I live with my lovely wife (Katie) and son (Felix) in Morden, Surrey; working full-time as an employee engagement and change communications specialist. I have played sport all my life, particularly hockey. Cystic Fibrosis, which I’ve had since birth, has been a huge factor in my life, but not one that overshadows it.
I’m a health and D&I advocate, storyteller, motivational speaker (on my survival story, the strength of the human spirit and mental resilience coping strategies) and an eternal optimist.
I have always had great support from my loving family – parents Margaret and Douglas, 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 50 years. My eyes and heart have been opened by my health struggle.
My passions include sartorial elegance (believing that it’s empowering to dress like it’s your last day on earth), spicy food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history.
I am available for public (inspirational) speaking on my survival story, health advocacy, mental resilience strategies and can be contacted via timwottonAThotmailDOTcom.
MY BOOK IS PUBLISHED
I have written a book ‘How have I cheated death?’ based on my euphoric 40th countdown year which was published in May 2014 and available via e-book and paperback at Amazon.com and Amazon.UK 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
Tim Wotton, a Cystic Fibrosis sufferer, has been defying the odds for over 50 years and is sharing his life lessons and experiences. After counting down to the massive 40 milestone in 2011, he is now regularly sharing his trials and tribulations via this blog and his popular book 'How have I cheated death?'…
Tim Wotton 
Great blog; everyone’s life expectancy is unsure but is never put into such sharp focus as yours. Your attitude & words should inspire everyone to take charge of their short time and make changes that will positively impact them, their family, friends & strangers. Be an agent for positive change.
It’s great that you are nearly 40, but that’s young! Trying being nearly 50 with CF! Hope to see you there too!
That should read ‘ try being nearly 50 with CF’ Tim. (failing eye sight comes with five zero 🙂
Hey mate,
I too have CF and live in the same way you have written about. Im 25 this year and see that as a huge milestone that in all honesty I didnt think id reach and I will celebrate that in a huge way!
There are a few similarities between your story and mine in that I work full time, have a home with mortgage (again something many had a doubt would be achievable) play sport when I get off my lazy arse and live with my girlfriend.
Like you i’ve seen many go before me after losing the CF battle but again that has inspired me to live my life to the best I can.
Reading your blog and seeing that you can get to 40 is indeed inspiring and really gave me a buzz.
Looking forward to reading more.
Michael
Thanks Michael. keep up the good fight, no matter how it feels bleak at times. You and I have so much to stick around for!
Cheers
Tim
Dear Tim,
Brilliant stuff. You have written your piece well and I can identify with all that you say. I understand exactly what you mean when you now want people to know what the conditon is all about and what challenges we face.
I also want more people to know how well I am doing if that makes sense as it IS a daily struggle – if people, my friends and family, can see who I have become and who I am on top of what we have to do to get through a day without a bit of pain or a bit of breathlessness, never mind worry and stress then I want applause thank you very much!!
I am 37 and a half with CF, CFRD and osteopenia but looking great 😉 and keeping well. I now work for the CF Trust also! Life is good and life can be short so yes, lets make the best of it.
Bring on the 40th – feel the fear and do it anyway!!
Congratulations,
Yvonne
So wonderful to see you all today and so glad I have logged on to read your blog. Brilliantly written, moving and inspiring and so lovely seeing that beautiful photo of you, Katie and Felix. We can all learn from your philosophy to living life to the best of your ability and how precious every day (I’ll try and remember that the next time I nag Mark to do something or argue with him over picking his socks up!)
I hope to see your article in the Guardian next time!
Lots of love
Lorraine xx
It’s funny how we just get on with it, but how depressing it is when you actually read it in b&w. It gets to the point where you’re just so, so sick of it all & the long rest seems just that little bit more inviting despite having to leave people behind. I too could do with that perfect day off. My family unit looks the same as yours & to be truthful they’re the only thing that keep me here. I wouldn’t have the energy for it all otherwise. Bless you fella. Your doing good work here.
Hi Craig,
Writing this blog has helped me put ‘our struggle’ in black and white and it is hard to land the right words to really do it all justice – your comment backs up that I seem to be on the right track!
Trust me, I know what you mean about the long rest – if you can, I would read Wilfred Owen’s WW1 poem ‘Wild with all Regrets’ – it sums up perfectly the mental battle of someone’s time running out…
I hope I can continue to do you and the CF community proud with sharing our story.
Best
Tim
Hello Tim,
I have just discovered your blog through the cystic fibrosis trust website and have found what you have written has deeply moved me and allowed me to simplify the complexity of emotions that I have running through my mind at present. I have a little boy of 8 who was diagosed with cystic fibrosis just before Christmas. Just like you said I didn’t really know what it was until I did some research, it was then that I felt like I’d been hit over the back of the head with a shovel. The fear that I had for his future has robbed me of sleep since the 3rd December 2010, though having just read your inspirational words I am feeling something that I haven’t felt in a while, positive….
So, it is with much appreciation that I offer a sincere thankyou for your words of honesty, integrity and above all else, hope.
Helen.
Dear Helen,
Your words deeply touched me. I’m so glad that my story has helped you in any way. There won’t always be a straight road dealing with CF but your fortitude will move mountains for your son.
God Bless
Tim
Hi Tim
A superb blog! Completely resonates the feeling most of us with CF experience and reinforces really well the message that what the casual observer sees isn’t actually the full picture, by any stretch. I’m sure your story (approaching 40, with child etc.) is inspirational to many (like me) with CF and with CF in their families – wishing you continued good luck along the way! Dom
Hi Dom,
Thanks for taking time to comment. CF can be a bit like an iceberg of a condition – there’s a lot under the surface!
I’m trying to chip away at that ice!
All the best
Tim
Hi there!
Just been reading your blog, my husband, who has CF, will be celebrating his 30th birthday this year. I remember when I first met him and him explaining to me that he might not reach 30 so its a big moment for us too. A massive celebration all round!!
Much love,
Amanda
Hi Amanda,
Each milestone should be celebrated. Congrats to your husband who will be 30 years young!
Enjoy the blog…
Best
Tim
It’s hard to search out knowledgeable individuals on this subject, but you sound like you understand what you’re speaking about! Thanks
Reading your post and the comments following really touched me. You’re doing a remarkable job doing what you’re doing. Keep it up. It matters.
I’d like to feature this site on mine, would you mind?
God Bless
Dear Hannah,
Thanks very much for your sentiment. Please feel free to promote this blog on your site…
Best
Tim
Hi Tim,
I was reading the CF Trust website this evening and discovered the link to your blog. I was so excited to read it as I recognised my story in much of what you were saying. I am a 30 year old PWCF, and have the stresses of a full time job and a mortgage to deal with too.
However, I have been a Christian since I was 14, because I decided that there must be an afterlife if I wasn’t going to live long, and God has been an enormous source of strength for me ever since. I have derived lots of strength from attending Church and taking myself off on retreat vacations. Sometimes it’s so hard to see the future but it’s good to know God’s there in the tough times.
I can’t wait to read more of your blog!
God bless,
Lucy.
Dear Lucy,
Thanks for sharing your testimony about your CF and your powerful faith.
Sometimes in life, it’s not until one’s very existence comes into question, do people suddenly feel an innate calling to a power greater than themselves. Inner peace is something that can’t be purchased over the counter but is worth its weight in gold.
I do hope you continue to find some help and hope from my blog.
God Bless
Tim
Hi Timmy
I think of you every now and then and am so glad that I discovered your blog- I remember the long drinking sessions disguised as “hockey tours” and your fantastic skills on the hockey field along with Jules Hale, Jill and Stuey Ward, Steve Banbury, Ben, Emma and Julie Violet…etc etc This seems a lifetime ago now with marriage, kids, mortgages etc etc. Anyway, please email me with the date of your 40th birthday because I want to wish you a happy one. I will have to send Jules Violet over to say happy birthday “inabsentia” since I’m back in Australia.
I read this quote recently and I can see that you are living proof of that.
“Be the change that you want to see in the world. M. Gandhi”
Congratulations on your inspirational blog!
Cheers Jules
Hi Tim.
My name is Mike and I suffer from CF. I had a double lung transplant 14 years ago and am 5 months away from my 50th birthday.
I was told the same statistics as you many times and the odds of surviving a transplant.
But hey I am still here and complating taking my motorcycle test this year to ride a motorcycle on thr road. I live a full life have a full time job a couple of off road motorbikes and a sports car. I have just read your story in the mail and it was very good.
All the best,
Mike.
Hi Mike,
Sounds like I should be reading your blog! Well done and keep going full throttle!
Best
Tim
Dear Tim,
I would very much like to set up a telephone interview with you, so you can continue to inspire others with your positive attitute and zest for life!
I couldn´t find any other way of contacting you. I hope this reaches you!
I look forward to hearing from you soon.
Kind regards,
Hannah
About Tim Wotton | Tim Wotton Magnificent goods from you, man. I’ve understand your stuff previous to and you are just too wonderful. I really like what you have acquired here, certainly like what you are saying and the way in which you say it. You make it entertaining and you still care for to keep it smart. I can not wait to read far more About Tim Wotton | Tim Wotton again from you. Thanks For Share.
Thanks for your reply – it means a lot to me. I’ll keep blogging if you keep reading!
Best
Tim
Hello there, just became alert to your blog through Google, and found that it’s really informative. I’m going to watch out for brussels. I’ll be grateful if you continue this in future. Lots of people will be benefited from your writing. Cheers!
I and my buddies ended up examining the great thoughts found on the blog and so all of the sudden got an awful feeling I had not expressed respect to the web blog owner for them. These young boys became absolutely stimulated to learn all of them and have in effect very much been having fun with them. Appreciate your indeed being well helpful and also for settling on this sort of beneficial guides millions of individuals are really eager to know about. My sincere apologies for not expressing gratitude to you sooner.
Hi Tim
How are you? All is very well my end. We have family friends whose grandson has CF. His name is Brad Wells and he is 16 years old. He is doing a charity cycle ride to raise money for CF. His fundraising page is http://uk.virginmoneygiving.com/BradWells for anyone who wants to sponsor him.
Take care and see you soon!
Nicky x
Hello Nicky,
It’s been a while and it’s nice to hear from you. Thanks for sharing Brad’s link and I wish him all the very best next weekend.
All the very best
Tim
I simply want to tell you that I’m very new to blogs and honestly savored you’re blog site. Likely I’m going to bookmark your blog . You certainly have wonderful writings. With thanks for revealing your web-site.
Hi Tim, I have just read your blog and am in awe of your spirit and determination! I have a beautiful daughter called Robyn with cf. she is nearly 18yrs now! Up until she reached 12yrs she only ever had one admission for I/vs. Since then it’s been an admission once a year! Mainly down to her non compliance with physio and medication! Our relationship deteriorated so much due to my angst, frustration and her stubborn I don’t care attitude! I found the paediatric service fantastic in their care of her but found them lacking dealing with her as an adolescent ( still treating them like babes) afraid of telling them truthfully the consequences of not taking medication etc! she has now transferred to adult care and has been scared witless by what the team are telling her, is angry that the paediatric team didn’t! Our relationship has improved as I have given up nagging, shouting, and pleading as its up to her now! She is still avoiding doing her physio as there’s always too busy, I get her nebs ready and they are still there when I get home from work! Please tell me that the light will come on in her head soon, I can’t sleep as I worry, she’s got a terrible chest infection at the moment and its inevitable she will be admitted but I still cannot get her to understand the bigger picture! She is training as a hairdresser so works very long hrs and is on her feet all day, I appreciate that and she wants to go out band have fun with her friends etc, but how can I get her to understand that she needs to keep well in order to have a full and happy life, as every time I hear her cough I die a little inside as her lung function has deteriorated a little each time she has been in hospital!
Karen, what heart-felt words – thanks for your candid reply. If Robyn is willing, get her to view one of my earlier blogs called ‘Shake the disease’ which centres around drug regime commitment and motivation. As grim as it all is, you are only as healthy as your last treatment. If you miss that treatment out, you will be less helpful… do offer my email to Robyn as I would be happy to connect with her if you think she wanted to listen…
All the best
Tim
Hi Tim,
I’ve just read your latest blog with great interest as I have two sons with CF (aged 42 and 39) and obviously they meet each other on a reasonably regular basis and were brought up together! One has cepacia and the other doesn’t. Toby, the eldest, lives in Scarborough where he is in regular contact with his second cousin of around the same age who also has CF. They do meet regularly, work for the same company and often go on holiday together.
I understand the logic of avoiding contact but, as you say, you are quite likely to be in contact with other CF sufferers by chance and there is little you can do about that. I suppose it makes sense for the CF Units at hospitals to try to avoid cross contamination but in the real world it is nigh on impossible.
Best wishes
Cath
Dear Cath,
Thanks for sharing and I’m delighted your two sons are going well. You make some good points and while the CF clinics can put guidelines in place to reduce cross-infection it is tough to enforce it outside in the real world. CFers need to make their own choices in life but it’s important that they know about the cross-infection risks.
Kind Rgds
Tim
I have friend that had a double lung transplant at 26 years old here in a few weeks he will be 36 years old. He lives life to the fullness. He openly will talk about CF and wants to educate people on it, Even tho the last three weeks he been very sick, but still seems to be full of life and wants to live life in full. Reading this blog has help me to understand why does not let CF get him down and I now can see anyone with Cf needs to live life to the fullness.
Vicki
Dear Vicki,
Thanks for writing in and sharing both your personal feelings about CF and the life of your dear friend, who life all CFers probably lives ‘life’ more in just one year than most do in a lifetime.
All the best
Tim
Hi Tim, as are an example to us all and have a wide reach of followers I wondered if I could get your help publishing the attached article concerning Cough Assist devices and their impact – https://docs.google.com/open?id=0B4_iwODzdomMZE05Y3UxLWtqNUE
I’ve been browsing online more than three hours today, yet I never found any interesting article like yours. It’s pretty worth enough for me. In my view, if all site owners and bloggers made good content as you did, the internet will be much more useful than ever before.
Howdy! This post couldn’t be written any better! Going through this article reminds me of my previous roommate! He continually kept talking about this. I’ll forward this information to him. Pretty sure he’ll have a good read. Thank you for sharing!
Hello Tim,
I have bronchiectasis and like you, think that Ron Knight has saved my life. I don’t know if you have heard of the news that has put an end to his brilliant career. I am sure that he would be glad of our grateful thanks but will try to make contact through his old secretary, Sue, if she is still at FPH. Will keep you posted.
Regards,
Annie
Hi Tim
I have just been made aware of your blog by Lauren (played Hockey with you) and is now in my son’s baby sing and sign class with her daughter.
My son Ben who is 4 and a half months old was diagnosed at 4 weeks with Cystic Fibrosis. The feelings I have had have been overwhelming, the up hill struggle to get my head around things but I’m getting there albeit slowly (some days its just hard). I worry about the future
He is the apple of my eye, my angel, looks so healthy and although is reluctant to complete his physio each day is doing really well with medication.
I am trying to socialise but at the same time worry constantly about infection. I know we have a lot ahead of us and himself in his older years (god willing)
It was comforting to me to read how you have and continue to manage and with dedication to a routine and treating the condition as a way of life means he will have many happy years ahead of him.
I have registered to receive your updates and look forward to reading them
Mel (Morden)
Dear Mel,
It’s good of you to reach out, especially as you must be going through such a range of emotions. I expect that you are stronger and more determined that you could ever have imagined to keep your boy well.
I’m more than happy to connect privately should you wish to ‘chew the fat’.
Take care of yourselves
Tim
Others just search blogs for gossip and tidbits to share with their friends.
With this in mind periodically extending your appreciation to them
for their loyalty will only help to strengthen the bond between you and them.
Hi Tim, here in Maryland USA. I am a fellow CFer and I just read your book. It was written very well and has helped my husband understand what goes on in our heads each day with CF, things I just don’t bother to say out loud. I do have one question, do you not have much trouble with your GI stuff? As a woman with CF I get so bloated that people think I am pregnant, which is very upsetting given the fact that I can’t have children and I am thin everywhere else. I was just wondering about the reasons for not saying much in the book about it. If you feel comfortable you can email me personally. Thanks for your time. P.S. My husband says your my cf twin in how we think about life. 😃
Hi Anna, lovely to hear from you and thanks for the kind sentiment re my book and how it’s been of help to you and your husband. I’m happy to be thought of as your ‘CF twin’! I don’t go into much detail about GI issues because it’s fortunately not as big an issue for me as for other CFers but I truly feel for you re your bloated appearance.
I’ll email you directly as it would be nice to be in contact…
Best wishes
Tim
Hello Tim
A number of years ago I taught an amazing young woman called Francesca, I had the privilege of greeting her in the mornings when she arrived at school often after a huge struggle to get there. She had quite the most dazzling smile, and she never failed to show it. Never once did I hear her complain regardless of her symptoms. You remind me of her grace, charm, dignity and courage. May blessings rain down on you and your beloved family.
Eileen
Dear Eileen, thanks very much for your kind message and touching sentiment. Us CFers are giants of character!
Let’s hope that Francesca is alive and kicking and winning people over with her radiance.
Best
Tim
Tim,
I listened to you today on radio 4 whilst taking my son to have his haircut. I was very moved to hear you speak as my childhood best friend sadly was beaten by cf a few years ago. He was called Nick Bavin and he would have just turned 40 in oct. I find your courage and level headed ness very humbling and I wish you every success with your book.
Best regards
Will
Hi Will,
Thanks for reaching out and sharing your story. You know better than most how horrid and tragic CF can be. I appreciate your kind words re my appearance on R4 today and the success of my book.
Best wishes
Tim
Tim nice to see you doing well with this condition but a part of me still feels you must be relatively mild compared to some who whilst doing all their treatments religiously still die at a very young age.Another thing is IVF.Do you ever regret having done it considering that if the pregnancy would never have materialized a women would never have had the chance to be a mother eg I read the success rate for ICSI in cf men are 28%.For me strictly speaking that is a unfair risk to take with a womens life as well as it coming about via unnatural means.As hard as it seems cf does go against nature(I have it myself) and many with this condition cant work properly or reproduce normally.Trying to live a natural life with a abnormal condition ultimately plays with someones elses as well though .I admire your wife though for sticking by you as I know from speaking to other cf patients for the reasons mentioned above havent
All the best
Sorry Tim just to clarify my point further from my initial post “Trying to live a natural life with a abnormal condition ultimately plays with someones elses as well though.I admire your wife though for sticking by you as I know from speaking to other cf patients for the reasons mentioned above some females haven’t and leave their partners “
Hi Mark,
I had a mix of feelings reading your comments. As I have the Delta 508 strain of CF, I don’t consider this mild. Let’s be clear – no one with CF is a winner – we all suffer! As there are over 1000 variations of the illness, it’s tricky to compare each other as you looked to do. If CF survival was only about taking meds religiously, I’d be dead 10 years ago! Taking your meds is only part of what’s needed alongside keeping your lungs active (in my case through sport and the gym), one’s daily mental approach and mindset to not letting CF define you and lastly a holistic approach to managing the illness in the form of alternative therapies.
As for the IVF and my wife, it does take a special person to cope and partner with a CFer – I didn’t always find that in some girls, but they never lasted beyond one date. I’m lucky that I found a lass who loved me despite the illness but equally I’m sure she loves me as I don’t make the illness everything in my life – it’s a necessary evil I need to manage every day in order to be a husband and father.
Hope all that makes sense. I do plan to email you separately just in case you wish to chew the fat further.
I’ll leave you with my main hope for anyone, but even more so for CFers – wishing you all the health and happiness in the world.
Tim
Hi Tim
I am doing a case study at college on physiological disorders and I am very interested in finding out more about CF. I was just wondering if I could ask you a few questions about you condition such as the diagnosis, your care pathway and care strategies
Thanks
Jade
Hi Jade,
Thanks for reaching out. I tried to email you to follow up and see how I can help you but the email for you didn’t work… Please feel free to email me at timwotton@hotmail.com
Best
Tim
Tim to clarify though with reference to one of your previous posts eg Marks there are differing strains of the condition eg people can have the same delta type but differing stains of the condition(what doctors have told me).I still feel yours must be a milder level because doing what you do eg holding a full time job etc if you was that ill you couldent hold it down and the condition would get the better of you like it has done to Cf people I knew who died it eg to much mucus in the lungs from age 2 to 15
All the best Richard aka Mark(middle name)
Hi Richard, with so many mutations and subsequent strains it is not easy to compare one CFer to another. However, I have been informed by my doctor that my double delta 508 is not a mild strain. I want to be clear that the only positive thing about CF is the outcome of the sweat test! We all have to row our own boat with this tough condition. I feel it is not that helpful to get too caught up with comparing one’s health with others.
I was unlucky to be diagnosed with CF, but ‘lucky’ that my mum diagnosed me at six months (a rarity in 1971) and then fought hard to get me medically disciplined and leave no stone unturned to find the latest medical treatments to help me. My father got me playing sport from an early age (which I still do now), which I strongly believe has differentiated my health outcome. Over 70 IV treatments over 44 years testifies that I’ve not exactly had a picnic but have learnt to manage the condition to enable my work and family life. Like you, I have lost more CF friends than I care to comment on. It is an unforgiving illness that you have to be just as relentless with.
If you would wish to discuss this further, I’d be more than happy to chew the fat over email or on the phone.
I hope you’re feeling as well as possible
Rgds
Tim
Thanks for the reply Tim but I still truly feel compared to some you are milder.Eg like a toddler I knew who died from cf at 2 or a girl aged 15.They had in the nurses and parents words “to much mucus “that no amount of treatment or IVs could prevent them from dying so young .Hence they were religious with treatment like yourself but their strain was to severe.Hence if you had their level you wouldent be here now no matter how hard you tried
Its a tough brutal world for some more than others though I accept you may not be as mild as I first thought
All the best
Richard
If I could add something. My sons are 45 and 42 and their cousin aged similarly have all gone through uni and hold down full time jobs. The youngest engages in cycling hill climbs and has done several long challenge rides including Lands End to John o’Groats. He’s just done a 65 mile Sportive today with Team CF Cyclng. Basically they all get on with life and challenge cf all the way. They have their lows but don’t let it beat them. A bit like Tim does by the sound of it. Good health to you.
Hi Tim
I found your blog through an online search about living with Cystic Fibrosis. I’m a researcher at University of Oxford , hoping to apply for funding to produce a new section of the award winning website http://www.healthtalk.org, about Cystic Fibrosis and what it’s like to live with it.
I’d like to speak to people who have the condition to find out their thoughts and ideas about my research proposal to make sure that it fully reflects the information and support needs of people with Cystic Fibrosis.
If you would be interested in helping me refine my ideas, please contact me at susan.kirkpatrick@phc.ox.ac.uk
many thanks, and best wishes
Susan
Hi Susan, thanks for your kind message and I will contact you via your email.
Best
Tim
Hi Susan, I did email you. Please let me know if you received it? Thanks
Dear Tim
I’ve recently begun working with the CF team in my finance role within the NHS. I was reminded of you (and your mum) as my mum worked with yours in Soton back in the day. As a family we were kept up to date with your progress until my mum’s death in 1994. It was with some trepidation that I googled you this afternoon and I have been thrilled to have spend the afternoon reading the inspirational articles about your writing and approach to life. I am looking forward to reading your book and wish you and yours every blessing for today, tomorrow and the future. Tim
Hello Tim, what a nice surprise it was to receive your email and trust me, no one is more delighted than me that when you googled me, you saw that I was still going.
I have spoken to my mum and she remembers your mum Mary with fondness. I hope you like my book and feel free to let as many people in the NHS know about me and how the NHS has kept me going to defy the odds!
I’ll email you separately…
Thanks once again for reaching out.
Best wishes
Tim
Hello little Timmy Wotton. Crikey! It has been years. I don’t know what made me think of you just now but here I am. I am overjoyed to know you are still fighting the good fight and an inspiration to us all. When the vaccine is in play and you are back with your family I will drag you and Chris out for a beer. Take good care old chum. Best Bowlsie
Hi Nick, great to be back in touch with you. Happy memories playing hockey with you back in the day! feel free to read my memoir which has some hockey and drinking stories!
Agree, a beer would be good down the line.
Warm wishes
Timmy