This is the first in a series of articles introducing our 'Activity Unlimited Ambassadors': people living with cystic fibrosis who have made the decision to use activity as their means to take control and live a life unlimited by the condition.
It is fair to say that fitness has become very important to Joe, a 21-year-old barber from Southend. Having been weight training for three years now, he is aiming to compete in a United Kingdom Bodybuilding and Fitness Federation (UKBFF) event this summer – and we will be following his journey to get there.
"I used to be smaller than my mates, but now I’m bigger than them!"
Although now fairly tall, Joe was always smaller in build than his peers growing up, and he wasn’t happy about it. He started going to the gym aged 18, encouraged by a friend of the family who was into weight training and suggested that it might be a good way for him to gain body mass in a healthy way. Joe says that he got little support from his CF clinic at the time – most of the information available related to cardio work rather than using weights to improve CF health.
“The problem I have with pure cardio workouts is that they make me lose weight, not put it on like I need to. If I don’t exercise I tend to lose weight due to having CF, whereas weight training and the diet that goes with it help me to maintain a healthy weight and feel good.”
At the time of writing, Joe was getting over a lung infection (that he called 'a bit of a cough'), and was using IVs at home: “I shouldn’t really train too much at the moment so I’m being careful; the CF centre want me to not push myself so hard but they know what I’m like”. He blames his customers at the barbers for him picking up the most recent bug: “The first thing people seem to do when they are off sick with a cold is come and get their hair cut!"
Growing up, Joe’s mum followed all the advice given by his care team about nutrition as he always had trouble maintaining a healthy weight: “She practically poured a tin of custard down my throat every morning before school!” Joe is one of several people we have talked to who thinks that the dietary advice given to people with CF needs to be updated and improved. Diagnosed with CF related diabetes at 16, he speculates that a childhood eating a lot of sugary food may have been a factor, although he agrees that more research to understand this is needed.
Joe trains with weights five or six times a week, usually after work. Until recently he was commuting from Southend to Covent Garden, but is now self-employed and based locally, which has made things easier: “I used to leave home at 6am, get back to Southend after 8pm, train for an hour, then drive home, eat, do my CF stuff and then it was time for bed.” Financially, the switch to self-employment has worked out a bit better too, due to the cost of train fares between Southend and London.
For the first six months or so after he started weight training Joe didn’t follow any kind of plan, he just got to know what he needed to from friends. He found that gym trainers lacked an understanding of CF and were giving him advice he felt was wrong, or were just asking too many questions, which became a bit annoying. At his current gym, not many people know he has CF, but then it isn’t something that he thinks about discussing in that environment.
"I really think it’s important that people with CF get the support they need when they start gym training, and having some trainers who know about it would be a big step in the right direction."
Eventually Joe self-educated and got to know people with better knowledge of weight training and through this started to improve and gain weight.
Joe trains using a split body-parts plan. On Mondays he trains chest and triceps, Tuesdays lower back, Wednesday upper back (his least favourite is lat pull downs), Thursday legs, Friday shoulders and Saturday arms. This means he has a complete rest from training on Sundays, although it is still a working day for a barber! The split routine means that the muscles not being used have a chance to recover, and it also means that sessions can be done in a reasonable amount of time.
Something Joe likes to do is to start with a light weight to warm up, then go gradually heavier doing fewer reps per set until he reaches his maximum. Then, after a bit of a rest, he does the same in reverse – this is called 'pyramid training'.
Joe rarely does the same session twice, and likes to mix things up to keep them interesting, which is also good for muscle development. He is very lucky that his gym, Fitness 4 Less, is very well equipped and affordable (£17.99 a month).
He says that weight training can only get you some of the way:
“Eating clean will give your body the best chance of putting weight on in the right way and give you muscular definition.”
Preparing for the bodybuilding competition will take Joe 12 weeks, and food intake is a big factor. Joe’s typical food menu consists of:
- Breakfast shake including protein powder, eggs, avocado, oats and milk.
- Lunch includes sources of carbohydrate and protein, so that he has plenty of energy for the workout in the early evening.
- Dinner is high in protein and doesn’t include carbs, so usually steak, salmon or chicken with vegetables or salad.
To save time and money, Joe bulk-buys meat and fish and prepares meals in advance so that they can be reheated when it is convenient. High food bills come with CF and with bodybuilding “meat is the most expensive thing”, however through good planning and plenty of freezer space this can be managed.
Joe uses Reflex protein powder at present to supplement his food intake; he tried lots of brands but found that many cause him gut problems. Reflex products include enzymes to help bodybuilders metabolise nutrients more efficiently, and this seems to help Joe too. He agrees that it is important to understand what you are putting into your body, and that it is worth checking the small print and asking for advice from a professional if in doubt. Joe feels that more could be done and has seen that proteins recommended in clinic are standard weight gaining ones, not tailored to be as good as possible for people with cystic fibrosis.
When asked about other - perhaps under-the-counter - supplements that some bodybuilders use, Joe said that he isn’t interested, despite them being suggested by others. The competitions he wants to take part in are all drug-tested, and he is considering doing some fitness modelling in the future, which requires a natural look. “You can get some supplements like testosterone boosters that are not detectable but you don’t really know what is in them, and I would rather get to where I want without cheating.” He does have a minor concern that some of his CF medication might be picked up in a drugs test, so he will decide whether or not to declare his condition when he enters the competition.
Most people at his gym have no idea he has cystic fibrosis, although he decided to tell some on the day the photographs were taken, as they were curious as to why the shots were being taken. “I don’t talk about CF much; I just get on with my life”.
As for the future, Joe is keen to work with others with CF if at all possible to help them get fitter, acknowledging that cross-infection is a barrier. Joe is of an age when he can remember having a childhood best-friend who also had CF, and that sadly since there has been more awareness of the risk of infection, they are no longer in contact. Joe is also keen to learn from others with CF who are weight training, share knowledge and discuss issues that are unique to living with the disease.
Written by Paul Rymer, following interviews with Joe Tonge.
Interview with Joe at Cyfilife.com