What is Cystic Fibrosis? How it affects me and why singing helps.

Can someone explain?

I think a good place to start would be to explain what Cystic Fibrosis is for those who may not be familiar with the disease and what it means for the individuals dealing with it on a day-to-day basis. To give you a concise definition I have included an explanation and short video below which I have taken from the CF Trust website (website link below for more info)I really feel as though the video starring Charles Michael Duke hits the nail on the head for those wanting to know more:

What is cystic fibrosis?

CF Trust – “Cystic fibrosis (CF) is a genetic condition affecting more than 10,400 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 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.”

https://www.cysticfibrosis.org.uk/

 

My experience

Now you have a little more insight in to the world of Cystic Fibrosis, it is time for you to have a sneak peek in to my life and how it affects me personally. I consider myself to have a milder form of CF for the main reason that my health decline has been a lot slower than what is typical. I managed to get to 22 without having any serious issues and I keep relatively well. Nonetheless I still have to put in a lot of effort in to staying healthy. I have to do two sessions of physiotherapy a day; more when I have an infection which involves a number of breathing exercises to help get rid of the excessive mucus that builds up in my lungs. Alongside physio I have to do nebulized treatments which include antibiotics. I currently do 5 of these a day. Separate from my lung issues I have what is called pancreatic insufficiency which a high percentage of people with CF have. This affects the body’s ability to absorb vitamins and nutrients and to combat this I have to take Creon (pancreatic enzymes). I have to take anywhere between 3-15 of these tablets with everything I eat. I also supplement a number of vitamins to make up for what I don’t get from my food.

I must admit I have never been brilliant at being 100% compliant with meds. Before my diagnosis I was the kind of person who would forget a to take a daily vitamin tablet; so now there is a lot more to remember and it is no easy feat! I know many fellow Cfers (what we call eachother in the online CF community) struggle to keep on top of treatment and there is a massive guilt factor involved  as you can feel like it’s your fault you’re in the hospital and it might have been prevented if you had just done better. I try to go easy on myself and tell myself what I would tell any other Cfer, which is you are only human, it’s impossible to be perfect and to just keeping trying as best you can, that is all you can really ask of yourself.

(BELOW – Some of my daily meds)

MEDS.jpg

Singing

Personally I love to use singing as a form of physiotherapy as the breathing and control used in singing is effectively the same, and I would much rather belt out some tunes than sit down to do my ‘CF therapy’. It allows me to turn something quite negative in to a positive and I can focus on how good the music makes me feel rather than feeling resentful at having to do treatment everyday for the rest of my life. Singing involves a heck of a lot of breath, strength and control which you would assume would rule out singing for someone with Cystic Fibrosis. Like me and many others we are living proof that it is not the case. I am confident that me singing is a big part of why I stay well. The more I sing and do it on a regular basis the stronger my lungs are. When I was singing everyday, rehearsing every weekend my lung function was consistently in the high 90s, which is amazing. I always notice a big drop when not singing so not only do I love singing, it is helping to keep me out of the hospital. I can’t really ask for a bigger motive than that to keep going and also to encourage others to do the same.

Photo credit: Linda Blacker
Me performing my solo in the musical ‘The Dreamers’emily dreamers

 

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