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.

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