Not alone

It’s not just the sufferer who’s affected by the diagnosis of a life-threatening illness, like cystic fibrosis (CF)*. Close family and friends have a crucial role to play as well…

During the recent Jubilee holiday in the UK, I met up with my family in Southampton – my mum, dad and both of my brothers were all in attendance.

As I’ve mentioned in an early post, I never underestimate the importance of family support to my lasting health and well-being. Having said that, my experience has been that there’s a tricky balance to be found between being shown love and the right level of care and being overly smothered and mollycoddled. Over time and through trial and error, my parents got this correct balance while engraining in me the bespoke health risks of CF so that they became second nature to me and I could be independent.

I was empowered by them to take ownership of my treatment and they made me believe that most things in life were possible. I felt that CF wasn’t the end but the start of my life; that my stay on this planet wasn’t going to be about merely existing with CF but it could be about living as full a life as possible and making a difference to others.

There’s more to family support than just my parents. Siblings, extended family and close friends also play their part. My brothers Chris and Jez are very much enrolled into the equation and have been with me all the way on this rollercoaster journey.

I smile because they are my brothers. I laugh because there’s nothing they can do about it.

Jez is my twin – two miracles instead of one – and is amazingly a non-carrier of the CF gene. He has been a very consistent thread throughout my life, a mutual fan of many teen comedy films and we have the same pre-University social buddies. He manages the subtle trick of engaging me about my health when needed but without being over-bearing. He’s been on hand when I’ve been at some very low- ebbs, not least when I read the news nine years ago that Alice Martineau, the talented young English singer, had sadly succumbed to CF.

Chris, my elder brother, is a carrier of the CF gene. He hates my suffering and I think he keeps a lot of his internal angst to himself but it comes out in little comments. “You poor bugger!” he’ll say when he hears me coughing heavily on the hockey pitch. We have a solid bond through playing hockey (for and against each other) and through social and work environments. Chris did rather add to my woes for a while when I was a toddler by pushing me down the stairs and breaking my leg. As you can expect, I’ve got over this now and don’t bear any lasting grudge 🙂

Jez and Chris’s feelings about my condition might include a mix of guilt (that it was me with the illness and not them), helplessness, sadness, worry and frustration about my daily suffering and survival regime. After all, this isn’t just short-term sympathy for a cold or an injury – this covers over 40 years – a lifetime of being around an ill and struggling sibling. I can only imagine that this has a discernible effect on the close family and friends of anyone who suffers.

I’m sure they have been involved in hundreds of little conversations about my health that I would never be privy to. Indeed, I’ve noticed over the years that some people tend to ask my parents, brothers and wife how my health is rather than ask me directly.

I imagine that my brothers have faced up to the difficulty of explaining my CF to friends and colleagues and being faced with the pretty standard barrier of CF unfamiliarity – “cystic what?”

How would I feel if it was one of my siblings who had CF and not me? Based on recent evidence, I’m not so good being the carer or seeing loved ones suffer. Maybe my make-up and coping mechanisms are better suited to being the sufferer rather than the carer?

I feel that all my close family and friends have CF by association with me – seeing my trials, tribulations, anger and frustration; witnessing my pain, medication and intravenous (IV) treatments and hearing close up my barbaric coughing.

My brothers have always made the effort to visit me during each of my 60 horrendous IV sessions; buying me little gifts, usually jelly babies. Now that I’m a diabetic, I even share some of them around!

They tried to intervene during my twenties when I was on a path of social self-destruction; but for the most part they would have had to hold their counsel and let me get on with it. It was a case of buying me another rum and coke rather than ask me to stop!

Typical of brothers, we played a lot of different sports inside and outside of the house, breaking each other as well as the interior and garden. Importantly they treated me no differently and no quarter was ever given nor taken which is exactly how I would have wanted it. Without realising it, they made me feel one of them – healthy, normal and not afflicted.

On most summer holidays, us brothers would find some grassland or wet hard sand and play hockey with our dad who taught us the ‘Wotton Wobble’ hockey skill – his legacy to us. It’s worth noting this is not something that happens after a night of too many drinks!

They must be proud of all I’ve achieved, not least to still be alive at 41, when they would have been gearing themselves up for my early demise for the majority of our time together. I doubt they take my longevity for granted. At chronic times, they would have hoped for the best but feared the worst.

For the last five years, they have been loving and caring uncles to my son and I can see elements of Felix in both of them. They appreciate the extra motivation being a dad myself now gives me in keeping on top of my CF and diabetes.

I’ve already got Chris in mind to coach Felix hockey and basketball and Jez to teach him football and they can both take him out on memorable day trips.

Close family, friends and my wife have all added something to my survival mix – a complete dynamic of care and support – all showing their bespoke and instinctive acts of love. I strongly believe how a family and friends pull together is vital in determining the likely outcome for the sufferer of a long-term health condition.

CF is an immense burden – too much at times for the sufferer to handle single-handily. But this burden can be shared and alleviated somewhat by one’s close family and friends coming together – in the right way and at the right times.

CF is and always will be part of my DNA. It’s me who has to relentlessly knuckle down to do my daily medication, physiotherapy and nebulisers every day… but I’m Definitely Not Alone (DNA).

This post is dedicated to Paul Harvey, a fellow hockey player with CF, who is recovering after a double lung transplant. All the best to you, your family and friends who hold you so dear…

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 if you have not already done so.

Yours cup half full.

Tim

Tim Wotton

* 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/

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About Tim Wotton

I live with my lovely wife (Katie) and spirited nine-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
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10 Responses to Not alone

  1. Stewart says:

    It says so much about all 3 of your characters and those of your parents to install such humility and genuine strength to all 3 of their boys! All 3 to be immensely proud of and a big pat on the back to Mr and Mrs W for an amazing job all round…. especially the ‘Wobble’ what a legacy! 🙂

    • Tim Wotton says:

      Thanks as ever for your kind comments Stewart. You’re well placed to remember the dynamic between my brothers and me and our family generally.

      All the very best
      Tim

  2. sue palmer says:

    Hi Tim, what a wonderful story, I too have cystic fibrosis and have recently gone through a bad patch, my husband and family and friends offer me amazing support, I too go through dark times, and question myself why, but learning to live with it has been my hardest achievement if u can call it that, and making the most of everything and ever moment, and just generally having fun.
    Keep us informed and stay well
    Sue x

    • Tim Wotton says:

      Dear Sue, Thanks for taking time to comment and I’m so glad that my blog resonated so well with you. Living with CF is an every day acheivement that we should never take for granted in the same way that those fortunate enough to be healthy should never take for granted their good health.

      Keep well and all the best to you and your husband/family
      Tim

  3. Ruth livett says:

    Inspiring! Have two children with cf age 10 and 9 xx

    • Tim Wotton says:

      Dear Ruth, Two children with CF – wow – I have to take my hat off to you. I’m touched that my words made an impression on you. I’m sure your fortitude will make a big difference to how your two go and live their lives!

      God Bless
      Tim

  4. Steve Searle says:

    Great article and a fantastically inspiring person. My niece is unfortunately a sufferer, but we take heart from the scientific progress being made and such accounts. The CF Trust are a fabulous organisation. You might want to look at this if you’re interested in supporting them: http://uk.virginmoneygiving.com/SteveSearleSahara

    • Tim Wotton says:

      Hi Steve,
      Thanks for your kind comments and do give my best to dear Angela. Thanks also for sharing the link – you’ve raised so much already and there’s time left to raise even more. I’m sure that when the going gets tough out in the Sahara, it will be thoughts of your niece that will spur you on…
      Good luck!
      Tim

  5. Chris Wotton says:

    It’s Tim’s brother Chris here.

    I have always found it hard to talk about CF in general to Tim and especially about his health. Not sure why. I think I take after my dad in that respect. We don’t wear our hearts on our sleeves.

    I guess part of me thinks that Tim also doesn’t want to be reminded of it and would rather have a conversation about the many other things we talk about eg hockey, rugby, London life, films etc. Converseley, I never have a problem answering any questions about Tim’s health from the many people who ask me about him – and there are many!
    Reading Tim’s blog he’s spot on with his appraisal of how important the family has been in rallying around in the way we all do. I think it’s given him the support that others sufferers can’t rely on.

    I watch him on the hockey pitch and often wonder how he keeps going with half a lung functioning and the constant hacking cough. I find the game hard enough being realitively fit so that just shows you what a ‘tough little bugger’ (Yes Tim – couldn’t resist using it again) he is to keep going even though it’s harder for him to play than anyone else.
    Keep the blogs coming Tim – I’m sure many others read this without wanting to leave a comment but get a huge amount from your delicate words.

  6. Jez Wotton says:

    Following closely on from older brother i feel i want to add a few words.

    Having lived in the same house (actually, same bedroom at certain times) i have seen first hand what Tim has had to go through, but can’t actually imagine how strong he’s had to be over the year’s!

    Whether battling it out on the sport’s field or trying to stay well enough & fit enough just to be able to not only keep pace with friend’s & peers, but to exceed all expectation’s and have a great family,impressive job & write awe inspiring blog’s (like these) makes me very proud to call myself his twin brother.

    Although we are very close (my friends are his friends & vica versa) we are both incredibly different individual’s. Whereby, i am fairly laidback most of the time but can surprise people when my frustration’s come out ‘full-pelt’! Tim has a more measured demeanour & while he will let people know they may have disappointed him he will get his point across in a softly spoken but firm voiced manner.

    When Tim first told me he was doing a countdown to his 40th back in late January 2011 i thought it would be a cathartic experience for him. A chance to maybe exorcise a few demon’s.To sort through both positive & negative thought’s & experience’s in his life – in the past, present & the immediate future, but never realised how eloquently, passionately and alway’s with a dash of that wicked ‘Timmy Wotton sense of humour’ he would make them!

    Good on yer’ bro!

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