Wednesday, March 28, 2012

CF And Exercise

Iv have been noticing A LOT more people with CF out running and exercising.
Finally. I always found it funny, that Doctors always kept saying that "running isn't enough. You have to do physio". Well I don't do physio but I run a heck load. When I was younger, we did do physio and maybe 6 times a day. It's was a lot more of getting tickled and clapping on the chest area. Cupping is the correct term. But I can't remember the last time I got that done. I don't find the flutter any use, and the pep mask is ok. But you can't beat running. It causes a vibration, and also works the repiratory muscles at the same time. It's simple when you think about it.
But going to the Doctors, and hospitals, I was never once told that "you must be doing something right". I think I must be doing everything right. As in not going to hospital or been on any IV treatments. But still years have gone past without them thinking, "Evan seems to run a lot. He's never in hospital and his lung function never drops. He runs that much and keeps the same weight on". Well for some reason, the word has spread. It wasn't u til I got an email asking "are you the CF runner. Your picture is above the treadmill in the hospital". I found this weird, seen as Doctors never really said anything. Someone must have read the article and seen the picture, and decided to post it up in the physio room. It seems like a bit of inspiration for them. People thought that running sub 10 seconds for the 100m until someone did do it. Now it's a regular occurrence. People are always running sub 10 seconds. I dont want this to sound big headed, which it probably does sound. But I like to look at my situation and think its a success, and a positive story. There isn't many success stories with CF. The only one I'm aware of is Nathan Charles who plays professional rugby in Australia. He's doing very good for himself.
It just shows you that you can do it, even if you have CF. We are all born with clear lungs, it's just our responsibility to keep them that way.

I will write an elaborate post tomorrow. I just wanted to post this one before it goes out of my head.



  1. totally get where you're coming from. I'm a CFer, I don't run but I used to go to dance classes up to 6 days a week, I played trumpet at least 3 days a week and went to singing lessons. Not once did I do conventional physio. My lung function has only started to decrease and inscreased exacerbations since I had to stop doing all these things, thanks to lack of funds and a busier adult lifestyle. My mood is less stable and I sleep a lot more.

    Now tell me which way was better?

    Don't get me wrong, I still exercise, just not as much or as often.

    I was lucky enough to have Drs and physios who understood that all the things I was doing were keeping me well, but as soon as I started showing signs of needing more than I was doing I was moaned at to do physio. Fair enough I guess, they only want to keep me well.

    Hope you continue to feel the benefits of the running, which I'm sure you will!

    1. Brilliant Ruth. Well get the running runners on, and get out there door. It's not a coincidence that I'm so well, and I run.
      It's coming into the summer months so you will have no excuse for not getting out there. :)

  2. Evan I take your point about running and the advantages it brings but everyone is different and some people with cf despite doing running may need to do physio as well because of the large mucus production they produce daily.By the sounds of it you are lucky in that you tend to have a milder form and your level of activity is adequate to keep the condition at bay(others are not so luck as you know as some children with this condition do all their treatments yet sadly die at early age ).

    Personally I find drinking loads of water helps as well(at least 2 litres a day) as this helps naturally liquidity the mucus and makes it less problematic on the lungs

    1. See my post under this one for the reply....

  3. Unfortunately I don't have a mild case, I just work extremely hard. If I don't run most days of the week, I feel myself getting worse. I wasn't trying to say that you don't need physio. I was stating that it doesn't work for me, whereas running does. It's not a coincidence that I run 100 miles and have never been hospitalised, or on IVs, and again, I don't have a mild case.
    Iv always been active, and have always taking my nebs etc. I see some people on forums saying that they don't use their nebs and meds every day, but wonder why they are in hospital. They seem to think CF is an easy thing to live with, and just take it for granted that they will die young.

    1. fair enough Evan I take your point about physio(and you are not mild) but you may be one of the lucky ones then if that you can get away with phsio if you do the running(I certainly couldn't and others out their Iam sure couldn't either)

      keep up the good work Ive done a bit of running and quite enjoyed it.Ps do you do any sprinting as well as part of your exercise as I know from what Ive read this is meant to be good as well eg develops a different type of attribute such as increasing muscle tone

    2. Why must I be the lucky one. Why do people with CF think that you are either "mild" or "a lucky one" instead of thinking, he must have worked his arse off to be that well, in which my case, that what I have been doing all my life. There is no luck in CF. you have it or you don't, and I just work extremely hard, and I'd say harder then most non CF people out there to stay healthy. You don't see a person without CF running 100 miles a week.

    3. I do sprint work. One works on aerobic fitness, which is just running around. Long exercise, whereas anaerobic work is short stuff, and can only be done in short periods of time. I find I get up more mucus doing sprint work or interval training.

    4. Evan .I think you deserve a lot of credit for doing the amount of running you day but Ive known serious cf patients who are no longer with us and phsyio was the foundation on which all treatment came from(which is why I feel its a important part of cf sadly never mind running the more serious patients may even struggle to walk around the park for 30 minutes) .No physio and mucus literally affected their ability to breath(they simply could not go without it other recent examples include a boy called Alex on channel 4 where phsyio played a massive part of his treatment).Fair enough if you do the running and it works for you but I always assumed that running would lubricate the mucus which made phsyio that more easier (hence easier to bring to bring the stuff up) which is my own experiences

      But I take your point if it works for you then Iam glad for you and like I said I do admire the commitment to the running(as it can be quite boring and difficult particularly in the colder months)

  4. Ruth - are you going to go back exercising and playing the trumpet??

  5. I still exercise, I do booiaka and zumba every week and do a lot of walking, but my knees and ankles give out if I run thanks to arthritis and I find it difficult balancing everything I need to do at times!

    It is great that you manage without physio because it's extremely boring! I still sing which often does the trick but still managed to dance and sing with pneumonia so need to be careful of smaller airways, especially at my weakest part of lung. I know that sounds crazy that I still did those things while sick but I didn't do anything else apart from sleep lol

  6. Fair enough comments but for some people with CF they can not exercise enough to bring mucus up, when walking to the bathroom makes you breathless and doing a 15 minute walk makes you tired for the rest of the day, you simply can not do exercise, never mind run!
    I never miss my treatment even on Christmas day! Yet my lung function isn't great and I struggle on a daily basis. When i'm well I exercise as much as possible and when i'm not well, getting ready for the day is difficult enough. I think it's unfair to say you work hard and that's the only reason why you are well, of course its a big part of it and well done! However I work damn hard too every day to try stay well and I still struggle.
    I think you must have a less aggressive form of CF (I don't like the term mild/severe either)for you to be able to exercise so much in the first place. I have never being able to run, even when I was child and I didn't even think about CF.
    It doesn't make your CF any less important or your efforts go less recognised, you can run more than most healthy people and should be very proud! But to assume people who go in hospital/need treatment alot don't try enough and assume they will die young is very presumptuous. You are judging something you have never experienced quite frankly. There are people with all types of CF and some look after themselves and some don't, some get very ill either way and some don't.
    Yes exercise is very important, but it isn't always the only contributing factor and physio is an alternative that some people find more manageable.
    Sorry for the long post, but I keep reading these posts by people with higher lung functions, almost the same as a healthy persons, assuming they know what its like to have half that lung function xx