Friday, April 8, 2011

Is Exercise for CFers Different?

I've had this question posed to me more than a hand full of times both on Facebook and CysticLife, so I thought I would answer it here as well as pull some quotes by other very knowledgeable cysters and fibros. The following question was posed by a fellow cyster and to be honest, I was a little bit shocked by her doctors attitude (although he may have had the best of intentions):

Okay, so whenever I think of excersize, I typically think of going to the gym, riding a bike, jogging, or doing something with a little sweat suit on. Basically, getting strenious excersize. So I told my doctor that I get totally short of breath when I do things like that, and on a bad day it's even hard for me to climb up my stairs at my apartment. So he told me that excersize for us, is basically something that gets your airways stretching and get's you huffing a little hard... And that if we are excersizing to the point of us laying on the floor sucking on our inhalers (which I have done, lol), we are actually probably doing more damage than we are helping ourselves. What do you guys do as far as a 'light load' of excersize, that gets your airways flowing, but doesn't make you totally SOB and have to sit down? I find it hard... Maybe it's just me.

The following was my answer to her:

I think it's important to understand that EVERYBODY sucks a little wind when exercising, especially those of us who are out of shape. I agree with your doctor to a point, but I myself wouldn't accept not striving to exercise like everybody else.

When I recommitted myself to exercising, last year, I couldn't jog 1 minute with out stopping. I got on a running program and in 10 weeks ran 3 miles. It's important to go at your own pace, but to also set yourself a goal and then set out to accomplish this.

It's also important to point out the benefits of exercise to lung health. Last January my FEV1 was in the 20's, I then recommitted to exercise and by October had my FEV1 up to 68%, the highest since 2005!!!

That's what I think is SO important for every cyster and fibro out there to understand, Exercise is tough for everyone, especially when just starting out. Think about it, why else would there be so many people out there that say exercise is their New Year's resolution, EVERY year. It's tough. It's NOT EASY to stick with. And yes, it may be tougher for those of us with CF, but the case can easily be made that it's also more valuable. I've never ever met a fellow CFer that regretted exercising. It's quite the opposite, they're ecstatic. To put it simply, do you find more joy when you accomplish something that took no work or sacrifice or something that took a ton of it?

I like how this fellow fibro put it (who by the way is training for an Ironman):

Even though we have CF we can still do anything anybody else can do our training is just going to be a little harder and we'll have to train a little longer, but we can do it. The biggest thing you have to learn is patience when it comes to endurance with exercise it takes us a little longer to build it up. Stick with exercise, it will only benefit you.

He's so right. We CAN do anything if we set our mind to it. It's often times just a case of setting a goal and doing absolutely everything to accomplish that goal. Don't let setbacks discourage you either, use them as motivation to propel you forward on your mission. Listen, there's days that I just can't drag my lazy butt out to run. It happens. But when it does, I make sure to really step it up the following days to "make up" for the time lost. We have a tendency to allow one bump in the road become an impossible obstacle and it doesn't have to be that way. Get over the bump and then put the pedal to the metal.

Comments (17)

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Thank you for sharing. My struggle is getting my 9 year old to exercise, trying to find something he likes...I recently started 5K's and am trying to get him maybe interested.....
I struggle to comprehend why some CFs don't exercise, it's hard for me, as any time i get run down i get sick, so pushing myself to the limit is counterproductive. But, i've been useing a training plan for the last 5 years and, slowly it must be said, i'm actually getting fitter, healthier, and having less IVs, now almost half what i was having just 2 years ago! It is hard, but the more exercise you can do when you're sick, the more you'll be able to do when well, and the healthier you'll be in the long run!! My physicians have always pushed me to do more exercise, and i'm so glad they did!!
this is great, re-motivated me!!!! thank you for all of your postings!!
jessica
It's not that exercise for CFers is different, it's that exercise for EVERYONE is different. One man's 5K is another man's NY marathon ;)

I think what a lot of people forget (and what your story is so good at reminding us, Ronnie) is that exercise is a SKILL SET. And, just like any other skill set, it takes patience, practice, and a good deal of determination to develop. Think of it this way: when you imagine painting, you might imagine a Picasso or a Monet. That might be your goal. But when you sit down to paint, particularly if you've never painted before or if it's been a long time since you last tried, and you attempt to paint an exact replica of a Monet right off the bat, you're probably going to get frustrated and disappointed. But you wouldn't sit there and blame your CF for your inability to duplicate "Waterlilies" right? No, instead, you'd realize that the problem was most likely in your lack of practice and skill level. And then you'd have two options: either declare yourself a failure b/c you couldn't paint like a master right out of the gate (bad option), or decide that you're going to sit down every single day and work on your art, taking baby steps if necessary until you reach your goal (good option).

Your doctor is half right, in other words. Exercising to the point of collapse is probably a bad idea, but the reason you're collapsing probably has less to do with CF than with your lack of a particular skill set right now. So maybe adjust your expectations a little, and realize that it's okay to start off at a brisk walk rather than a run (in fact, it's BETTER to start small and work your way up!). You can still wear the cute little sweat suit, just make sure you're building yourself UP rather than running yourself DOWN ;) And every day try to push it just a little further, whether that means going and extra couple of blocks or maybe breaking into a jog here and there for a couple minutes each time. My guess is that as your body develops the skill, your endurance will improve and you will find yourself able to do more and feel better about it.
http://chestjournal.chestpubs.org/content/92/2/27... ---- is a study from CHEST, a lung publication in 1987. They knew then there were inherrent benefits to weight training and CF. The question is why hasn't it been prescribed to us like our physio and medications??!?

I'm developping a documentary to tackle that question, and to see if we can put some fibro's and cysters through a boot camp!
1 reply · active 788 weeks ago
I've been told by 2 different CF docs that excercise can replace one session of physio if you are healthy enough to exerciser at a good rate.
Holly Thomas's avatar

Holly Thomas · 788 weeks ago

Hi, this is my first attempt at discussion in this website. I was diagnosed with CF in 1962 and my parents were told that I would not live to go to school, that was three years. I am now just a few months away from being 50. I have three brothers and as we grew up, the doctor and my parents encouraged me to play and do the same things my brothers and friends did. I did, I played football, softball, tennis, basketball, swimming, sang in choir, and was in band. On my own, I took tap, ballet, jazz, and baton lessons. I also rode horses and hauled hay and was a swimming teacher and lifeguard. In my twenties I was part owner in a fitness center and a member of Wal-Mart management. I became a body builder during that time. In my thirties I learned to play golf. Through all of this my family camped and canoed. Each person has their own limits, but they each have to take certain risks in order to find out what those limits are. Working out to the point of gasping for air and collapsing is not a good idea, get a trainer or training session once in a while. Go slow and work your way up. Choose things that interest you.
2 replies · active 788 weeks ago
Holly Thomas's avatar

Holly Thomas · 788 weeks ago

I workout three days a week, especially since my double lung transplant last year. during my workouts I walk/run on the treadmill and lift weights. Once a week I take a step class and a Tai Chi class. I also swim, which by the way is the perfect workout for everyone. I work part-time and am continuing college after thirty years. We can do anything we set our minds to, I plan on being a part of the transplant games and am getting ready to take a class on running marathons. Get out there and do what feels good. Try everything especially your children with CF. The more you do the further you will go!! Sorry this was so long, I just hope it encourages someone to not worry too much about what they can't do and figure out what they can do!
Holly, just wanted to say congrats on your transplant and your active, full life! I am also listed and loved reading your post -- such a great inspiration. Thanks for sharing and happy early 50th bday! Here's to many, many more.
Yeah i don't exercise much Anymore, I used to skateboard for about five years then i Quit, all thought i had fun doing it with the other guys. I believe exercise is very important for Cf patients. Now days when i exercise Or try to work out i cough up a lung and brings out the mucus so Agree with this blog. Thanks ronnie
I agree with Piper but I also believe that exercise or anything really is a Mind Set thing. If you set your mind to it you can do it. I ran 6 miles a night in High School Track, ran the mile and 2 mile in competition (I sucked and usually came in last) but I finished and had good personal times...Plus most importantly I am still here and fairly healthy at 33. Its a long story but I quit running (doctor told me my heart would explode if i ran on Cipro) and got back on the bandwagon a time here and there. I just started jogging consistently last week and it feels AMAZING and I just had to set my mind to You Have to Run to maintain what I still have. Truly it's a matter of life or death - it's like another breathing treatment you just fit it into your routine. I get mad now when I can't get outside to jog/walk because of the weather
1 reply · active less than 1 minute ago
That's awesome Jeanie!! Maybe you could do a guest post about your experience with CF and running? Let me know :)
Mike Burke's avatar

Mike Burke · 729 weeks ago

If your struggling getting you or your kids to keep exercising I think Ronnie's advice is great. Make it fun. I would add that you need to emerse your child or yourself in that community. If it's running, get lots of running friends. If its biking make tons of biking friends. They will help motivate you and you will build lasting friendships. As an added bonus they will fall in love with CF as their charity. I coached a guy for his first half marathon. He had just lost 200 pounds but coudn't maintain the lifestyle by himself. He joined our runners club and now 4 years later has made a new lifestyle. He can't imagine eating the kind of crap he used to. Make it a challenge! Make It Fun! Make it your lifestyle!

Stay Strong!
1 reply · active 729 weeks ago
Or, maybe she needs to have her O2 checked while excercising- she may need supplemental O2 during excercise. Or, maybe she has excercise induced asthma. Did her doctor check any of those things?

Excercising to the point of gasping, etc. and getting your heart too high IS bad for you ;) . And maybe starting out more slowly is the better way to go (stretching, pilates for beginners, etc.) if that's where trying more intense excercise brings you to in hurry. For me, excercising (swimming, 4+ years, 3 times a week) never a truly noticable job bringing up my FEV1, but I felt healthier, stronger and could do more things than when I'm not excercising. I'lve also found that once I got over 30, I pretty much HAVE to excercise to keep doing just the daily stuff I did when I was in my 20's, changes in FEV1 aside ;) .
2 replies · active 729 weeks ago
Pardon the typos/omitted words- typing with a cat on my laptop :P .
Those are great points Andee. I would sure hope that the doctor looked into that type of stuff. I agree with you on that last sentence too, I'm in the same boat :)

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