Shake the disease

They say the best form of defence is attack. After a lifetime battling a relentless illness, I’ve learnt to fight it by being just as relentless back…

Being ‘relentless’ means showing no sign of stopping or becoming less determined; remaining constant at the same demanding level.

No angel

Anyone struggling with a long term chronic health condition like Cystic Fibrosis (CF)* will have uttered the immortal words: “Why me? What did I do to deserve this rotten illness?” It’s hard not to be angry and bitter and this can result in acts of rebellion and self destructive behaviour, usually starting in your teens.

I drew the line at smoking as with a lung disease that would have been like signing my own death certificate; but I certainly liked to ‘cut loose’ and forget CF through partying hard and alcohol.

Nicknamed ‘Tiles Tim’ by my Dad, I had an insatiable appetite for socialising and partying. I would try to go to as many parties a night as I could fit in and would often go weeks without a night in. Indeed, I was well known for going to the opening of an envelope!

This spanned my late teens, through University life and all my 20’s. I wasn’t sure of the length of time I had left on this planet so I made the most of any chance to have fun and live for every second. 

However, as hard as I socialised, I still tried my utmost not to miss my treatments and medication; knowing that my condition had to come first. I could keep my health reasonably balanced by not cutting the medical corners (even when hungover!). This mindset was instilled and embedded by my parents and has served me well all my life.

Why would I want to cut corners and miss my medication? Even when I take all my medication, it only maintains my health – it never cures. I would feel a lot worse if I missed any of my treatment regime, so what’s in it for me to risk that? It is important to control the parts of your illness that can be controlled.

I have also realised that staying healthy 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 have found my own motivation.

My treatments are something I do to get out the door and get on with my busy life – they are my enablers – they have become a second nature activity like brushing my teeth. This is engrained in my subconscious by constant repetition so that eventually my body begins to remind me what to take and when. This can only happen by taking ownership of the condition rather than relying on others to be your conscience.

Ask not what your body can do for you, but what you can do for your body…

In August 2009 I was taken out of any ‘health comfort zone’ when I was diagnosed with CF related Type 1 Diabetes (insulin dependent) and I needed to add a new treatment and mindset to my already strict regime.

I have become quite obsessed with having stable blood sugar levels, making the insulin work to my advantage – I have had more energy and less lung infections – a positive result out of a negative situation.

I do joke that at last I have a condition (with Diabetes) that people have actually heard of! CF is not well understood and some people are more concerned about my Diabetes than my CF, usually because they know more about Diabetes – I politely inform them that CF is more likely to get me first…

Your body needs you

In dealing with CF I have tended to match fire with fire. I’m bullish about getting my way from hospital visits and I’m probably a pain to medical staff at times. I try to keep on top of the condition and look for new ways to ‘boss’ my illness with changes of drug, alternative therapy or new ways of positive thinking.

I one hundred per cent respect my illness, know my limitations and look to avoid the ‘CF banana skin’ of trying to dismiss it and not take it seriously enough.

A lot of willpower is required to win this ongoing battle. When you get to a certain age you tend to balk at doing things that you just don’t want to do and believe me doing my treatment is the last thing in the world I want to do. I have to knuckle down every day of my life and continually do these unpleasant acts of medication.

I’ve said it before and I’ll say it again, I have to respect this illness 365 days a year: Christmas day, birthdays, my wedding day and honeymoon, holidays, travel, before and after work – I don’t get a day off with this condition. The symptoms of CF and Diabetes don’t take a day off and neither can I.

I get angry on a daily basis about my drug regime, but I have learnt to channel that anger and frustration. I focus my thoughts on what activity (tube to work, playing sport, game with my son, meal with my wife, night out with friends etc) I will do once that piece of medication has been completed, rather than on the actual treatment itself.

There are encouraging trials taking place involving gene therapy and the bottom line for me is that when that comes knocking at my door, I better be ready and in good a shape as possible to maximise the level of cure or treatment it will be.

I still ask myself “Why me?” but it has a different connotation now – why am I still here, what’s the bigger plan for me and what can I do to make sure I keep staying here?

READ ALL ABOUT IT – For those that missed it last week, my story and blog featured in the Guardian G2 Health section on 15 February. Click here to view the article…

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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

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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
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9 Responses to Shake the disease

  1. Pingback: Tweets that mention Shake the disease | Tim Wotton -- Topsy.com

  2. SEAN BELL says:

    hi Tim. Enjoying the blog mate. I’ve always taken the view that I alone am totally responsible for managing my own condition/illnes and that doctors, nurses, whole translant and CF team are just fantastic resources to call upon to assist. I see some patients pre and post transplant (not all CF of course) who don’t take personal responsibilty, get out of condition by not maintaining the healthy regime and attitude that you describe so well and expect doctors to just wave a magic wand and get them better in a jiffy. We both know that is not how it works. Its a partnership between team and patient along with support if available from family and friends. I have been tested in this regard recently when I developed a very nasty pneumonia just before xmas and was rushed into intensive care for 2 weeks plus 2 weeks on the ward. Its been a return to how I was immediately pre transplant, unable to move at all and totally oxygen dependent. Lost all muscle, weight & fitness diligently gained over last 3 years and returned home severely weakened and on oxygen. Employing the attitude you describe, I am now on the path to wellness again and have come off the 02 after 6 weeks at home and am moving forward physically. This challenging road we both face is never smooth but full of bumps and rocks; expect the best and prepare for the worst and we’ll both be ok! Great to follow your countdown. Look forward to next installment. Cheers to you and yours mate. Sean

    • Tim Wotton says:

      My dear chap Sean,
      So sorry to hear that you had a rocky time of late but cheered that you are getting through it.

      For those that read this blog, the name of Sean Bell who lives in Manchester should be held close to your heart and prayers. HE is one of those ‘survivors’ who is older than me and beyond 40 whom I referred to in my original blog post ‘Countdown to 40’ back in January. It is people like Sean who shine their torch for me to follow and I hope to guide others with my light…

      Your words re coping with the ups and downs of CF in your reply: ‘expect the best and prepare for the worst’ convey the thruth of how to best manage this unforgiving condition.

      My thoughts are with you always

      Keep well
      Tim

  3. Olivia says:

    Tim, are you talking about the Vertex announcements? This is exciting indeed!!

    Sean, my hubby, who has CF, turned 41 in November. I am in awe of him every day, for so many reasons.
    You sound like you have a strong spirit, so keep soldiering on! There is so much to hope for nowadays.

  4. Margaret Wotton says:

    Hi Tim,
    It’s your mum again! I feel very honoured when you have made such kind remarks about me, but, you know, we worked at your treatment together right from the start. Physio was tiresome, tedious but oh so necessary but it gave us the opportunity for such long chats. By getting into the habit of twice daily physio even when your chest was reasonable it enabled you to cope better when it wasn’t. I used to physio you in the night if I could hear you coughing to remove that offending plug of mucous and often you would never remember in the morning!
    Readers who are much younger will never believe the hateful smelly powders, that your older brother mentioned in his reply, that were your enzymes to help digest your food. The trouble was the powders digested the food on the plate, gravy and custard used to run off the edge! But you sprinkled them on like salt and pepper and ate your food so enthousiastically. In those days, the early 70s, when all Cf pateints had to have a LOW fat diet you were always hungry so altho the powders tasted vile you ate your meals without any complaints! Then you progressed at about the age of 6 to enzyme tablets which was a slight improvement but by the time the food shunted on from your stomach the tablets had hardly broken down to do their job. It was a miracle time when the microsphere capsules like Creon came on the market and you were allowed a normal eating regime, ordinary milk, a fried egg(!) and chocolate AND at last you began to put on some weight. No doubt, those of you of a similar age to Tim and older will identify with all this.
    Ofcourse you showed rebellion as you got older and I used to feel so guilty at some of your actions because I had passed on my half of your “rotten illness” to you. Because your twin brother Jez, born 10 minutes before you, managed to not even be a carrier when he was able to be tested, I did feel for you. It was almost a relief when Chris returned from a stint in Camp America and had the test which proved he was a carrier.
    You have learnt over the years to be so clever taking your Creon when eating in
    company, how surreptitiously you manage to do it. I learnt from when you were quite young to not remind you if you had taken them, that made you annoyed. Why did you always remember them? Because you knew the consequences the next day in the toilet and stomach pains.
    I often wonder whether your fairly late onset Cf related Diabetes was because your regular sport helped to keep your blood sugars down. But only then did you then qualify for free prescriptions. It is, in my mind appalling that Cf people are not exempt even though they have multi pharmacy requirements after they finish full time education. Again my guilt that this was the case made your Dad and I always pay for your season ticket until 2009.

    Your blogs have identified so many aspects of living with the trials of Cf and I thank God that you have such a wonderful sense of humour. I have known over the years when you were heading for more IV treatment as you, understandably,lost that special Tim humour, your appetite would wane and as we lined up all the syringes for usually twice daily treatments we’d say “here we go again”. Nowadays, you usually have a week here with us intially but Katie does the bulk of it and I know you hate being away from her and your bundle of fun called Felix.
    We’re so looking forward to celebrating your 40th along with Jez, after that mammoth party in London!
    lots of love Mumxx

  5. Jez Wotton says:

    ‘Shake the disease’- another well thought out post.Despite living under the same roof as my twin brother for almost half of Tim’s day’s (including our time in a house share in Southfield’s,London) i am still finding out new and thought provoking facts and revelations about him.

  6. Clint says:

    Hi Tim, just want to say thanks for your Blog. I enjoy reading your words of wisdom on how you fight and make light of CF. Your writings are inspirational and motivational as well as humorous. I also like your mother’s sweet and informative replies, (maybe because my wife and I are beginning to relate to a similar situation). I have son who was recently diagnosed with CF at just over two years old (reason for late diagnosis being that we live in Abu Dhabi in the UAE). Your posts help give me the courage, confidence, and the right type of focus I need right now as a parent in this challenge so keep it up.

    • Tim Wotton says:

      Hi Clint,
      Many thanks for your kind sentiment and I’m so glad my story and words are of help to you and your family.

      Being a parent to a sick child (from seeing it from my own parent’s perspective) is a difficult one but I fed off my folk’s attitude towards me battling CF and it paid off.

      All the best
      Tim

  7. Alix Cass says:

    Your words and your families responses are like gold dust. Thank you so much.

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