The endurance athlete with Cystic Fibrosis who's inspiring others during lockdown

By Abby Coleman | 8 Minute Read

Sophie Grace Holmes was born with Cystic Fibrosis - an inherited, life-threatening lung disease that comes with an average life expectancy of 37 years - but that hasn't stopped the 28-year-old completing a 100km ultramarathon, cycling the length of Great Britain, climbing to the summit of Mount Kilimanjaro, or paddleboarding 80 miles from the Bahamas to Florida.

We spoke to the ultra-endurance athlete ahead of her next epic challenge to find out how she's been defying expectations and inspiring others, even during lockdown...

 

Hi Sophie, thanks for taking the time to speak to us today. When did you first know you had Cystic Fibrosis (CF) and how has that shaped your outlook on life?

Hi guys, well, after being born 10 weeks premature, my parents took me home and I became really poorly, so obviously my Mum and Dad were like, "this isn't normal".

The Paediatric Consultant had assumed it was because I was 'prem', but thankfully there was a nurse there who had a daughter with CF and she thought there was something more serious, so she licked my skin (because one of the symptoms of CF is salty skin!).

That nurse basically saved my life as I then got tested and was diagnosed with CF. 

Growing up I did every single sport under the sun and obviously I had my dips in health - my lung capacity was at 50% at one stage - but my Mum and Dad were so great because they allowed me to grow up like a normal child. 

I was allowed to do everything my sisters did, play in the mud, run around everywhere and I think that's why I'm so strong mentally and why my immune system is strong. 

I had a consultant who told me when I was 19 that I had two years to live, but I'll be 29 in July of this year. Since then, the consultant has told me, "I'm going to keep telling everyone about you and the fact that you've had to adapt your life, but you're still doing all this training and pushing yourself".

 

Sophie Grace Holmes swimmingSource: Sophie Grace Holmes Instagram ©

 

Have you still managed to stay relatively active during the current lockdown period in the UK, where people with CF are being advised to 'shield and protect' by staying at home? 

I think this is now going into week number seven for me in the house and I'm still training, as well as doing daily online group workouts through my Instagram and YouTube channels.

I do miss my swim training and lifting heavy weights that make a difference to my strength. But I've just adapted to be honest because I think you've got to learn how to adapt.

My whole life has involved a bit of social distancing and isolation because of the nature of Cystic Fibrosis, and you have to constantly be changing the goalposts. 

The one big change I guess would be that with our daily medication, which we get from an outsource company rather than a normal pharmacy because the medication is way too expensive.

So what they've done for me is made sure that I've got enough medication at home for three months just in case their services are delayed or anything like that.

 

 

I know some hospitals are able to send out healthcare professionals, but they've made it very clear in emails that if you have to be admitted, you won't be admitted into a CF ward because they're now for COVID-19 patients, and there's a high chance that you won't see your regular consultant because obviously they're lung specialists and they're needed elsewhere.

Despite all of that, I still see this as a really interesting, positive time because I think you learn a lot about yourself, what you can do and the way you want to progress in life.

When else in life are we ever going to get this opportunity to slow down? I was saying to a friend on the phone last night that I feel like I've achieved more in the last seven weeks of isolation than before, mainly because I now have the time to work on the things I've always wanted to do. So I'm just using it as an opportunity.

 

With that in mind, I saw you were planning to race IRONMAN Austria this year but you're still planning to race it in 2021 instead. To fill the void in the short term, I understand you've come up with a creative IRONMAN race at home instead...

Yeah, I had planned to do IRONMAN Austria and that's been cancelled, so I will be doing the bike-run distance from my own home instead by riding the indoor trainer and running 842 laps of my garden! 

It will be my first IRONMAN race and I figure it'll just be my mindset that gets me through it because it's going to be a long day. I've done 140km on the indoor trainer before, so 180 kilometres isn't too far off. 

I'll be doing the marathon in our shared garden, which is half a kilometre, so I've told all of the flats by me that I'll be running for about four-and-a-half hours just so we can maintain social distancing. Many of them have said they're going to cheer me on from their flats, while members of the public have said they're going to wave as they go by on their daily exercise.

The main reason for the challenge is that I'm going to fundraise for CF Trust and the NHS. It's also a mental challenge because I figure if I can complete this from my mundane lounge then I can literally do anything. 

 

Sophie Grace Holmes running
Source: Sophie Grace Holmes Instagram ©

 

Fantastic! And so how do you approach nutrition and hydration for a challenge like this? Is there much advice for people with CF when it comes to fuelling for exercise? 

Well, it's really an interesting thing because in the hospitals they just tell you to eat anything that's high calorie. That could mean anything. You could have 10 meals a day if you wish! 

The worst advice out there is for people with CF to just eat high calorie, high sugar. If you're eating high sugary foods just to gain weight, then your performance is never going to be backed up by what you eat.

What I've found is that I've gone through different phases of finding out what I need to enhance my own performance.

Nowadays, I feel like I know if I'm lacking hydration or if I need something because I can recognise that I'm a bit fatigued, but I'm not sure the guidance is really there in the hospitals.

If you have CF and you're taking up exercise, you need to recognise the signs that you need to hydrate, so things like sweating more or having salt crystals on your skin.

People with CF typically lose more salt in their sweat, which is why it's important to replace some of what you lose by having sodium in your drinks, which in turn is why I've been using PH for my longer events. 

I'm actually taking a course in nutrition as I'm hoping that I can help other people realise that you might be struggling because it's hot, you're sweating and you haven't fuelled yourself with the right nutrition. 

I think the biggest thing I try and encourage people to do is learn their own bodies as quickly as possible before using that data and talking about it properly with a professional.

 

Sophie Grace Holmes cyclingSource: Sophie Grace Holmes Instagram ©

 

Sounds like a very sensible approach and it's great to see how you're able to help people in the CF community and beyond. With everything that's gone on in the world of late, what would be your one big takeaway that we could learn from?

If I hadn't had CF and hadn't had everything that has happened, I would never be here now and I'd never have embarked on the adventures and challenges that I'm doing.

One of my favourites quotes is "the excuses you make today will be the regrets you have at the end of your life", which is why whenever I sit and contemplate not doing something because I'm feeling lazy, I then try to remember that I'll never regret going for that run or whatever it might be.

There are opportunities to be found no matter the struggle or the situation you're in. You take away the excuse, you find out what you want and you make it happen.

I've found that during my life in general, if you do what's hard, life is easier. If you do what's easy, life becomes harder.

So if you apply that to the current lockdown situation, if you sit down and worry about things and listen to the news all the time and have a more negative outlook, it's going to be really hard.

Whereas if you take it and be like, do you know what, this is the situation and this is what I can do with the time I now have in my house. 

 

Thanks Sophie - good luck for your lockdown IM and for IM Austria in 2021!

If you would like to donate to Sophie's fundraising challenge for the CF Trust and NHS Charities, please visit her IRONMAN at Home fundraising page

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