Snakes and Ladders

Life has imitated art in the latest instalment of my survival against all odds with the chronic illness cystic fibrosis (CF)*…

I’d expect everyone to be familiar with the ‘Snakes and Ladders’ board game. Landing on a specific part of the board can allow you to take a ladder, which positively moves you up the board or conversely you can land on a snake which negatively drops you down, sometimes all the way back to the start.

Transmuting this ‘game’ to real-life brings an interesting reality. In my life battling the daily hardships of CF and diabetes, there seems to be only a few ladders and always the potential for snakes to drop me down. The snakes are long and can be deadly and the ladders are shorter and are often offset by the trapdoor of a near-by snake.

A new hope. I started the new drug Symkevi in late November 2019 after a heart-breaking four-year wait caused by Government and Pharma wrangling’s over cost. After three weeks on this ‘wonder’ drug I could feel a few small improvements in my lung function – this was a small ladder.

Disaster struck days before Christmas when I came down with a nasty virus which brought on high temperatures, cold symptoms, zero energy and days of listlessness. The tsunami effect on my lungs has been horrendous with barbaric coughing fits which my wife Katie claims were the worst she’s heard in our 20 years together.

A huge snake dropped me from mid-table where I had a small level of hope back to the depths of despair and concern for my very future. It’s been one of the worst trap doors of my life.

This has necessitated the need for an intensive intravenous (IV) treatment course involving four IV meds each day, each lasting well over an hour. These treatments sit alongside all my usual treatments, which make for a long day starting at 7am and finishing at 11.30pm.

Finding meaning in my suffering. It just so happens that last year I have read a few holocaust books, starting with the young heroine Anne Frank and most recently Viktor E. Frankl’s Auschwitz testimony ‘Man’s search for meaning’.

This particular passage resonated with me…

The way in which man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult of circumstances – to add a deeper meaning to his life.

According to Frankl, who went through hell on an hourly basis for over three years in different concentration camps; one can discover the meaning in life in the attitude taken toward unavoidable suffering. In accepting the challenge to suffer bravely, he felt life had constant meaning.

How this applies to me. No one can relieve me of my suffering or suffer in my place. The way I bear my suffering is a genuine inner achievement and thus does provide my life with meaning and purpose.

As I navigate this uncertain path, I have taken consolation from a Persian adage reflecting the temporary nature of the human condition – whether it be when life is going well or badly – ‘this too shall pass’.

Life ultimately means taking the responsibility to find the right answers to its problems and this IV treatment is the first step in regaining more strength and lung function in order to keep climbing up the board in search of more ladders.

 

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

Hear more of my thoughts on how to find meaning & gratitude in adversity via my own podcast ‘The Gift of resilience, calm & joy’. It’s available on most podcast platforms including Apple, Google & Spotify. Do subscribe, listen and tell others. Thanks.

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

Deal or No Deal

There’s not just a Brexit ‘No Deal’ that’s deeply frustrating and harmful going on in the UK. Read on to find out how it’s affecting people like me with the chronic lung illness cystic fibrosis (CF)*…

A different version of No Deal is needlessly causing more suffering and costing hundreds of lives for people with CF. This has been going on for nearly four years and in that time over 250 CF people in the UK have succumbed to the disease including my very good friend Helen who left behind her 10 year old daughter.

This relates to the ongoing impasse taking place for the majority of the UK about us access to the life-changing drugs (Orkambi and Symkevi) from the pharmaceutical Vertex, who are in a long-term negotiation with our NHS and government to find a deal that all parties can accept.

These drugs have been made available to CF people in Ireland and Scotland and on a compassionate basis to others in Wales and England. CF friends who are on them have categorically told me how helpful they are to improve their lung function and energy levels while reducing mucus production (which causes our persistent coughing) and hospital admissions.

Here in England, the government are playing a passive role and the NHS won’t accept any deal that Vertex offer and Vertex won’t accept what the NHS are offering… hence the No Deal situation continues while we CF people suffer irreparable lung damage while this carrot dangles over us.

I doubt there’s ever been such a long series of ‘intensive’ meetings between different parties with zero action and positive results. If just one of these negotiators had a child with CF, they would have wrapped this up ages ago!

Both parties need to meet in the middle to get a deal but it appears that each party expects the other one to move more.

 ‘You make a living by what you get. You make a life by what you give.’ Winston Churchill

Re this famous quote, it appears the government, NHS England and Vertex in the UK are doing a lot of the former but precious little of the more meaningful latter.

In this four year period, my lung function has dipped and at 48, it’s not going to improve with the existing medication available to me. Also, I’m battling through on fumes of energy and hope, trying my hardest not to let my anger at this No Deal impasse do me any long-lasting emotional damage. Taking each breath is getting progressively harder for me and thousands like me.

How it feels to struggle with breath

As a reminder of how tough it is at times for people with CF to draw a breath, I wanted to promote the ‘Strawfie Campaign’ and quick exercise which I’d like all the ‘healthy’ readers to try for one minute:

• 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?

Watch my speech at the Guernsey Sports Awards last year where I get the audience to do the Strawfie Challenge themselves (exercise starts at 20:00 in the video)

A matter of life and death

So when you hear the words ‘No Deal’ being mentioned in the news, spare a thought for the grim life and death struggle that myself and thousands of UK CF people are going through waiting for an access deal. The prize of a deal for us means a chance to breathe a bit easier and it gives us renewed hope that we may still have our tomorrows to go to school and university, get a job, get married, become parents, feel unbridled joy, sleep without coughing fits and exercise without pain.

What’s it going to be – Deal or No Deal? Life or death?

 

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

 

For more information on the Strawfie Campaign visit the website and the accompanying song ‘Breathe with me’

Great news! – Please check out and subscribe to my own podcast ‘The Gift of resilience, calm & joy’ focusing on the power of the mind, mindfulness and presence to overcome life & health challenges. It’s available on most podcast platforms including Apple, Google & Spotify.

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

The Gift

This is perhaps the greatest gift you can ever give yourself… and it costs nothing!

I’ve started a new and exciting podcast focused on ‘The Gift’ of presence and the power of the mind to overcome life and health challenges, bringing more resilience, calm and joy.

I’m doing this to share my hard-fought wisdom of defying the chronic illnesses Cystic Fibrosis* and Diabetes for nearly 50 years, in order to help others, especially adults with disabilities and anyone who is finding life a struggle.

I am living proof that even on the hardest days, there are usually moments worth living for.

I plan on interviewing remarkable guests from all walks of life who can help me on my journey to learn more about the power of this gift and how it can help everyone.

Why the gift?

There are many reasons why I’ve been drawn to the gift. Each day is a ‘gift’ – that’s why it’s called the present, plus being more in the moment and mindful is one of the most important gifts you can ever give yourself!

Also, from my experience, the greatest gift you can ever have is your health. I know first-hand that the things that some people take for granted are being prayed for by others.

My podcast ‘The Gift of resilience, calm & joy’ is available on the main podcast platforms including iTunes, Google Podcasts, Overcast and Spotify. See below for all the links…

How you can help

Feel free to subscribe to the podcast via your phone or computer, give me a rating and importantly, tell others who you think might benefit as podcasts get really powerful through word of mouth via trusted friends.

Separately, if there is any potential guest (with life or health challenges who has a strong message about the power of the mind and presence) who you know who might be perfect for me to interview for the show, please let me know.

Here is my YouTube intro video so you can see me sharing the intention of my podcast.

Thanks very much in advance.

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

Podcast platforms that ‘The Gift’ is published on:

Apple/ iTunes

Anchor

Google Podcasts

Spotify

Breaker

Pocket Casts

RadioPublic

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

No choice

Quite often in life, you only find out the full extent of your inner resilience and fight when you have no other choice…

The definition of a warrior, especially in former times, is a brave or experienced soldier or fighter. A warrior can also mean ‘someone who is engaged in some struggle or conflict.’

I need to let you know that 2019 hasn’t been plain sailing for me as I have had a dip in my cystic fibrosis (CF)* health, lung function plus lost some weight. This was mainly due to the cold I caught in March which must have been a horrible bug. I’m still retaining my good looks so I’m only mildly panicking.

I used my full playbook of coping strategies for a few months to overcome it while still working in London and exercising but come June, I had to ‘take a knee’ in fighting parlance.

I needed an intravenous (IV) treatment for two weeks. I have had over 100 of these separate IV sessions before so knew what to expect but each time is traumatic. Indeed, the nurse who put the PICC line in was staggered at how many line scars I had on both my arms… I reckon that if you did dot to dot with them, it would spell out ‘CF’!

So for the first two weeks of June, along with my usual two hours of meds, I did three times one-two hours of IV antibiotic drugs.

It was mentally fatiguing as well. The constant rain in early June in the UK hampered my recovery as it always makes me cough more and made it hard to assess my progress throughout the IV.

One aspect which always helps is the love and support of my wife, mum, brothers and friends as I cannot do it alone.

For the first time ever during an IV I went to the gym to push things along although it was hard to swing my right arm (which contains the PICC line) while on the treadmill. It must have looked like the running style of Phoebe from the Friends TV show or imagine Admiral Lord Nelson one armed on a treadmill!?

After two weeks of this heavy-duty medication, I had a doctor’s appointment to assess the status of my lungs. As I drove into the hospital car park, it started to rain heavily which I knew was going to reduce the quality of my breathing tests.

I did 15 (yes that’s 15) blows on the respiratory device to improve my breathing scores. The health care assistant was shocked that I kept going and going and going. It got very hot in the room as I got more fired up to produce better results but I was determined to score a higher score. It still wasn’t brilliant but a bit better than when I started. It was enough to stop the IV and return to ‘normal’ life.

As I always do, the day after my IV finished I was back to the gym to give my lungs a workout. I’ve been going every three days since and aiming to extend my running duration plus do my full weight programme to manage my osteoporosis symptoms.

“A champion is someone who gets up, even when he can’t!” Jack Dempsey, World Heavyweight boxer

I’m just one example of what it takes to defy an illness that is relentless and kills far too many people in their youth.

There are many more like me out there around the world who go through similar battles every day. We have no choice but be warriors in order to survive.

I’m honoured to be one of 65 (sixty five roses is synonymous with cystic fibrosis) CF Warriors to feature in a new inspiring book collated by CF adult and my friend Andy Lipman: ‘The CF Warrior Project’. This book (available on Amazon) features heroic stories of CF men and women from around the world who have endured what cannot be cured and achieved amazing feats despite their daily struggles.

We are constantly engaged in a physical and mental conflict but, as we have no choice, we just soldier on…

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

Great news! – I have launched my own podcast called ‘The Gift’ focusing on the power of the mind and presence to overcome life & health challenges. It’s already available to subscribe on some podcast platforms like Google, Anchor & Spotify and will be available soon on iTunes… Click here for my promotional video.

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

 

In Dreams

People with chronic long-term health conditions like cystic fibrosis (CF)* will tell you that they never get a day off. Well truth be told, if they are committed to defying their medical odds, they probably won’t get the night off either, especially in their dreams…

Apparently, the whole brain is active during dreams, from the brain stem to the cortex. Most dreams occur during rapid eye movement (REM) sleep.

Everyone dreams during sleep, but not everyone recalls the mental escapade the next day, and scientists aren’t sure why some people remember more than others.

I very rarely remember my dreams, so when I do, it’s a big deal.

In a recent dream, I was at a social event (that may not surprise many people that I was socialising in my sleep!) and this event extended from the day into the evening. (Again, this won’t come as a shock that I ‘pushed on’ into the evening).

During this dream, I seemed to be desperate to find a way to temporarily leave my friends to go to either my home or a hotel room so that I could do my medical treatment. This would include using equipment like my nebuliser and doing my physiotherapy to help clear my lungs of mucous, which clog up CF lungs.

I would also have been looking to check my blood sugar levels because my diabetes has robbed me of spontaneity and I would have wanted to know my levels, especially as I was drinking alcohol at this party.

For every twist and turn of this social event, I could feel the deep tension in me that I couldn’t just enjoy the festivities like all those around me at the party. To enjoy the duration of fun, I had to build into my early evening the opportunity to do my medication. After all, doing my treatments enables me to live my life.

As well as this, I was coughing throughout the dream, as I do throughout every day when I’m awake.

In the end, I never made it to a venue to do my much-required medication because my dream was brutally terminated by me having an actual real coughing fit that shook me out of my sleepy stupor.

On awakening, I lay there both amazed and surprised that the memory of the dream had been so vivid. But my overriding emotion was this…

When you suffer and endure a condition like CF, you are never off the clock. Even when asleep and dreaming, I am that ‘ill person’ and I don’t get time off from CF and diabetes. I cannot even be healthy and not cough in my dreams!

So ingrained in my subconscious is my daily regime and regular medical interventions that I know I have to be compliant whether I’m awake or not!

I woke up with a rye smile that I’m never off the CF grid and bemused that even in my dreams, I cannot be healthy, spontaneous and care-free (and drink all day uninhibited).

This is not a pity-party nor is it a sob-story. This is just my reality.

I didn’t feel upset nor did I feel any joy. I was just numb to my health situation that’s been ever-present in my life for over 48 years (I turned 48 on 17 March – yay!) and counting…

I’d say that the majority of my healthy peers do (understandably) get peeved and frustrated when they have a short bout of illness, like a cold or flu. Just imagine how they would feel if they were always sick, even in dreams?

 

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

Day in the life of…

What would be the image that conveys your daily life? Here is mine showing my battle with the chronic illness cystic fibrosis (CF)*…

They say a picture paints a thousand words and this ‘day in the life of’ really hits home.

Every day, without fail, this is the ‘day in the life of’ someone with CF and diabetes.

My daily pick n’ mix of 40 tablets comes in all shapes and sizes, including some extremely colourful pills, which break up the monotony. I employ many shrewd tactics like bundling a lot of the smaller pills together for just one swallow and taking my time for any horse size pills!

This smorgasbord of medication includes antibiotics, inhalers, nebulised treatments, insulin injections, steroids, supplements and vitamins.

By the way – this is not a complete picture because it does not include the physiotherapy sessions at least twice a day (each lasting over 15 minutes) and the horrendous intravenous (IV) therapies which account for four to six hours of a day.

There are no days off this regime, no remission; it is relentless and all-consuming. Think of it as a scary rollercoaster ride that you can never get off.

“One more bloody thing!”

This phrase is often screamed by me internally or shouted out in frustration when this regime feels never ending and gets the better of me. After all, nobody is perfect and I defy anyone to have this quantity of daily treatments and to never get annoyed.

To take this many pills throughout the day has required me to form strong habits and station the different medication around the house and in my work and social bags, so that I have consistent triggers and reminders.

It’s sad to note that even if I am 100% compliant with this regime, it only gives me the health and lung function that the majority of people would despise. I certainly never take the health I maintain for granted.

Imagine trying to fit this quantity of medication into your day? Envisage how these treatments would be compatible with your daily life, work, family and exercise?

Another integrated factor is the effect that this level of medication and unstinting regime has on the energy levels and mental health of a sufferer, especially on special days of the year like one’s birthday, Christmas and anniversaries. It’s therefore understandable that it regularly becomes all too much for us and can feel depressing…

A new hope

Now imagine adding more pills to this mix?

There is some new medication (called Orkambi and Symdeko) from the biotech company Vertex which is available in the UK. These ‘precision treatments’ focus on the underlying cause of the illness rather than just treating the symptoms. Because of that, they are more likely to improve my lung function, reduce chest exacerbations and limit the need for expensive and time-consuming IV therapies.

But alas they are not currently funded by the NHS, although talks are ongoing to break this deadlock or should I say dreadlock.

As most people with chronic conditions have a dark sense of humour, the crucial thing for the CF population is that these Vertex treatments are ‘just’ pills (and pretty coloured ones to boot) so it will be an absolute doddle to take them and easy to add to our ‘forty-a-day’ habit.

I can certainly find some space on my ‘day in the life of’ image for four more tablets!

Picture perfect

I am not publishing this post to seek pity from the non-CF community who read this blog, but just to improve the understanding and appreciation of CF, what we go through and the incessant maintenance required.

One of the biggest hurdles in this CF life is our interactions with the non-CF community. When I reveal my condition to strangers at work or socially, the majority just glaze over with what I’m telling them. Perhaps this ‘day in the life of’ image should be shown in the future?

 

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

 

Worth a watch> My illuminating interview with the marvellous Adam Cox on Modern Mindset video where I share more about my medical regime, as well insights about my survival secrets, positive thinking, how living in the moment enables my life & lessons learned at work.

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

Well

Where does one go in challenging times? The answer lies within…

In the UK, we endured a tough and prolonged winter. For me, this was punctuated by one of my punishing IV treatments for my cystic fibrosis (CF)* earlier in 2018. There was also an extensive recovery from a severe cold I succumbed to around Easter which was magnified by the adjustment to a longer work commute on the London Underground.

So harsh were the impacts on my lungs from this cold, that my wife Katie had real concerns and felt it was the worst my cough had been in our 18 years together; and the Richter scale on that is pretty advanced.

To suffer such a cold after battling through yet another IV felt very frustrating and deflating. Life is, as always, all about timing – bad and good.

Fortunately, we enjoyed some early-Spring sunshine on a family holiday in Lanzarote where I was able to soak up the sun, which brought immediate benefits. Importantly, by walking to the local marina and using the hotel gym treadmill to keep exercising my lungs, it allowed me to stage my latest health Houdini act.

All the time, I never wavered in telling Katie, family, friends and most importantly, myself, that I would overcome this tricky period to restore my previous levels of well-being (which is by the way a level that most healthy people would despise).

To the well

I was drawing from my health well in order to feel well again. The reality is that I’ve been going to the well many thousands of times over my 47 years with these physical and mental health revivals. But it’s not always clear how much I’ve got left in the proverbial well.

In my younger days the ‘water’ – the elixir of live – in my well was at the top and easy to draw from whenever I required, but over the years the well has been progressively depleted.

During difficult and stressful times, I sometimes cannot see the water anymore in my deep well, but hope that there is enough left for me to draw upon. But improved health through my medical commitment, regular exercise and positivity gently restores my waters.

What was invisible miraculously returns.

This latest health comeback has been positively enriched by happy times such as my son Felix’s recent 11^th birthday, attending fun sports events and it will hopefully be maintained through all the wonderful family and friends events that I’m looking forward to over the summer months.

How deep is your well?

‘When the well’s dry, we know the worth of water.’ Benjamin Franklin

There are times, we can lack a proper understanding of and appreciation for something until it is no longer available to the standard we need and expect. The same rings true for the contents of our well.

I know many healthy people who drew too much from their wells before realising that they’re physically or mentally spent.

Indeed, when people ask you: ‘Are you well?’ they could equally be asking you: ‘How is your well?’?

I don’t know how much is left in my well just as much as you (the readers) don’t know how much is left in your wells. All I can ever do is physically and mentally top up my well whenever I can – fix the roof while the sun is shining – so that I’m ready for any eventuality.

Author’s tip: Look after your well to keep well.

 

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 (author of Award-Winning CF Memoir ‘How have I cheated death?’)

 

WATCH: My spirited and lively YouTube speech at the Guernsey Sports Awards

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.