Consider your life expectancy being held in an hourglass? Now imagine that the grains of sand in your glass appear to be running out very quickly… how would you feel? What would you do differently or prioritise before your sand runs out?
I am 39 years old, married for over seven years to Katie, have a gorgeous three year old son (Felix), work full-time in London as an employee communications consultant and play regular sport, particularly hockey and tennis.
But, and it’s a big BUT… I have a life threatening condition called Cystic Fibrosis (CF) * and recently diagnosed Type 1 Diabetes. At birth, I was not expected to live much past my teens. All my life – every day – has been a battle to stay alive and keep defying the odds around my life expectancy (currently set at 38 years for CF sufferers, although for a long time it was fixed at 30).
I undertake a strict daily regime consisting of over 40 tablets, nebulisers, injections and physiotherapy just to stay as healthy as possible and live my busy life. There have been a lot of very dark, sad and fraught moments over the years and on a day-to-day basis. As you can imagine, when your longevity in this world is perpetually in doubt, it has a dramatic effect on what you do, how you think and your priorities in life. I often felt that my hourglass was running out on me.
End of the beginning
Historically, I tended to suppress all my emotions about CF and be very guarded about disclosing it to strangers. I never wanted to be viewed as the ‘ill person’ and be defined by my CF and I certainly never wanted anyone to feel sorry for me or be pitied. I played a lot of hockey (including representing England in my teens) so it felt counter-intuitive to flag any disability. However, I knew that life was likely to be short and having my own property, wife and child seemed unattainable.
For most of my life 30 seemed unachievable and 40 felt an impossible age to reach. This concern and fixation over my life expectancy was exacerbated after the sad deaths of certain CF friends leading up to my 30th Birthday. There are not too many people with CF that I know in the UK who are over 40 and it always felt inspirational when anyone reached this milestone.
But as I approach the 40 year milestone (March 2011), something has changed in me…I have flipped my mindset from a fear of dying to a desire to live for much longer as there is so much I still want to see and do.
I feel that I want to be more open with people about my condition and I now want friends to ask me how my health is going. Perhaps I want to be defined as someone who leads a normal life (job, family, sport etc) who just happens to have CF. I now view the future in a different way – welcoming each new year – and mentally project and expect a longer life with my own family to live it with.
I see reaching 40 as a celebration of my life to date and what it has taken for me to survive; but I also view it as a launch pad for the rest of my life – with my hour glass half full rather than half empty. Like a cricketer, I need to build on my 40 and push on for at least another 40! I also see it as a time of celebration for my family, friends, medical staff and complimentary therapists who have supported me and have been such a valuable part of this journey.
The countdown begins
As I look ahead to my 40th Birthday, it feels natural to also look back and reflect on the journey I’ve been on – my trials and tribulations, happy times and what it has taken for me to come this far. There’s a saying that ‘what can’t be cured, needs to be endured’ and by enduring all my life, I believe I have some extraordinary stories to share and some unique life insights. I want to share the approach I have honed over the years that keeps me alive and kicking, where CF does not define me but is just something I have to ‘get on with’ to lead my life.
Over the next few months leading up to my 40th Birthday, I am looking to share some of these experiences and enlightening life lessons. I also want to increase the general awareness and profile around CF, raising the public conscience in order to create a tidal wave of interest around the condition. Hopefully I will inspire everyone (healthy or those dealing with any long term illness) that even when you are at your lowest ebb with the odds stacked against you, that there is usually a way to overcome.
What you can do
- If you wish to comment, please make any comment below
- Do subscribe to this blog, to receive my on-going posts, by placing your email address in the box provided
- Forward the blog link to your friends and family and encourage them to do the same
Look out for future posts on my survival revelations and life lessons as I countdown to the 40 year milestone…
All the best
Tim
* Cystic Fibrosis (CF) 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
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 
Hi Tim
Happy New Year
Hope we can work together to get your message out in 2011
Rgds
Glenn
It’s great to see this up and running, Tim. A wonderful site – I hope you get much positive response and that your words spread far and wide. I’m sure with such a determined spirit, there is much more to follow. All the best for 2011 and your Countdown to 40. Speak soon, Gus.
Well done, Tim! I am delighted that you have succeeded, against all the odds. But, you know: The single most important event in your Life is your mother. She slaved over you; providing you with intense and essential chest physio at home, without which I doubt you would have beaten the hour-glass. PLUS a very positive attitude on your part. God willing, you will survive another 40 years! Incidentally, I am still trying to track down that non-needle blood sugar testing equipment for you; it is proving very elusive! Maybe, there have been unexpected issues with it: inaccuracy to name but one! Fondest regards and congratulations! Bernard & Maggie
I preach it, you live it “Attack the Day” my friend. There isn’t anyone I know (and I include the Captain) that attacks it like you do! Inspired, Arch
Wow mate, for as long as I have known you, you have been an inspiration to me. You have acheived so much and lived with so many challenges in your life beyond what I could imagine, but have always made everyone smile.
It is hard being away from the UK and I miss you as a very close friend to me and my family. Lots of love Stuart.
Amazing piece Tim i have subscribed, looking forward to your next post
Inspirational – thank you so much for sharing your thoughts like this.
That’s a really lovely picture of Katie and Felix. The blog’s also really well and concisely written – less is more! My only complaint is that there aren’t enough cricketing analogies; I’m looking forward to the next installment. Thanks for hosting me again and for the great crumpet;
Julian
You’re ****ing inspiration, dog. Obviously Ive been aware of CF and your situation for years. It’s always been taboo, and not something that we’d ever discuss ( but I knew you had an edge in certain games, in pubs, due to CF). I remember your amazing diligence, and your mum’s when it came to the hard work on your lungs with countless back ‘massages’ to help relieve your symptoms- you’re mum was amazing. The fact you could still out play me on the hockey field (as could a blind sudanese midget) and ‘socialise’ with the best of them is testimony to your mammoth cojones and outstanding will power. Remember though, one day, those cojones will eat you (Blackpool 1990). See you at 50, pal ( and before)
Hi Tim thanks v much for sending this. Great to catch up the other day. Cheers Jamie
Terrific blog, Tim. You once called me out for overlooking your struggle – I’d made some joke about living in south London. You said I of all people should have known better. You’re probably right. But It is easy when you live with disability or illness to make light of it because it makes it easy for everyone else. Easy when they don’t know what to say. When they have no idea how you might feel. You were the master at ignoring your cf at school making it easy for all of us. I hope this blog is many things. Not least one with a long life with each entry as entertaining. And I sincerely hope you make us feel a little uncomfortable. Good luck.
Now, when’s the party?
Bloody hell Timmy – that was one powerful read…
Bring on the party in March I say…
Kt xxxx
My dear Tim, you are a positive miracle that just keeps growing, Happy New Year my friend and many more too, lotsa luv Sal xxxx
Think of you all so often. Look forward to future posts and celebrating with you in March. X
Bravo Tim – great to read this – inspiring to see you facing the future with such positivity.
Im 40 in March too – so here’s wishing you well, and hopefully we can catch up for a jar as middle aged geezers in April.
(Dad says hi too)
steve
Thank you Tim for writing this; you are an inspiration.
Langers of Sydney waits with baited breath for new posts m’dear. Bravo! x
Hi Tim,
I have a 6 month old daughter. A friend of mine had a baby girl at the same time who was diagnosed with cf a few weeks after she was born. I am due to meet with my friend and his daughter tomorrow for coffee and will recommend your blog to him. I look forward to hearing more.
Timmy, this is brilliant, can’t wait for the next update x
Look forward to reading more over the coming weeks and months Tim
Hi Tim its lovely to hear how well you are doing,keep up the good work. I am a carrier and my 18yr old nephew Luke with CF died 2 days ago,we had hoped he would live to 30 but it was not meant to be.Hopefully acure is around teh corner.
all the best x
Morning Tim
I found you blog regarding your countdown to 40 absolutely inspiring and has given me an insight into what our very good friend Nick Jollyman has recently gone through. He reached is 40th in april of last year and celebrated with his twin brother and a host of friends. Unfortunately he lost his battle on 23rd Dec and the funeral is tomorrow. But true to form he has dictated that its to be a celebration and he was laughing to the end.
He will always be remembered for his generosity of time, his good humour his capacity to help others and look adversity in the eye . . . and spit on it! He was affectionately known by us as Baldrick (I of course was queenie and my husband Melchie from Blackadder). We spent many a day quoting the series and laughing till our faces hurt!!!!!
I wish you well with your life, your ambition and would like to keep in touch.
D x x
Hi Dee,
CF is harsh, but I bet Nick would have packed in more in those 40 years than most do in a lifetime!
It may not help, but I am convinced that for this level of suffering, God is already holding CF sufferers as they pass away…
Bless you
Tim
I will b passin ur blog on,my son is 3 w/cf & I hope he also adopts the ‘what cant be cured must be endured’ attitude,u fill me with hope 4 his future so thanku 4 sharin & I look 4ward 2 readin ur blog in th future 🙂 All th best 2 u & ur family… Th Hannons x
Dear Toni,
Thanks for writing in. Your son will be in good hands – be strong for him but also look to empower him to ‘own’ the condition himself – not always easy but is easier over time!
God Bless
Tim
Tim, Happy New Year to you and yours! Just opening the email for the first time this year and yours was at the top of the inbox. I have to say the blog is an inspired move on your part. I look forward to using it to stimulate me into keeping closer contact with you than I managed in 2010, and of course to learn from your life lessons. A great start to 2011…Phil
Very inspiring Blog which touched me to tears. I love your positive outlook and inspiring words and wish my teenage son would read this Blog – both my son’s have Cystic Fibrosis. My eldest son won’t talk about “it” and often tells me that he’s glad he won’t grow to be old – upsets me greatly. To him Cystic Fibrosis = early death so there is no point in trying to aspire to do anything or be anything. Best of luck with the Blog – I will be reading and promoting to help you raise awareness for Cystic Fibrosis. Regards, L x
Hi Tim,
Tina Whitehouse sent your blog through to me (I used to play for Wayfarers, hence the connection). Just to say that I got involved with CF support several years ago. I was doing some work with Incredibull.com who were/are a major supporter of CF Trust. Not sure whether you are aware, but their company was formed by Dr David Bull and his sister, Katie Bull – an ex-Wayfarer!. I attended their CF Awards dinner (televised in 2007 – maybe you were there?). I went with my sister and I recall that we were so amazed at how so CLOSE the medical world was to finding a break-through. But also that the life expectancy has extended so far – congratulations to you for your forthcoming 40th! I know that Incredibull are still actively supporting the Foundation and your message has re-ignited my interest and support.
All the best for the 2007!
Pam
Tim, it’s great to have discovered your blog. How wonderful to read of such a celebration of life. I love the image of the launchpad! I have a young relative with CF and she’s an inspiration to all of us. I found your blog through my Facebook link with the CF Trust, and I’ll definitely be sharing it – thank you in turn for sharing your story with us.
I am also a CF sufferer and will be 40 in June. Reading your article was so inspirational. I have 2 girls – one is 12 and the other one will be 2 in March. I remarried in April last year in Barbados. I have noticed over the last year that I have picked up a lot more infections than normal; does that suggest that things will now begin to go downhill? It’s a scary thought! I want to be able. To see my children grow up and what they can achieve in their lives. It is a struggle, from day to day.
I will keep up to date with this; it was extreme in that it reopened my eyes and also my desire to be here for a lot longer.
Tonia
Dear Tonia,
Life with CF is tough. Add in kids and you are at breaking point at times! But those same kids, do drive you on and set your priorities for you. To not be around on their journey through life seems too much to bear.
I do hope my blog will help you.
Stay well and God Bless
Tim
My grand daughter is 10 she has CF I hope that she can find the determination that you have to keep herself healthy as she gets older and understands how important it is.
Very insperational. I look forward to reading more 🙂
Hi Tim
Thank you for sharing your view. I am glad you took a decision for life. Life is a gift for all of us and each day well lived, lived with purpose is a whole life.
We have a 31 yo with CF, a 25 yo and 13 yo no CF, possibly carriers.
Being stubborn and refusing to accept a timeline on my son’s life probably made the difference. I used to tell people Adam had CF and sorted out friends from fakes early on. We taught him to live life to the full, he can do anything, to look after himself and to love life. Take care, God bless you and your family for all the years that make a full life.
Philomena
Dear Filomena,
Thanks for writing in. Being bullish for your CF child is important. Make them feel that most things in life are possible.
I hope my blog continues to inspire you and your family.
Bless
Tim
Long time no speak glad you are doing so well – am going to forward your blog to a friend of Steve’s who’s child was born about a year ago with CF – you’ll be an inspiration to them!
Take care – lots of love Gabby
It was good to read your count down to 40 blog. I turned 40 myself last year – although I do not have CF. My son Thomas (4 yrs old) does have CF. To date he has been fortunate enough to have been incredibly well. Whilst I understand that may not always be the case it is uplifting to read stories like yours.
I look forward to following your blog over the coming weeks.
James
Hi James,
Thanks for taking time to comment – much appreciated! It’s not going to be straight forward, but your fortitude will rub off on Thomas. I do hope my posts will continue to inspire you.
Best
Tim
Well Tim what a great inspiration you are to others with cf, I look forward to your follow up posts, I hope you are feeling as well as can be expected, all the best Mary Smith
All the luck in the world Tim, you are an inspiration. My almost 2 year old grand-daughter, Emily Grace, has CF & has just had her first hospital admission – 2 weeks over Christmas 😦
We pray for miracles every day.
Best wishes
The Stewart family in South Australia xx
Hi there,
The word ‘Grace’ will be all important for you and everyone who will be in your grand-daughter’s life. It is with grace that we take on this condition and overcome. I do hope my posts will help you have peace of mind…
Bless
Tim
Hey Tim,
Long time no see!! Fantastic to see you’re on top form for the big 40!
A very inspirational read, if only everyone in the world thought like you, we all take so much for granted. I wish you all the best, and look forward to hearing your future blogs.
What an inspiration you are to the Cf Community. My little girl is aged 3 WCF. She has so far been quite well considering but its always in my mind about life excpectancy. Your page has made me feel more positive, keep up the posts and the good work to stay fit & active for as long as possible. xxx
Dear Ellen,
Thanks for taking time to comment – much appreciated! My motivation was instilled in me by my parents – my Mum was a nurse and my Dad played sport – these together made the difference. As I get older, I have developed my ownership for the condition and motivate myself to always keep up with fit and healthy people and set my benchmark there! It’s not going to be straight forward, but your fortitude will rub off on your girl. I do hope my posts will continue to inspire you.
Best
Tim
Very inspiring to a mother of a 2 year old with CF. We fight the fight every day and he has not been hospitalized in almost a year(in March it will be a year). I consider this a victory for him. Thank you for sharing your story.
Hi there,
Thanks for taking time to comment – much appreciated! t’s not going to be straight forward, but your fortitude will rub off on your boy. I do hope my posts will continue to inspire you.
Best
Tim
HI Tim, I am looking forward to your future posts. I too am 40 this year but I am mum to 3 year old Eva who has CF. I would be very interested to learn about how you motivated yourself to keep fit both when you were younger and now long term. I would like to be able to pass your experiences, feelings and motivations to Eva as she grows up. I hope this is a wonderful year for you and long may it continue! Penny x
Hi there,
Thanks for taking time to comment – much appreciated! It is the mental approach to combat this illness that is as important as the physical approach. My motivation was instilled in me by my parents – my Mum was a nurse and my Dad played sport – these together made the difference. As I get older, I have developed my ownership for the condition and motivate myself to always keep up with fit and healthy people and set my benchmark there! It’s not going to be straight forward, but your fortitude will rub off on those around you. I do hope my posts will continue to inspire you.
Best
Tim
Mate, you must stop coming out for lunch with me and Bo. LOL
Your hanging out with the wrong crowd!
Hi Tim, You are an inspiration to us all ! Take care
what an amazing thing to do – wishing you continued health and happiness. x
Thanks Laura. Appreciate your comments
Mum to 5-month old George with CF. He has already endured so much. I want him to grow up as a normal little boy who just happens to have CF. Reading your blog has given me faith and the realisation that it can happen. Thank you.
Hi Nicola,
Thanks for taking time to comment – much appreciated! It is the mental approach to combat this illness that is as important as the physical approach. I wasn’t diagnosed till I was 6 months old, so you have a head-start – it’s not going to be straight forward, but your fortitude will rub off on those around you. I do hope my posts will continue to inspire you.
Best
Tim
Thank you for sharing your story. I am a mom of a little boy who just turned a year old who has CF. We want to raise him as a “normal” kid who just happens to have CF, just like you said. Thanks for giving us hope.
Thanks for taking time to comment – much appreciated! It sounds like you are planning for your darling son in the right way. I do hope my posts will continue to inspire you.
Best
Tim
Hello Tim
Emma Winchester passed this on to me and would love to follow your blog!
Our future daughter in law is a nurse at the Royal Brompton hosp looking after teenagers with CF-we also have friends who have a grandchild with it so we are aware of the complexities. Looking forwards to your 40th and beyond!!
Kind regards Di
Thanks for taking time to comment – much appreciated! There are a lot of synergies in our stories – it’s funny how life works in that way. I do hope my posts will continue to inspire you all.
Best
Tim
Opps forgot to say our son in law is a avid hockey player too!!
Tim, count me in. I look forward to hearing about your posts, and lets catch up for a beer soon. Your story puts all my so called “worries” into perspective
Take care
Steve,
So nice to find you here on Tim’s blog as well! I hope that we as former colleagues of Tim can continue to keep in touch with him, challenge him, drink beer and above all have fun with him. To be continued! Irene
Who would have thought you could write so well !
I am a 49 year old primary school teacher living in Belfast, Ireland (I am 50 in March!)father of two sons. Patrick, 21 and Paul, 17 who has cf. My wife, Elaine,43, was diagnosed with breast cancer in October 2001. It returned in February 2009 and she has be on chemotherapy ever since.
As you can imagine this has placed an enormous toll on all of my family. I enjoyed reading about you and hope to hear from you soon. God bless you and your family.
Hi Patrick,
Thanks for taking time to comment – much appreciated! Bless you and your family with your own struggle. I do hope my posts will give some hope for your son.
Best
Tim
You are amazing! Thank you for sharing. xxxx
Tim,
i have a son just about to turn 4 in january with CF and i just wanted you to know that since he was born i thought that i would like to have an approach and mindset for his condition which would be a constructive approach to living life with CF – a mindset for him and for his mother and me.
I think that your story above is a lesson to all people living with the condition and those supporting them. truly inspirational.
Hi Tim, Thanks for this very inspirational post. We have a 3 year old boy w/ CF and I am constantly cutting out articles that will inspire him when he is older. My printer is going with your post right now. Looking forward to seeing more. Take care and God bless.
Dear Joy,
Thanks for writing back to me. I can only hope that I keep your printer busy as you print off my blogs and that one day your boy will take some solace from them!
God Bless
Tim
Didn’t realise you could write so well. You didn’t learn that at college! Sending my love and best wishes for your special year and birthday to you, Katie and Felix. looking forward to next installment and hopefully see you all soon x x
Brilliant idea Tim. Thank you for sharing this. have tweeted a link to spread the word.
Timmy, I look forward to your updates and I hope
that your blog will help raise awareness of cf…thankyou
for sharing this, it is also beautifully written xx
Hi Tim, you’ve really touched a nerve here, thank you for sharing this it will help and inspire many people, me included. Wishing you, of course, good health and suggesting you better book a big room for your 40th birthday party because I reckon a lot of people will want to be there with you. Susan (Phil Cliffes partner)
Thank you Susan for your kind sentiment – your words will help me as I continue my journey
Bless
Tim
Hi Tim, lovely to read your blog – very inspirational! Your Mum and I have known each other since you were little and my son (with CF) will also be 40 this year (he has 1 year old twins) and my daughter (with CF) will be 37 (she has an eleven month old). The battle with CF is a relentless one but the adults with it are indomitable in their fighting spirit, courage and ability to inspire and help others. Well done for spreading the word and we wish you much health and happiness in the future!
Thank you Jill for your kind words – so pleased to hear about your son and daughter – that’s 3 lovely grandchildren to keep you busy!
Best
Tim
Tim, you continue to inspire me and my growing family.
I have known you for so long and seen how you have not only coped but dealt with admirably an overwhelming situation…….never have I seen you defeatest, sometimes low but always positive…particularly positive when propping up the bar!
During our youth you embraced your illness and didn’t allow it to ever get in the way of your intended lifestyle, whether it be hockey, socialising, more socialising, Isle of Wight holidays and the unintentional river crossings fuelled by ‘crucial brew’.
Now I see your wonderful family and realise that your strength has got you where you are today. I know it’s still tough every hour of every day for you and yet I still always see a smiling Tim when we get together.
As you know my little Millie also has a life limiting illness and we too have spent much of the past 9 years in hospital where she continues to show the same strength and balls that you have since we met as kids and I can honestly say that watching you has given me the understanding that there is always positives to enjoy and a bright future to aim for.
You’re an inspiration to us all and I look forward to following the blog, good on you!
Hi Tim
I’m Emma – the daughter of Jill (Nightall) who posted a couple of places above. I feel like I know you as your Mum’s name and yours have been part of my growing up and each year I eagerly ask for updates on how you are when the Xmas letters arrive!
Like you, I never expected to get this far (I’m 37) or to have a beautiful little boy (mine is going to be one year old in a couple of weeks!) There are not that many of us about who were born in the 1970’s with CF, but we have been priveleged to live in an amazing era of those with CF…literally seeing the life expectancy increase from 5 years to nearing 40. And with it the wonders of new treatments for CF and other developments like fertility treatment which have enabled us to achieve things that those before us could never have even imagined.
I look forward to reading your blog and getting to know you from your own writings rather than from vague Xmas updates!
Emma x
Dear Emma,
Thanks for taking time to write. I sincerley hope my forthcoming testimonies will do our struggle justice as it’s not easy to get it down on paper! I’ll do my best though.
So happy to hear that your have been blessed with a baby boy – it does give you fresh impetus to carry on fighting the good fight!
God Bless
Tim
What an inspiration ! I lost my bestfriend at the age of 21 to CF, that was 20 years ago now…she was a beautiful soul ! This March 2011 I have entered the 65km Walk-a-thon to raise much needed funds and awareness for CF, I have started walking each morning to train for the event, this gives me time to reflect and be grateful for all the things in life we so often take for granted ! It gives me time to reflect on the very special friendship I had with Donna all those years ago and an opportunity to do something to “celebrate” her life and assist those who live daily with CF…you are a Champion ! Happy 40th…
Kylie Merchant
SYDNEY, AUSTRALIA.
Dear Kylie,
I’m sure the spirit of your best friend will help you in your training and on the day itself! My wife, eldest brother, sister-in-law and other good friends have run 10K’s, half and full marathons for CF with me in mind. I always hoped that when the run was getting difficult, they could think of me (curse) and push on!!! 😉
All the best
Tim
Tim. You’re an inspiration. So glad you’ve gone wide with your experiences. So proud to call you my friend. Katie.
Hi!
Well done on approaching the big 4 0. Good to see someone putting the word out there on CF. I’ve got CF myself, not as old as you, only 32. I was just wondering a few things, what genes do you carry? What bugs have you got? Finally, did you go through ICSI to have your son? These are all medical questions, so you may not want to answer them. 😉
Anyway, good luck, keep well and keep the blog up.
Hi Tim,
I’m going to be reading your blog posts with much interest.
Thinking of you, Katie and little Felix lots xxx
Hello Tim,
Delighted to hear you are still playing hockey !
Good luck
Jim
Hi Jim,
I do my best to contribute on the pitch… I had to learn from a very early age that passing the ball gets it there quicker than running with the ball!! 🙂
Cheers
Tim
Hi Tim,
Shame I did not learn the lesson and run with the ball!
We should all take note and be inspired on how you have approached your illness, can only wish you and your family well.
All the best
Kevin
Hi Tim. I turned 40 last year and retired after 23 years in law enforcement (retired due to office closure as well as much as anything else). I have a husband and one son who is seven.
Reading your first post was like reading something I had written…. I even use the hour glass analogy – I always imagine that big one from the Wizard of Oz. On a good day there’s still tonnes of sand in it. On a bad day (recent swine flu and horrid chest infection) it has about a handful of grains left!!
I’m on the mend now so it’s nicely topped up.
Look forward to reading more!
Dear Audrey,
From one that knows the battle to another – when that sand is topped up, doesn’t life feel sweeter than anyone else (who has good health) can ever imagine. You have to get through the storms to appreciate the rainbow!
God Bless
Tim
That made me 😀 x
Hi Handsome,
Not a bad I.T job for a muppet like you 😉
But seriously, this is amazing and so god damn
inspirational ….. whoo yahh !
See you soon Timster. I’m so gonna hug you like a girl !
Tim, what a fantastic blog post, I am sure it will have a huge impact and give inspiration to everyone who has someone with CF. This is the most positive way anyone I know has approached 40. Thanks Tim I’m really proud of you for not just thinking about doing this but getting on and doing it. Also I love the photo xxx
Tim – Katie passed this onto me. Hugely inspirational. Love to you and your beautiful family.
Hi Tim, i have just read your story you sound like an amazing person and such an inspiration to others. i have an 11 month old daughter that was diagnosed at six weeks old of having cystic fibrosis. I hope and prey she is as fortunate as you. I hope you have a great birthday. It would be great to hear your next story. Louise and family.
Hi Louise,
Thanks for writing back to me. I do hope my series of blog posts can help inspire you further. Bless you and your daughter.
Best
Tim
Thanks for taking the time to reply to me, i will look out for anything new on here. Thank you very much once again. Take care.
Tim
This is great, fantastically written and I hope that it will be inspirational, encouraging and challenging to all who read and continue to follow you on this incredible count down to the big 40! I will be looking forward to each one.
God bless you!
bex
Lovely to read your blog and inspiring views. Our daughter was diagnosed with CF at 6 weeks and we were devastated. Its certainly changed all our lives, but we hope that the changes will give her the best of chances for a long and happy life, full of experiences and love. The hourglass analogy is apt, as time does feel so much more precious now, even when she’s naughty! Look forward to reading more.
Best wishes to you and your family.
Kesal x
Dear Kesal,
Thanks for your comment. The hour glass is true, but the grains for a child born with CF in 2010 will be as full as you and your daughter want them to be. It won’t be easy, but the treatments are avialable now that really offer a good quality of life!
I do hope I can do the forthcoming blogs justice.
Best
Tim
Loving your Blog Tim, really pleased that you have started to write it.
We have 24 month old daughter with CF its VERY encouraging to hear your thoughts and story… I know living with CF will be tough and every day we worry at the sound of any cough or sniffle you hear her make.
We have been lucky so far with our little ones health but as you know the pendulium can swing the wrong way at any moment. For me I worry about exposing her to ‘normal’ life ie, send her to nursey and play groups and the fear I feel at the prospect of school eventually …OMG ! Even with these fears we do let her do everything a 2 yr old should be doing… but its lovely to read your blog as it gives me more confidence with dealing with my own issues and hey I’m not the one with CF! …. I know its going to be a rough ride at times but life can be anyway! So thank you for sharing .. and keep up the good work…… Leanne x (hopefully not now considerd a nurotic mother!)
Dear Leanne,
Thanks for writing back. I do hope I can continue to help and inspire you with my on-going blogs. You mindset and fortitude can only help your lovely daughter!
God Bless
Tim
This is amazing Tim. I will pass on to as many people as possible here in Oz. You will be pleased to hear that I have been enjoying the cricket here of late. Good to see the Aussies getting spanked. I am really looking forward to reading your blogs. You are an inspiration and I have always enjoyed our time together. Many many laughs over the years and even in the hard times I never heard you complain. I wish I could come to the party. Child no. 3 will arrive at about that time, but I will definitely get to the UK this year and look forward to catching up. Great stuff mate. Charlie Lanch
Hi Tim….great Blog.Love your attitude. I hope to give you some encouragement too…I am a 65 year old American woman with CF!!!If I can make it to 65 I am sure you will make it also!! I didn’t know I had CF until 19 years ago when my nephew was born…all the family was tested and my brother and I had CF!!! He is 4 years younger than me. I had a hard time convincing my doctors that I had CF because I was too old!! All my life I was treated for asthma and sinus problems….had many hospitalizations and several times I almost didn’t make it…But here I amat 65!!!!
Dear Judy,
The bar has well and truly been set high – thanks for taking time to comment.
Keep well and fighting the good fight!
Bless
Tim
My son, Jack is 3 years old with cf. Hope he grows up with the same guts & determination that you have showed. Hope you smash the big 40 and live a longer life for you and your family…. inspirational
Hi Steve,
I do appreciate you taking time to comment. I am touched that I am inspiring you and your fortitude with Jack will move mountains – trust me! My parents supported me 100%, guided me through the risks with CF but never stopped me really going for it in life – that is important! I will touch on the power of support in a later post, which may be helpful to you.
God Bless
Tim
Hey Tim the photo is beautiful and the text is powerful – avoiding cliches + strangely uncorny (is it really you!)
It also opened my eyes considerably to what you’re living with. I know you take medicine but gees had no idea what you have to do every day. We’ll share the link with the equivalent of the NCT for English speakers in Brussels plus family etc. No pressure – you’ve got a global readership already – how very you to be so understated! LOL
Hi Tim,
I’ve arrived at last! Well done
Love mum
Hey Tim,
It is really nice to read all the comments friends, family and others leave after reading your blog. You have really touched us somewhere in our hearts. I always find it amazing when people are able to do so and I can only wish to be to write like this. I admire you for your courage, your positivism and your cynicism. You have become a dear friend in the time that we worked together and I will be happy to follow your blog… hoping that you will continue your blog after you’ve turned 40. It is a milestone for you, but it is also a new beginning; life starts at 40 (and I can tell… turning 41 in a couple of days ;-)), also for you!!! Good luck, amaze us and make us smile!!
Hi Timmy,
You are a wonderful and clever man Tim, and I am proud and honoured to be known as one of your friends. The blog is articulate and concise, though I have to admit to a little cry, though for the simple and happy reason that you have done so very, very well to cope with such a relentless illness and achieve everything you have to date.
I find it interesting that you say you now want to be more open about your illness and want people to ask you how your health is. I believe over the course of our friendship those words have usually been the first words out of my mouth……I do hope I haven’t offended you over the years!!!
You are an inspiration to us all Tim and I hope you are planning a party to remember!
Lots of love to you and the family,
Jules
Thanks Julie. I know that you always asked about my health, it was not meant to cover everyone that knows me. You certainly didn’t offend me!
You have always been so loyal over the years we have known each other – bless you.
Tim
Hi Tim, Katie forwarded this to us. The blog is a great idea and it is evident from the posts that your story has already reached and inspired people far and wide. Another achievement to add to the already long list! We look forward to reading more.
Lisa & Richard
Hi Tim,
These are inspirational words and all very uncanny as you would’nt believe how similar we are!
I’m 38 with CF and the same views as you, I have been married for 6 years and have twins aged 5.
I have worked in comms for 22 years in central London and have played hockey all my life.
Like you I did’nt ever want to talk about my illness as I did’nt want to be treated any different.
I have a feeling we may have almost crossed paths about 15 years ago “do you know a Chris Duke” Chris new a guy that had CF that played hockey and was a similar age. I really had no intrest back then, but how that has changed now I have read you blog.
You have inspired me to contact someone with CF for the first time ever!
Thank you
Hope to hear from you soon and cant wait to hear about your 40th birthday party.
Paul
Hi Paul,
I was heartened by your comment and do know of you via Chris Duke. If you don’t mind, I’ll be in touch via your email.
All the best
Tim
Really proud of you Tim……Go strong……life is definitely worth fighting for and I’m on your side 🙂 xx
Dear Tim,
From the moment your amazing mother breezed into my room in Southampton General in Sept 1980 when Emma was diagnosed with CF, you and she have been our inspiration.
You have always been such an example to us all as we follow 10 years behind you, never more so than now. Your blog is brilliant and the way you write makes compulsive reading. Many congratulations and good luck and we’ll continue to follow you every step of the way to March and well beyond. Lots of love to you , Katie and Felix. Tessa xxx
Hey Tim,
Thanks for the link. I have subscribed. Looking forward to more of your inspiring words. I agree with Julian, more cricket analogies in the following blogs are definitely in order. Keep up the courageous work and keep on leading the way for all of us.
Tim
Hi Bro,
Having read all of the comments on this site it was no suprise to see so many friends (past & present) and well-wishers saying such positive and nice things, as you are so very popular.
You have alway’s been single minded with a vision and an ambition not to be beaten or disillusioned for long when you receive setbacks and push on through and achieve things with sport,your career and your lovely family.
I already know this ‘countdown to 40’ will be a success and will build and build beyond st.paddies day (both our 40th birthday’s!)
Love always
Jez & Julie xxx
Great to see you over Christmas my friend! Recovered from your whoopin’ on Wii party by a 7 yr old?!?
You have already inspired so many people close to you Tim and no question this will push your message and inspire many, many more.
Next Yaki Soba Udon slurpy mess is on me geez!!
Darren
Hi Tim,
We never knew. Clearly you’re an inspiration that extends beyond your known circle of friends and family. Our knowledge of CF was fairly profileral, but now we’ve a much better understanding, and look forwad to the next installment. Roll on Paddy’s day.
Adie n Kate (your Northen Line buddies)
Tim, you are amazing.
Tim,
Reading your blog has really inspired me as it evidently has many others. It also goes to show how we sometimes take for granted the blessings we have.
Congratulations, and I wish you many more years of happiness.
I’ll be looking forward to your blogs from here on in.
S Gee
Looking forward to hearing about your trials and tribulations with CF – I too started thinking about how long I might live rather than when I might die when I reached 40 (I’m 42 now). Again, my parents were told I wouldn’t live to be a teenager when I was diagnosed in 1970 but I still pursued my ambitions and I still keep setting myself new goals – the latest is to run a 10k marathon but as I’ve only just started running I think I might make that a 2012 aim! I’m hoping it will improve my lung function because what I find hardest, as I get older, is the lack of energy and the way it impacts on my social life. I had to give up full-time work when I had my two boys (now 10 and 12)but managed a degree and a return to part-timenwork in recent years. How do you manage your energy levels? I have a very supportive husband who does all the drudgery on my behalf and he runs too! Do you attend a dedicated CF clinic? Aside from my family the clinic at Wythenshawe Hospital in Manchester is the other reason I have kept so well. I look forward to reading more – funnily enough I was thinking it was about time I sought out some over 40’s because I was beginning to feel decidedly isolated – so carry on the good work. Cheers.
Tim,
Lovely to read this well written blog and learn more about your condition and CF in general. Unless it touches someone you love, it’s easy to be oblivious to this and other conditions! You are a true inspiration…..but you still need to learn some good jokes!!
I look forward to keeping up to date with your blog….hope work and family are good and look forward to an after-work drink again soon 🙂
Jess xxx
Well Timmy,
It’s been a while since I’ve seen you and your lovely wife! But delighted to hear that your health remains good. As ever, you are an immense inspiration to those without a chronic illness, let alone those struggling to come to terms with disease. Keep up the awesome work on and off the pitch! Celebrate your 40th in style and hopefully see you around someday soon.
Love from, Chesh
PS – thanks Tina for forwarding this on
Hi Tim
It really is an inspiration reading your blog. I think about you from time to time and the absolute bloody mindedness you seemed to portray at Roehampton (apparently it’s a good university now), and you didn’t allow CF to get in the way of been a sporty, drinking scallywag! Do you remember I broke your black and white TV and had to buy you a new one for 5quid.
Although I knew about your condition, you were never perceived as ‘different’ by me or countless others. I remember you mainly for being brilliant at hockey and for wearing big boots!
It was only when I started working as a doctor did I really have an idea how tough you are and what you had to go through to be the character you were.
I wish you all the best for the coming year and your 40th birthday. I nearly died this year after emergency brain surgery and it has given me the opportunity to grab what life we have left on this planet and enjoy it. You have given me even more to think about.
Thank you for allowing me to read your thoughts.
Best wishes mate
Jonathan
Inspirational, moving and brilliantly written Tim.
Looking forward to reading more. Keep up the fantastic work.
Love to you all
Vicky xx
hi tim,i just read your blog and was amazed .we have been fostering a 2 yr old with cf for a year now. prior to this we had no idea what cf really entailed. we had heard of it and knew it was a serious illness but thats all. saying that we never regretted taking him. he is the most beautiful little boy ever. he was neglected for the first year and half of his life but hasnt been hospitalised since he came to us. every time he has a cold i worry and he doesnt eat really well but we are trying our best with him. he is also up for adoption but dont know whether anyone out there will take it on but the thing is, on paper it doesnt look great but if anyone spent half an hour with him theyd love him . i shall keep reading your blog it gives me inspiration .thanks anne toon
Found out about this blog from a relative of yours (the lovely Marianne B.) and am spreading word of it stateside. Your writing is refreshing and affirmational. We should all be half so positive in our attitude about being on the planet. And CF belongs in the public spotlight to promote continuing research and to connect those who can benefit from supporting each other.
I watched a friend’s daughter slowly succumb to CF at age 8 probably 45 years ago when regimens were less advanced, and I think her family was probably spending well over 50% of their income trying to keep her with them and happy while she was. I can still recall being in their apartment during one rough episode.
Meanwhile, telling you that you grasp the concept of the life in your years meaning as much as the years in your life is simply sending coals to Newcastle from Salt Lake City, Utah (where this is coming from). And hope many over this way pick up your spirit.
As I age (I’m 66), I too hope for many more enriching experiences, but savor the full life I’ve already had, which also involved managing long-term (non-life-threatening) disability and eventual partial recovery. I’ve written a poem on the topic that deals with this which I won’t inflict on your comment section, but would be happy to pass along for your perusal if there’s an e-mail channel to send it and you’d like to see it.
Tim,
I have known you for a number of years, always friendly hello and g’day. The guys in my team always speak highly of you….”nice guy”, “always friendly”, “always positive”….Then Dan Tillet shares you blog with me; you are one strong bloke! Am so glad I read it and saw it.
Left me in awe and inspired..and I will certainly ask you about your health. I salut you!
Danny
Hey Buddy – Just read your blog, You truly are an amazing person, the man upstairs broke the cast when making you. I will be there to toast you on the BIG day!
hi tim,
my sisters new born of only 3 weeks has just been diagnosed with cf and as you mentioned myself and my family had never really heard of the disease hence to say its been a very upsetting shock to the system, i decided to look on the internet for imformation and if im honest the future really looked daunting until i read your article its lifted my spirits so thankyou, obviously me and my family still have alot to learn about the disease and know its not going to be easy, but its reassuring to read some positive imformation by somebody with first hand experience, many thanks simon smith
Hi Simon,
It’s obviously made an impact on you that you are looking online for info on behalf of your sister. I do hope my blog can give you all continued peace of mind as you get used to managing CF.
All the best
Tim
Hi Tim,
Wow! Thank you for making this amazing gift to your family and friends. I feel honored to read it… and honored to be your friend. I am looking forward to toasting to your birthday in March (17th right?) and to reading the blog. It’s always been lovely to see you and soak up some of your sunny attitude. Love to Katie and Felix.
Sharyn (in New York)
Those are some brave words, my friend – especially from someone who prided himself in putting up two fingers to the disease and not playing the sympathy card.
I remain in awe of your determination – your attitude deserves to inspire.
Jeremy
After reading your first and second blogs, we want you to know, as your parents, how proud we are of you.What is so heart warming for me is to read the replies from so many of your friends, many of whom I know. We’ve always been aware of your huge circle of loyal friends, but your Uni friends deserve a mention– they always came to visit you during each vacation when you endured more IVs to get through the next term. They slept on our dining room floor but they never failed to visit you.
To readers new to Cf, there is an element of luck depending on which mutation is inherited, some much more complicated in outcome than others but as important is the Cf patient’s attitude to the disease, use your lungs in sport or playing a wind instrument and never give up on daily treatments. When Tim was a teenager, we were doing his morning IVs (parents, if you can, have the courage to learn to do IVs at home to escape all those hospital bugs), his brothers were out with friends and without looking for sympathy he said “If only for one day I could be like everyone else” and then immediately changed the subject to make me laugh. His second blog 20+ years on focuses on just that.
You have caused me many tears and brought much happiness. especially when you achieved your degree and later married Katie but something even more important, giving us our darling grandson Felix AND giving hope and inspiration to so many others in the UK and abroad.
much love Mumx
Hi Margaret,
I feel awful that I have burdened Tim with my worries without properly reading your wonderful message and invaluable advice for CF sufferers. I have tried to encourage Nikita in sport, booking a badminton court in our local health club but sport is not her passion, fashion, yes! The wonderful staff at the Brompton hospital have been so supportive, suggesting many activities for Nikita. We all know what is best for her but if she is not motivated by us, what next? All the very best to you all. Kindest Regards, Lisa Adams.
My daughter is 5 and has CF. Seeing a blog like this, and hearing the story you’re telling, helps me wrap my head around the enormous reality that my life expectancy as a non-CF patient is longer than my daughters. You’re giving me hope, and I appreciate it. I shall indeed subscribe.
Hi Dan,
I would expect your daughter to benefit immensly from gene therapy medication which are closer than they have ever been. Keep healthy together and she can have a full and happy life.
God Bless
Tim
I’m banking on it!
Hi all
I’m Tim’s older bro. The lucky one. I didn’t get CF. Over the next few months I’m going to add to this blog giving people, perhaps, a different insight into Tim and who he’s fought the CF condition all his life.
I’m proud of him. Jez is proud of him, and I know mum and dad are proud of him. I think everyone who knows Tim and what he’s gone through is proud of him.
You really wouldn’t believe what someone with CF has to endure on a daily basis unless you live with them. So my first proper entry will be about the early days – growing up with the tough little sod.
Keep posting
Chris Wotton
Hey Tim,
Julian wanted more cricket analogies, so never mind this 40+40 malarkey; I’m thinking more Daddy Hundred!
I’ve said it to you before in quieter, sober moments mate, and I’ll say it again. You’re a legend, an inspiration. Here I am on a Sunday night fretting about the budget at work… Tsch.
Tim, I am a friend of Marianne.. I just read your blog, and my eyes welled-up. ( I am a bit embarassed now as I am in the office) I just want to say that your courage, your determination, and the hope that you bring to other people is so so inspiring at a time when the whole world seems like it is on a brink of a global nervous breakdown. I enjoyed reading, and will continue reading until you wish yourself a Happy Birthday!
You have a beautiful family. Keep writing.. we are all here listening. Blessings to you, and keep the faith… Love, Riza
Dear Riza,
Thank you for taking time out to comment on my blog – it is much appreciated!
I’m glad you are all listening – it spurs me on to keep pouring out my heart!
Bless you
Tim
Recently I had been wondering why I bother even using the internet. Now I realize the power of this medium. This is the most inspiring piece of writing I have ever read.
I met Tim (and other Wottons), many years ago and probably, like many people, never knew anything about CF, let alone Tim having it. What I did discover was how happy and hilarious Tim is.
This insight into your life and inner-most thoughts is inspirational for anybody affected by this condition or similar, but also to those of us lucky enough to not have such difficulties. If I can live my life and bring up my family with a tenth of this positivity I will consider myself as successful.
You may not want people’s pity Tim, but from me at least, you may have to get used to a little admiration. I send to you and your family the very best of heartfelt wishes.
Joe
Hi Tim,
Sam Oxley kindly forwarded your blog to me. She is so thoughtful. Sam remembered your story is very close to my heart. My 19 year old niece, Nikita, has CF. Nikita was diagnosed at one years old. There is not a moment that goes by when I do not think, ‘what can we do to encourage her to maintain her physiotherapy’. Nikita has been with the wonderful Brompton Hospital since she was diagnosed. She has seen so many consultants and recently, psychologists, who all remind her that she has to help herself. I cannot stand back and watch her deteriorate. Nikita is a beautiful and fun loving girl. Naturally she just wants to party and her health, I feel, is last on her list of ‘things to do’. Marie, her mum, my twin sister, is exhausted. I feel a great big arm has been put around me reading about you Tim. I just don’t know where to turn. I have just read Dee Evans blog and I cannot stop crying! Kind Regards, Lisa.
This is very interesting. I actually enjoy your writing style and your word choice more than anything Smile..
Hi Tim!
Thanks for your inspiring post. I have to boys with CF ages 4 and 2 in March and we live our life not thinking about the life expectancy of 38 but hoping that they will live to be senior citizens someday. I hope as they grow, they will have the same outlook that you do – that they can accomplish anything. I look forward to hearing more of your insights and history!
Dear Rachel,
Thanks for taking time to comment. You are right not to focus on the life expectancy too much and live each day as it comes. I’m sure your mindset and fortitude will rub off on your boys!
Bless
Tim
Hi Tim,
I feel so stupid not having responded sooner but it has taken us a week to think of the right words to say and even now this seems inadequate, especially as having read through the blog the overall admiration for you and Katie. I feel honoured that you have included us in your blog. It is a testament to you that Lizzie & I had no idea that you have CF.
Lizzie and I would love to meet up with you guys again soon or come down to Weston anytime. Congratulations on your soon approaching 40th.
Lots of Love
Chris & Liz x
Dear Chris and Liz,
Thanks for your kind words. Sorry to shock you and I’d rather tell you face to face.
Let’s hook up soon
All our love
Tim
Hi Tim,
I’ve just re-read this post after our phone call today. It was lovely to hear from you out of the blue – what a great surprise. I’ve known you now for about 22 years; since university days. Wow, that’s more years gone by than the age we were when we first met. That you’ve endured, indeed managed your CF (and now T1 diabetes) in that time is a testament to your quiet fortitude and determination. As you know my Mum’s a Type 1 diabetic who was diagnosed at 17. She’s 65 now. Despite dark days when she nearly went blind and almost lost a foot she bears it all steadfastly and with humour. She’s never let it stop her from living a full life. You’re cut from the same cloth. I love you old friend and admire you too. Keep spreading your life-affirming message – there are many, myself included, who take much encouragement from it. Ben x
Lovely lovely Timmy. I read your blog a week or two back when I was trying to do three things at the same time. Just sat down to read it again, after your request to help with press coverage and felt crap that I hadn’t commented on it before.
I have known you for 24 years now, and you are one of the most impressive people I know, and one of the truest friends I have (certainly a much better friend than me!). You manage to combine a love of crap jokes (really – they are the most dreadful jokes I have ever heard – every single one of them) with a complete intolerance for any self-deluding bullshit.
From your “amusing” efforts to distract me in history lessons and a friendship fueled largely by booze and japery, through uncomfortable years when I worried that you were hitting the self-destruct button (and was probably right boring old nag), we have reached a stage where not only do we have a comfy old spouse and children social life, but you are now my go-to guy for uncomfortable truths. That might not sound like a big deal, but there are very few friends who will give you an honest opinion.
Whether that comes from living with CF or not, it is one of the many reasons that I am very proud to call you my friend. Others include your loyalty, and – despite, or perhaps because of your crap jokes – your sense of humour. Basically you’re fab, and I want you around for at least another 40!
Cracking picture of you, Katie and Felix, by the way
This is a very serious condition that seemed to, as with one of my friends with sickle cell, really make you value the gift of life. We all could do well by following your kind of example and your comments are so poignant and resounding in a time when people get so wrapped up in such menial things. I hope your message about CF and how to value life are received by a wide audience, because we can only guess as to the positive effect it might have on people and on understanding CF itself. My fullest respect to you Tim. My best, PJ.
(Personal comment: when you went baseline at college I couldn’t believe you were white – let alone that you had CF to cope with! See you and Felix very soon and regards to Katie – Ruhena is already telling me off that you’re not bringing her!).
Here is a message from your dear ol’ Dad,
I’ve just read your latest blog aimed at those who do and do not suffer from CF, and all your many friends who have been fascinated by what you have written so far. You are so clever to cover a different theme each week designed to give everyone plenty of food for thought. Your Mum and I know from having witnessed your life for the last almost 40 years that life has been very tough at times but you have always battled through the hard times, not least the many home IV treatments and your indomitable spirit gets you through. I know you have “kicked your mother in the ribs” many times when you have got very low but you had to get your feelings off your chest along with all the muck that Cf produces!
You have explained what it is like to live with CF to those who have no idea and provided encouragement to those who have Cf to find the will, hard though it often is, to achieve what is thought to be the impossible. Probably one of the hardest and proudest moments for us was waving you off at Gatwick when you represented England in the U15 team in Germany where you had to cope with unexpected tropical temperatures. Providing private physio times with your team around you was so difficult and you arrived home with a very bubbly chest. All you could say as you held your bronze medal was “how much longer have I got to live”? What a lesson to make you realise there must never be a let up in treatment.
God bless you, my son, you are a star. I, along with everyone else who knows you, love you very much,
Dadxx
Hi Tim
Just checking in to say hello, and hope all is well with you. I just read your Dad’s entry. It is so touching, and I must say you are both so lucky to have each other.
I have a nephew who was diagnosed with Pompei when he was 7 ( i think). They said he would have 2 years to live, 5 if he was lucky. It’s been 20 years since his doctors predicted that. He also has a blog, and perhaps you want to take a look:
http://www.fightpompe.com/
It is stories such as yours and Juan that make me really believe there is a God out there. Keep the faith !!!
Stay strong, Riza
Hello Tim, I would never have guessed that you have such a major illness and be the person that you are on the outside, this happy chappy who just gets on with enjoying life the best you can without the illness being the main focus of your life. When I see you at the bus stop I have no idea that you have just downed the best part of 40 pills and injections that in itself is a feat doing it day in day out.
I have to take my hat to you mate, that you remain so positive and that you have come to terms with it and that you can so open about it, and it means a lot that you would count me close enough that you would share this with me.
On the positive side it must help you be so focused in what you do and making everything that you do count which is very apparent when we have our chats on the bus. You’re a lucky guy to have such a loving and support family around you and friends that really care of which I am one.
Stay positive Tim until the next time at the bus stop take care.
Simon
Hi Tim
I just read your article in the Guardian. Have you read Atul Gawande’s book : Better? He is a practicing surgeon in America, and he also writes for the New Yorker magazine. In this book he includes a whole chapter on CF and on doctors specialised in it in the US, one of whom has patients living to pensionable ages.
Wishing you all the best,
Emma
Hi Emma,
Thanks for the steer re Gwande and his book and I’ve since contacted him.
Best
Tim
Hi Tim! My name is Lea and I am mama to gorgeous 9 year old who happens to CF. I loved your post, both honest and inspiring and look forward to more as you countdown to the BIG 4OHHHHHHHHHHHHHH! Health and happiness to you and your little family.
Lea, Australia
Dear Lea in Oz,
Thanks for taking time to comment and I’m so glad you got something from my words and hope your 9 year old will always just ‘happen to have CF’ rather than it defining them!
God Bless
Tim
Hi Tim,
I just read your article in the Guardian so obviously one of your desires (of raising more awareness about CF) is already bearing fruit. I knew a little bit about this disease but not a great deal and it is great to learn more about it and to hear a bit about your story. Thank you for your bravery in ‘coming out’ and becoming a voice for others with this illness.
A lot of the above comments are obviously from your family and friends and you seem like a lovely and very loved bloke. I wish you many many more years to share all the things you love with the people around you.
Best wishes,
Holly
Hi Holly,
That was such a lovely comment and I’m touched you liked the article so much and know a bit more about this condition that is under so many people’s radar.
Best
Tim
Very best wishes to you.
The Guardian slot is invaluable to broaden public knowledge – well done – I hope other media picks this up. Good to see the strong family unit from baby son to becoming a husband and a dad. Clearly the values instilled in you are being instilled in others – keep the inspiration coming. See you soon.
My best
PJ
Just wanted to say congratulations, far too often I worry abouth whether of not my 5 year old who has CF will reach such a wonderful age and have a family etc. so to have someone like you to aspir to is wonderfull. Hope you have a truly wonderful birthday and heres to so many more to come. Thank you for your words of encouragement because if you have realised it or not you have touched lives and given inspiration and encouragement. Thank you x
Dear Kirsty,
Bless you for sincerity and kind sentiment. It’s taken a long time for me to ready to tell my story and I am gratified that my experiences are of help to others.
God Bless
Tim
Just wanted to wish you a happy 40th 🙂
My 16 year old wcf was admitted into hospital again yesterday…one of them things that you all manage to deal with so well…..reading stories like yours gives us all encouragement and hope……thankyou for sharing your story. xxx
Thanks Lyn,
Sorry to hear that your 16 year old was admitted yesterday… it’s such a tough time during IV’s. I have lost count of how many I had and my arms show you all you need to know. It’s the mental battle during IV’s that I struggled with the most as you do feel like the ‘sick child’ with an IV line in and a body sloshed with heavy drugs.
Do send your child my best…
God Bless
Tim
Hi Tim,
It’s been a while since I’ve seen you, keep flying the flag. Celebrate your 40th in style and hopefully see you around someday soon.
Keith George
Wanted to say something profound but have no words, I am deeply inspired to by you, a friend decided to stop is daily battle with CF in 2009, I will be cycling across the USA in March this year to raise funds for the CF Holiday Fund.
Hi Tony,
Such tragic news re your friend – I hope his spirit is with you on your cycling tour.
Not sure if it helps, but I’m convinced that after a life of battling CF, God is already holding their hand as they pass away…
God Bless
Tim
Dear Tim,
Thankyou for putting your blog up.
I do not know anyone with CF or have any children with it, but I do not need to, to have read your inspirational story (Guardian)
I also read your parents’ blog – They must be amazing people in their own right.
It is important that ‘everyone’ knows what cf is about and that we are all more educated, whether for a supporting role or any other.
I loved your words of ‘owning’ what you have and I think many people could do with reading your story just to remind themselves how fortunate they are being that there are far too many ‘self indulgent’ people in the world.
Thank you again,
Best wishes
Rachel
Dear Rachel,
Everything you say completely resonates with me and I appreciate you taking time to share your feelings.
Sometimes I see in others their inability to appreciate what they do have rather than what they don’t (not always easy I know). Indeed, I am often more thankful than people I meet who take their health for granted when on paper I have less to be thankful for…
Best
Tim
Tim your my hope for my daughter Ruby with CF. Well done for getting to where you are today I wish you a very very happy 40th birthday. Thank you for sharing you story, Pete & family.
Hi Pete,
Thanks for your kind words and I wish the best for your daughter and I’m sure that you will be there for her when needed but also allow her the freedom to ‘own’ CF when at the right times. Not an easy balance I know…
Best
Tim
You are an inspiration and I wish you and your family all the best for the future. X
Hi Tim,
Thanks for sharing your experience of living with CF with the rest of us….you’re an inspiration 🙂
My youngest daughter Sophie is approaching 3 yrs old on 28th Feb, she was diagnosed with CF at 3 weeks old. Whilst the diagnosis (and resulting prognosis) was devastating, we have had no choice but come to terms with the condition and huge amount of medication Sophie has to take.
As a proud parent of 2 beautiful daughters, i have 2 wishes – good health and happiness. Let’s hope research into CF will improve the prognosis for all affecting by this chronic condition.
Keep up the good work (and stay well)….thanks again for the encouragement and believe that your article (and more importantly your life :-)) has given me…and our families,
Kind regards
Nige
Hi Nige,
I am overwhelmed by your kind words and touched that my words and story are of help. It will be a long journey but with your fortitude, Sophie will be fit and well and enjoy life to the full…
All the best
Tim
Tim,
Just read your story, like my good friend Pete Moorhouse and his daughter Ruby (5 year old CF sufferer) you are an inspiration to all CF sufferers.
God Bless you and your family, enjoy your 40th Birthday!!
Shaun Nicholas.
Hi Tim,
Reading this and the guardian gives me hope for my Ruby (with CF). I think everything that I would say has been so the only thing left to say is have a great 40th birthday.
Thank you for inspiration.
Pete & family
Hi Tim,
Unlike most respondents I don’t have a direct personal interest in CF or friendship with yourself. But having read your very moving article in the Guardian I found it – to use the word that recurs in so many comments – inspiring. Reading the blog and other comments underlines that. So keep up the good work in all senses. And (since someone wanted more cricket analogies) take a fresh guard next month and start the next part of the innings. Best wishes to you and your family. Trevor Field
I am so glad you said that, for us Ruby has to live her own life while we are there for her we don’t want her wrapped in cotton wool.
I hope you don’t mind but Shaun (good friend) and i are cycle to Paris to raise money for CF this year, on our blog page i have posted a link to the Guardian, simply because it should be read by everone..
Thanks
Pete.
Hi Tim,
Jo and I loved the Guardian article this week as did my Mum and Dad. Has Felix got his hands on a hockey stick yet?
Spuds summer beer gathering methinks.
Tom x
Doctor Eeevil
Was an immense pleasure to bump into you this week after all these years. Look forward to catching up properly soon. Keep playing with your head up mate.
Big love
Soma
hello Tim,
I have been following your blog and just read your article on line in the Guardian. I think it is amazing that you have done this, as it has obviously touched and inspired so many people, including myself. The photos of you with Katie and Felix are gorgeous, really lovely. We are looking forward to celebrating your birthday with you when you come and stay with us in March, the children are really exciting about Felix coming.
Lots of love from Isobel and family x
Love your blog. My girlfriend Lizzie has cf and she astounds me every day. Will keep reading. Take care.
Hi Paul,
Thanks for your feedback and I hope both Lizzie and you find some help and hope from my story and on-going blog posts.
Best
Tim
Hello Tim,
My name’s Jess and my partner Ash and I live in Australia, with our 8 month old daughter Tayla who has CF. Your blog is very inspirational and gives me more hope for my little girl. I will make sure that we make her life the best life possible for her.
Keep up the fantastic work and look forward to reading more about your future endeavours with CF.
Cheers.
Dear Jess,
Thanks for taking time to comment. It’s still very early stages in Tayla’s life but if she has to have this condition, I’d like to think that medical advancements, like gene therapy, will have a dramatic effect on her well-being. Keep her as well as possible – be her medical moral compass – and you will have a lifetime together…
God Bless
Tim
Fabulous, inspiring article. I could relate very well to what you said – from not talking about it much, to realizing you need to get the word out there – from being afraid of early death to mustering up the strength to give everything you have to battle this disease. And everything in between. Thank you for sharing your story, from one CFer (who just turned 40 on January 1 and had a HUGE celebration! woo hoo!) to another. I celebrate your countdown with you from across the pond. 🙂
Dear Jen,
Thanks for commenting and congrats in getting to this significant milestone ahead of me! I’m so glad you can identify with my story and inner thoughts – it means a lot! Keep reading and take good care of yourself (across the pond)!
Best
Tim
While I have no personal experience with CF, my soon to be 3 year old daughter has cerebral palsy. I am collecting inspirational stories for her for when she’s older and yours will be among them. I want her to challenge every aspect of her disability as you have done with your condition. I hope you have many, many years ahead of you in which to share your wisdom and courage. From a fellow March hare, I wish you all the best,
Charlotte Jones
Dear Charlotte,
Thanks for sharing your testimony and I sincerely hope your daughter has a long, happy and fulfilling life.
God Bless
Tim
Hi Timmy,
I can’t believe it’s taken me almost three months to contribute to such a worthy blog.
It’s only very recently that I’ve come to understand the full extent of your struggle, and am in awe of the way in which you have just “got on with it” over the years.
You been a great team-mate on the hockey pitch and someone I’ve always enjoyed a pint with in the pub afterwards.
Jacko.
Looking forward to reading more!
Love,
Sarvi
hi timmy,
I think this blog is an inspiration to everybody who reads it. Although I have only known you for a matter of months, I am amazed by the way you make sure you do the things you want to do.
Although I understand how CF can affect people in day to day life, reading this blog has made me think much more about the way in which you can live your life the way you want and I hope I will remember it in my future training so I can pass on what you have achieved to others I meet with CF.
Playing hockey with you has been great fun and long may it continue with many more pints at the duke!
Martin
Hi Tim,
We can only be inspired by your determination to win the battle, wish you and your family well.
The personal battles you faced, puts life in to perspective.
Great to see you still manage to play hockey, even with the problems you face.
Regards
Kevin
Hi Kevin,
Thanks for writing in – much appreciated. It would have been all too easy to pack in hockey many years ago, but the talent I have for it has helped me stick at it and hence keep my health better than expected.
See you soon I hope
Tim
Tim,
Absolutely brillant mate. Just spent the last 1/2 hour reading all the posts with a small tear in my eye. Not the best thing to do in an office full of builders. Here’s to “the sonning seven”, being 40, hockey, beer and seeing you soon.
Batch.
Batch my dear fellow – The ‘Sonning seven’ ride on… Thanks for your kind comments and I’ll see you soon
Tim
Morning Tim –
This is Tim Gibbons ~ Simon’s brother. I’ve known your folks for ever, Dougie even taught me to swim, as a kid! I saw them recently & I know Doug’s not in such great shape, at the mo but your mum’s Superwoman, so she’ll straighten him out.
I’ve heard a lot about you, down the years but our paths haven’t really crossed – mine is “beer hockey”, at best, and that’s being very, very kind. I’ve seen ‘Reedy’ a fair bit through the likes of Tubby, Jacko & Arch. And it’s Arch who prompted this message – I’ve just spent seen him over in France (it’s great when your taxi driver keeps you up till 2am, before the off, drinking cheap red wine!!) He was telling me about his mad bike ride. That led me into reading your stuff on the web. Simon & I’ll be sponsoring Julian, of course but I just wanted to say “Hi” and wish you good luck. I know you’re planning some kind of hockey game in May, so I hope to see you then. Cheers for now! Tim Gibbons.
Thanks Tim – I remember you very well from my early Trojans hockey days! Bless you for commenting and I’ll see you soon.
Best
Tim
Tim
Being Oirish always going to be the last to reply to your blog….! Bit like your pre match routine, always the last to be on the pitch…
Alot has been said already including memories, emotions, awareness of CF, humour, but the bottom line is your own determination to live…never be afraid to celebrate and look forward rather than delve into the past. You have achieved more than most I can think of, and look forward to receiving an invite to play for your team V Eds and lets raise some funds for CF?
Memories of your ‘talcum’ powder post match routine with Simon Lambert, clubbing in Sancerre, your parrot friend in Blois, er and trashing a GTi will of course stay with me, including the mobile fridge for your medicine. It is great that you feel more comfortable about CF and this blog is testament to your own strength and determination but maybe add/link to a facebook page?
Look forward to the countdown to 45, 50, 55, 60, 70, 75
TTFN
Edward
I read an article in a national over the weekend and thought I would check out your blog as the article struck such a resounding chord with me.
I have CF and diabetes. Each year I too look forward to my birthday too – every one is a bonus and a milestone and in November this year I am going to be 46.
A lot of your life experiences and attitudes resonate closely to my own. I manage my health to ensure that I live life to the full (between work and hospital admissions etc lol). I believe in the power of ‘can do’ and positive thinking.
Happy 40th …. start planning your 50th, I wish you and your family every happiness and health.
Kaz
Hi Kaz,
So good to hear from you and you are a beacon of light for me on my passage. The power of ‘can do’ instead of ‘I don’t want’ should never be underestimated! I’ll be in touch…
Stay well
Tim
Hi Tim
Left it late – but better ‘late’ than never to give thanks to you, for :
(a) opening up your heart and baring your soul to all us that know you
(b) for sharing with us those things that have been kept silent and sacred
(c) for being so strong and lively and very much loved; as you are
(d) your support, your kindness, your generosity through thee years has been a strength to me and makes me proud of being a part of your life
Your blog has ‘moved’ me, partially making me feel sad but most of all for giving all of us (especially me) hope that there is life beyond the rainbow and life is what one makes of it.
Take it easy friend, step forward with care but with cheerfulness – keep smiling; you’ve got a loving family – both in London and in Hants – and those of us whoi from afra take inspiration form you and your life.
hugh
Tim, congratulations on your wonderful attitude, its a lesson to us all and we should think again when we think things are a bit tough. I thought your piece was enlightening and look forward to reading about you reaching the next milestone, congratulations.
Thanks for your kind sentiment Peter – much appreciated! It’s not always being positive but I’m glad that shone through for you.
Keep reading the blog posts.
Best
Tim
Thankyou for sharing your story we have a 15 year old with cf and your story has given me hope that he will be able to live as normal a life as possible in the future and I know its late but happy birthday and all the best for your future
Hi Brett,
Thanks for taking time to comment and I’m touched you have got something from my story blog.
Send my best to your 15 yr old and to you all for your on-going battle.
All the best
Tim
Tim, I just came across your blog, and I have just one word for you:
Woo-HOO!!!!!
Despite the huge challenges of dealing with CF, you’re obviously a person of enormous personal power. Kathie and Felix – and the rest of us – are lucky to have you as an example in our lives.
Kathleen
Dear Kathleen,
What kind words – thanks so very much – I feel blessed by your warmth. I’m so glad my story and words have meant so much to you.
God Bless
Tim
Tim, a great blog, I have been chatting to your friend Darren who is doing the Great South Run for CF, Keep enjoying your new decade of fun!
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You are a truly inspirational person and spirit. Thank you for sharing your journey and having the courage and strength to do so. By this you are helping so many others and generating much more awareness of CF.
BTW, I’m reading the diving-bell and the butterfly, am absorbed in it. Thank you for recommending it.
Dear Stellina, Thank you for your kind words and lovely insight around the power of sharing. Much appreciated and I’m glad you are enjoying the book. Maybe one day, it will be my book that you read!
All the best
Tim
Hello There. I found your blog using msn. This is a very neatly written article.
I will make sure to bookmark it and return to read extra of your useful info.
Thank you for the post. I will certainly comeback.
My son is 18 he is very depressed and has had a really bad year following multivarians capacia he believes he will not have a normal life. When he is feeling better I will get him to read this it will help him I think to be more positive x thanks for sharing your life
Hi Denise,
Thanks for reaching out and I’m sorry to hear that your son is having such a tough time. I’ve had hundreds of similar ups and downs – the lows feel like there’s no way back and the highs feel enchantingly sweet. Remind your boy that there’s usually a way to overcome each low period and getting through it builds your ability to keep fighting on.
If you haven’t done so already, please view all my posts on the right hand side of the blog – there might be some words that can resonate with your son.
I’m willing to contact him directly if that helps – just ask…
Kind Rgds
Tim
Hi Tim, I just read your article posted in 2011 and it is now 2016. I’m just wondering how you’re doing? My friends daughter was just diagnosed with CF. It was so uplifting reading your article!
Thank you,
Deb 😃
Hi Deb
Good to hear from you – better late than never! 😀
I’m doing pretty well thanks. Since my 1st blog I’ve published my survival memoir and won an award for it!
Please introduce my story to your friend with the CF child.
Best wishes
Tim
Fantastic Tim, keep positive and live life to the full.
My daughter Charlotte (18) has CF, like yourself a keep fit fanatic, she ran the Liverpool half marathon in 1.52mins. If she was to ever read your article , I’m sure she would feel inspired.
All the best mate
Peter 👍🏻
Thanks very much Peter for the kind sentiment re my blog. Do please send Charlotte my best wishes and tell her to never stop exercising her CF lungs! As well as my blog, you both maybe interested in my CF survival book ‘How have I cheated death?’ ??
Best wishes
Tim