45 year old Tim Wotton is living proof that it is possible to lead a fulfilling and successful life with cystic fibrosis and cystic fibrosis related diabetes (CFRD). He is the award winning author of ‘How Have I Cheated Death?’, a must read book for everyone in the CF community, and indeed for anyone who wants to read about making the most out of the limited time every single person has on earth. He is also a keen sportsman, one of the things he attributes his good health and longevity to, and has even represented England at field hockey in his younger days.
Alongside all of this, he also finds time to work full time as a communications consultant in the energy sector, as a patient ambassador for the CF Trust and as an international public speaker. Most importantly of all, he is a father to nine year old Felix and husband to Katie, a senior nurse.
In this interview we only get a chance to scratch the surface of how he has achieved all of this with CF and CFRD (his book is far more in depth for those who want to learn more). Amongst other subjects, we talk about the importance of sport and being active, the psychological benefits of writing and how to fundamentally approach a life with CF.
Martin) The sport of field hockey has been one of the pillars of your life. How important has it been for your health to have a regular and enjoyable sporting pursuit in your life? And what advice would you give to parents of young children with CF with regards to how and why they should get them involved in regular exercise?
Tim) I am living testimony that regular exercise has become a necessity to keep my lungs ‘tuned’ and it impacts me both physically and mentally. I strongly believe that any activity that exercises the lungs of someone with CF is hugely beneficial.
I’m realistic that not everyone likes sport so the exercise can be in the form of playing an instrument where you need to blow, swimming, singing or being on the trampoline.
Exercising has been one of the key differentiators in reaching 45 years old with my own lungs. Without a shadow of a doubt, a large part of my longevity in the battle to defy CF can be credited to the amount of sport I have played throughout my life; mainly field hockey, basketball, tennis and more recently running and weight-training in the gym.
I won’t be taking part in an Iron Man competition any time soon, as any exercise is relative to your fitness levels. But my hockey, gym and jogging keep me going; feeling like I’m conducting a relatively normal life. By forcing myself to breathe hard while exercising, I in turn breathe life into my lungs.
M) Good time management is essential for all of us with CF as we try to fit in our daily healthcare routine (physio, nebs, etc) with everyday life. Being a father must stretch you even further timewise, so you must be an expert when it comes to this! What practical tips do you have for people to make the most effective use of their time?
T) If I have to get to work earlier than normal there are a number of things I can do to help the morning CF and diabetes rituals go smoother: Get my outfit out in the spare room, shave the evening before, get all the tablets into a small container (you lose about 3 minutes taking all the pills out of their individual containers or foil wrappers.
I will also take the individual blisters out of the foil wrappers of inhaled medication like Mannitol and Tobi Pod Haler… all these minutes add up when you have other priorities like my wife and son to think of.
If really in a hurry, I’ll have my breakfast at work but have a Fresubin drink on the commute so that I don’t get too hungry.
M) Your approach to fighting CF includes using complementary therapies, such as kinesiology and reflexology, alongside traditional medicine and therapies. How do these complementary therapies help you?
T) As part of my holistic approach I use the power of complimentary therapies. Over the last 15 years, I have had repeated private sessions of reflexology, aromatherapy, health kinesiology and even crystal and hands-on healing.
I have been having kinesiology for over 10 years and it has been very helpful. It’s guided by a principle that my body is asked through muscle testing what it needs to enjoy vibrant well-being, and my body actually answers back. This technique accesses my body’s unique inner wisdom, to determine where imbalances lie along the body’s 14 energy meridians.
Armed with this information, my practitioner performs a range of corrective techniques specifically tailored to my needs. In my experience, the greatest help of all alternative therapies has been re-correcting my energy flow and vitality when the ravages of CF have dragged me down and I’m struggling.
M) Having a disease as cruel and relentless as CF inevitably leads to emotional and mental stress for sufferers. Did you find writing your blog and book a cathartic experience? Would you recommend writing as an outlet for all CF sufferers, even if it’s just a diary or journal?
T) Reaching 40 in 2011 was such a dramatic life-affirming landmark for me that I felt I needed to share my experiences and survival lessons. When I was 38 I had the epiphany that still being alive with CF was not a fluke and that I had many useful strategies and anecdotes that needed to be offered to others. As CF can be so isolating, I had an overriding desire to reduce the burden of carrying this horrific condition on my shoulders by opening up more.
As I began to delve deeper into my daily health challenges and uncover my personal demons it became obvious to me that being authentic meant bringing out my inner feelings on every facet of what I’d endured to try to leave a normal life.
By opening up through my ‘Postcards from Earth’ blog and my CF memoir has been very cathartic and has stopped the build-up of so many harmful suppressed emotions that were bottled in for too long. Also, I definitely noticed that the new transparency about my CF struggle was being reciprocated by many people I came into contact with.
Not everyone wants to write a blog or book, so I would recommend getting your feelings down on paper, even if you’re the only one that sees it. One suggestion would be to write a pro’s and con’s list about your life. Yes there would be lots of negative CF parts but I would expect there to be more positive elements.
M) You’re a very positive person, something which I know you proactively work on being. You mention a quote in your book that I really like; “The quality of your thoughts determine the quality of your life”. How do you ensure you have good and positive thoughts even though you’ve been dealt such a tough hand in life?
T) After a lifetime battling a relentless illness, I’ve learnt to fight it by being just as relentless back. I achieve this through a mixture of exercise and being diligent with my medical regimen. I will be shaken every day in many ways, but I will not be stirred.
Jack Dempsey the US heavyweight boxer summed it up: “A champion is someone who gets up even when he can’t!”
I will be that CF champion, re-set myself mentally at the start of every day by telling myself what I will do and achieve that day despite my conditions.
M) Bugs and viruses are the bane of our lives for those of us with CF. As a father to a young child this must be intensified for you even further as you’re constantly exposed to the viruses that school kids always pick up. Do you have any tips for minimizing the number of bugs you pick up?
T) More so than most parents, I’m very aware of the risks of being too close to my son Felix when he has a sniffle and as harsh as it sounds, I shield myself by not kissing him at these times. I certainly do not share his eating utensils, cups and food. One example of my desire to protect myself from cross-infection is that I will never eat his ice cream as I see so many parents doing without a second’s thought.
I am missing out on sharing particular life moments with him, but common sense has to prevail for me. I wouldn’t be terribly happy with myself if I let my guard down and subsequently got a cold from him. I am delighted to be his dad but it comes with certain limitations. Generally, I do as much as I can and act like any normal dad running around with Felix, which I know he appreciates.
Generally, I am very proactive with boosting my immune rather than waiting for a cold and then taking something. I take a chewable Vitamin C and one Multibionta Vitality tablet each day and always sanitise my hands with hand gel out and about, especially after opening doors and shaking hands with people I meet. I also wear the glove provided in a petrol station when holding the petrol hose while filling up my car. Anything and everything to mitigate catching other people’s germs.
M) One of the (many) tricky balancing acts that us CFers face is the conflict between trying to fit in as much as we can in our shorter lives with the fact we have less energy reserves and less free time than others. You’re somewhat of an expert at this though with your ‘Windows 7’ weekends (trying to fill each of the seven weekend windows – Fri night, Sat morning, afternoon & night, Sun morning, afternoon & night – with an activity) to ensure you get the most out of life. How do you manage this difficult balancing act?
T) This full-on ‘Windows 7’ lifestyle which spanned my late teens, university, all my twenties and early thirties, was driven by the likelihood that I would die young. When time is likely to be short with the life clock ticking loudly and the sand emptying from my hourglass, I always felt there was so much to do but with so little time to achieve it.
Nowadays, I still like to maximize the windows of each day to fit in quality time with family, my vital exercise in the form of hockey on Saturdays and going to the gym in the evenings, my business consultant job and of course socializing with friends.
I also try to be around for Katie and Felix as much as I can, giving Felix quality time, coaching him to play hockey, taking my turn to get up early with him at the weekend, going out on family days out and taking Katie out for dinner.
M) Are there any other tips that we haven’t mentioned that you’d give to people with CF, or their loved ones that have helped you live such a fulfilling life with CF?
T) I’ve realised that staying healthy and fit doesn’t just rely on a compliance to taking my medication, it needs something more – an ‘absolute commitment’ to keeping well. Actually ‘wanting to’ rather than ‘having to’ be healthy is very empowering. I do my medication even when no one is watching. I form new habits with taking medication as quickly as possible so it’s engrained. I don’t wait for family and friends to remind me. Unfortunately, I have this condition but it’s better to ‘own’ it rather than for others to be accountable. My main mantra has always been: ‘I’m only as healthy as my last treatment.’
Despite what you may think, no one has a charmed life. Resentment (envy) towards our healthy peers is understandable but can destroy one’s heart, mind and life. It’s important not to resent them but show them love and compassion. I choose to row my own boat (be single-minded), focus on myself and the life I have rather than the life I have not.
I think it’s important for people with CF to reward themselves and celebrate our determination and bravery to endure every day what cannot be cured.
As my life is held in an hour glass with the grains of sand running out rapidly, I feel very driven and want to leave a lasting legacy. In essence, surviving CF makes every day feel special. Every extra day grants me the opportunity to make a difference for myself and others. Healthy people seem to strive for the next big goal and can rarely stop to enjoy their success and appreciate the smaller (important) things in life. People with CF have an (enforced) richer perspective on life and I believe can live more profoundly ‘in the moment’ by appreciating the here and now. We therefore may feel more moments of pure contentment in our shortened lives than others do in their longer lives.
I’m always looking to finesse my physical and mental approach to battling CF and all the 1% improvements I can make. CF is relentless and we need to be equally relentless back…
A massive thank you to Tim for taking time out to do this interview. You can follow Tim on Twitter on @timwotton , read and subscribe to his excellent blog Postcards From Earth, read his book How Have I Cheated Death? or contact him on email@example.com
*ALWAYS ENSURE YOU SPEAK WITH YOUR MEDICAL TEAM BEFORE MAKING ANY HEALTH RELATED CHANGES TO YOUR LIFESTYLE*