Bob Seger’s voice always gets me, resonating with soul and purpose. And I love this song. Even though it’s not about health struggles, I hear that song and it makes me think about the day to day struggle with CF. Since it is a progressive and chronic disease, things only seem to get tougher and tougher and the hardships more apparent as time goes by.
The main struggle for me is lung function. Two of the main components or benchmarks that CF teams go by is the FVC (Forced Vital Capacity) and the FEV1 (Forced Expiratory Volume in 1st second). Every time you go to clinic this is the first thing they do. And it can determine whether you get a relative clean bill of health for that day, or they decide to throw you in the hospital. It can be jarring too, because sometimes you feel pretty good and your numbers tell a different story. It can be pretty deflating. Now a normal person would have a FEV1 of 100%; most people don’t have obstructive pulmonary disease! So they might not know what we cystics go through. Imagine this: put a big spoonful of peanut butter in your mouth, attempt to take a deep breath, and blow out through a straw. Tough huh? Yeah it is, and it seems as time goes by my straw gets narrower and narrower.
I used to have a FEV1 of 50-60%, when I was a little younger and more of a spring chicken. Now on a good day I’m about 40%, and the bad days the percentage is markedly worse. No matter what I do, it seems I can’t fight the current and the progression. I have more difficulty with exercise and exertion, both in length of time and intensity. It feels like…….running against the wind. And not just a light breeze here. We’re talking 40 mph winds. Every step forward feels like you’re taking 2 steps back. It can be pretty deflating, and make you want to give up. But as Tom Petty says” You can stand me up at the gates of hell, but I won’t back down!” Sometimes that is easier said than done, but I try to keep that in mind when I don’t want to do my treatments or exercise. Even as my exercise routines are not as impressive anymore; I am pleased with a brisk walk these days!
But I can’t stand still, because that will only make the wind stronger, the quicksand deeper, the current more forceful. We all have our struggles that can make us feel like we are fighting against everything, against successes both big and small. These are some of mine. Like running against the wind.