JF Kennedy once said “It’s better to light a candle than curse the darkness.” Discover how I have learned to lighten up my dark moments…
The Dark Side
The definition of suffering is ‘to be forced to endure something unpleasant’. Over the last 39 years, I’ve had many unpleasant experiences while battling the unyielding symptoms of Cystic Fibrosis (CF)*.
Notably I have been physically and mentally stretched by countless Intravenous (IV) treatments and made myself sick to clear my lungs before playing sport. A particular highlight was the embarrassment of a bag of my IV syringes and needles falling down from a train’s overhead compartment onto startled commuters – “It’s not what you think!” was all I could muster.
However, for most people with CF the need to cough (to help clear secretions) is the most consistent irritation. This does vary for every sufferer as there is not a one size fits all version of CF – in fact there are over 900 variations of the condition.
A cough in time saves nine
Similar to how newborn babies have their own distinctive cry that only their Mums can hear from afar, CF sufferers tend to have their own signature cough. I can be heard by my wife, son, family and close friends before they even see me. If I was being mischievous, I would place a large bet that there are no burglars in this world with CF!
I tend to cough or clear my throat during the course of most days and this is inflamed by exercise but particularly by cold and damp weather. “Cough any harder and you’ll get a gold watch” – if I had a pound for each time I have heard this, whether out and about or playing sport, I would have enough money to buy… a gold watch! 🙂
I can be prone to coughing so hard at times that my head feels like the inside of a church bell when it’s clanging. Though luckily my head is still in place at the end of it!
I have had the odd night where I wake up coughing so hard that I’m scared that I’ll choke to death and I keep myself awake scared beyond belief that if I fall asleep, I won’t wake up in the morning. I’m dramatically on Elm Street and CF is my very own Freddy Krueger!
When I wake up in the morning, there is a palpable sense of relief and euphoria that I am still on God’s sweet earth.
But after a bad night or any health set back, I feel small, insignificant and my self-esteem is low. I want to be invisible. I feel like Marty Mcfly’s disintegrating photo from the ‘Back to the Future’ film. How do I fight back from this? What’s there to be excited about? How do I conceal these grim feelings?
Don’t worry, be happy
My main coping mechanism to cover up what’s going on inside my body following any dark moments or difficult morning treatments, is to keep my internal flame lit, which helps to ‘switch off’ the worries in my head. Light, humour and laughter are my armour to protect me from the darkness of CF. Sometimes only a smile can brighten up a dark day.
I try very hard to have a happy disposition with everyone I meet and in everything I do to counter the seriousness of my ‘bigger life picture’.
I work extremely hard at smiling, making myself and others laugh (often with cheesy jokes) and being ‘happy-go lucky’ as that seems to manifest better health inside me. I’ll go to the extreme of trying to be the happiest person in the room or office. It also means that I don’t dwell on the dark moments for too long.
I am a cheeky chap but there is method to my madness. Life has always felt too short and harsh to take it overly seriously. Dealing with CF is the serious part of my life, so the rest of it needs to be as light-hearted as possible.
Sunshine on a rainy day
This approach has to come from within and I have to work hard to turn off the mental demons in my head. I start thinking happy thoughts and being happy. I’m convinced that when you possess light within, it is seen externally – people see my light and humour; they see an upbeat seemingly healthy person, not an ill or downbeat person. This has a positive effect on me and the people I come into contact with.
Having a sunny nature has never felt like too much of an act as it comes fairly naturally for me and I feel healthier for being happy and positive rather than being downcast and negative. Allegedly, we use more muscles to frown than we do to smile!
This doesn’t just apply to work situations, but to visits to hospitals, surgeries and chemists. Especially for these mundane health related appointments, I cast aside all negativity and try to be nice, smile, crack jokes – anything that makes the experience more palatable.
When I’m down, I firmly believe that laughter is the best medicine and often joke with my wife, Katie, that “at least I’ve got my health!”
I also watch very funny films. The power of laughter and joy helps dissolve disease in my body. It removes the physiological stress that builds up from the burden of a relentless illness. Those that know me well will remember my passion for ‘Carry On’ films and Sid James’s infectious laugh!
We all walk in the dark to different degrees and have our own cross to bear; so finding ways to lighten the burden is paramount. For me, humour and happiness are my guiding lights to deal with these dark moments.
‘Though my soul may set in darkness,
It will rise in perfect light.’ (Sarah Williams)
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Look out for my next post as I countdown to my 40 year milestone…
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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