot of weight training and cross fit-style workouts which works my lungs.
Since doing this, I have managed to increase my lung function, which is so brilliant as it can be difficult to do so with cystic fibrosis . But not only that, I have felt better in myself, which helps massively getting through every day with CF.
Because of this change in mentality, I have managed to get on top of my CF and keep it in control.
My main goal is to stay out of hospital and be well enough to fight infections without the need of intensive drugs through IV lines.
New fitness regime
I enrolled on the transformation class at Southern Legion gym to get a different type of physio for my CF.
An added bonus was the strength training with weights to help with my mobility difficulties.
Over the 12 weeks on the course, I noticed a massive change in my mental health. Also, my lung function rose by seven per cent, which for someone with CF is very hard to do!
It gave me an added determination to carry on, leading to me joining the Southern Legion gym fully. The classes at the gym are so beneficial for not only me, but for other CF warriors. We can struggle to maintain muscle definition and weight due to the nature of the condition.
Not only are there health benefits for me going to gym, but also the friends I made on the course is a big bonus. Some days going to the gym is mentally difficult, but having a good support network around me helps so much.
It’s been a real eye opener and I’m so happy I made the decision to take part all those months ago.
My advice
My advice to others living with cystic fibrosis is to get into sport or take part in exercise.
It not only helps with physio it also helps majorly with mental health. We can’t dwell on it too much, we have to fight and be CF warriors.
And remember that you rule CF don’t let CF rule you 💪🏼 💛
What is cystic fibrosis?
Cystic fibrosis (CF) is a genetic condition affecting more than 10,500 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.
The Cystic Fibrosis Trust says: “The gene affected by CF controls the movement of salt and water in and out of cells.
“People with cystic fibrosis experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.”
