• The paradox of CF and exercise

    Posted by jenny-livingston on January 3, 2020 at 12:47 pm

    The paradox of cystic fibrosis and exercise: the symptoms of this disease can make it incredibly difficult (and sometimes downright painful) to workout, but exercise is known to have significant benefits that reach far beyond better lung function. Regular exercise can also help strengthen bones, manage heart disease and diabetes, and improve mental health.

    I’ve fallen off the exercise wagon in recent months, and I’m having a difficult time getting motivated again. I know the benefits, and I know that I feel better when I have an established exercise routine, but I’m in that phase where exercising is exhausting and makes me feel worse rather than better. I’ll eventually get through this, but man… it’s not an easy thing!

    How do you get/stay motivated to exercise? What are your favorite types of exercise? 

    paul-met-debbie replied 4 years, 3 months ago 2 Members · 1 Reply
  • 1 Reply
  • paul-met-debbie

    January 6, 2020 at 9:25 am

    Well, 30% fev1 and neuropathy in legs and feet does not a Roadrunner make. So I do things slowly. I found out that exercise is only benevolent when it becomes a sustainable routine, so there must be some internal motivation to it. If it is solely with a sense of duty (“I should …”) you will fall off the wagon repetitiously. So my advice would be: look for the things you already love doing and make an exercise out of those. And of course, you love the body (if you don’t, work on that!) so that becomes internal too.

    In my case, I walk the dog every day for 1 hour and play the piano for max. 2 hours a day. Yes I know, it is a sitting job, but don’t underestimate Chopin. I tend to be quite pooped after a couple of Polonaises. After that, I exercise my temporal lobe (afternoon nap).

    And I also consider mental health a very important thing. Remember this: A quiet mind is your bodies best medicine. Since I have to do the nebulizing thing twice a day anyway since I was 25, I renamed it into a “Pranayama meditation” (twice daily for 1 hour each) which is very clearing and thins out the mind (you really got to lose your mind!). I did not know about meditation until I was 45, but in retrospect I was effectively doing meditation for 15.000 hours when I found out. So then I knew where I got this peaceful feeling from. Talking about double-blind research: I did not know it was meditation and I didn’t know I was doing it. And it worked flawlessly.

    Never over-do exercise: if it makes you feel worse, you are doing something wrong or too much. Exercise must fit the current state of your body, which may change from day to day. Learn to feel your body and adapt the exercise to the moment. Don’t be macho about it. There is no shame in skipping a day or longer if your body is really not up to it (of course, never skip treatment or medication). During an exacerbation you have to adapt also, and when feeling better, slowly return to the normal level of exercise. Exhausting your body is not a good thing for your immune system (note how even many top-sportspeople have all kinds of infections and inflammations when they train too much or do too many games).

    Happy sweating and cheers from the Netherlands (www.parkinsjordaans.nl)

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