Of course, that’s ridiculous. I’ve always had CF – I just didn’t behave like I should have given reality. Treatments were an option based on how I felt at the time and how effective I thought they were. At the top of the list, and the only indication in lifestyle, was my definite need for enzymes. Even those would get snuck in at a meal without people being wise about what was going on. I had accepted that if I was going to need IVs every 6-9 months, why bother with all of the time, effort, and money to go crazy with treatments that, in my mind, may or may not be as effective as I deemed to be a worthwhile treatment.
I avoided stairs on campus whenever possible. I always seemed to have an excuse to not help someone with a physical task as simple as bringing something in from the car because I didn’t want to have a spaz. I didn’t remember what a semi-deep breath was like. I didn’t pay attention to my weight because it was depressing to weigh in under 110 and I had no idea how to look “normal.” I didn’t want to exercise because I felt like I couldn’t exercise (remember the part about stairs?). I wasn’t as happy; in fact, I may have actually been a bit of a drag at times. I am the eternal optimist to the point of being annoying, but I felt even that slipping away.
Along came the shift in mindset the week I started CF Fatboy to change all of that. I got the bigger picture and got the crazy idea: what if I’m actually able to reverse the effects of aging with CF and become as healthy in my 30s as I was at 18? What if? Is it going to be worth it? Well, it sure beats the heck out of an automatic need for a transplant… one which I might not be eligible for if I’m not doing everything prescribed. I know for a fact that my doctor won’t put you on the list if he catches wind that you’re non-compliant, so I’d be up a creek without a paddle if things took a turn for the worse later.
Here is my new view on living with CF since my 2010 epiphany:
It’s okay to pretend you don’t have CF around other people. It’s up to you when you let people into your “circle of trust.”
Don’t let CF slow you down. Make it drive you to bigger and better things than you think you can do.
Don’t meditate on what you used to be able to do, rather use that as a goal to return to. For me, it’s to run (competitively, not some crap jog/shuffle you see on the side of the road when people think they’re jogging, but they look like an idiot) in the Gasparilla 5k next February. I used to run track, play flag football, men’s softball, and indoor soccer (the last 3 into my college years). I shall return in my 30s.
What you were born with is better than anyone else’s equipment in you. As awesome as it’d be to take a deep breath with new lungs, make it your goal to take a deep breath with lungs. Even after insurance, it costs about $1,000/mo to keep new lungs alive and your life is wrecked for 10 weeks of monitoring, physical therapy, and recovery.
Everyone can improve if they start early enough, barring really nasty resistances or other complications that exacerbate the CF. Beautiful started finding the stories and sending them to me – people who went from 30% to 68% or higher. At 60%, I was doing windsprints and beating guys to the end zone for the long pass. I want that again. I will have that again, and you will see it happen.