Hi, my name is Aileen Henderson. I’m 23 years old and I was diagnosed with CF when I was 3 years old. Just before my diagnosis, I moved from Scotland to Galway and it is Galway University Hospital that I have attended all my life.
For people with and without CF, a new year brings about all the new intentions to finally do all you can to improve your overall health. I was one of those people and for me it was fitness that I wanted to improve. I had all the ideas in the world except they remained just good intentions for several years. I do consider myself a ‘good patient’ and I take all my nebulisers and treatments etc. but exercise was something that I struggled to stick to.
As a child I was very active. I attended dance and swimming classes as well as camogie. I never had any issues keeping up with my friends and would be out in my estate all day playing whatever games were made up on the big fields. I guess when you’re young you don’t consider all this exercise, it’s just fun. I wasn’t even aware how important exercise was for people with CF at that age but once I got older, I did realize the importance and that I had to do it!
Therefore, it became a chore. This all started once I became a teenager. Despite all my best intentions I found it impossible to stick to anything. I chose badminton as my sport in school instead of hockey or basketball because I felt it involved the least movement. I tried dancing again, went to Zumba with my friend and also yoga- the only exercise this involved for my lungs was trying to hold in laughter at the back of the class!
I continued to attempt various forms of exercise for many years but never got a proper routine going.
Two years ago, I noticed my lung function began to slip. I also had a few haemoptysis episodes. For all my life it has stayed relatively stable between
50-60% with 50 being my current baseline figure. It began to drop below 50 for the first time and although it wasn’t a drastic decline, for me it was worrying, and I began to fear any upcoming hospital appointments. I always had a sense of guilt going in because I knew if the appointment didn’t go well, I’d get upset but I also wasn’t doing anything to help myself and I hated that. So, I attempted to get into a routine again. Firstly, it was just simple walking. After a while I began to get bored and I thought of just stopping but instead of that I joined a gym and started cycling. I think this is an important message, if something doesn’t suit you, don’t give up and keep trying until you find something that does. The same thing happened with cycling and I got bored, so I introduced the rowing machine and the cross trainer. I would do set amount of times on each, so I wasn’t stuck doing the same thing for long. I also began lifting weights. I must mention that I had to go very easy at the start. I’m prone to haemoptysis and at the start this would happen very easily. I was never able to run for more than 30 seconds without it starting up and any vigorous exercise would result in it happening. Because of this my exercise journey has been a slow and steady one and it took me a long time to build up to what I currently do. Slow and steady wins the race!
The CF exercise grant helped me so much and it can be used for all thing’s fitness related like home equipment or classes you attend - I highly recommend it! I’ve paid for 12 months of the gym so there’s no escape now! Something else that was of extreme help for me was signing up for the ‘Ben Mudge CF fitness plan’. He is a fitness trainer but also has CF. It gave me the motivation and guidance I needed my whole life and looking back I wish I had the access to his plan sooner. I’m so grateful to have it now. It’s great to have guided fitness videos and an easy to follow app so that I can tick off what days I went to the gym and also track my progress. He also provides recipes so that you can improve your cooking skills and learn more about nutrition and CF. He’s always available to contact and answer any questions you have- the whole plan really has been a life saver!
Now I attend the gym 3-4 times a week and I have cardio days and weight days. The weights have also helped my weight as muscle is heavier than fat! This variety in days works well because it means you’re not going in doing the exact same thing every day. I spend 1-2 hours in there each time and I have become so much healthier and stronger. I can now run without setting off haemoptysis and my lung function is stable and back to baseline. I have learnt that lung function numbers aren’t everything and although my figures haven’t changed much, I have seen a major improvement in my overall health, and everyday tasks aren’t half as challenging as they used to be. I honestly never thought I’d see the day!
Not only has it helped me physically, it has helped mentally. I often dread the thought of going to the gym, but I don’t give in and I go anyway, I never regret it afterwards. It makes you feel so good. Of course, there’s going to be days when you really don’t feel like going but that’s ok too - rest days are just as important! I now know that exercise doesn’t have to be a chore, you just have to find what suits. If I get bored of doing something for too long, I just switch it up! It doesn’t even have to be much as any little amount can go a long way. I no longer worry as much about clinic appointments because I know if I don’t get the results, I had hoped for, I have still tried everything possible and have done my best and that’s all you can do. If I can do it anyone can!
I would also like to mention the ‘Salty Soldiers’. This is a group myself and my friends with CF set up with the aim to reach out and motivate other people with CF. We got to know each other through social media and decided to set up an Instagram page. On this we share our stories, experiences and keep people up to date on many aspects to do with CF. It is a great platform, especially for teenagers as they can see that we all find things difficult at times, but we do our treatments and live normal lives. The aim of the Instagram page is to motivate and show a sense of normality. Through the group I have made many new best friends, we chat every day and it’s so nice knowing you have people who are always there and understand each other so well.