Tuesday, July 20, 2010

How I REALLY Feel!!!!

I wanted to follow up on a great post that Mandi did yesterday with my thoughts on the subject. If you didn't read her post, make sure you click here. It was basically about Mandi, for the first time, really exploring how CF really felt for me. First thing I want to make sure you guys know, is that Mandi is very attentive to my every need and she has asked me time and time again how I feel and what my lungs feel like. The fact that yesterday was the first time that she felt she got a deeper look is completely my fault. As she eluded to, I'm not one to really think about how I feel and if I do, I usually the last one to verbally express it. A fellow cyster put it well today when she said

"imagine u cut your finger pretty deep while chopping veggies one morning. u would notice it alot at first but if , say , you've got into a really good show on tv u would stop noticing as much quickly. probably u would think about it more in the commercial break..etc i think cf is like that and things have to be newly or excessively bad for us to REALLY notice"

I think that's a really good analogy. Often times when I'm not feeling great, I just try to distract myself. I don't sit around thinking about all of the parts of my body in pain or the fact that my lungs feel like they weigh 400 lbs. No, I choose to either do things that can possibly help that pain or sickness go away or I simply don't acknowledge it. Actually, I shouldn't say that, I'm very in tune with my body and generally
know exactly what needs to be done. So, I acknowledge my pain or sickness within myself, but I rarely verbalize it. It's of course important not to ignore our bodies and pretend nothing is going on. That's how we can crash and burn pretty quickly (just look back to the beginning of 2009 if you want to see that in my life). Yes, it's important to acknowledge what's going on, but then it's equally important to respond in the correct manner. If you're felling bad this usually means increased activity, treatments or a trip to the doc. One thing I will say, as I've gotten older, I've learned to respond better.

Which leads me to my next and most important point- just because I feel this way from time to time or sometimes often DOESN'T mean your child feels this way. I repeat, I may have lung pain almost everyday, your child may NEVER have lung pain. I saw too many comments yesterday that led me to believe that parents were freaking out that their children felt horrible all of the time and just didn't know how to express it. While this could be the case, chances are, it's quite the opposite. Your child probably feels absolutely fantastic most of the time.

I didn't "feel" CF until I was in my early to mid-20's. That's not to say I didn't see the affects of CF. I've been doing multiple treatments every day from the first time I was able to form a thought. I've been in and out of the hospital for tune-ups since I was 8. I've been consistently coughing up blood since I was 12. I
"died" when I was 17. This isn't to scare you, this is to show you that although that stuff was going on, I still felt FANTASTIC. I often said that "I don't really know I have CF unless I'm in the hospital or doing my treatments". I was too busy hiking 10 mile hikes every Sunday at the age of 8. Too busy playing football, baseball, basketball and soccer at the age of 12. And most importantly, graduating from high school and figuring out what college I would attend at the age of 17.

It wasn't until I was out of high school and started blowing off taking care of myself that things started to change. I must stress however, I've always been faithful with hospital stays and treatments. Here's what I wasn't though, flexible. I thought since I only had to do 1 to 2 treatments a day in high school to feel awesome I could pull off the same thing in college. (Sound buzzer) I was wrong. When my activity level dropped, my treatments should have increased. They didn't. Then I got sucked into the faulty thinking of, "well, I'm getting older, lung functions will drop as I get older". Seriously, screw that! I'm so mad that I fell for that crap. My lung functions didn't drop because I was getting older. They didn't drop because I had CF. They didn't drop because "that's just what happens". They dropped because I was immature and didn't adapt to my circumstances. They dropped because my favorite bar to go to was full of smoke. They dropped because I stopped working out. I didn't start to "feel CF" because I had CF, I started to feel CF because of me and the choices I made.

I'll leave you with this quote from our sermon this past Sunday as I feel it really speaks of my CF journey these past handful of years:

"Being mature isn't how much you know, it's what you do with what you know"