Paul Butler was given just weeks to live but the Bitterne resident has transformed himself

Luckily one of his doctors recognised that the ‘mystery’ symptoms he was displaying were cystic fibrosis.

It was a reprieve, but his parents were told not to expect him to live beyond 20.

Throughout his childhood, Paul, who lives with his partner in Bitterne, was given physiotherapy twice a day, a nebuliser three times a day and a cocktail of drugs.

He was hospitalised every time he had a chest infection, which as he had a weak immune system, was frequently.

He accepted that his life would be a short one.

But his attitude and his life changed when he had a daughter, eight years ago.

“As soon as I saw her, I said to myself that I had to be here for her,” says the 35-year-old.

“It was a huge turning point in my life.”

Up to that point, Paul had made some effort to stay healthy, but he realised there was a lot more he could do.

“I didn’t have a death wish or anything – I never smoked, but around 19, 20 was a very difficult age for me,” he says.

“I came back from a holiday in Magaluf and my doctor told me that my lung capacity was down 30 per cent and that if I carried on as I was, in a couple of years, I’d be dead.”

At this point, Paul was still being hospitalised regularly, including because he was coughing up blood and because he had such severe constipation he was on the verge of having a colostomy bag fitted.

But when he was 27, everything changed.

Paul had been told that he would never be able to have children, but through IVF he and his then wife had a daughter, Amelia.

He no longer wanted to feel like he was living on borrowed time – he knew if he wanted to see his little girl grow up, he was going to have to radically overhaul his lifestyle.

He began running to get fit, but was told by doctors that exercising outdoors was no good for him.

“I started going to the gym and never looked back,” he says.

The gym became more than a way to keep fit for Paul. It paved the way to a new career.

Paul went on to become a personal trainer, and has even taken part in a natural bodybuilding competition.

He is still on a cocktail of more than 30 pills a day, and has to use a nebuliser, but he no longer needs daily physiotherapy, as he is able to do the exercises himself that he needs to help clear his lungs.

He hasn’t been hospitalised for more than seven years and doesn’t think about predicted life expectancy for people with cystic fibrosis anymore.

“They have changed it over the years. At first it was 20, then 25,” he says.

“When it was changed to 30, I was already 32, so I thought it showed I was winning the game.

"I don’t think about it like I used to. I just focus on being as healthy as I can.

“At hospital they have to ask me if I would have a lung transplant, if I ever needed it, but they say my lungs are so healthy I will probably never need one.

“I have an ‘MOT’ every year, when they check my lungs, my bone density, everything, and everything is doing really well.”

Paul exercises on a daily basis, fitting it into his routine between clients.

And he keeps his daughter, Amelia, in the forefront of his mind, to help keep him motivated.

He says that for many people, fitness is too much about external appearances, but for him, it’s all about his health.

“Unfortunately, some people just want to look good naked, when it should be about your health,” he says.

“How well I am is always going to be my priority.”

Two years ago Paul took part in a natural body building competition, to prove that someone with cystic fibrosis could take to the stage alongside other competitors, but he felt it placed too much strain on his body and the necessary diet was incompatible with his needs as someone living with cystic fibrosis.

“I did it once because I wanted to show that I could do it with what I have been through,” he says.

He is considering competitive power lifting as, weighing in at 70 kg, he can deadlift three times his own weight.

That is not bad for someone who as a youngster hated PE classes as he couldn’t hope to keep up with his classmates.

Despite the difficulties that Paul has faced, and continues to have ahead of him, he says he wouldn’t choose not to have had cystic fibrosis, as it has got him to where he is in life.

“Being in the position I am now, I am definitely grateful to have had cystic fibrosis,” he says.

“I wouldn’t be living the life I’m living otherwise.

"Because of cystic fibrosis, I made the choice to stay alive.”

FACT FILE

• Cystic fibrosis, also known as CF, is a genetic disease affecting more than 10,000 people in the UK.
• You can’t catch or develop cystic fibrosis, it’s something you’re born with and most cases in this country are now diagnosed soon after birth.
• It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus, making it hard to breathe and digest food.
• It can be treated with physiotherapy to help clear the lungs and infection – but there is no cure. Average life expectancy is around 31 years.
• Cystic Fibrosis Trust – cysticfibrosis.org.uk.
• European Cystic Fibrosis Society - ecfs.eu.