Days like this

Knowing when you feel content is a tough trick in life. Is this harder or easier for someone, like me, battling with a long-term illness like cystic fibrosis (CF)*?

Being ‘in the moment’ (as is the modern parlance) and realising when life feels right or even perfect is a wonderful sensation for any of us. When it happens to me I have a sense of tranquillity; where I feel balanced and almost invincible. Simply put, I just feel utterly happy to be alive and grateful for all my blessings. I’m delighted ‘as is’ instead of wanting ‘to be’.
Recently I had the fortune to enjoy a whole day of such joy…

7:00AM It all started on a Saturday morning. I had got up early with Felix. As he’d done so well at school I had bought him a new Tintin book (In America) which he’d been wanting for a while. I left it downstairs for him to find as a surprise. On seeing it on the lounge table, he did a double-take and with unbridled joy performed his ‘happy dance’!

8:00AM We both enjoyed that Saturday morning luxury of not having to rush about as we would normally do on a work day/school run. While eating porridge we watched the ‘Despicable Me 2’ film which always makes us guffaw and features our favourite song ‘Happy’ by Pharrell Williams. Katie joined us for breakfast before driving off to near-by Kingston to go shopping.

9:30AM While Felix was getting changed, I took the chance to quickly view my emails and read a note from my recent CF acquaintance, Lucy Watson, who lives in Australia but originally comes from England – not only have we been mentoring each other on CF survival tips and health supplements but it turns out that both our mums knew each other from CF fundraising decades ago. Proof if ever needed that this is a small world.

10:30AM We met up with my twin brother Jez and his partner Julie and in the lush Spring weather we first visited the lovely grounds of a Buddhist Temple in Wimbledon before spending the rest of the morning and lunch in Wimbledon Park; a stone’s throw from the Wimbledon Tennis Championship courts.
It was the beginning of a glorious day with blue skies, bright sunshine, daffodils blossoming – a welcome break from the months of heavy rain that England has endured. It quite literally put a spring in our step as we trekked around this beautiful park.

12:15PM Before lunch Felix was feeling peckish so Jez offered him a tube of refresher sweets. Turns out that Jez carries sweets on his person whenever he meets me to mitigate against any diabetic hypo I might suffer – such a caring and thoughtful gesture and typical of him. Felix appreciated the gift as well!
This was followed by a game of crazy golf with Felix – I was delighted that he’d improved his technique and was now prepared to wait for me to finish putting on each hole before speeding off to the next tee.

13:30PM After dropping Jez and Julie at the top of Wimbledon Hill, we had a brief rendezvous back at home with Katie before I got changed into my field hockey kit and drove to the Bank of England sports ground in Roehampton for my London Edwardians league game against a strong Kenley team.

14:30PM I was asked to start the match. During the warm up, I reflected on the recent tough IV treatment I’d endured where I’d undergone grave doubts whether I’d be fit enough to play hockey again, let alone actually start a game. When in the midst of a depressing IV session, which can drag me down like quick sand, there are absolutely no guarantees of playing sport again or being properly active. When walking up a flight of stairs can cause me untold breathlessness, the thought of playing competitive sport is furthest from my mind.

Whenever I play hockey these days, just being on the astroturf pitch brings back salient memories of my dad, rest his soul. I always look to the sky as I start every game and have a quiet chat with him, which helps me to feel his presence once again. He hardly missed any of my games when he was alive and it invigorates me to think he catches every game from the lofty heights above.

16:30PM We had a hard-fought and much deserved 3-1 win over Kenley which at times tested my fitness and lung capacity to the extreme. This was followed by the usual post-game team refreshments in the bar along with all the sporting rituals of naming ‘man of the match’ and ‘idiot of the day’. (I was not named for the latter award in case you were wondering). It was in the bar that I began to feel that happy glow of post-exertion tiredness that envelopes me like a snug duvet and emphasises exactly what I’ve physically put myself through.

18:00PM Back home for family time, Felix bath and his bed time reading of the new Tintin book. It brought back sweet memories when I was a child as I used to enjoy reading and being read these books by my parents.

19:00PM Once my boy is asleep, I’ve got a short window to sit at my laptop and edit another chapter of my forthcoming CF-related book which is due for publication in early May. I recently discovered through email correspondence that the publisher’s proofer of my book has a young brother with CF and she was shocked and pleasantly surprised to review a book about the illness – another small world moment!

20:00PM I had some light dinner with Katie before popping out to Balham in London for my hockey friend Tina’s birthday drinks; which allowed me to catch up with some friends I hadn’t seen for a while and to celebrate the earlier hockey win. Beer always tastes better after a sporting win…

23:45PM Back home on the tube before midnight for a well-earned sleep. Lying in bed, Katie stirred which allowed me to hold her hand briefly without waking her up. As I drifted off to sleep, I reflected back on the day that had just occurred. It was an extraordinarily busy but wonderful day. It was a special day, despite the fact that I still fitted in all my CF and diabetes medication. (I purposely decided not to highlight the actual array of treatments during this day, but rather focus on the good moments).

A constant stream of love, joy and happiness pervaded through the whole day. Although it didn’t merit performing my own version of Felix’s happy dance, I was positively buzzing inside. I felt pure gratitude. Today was a memento for me to treasure always.

It served as a timely reminder that happy days can often be just around the corner which is particularly uplifting following some dispiriting times, like my recent IV treatment. It provided another deposit in the ‘Tim Wotton Bank of Hope & Well-being’ that gets severely pilfered during the rough times when my health crashes.

From my own experience and that of others I know, people with a life-threatening condition have a pronounced ability to not only identify but to fully appreciate magic moments and days as they contrast so strikingly with the usual daily hardship.

Indeed, I strive to defy the ravages of CF in order to keep as well as possible to be ready for and enjoy days like this.

‘Oh, such a perfect day
… just keep me hanging on’

Lou Reed – Perfect Day

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

* 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.

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Time Out

‘There’s always someone worse off than you.’ Taking time out to manage my debilitating illness cystic fibrosis (CF)* has allowed me to evaluate this saying…

Just like a greyhound chasing and finally catching the rabbit, my CF has caught up with me again. My lungs have deteriorated enough that I required some intravenous (IV) antibiotics. Though only a moral victory, this is the first time I’ve had to endure an IV for 16 months, which is the longest period I’ve gone without such an intensive treatment since my teens.

However, it means taking time out from the real world and my busy life in London as a business consultant, husband and father for a spell of recuperation time with my mum in Southampton. It’s proved to be a real shock to the system. Being away gets harder with every year that passes. This was reinforced by Katie relaying to me that Felix had recently said “I want daddy!”

It serves as a harsh reminder for this 42 year old that I can run but cannot hide from my unforgiving illness. One always feels hunted down by this condition.

In the last two weeks I’ve been through the mill. As well as feeling very washed out, the IV drugs have given me a few nights of delirium; one in particular was so fierce that it gave a new meaning to ‘Saturday Night Fever’.

As these IV treatments can take up to two hours three times a day and I’m still maintaining my usual CF and diabetes medications, a significant chunk of each day is medical related. It feels at times like a tag team event between each different drug.

I’ve also had to put up with a persistent pain and discomfort where the PICC IV line goes into my arm which recently had to be re-dressed at the local Southampton General Hospital.

Yes, it’s been rather a torrid time to be honest and it’s initiated in me the first really depressive thoughts for quite some time. At such times there is a natural tendency to really cover oneself in the bubble wrap of despair.

I have been able to utilise the little downtime to spend quality time with mum, see my brothers, my elder brother’s family, local friends and I did have a form of day-release to meet with Katie and Felix half way between Southampton and London. I’ve also been able to visit the rest home of Betty Lacey, the wife of Ken whom I featured in my last post ‘Always there’.

In this departure from reality I’ve had more time to view the outside word from within. See below a snapshot of CF news I’ve heard from local friends in Southampton or seen on social media, TV and in the press:

- A mystery CF diagnosis of an infant storyline on the UK TV programme ‘Call the Midwife’.
- A local Hampshire girl, Sarah, is responding well to the new lungs following her much needed transplant last November.
- A 31 year old mum in Ireland is belatedly diagnosed with CF following the diagnosis of her own child. She had been treated for chronic asthma all her life and CF had been missed.
- The UK CF Trust have kick-started their 50 year anniversary activities with CEO, Ed Owen, on BBC Radio 2 talking about lung transplants but also launching their ‘No Party’ theme – highlighting that CF is no party as well as mandating that they won’t party until all CFers make it to at least 50!
- A 38 year old CF adult from London, Nick Talbot, is hoping to climb Mount Everest in June. Nick is an experienced mountaineer and is boosted by the wonder CF drug Kalydeco.
- A worried dad in Australia asking for help and advice for his recently diagnosed two month old daughter.
- A girl, claiming she was not a CF sufferer, on an online CF forum berating all CFers for making light of their illness with their ‘gallows-style’ humour.
- CF adult advisor for Scotland, Yvonne Hughes, taking part in a trial to see if singing can help lung function for CFers and separately signing up for the Great Scottish swim later this year.
- Danish scientists have discovered a natural garlic compound, ajoene, which could help fight CF infection. Tests are being carried out on rats. (Apparently, the male rats claim their lungs have never felt healthier but the females have stopped kissing them!)
- The British actress Jenny Agutter featured in a Daily Mail article that focused on her niece who has CF and the possibility that two of her siblings could have succumbed to the illness.
- My cousin from Oxford, Sarah McNaught, has sent out a donation website ahead of her wonderful commitment to run the London marathon in aid of CF.
- A wife asked for prayers as her husband was rushed to hospital in America to receive his donated lungs.
- A much loved 15 year old boy in America and a beautiful 23 year old girl from the Faroe Islands sadly passed away due to CF.

This full spectrum of news demonstrates that CF is a global condition and engulfs many people – from the sufferer, to their immediate family and associated friends. The last two sad stories are pretty commonplace on the web and provide the quickest antidote to any self-pity I might ever feel.

The news highlighted that there are very few winners with CF and helped me to re-set my mind set to the truth that even though I may be having a tough time in my microcosm of IV frustration, that there is always someone worse off than me. I can never be grateful for my suffering but I am deeply appreciative of every breath I take and any extra time I have in this world.

Taking time out is never going to be easy but it is vital to help galvanise my health so that I can return to my fulfilling life in London. However difficult it is to achieve, perhaps we can all benefit from occasionally taking time out to see the bigger picture around us?

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

* 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.

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Always there

It’s not just close family and friends that help people with chronic illnesses like cystic fibrosis (CF)*. The recent death of one of my unsung heroes reinforced this…

I received a text from my mum a few weeks ago breaking the sad news that Ken Lacey had died aged 92. Ken and his wife Betty, who survives him, were like pseudo grandparents to me.

We’ve known Ken and Betty Lacey all our lives and there’s a good reason for that. They tragically lost their CF son – their only child – Peter in 1974, aged only 24. Back then this was an unexpected age to reach considering the life expectancy of CF sufferers. As context, when I was born in 1971, I wasn’t expected to live much beyond 17…

Ken and Betty were realistic about Peter’s chances but realised that he shouldn’t be wrapped up in cotton wool. Instead he was encouraged to make the most of what life he was likely to have. When he was in his early twenties he bought a hearse car along with some college friends and they drove it on the Continent and had a wonderful time. The irony of driving around in a funeral car is certainly not lost on me.

Peter was very artistic and attended Art College and his paintings were shrined on the walls and cabinets of Betty and Ken’s homes. Those paintings were always there to remind them.

Peter was treated at Great Ormond Street Hospital (GOSH) in London, curiously at the same time that my mum was being trained there as a nurse, though we don’t think their paths crossed. He also was an inpatient at Tadworth Court, the country branch of GOSH. My mum trained there as well.

My parents met Ken and Betty at a local Hampshire CF meeting in May 1972 when Betty was the Secretary and Ken the Treasurer, positions they held for a while before my mum took up the post of Honorary Secretary in 1975.
In 1982 Ken and mum even went to Claridges, London, to meet HRH Princess Alexandra who was and still is, the CF Trust Patron.

They were a key part of the Hampshire CF fundraising committee and attendees at a plethora of events, often organised by my parents. From CF stalls at the Southampton Show, the balloon festival, tennis clubhouses, people’s homes and gardens, Ken and Betty were omnipresent. Ken took people’s entrance money at many of these events; a mantle that was passed to my dad overtime before his heart breaking demise due to Motor Neurone Disease just over a year ago. Betty would help out with the ‘bring and buy’ stall or serve refreshments.

In fact for over 30 years they were for many people synonymous with CF fundraising in Hampshire. They could have dipped out following the death of their son but they stayed loyal and dependable. I was always there and so were they.
So when that text came through and I read that one of my biggest supporters had perished, I did feel terribly upset, even though his failing health meant I hadn’t seen him in a few years. As a father myself I pondered on how rough it would have been for them to lose their one and only child at such an early age and that being that.

I believe that they viewed me as a pseudo grandson, making frequent visits to our house and always remembering my birthdays. They were extremely thrilled when I married Katie and when we had our son Felix. They must have felt pride and joy in all my life achievements and milestones. But that must have been twinned with gut-wrenching pangs of grief for their own boy who didn’t live nearly long enough to work full time, buy a house, marry or have children.

At 24 I was not long out of University, getting into work, playing my hockey and having more fun than is reasonably possible. I cannot conceive how awful it would have been for them to lose Peter at such a fledgling age.

Peter, who I never formally knew, is one of many sadly deceased CF sufferers who are hard-wired into my conscience, binding my soul with the fortitude and hope to carry on with my relentless fight for survival.

They lost their boy but found another one to make a difference for. I was always there to remind Ken and Betty of the cherished son they had and they were always there as extra grandparents for me and as willing helpers to raise money to treat my illness. I will always be grateful for their care and devotion. Love always…

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

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 9,000 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.

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Staying the course

Featuring in a recent TV programme on the ticking time-bomb of antibiotic resistance highlighted my own plight with the chronic illness cystic fibrosis (CF)*…

Let’s start with the basics… an antibiotic is a term for a drug or other substance used to kill or slow the growth of bacteria. Antibiotics are the bedrock of modern medicine. For 70 years they’ve been at the forefront of our fight against infection.

Since the manufacture of penicillin in 1943, antibiotics have saved millions of lives by combating infections. But there has been no new class of antibiotic developed for more than a quarter of a century. And bugs are battling back.
Through overuse antibiotics are losing their effectiveness. This is becoming a serious and growing phenomenon in contemporary medicine and has emerged as one of the pre-eminent public health concerns of the 21st century.
Resistance is a common yet problematic issue in treating pulmonary exacerbations or infections in people, like me, with CF.

However, despite a push for new antibiotic therapies there has been a continued decline in the number of newly approved drugs.

How does resistance develop?
Antibiotic or drug resistance results from bacteria changing in ways that reduce or eliminate the effectiveness of drugs or other agents used to treat infections. Not all bacteria are bad. However, there are some that can cause infections. As bacteria are exposed to antibiotics over time, resistance may develop, and the number of antibiotics we have to kill the bacteria decreases as well.

With antibiotic resistance, bacteria are now able to survive the use of these drugs meant to kill or weaken them. In effect, each time bacteria are “exposed” to antibiotics, they can change in a way that the antibiotics are no longer effective. So, the most common way resistance is acquired is by exposure to antibiotics. With antibiotic exposure, resistance generally develops overtime. The length of time depends on the bacteria and the antibiotic, which can range from one treatment course to several hundred.

Another way of acquiring resistant bacteria is through contact with other people or equipment when not using appropriate standard and contact precautions. Hand washing, hygiene, and washing of respiratory equipment are vital. The dynamic of cross infection among CF sufferers, getting too close to each other, is such a damaging one.
As well as feeling first-hand the diminishing effect over time of the drugs on my lungs; my doctors would analyse my sputum samples taken during hospital visits to determine the state of my bacteria. In simple terms, if my bacteria are ‘sensitive’ to certain antibiotics then I will be prescribed them and if I am resistant than I won’t.

Catch-22
On a daily basis, I take two different types of oral, two inhaled and one nebulised antibiotic. My CF catch-22 is that I need to be on a substantial amount of antibiotics permanently but this in turn reduces their every-day effectiveness and eventually builds up my resilience to them.

It’s different for CFers as we don’t tend to have a short burst or a week-long course of antibiotics. We tend to stay on certain tablets, inhalers and nebulised antibiotics continuously; sometimes alternating month on, month off with certain medication.

But as portrayed in the TV documentary which shows me with my family and out on a field hockey pitch, these antibiotics are life-savers. In my case, they act as enablers for me to work, play sport, be a husband and father. They are the breath of life for someone with CF.

One dilemma I faced ahead of the filming of my league hockey game was not how telegenic I was, but the fact that the rain clouds were looming and rain and my lungs are not a good match. Just my luck – I’m about to be filmed for a lot of people to view and I’d be wheezing all over the place! After much deliberation, I chose to play despite the rain and hope the cameraman would edit out the inglorious parts.

Holding my nerve
In the simplest cases, drug-resistant organisms may have acquired resistance to first-line antibiotics, thereby necessitating the use of second-line agents. And so it’s proved with me…

There’s a whole raft of ground-breaking antibiotics (oral and IV) that I was prescribed in the 1980’s that are now no longer part of my medical regime. They shone brightly, boosting my lung capacity, then after a while their effect petered out and I had to wait for the next mini-miracle drug to arrive.

I’ve become completely resistant to some drugs and the effect of other medication has reduced over the years as my body has been over-exposed to them.

Am I panicking about this potential antibiotic Armageddon? The answer to that is yes and no! If I dwelled on the likelihood of no more pipeline of medication I would get pretty depressed. But I tend to exist in the ‘here and now’ world where there are still drugs that I’m sensitive to which help me to fight CF.
To use the Forrest Gump vernacular, antibiotics are like a box of chocolates, you never know what you are going to get next!

For now, I’ll stay the course, hoping that my drugs keep knocking hell out of the bacteria, while I wait for the next miracle to come my way…

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

ITV Tonight 24 October: ‘When the drugs don’t work’ documentary (for those in the UK) – See me at 5:10 and at the end

http://www.itv.com/news/2013-10-24/tonight-when-the-drugs-dont-work/

http://stuartharley.com/tim.zip (just my section of the programme for those outside of the UK)

I read that Sir John Batten, UK specialist in chest diseases, has recently passed away. This man started the first clinic at the Brompton Hospital for adults with CF. He also trained my previous Doctor Ron Knight. I owe him a huge debt.

Good News - I have found a publisher for my CF-related book and I hope to launch it during Spring 2014… I’ll keep you posted!

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 9,000 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.

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Great Expectations

DrugComplianceImgIt’s staggering to learn that only half of people with a chronic illness are compliant with their medication. Even after 42 years of handling cystic fibrosis (CF)*, it’s hard to always get it right…

Wiki defines medical compliance (also adherence or capacitance) as the degree to which a patient correctly follows medical advice. Most commonly, it refers to medication or drug compliance, but it can also apply to other situations such as medical device use, self care, self-directed exercises, or therapy sessions. Compliance is commonly confused with concordance. Concordance is the process by which a patient and clinician make decisions together about treatment.
Worldwide, non-compliance is a major obstacle to the effective delivery of health care. In 2003 estimates from the World Health Organization indicated the startling fact that only about 50% of patients with chronic diseases living in developed countries follow treatment recommendations. Ten years on, a US Fox Business study highlighted that nothing had changed. Patients improperly taking their medication not only results in longer cure times, repeat doctor visits and more illnesses being spread, it’s also causing the US health-care system to hemorrhage money. According to The National Consumers League non-adherence costs the country more than $290 billion a year.

This lack of compliance is a global health problem that is of major relevance to the UK National Health Service (NHS). Non-compliance prevents patients from gaining access to the best treatment. This may be particularly problematic in chronic medical conditions, including current NHS priorities such as mental health, cancer, diabetes and respiratory illness.
It’s a huge predicament and there’s not one single good reason why people don’t take their medication. The Fox Business report stated that patients stray from their treatment regimes for a variety of reasons, with forgetfulness being the top reason – especially among patients taking multiple pills a day. The cost (in countries with no formal health service) and lack of education are also reasons people choose to be non-acquiescent. According to medical experts, if people don’t understand why they are taking the medication or can’t gauge the benefits, they are more apt to stop taking it, figuring they don’t need it or it’s not effective.

How do I compare?
I’m no paragon of virtue when it comes to meticulously taking every one of my prescribed meds. I would count myself as being 98 per cent compliant with my huge assortment of treatments for CF and diabetes.

Over the course of this recent English summer (we actually got one this year!) I have had a number of occasions when my normal water-tight medical regime was breached. Top of the list were two beach trips during one week in July when I forgot to transfer my enzyme tablets (essential for me to digest my food) to my beach bag. The first time in Hampshire I decided to eat hardly any lunch to reduce the likely stomach ache; and five days later in Brighton with Katie on our tenth wedding anniversary. This time, on realising my mistake, I decided to get a taxi from the seafront back to the Park n’ Ride in order to raid my stash of enzymes in the car. That cab fare cost me £20 – a costly error!
Outside of these beach aberrations I have missed the odd nebuliser session through the busyness of life causing me to forget; while in a hurry to get out of the door I have been prone to only taking two of the four antibiotic inhaler blisters.

Sometimes I just can’t physically do my treatments due to life and work circumstances; like doing my physiotherapy when at an all-day work conference or when attending an after work social function. At work when in back to back meetings, fitting in the check of my blood sugar levels before lunch occasionally goes missing in action. A weekend event such as a wedding can also limit getting ‘everything done’.

I do try mitigating against any treatments I am likely to miss later in the day by doing my essential medication such as my nebuliser in the morning. At certain times, needs must. In the 1990’s, I did once conduct my heavy-duty intravenous treatment in the back room at a cousin’s wedding, ably supported by my mum.

Taking my own medicine
By way of contrast I made a rough calculation of a year’s worth of medicine intake versus what I actually missed. Annually I would be expected (prescribed) to take 15000 tablets, nebulise 364 times, undergo 750 physiotherapy sessions, inject diabetic insulin into myself over 1500 instances and prick my fingers on 1000 occasions to test my blood sugar levels.
In that same year, I reckon on average I would miss 40 tablets, 3 nebulisers, 15 physiotherapies, hardly any injections and the odd blood sugar test. So it’s not full compliance but close enough considering I have to fit all that in alongside a busy life working full-time as well as being a dad to Felix and husband to Katie.

Setting my own expectations
Through my lens, there’s a huge disparity between drug adherence if one has had a chronic health condition from an early age compared to developing an illness later in life, usually after a period of reasonably ‘normal’ health. I have had a life time to hone this utter devotion to medical duty. What is 40 tablets missed a year for me might be five pills for someone who is new to it all with a smaller drugs regime.

In order to make the treatments a way of life for me, I had to take personal responsibility for myself and I needed to own my care. After all these years, it been rather embedded into my sub-conscience. It’s like I have a radio voice, ‘Tim Wotton FM’, in my mind, constantly reminding me when the next medication is needed. “I’m about to do this, therefore I need to do that before, during and after.” “You’ve just done this, now you need to do this.” Sometimes if feels like I’ve got the computer HAL from the film ‘2001: A Space Odyssey’ in my head. “I wouldn’t forget that tablet if I were you Tim!”

Early on with a new drug I look to catch myself doing the right thing; taking it even when no one was watching or by my side. One has to find a way to remind themselves – post-it notes around the house if nothing else works – until it becomes second nature and as routine as brushing one’s teeth. If I’m not entirely sure why I’ve been prescribed a particular medication, I feel empowered to ask my doctor a few pertinent questions to sanitize whether it’s the right one for me.

I like to bring some competition into it – mentally ticking myself off when I miss or forget part of my regime. Physically I will suffer as any missed treatment will cause a detrimental effect to my health. I know that I can’t teach CF and diabetes a lesson by not complying. However, it will surely teach me a harsh lesson if I don’t knuckle down.
Even when I do everything 100 per cent right I’m not content with the state of my health, so why would I want to jeopardise the health I could have? My mantra is that I’m only as healthy as my last treatment.

I try to be understated about my meds – showing the illness the right amount of respect and care without making the minutiae of it all-encompassing and overly obvious for those around me.

No one else can take those meds for me. The buck stops here. I try to make the illness live with me rather than me living with it. From bitter experience I don’t defy the medicine. Instead I look to defy the illness itself by adhering to the medical regime. A tricky balance can be found between doing your medicine and having a life – I certainly don’t forgo one to have the other.

The deepest motivation I have to not miss a trick is one based on the CF version of the film ‘Two Weeks Notice’ – what would happen to me if I stopped my treatments for just two weeks? How ill would I become? Even when I miss the odd treatment the effect on my health is pretty noticeable. I’m pretty sure that after two weeks of living without due diligence, I’d be in hospital and really struggling.

This awful thought provides me with enough commitment to be as close to 100 per cent medically compliant as is humanely possible. After all, no human is perfect.

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

* 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.

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Right beside me…

A recent anniversary caused me to reflect how important being in a relationship has been in sharing the mighty burden of my chronic illness cystic fibrosis (CF).*

Last Friday my wife Katie and I celebrated our 10th year wedding anniversary with a trip to Brighton, East Sussex, for some sea air and fun on a sweltering hot day. During the anniversary, as is the norm on such days, we discussed our memories of our wedding on a similarly scorching day. We also raised our champagne glasses and toasted this significant milestone.

For most of my life, such an event had been unthinkable. Growing up, with the worry of a life-threatening condition, I never thought I’d live long enough to ever be married, let alone to be actually toasting anniversaries.

For most of my teens and twenties, the cosy image imagined by many of marriage, two kids, lovely house with a picket fence was one that I never envisaged. Outside of a few close relationships, I chose not to look too far into the future and mainly adopted a similar approach to marriage.

In December 2000 things changed dramatically when I began dating Katie, who I already knew for over six years from the South London hockey scene.

In March 2001, Katie helped me to celebrate my thirtieth birthday. This was a major tipping point as I had made it to the average life expectancy (as it was then) and the noose around my neck suddenly didn’t seem so tight. Life suddenly felt different and I had an eye on a renewed future with someone special to live it with.

We got engaged in late 2002, joking that our wedding vows should be changed from ‘in sickness and in health’ to ‘in sickness and in sickness’. Marrying someone when you know that their life could well be cut short does feel extremely daunting. It’s the true test of our love to have my longevity permanently hanging over us.

On 19 July 2003 we married on what was a truly remarkable day. Benjamin Franklin, one of the Founding Fathers of the United States of America, once said of marriage: “Keep your eyes wide open beforehand, and half shut afterwards.” Well on that day my eyes were most definitely open and I felt blessed to marry Katie with all our close family and friends at our side. For me, it was another defining moment in my life where CF was not the focus.

As the life expectancy of CFers increases year-on-year, more and more ‘normal’ life activities are possible and this includes relationships and marriages being considered routine and natural. However, relationships involving a CF sufferer (and in some cases between two sufferers) can be more of a challenge at times and not for the faint-hearted…

There are a lot of functional activities that come with living with someone with any long-term health condition. At the basic level with CF this includes being close to physiotherapy, constant coughing, nebuliser sessions and debilitating intravenous (IV) treatments. These are not fun, sexy or interesting times – it takes a special type of person to be around these daily treatments and keep seeing the person ‘behind’ the illness and not get too sad, disheartened or bored.

Outside of the usual spats that accompany marriage, there’s a whole other layer of activity that can put pressure on a couple where CF is part of the dynamic.CF care is not like being around a partner as they quickly get over a case of the flu. Ours lasts forever, takes no day off and is utterly relentless.

Of course this is not for everyone. People often say when they’ve found the right one and they ‘just knew’ that they were with the right person. Well with CF I’d add another ingredient – I ‘just knew’ I’d met someone who could cope with my condition without making me feel like a permanent patient.

In my case, Katie, a senior urology nurse, understood my condition and has always taken the harsh sights and sounds of CF in her stride, never making me feel overly conscious or affected. She understood the bigger CF picture but was never noticeably phased or unduly worried; maybe feeding off my own penchant of downplaying it. I’m sure it probably helped that she had been a nurse on a busy hospital ward with all the patient caring and hard work that that entails.

Katie tends to go into nurse mode with my health issues, in order to not only assist me but to most likely protect herself from the ceaseless nature of handling CF. My mum was also a nurse so I chose well!

She shuts out my habitual coughing and has to manage her frustrations when an episode wakes her at night. She came into her own with my diabetes diagnosis; having had first-hand knowledge of injections from all her IVF cycles, which allowed her to understand and ‘feel my pain’. On occasions, Katie brings her work stethoscope home to listen to my chest for ‘crackles’ in my lungs. For most of our relationship, she has helped out with my physiotherapy and at times takes out any annoyances with her percussion on my body! Well, there’s got to be some fringe benefits!

It’s bizarrely liberating that I’m able to openly pop pills and do my insulin injection in front of my wife. Such acts that I normally keep hidden away from people can be conducted with a sense of freedom around loved ones. In this sense, Katie is one of the chosen few, the ‘CF circle of trust’, who I don’t have to hide my CF treatments from. Although not immune to the sights and sounds of my illness, she is someone that deals with it unflinchingly.

She has taken the largest hit on the childcare of our son Felix, especially the years of night time wake-ups. Katie has acted almost as a single mum when I’m away having stressful IV medication. IV courses exact the most out of our marriage either when I’m away and unable to help or when I am at home, but due to the nature of the drugs, I’m limited in what I can do around the house.
Katie also manages the vast majority of the household chores, regularly informing me that due to her washing exploits I’ve never ran out of boxer shorts!

It is these interventions that have enabled me to concentrate on my vast medical regime and helped me stay reasonably well, when it could have gone the other way.

Getting the balance right
Katie certainly doesn’t obsess over my illness and mollycoddle me. This I believe is a good thing as it doesn’t make CF bigger than our relationship; just something that needs the appropriate amount of daily respect and attention. I believe that there’s an appropriate balance of giving CF the due care it needs but not making it the be-all and end-all; and therefore bigger than the actual relationship itself.

She will reference it if I’ve just had a nasty coughing fit, hospital appointment or she can see my angst seeping out. We always discuss the outcome of each of my outpatient check-ups and she engages me as part wife part nurse.

As I hardly ever complain about it, she might be prone to thinking that I’m not annoyed and frustrated by my daily woes. On the very rare moments when I bellow “My CF is making me angry!” she knows that things must have reached boiling point. When I do ‘break my silence’ she instinctively knows to listen and support me.

On the rare occasions that I have broken down and cried in front of Katie, her resilience is affected and it sets her off as well. We can be defiant and resilient together but when the situation arises, we can also cry together and hold each other. Perhaps, that’s how it should be…

Katie and I have been through both thick and thin times in the last decade – we have traversed many traumatic IVF cycles of IVF, raised a busy boy, endured countless relationship stretching IV’s and battled with her debilitating post childbirth nerve damage. By navigating through the turmoil, we certainly are better than most at being able to identify and appreciate the good times.

Right beside me you are, I am, we are…

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

Yours cup half full.
Tim

Tim Wotton

Great news! As of early July 2013, this blog reached over 40,000 global visits. My book, charting the year leading to my milestone 40th birthday is on track to be published soon – I’ll let you know when and how to find it!

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.

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Unconditional

Mum enjoying her birthday gifts with me looking on

Mum enjoying her birthday gifts with me looking on

Love for your child burns deep. This unconditional love tends to plough an even deeper furrow when that child is sick or suffers from a life-threatening illness like cystic fibrosis* (CF)…

Last week my dear mum, Margaret Wotton, celebrated her 70th birthday. At a family engagement she received a fitting tribute highlighting some amazing facets of her life read out by her sister Jenny and my brothers Chris and Jez.
When it was my turn to pay tribute for her 42 years of selfless love and care for my CF, I was initially overcome with emotion and had to take a moment to steady myself. I stared at the words on my card but just couldn’t get them out…

‘Unconditional love and support’

Sometimes in life, words are just not enough to convey the depth of what you want to say and this moment proved no exception. I was choked by the utter devotion that mum had shown me and composure had to take a back seat.

For the last six years Katie and I have had our own taste of this unconditional love for our son Felix. Only this morning, the hug Felix gave me filled me to the brim with unbridled adoration.

How deep is your love?
The impact of a sick child on his or her parents and close family shouldn’t be underestimated. I’ve learnt over the years that it’s not just the person suffering who’s affected by the diagnosis of CF but the close family and friends are enveloped by it and have a crucial role to play.
As mentioned before in my blog post ‘Not alone’, my parents, brothers, Katie, family and friends have helped me enormously in my survival over the years.

People inherit genes from their parents. To have CF, a child must inherit one copy of a mutation of the CF gene from each parent. In other words, the child must have two copies of the gene with mutations to have CF. My mum and dad both carried the CF gene without realising and when they had children, there was a one in four (25%) chance of any offspring developing a form of the illness (there are over 900 variations ranging from mild to severe).

Over the years, my parents might have been prone to blaming themselves that their mutual genes had caused me to inherit the condition. Especially as their firstborn, Chris, was not suffering from it, they had no way of knowing that they were both CF carriers when I was born. I’ve always stated that there’s no blame to be affixed to anyone – it was just plain unlucky.

While dad got me playing sport which boosted my lungs, mum instilled the discipline in me not to miss my treatments. She also left no stone unturned in finding the best medical care – pushing the NHS envelope – by securing me the expert services of Dr Ron Knight in my early teens. This proved to be a defining intervention in my care as it led to my transition from stuttering health to buoyant lung function and playing field hockey for England schoolboys.

My mum has been a nurse throughout her working career, starting off at Great Ormond Street Hospital where she looked after children with CF. Was it serendipity that she had that experience and knowledge which helped her to diagnose and treat me? Unfortunately for mum, she got extra nursing homework coping with my ailments and medical needs.

A snapshot of my requirements included supplying bespoke powdered milk at primary school instead of the milk cartons that the other kids received. These cartons were often left out in the sun, so maybe I was better off with the grim tasting synthetic powdered version!
Enzyme powder had to be sprinkled onto my food to help me digest it, which always looked like there had been an extreme snowfall of dandruff. Mum helped to train others to conduct my much-needed physiotherapy when mum and dad were not around to help. Most notably she coached my lovely school teacher, Alan Dennis, ahead of a week-long trip to France and my cub-scout leader for an overnight cub camp.

In my early teens, when I was an in-patient at Brompton Hospital, mum stayed in the affiliated local accommodation so that she could be close-by and run errands for me – mainly to the nearest sweet shop – CF had to have some form of fringe benefits!

Mum fitted in my physiotherapy before school when time was tight and early evening when all I wanted to do was to play with my brothers. This must have been like trying to persuade the world-renowned footballer, Pele, to substitute off the pitch when he had already scored two goals and was hungry for a hat-trick. The easy thing would have been to relent and let me do what I wanted to do but she had to play the ‘bad cop’ on occasion to get her way. This in turn set the right tone for the independent ownership of my treatments such as the physiotherapy, nebulisers and tablet taking so that they became routine and second nature.

Mum guided me through a multitude of painful, stressful and frustrating times as we defied CF together; especially during over 60 intravenous (IV) treatments which were mainly conducted at home. Mum being a nurse and un-phased by this scenario and responsibility made a massive difference. This paid dividends as we traversed all the annoying complications that cropped up in the early years of IV long lines – blocked catheters, leakages of blood and antibiotic, rash and fever reactions to drugs – yes, we’ve been through hell and back countless times…

Indeed, her nursing ability underpinned the care and support I was fortunate to receive. From that vital early diagnosis at six months, to being prepared to do my physiotherapy, scour the NHS for better care, manage my IV’s at home rather than me being in hospital, to understanding my CF Related Diabetes from her days running a diabetic clinic at a GP surgery and reassuring me that I could cope with two major conditions. She was also astonishing in her in-house care and patience with my dad when he was diagnosed with Motor Neurone Disease right up to his sad departure last November.

I was a pretty good patient but sometimes I went off the rails and didn’t cover myself in glory, which didn’t make it easy for my parents. They would have had to hold their nerve and bite their tongues when I left home for university, especially in my first term when my health dipped badly; and during my 20’s when I was in full party mode, often in smoky venues, much to the detriment of my lungs and energy levels.

The name’s bond
Nothing was ever too much and my parent’s support and care was limitless. They wanted to help alleviate my suffering and make the horrible medical interventions as bearable as possible.

You tend to mirror the behaviour and attitude of your parents. Their desire to keep me well enforced my own willingness to maintain my health. I expect if they had given up on my chances of survival then it would have caused me to pack it in as well. Instead, their commitment drove my own commitment to the cause.

Since I flew the nest aged 18, outside of family events, I have spent more time back at home with mum and dad than my brothers; especially during the laborious IV sessions. This extra time with them along with our shared ambition to defy CF has definitely intensified our bond and kept us close.

Back to my tribute speech last Sunday. After a few moments, but what felt like an age, I did finally get the words out and they were thankfully well received. When I reflect on that moment of emotional strangulation, it’s not surprising with the journey we’ve been on together.

I raise a toast to my mum, Margaret Wotton, and her lasting legacy. Without her I wouldn’t have lived to 30 let alone beyond 40. She has given me 25 years more than I was expected to have on my diagnosis back in 1971. Without her, there would be no marriage to Katie and our child Felix wouldn’t exist. Without her, I would be ashes blowing gently in the wind…

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

Yours cup half full.
Tim

Tim Wotton

See below to view a film of a recent tandem jump for CF in Texas by my work director, Enda Logan. It’s moments like this that I know why I’m still here on this earth surviving the ravages of CF.

Enda’s fundraising page: http://www.justgiving.com/enda-logan

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website. http://www.cftrust.org.uk/

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