Compliance is a big part of living with CF. I don’t know of any CFer that hasn’t had a time where they slacked off and didn’t do all that they were supposed to. Most of the slacking comes during the teenage years to early twenties. It is hard to see all your friends living a normal life. They don’t have to take time to do breathing treatments or have to take medicine every time they eat or go in the hospital. You want nothing more than to be a “normal” kid/person. CF gets in the way of a “normal” life. CF is my “normal.” It is all I know but that doesn’t mean that I haven’t dreamt of what it would be like to not have to do breathing treatments or be attached to an IV or to not take medicine every time I eat and all the other things that come with the CF territory.
Compliance is hard. It is hard to find the motivation to do what you are supposed to even though you know it is what you need to do to keep on living. No, not doing a breathing treatment or two will not automatically put you on your death bed but it will make it easier to skip the next time and the next. Then when you have skipped those few breathing treatments here and there it makes it easier to put off hospitalizations and IVs. It seems to be a vicious cycle and once you get the ball rolling down the hill of laziness it seems to speed up the progression. CF is a progressive incurable disease therefore our only form of defense is to take the best care of ourselves to try and slow the progression. If you don’t do the things the doctors have told you to do (ie; breathing treatments, take enzymes, take all medicines, airway clearance, exercise, etc.) you are basically helping CF win. With that said, I HATE to exercise. I like to be active and not really know I am exercising. For example, doing yard work, cleaning, walking the dogs or similar things. Walking on a treadmill is so boring! I know I can try harder to exercise more but I have no motivation for that “E” word. My husband helps out by parking in the “back 40” of parking lots. When he pulls into the parking spot in said “back 40,” he says “AIRWAY CLEARANCE!!!!” I just smile and get my butt to walking.
Adjusting to new baselines and new struggles in life with CF is hard. It is hard to add new things in the routine when you already have so much to do. I had to learn the hard way that compliance is key. When I was a teenager I did not want to do what I was supposed to do. I skipped breathing treatments very often, I would let my VEST run like I was wearing it but I didn’t have it on and I didn’t take my enzymes when I ate. All of the slacking got me quite a few trips to “club med” for IVs and respiratory therapy and threatened with a feeding tube because I had lost so much weight. My doctor also gave me a stern talking to about what would happen if I continued on the path of not taking care of myself and that was scary. I didn’t want to be that close to death at such a young age especially when I basically put myself there and I could do something to stop it. It’s one thing when you have pushed on through life and done what you could to fight but giving up is not good. As I have said before my motto is “never give up.” I never want to throw my hands up and let CF win and by that I mean that I didn’t do anything to fight CF but just let it run its course. I am too stubborn to let that happen. There of course are days that I want to and do (for a short time) throw my hands up because I am so tired of fighting but it doesn’t last long. I get worn out from the day to day with CF but I still continue to fight. I am by no means perfect nor do I have it all together but I sure as heck will continue to fight. Stubbornness comes in handy sometimes.
If I could impart anything into someone about my past and compliance, it would be…”yes it sucks and isn’t easy but you have to do it. You should to go down fighting!”
Until next time…