Gone but not forgotten

Occasionally something will come from leftfield, stop you in your tracks and cause deep emotion and reflection. I had one such moment recently which I want to share with you…

I was in St. James Park, London, relaxing in the autumnal sunshine during a break from work, when I noticed on a Facebook forum a trailer for a film documentary about the amazing Mallory Smith, who lived life to the fullest while battling cystic fibrosis (CF)*.

Before she died, aged only 25, Mallory gave her mum the password to her video journals chronicling how she felt during her life-long struggle with the condition. A film has been produced from these journals, called ‘Salt in my Soul’.

I sat there watching and re-watching this short trailer with tears running down my face, seemingly frozen in time, with flashbacks of how I felt on many occasions battling the same illness for 50 years.

It brought back some dormant feelings that I had not properly felt for the last 15 months due to the positive impact of the ground-breaking drug Kaftrio.

Before starting Kaftrio in September 2020, I really was on a steep health decline with failing lung function and reduced energy. My quality of health was very poor.

I have little doubt that I would’ve started using oxygen and been added to the lung transplant list, with all the risks of finding a donor, organ rejection and death.

Back then, I was up for at least an hour every night coughing like a demon, using a towel across my mouth to suppress the barbaric noise, so as not to wake my wife Katie and son Felix.

The ‘end’ was on my mind more often than not; magnified by the huge dip in my health in early 2020 and the deaths of other CF friends around the world.

Thinking about how I would say goodbye to my family and loved ones was too tough to imagine so I fought it off with positive thinking, mindfulness, meditation practices and clinging onto hope for a new drug to ‘rescue me’ from the hell that was enveloping me.

In the sporting world, it’s common to say that it’s ‘the hope that kills you’ but in my worrying situation, it was ‘the hope that kept me alive’!

Since taking Kaftrio and having gone through the purge (of clearing the mucus from my lungs for a few months), I now hardly cough at all, which is amazing and surreal. Plus, I have more energy. I can play my beloved field hockey again and now play in a team at weekends with my son Felix!

My sleep is better (despite snoring, which is a side effect of Kaftrio) and I have no more need for that towel by my pillow at night to suppress the coughing fits. Indeed, my quality of life has improved beyond expectation.

The drug cannot fix all the years of lung damage but what its given me is worth its weight in gold.

Gone but not forgotten

The person I was before Kaftrio and the very real concerns of my impending demise are currently out of sight but they are most definitely not out of mind. Watching that film trailer reminded me of that in no uncertain terms.

My feet are staying firmly on the ground. I don’t take any of the recent days of better health for granted.

More than ever, I know that life is impermanent. My health could still revert back to how it was because we don’t know how long the positive effects of this new drug will last.

I want to honour the memories of my CF friends and angels like Mallory who sadly were unable to benefit from Kaftrio but deserved to, just as much as me.

I appreciate that every single day is a blessing – a gift with abundant possibilities. I’ll make sure to make the most of this new beginning, however long it lasts.

This post is dedicated to my CF friends who have passed away who are also gone but not forgotten.

Wishing you all a wonderful festive holiday and healthy 2022!

If you watch one thing today > ‘Salt in my Soul’ film trailer. The film will be available on streaming services from late January 2022.

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.

Free at last

It’s been a year since I started the cystic fibrosis (CF)* wonder drug Kaftrio and a lot has changed for the better…

Here’s my Top 10 list of positive changes:

1. I have more energy and have gained some weight.
2. I rarely cough at all now compared to previously coughing most of the day and night. I don’t suffer from the habitual choking episodes at night, where I felt close to never catching my breath!
3. I have not needed an Intravenous (IV) session to re-boot my lungs and remove chronic infection since February 2020 and it’s not even on my radar to even need such a treatment.
4. I have reduced some of my treatment and tablets burden
5. I have been able to maintain and incrementally improve my lung function and fitness via regular exercise.
6. I was still able to run twice a week during the winter when I was forced to run outside in the cold due to gyms being closed during the many lockdowns. I hadn’t been able to run outside in the winter months for well over 10 years.
7. I felt fit enough to be able to re-commence playing field hockey after a break of two years.
8. I was able to play whole games of hockey for the 1^st time in over a decade and felt like I could be competitive on the pitch, rather than just existing.
9. When I’m playing, I never need to cough up mucus, which was a real problem for the majority of my previous 40 years of playing.
10. As well as being double vaccinated, I feel more protection should I ever catch Coronavirus or any future infections.

Tim with Katie & Felix in the Isle of Wight, July 2021

For transparency, I’m far from cured and I still have some health challenges:

1. I still take over 30 pills a day and do around 90 minutes of different treatments (including diabetic care) per day.
2. Kaftrio does not reduce the 50 years of lung damage so I will need to wait for a different medical intervention for that one.
3. There has been a one significant side effect to navigate which has caused me different issues and I’m still looking to find solutions for it.
4. I also got injured (on purpose) by a hockey opponent back in June and had to have 4 stiches in a vertical wound in my right kneecap.
5. I am beginning to feel the effects of loss of hearing caused by a number of medications (which I have now stopped taking)

Tim having just played a full game of hockey for the 1st time in a decade, June 2021

Overall, I feel blessed with the better quality of my life, being able to take deeper breaths, exercise with more energy and the positive outlook for my life with my family and at work. I’m not free from CF but I feel free at last…

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.

End of the beginning

After a lifetime of defying the chronic lung condition cystic fibrosis (CF)*, this week I turned 50 and with it came new beginnings…

For my vintage of CF adult, getting to 30 was the Holy Grail. When I made it to that age, I then realised that 40 was a possibility. Becoming a husband and a father in my 30’s gave me extra motivation to keep going for a long as possible.

10 years ago, I started this ‘Postcards from Earth’ blog, as I counted down to my momentous 40th, a rare milestone for people suffering with CF. 50 feels even more of an achievement as my health has deteriorated during this time.

The last decade has gone quicker than any preceding one but I’ve achieved a lot – from publishing my memoir and Gift podcast, to public speaking engagements, to becoming a gym fanatic, working hard as a comms manager in London, losing my dad and many CF friends, building fun family memories with Katie & Felix, shielding from them during the early stages of Covid, to starting the new CF wonder drug Kaftrio!

Celebrating the big 50 with a glass of fizz!

I had a great birthday on Wednesday 17 March, despite the social restrictions. Katie made it a very special day and I met with my lovely twin Jez for a walk, had a visit from my Uni friend Ben and all day long, I received cards and gifts.

There was also a family Zoom call with my mum and brothers (Chris & Jez) and an evening Zoom some Uni friends, which was fun. This was all washed down with champagne!

All the love, care and support I receive thrills me to my very core – thanks to everyone!

Recently, I was asked by the CF Trust: Did you ever think you would make it to 50?

My answer was…

I was extremely determined to survive come what may, which has helped me survive to this amazing milestone.

It’s been a case of hoping for the best but making sure I respected the illness and all the possible CF banana skins, while making sure I took CF on.

I have made many mistakes along the way with my health care and over-doing it socially. I’m not a paragon of virtue but I did learn from these mistakes and quickly learnt what would help me in the long term.

The holy trinity for my survival has been 1. Utter commitment to my medications, 2. Regular exercise to keep my lungs active and 3. Positive mental attitude. I need all three in harmony because just one or two of these ingredients would be no guarantee for my survival.

Starting this blog and having my CF memoir ‘How have I cheated death?’ published in 2014 added to my commitment to keep pushing the barriers.

‘How have I cheated death?’ still resonates with me as I’m now 33 years beyond the projected age I was due to die from CF. It’s an amazing age to reach, but to be honest, I hope there’s a long way to go still. I am now counting up to 60!

Getting to 50 is most definitely the end of the beginning!

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

Yours cup half full.

Tim

Tim Wotton (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.

Optimistic

As challenging as life is right now with getting through the pandemic, I have reasons to be optimistic…

My health has received a boost. The game-changing drug Kaftrio I started taking for my cystic fibrosis (CF)* in September continues to enhance my quality of life as well as incrementally improve my lung function & fitness.

I cough a lot less which has helped my sleep pattern & reduced the high levels of anxiety I felt with the concern of waking my wife & son in the night with my barbaric coughing fits. Pretty much every night for over 30 years, I have endured this horrendous night time routine, so to have this removed is as close to a heavenly gift as I know.

I’m able to exercise more. Despite the ongoing lockdown forcing me to run outside in the winter months, I have been able to increase how far I can jog before I need to stop to re-gain my breath. I want to be clear that compared to healthy people, I’m not able to run that far. But for me, this improvement brings me hope, especially when I couldn’t walk up a flight of stairs a year ago after I caught an awful virus which decimated my lungs – was it an early version of Covid? I’ll never know, as the anti-body test last June was negative.

I’ve had my first Covid vaccine dose. Two weeks ago, I had the AstraZeneca vaccine jab in London & will get the follow-up dose in the next 6-12 weeks. This has started the process of having more protection against catching Covid, which is massive, as I’m shielding away for the foreseeable future. Indeed, my wife as a nurse, has also had the Pfizer jab, so we may be the most vaccinated home in the UK!

Being back at home with my wife & son this lockdown also helps our collective positivity & family dynamic.

I feel positive by tackling this pandemic day-by-day. Rather than get dispirited that the future looks bleak, I feel calm by being upbeat on a day at a time basis; being grateful for what I have rather than what I don’t have. I’m only human & still have tricky mental moments, but I have learnt through meditating in nature, to eliminate these dark moments before they take root.

I dress up when working from home. As someone who’s a bit of a dandy, it’s gut-wrenching not to dress up for my job in London. For the last six months, I have been wearing nice shirts and waistcoats while sitting at my home desk. I do wear trousers just in case you wondered if I was naked from the waist down! It’s another way to make each ‘groundhog day’ feel a bit special.

Lastly, another good reason to be positive is that the word ‘Optimistic’ has my name in it, so I need to live up to it!

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.

Something Changed!

I recently started a new cystic fibrosis (CF)* wonder drug called Kaftrio. Here’s what happened…

At 49 with a lot of lung damage from battling CF and diabetes, I would cough throughout the day and night, struggle to breathe deeply and to exercise beyond 100 metre sprints.

My daily two hours of medication was all consuming but only gave me health that most people would despise. Hour plus long coughing fits during the night (trying not to wake up my family) were commonplace.

I felt I was battling to stay afloat in a big ocean. Close to drowning with CF, all out at sea, looking for someone or something to save me and take me to dry place and a brighter future. Every day, I was just keeping afloat with hope as my biggest motivation to not go under the surface and drown.

In early September, I began taking Kaftrio – two tablets in the morning and one at night – here is the rollercoaster diary of what happened next…

Saturday 5 Sept – Day 1

I dreamt of taking the new yellow pills all night. I knew this was an incredibly important milestone in my life and my survival.

I took the morning Kaftrio pills with full fat milk (fat is needed for absorption)

I felt things in my lungs change after only 20 minutes! Nothing has been this fast paced in my life. The ‘purge’ of my lungs was beginning and it was instant.

I was coughing up mucus all day long.

It was like being on IV drugs but without a PICC line in my arm and hours of treatment.

It was utterly draining and I had to lie down for some of the afternoon.

It was a tsunami of phlegm coming up! This definitely felt out of the ordinary and so different to any other medication I’ve had.

My other CF meds felt like pea shooters compared to this cannon!

The evening dose (blue pill) is taken with my meal and also needs fat for absorption.

Night-time was challenging as the coughing continued throughout the night.

Sunday 6 Sept – Day 2

Very similar day again. Had to hold my nerve that this was helping me as it felt counter-intuitive to be coughing so much all day long.

Instinctively I knew I had to rest and go for a tame walk instead of attempting my usual weekend run.

Headache and itchy skin so took paracetamol and an antihistamine.

By the end of day 2, I felt I was coughing less (less barbaric)

Monday 7 Sept – Day 3

Felt my lungs ‘bubbling up’ in the middle of the night and so ensued my ritual of going downstairs to cough so as not to wake my wife who is a snr nurse and needs her sleep.

Worked from home and it was a busy day interrupted by my need to clear my lungs.

Managed 2 local walks in the park inc. walking up 2 inclines.

Tuesday 8 Sept – Day 4

Broken night’s sleep again.

Big coughing fit in the middle of the night but interestingly not much mucus came up this time.

In the morning, I felt I had a bit more breath to do my weights.

Getting coughing spasms out of the blue – one made me abruptly finish a work call!

Less mucus coming up overall.

Wednesday 9 Sept – Day 5

Worst night’s sleep for a while with a barbaric coughing attack keeping me up for a long time.

Feel very jaded but felt desperate to see if I could run any easier, so at lunchtime, I went for my first run since starting Kaftrio, with shuttle sprints in the local park. Good news – I could run slightly further on each sprint and didn’t cough as much afterwards or feel completely out of breath!

Thursday 10 Sept – Day 6

Still the similar coughing attack at night to endure.

Did my weights in my bedroom which felt slightly easier… perhaps I’m gaining some extra strength!

Another avalanche of coughing throughout the day… but the mucus in my sputum is becoming less and less.

Friday 11 Sept – Day 7

Horrendous night’s sleep – one coughing fit woke me from a deep sleep and I struggled to get back off to sleep.

Busy work day on poor sleep – just about got through it. Kaftrio is tiring for sure.

Saturday 12 Sept – Day 8

Took a sleeping pill overnight to force a fuller night’s sleep, which helped.

Did my morning weights session and then some mid-morning shuttle runs in the park. Felt I could run a bit further than before and coughed less after each sprint.

Feel like I have a bit more energy.

My diabetes is improving as well – my blood sugar scores are lower.

Sunday 13 Sept – Day 9

Slept better. Didn’t have a coughing attack during the night.

While out walking in the afternoon, I was able to run up 3 inclines in the park!

Monday 14 Sept – Day 10

Slept through the night for the first time without coughing!

Hardly coughing up any mucus now. 2 x walks on a warm day and finding inclines to run up.

My evening physiotherapy is hardly producing any mucus now which is a revelation! Before Kaftrio there was no end to the amount of mucus which I had to cough up.

Tuesday 15 Sept – Day 11

Side-effects of itchiness is on and off. Monitoring for other side effects like low blood sugar levels and upset stomach…

Still doing all my other CF and Diabetic meds so nothing changing with that.

Seem to have a bit more energy despite the disrupted sleep.

Not sure if my poor sleep is due to Kaftrio or perpetually working from home and not being as tired as would be on a usual London commute day.

Wednesday 16 Sept – Day 12

Not much mucus to come up during my morning physiotherapy session. This is a complete contrast to my mornings pre-Kaftrio when I would cough for the first 90 mins like a 40 a day smoker! Oh the irony that I’ve never smoked one cigarette!

The midday run was hard but I included running up some inclines in the park as well as the flats!

Thursday 17 Sept – Day 13

Very little cough when I woke in the middle of the night.

I could do 5 more press ups in one go (from 30 to 35) during my morning exercise.

Kaftrio is giving me the ability to challenge my underlying fitness and organically improve it.

It is allowing me to do the exercise to get fitter rather than making me fitter just because I’m taking it. It seems to remove the CF symptoms and complications out of the way.

Incremental improvements in my lung function and fitness seem to be the order of the day.

Friday 18 Sept – Day 14

Feel very jaded because of broken sleep but not from extra coughing.

Kaftrio is a powerful drug which must be taking its toll on my body as I adjust to it.

I can definitely do deeper breaths now which feels almost normal (something that the majority of people take for granted feels like my Everest!)

I hardly cough during the day now.

Saturday 19 Sept – Day 15

Went to the gym for the 1^st time since Covid lockdown to do my weights programme while wearing a mask. Kaftrio feels like it has given me some armour plating, and with that, more confidence.

After the weights session, I ran outside on the cricket outfield. Hardly any mucus to cough up.

Sunday 20 Sept – Day 16

Broken sleep again.

Body aches from 1^st proper weights session in 7 months.

Feel motivated to get back to the gym soon.

Tuesday 22 Sept – Day 18

After a busy day at work, I had the energy to go for an even longer walk and run up more inclines.

I don’t dread running anymore. I’m curious and excited by what I can achieve.

Future vision – it’s possible with Kaftrio that I can run every other day rather than twice a week (which was my usual pattern for the last decade or more)

Wednesday 23 Sept – Day 19

Hardly cough at all in the mornings – I will never tire of this feeling

Thursday 24 Sept – Day 20

More give in my lungs when doing my morning press ups and plank exercise.

No mucus produced during evening physiotherapy session – what a pleasure that is to see.

Friday 25 Sept – Day 21

Slept through the night.

No real coughing even when it was raining outside (normally wet conditions make me cough even more).

Had the flu jab.

My son Felix has had a cold all week following a return to school. I am desperate to avoid catching it.

Saturday 26 Sept – Day 22

Woken up by a sore throat.

Big gym weights session followed by the most amount of oudoor sprints I’ve done in a long time.

Out with friends in the evening for outside pub dining.

Sunday 27 Sept – Day 23

Disaster! A little cold is kicking in following the flu jab and being exposed to Felix’s cold. Not helped by me being ‘Rambo’ with my exercise yesterday but I couldn’t help trying to push my fitness.

Monday – Tuesday 28-29 Sept – Days 24 & 25

Feel very tired. Lungs are already productive again. My nose is streaming.

Kaftrio cannot protect me from getting colds and my CF is still there to flare up when I do get a cold. I feel dejected that this has happened after such a promising start on the new drug.

Wednesday 30 Sept to Sunday 4 Oct

Effects of the cold continue and nose is running more than I can bear.

Only managing one sprint session this last week.

I’m hopeful that Kaftrio will hasten my recovery from this cold and boost my lung function.

Monday 5 Oct

High temperature so went to bed as I was shivering.

No other Covid symptoms so pretty sure this is not the virus.

Katie books me in for a local Covid test in the near-by walk-in centre

Tuesday 6 Oct

Temperature is back to normal but I feel drained from a poor night’s sleep.

Took the test. Katie and Felix to quarantine until we know the result. The cats seem to like being in quarantine!

Wednesday 7 Oct

Later that evening, I receive a text confirming a negative test. All back to normal in the house.

Thursday 8 Oct

Slowly and bit by bit, I see improvements in my health and lungs as Kaftrio aids my recovery.

Oct – Nov (present day)

Am back to feeling how I felt with my lung function, energy and capacity to exercise before the cold, despite navigating some other side effects caused by Kaftrio. This is not a cure but I’ll take it for sure.

It’s been a surreal year with pandemic and isolation but something has changed for the good with my life and health.

I’m not drowning in the ocean anymore. I feel like I’m wading through shallower waters approaching dryland and my survival struggle has been massively eased.

I’m hopeful of a brighter and heathier future with my wife and son. Onwards and upwards. Something changed!

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.

Seeing is believing

When something you really want feels unobtainable, I find it helpful to visualise it in my mind and start believing I already have it. I put this into practice during the pandemic with great results…

I had two significant ‘wants’ over the last four months.

The first desire, caused by the pandemic, forced me to leave my wife Katie and 13 year old son Felix behind in London to shield with my mum in Southampton, due to my chronic lung condition cystic fibrosis* and my wife being a nurse and the threat that posed.

Katie had to play the single parent role while running a hospital department on her own and getting up at dawn to beg supermarkets to let her in to get food for them both. I know tears regularly flowed with her tough plight.

Felix was separated from me which produced some anxiety almost as if he was already grieving. He often had to get himself up and off to school on his own because Katie was at the hospital.

From my perspective, I was blessed to be living with my mum who is amazing in emergency situations and luckily we get on extremely well. But even she and I couldn’t have envisaged having to be shielding together from March to August. But for the majority of this time, it wasn’t at all certain when and how I could ever return home.

As the lockdown eased slightly, I did meet up with Katie and Felix but we had to keep a distance and I wore my mask most of the time. One hug with them was all I wanted and on one meet-up we did finally manage it by putting a rain jacket in-between us and we held each other tight and cried our hearts out. To my dying days, I shall never forget how huge those hugs felt to me.

The second desire was to improve my failing health. A virus (not sure what it was) back in late December had knocked my lungs for six. I had been recovering ever since but I was still struggling and suffering every day.

I found a local school playing field to do my shuttle runs to keep up some fitness but they were excruciating for my lungs.

Hovering over me all this year has been the option of a ‘wonder’ drug called Kaftrio which was not yet available to the CF community in the UK and all the indications were that this drug wouldn’t be made accessible till 2021. I was utterly desperate for this drug to give me a much-needed health boost and to help me come out of shielding but it seemed a long way off just as I needed it the most.

So during my time in Southampton the outlook looked pretty bleak both for my return home and of starting this amazing drug. It would have been all too easy to drift into a pit of worry and depression…

What happened?

I decided not to worry but imagine I already had both these wants in my life.

As well as the importance of physical exercise every day, I have also been practicing mental ‘exercise’ in the form of daily stillness, quiet and meditation in my mum’s back garden.

During this ‘mental work-out’ surrounded by the wonder of nature, I started to imagine being back with my family and hugging them.

I also could see myself taking this Kaftrio drug and I said thanks for the benefits it was bringing me for my lung function, energy levels, exercise ability and positivity.

With each mental projection, I would smile as if it was actually happening as I could see it in my mind’s eye. As I saw it, I could believe it was true.

What was the outcome?

I did this daily practice for at least two months however desperately low I was feeling.

On 8 August, I finally returned home when shielding in the UK paused and some of the pandemic restrictions were lifted. Since then we have had a lovely family holiday on the Isle of Wight. We hug whenever possible.

The UK government made a deal for people with CF to receive Kaftrio and the European medical agency recently granted the license for UK doctors to prescribe it for me and thousands like me. I will be starting this drug in the next two weeks and hopefully reap the benefits. I will keep you posted on a separate blog post.

Felix and I enjoying one of our long hugs as the sun sets in the Isle of Wight

Team Wotton on Colwell Bay beach, Isle of Wight

Never forget – don’t give up hope when things are desperate and out of reach. Have patience as miracles don’t happen instantly. See it. Believe it. Seeing is believing…

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.

Apart

‘Love will tear us apart’ by the Joy Division has certainly been brought to life for me and many others during the Coronavirus pandemic…

This is a tricky situation for me. Due to my chronic lung condition cystic fibrosis (CF)* I’m particularly vulnerable to Covid-19 and I need to be shielded. Add into the mix that my wife, Katie, is a nurse at Epsom hospital, and the risks for me are off the scale.

I’ve been cheating death all my life surviving CF and now I’m desperately trying to avoid Covid-19 which would give me a hell of a rough ride if I was to contract it.

As this crisis kicked off earlier this year, there were some ironies which were not lost on me. Notably around hand and face hygiene, which CF people monitor all their lives. Not so amusing is the dynamic that our consistent coughing in public is greeted with understandable suspicion that we are outside spreading the virus, when in fact we’re desperate to avoid it at all costs!

Torn apart

So with heavy heart, over seven weeks ago I had to leave my wife, 13 year old son Felix and cats in London to live in Southampton with my mum Margaret. Their love to keep me safe, alive and dodge this awful virus tore us apart.

I do endure tough times and have moments of pure sadness, where tears appear out of nowhere, and loneliness which can overwhelm me for certain periods. I except that this is natural and don’t get frustrated with myself. In normal life I rarely cry, but these emotions need to be released.

As much as technology is getting us through this in the form of Zoom and FaceTime to ‘see’ our loved ones, there are some conversations which are not easy when all you really need is a hug.

I miss my family very much and it’s challenging not to see them. Every morning I visualise giving them individual hugs and stroking the cats, which allows me to feel like I’m in my home with them.

The harsh fact for me is that until there’s a vaccine, I doubt I can return home. My positivity bias is strong so I am hopeful that these bright scientists around the world will find a suitable vaccine sooner rather than later – necessity has to be the mother of all invention.

Post it note from my son Felix

Day at a time

In the meantime, I’m taking it day-by-day – using my gift of presence and the power of the mind to ‘mentally exercise’ every day alongside my physical activity.

For me, being close to nature is my anchor for stillness and peace. The abundance of birdsong in my mum’s garden, especially the melodic warbling of black birds, has been so helpful with my practice of deep breathing and meditation.

I’m lucky that my day job can be accomplished at home so that gives me structure Monday to Friday plus my caring mum and I are used to spending time together for my hideous IV treatments, so this is an extension of that.

Pretty much everyone is going to take a hit during this crisis or will have to sacrifice something (even the ultimate sacrifice of losing a loved one) so that keeps me grounded about not seeing my wife and son, despite the overwhelming sorrow I feel.

By coincidence, I keep hearing on the radio the 1980’s ABC song (some would say I only hear 80’s music) called ‘All of my Heart’ which has the poignant closing lyric “You’ll come home soon.”

Love has torn us apart but I’m forever hopeful that it will bring us back together again before too long.

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 resilience 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.

Worth a listen – I was a guest a few years ago on the Adam Cox’s Modern Mindset podcast, which has just been released on all podcast platforms and is a great interview.

* 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.

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.