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.

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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.

 

The Shape of Love

I want to celebrate some major milestones and pay homage to the single-most important word in our human language… love!

This Friday 2 March, marks the 50^th golden wedding anniversary for my mum, Margaret and my dad, Douglas. Sadly, dad passed away over five years ago from the cruel Motor Neurone Disease but his love still pervades across our family and we feel his warm presence.

My parents all those years ago when having children, would have likely had dreams and aspirations for all their boys (elder brother Chris, my twin Jez and myself). Due to my chronic illness Cystic Fibrosis*, with a projected life expectancy of just 17 at birth, I wonder if their hopes for me realistically wouldn’t have been much more than plain survival.

Their love and support has always been readily available, all-encompassing and unconditional. Mum with her medical nous and determination and my dad for guiding me into playing sport are certainly the key reasons I’m still alive to write this blog post.

The road less travelled

These last few months have seen many challenges, proving to me that this is a weird, fun, interesting, unfathomable and brutal life we lead. As well as the prolonged harsh winter, I needed to succumb to a course of hateful IV treatment during January.

The IVs were split between Southampton with my mum and in London with Katie and Felix. I also was visited by both my brothers during this time. I even went to watch the film ‘Darkest Hour’ with Chris at the Southampton Odeon while wired up to my IV meds. My family’s combined love and that of my loyal friends enabled me to endure another dip into the river of IV hell.

Just before Christmas, I had to bear the tragic death of my good CF friend Helen Toghill, who died aged just 41, leaving behind her lovely 10 year old daughter. Words cannot do justice to how her loss is a shocking reminder of how brutally CF can envelop a sufferer and what it leaves behind. (For those eagle-eyed readers, I dedicated my last blog ‘One more try’ to Helen, before she became so fatally ill).

These last few months have also been underpinned by a search for a new job, always filled with stress, and a recent contract offer.

One special highlight this year was the invite to Guernsey in mid-January to host the Islands’ sports awards, deliver a speech at an education conference and taking part in a revealing interview on Modern Mindset Radio with Adam Cox (see links below).

What dreams become

Another significant milestone which is fast approaching is my (and Jez’s) 47^th birthday on Saturday 17 March, where we again try and fail to out-drink the Irish. That date dramatically signifies that I have lived and endured 30 years of life past my projected life expectancy of 17. For further context, reaching 30 used to be the Holy Grail for CF survival back in the 90’s and I’ve lost many of my good CF friends along the way.

Whatever hopes and dreams my parents had for me, their main one about survival came true. I am both delighted and surprised that I’m still alive and kicking 30 years past my original sell-by-date!

Hope springs eternal

‘Life is not measured by the number of breaths we take, but by the moments that take our breath away!’ Maya Angelou

I salute all my family and friends who have blessed me with their love and support during my life. I especially want to thank my mum and dad who gave me the gift of their true love which in-turn bequeathed me with all the hope and grit needed to continually defy the odds.

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

My spirited and lively YouTube speech at the Guernsey Sports Awards

My interactive and revealing interview with Adam Cox for Modern Mindset Radio

* 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.

 

One more try

As we countdown to Christmas, I offer you the gift of prose – a resilience poem – which I reckon all of us can benefit from…

I honestly believe that there are very few people who live a charmed life, despite appearances to the contrary.

We are all at some point faced with life challenges, such as the reality of losing a job, declining health, anxiety, depression and the ultimate leveller, death.

This year has seen the usual rollercoaster of events across my illness cystic fibrosis (CF)*, my CF friends and community: from survival against all odds, to the miracle of lung transplants to chronic bouts of suffering and sadly to deaths. Only this week, I saw on Facebook that two 20 year old CF friends had died within days of each other.

People who battle with a chronic physical or mental condition demonstrate that life is tough and can feel out of control. Underpinning everything is the harsh realisation that life is short, fragile but precious while it lasts.

Often our individual life challenges are obdurately fought in silence which can increase the feeling of isolation and despair, sometimes on a daily basis. When life is getting us down, we need the gift of resilience to see us through to another day…

‘In life sometimes prospects may seem darkest when really they are on the turn.’ Elbert Hubbard

An ode to resilience

I recently discovered a wonderful poem by British Canadian poet Robert Service, written in the early 20^th Century, ironically entitled ‘The Quitter’.

I was won over by its battle-cry prose, and used the poem during the conclusion of my speech at the Wantage Literary Festival in honour of the famous poet John Betjeman, who is synonymous with the event.

The poem does contain some old-fashioned language. For example, ‘It’s according to Hoyle’ relates to the 18^th Century writer Edmond Hoyle to mean an ‘appeal to authority’.

However, throughout its glorious prose, it poignantly explains that when life is tough, be determined to survive, don’t be a quitter! If ever there was a poem that depicts that daily mindset required to keep going against the tide, this is it.

For many people, some life challenges can understandably feel overly arduous. Even getting through the next hour, day or week can seem too much to stomach when spirits are horribly low and hope has been vanquished.

BUT, often the difference – as per the poem and based on my daily survival – is to have one more try. To get up and go again.

I hope you like the poem – you’ll all need it one day!

Wishing you all a happy Christmas and a healthy new year!

I dedicate this blog to my CF warrior friends Oli Rayner and Helen Toghill, who inspire me to keep on battling!

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?’)

Fantastic video – please watch my good friend Mark Phillips as he did a tandem sky dive for CF!

CF community – to see if CF patients and carers can be compensated to help scientists find a cure, please complete this short survey. 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.

TIM Talk

Exciting news… I have been invited to speak and promote my Cystic Fibrosis (CF)* book at the Wantage Betjeman Literary Festival in late October. Find out more…

A life battling the chronic conditions of CF and diabetes is full of challenge, heartache, frustration and pain. However, defying these illnesses every day has brought me a tremendous perspective on life, what to appreciate and what to let go.

It has also given me the golden opportunity of sharing my survival knowhow with others via all mediums. As well as this blog and my award-winning book ‘How have I cheated death?’, I am now an international public speaker at charities, government, pharmaceuticals and in the private sector.

Thanks to my elder brother Chris for recommending me to the organisers. It is a real honour for me to be speaking at my first literary festival in the afternoon of 25 October in Wantage (near Oxford).

Please click here to find out more about this renowned book festival and my speaking slot – if you are able to visit Wantage that day or can share with others, it would be lovely to have you there for what promises to be a special occasion.

Not only is it my first book event, I will have my dear mum Margaret, my brother Chris, family and friends in the audience. There’s no chance of me making anything up this time!

This is the blurb for my event:

‘Tim truly appreciates that life is fragile and precious. Born with the killer illness cystic fibrosis, he spends every day overcoming adversity against all odds. He typifies the resilience required to endure what cannot be cured while managing a normal family life and making every day feel extraordinary. Tim’s story ‘How have I cheated death?’ is a candid, funny and thought-provoking tale of the unexpected.’

The Dalai Lama said, ‘It is under the greatest adversity that there exists the greatest potential for doing good, both for oneself and others.’ I couldn’t agree more…

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.

Reach for the sky

Much has happened over these last few months to make me look up towards the heavens…

The expression ‘the sky’s the limit’ is used when there are no limits to what something or someone can achieve and to demonstrate that anything (an ambition, aspiration etc.) is possible. This is why this term is so pertinent at the moment…

Health
As of July this year, I have gone 21 months without a major intravenous (IV) treatment to combat my cystic fibrosis (CF)* and diabetes. It was unimaginable in my 20’s and 30’s that I could go for this duration without one of these horrid IV’s, especially when for most of my life I was habitually having them two times a year.

This ‘good run of health’ is not a straight line however. Everyday requires two-three hours of medication and I’ve battled through two winters and a few debilitating colds. Because there’s no remission with my conditions, I stick to the mantra that ‘I’m only as healthy as my last treatment’ and I certainly never take my health for granted. Indeed, I’m constantly aware of the multitude of potential CF banana skins which could hasten deterioration in my health and necessitate an IV. I therefore quietly celebrate this enforced non-IV milestone.

Exercise
One huge ‘cause and effect’ with my health is the amount I can exercise and I have been jogging in the local park, going to the gym and playing some summer league veteran men’s hockey while recovering from a recent knee injury. While there is breath in my body, I will strive to keep my lungs active.

Marriage
As of 19 July, I will have been married to Katie for 14 years. We have been through a lot together (and reviewed our vows a few times!) but our relationship gets richer with each passing year.

Sharing my story
My CF memoir ‘How have I cheated death?’ continues to be well-received and each week I am sent positive feedback from around the world. My public speaking opportunities are also going well. I have been invited to speak and promote my book at the Wantage (not just) Betjeman Literary Festival on 25th October. Having never presented at a book festival, I am proud to be invited.

Cloudbusting
England in June and July has enjoyed some pleasant warm weather and I’ve been particularly struck by the stunning cloud formations in the sky (see photos). I take regular time out to watch the skies; be still, turn my brain to silent and feel present. One favourite pastime with my son Felix is to lie down and observe the clouds together. These are special moments that cost nothing and the clouds are always there waiting for us – we just have to look up!

Fly from the sky
I am always deeply touched when family and friends fundraise for CF and indirectly for me. On 22 July, my good friend Mark Phillips is doing a tandem sky dive for CF. The sky really will be his limit and I admire him for this brave act to raise money for my condition. Mark is close to hitting his fundraising target, so any kind donations to help him fly like a bird would be much appreciated here.

A new life
People with CF are not meant to meet each other in person due to the risk of cross-infection but our bonds are amazingly strong as we understand the fight and resilience needed to endure what cannot yet be cured. One of my best English CF friends underwent a lung transplant on Friday and all seems to be going in the right direction for him, but it’s early. My thoughts are with him for his recovery to start a new life with healthy lungs.

Reach for the sky
The film ‘Reach for the sky’ about Douglas Bader, played by Kenneth More, who lost both legs but led Hurricane squadrons in WW2 was one of my late Dad’s favourite films. Dad (also a Douglas) has been deceased for over four years but I know he’d take great pride in reading this blog and knowing I used this title. He’s forever in my heart and that of my mum and brothers.

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.