For just one day…

We are all prone to say or think “What I wouldn’t give…” or “For just one day I want…” at different times in our lives. Every day, I think “What I wouldn’t give…”, but my wish is unlikely to ever come true…

Cystic Fibrosis (CF) *, a disease which I have endured all my life, is completely relentless – like an incoming tide battering against a sandcastle. I cannot afford to let up or cut any corners medically, as any big lapse could be my undoing. There is not one day off from this illness – it is like having the effects of a heavy chest cold every day of my life!

What’s in a name?

The two words ‘Cystic’ and ‘Fibrosis’ do not mean much outside of the medical fraternity, the sufferers themselves, their family and close friends. In fairness, the two words don’t really resonate and are hard to say – one young patient couldn’t pronounce CF and settled for calling it ’65 roses’!

In my experience, CF is like a form of ‘locked-in syndrome’ as all the damage is on the inside and not very obvious to the naked eye.

Think of a number

The ‘CF survival regime’ consists of around 40 tablets a day, IV long line treatments for three weeks at a time (the CF version of chemotherapy), nebulisers, physiotherapy sessions and regular visits to hospitals and the pharmacist.

As a rough calculation I swallow 280 tablets every week, which works out at 14,560 a year and 364,000 over the last 25 years.

Also during this time, I have had 10,000 nebuliser sessions, 18,200 physiotherapy sessions, over 50 IV treatments, 600 visits to my chemist and 250 visits to Frimley Park hospital.

All this is merely prevention as there is no cure for CF – it just helps to maintain my current state of health. I am quite literally ‘locked-in’ to my treatment just to stick around.

This regime manages a condition that is not well understood, cannot be easily seen or ever properly imagined by most people.

All this for the blank look I receive when revealing my condition to most strangers – that look where they nod their heads but are thinking “you lost me at cystic but I better keep looking like I understand and care”. That look punctuates the entire life of someone with CF.

I find it sadly ironic that I follow my daily regime with military precision just to stay alive and hardly anyone has a clue!

For just one day

When CF causes me stress, I dream of that day – the perfect day – where I can be spontaneous and take a holiday from my illness. On that special day:

I would wake up and not cough like a 40-a-day smoker,

I would go off to work without needing to find 30 extra minutes for treatment,

I would get in early and leave late without having to factor in when I will fit my medication in,

I would eat lunch with colleagues without having to surreptitiously take tablets when they’re not looking,

I would return to my desk and not need to inject myself with insulin or bleed on my work shirt,

I would go for a run and not need to stop regularly to cough,

I would get caught in the rain and not care at all about catching a chill,

I would have all the energy I need to work and play,

I would go to bed at the end of the day without worrying how a coughing fit might wake up my wife and my son.

What I wouldn’t give for just one day off…

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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

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

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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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26 Responses to For just one day…

  1. nonameexists says:

    Hi Tim,

    Really good to read your blog. A good friend of mine has CF and will turn 34 in a month. He’s had his ups and downs and as you say most people won’t even realise what he has to go through just to get by every day. He’s an inspiration to me as he hasn’t let having CF stop him doing some amazing things.

    All the best in your countdown to 40!
    Abigail

  2. Tim "Digger" Betts says:

    I will never complain of a chest cold again!

  3. Anne Iskander says:

    I will never complain about walking in the rain again (Now I miss pushing the pushchair in the pouring rain)
    Keep up the good work.

  4. Juliet Chevalier-Watts says:

    I found that very hard to read indeed – it made me look at me and realise how complacent I am. 😦 Thank you for sharing.

  5. Al says:

    I suffer from cf and cf related diabetes and will be hitting 30 this year. The vast majorty of your post is like someone has just read my mind, when I read it I was amazed that I hadn’t written it myself! I find it very frustrating that I spend so much time/energy on either planning for/doing my treatment when the vast majority of people have no idea! Hvaing said that, if I didnt adhere to the daily regimne, I would become ill and therefore unable to live a ‘normal’ life so its a catch 22 situation. All the best and kepp blogging!

  6. Leanne Brown says:

    Another great posting Tim, I love the way you express yourself.

    When you talk about what you have to do for ‘prevention’ – I can understand as I feel the same when we are administering meds to my little girl Carrie. Its like you say your ‘‘locked-in’ to it ‘just to stick around.’

    It also reignites with me your comment about the ‘blank look’s’ when you reveal you have CF and you know they are thinking “you lost me at cystic but I better keep looking like I understand and care”.

    I talk a lot about Carrie and her CF to all sorts of people I come into contact with, (I am a bit of a chatter box! ) but I think it helps to talk about it to up the awareness of the condition … however when I read your first post I felt I should curb that over zealousness to tell everyone as Carrie might not want everyone knowing … however this will probably come when she is a little older (she is 2 next week) and I will need to give her the space to decide who and what she tells …

    Keep up the great posts – they definitly make me stop and think and that can only be a good thing 🙂

    Leanne

    • Tim Wotton says:

      Hi Leanne,
      Thanks for your kind words. Carrie and you will find the right balance in due course for how much you talk about it. As a child, I expect she will feel a bit ‘special’ about her illness and different but not in a stigmatised way. She may even be allowed an extra sweet or gift because of what she has to endure that other children do not. As she gets older, look to empower her to ‘own’ the condition and she will learn what best suits re treatment and talking about it with others.
      I hope the blog posts continue to stop you in your tracks and take time to think…

      God Bless
      Tim

  7. Cawders says:

    Your beautiful boy is testiment to your inner strength and determination. When you feel like a day off, do dream of him.
    Keep looking to the future, as do I, and particularly ??a big 40th bash in Morden??
    Hugs x

  8. Rupert Brow says:

    Beautifully expressed again Timmy. Well-honed skills of the quill from Graeme Youby’s History lessons. What a gay time we had (until girls came to complicate affairs in the 6th Form). I’ve known you 26 years. I’ve totted up and you’ve had around 380,000 pills in that time. I think I’ve seen you take about 8 or 9. One day you will beat this. It’s not strong enough for you.

  9. Stewart Jones says:

    An honour to know such a strong MAN! So proud of you and wish you all the happiness! Keep fighting on.
    Crewit!

  10. kate says:

    I remember your extremely discreet method of taking your tablets at work with lunch ;o) The figures are unbelievable, calculator required indeed!

  11. Stephanie Cooper says:

    Hi Tim
    You are putting so much time and effort into such a very good and informative blog and the link through to the CF website will encourage many other CF sufferers.
    Colin and I are aware what your body goes through every day of your life – but when seeing it in black and white it really brings it home what is involved. I know many people will be stunned to discover your daily regime over the last 40 years.
    Take care
    Much love
    Colin & Stephanie

  12. Bex Bennett says:

    Another very good and eye opening piece.
    This is going to be so helpful to people struggling and effected by CF and raising general understanding.
    Keep up the good work!

  13. Caroline Dudley says:

    Thanks for this insightful blog. My little boy James who has CF turned 4 yesterday and we’ve had our ups and downs along the way so far and I’m sure there’s many more to come. I often get frustrated by the amount of work I put in to keep James healthy only to have his condition belittled by comments of ‘but he looks so well’ and ‘with all the research going on, it’s not as serious as it once was’. I was very interested by your comment to another Mum re. ‘feeling special’, James has recently (only in the last week or so) started asking why he needs creon – I use the ‘because you’re special’ line but don’t what him to think he’s not ‘normal’ – a constant battle to get the balance right, which is true of all parenting challenges!
    Keep up this fantastic blog – it’s great to read and makes me more hopeful for the future than it makes me frustrated by the present.
    You’re an inspiration. Caroline

    • Tim Wotton says:

      Dear Caroline,
      I’m sure a lot of comments you receive are meant well, even if they feel belittling at times. I have had the full mix over the years – those who asked me about my health every time they see me, those that tried to mention it but were akward (not always there fault) and those that were the classic ostriches and never said a word (though sometimes this was due to my desire to safeguard the subject).
      There will be times that James will not be able to do ‘normal’ activities that his peers do without a second thought and it is at those times that you need to make him feel ‘special’. As you say, a tough trick to get right…

      I’m so glad that my words were of comfort to you…

      God Bless
      Tim

  14. seanset says:

    Hi Tim,

    I am very much looking forward to following your countdown to reaching 40, and hope you carry on blogging when you pass that milestone. I know of a few CFers that are in their Thirties and Forties, there is a very large and active CF community out there in cyberspace, many of them have blogs or are on Twitter.

    I have 2 girls with CF, Lauren(19) & Robyn(10) so can really identify with the amounts of meds & treatments that you have had in all of your life.

    Keep fighting the fight.
    Regards Sean

    • Tim Wotton says:

      Hi Sean,

      Thanks for the feeback on my blog. Hopefully the quantity of meds will be reduced in the near future with the arrival of gene therapy.

      I do hope my blog can increase your family’s fortitude to keep winning the battle.

      Best
      Tim

  15. Olivia says:

    Aw, Tim. I feel for you, I really do.

    My husband, who is literally the man of my dreams, my treasure and my angel, has CF. He is also my miracle; he turned 41 a few months ago. I am so proud of everything he has done, and everything he dreams of doing. We got married last September and are beginning the unavoidable Process of starting a family this year.

    His may be milder than yours as he takes much fewer tablets, mainly antibiotics and special vitamins as well as enzymes of course. Then there are the 3 or 4 nebulized treatments, and the Vest, which is amazing. He also likes protein drinks and bars.

    CF has never stopped him, from wrestling in high school, to jogging, rowing, skiing, and most amazing of all, bodybuilding when he was in his 30s! He is very successful in his finance job, and then just because he could, got a law degree. He never ceases to amaze me. He hates anyone to know about his CF so all but his closest friends know. He’s used to it, but it’s sometimes hard on me as I don’t know how to conceal certain things, I guess. I think the hardest thing is people thinking that we can just have a family the normal way, and last week he had to do damage control when I leaked something about IVF to people outside our close circle.

    He is under the care of the wonderful CF clinic at Johns Hopkins, joins all the studies, and we are excited about the next couple of years. Next summer there will be an effective new inhaler available to CF sufferers, and within another couple of years the FDA will have fast-tracked to the CF community what can only be described as a miracle drug. As close to a cure as we can get, as it correct the problem at the cellular level. Next step: correcting the gene.

    There is much hope for the brave souls with 65 roses!

    On the other hand, I am struggling with the slow decline of my mother, who has had ALS/motor neuron disease for a couple of years. She and my hubby share so many similar personality traits and they adore each other. There is no real treatment for ALS and certainly we are nowhere close to a cure.

    I may lose my mother to something, but I refuse to lose my sweet husband to anything, and thank goodness, he will live a long and happy life with me and our children 🙂

    • Tim Wotton says:

      Hi Olivia,

      Thanks for your heart-warming message. I wish you all the luck in the world with IVF. It’s an emotional rollercoaster but God willing, you will have your ‘miracle’ baby that you clearly deserve.

      Enjoy my forthcoming blog posts
      Best
      Tim

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  17. Karen Murphy says:

    Hi Tim

    I came across your blog purely by accident, but felt drawn to reading it.

    I have a 13 year old boy with CF and reading your comments, was like reading my own mind.

    Unless you have CF or are very close to someone with CF – you have no idea how much goes on behind the scenes, just to keep you reasonably well.

    Reading your comments gives me hope for a future for my son, when sometimes there seems to hope at all.

    Karen Murphy

  18. Cecileah says:

    Thanks Tim.
    Cystic Fibrosis does lack a physical face, being a relatively hidden and internal condition can be a blessing but also a curse. It allows our daughter to be able to lead a “normal” life although many people are innocently and blissfully ignorant of the challenges she faces, the strict daily regime, planning, management, precautions and unappealing time consuming treatments involved in just keeping her well. Most people are only around for the good times to see her cute dimples when she smiles and laughs. When people learn of her condition they often comment “but she looks so well” having no idea of the relentless daily effort it takes to achieve and maintain this. As parents we will hold her hand through all the tough times and she will hold our hearts forever.
    Everyday we put on our brave and positive parenting faces, for her sake and ours. That takes a great amount of energy to do, and yes, we know and have been told countless times – it could always be worse – but when you are living it, it is actually a relief for it to be acknowledged that CF is hugely challenging and this is not an easy parenting role. A little bit of empathy, encouragement, involvement and understanding from family and friends goes a very long way. Empathy, encouragement, involvement and understanding are some of the greatest things people can give back to the CF community, it is what fuels us to maintain a positive outlook for the future.
    Thanks for sharing Tim. We look forward to your future posts and hope friends and family can gain some insight from your journey.

    • Tim Wotton says:

      Dear Cecileah,
      Thanks for your heart-rendering comments – your daughter is in good hands!

      Keep on reading the blog – I hope to continue to spur you along.

      All the best
      Tim

  19. Maxine says:

    Apologies for the delay in commenting Tim but I’m so blown away I haven’t known where to start! This blog is amazing … you’re amazing! Its actually quite strange hearing you sharing the miriad of daily struggles that are required to maintain your health, and the tortures they bring. And that’s because I know in the past you would do anything to keep CF private – you never, ever wanted to be treated differently for having it so the less anyone knew about it the better.
    I love what your friend Rupert says about the fact that of the 380,00 pills you’ve popped since he’s known you, he’s only seen you do 8 or 9 – that sums up perfectly your continuous & very private battle to maintain “normality”. But the change in you to share your innermost thoughts and struggles is fantastic – it’s giving strength, hope and a greater understanding to hundreds of CF suffers, their families and their friends while hopefully at the same time heightening people’s awareness of the disease and boosting its public profile. You should be so very proud. Good work fella! Bring on the 40’s! x

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