Sports therapist and long distance runner Evan Scully is an expert at balancing being a high performance athlete with the obstacles that come with having CF. He’s the European marathon record holder for the fastest person with CF and, in his professional capacity, has worked with hundreds of Olympians. In this interview we talk about how people with CF, of varying levels of severity and both young and old, can work towards improving their health through fitness and diet. We also discuss traditional Chinese medicine and more general CF topics.
Martin) You’ve been running competitively from a very young age. Were sports and being active something instilled in you by your parents? What advice would you give to parents of children with CF regarding helping their kids take part in sports?
Evan) My parents made sports fun. Everything that surrounded my CF was fun. Therapy was made fun, and I looked forward to getting a therapy hug after. Even to this day, I find someone clapping me on my chest therapeutic.
Sports and being competitive was something I was born with. My parent knew this and if I was asked to put on their electric blanket, I was timed to see how fast I could do it. Somehow I always ran faster then the time before!
I never looked at running as a form of therapy for my CF. I did it to be the best. It just happened to be great for my CF. Even if I wanted to take a day off school as a “sick day”, I knew that meant not being able to train that day so I never took a voluntary “sick day”.
M) As a professional sports therapist and a person with CF you’re in a unique position to understand how our activity needs differ from people without CF. For those of us who are adults wanting to become more active, is there any CF specific advice you have for starting out? Such as whether we should consider more rest days to allow our bodies to recover, whether we shouldn’t push ourselves as much as others, etc?
E) Training for specific cases is paramount. I couldn’t tell someone else with CF to do what I do because our goals aren’t the same – we aren’t at the same fitness level, are we after coming off antibiotics, is their reason for exercise to grow muscle or to run longer?
However, I do feel that although the term “we are all different” exists, I think its used a bit too much. As humans, we find it very easy to use excuses and reasons to not do something.
I’ve been running for 22 years, and exercised most of my life. I’m in a position that people without CF aren’t in. So if I was to advise someone with CF to do more exercise, I would suggest getting some sort of coach or use the Physio in the hospital to do up a programme. You need to be accountable to someone. Write down a goal that you want to achieve. It could be doing a Park Run, a 10km or even a marathon. Whatever your goal is, you have to write it down.
Being healthy is holistic. I do think that we need more recovery then someone else without CF. I need around 9-10 hours sleep a day. You need to look at what you eat in a day. That doesnt mean Haribo and Lucozade. Don’t use CFRD (cystic fibrosis related diabetes) as an excuse that you can eat and drink those. Take your health into your own hands and don’t let yourself get to the point of a hypo. Of course, if you do get a hypo then you do need Lucozade or some form of sugar, but please don’t use CFRD as an excuse to be able to eat bad. You wont be doing yourself any favours in the long run.
M) Are there any particular exercise activities that you do that you find most effective at loosening and bringing up mucus?
E) 100% running. Cycling helps but running is the best form of exercise to bring up mucus. I use a ketchup bottle as an analogy. You can turn it upside down and wait a very long time for the ketchup to come out, or else give the bottom of the bottle a good smack to help it come out. The smack is the vibrations of you running on the ground. Each step causes vibrations that can dislodge mucus.
M) When you feel the first signs of becoming ill, such as tiredness or producing more sputum, do you find that it helps you to step up/continue exercising or do you tend to slow down or even stop all together until you’re better?
E) I’ve become very good at listening to my own body. Sometimes I’m tired because I’m training for a marathon. However, if I start to become more productive, I act on it. I drop in a sputum and stop the guessing. If there is no infection then I don’t take any antibiotics. Because I live in Ireland, sometimes the weather can create more mucus. So I take that into account as well.
I reduce the amount I run to let my body catch back up. But I rarely stop as I still need to get mucus out. Even if that’s a 5min walk or jog then so be it. Its better then nothing.
M) Let’s talk diet. What type of foods do you eat before and after a strenuous event or training session to maximise your performance and gains?
E) This is an area that really annoys me. There is a CF booklet for diet. It tells us to eat margarine, put jam and sugar in wherever possible and one dietician told said to me “if you have a choice between eating an apple or a Mars Bar, then eat the Mars Bar”. The next page in the booklet it tells us about CFRD. How does that make any sense at all.
I used to eat as a typical CF person. I would eat a full family sized Swiss Roll for a snack. Drank copious amounts of Lucozade. I used the fact that I have CF and I ran a lot as an excuse to consume that. I think I had an addiction to Lucozade at one point. 3-4 bottles a day.
I’ve drastically changed that ideology. I think about how much nutrition is in each dish and aim for copious amounts of vitamins and minerals. I don’t count macros or calories unless I do a long run which is anywhere up to 24 miles. I burn about 2500-2700 calories on that run alone. So I use MyFitnessPal app to see if I’ve recouped the calories lost.
This sounds very trendy but I am a weekday vegetarian since about 2015. I think I’ve made that term up. It’s not so much because I want to save the planet (although its a good side benefit). I eat like this to become more healthy. Don’t get me wrong, I love a big juicy steak on a Saturday. It’s about a balance and not just consuming it for the sake of it.
I did go vegan for about 6 months but it was a disaster. I only went vegan because I was in America for 3 of those months and the meat and dairy industry had a lot of undesirable additives that I didn’t want to consume. Puss in the milk and the cows are milked during infection and we end up drinking it.
For the next 3 months, I was in France. I’m stubborn so I kept up the vegan way of life. I actually felt hungover for most of those months. So I obviously stopped that.
I don’t do things without knowing if its good for me. So I get regular blood tests to see how they are doing. Surprisingly, my levels are perfect even though I don’t take vitamins. I take minerals like magnesium, zinc, copper and iron.
M) More generally, what are the types of food you try to avoid and types of food you try to eat? How do you balance the age old CF dilemma of getting lots of calories but also trying to avoid eating rubbish?
E) I think I answered part of this in the last question.
I eat as much as I can during the day, and like I said, I use MyFitnessPal app to track my nutrition on the days of my long runs.
I don’t eat anything bad like crisps (‘chips’ in America), or sweets unless its a treat. I absolutely love cereal but I try not to eat the big sugar ones. I love Corn Flakes and I use full fat milk. You’d be surprised how much you can get from that alone. I eat bagels with full fat cream cheese after my long runs. My lunch is like a second dinner.
Sometimes I’m not in the humour to eat so I end up making a shake. I use bananas, maple syrup (its high in magnesium), oats and milk with a bit of cinnamon. Its an easy way to get calories in.
Its hard to get an extra 2000+ calories a day and sometimes I have to force myself to eat. I love food so its not often that I have to force myself to do so.
M) Do you take any supplements or extra vitamins? If so, which ones and how do they help?
E) I don’t take extra vitamins but I do take extra minerals. Zinc, selenium, iron, magnesium and copper.
M) Alongside your Sports Therapy qualification you’ve studied traditional Chinese medicine and acupuncture. Has traditional Chinese medicine helped with your CF symptoms and, if so, how?
E) The reason I started to study Traditional Chinese Medicine was because it cleared my ongoing sinus infection/blockage. I had 75% blockage on one side and 95% on the other. I went for acupuncture for the sinus problems, sweating for no reason, insomnia and vertigo. 6 sessions later and I was clear. It was weird. So i decided to study it. I also find it great for my stomach problems and digestion.
M) Catching colds and viruses can be annoying for us at the best of times, let alone when you have a competitive event coming up. Are there any extra precautions you take to avoid catching them?
E) I nearly always take precautions regardless of if I have a race coming up. For instance, if my fiance (Yasmina) is sick, we don’t really see one another. We sleep in separate rooms. I wore a mask the other week when Yas was sick. She was off work and I was bringing her food and liquids in bed. So I would wear the mask when going into her room. If someone in my family is sick, I don’t see them. My clients know my story as well, so they wont come for treatment if they have a cold. That’s one benefit of people knowing about my CF.
Because I try keep myself as healthy as possible, my immune system is good enough to fight off colds and what not. Mucus is the perfect breathing ground for bacteria. If you let mucus lay in your lungs then bacteria and infection can thrive. So keep the lungs clear and you are already on the front foot.
M) Finally, do you have any other advice for people with CF looking to improve their fitness?
E) Don’t look at the level of exercise I do and think you have to do that in the coming weeks. You can look at it and know its possible to run marathons.
Its hard for me to give general advice here because someone might be on IVs all the time. I wouldn’t tell them to go out on a run. That’s not healthy. It’s ludicrous. However, if you do more then you did last week then you are going in the right direction. If you took the stairs rather then the lift (or elevator in America). Holding that plank for an extra 10 seconds or if you run an extra mile on your run. It’s about sustainability and consistency. If you have one great week and 4 bad weeks, then that’s not consistent.
I just want people to know that anyone can do what I do. It takes a huge amount of dedication and will, but if you want it then you can achieve it.
A huge thank you to Evan for sharing his expertise with us. There are lots of ways to follow and be in touch with him;
His professional sports therapist website and personal site, his brilliant YouTube page which is a mixture of fitness, CF and general life content, his Instagram page, his sports therapist Facebook page,his personal Facebook page and his Twitter profile.
*ALWAYS ENSURE YOU SPEAK WITH YOUR MEDICAL TEAM BEFORE MAKING ANY HEALTH RELATED CHANGES TO YOUR LIFESTYLE*
CyFi Life - Advice on Leading Healthy and Fulfilling Lives from People with CF 