Awareness of my health condition cystic fibrosis (CF)* is improving, but very few people really appreciate how it feels to have chronic lung function. Spare a minute to breathe with me…
The intention of this blog and my published book ‘How have I cheated death?’ was to offer hope and survival lessons to the CF community but also to increase the understanding of the general public about the illness.
I have noticed a familiar trend during my recent media exposure (BBC Blog, BBC Radio 4 interview, Guardian and Express newspaper articles) and especially at corporate speaking events.
During my presentation introduction, I always ask the audience to put their hands up if they’ve heard of CF; whereby almost all respond. (25 years ago, less than half would have raised their hand). I then ask them to keep their hand up if they really understand how serious the condition is or have a personal connection with it. Only 5% keep their hands up…
The non-CF community who have been introduced to my story, whether it be media producers behind my array of publicity or the general public who have read my book already, tend to be flabbergasted by two main facets of the condition:
1. Just how life-threatening it is and that it kills people early
2. How much treatment has to be taken every day to stay alive with no remission period
This is not a surprise to me and is indicative of the awareness versus understanding debacle with this illness.
Obviously it is very difficult to experience the full range of problems encountered by people living with CF, like chronic shortness of breath, constant coughing and debilitating tiredness. Breathing is not actually straightforward for most people with CF as the build-up of mucus in the lungs means that less oxygen is available, which causes problems with breathing normally.
Put yourself in my place
You’ll remember the recent ice-bucket challenge on Facebook that went viral this summer to help people, even for a short while, feel numb with cold to represent how it might feel for someone struck down my ALS (aka Motor Neurone Disease).
The majority of humans take for granted the simple act of drawing a breath, which they manage so successfully and with little or no effort. But for CFers when struck down by lung infection, this can be the ultimate test each day, and one which can inhibit us performing the most simple tasks like walking or going up a flight of stairs.
There’s a way anyone can now feel what it’s like to breathe like a CFer.
By breathing through a narrow straw, you can get some sense of what it feels like with reduced lung function – during intense moments when breathing is a struggle or on the back of a heavy coughing fit.
Try this breathing exercise:
• Take a narrow drinking straw and put it in your mouth (not the wide, flexible kind).
• Seal your lips around it
• Pinch your nose or use a nose clip
• Breathe in and out for 30 – 60 seconds
• Notice how much harder you have to work to draw breath?
Now imagine having to cope with that feeling when you are climbing the stairs, running for a bus or in the case of a child, just trying to keep up with your friends while you play.
To add some musical accompaniment to this breathing exercise, a wonderful song ‘Breathe with Me’ has been written by TWF, featuring the stunning AnnJo (see below), with these poignant lyrics:
Breathe with me
And you will see how hard it is
To live your life
When breathing is as hard as this
Breathe with me
And you will see just what it takes
To do the things
You take for granted everyday
The lyrics of the song along with breathing exercise give people the chance to momentarily feel how restricted our lungs can be and for one minute know the full spectrum of emotion we CFers go through as we fight for our very breath during a coughing fit or when our lungs are struggling.
Join the Strawfie Challenge – By nominating friends/clubs/companies to take part too, you will help to spread understanding about CF. You can donate as little as £1.00 per strawfie (picture of you doing the breathing exercise) by texting BWCF64 £(amount) to 70070.
So, tell a friend or friends about this blog post, share the ‘Breathe with Me’ song and the breathing exercise. Add this exercise into your CF fundraising events.
Use your healthy breath to breathe life into the lungs of CFers around the world. Your one minute versus my 43 year lifetime sentence. I would take the former option in a heartbeat. In this season of goodwill to others, please take some time to breathe with and like me.
Thanks and festive wishes.
I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
Tim Wotton (CF author)
View more information at the Breathe with Me website http://www.breathewithme.info/index.htm
TWF featuring annaJo – ‘Breathe with me’
The UK CF Trust has just released this thought-provoking film about the importance of breathing to CFers… ‘The Breathe Before’
My CF memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early in 2015!
My BBC Blog Carpe Diem
My appearance on BBC Radio 4 Saturday Live show (main interview at the 1 hour 10 min mark)
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.