As I child, I was not taught the importance of my treatments (then it was mostly nebulizers and manual chest percussions because the Vest was not made). In middle school, when the Vest came out, I felt like I was diagnosed with CF for the first time because it was the first time that daily treatments were "forced" (as I felt) upon me. I didn't understand why all of a sudden I had to start doing all of this stuff when I didn't even feel sick. And I hated that the treatments made me cough because then that made me feel even less 'normal' like I had been for the past 13-14 years.
It was a constant fight between my parents and I throughout middle school and high school. I came up with every excuse in the book: "I just ate and it hurts my stomach; I'm tired; I have homework; they don't even do anything for me; I want to go hang out with my friends"...I was very rebellious against doing my treatments because I did not want that to become my 'normal' or part of my routine. I did not want to accept CF as a regular part of my life - I wasn't ready.
What I didn't realize then, that I do now, was that I could have been making myself even healthier and feeling better than I was! But I feel like every person Cystic Fibrosis needs to learn this on their own. Sure they're going to hear it from their doctor, but it's something they need to realize on their own time. From my experience, it seems like a lot of CF teens go through a similar stage that I went through, and I'm sure our parents were scared out of their minds because we're not taking care of ourselves. But if it takes seeing their PFTs going down, or maybe as extreme as a hospital stay to get that wake up call, then sometimes we need to realize this on our own to then take ownership of our health.
Turns out that I wasn't ready to take complete ownership of my disease until I met someone I wanted to spend the rest of my life with. I didn't want Tim to have a sick girlfriend in college. I didn't want him to be embarrassed by me, and I didn't want to hold us back from doing normal things together because I was sick. Being with Tim in college was (and is still) my motivation to keep myself healthy. I want to be around for/with him for as long as possible. What kind of wife would I be for him if I neglected my health?
So if you're a cyster or fibro who's struggling with your treatments, my advice to you is find your motivation. What do you want to do with your life? Will you be able to do that if you're not healthy? Set goals for yourself - start small, but setting goals was a huge part of how I became so compliant. And start now. There's no point in saying, I'll start doing all of my treatments next week -- do it now. It's not easy, but it is possible! NO excuses and don't give up!!!
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