It may seem strange to some people, but I’m genuinely grateful for having cystic fibrosis.

Don’t get me wrong, I don’t wake up in the morning, leap out of bed and proclaim to the world, “What a wonderful morning,my lungs are going to kill me!”

But the most formative and transformative experiences of my life have happened only because of this condition.

CF has taught me the true meaning of friendship

When I was at school, probably only 11 or 12 years-old, and I told a new person I’d met that I had CF, she went away to the library (yes, I’m so old she couldn’t Google it) and researched what it is, what it means and how she could best support me. She’s still one of my closest friends.

Friends like the ones who stood by me at school and through everything I’ve experienced, missed out on and enjoyed since, have shown me what true friendship really means.

CF taught me how not to take life too seriously

It taught me the Smile Through It principle, which I still live by today. Even on our worst days, if you can find one thing to make you smile then it’s been a worthwhile day — and you’d be surprised how easy it can be to find just one thing.

CF has taught me that nothing in life is guaranteed

It showed me that what’s true today may be false tomorrow; what’s working now may not work next week. It’s taught me to enjoy what we have while we have it, and to be grateful to have had it when it’s gone.

CF has shown me that there is more to life

People spend their time getting uppity about everything these days. Everything seems to cause offence, indignation or outrage. People barge to the front of a queue, cram onto a tube or get angry at the people around them, but it’s just not worth it. I’ve learned to be happy to wait for the next train, be five minutes later than planned and not get upset about it.

CF has taught me the meaning and value of love

It’s taught me how to love and support my wife, it’s taught me how to value time with my family and friends, it’s taught me gratitude for their presence in my life and how they help shape my outlook.

CF has connected me to so many wonderful people

I’ve met famous people, become friends with people I’d never have met had it not been for CF or transplant, and enabled me to meet some people who truly inspire me, both with CF and without. I’ve been introduced to new worlds of people, places, things and experiences that I would never have enjoyed were it not for CF or transplant.

CF has taught me compassion for other people’s problems

Before my transplant I remember the effort that used to go into not getting angry when people say “Oh, yeah, I’ve got a bit of a cough, too,” or that they had also been waiting for ages for their knee/hip/elbow operation and wasn’t it just the worst?

Now, I can see that everyone has problems and nothing is big or small unless you make it so. Compassion lets you see things and not judge them, but rather support people when they need it.

How can I possibly look at this list of things and not be grateful?

There are so many people in my life I miss. So many people I’ve been connected to through CF or through transplant and who are no longer with us. And that’s deeply, deeply upsetting.

But they are people I had the chance to know, people I had the chance to learn from, people who helped make me the person I am today because they were a part of my life.

So thank you to Gary, Rich, Emily, Jo, Toria, Katie, Anders, Pete, Gareth, Theo, Jayne, Alice, Jess, Lucy, Jack and so many others for being part of my life. I know we’ll meet again — hopefully not too soon — and we’ll have one almighty party in a place where cross-infection poses no risks.

Cystic fibrosis has made me the man I am today, and you know what? I quite like me, actually.

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This post first appeared on Medium as part of a five-part series for CF Week 2016.

People with cystic fibrosis spend an extraordinary amount of time in hospital, either visiting briefly for a quick once-over in out-patients, or for longer in-patient stays for intensive courses of treatment.

And whatever anyone else says about the NHS, I can confidently say that my medical team are some of my best friends in the world.

There were periods of my life when I spent more time with my CF team than with my friends, when the people I confided in most were my nurses and physios, and when I felt like they were the only people who understood me.

Of course, it goes without saying that without the healthcare they provided, I’d be dead. So that’s also a plus.

When I was 18 I transferred to adult care from my paediatric team in Northampton to the adult unit in Oxford. They call it “transition”, which implies a smooth and calm process, but mine was here one day, there the next — sudden, brutal and very discombobulating.

I knew things would be fine from my first appointment, though: the physio had the same birthday as me (albeit a few years earlier than mine!) and she treated me like an actual person.

She asked how much physio I was doing (correct answer: two to three sessions a day) and when I said, bluntly, “None really,” expecting my head to get chewed off with a lecture about how important it was, she just nodded and made a note. That was it.

When I was going downhill rapidly, I remember sitting in my hospital room with my CF nurse and telling her, “I’m going to have to think about transplant soon, aren’t I?”

She put down my notes, pulled up a chair and we sat and talked about life, death, transplant, treatment options, end-of-life care and a whole load of other things for well over an hour without her once looking at the clock or answering her bleep. She knew what I needed then more than anything was to talk. Three weeks later I was referred for transplant, knowing it was the right move fro me.

“I am part of all that I have met.”

Alfred Lord Tennyson

I’ve grown into the person I am today because of the love, support and overwhelming kindness I’ve been shown by my medical teams since I was a child.

The team at Oxford, two of whom are still there almost 15 years on from when I first met them, have played a massive part in shaping my outlook on life and my health, and have managed it all without ever “telling” me what I should be doing.

My CF nurse once asked me four times in a row how I was one day, knowing each time I was putting a gloss on things because I honestly didn’t know what to say. When I finally relented and just said, “Sh*t,” she was able to help me talk through everything I was worried about.

These people are the true heroes of cystic fibrosis.

Living with CF we have no choice but to fight our battle each day. I don’t see that as brave, it’s just life. But these are people who have chosen to dedicate their lives to helping people like me stay alive.

They’ve seen more people pass through their doors and pass away than I care to imagine, and yet they still smile, they still encourage, they still push us to be the best we can be.

Here’s to the doctors, the nurses, the physios, the dietitians, the social workers, the psychologists and everyone else who helps make the NHS such a special place. There aren’t enough boxes of chocolate in the world to adequately say thank you for what you do, or what you have done for me.

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This post was first published on Medium as part of a five-part series for CF Week 2016.

Earlier this week, Ciara shared this video explaining cystic fibrosis in which she not only covers what CF is, but also the effects it has on people.

From the lungs (which most people know about), to the pancreas and stomach (which some people know about), all the way through to CF-related diabetes, osteoporosis (brittle bones) and more (which most people don’t know about).

She also touched on a really important point that affects most people with CF (in my experience at least):

CF is not just physical

It’s tough growing up knowing you’re likely to die much younger than your friends. It’s tough to be forced into making decisions based on health not desires when all your friends are off for a night out. And it’s tough not knowing if you’re ever going to be able to study or work full-time, or if you’ll always be too ill.

When you look at your friends in the prime of their lives, seemingly free to do and enjoy whatever they choose, whenever they choose, having CF starts to grate a bit. Your friends fly off to the far reaches of the world for the most remarkable gap years while you know that a developing country doesn’t offer the emergency healthcare you might need.

By far the hardest part of a life lived with CF, though, is watching the condition slowly whittle down your circle of friends. I’ve lost more friends that I care to count to the same condition that I know will one day kill me, and that’s a brutal reality to live with.

The challenges only multiply when you’re listed for transplant: you know you’re only on the list because the docs don’t expect you to live much longer, yet you’re so weak and so frequently ill that you can’t do all those bucket-list things you want to do before you do pop your under-used clogs.

Add to that the fact that you know waiting for a pair of lungs means you’re waiting for someone else to die and you’ve got a whole mess of different emotions and expectations to deal with.

Strength is all relative

Ciara put her finger right on the button in her video when she says this is all made harder by how often people tell you how strong you are.

“People are always telling me how inspired they are by my strength.” Ciara Hillyer

I’ve never begrudged inspiration — who am I to tell people what they should and shouldn’t be inspired by ?— but for a lot of people this perception of strength can enhance a greater weakness: a refusal to seek help. As if asking for help negates people’s admiration because you’re not doing it on your own.

I have a secret: that’s bullsh*t.

Brian Shaw is the world’s strongest man. Do you think he does it by sitting on his sofa all day? No, he trains. He worked hard to get to this point he’s working hard to stay there. And he doesn’t do it on his own, either. He has a team of trainers, advisors, supporters who are with him every step of the way.

It’s not weak to seek help, it’s a sign of ultimate self-knowledge and strength. When we can stand up and recognise our biggest challenges, we’re already winning the battle against them.

There is no simple solution

Even after transplant the issues don’t go away. Survivor’s Guilt is common, questioning why I’m still here when so many of my friends aren’t.

The first Christmas after my transplant we were all overwhelmed by joy, but I was also crushed by the devastation that one family was feeling somewhere in the world.

But the last nine years have taught me something vital in my fight against my mental health battles — a lesson I learned from an amazing friend of mine, also a transplant recipient, and no longer with us:

“This is my life and I choose to love it.” Emily Thackray

I’m here, I’m alive, I’m breathing. I’m working, I’m playing, I’m learning. I’m married to an incredible woman and I’m surrounded by incredible family and friends. Why I’m still here doesn’t matter.

Maybe I was chosen, maybe I’m just lucky. Maybe there’s a reason for this, maybe there’s no reason to anything. Who are any of us to judge our places in the world?

My choice is to live my life in the best way I know how and to hope that someone, somewhere is looking down on me and thinking, “I’m glad it was him.”

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This post was first published on Medium as part of a five-part series for CF Week 2016.

Take a moment to imagine your best friend. The person who truly understands you, who you can be totally yourself with. Take a moment to summon up all the memories you share together, good and bad, highs and lows, peaks and troughs.

Take a moment to imagine you’ve been diagnosed with a health problem. Doesn’t have to be life-threatening, don’t bum yourself out. What would you do? Go online, probably. Google around. Chances are you’ll find a support group somewhere nearby and turn up nervously next Wednesday to find some bad coffee, cheap donuts and common ground with other people going through the same thing as you.

Take a moment to imagine your favourite hobby or pastime. Maybe it’s singing, dancing, performing with other people. Maybe it’s building and racing cars, karts or model planes. Maybe it’s knitting, crafting or baking, especially with friends while you create your new masterpieces. Whatever it is, chances are you like spending time doing it with other people who like spending time doing it.

What if you couldn’t hang out with your best friend? What if a support group was the worst possible thing for you to go to? What if like-minded people were actually dangerous to your health?

That’s the reality for people with cystic fibrosis (CF).

Two people with cystic fibrosis can never meet

Back when I was a kid, I went on two amazing holidays with other people with CF. One was a CF camp in the countryside just outside London, the other a once-in-a-lifetime holiday trip courtesy of a charity called Dreamflight. Both were places where I was encouraged to mix with and seek support from other people with CF.

In the mid-nineties, doctors began exploring a hypothesis that harmful bugs — bugs that may have no effect on “normal” people — could be passed quickly and easily between people with CF, with frequently life-threatening consequences.

It took a while for anyone of my generation to accept something that had been fine last week was suddenly off the table, but scientific evidence began to back up the claims and it’s now clear that cross-infection is one of the biggest risks to people with CF today.

Of course, not all people with CF are alike. There are some people I just don’t like, and a shared life-shortening medical condition won’t do anything to change that. But I’ve gained a huge amount from my friends with CF and it hurts to only be able to conduct those relationships remotely.

Sure, things are far better now than they were in the nineties when I was really struggling. Text messaging (at first) and social media (later) have enabled much quicker and easier communication with friends, and much easier ways of asking questions when you’re not sure if what you’re feeling is “normal” or whether to go and see your doctor.

That doesn’t take away the fact that when you lose a friend to CF, you can’t gather with your surviving friends in a pub to say goodbye. You can’t huddle together at the funeral for fear of putting each other in the same place as the person you’ve come to honour. You can’t give or get a hug when you need it most from the people who understand you most.

Last year when we were thinking up new ideas and propositions for the Cystic Fibrosis Trust, we came up with the concept of “Fighting for a Life Unlimited”. Ultimately, we want to find the cure that means no one with CF ever has to watch their friends die and that parents of people with CF stop outliving their children. We know that along the road to that day there will be many “small wins” that will move us closer to that ultimate goal, each one lifting a limit that CF places on people’s lives.

The limit that means the most to me, that I can’t wait to see, is the day people with CF can meet anyone else with CF without having to take extreme cross-infection precautions. Because not being able to hang out with people really, really sucks.

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This post was first published on Medium as part of a five-part series for CF Week 2016

This week is CF Week 2016 — the UK-based awareness week that coincides with the global CF Awareness month.

I intended to re-start the Smile Through It videos again this week, filming and uploading a daily vlog to cover five things you may not know about cystic fibrosis (CF). Yesterday, I realised just how unrealistic that was, given that recently I’ve been battling through some real energy crashes in the evenings, which is when I would need to focus my creative energies on producing the vlog.

This leads me to thing number one that you might not know about cystic fibrosis:

Transplant ≠ Cure

Almost nine years ago I had a double-lung transplant. I was at best a few months away from death, most likely a few weeks, and everyone was expecting the worst while silently hoping and praying for the best.

My life has changed completely from the life spent living moment to moment, day to day, hoping I had enough energy to do more than lie in bed all day chained to an oxygen cylinder, but rarely having my wish come true.

Now I live a “normal” life. I’m married, I’ve just bought a house, I have an amazing job as a senior leader in the organisation that played a huge part in my being alive today, and I’m able to plan for a future many of us never thought I’d see.

But it doesn’t mean all my troubles and challenges have gone away. And it certainly doesn’t mean I’m cured.

I still take bucketfuls of tablets everyday (in excess of 60 each day, which is almost 2,000 per month), I still have to take inhaled nebulisers to keep my new lungs free of infection and I still have a whole host of CF-related complications. I’m diabetic (thanks to the steroids I take as part of my anti-rejection therapy), my bones are more brittle than they should be and I still can’t digest food properly and so have to take enzymes with every meal.

The biggest struggle, though, is having to manage my energy levels. I always knew transplant wasn’t a cure, but I did think it would make me “normal” — that I’d be able to do everything everyone else can do.

Over the last nine years (very, very slowly), I’ve learned two very important lessons.

There’s no such things as normal

I perceived “normal” as being able to do whatever I wanted to do.

My ideal day would start at 5am (I love early mornings) when I could tackle personal projects, read, meditate, get a kick-start on the day, and would end around midnight after a nicely chilled out evening of quality time with my wife. I’d only need a few hours of sleep to rest and recharge, like all the “great” people of the world.

What I discovered was that this isn’t “normal”. And, in fact, there is no “normal”.

Not everyone can operate on 4 hours sleep a night (especially me) and not everyone can do the things I do either. “Normal” is whatever you want it to be, but to embrace it you also have to embrace your limits.

There may not be as many hours in my day as I’d like (needing 8 of them to sleep is such a drag), but I can still fit the things I want to do into most of them. It’s just about prioritising.

The Superman complex gets you nowhere

The second thing I learned is how much damage you can do yourself by thinking it’s possible to operate like anyone else.

Physically I made myself exhausted trying to get up early, go to sleep late and do more in a day. I ended up doing less because I was so tired my brain didn’t work when I most needed it to.

Mentally it was even worse, because until you realise that you’re suffering from what my doctor calls “Superman syndrome” all you can see is that you’re not able to do the things you want to do in the way you want to do them. You’re fixated on an ideal that’s impossible to reach.

My transplant hasn’t cured me of cystic fibrosis, but it has allowed me to do more than I could ever imagine. And it’s allowed me to learn more about myself than I ever thought possible.

Spare a thought today for all those people out there living their life moment-to-moment not because they’ve chosen it as their way of life, but because they have no choice.

Spare a thought for those people waiting at home for that phone to ring to tell them they might have a second chance for life.

Spare a thought for those people whose second chance will never come.

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This post was first published on Medium as part of a five-part series for CF Week 2016.

I had “one of those days” yesterday. The kind that starts off not very well, gets progressively worse and ends without much of a glimmer of light anywhere.

Two things occurred to me as I took the long, slow drive home from London. The first was how much many people would kill for a bad day like mine.

Back before my transplant, I was fighting for every breath, living one day to the next in the hope that a) I wouldn’t die and b) today might might be a tiny bit better than the day before.

Yesterday I’d spent the night in a supremely uncomfortable Holiday Inn, hardly slept, woken up with a neck ache, then spent two-and-a-half hours driving about 13 miles into central London, eventually turning up so late for a meeting they’d already finished. And the day went downhill from there.

I realised on my long, slow drive home in the evening that before my transplant I wouldn’t even have been able to spend Wednesday night out at a recording of a TV show, let alone have enough energy left over to do a full day of work.

I’m incredibly blessed to be in the position I’m in, to have the support I have and to have been given the gift of life. I know plenty of people who would kill for a bad day like I had yesterday, versus a bad day that means they end up in hospital genuinely worried about what comes next.

The other thing I realised as a cruised up the M1, mildly faster than a snail at full pelt, was that I had a whole new day starting tomorrow. I hated myself for thinking in such horrendous clichés, but tomorrow would be a fresh start, a new day, a fresh shot at making it as awesome as Wednesday had been.

It’s important to remember these things. We all too easily forget the things we have going for us, and the opportunities we’re presented with every single day.

Don’t forget. Take another shot at awesome.

Monday is a good day to start, right? Or the first of the month? Or perhaps a significant day — a birthday, an anniversary, the first of January.

The truth is, if you want to get something done, if you want to take that first step of many along your road to succeeding in whatever you’re trying to do, start today. Don’t wait.

Too many times we promise ourselves we’ll get started once the time is right, but the time will never be ‘right’. There will always be an excuse not to wake up earlier, not to eat healthier, not to go to the gym today (“But I will tomorrow, I promise!”), not to create something.

Start today and banish those excuses.

This is a start.

In the words of Seth Godin, “This might not work”, but I’m going to be trying to create something (most commonly a piece of writing here on Medium) every day, at least for the next month. I have history with this sort of thing and I’ve not been terribly successful at it, but if I fail, who cares? What if I succeed this time?

I defy you to read this post and not be inspired to want to create something everyday for an audience of you. The idea that I can do this for a year seems crazy at this point, but unless I start, unless I hit “Publish” on this post today, and another one tomorrow, and one the next day, I’ll never know what may come of it.

What are you going to start today?