This might seem a little odd after my rant on here about gaining weight, but I also intended my post to be helpful to the CF community. Because, let's face it, as anyone who grows up in a CF household can tell you, taking care of a child (or a sibling) with a chronic illness is TOUGH. It demands a lot of time, energy, and money. Add to that the fact that CFers typically need more calories than the average child, and you have a recipe for overweight caretakers, family members, and siblings. When I posted the statistics, I had in mind those little safety videos you see in airplanes -- you know, the ones that remind you to be sure to secure your own oxygen mask before helping your child? Hearing these scary facts made me think "oh, gosh, I really hope all these truly awesome and devoted CF family members out there are remembering to take care of their own health too!" Because trust me, gang, we need these wonderful people, both in the CF community and in the world at large.
Anyway, I posted these facts with a quick statement of what I hoped was encouragement for my friends -- CF community or not -- and asked them to please remember to stay healthy and take care of themselves. For CFers (and some other people), this might mean gaining weight. For other people (and some CFers), it might mean losing. And for all of us, it probably means eating better and going to the gym/pulmonary rehab more, not to mention staying on top of important stuff like medical testing, self-exams, sun protection, and responsible alcohol or substance use.
Hey, it's important.
There's a lot of debate out there within the CF community over personal health responsibility. Exercise is a great example, where some people swear by it and others swear it hasn't done much for them, especially in terms of numbers and lung function. I personally don't find this dichotomy all that shocking: of course exercise is going to have different effects on different people, just like having the disease we collectively call "cystic fibrosis" means different symptoms and severity for different individuals. Of course we all know that exercise, as a general rule, is good for you. But it all gets a bit murkier when it comes to forcing yourself out of bed with yet ANOTHER fever and 25% lung function to go walk on a treadmill and cough up goo until you vomit. That's a tough pill to swallow sometimes, even for a CFer. On the other hand, a group of wonderful CF women I correspond with regularly on these types of issues recently pointed out to me that part of feeling mentally healthy as a CFer is the knowledge that you're doing all you can to prevent your disease from dragging you down. And that, according to most doctors and patients alike, includes stuff like nutrition and exercise. As well it probably should.
I don't have any easy answers on this one. I'd like to offer my personal perspective as someone who's lived through end-stage CF, which is that doing little things that offered me some "control" (even theoretical control) was a HUGE comfort to me right before my transplant. Making space for exercise in my own life was important because it left me feeling empowered and less helpless -- and I'll take empowered with low lung function over helpless and STILL with low lung function any day of the week. But again, that was only my personal experience.
I think the point is here that we need to be asking ourselves what we can be doing to make space for health in our own lives, whether we live each day with CF directly or not. We need to be securing our own oxygen masks, and then maybe we'll have the energy to look around and help others. Maybe it means getting to the gym more, or maybe it means finding another activity in your life so that it's NOT all about CF. Maybe it's as simple as coffee with friends or some time alone with a great book or finally taking control of that debt that's been harassing you or being part of your own cure by fundraising. At any rate, it's empowering. It's an anti-victim, no excuses stance. Most of all, it's about doing for yourself what you would like to someday do for others.
And that makes it a lifesaver.