Never Stop

Winning my book award at People's Book Prize

Winning my book award at People’s Book Prize

An eventful last month and cystic fibrosis (CF)* week in the UK can be summed up by two words: NEVER STOP

Never stop forgetting those dear CF friends and acquaintances that have sadly passed away from this relentless condition. Recently over the course of three days I learned of the deaths of four CFers. One was my mid-50’s mentor and fellow author Richie Keane from New York, who I had exchanged a lot with on social media.

– It’s funny how life works. When I was sitting in London’s Embankment Gardens thinking about the sad loss of Richie Keane, Neil Tennant of the Pet Shop Boys walked past! I greeted him, we shook hands. I told him he was a star and he said “Thank you. So are you!”

Never stop improving the awareness and understanding of the general public about CF: the daily medical regime required to defy an early demise and the appreciation that despite this incessant condition, CFers can and do lead full lives and make a difference.

– CFer Bianca Nicholas from the group Electro Velvet sung her heart out for England in the Eurovision Song Contest, Nick Talbot has bravely taken on Mount Everest twice and Richard Eagles is about to go to Ecuador with other transplant recipients to climb Cotopaxi, one of the highest volcanos in the world, as part of an amazing adventure called ‘Climbing for my Donor’.

Never stop developing new medicines to make a step-change in our health and survival chances. Vertex are bringing to market the new combination drug ‘Orkambi’ (I want the job of coming up with drug names – I can do better than ‘Orkambi’ – sounds like’s Bambi’s cousin!) which will benefit 50% of CFers with the double Delta 508 mutation (if it’s funded – hint hint) and the UK Consortium are making good progress with their on-going gene therapy trials. Pharmaceuticals must never stop until CF stands for Cure Found!

Never stop connecting and engaging with each other on social media. Due to the risks of cross-infection, we CFers have been advised not to see each other face-to-face, which can make it a very lonely illness to combat. CF Week in the UK 6-13 June has the ‘Power of Us’ theme which encourages the CF community to share their stories.

Never stop my utter commitment to the daily medical regime, regular exercise, sport & gym sessions and topping up my cup of positivity.

Never stop sharing experiences, life lessons and knowledge on surviving CF, as I have done with this blog and also with my memoir ‘How have I cheated death?’ and recent US podcast explaining the rollercoaster ride which Katie and I endured to become proud parents to our son Felix.

– I’m now an award winning author – my book won the ‘Best Achievement’ award at the UK’s People’s Book Prize in late May, televised by Sky News. (Go to 20:00 to see my winning speech)
My podcast with CF legend Jerry Cahill about my survival and being a dad with CF.

And finally, never stop celebrating and maximising each and every new day that we’re given with our friends and family.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.

Tim
Tim Wotton (CF author)

Find out more about CF Week in the UK.

Find out more about Richard Eagles’ ‘Climbing for my Donor’ adventure and if you can help with his funding; a huge thank you!

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 6 Comments

A love worth giving

Sam board
I want to publicise a documentary about a tragedy that could affect any of us… the need for transplant organs to help conditions like my cystic fibrosis (CF)*…

‘A Love Worth Giving’ tells the extraordinary story of newly-married Sam and Luke, a couple madly in love. Sam has CF and her health is getting worse, her only hope of survival is a double lung transplant. (Poignantly, you can see what Sam desperately wanted as she wrote it on her board at home: ‘Please God, Come on Lungs!’)…

Together they build a life around the physical and emotional challenges of waiting for a donor, a roller coaster journey of false alarms and hospital stays. One night, Sam was called to the hospital as a pair of lungs had become available but unfortunately they found out that the organs weren’t viable and the next morning, they were sent home.

Everyone thought Sam would get a transplant, especially Luke. But the pool of available organs was extremely small and Sam’s condition was deteriorating. The disease had progressed so far that it destroyed her lungs and in April 2013, she stopped breathing entirely. Her wait for an organ donor had taken too long. When Sam died waiting for new lungs, all her family and friends went into shock.

James W. Newton, close friends of Sam and Luke and a film director, asked himself: why don’t more people donate their organs when they die? The answer, of course, is far from simple but it got him thinking – wouldn’t more people want to be organ donors if they knew that thousands of people, like Sam and Luke, are waiting for a transplant?

To donate or not to donate
More than 10,000 people need an organ transplant in the UK, but 3 of those will die waiting every day.
The UK operates on an opt-in system where you have to declare your wish to be an organ donor and it’s for this reason why raising awareness of the need for donors is so important.

The death of a registered donor could transform the lives of up to nine people and there are many conditions – including CF – where patients are dependent on the generosity of organ donors for successful treatment.

Could Sam and Luke’s tragic story raise awareness of the need for more organ donors or perhaps one day, even initiate a fundamental change to an opt-out system of organ donors?

Through telling Sam and Luke’s story, the director hopes to encourage others to think about donating their organs when they no longer need them. We can all make a difference, even after our death.

This is explained better in this short Kickstarter video.

How you can make this film a reality
‘A Love Worth Giving’ tells the story of Sam and Luke, a young couple torn apart while waiting for a new pair of lungs. It’s a short documentary that highlights the need for organ donors in the UK. But the Director urgently needs help to raise the funds to finish the film and release it to audiences worldwide…
You can check out some of the amazing rewards and make a pledge here:

I’ve pledged my support to this initiative. I encourage you to help as well.

After all, one day it could be my family and friends waiting for that donor call for a new set of lungs for me; and when it doesn’t come, watching me take my last breath…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (CF author)

Find out more via the ‘A love worth giving’ website

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.

My memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early by May 2015!

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , , , , | 2 Comments

Mirror Man

Imagine meeting someone for the first time and you both knew each other inside out? Well, that’s what happened when I recently met a cystic fibrosis (CF)* veteran from America…

I met Jerry Cahill in a London hotel to record a podcast for the global community, on behalf of the Boomer Esiason Foundation, about my experiences of being a dad with CF. Jerry is a late 50’s CF legend from New York State. He has had a successful business career, sporting life in track and field (particularly the pole vault) and a will to live, which was helped by a double lung transplant a few years back which he took amazingly in his stride.

His mantra ‘You Cannot Fail’ has always influenced the way Jerry lives his life and it has become his personal mission to spread that message to as many people as possible. He firmly believes that you should never give up hope and always, always strive to be the hero of your own story.

Due to the risk of cross-infection we were mindful to keep a distance from each other and not shake hands. But even though our personal contact was limited, it was obvious that something interesting was taking place over the 90 minutes we spent together…

Meeting my match
Meeting an older CFer like Jerry was like looking into the mirror but viewing me in a different guise. Although we didn’t look the same and we spoke in different accents, we were clearly cut from the same cloth with our DNA – not just that we had CF and related diabetes – something more holistic and ground-breaking.

Just like me, he believes that everyone should be proud of his/her achievements, big and small, and should find the magic in just being alive for another day.

Just like my family, Jerry’s family took everything day-by-day and never let themselves over-focus on the illness or the possible complications that could arise with CF at any time.

We are both on an even par of positivity, focusing on living, breathing and making a difference to our lives and the lives of others. In a symbiotic way, we intuitively understand that CF is an integral part of us but it does not define us and it does not overly hinder the way we wish to live our lives.

With almost no need to verbally confirm it, there was this immediate bond and kinship. We just got each other; having gone through many of the same daily health battles, popped the same pills, nebulised the same drugs, suffered the IV treatments, injected the same insulin, coughed in harmony thousands of miles apart but equally fought back relentlessly time and again through our medical adherence, sport and unshakeable mental fortitude.
Jerry Cahill

Looking through Jerry’s book of inspirational quotes and his survival insights, I was left in awe by a photo of him running the ‘Run to Breathe’ 10K in New York’s Central Park while on oxygen pre-transplant. If ever there was a photo that encapsulated ‘triumph of the spirit’ and demonstrates what it takes to defy a life-limiting illness like CF, this was it.

If ever you needed inspiration or perspective, I’d like you to remember this image. I’ll never forget meeting my mirror man…
IMG_4914

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.

Tim
Tim Wotton (CF author)

For more information on Jerry Cahill, visit his website.

In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.

My memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early by May 2015!

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , , , , , , , | 3 Comments

Magic Moments

Recently being filmed for a BBC documentary about ‘Bucket Lists’ got me thinking how my life-limiting cystic fibrosis (CF)* motivates me to live every day like it’s my last day on earth…

‘Bucket Lists’ (what some people choose to do if they have a reduced or terminal health prognosis, before they “kick the bucket”) tend to be outlandish and quite expensive ideas, such as holidays of a lifetime, seeing wonders of the world or enjoy life events in exotic locations.

The BBC liked my variation of a Bucket List and wanted to give the programme some balanced opinions. My ‘list’, though never formally written down, is one that anyone can choose to follow, often costs nothing and can be achieved every day.

Man in the moment
As a direct result of having been told I wouldn’t live past 17 because of my chronic CF, now at 43, I feel empowered to live every day like it could be my last.

Every hour of every day is important for me as I never know when I will run out of time. Having CF and type 1 diabetes drives my thirst for life. The way I see it, each day surviving my conditions is physically and mentally debilitating; but at the same time, every day is poignant and needs to feel special to counteract the harshness. Thus it has to be punctuated by magic moments which must be savoured to the maximum. These moments form my unofficial bucket list.

My wife, Katie, and seven-year-old son, Felix, provide the necessary motivation to keep on top of my survival battle and offer me a ready supply of life-affirming memories.

I’m around for them as much as possible, and give Felix quality time, coaching him to play hockey, taking my turn to get up early with him at the weekend, going on family days out and taking Katie out for dinner.

I dress each day like it’s my last day on Earth, and never leave my favourite clothes in the wardrobe waiting for that special moment. I don’t see the need to gripe about the small things I hear around the office, instead I take time each day to appreciate something natural like a sunset or landscape.

I also take full advantage of the windows in each day to fit in socialising, my business consultant job, and not forgetting my vital exercise in the form of hockey on some Saturdays and evening gym sessions.

But it’s more than this. Put yourself in my shoes to really understand my plight.

If tomorrow wasn’t a given, what would you do differently today? What would you spend time thinking about? How would you live and leave your lasting legacy?

Living and leaving my legacy
I passionately feel that it’s crucial to cherish the life you have right now, not the life you hope to have in 10 years-time. Every extra day that I can wrench from my conditions gives me more time to create my lasting memory as well as leave a positive trace with people I know or meet.
magic moments

Think of my scenario as a form of Groundhog Day, where I wake each morning to the wide-range of opportunities and moments available to secure my own legacy. The trick is to have your eyes and mind open and be ready to seize and appreciate them. As a sample, during the course of most days, I do the following:

Wear those meaningful items of clothing
Say something kind to a loved one
Do that thoughtful act for a friend in need
Make a stranger feel happy and special
Message someone I’ve not been in contact with for a while
Smile at someone who never usually smiles
Give my son an extra-long hug
Make my wife laugh
Stop still in awe to witness a beautiful landscape, sunset, cloud formation or the wonders of nature
Close my eyes and feel content about an aspect of my life

… as tomorrow may never come and I would have missed the chance!

As much as I despise my daily health battle (consisting of 2-3 hours of meds), it has given me a perspective on life that many people may never attain or will only encounter later in life. People with a life-threatening condition have a pronounced ability to not only identify, but fully appreciate magic moments, as they contrast so strikingly with the usual daily hardship. As I said, I find it liberating to look at each day as potentially my last day on Earth.

Why don’t you give it a try? Start your unwritten bucket list and see how it makes you feel?

Elton John: “I guess that’s why they call it the blues
Don’t wish it away
Don’t look at it like its forever

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.

Tim
Tim Wotton (CF author)

In other news
My CF memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early in 2015!

My lovely CF friend, Lucy Watson, shares helpful eating tips via her CF and Healthy blog. This post is about the benefits of Turmeric. It’s a must read…

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , | 8 Comments

Breathe with Me

Awareness of my health condition cystic fibrosis (CF)* is improving, but very few people really appreciate how it feels to have chronic lung function. Spare a minute to breathe with me…

The intention of this blog and my published book ‘How have I cheated death?’ was to offer hope and survival lessons to the CF community but also to increase the understanding of the general public about the illness.

I have noticed a familiar trend during my recent media exposure (BBC Blog, BBC Radio 4 interview, Guardian and Express newspaper articles) and especially at corporate speaking events.

During my presentation introduction, I always ask the audience to put their hands up if they’ve heard of CF; whereby almost all respond. (25 years ago, less than half would have raised their hand). I then ask them to keep their hand up if they really understand how serious the condition is or have a personal connection with it. Only 5% keep their hands up…

The non-CF community who have been introduced to my story, whether it be media producers behind my array of publicity or the general public who have read my book already, tend to be flabbergasted by two main facets of the condition:
1. Just how life-threatening it is and that it kills people early
2. How much treatment has to be taken every day to stay alive with no remission period

This is not a surprise to me and is indicative of the awareness versus understanding debacle with this illness.
Obviously it is very difficult to experience the full range of problems encountered by people living with CF, like chronic shortness of breath, constant coughing and debilitating tiredness. Breathing is not actually straightforward for most people with CF as the build-up of mucus in the lungs means that less oxygen is available, which causes problems with breathing normally.

Put yourself in my place
You’ll remember the recent ice-bucket challenge on Facebook that went viral this summer to help people, even for a short while, feel numb with cold to represent how it might feel for someone struck down my ALS (aka Motor Neurone Disease).

The majority of humans take for granted the simple act of drawing a breath, which they manage so successfully and with little or no effort. But for CFers when struck down by lung infection, this can be the ultimate test each day, and one which can inhibit us performing the most simple tasks like walking or going up a flight of stairs.

There’s a way anyone can now feel what it’s like to breathe like a CFer.

By breathing through a narrow straw, you can get some sense of what it feels like with reduced lung function – during intense moments when breathing is a struggle or on the back of a heavy coughing fit.

Try this breathing exercise:
• Take a narrow drinking straw and put it in your mouth (not the wide, flexible kind).
• Seal your lips around it
• Pinch your nose or use a nose clip
• Breathe in and out for 30 – 60 seconds
• Notice how much harder you have to work to draw breath?

Now imagine having to cope with that feeling when you are climbing the stairs, running for a bus or in the case of a child, just trying to keep up with your friends while you play.

To add some musical accompaniment to this breathing exercise, a wonderful song ‘Breathe with Me’ has been written by TWF, featuring the stunning AnnJo (see below), with these poignant lyrics:

Breathe with me
And you will see how hard it is
To live your life
When breathing is as hard as this
Breathe with me
And you will see just what it takes
To do the things
You take for granted everyday

The lyrics of the song along with breathing exercise give people the chance to momentarily feel how restricted our lungs can be and for one minute know the full spectrum of emotion we CFers go through as we fight for our very breath during a coughing fit or when our lungs are struggling.

Join the Strawfie Challenge – By nominating friends/clubs/companies to take part too, you will help to spread understanding about CF. You can donate as little as £1.00 per strawfie (picture of you doing the breathing exercise) by texting BWCF64 £(amount) to 70070.

So, tell a friend or friends about this blog post, share the ‘Breathe with Me’ song and the breathing exercise. Add this exercise into your CF fundraising events.

Use your healthy breath to breathe life into the lungs of CFers around the world. Your one minute versus my 43 year lifetime sentence. I would take the former option in a heartbeat. In this season of goodwill to others, please take some time to breathe with and like me.

Thanks and festive wishes.

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.

Tim
Tim Wotton (CF author)

View more information at the Breathe with Me website http://www.breathewithme.info/index.htm
TWF featuring annaJo – ‘Breathe with me’

Other news
The UK CF Trust has just released this thought-provoking film about the importance of breathing to CFers… ‘The Breathe Before’

My CF memoir is a finalist for the UK People’s Book Prize! Please help me to win by adding a comment via this link. I find out if I’m the eventual winner early in 2015!
http://www.peoplesbookprize.com/winners2014.htm
My BBC Blog Carpe Diem
http://www.bbc.co.uk/news/blogs-ouch-30129362
My appearance on BBC Radio 4 Saturday Live show (main interview at the 1 hour 10 min mark)
http://www.bbc.co.uk/programmes/b04t9j63

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , , , , , | 2 Comments

Great Strides

Guts and determination aren’t only needed by those battling the chronic illness cystic fibrosis (CF)*, they’re also required by our incredible fund raisers. My wife is one of them…

Last Sunday, my wife Katie took part in the London Parks Half Marathon as part of over 40 runners raising money for CF, which included three CFers. Unfortunately, she had injured her knee back in July and more recently badly damaged her groin during a 10 mile run in Southend-on-Sea. Much to her annoyance, Katie could hardly lift her leg let alone jog. Would she have to pull out? Could she bear running with such considerable pain?

Katie has a strong running style, especially when compared to me. If we were cars, she would be a Ferrari California and I would be the Alfa Romeo 1900 rust bucket that was recently discovered in a Boston garage in a state of disrepair. That Alfa, like me and my lungs, with a wash can look regal on the outside but is a mess under the bonnet!

When Katie is in full flow she is almost effortless – like a gazelle – and not really out of puff whereas any exercise I undertake these days with my 43 year old CF lungs is akin to flogging a dead horse.

In the end, Katie decided to go for it.

My seven year-old son Felix and I, decked out in CF t-shirts and holding balloons and the banner ‘CF: A fight we must win‘, were there to support Katie for as long as she could run. We reckoned that the section of the race on Westminster Bridge would be a good vantage point to congratulate her on her brave endeavors.

Using an app on my phone we could track her progress and judge where she was on the route and when she would appear at Westminster Bridge. Suddenly we could see her and she was looking out for us. I could spot the good luck card that Felix and I wrote for her which was securely placed in her running shorts. It was an emotional moment and after a long tearful hug between Katie and Felix we all huddled together as the racing throng passed by us.

Team Wotton taking on CF

Team Wotton taking on CF

I am deeply proud of Katie’s achievement. She knew that her groin injury would severely hamper her ability to run and yet she defied the pain to take part, not backing down from the challenge she had set herself. The deeply frustrating aspect is that she had built up good fitness prior to the injury so she knew that she could have run the required 13 miles in a competitive time.

As I’ve stated before in this blog and in my book ‘How have I cheated death?’, I’m thoroughly in awe of anyone undertaking fundraising activities. This is magnified when it will help my illness; raising much-needed money to make a tangible difference to future treatments, care and a hopeful cure. All my family and a lot of our friends have played their part over the years in this pursuit which creates a tight bond. As someone who’s never had one day of ‘normal health’, it’s wonderful for me to witness relatively healthy bodies being put to such good use.

However, I do admire and envy the marathon runners in equal measure. It’s galling to watch people seamlessly run such distances, some I suspect with little preparation; when on some days, getting up a flight of stairs can seem formidable for me and others like me.

Standing on that bridge was a seminal moment – a family of three coming together to defy CF. Katie through her running to raise money for valuable cure-bringing funds, me with my daily medical diligence and sharing my survival story and Felix helping to de-mystify the condition for all of us with his sunny disposition and contagious happiness.

In a supposedly ‘fun’ race where there are no real winners and losers, it’s the taking part that counts. Katie took part and her brave efforts and associated money raised most definitely counted. Although every step last Sunday was painful, she made great strides for CF.

In other news: I want to congratulate my wonderful twin brother Jez on his recent marriage to the lovely Julie – I wish you all the health and happiness in the world!

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (CF author)

Your help please:

You can still donate for Katie here.

Please watch and share my book ‘How have I cheated death?’ promotional You Tube video.

My CF memoir has been nominated for the UK People’s Book Prize! Please help me to win by voting for me via this link.

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , , , | 12 Comments

Lessons learned

Something very important happened 25 years ago this week which taught me some critical lessons in life and in particular coping with my chronic illness cystic fibrosis (CF)*…

On 24 September 1989 (a Sunday), I started three years at university – Roehampton College in South West London.

On that very day all those years ago as my dear parents delivered an apprehensive (but strikingly handsome) youth to his new life, the 28th Ryder Cup played out to a draw at the Belfry in Warwickshire, England which allowed the European team to retain the most famous golf competition since they had won it outright two years before.

At that time 25 years ago, ‘Ride on Time’ by Black Box was number one in the UK music charts and ‘Girl I’m gonna miss you’ by Milli Vanilli topped the US chart. Indeed, it was the year Keisza, the popular Canadian music star, with the current dance hit ‘Hideaway’ was born!

The first Michael Keaton ‘Batman’ film (with the Prince soundtrack) and ‘Bill & Ted’s Excellent Adventure’ were popular in cinemas. George H. W. Bush and Margaret Thatcher were the respective US and UK leaders. 1989 was the year that the World Wide Web was first conceived of in Switzerland by Tim Berners-Lee.

I began this new stage of my life on the back of the August 1989 triumphant announcement by scientists from the US and Canada that they had discovered the gene associated with CF. They predicted that a drug to treat the disease was in reach. Sadly, I am still waiting on that one.

If I could speak to that callow 18 year old back in September 1989, standing bewildered with a heightened sense of trepidation in his college room, what would I tell him?

Experience is everything
As well as the knowledge acquired attending actual lectures (none of which really helped my future career as a communications specialist); I learnt the most about managing my health through experience during this time.

Further education – the need to enhance my education didn’t just apply to stepping up to university from school, getting to better know (but never fully understand) the fairer sex (lessons in love you might say); it also related to the need to educate and coach the people I met there about my condition as it was little heard of and understood back then. In my day (I’m now officially old enough to use this expression), I recall that there was a rumour doing the rounds at college that I had MS rather than CF.
There’s a big difference now relating to the general awareness of CF compared to 25 years ago but it still has a long way to go.

Ingenuity – I discovered the flexibility required to cope with changes of plan and out-of-the-blue challenges. In my Halls of Residence, the room didn’t have the right plug fittings so I needed a long extension lead which went out of the room and down the corridor to use my crucial nebulizer. Back in those days, it was a big and noisy compressor that wouldn’t have looked out of place in the engine room of the Titanic and it involved the most unsubtle tubing out of the window. With the extension cable out of the door, the industrial noise of the compressor and the tubing out of the window, there was no hope of making my treatment secretive!
After a week, I was able to move to a room (Roberts House 116) further down the corridor which had the correct plug fitting which meant I only had to contend with the drill hammer noise of the nebuliser and the tubing out of the window.

I had to utilise wooden blocks on the legs of the bed to elevate it for my physiotherapy sessions to achieve the appropriate postural drainage position. They were prone to slipping mid-treatment which was a scary proposition for all concerned!

I had to be astute with public transport to take me to GP appointments, physiotherapy sessions at Queen Mary’s hospital in Roehampton and travel to both Royal Brompton and Frimley Park hospitals.

I also had to take a deep breath (easier said than done with CF!) when the on-site campus doctor kept referring to my illness as ‘mucoviscidosis’ rather than cystic fibrosis. His terminology, much like his medical ability, had long since passed!

Unexpectedness – I discovered that the milk of human kindness can be found in some unusual places – some of the lads (and on-going best friends) I met at university helped me with my physiotherapy most evenings while watching Neighbours on my tiny red TV! The power of friendship leaves me speechless.

Unhappy Eater (AKA Let them eat cake) – It was vitally important to eat as much as possible to keep my weight up to stave off lung infection. Unfortunately, the food in Halls was most unappetising. I supplemented this with takeaways of pizza and Chinese takeaways and cycle rides on Tuesday mornings (no lectures) to the local shops in Southfields to buy cake and other goodies. It wasn’t a surprise that I had more volunteers to help with my physiotherapy on Tuesdays so they could raid my stash of sweets!

Stay the course – to maintain my health in order to allow me do my studies and have fun, I couldn’t afford to cut any corners with my medical care. It was at college that I really understood the importance of my now embedded mantra ‘I’m only as healthy as my last treatment’.

Life’s for living – university life was a never-ending social carnival – I chose not to hold back as those who witnessed me in action (and often lost in action) will testify.

Regress to progress – I suffered many health setbacks. Taking responsibility for my healthcare was often a case of one step forward and three back. But I learnt what worked for me (as everyone copes differently), what treatments never to miss, how poor health made me feel and that the ability to keep defying CF is addictive.

Owning my health – my time at college was the first crucial step to being accountable for the ownership of my illness and not relying so heavily on my parents for guidance and treatment reminders. I learnt more in those three years at university, and especially fending for myself in that first term, than I did in the previous 18 years at home cossetted in the warmth of family care by my beloved parents and brothers.

Along the way, this period contained many health pit-falls, heartache for my parents (seeing me struggle) and lessons learned a-plenty that would serve me well in the long-term as I forged a career, played sport, got married and became a dad. It was the end of the beginning…

I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim

Tim Wotton (CF author)

Your help please:
My CF memoir ‘How have I cheated death?’ has been nominated for the UK People’s Book Prize! Please help me to win by voting for me via this link.

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

Posted in Postcards from Earth | Tagged , , , , , , , , , , , , , , , | 7 Comments