Grin and bear it

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)

Please make any comment in the blog Comment section. If you haven’t done so already:

  • Do subscribe to this blog, to receive my on-going posts, by placing your email address in the Subscription box provided (if you already have a wordpress account you will not need to provide an email address but will need to click on the subscribe button)
  • Forward the blog link to your friends and family who you feel might appreciate this content and encourage them to do the same

Look out for my next post as I countdown to my 40 year milestone…

Regards

Tim

* 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

http://www.cftrust.org.uk/

Advertisements

About Tim Wotton

I live with my lovely wife (Katie) and spirited ten-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
This entry was posted in Tim Wotton Countdown and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

18 Responses to Grin and bear it

  1. Ann Hirst says:

    Tim, your endless capacity to find the humour in any situation has been and always will be an inspiration. I’m loving these posts so much. You get your message across so eloquently that in just three (relatively) short passages you’ve helped me understand so much more about what you’ve been going through and I realise how little I knew beforehand. Suffice to say, you’re pretty much one of the coolest blokes I know.
    Ann x

  2. Juliet Chevalier-Watts says:

    An inspiring read…

  3. Stewart Jones says:

    Amazing advice for anyone! U can’t choose your health but you can choose how you feel and affect your own world and those lives around you…. Your need for a positive solution has had such a great effect on so many…. We even like most of the jokes! Choose to lead and not be led! That sets you apart as the special person you are.

  4. Anya says:

    thanks for sharing this with us … I already think you’re pretty fantastic and I’m so happy you met Katie – and created Felix. It’s true that most of us don’t know much about CF so it’s really wonderful that you’ve decided to educate us a little about your own personal battle. I know it must be hard sometimes to be upbeat, but you have a great sense of humour and are one of the most cheerful people I know. I’m sure your experiences would help those close to other CF sufferers to understand the impact on your everyday life. love to you all.

  5. Lizzie Clutterbuck says:

    Although I haven’t seen you for almost 20 years I can still hear your cough &, more importantly, hear your laugh. Fortunately, I can’t smell you pea-soupers! Much love xxx

  6. Liz Langley says:

    You truly are an inspirational person.

  7. lesley porter says:

    Tim,
    Thankyou so much for your thoughts and writings. Our littlest has CF, she is 2 1/2 and we try to make every day fun. Your PMA is amazing and inspires us to keep happy too; I only hope we can foster this attitude in our girly. We have a quote in our downstairs loo that says ‘Enjoy life, this is not a rehearsal’ and you embody that feeling. Keep smiling, we are right behind you. xxx

    • Tim Wotton says:

      Dear Lesley,
      Thanks for your comment and kind sentiment. The quote in the downstairs loo is apt. Life with CF is beautiful at times as you often have to get through so much each day, that you appreciate all the simple pleasures more than most.
      Some people go through a whole life-time and not know what I know and feel what I feel. Don’t get me wrong, I’d hand CF back in a second if I could, but until that is made possible, I will make the most of what I have.

      God Bless you and your family
      Tim

  8. Chris Wotton says:

    I’m Tim’s older ‘healthier’ brother. I lived day to day with Tim for over 18 years before I left home. There are a couple of memories I’d like to share with you all…
    All involved the early years of him coping admirably with the CF disease. Fortunately through all the research and improvements in treating the disease things have got better for CF sufferers.
    First one was the number of tablets he had to take before each meal. Quite often double figures. But it wasn’t the number but the size of these things. They were like horse pills – huge and almost impossible to swallow down with out damaging your throat. They took some mastering but eventually Tim would go through 12 tablets three or four at a time in seconds! Unbelievable!

    The second memory was the powder that he had to put on his food to help him digest it once it was the food was in his stomach. can you imagine having to put loads of white powder on your food (which made it taste disgusting) as well as seeing it disolve the food on his plate like some kind of acid. Tim just got on with it, knew he had to do this to digest it properly and never compalined.

    The third recollection (for today) is the physiotherapy and the time it took up. An inconvienince at best and tiresome boredom at worst – this treatment twice a day for 20 plus minutes would drive anyone to ‘kicking off’ and complaining. Again, the majority of the time he just took it in his stride and got on with it knowing it was part and parcel of what he had to do to stay heathly.
    Tim’s a suvivor!

  9. Cecileah says:

    Fristy, Thanks Tim for another great post.
    Also Thanks Chris, it is great to hear from a sibling.
    My daughter 4 yro wcf (our eldest) has a younger brother and is due to have another little brother in a few weeks time. Both her siblings do not have CF.
    I know she will inspire them througout life and that they will watch out for her.
    Take care guys!

  10. Tim Wotton says:

    I suddenly realised that I have never made a comment on your blog! I blame my little shadow, Felix!
    I am immensely proud of you for doing the blog and for the way you live your life. In 10 years I have hardly heard you complain about CF (or anything else for that matter!). I do all the screaming and shouting in our house!

    We’ve been through so much together, mostly good, but some very dark days after Felix was born. That’s a story for another time. IVF was no picnic either was it?! ! To everyone out there who has to do IVF to have a baby, prepare yourselves for a rollercoaster ride, but never give up. We didn’t and now we have a wonderful little boy, who pushes us to our limits but we love him ‘to the moon and back.’

    Along with the occasional tears, we have had a few laughs along the way of your CF journey! Like the time I was pregnant with Felix and throwing up and we had to go to Frimley for your IV line to be put in. It took forever, so awful for you. We got stuck in traffic on the way home and had to stop at a petrol station for me to buy and eat a loaf of bread!

    Remember the times our gorgeous Ocsar Boy would come and curl up on your physio table, in the crook of your knees, whilst we were doing physio? Oh how we miss that boy.

    There can’t be many wives who bring their stethoscope home from work to listen to their husband’s lungs?!

    And, oh how we laughed when you sat on one side of the bed injecting IV drugs and I sat on the other side injecting IVF drugs!!

    We do remember our marriage vows every now and then. Our version makes us laugh! ‘For better or worse – worse, most of the time. For richer or poorer – well it’s poorer isn’t it?! In sickness and in health – well, we know the answer to that one for both of us!’

    Now, Felix is in on the act! When he hears you cough he says ‘I’ll make you better daddy,’ more heartbreaking than amusing I guess.
    Your cough is very handy when I lose you in a shopping mall or supermarket (usually in the sweets section!)!

    You’ve got to laugh havn’t you? I don’t know how you do it. Such strength of character that I havn’t got, but I think has passed on to Felix. You are an inspiration and everyone loves you so much.

    What would I do without you?

    Love, Katie xx

  11. Tim Wotton says:

    Katie Wotton comment: I can’t log in as me so my comment looks like it’s come from Tim himself!

  12. Maggs Mcg says:

    Thank you so much for that Grin & Bear it. My grand daughter Shelby is 10 and has CF. She is the most cheerful, happy, matter of fact little girl I have ever met, (except when she is on steroids) I think its a compensation for everything she has to go through. She seems to know when mum and I are holding back the tears when she is going through another hard time with treatment (and the side effects), and instinctively comes up with another funny line to make us and all the medical staff laugh. Last time her consultant suggested putting her back on steroids she looked him in the eye and said “you know I hate you don’t you” and grinned. Your story is something I will keep in mind for when she is a little older. It is certainly insperational.

  13. Another great post Tim which I’m sure many with CF will identify with.

  14. Langers says:

    LOVE IT LOVE IT! I can hear your laugh, cheesy jokes (and cough!) all the way from Upside Down Land!
    K xx

  15. Olivia says:

    Tim, I read some of your posts to my hubby last weekend. He likes your outlook. Like you, he is an incurable optimist. And indeed, when we’re out shopping I can locate him by his cough. He does it a lot more in winter, poor thing. I tell him we should move to the jungle.

  16. Alix Cass says:

    Tim these posts are inspiring and Katie – your beautiful message brought a tear to my eye.

    XX

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s