Chronic illness can teach so many invaluable lessons along the way. CF has taught me to value every single day and to really enjoy every good day. Knowing at any moment CF can make my day miserable (low energy, GI issues, shortness of breath, respiratory infections, the list goes on) makes me so appreciative of every day I wake up and feel good! It has taught me to appreciate those around me as well because we never know how much time we have with one another, not only because of CF, but because those of us with chronic illness realize how fragile life is and no one is ever promised another moment.
However, in order to survive with a chronic illness and still function in a chronically well world I have found that I have adopted some less than healthy lessons along the way. I have learned over the years how to play pretend in a way that I can almost fool myself. Through the years I have perfected how to pretend everything is okay, put a smile on my face and act as if everything is fine even when I am so very far from okay. Living a life when my health often demands my attention and tries to take center stage on a regular basis has caused me to pretend to the outside world that those problems and sickness and hurt just don't exist. This has allowed me to get out and still live a fulfilled life despite CF trying to get in the way. And yet, when we pretend everything is okay (enough) everyday of our lives it can get tricky to know when to stop pretending and put ourselves, and even CF, first.
I, personally, could give a million examples of when I waited too long to raise the white flag and ask for help. Whether pushing through made me wait too long to call the doctor, not change antibiotics as soon as I should, commit to things I shouldn't, or show up when I should have stayed home it became a pattern I didn't know how to stop. Pretending I was fine and pushing through became such a way of life I got to the point that I just stopped being authentic in what I could handle.
See the problem is that by doing everything even when I feel bad I felt I was proving CF wrong and not letting it dictate my life. You hear it all the time in the CF community. "CF is part of me, but it doesn't control me" type "inspiring" quotes get ingrained into your mind. It is an attitude that is common among many of us with CF (and chronic illness in general). Push through, preserver, and live the life you want despite your health issues. At times this can be a good philosophy, but it can also discredit how much CF does play a role in our lives. If we are super honest with ourselves and with one another CF DOES get in the way. And you know what? It is okay to admit that it does at times.
In an attempt to not let CF win I would try to do too much just to spite Cystic Fibrosis. Yeah, I have an infection that is causing me too feel as if I am full to the brim with toxic waste and my fevers are causing every muscle in my body to ache, but if I pop enough ibuprofen I can show up and help out because otherwise CF stole this opportunity from me. Sure, I feel like death, but I don't want CF to ruin this time with my daughter/husband/friend so I will drag my tired and broken body to that birthday party/outing/dinner/event and pretend I am having fun.
And in the end I am realizing that by trying to prove to CF that I can pretend it doesn't exist and live a "normal" life I am actually letting Cystic Fibrosis have the upper hand. At times I am making choices to prove CF wrong rather than because I genuinely want to make that choice. When I feel bad, I would rather curl up in bed with a book or take a nap, but because CF is making me feel bad I often force myself out of the house anyway. So, in reality I am going out because of CF rather than staying in for me.
As my life gets more hectic I am trying to learn to balance what I can handle and what I genuinely want to do for me and my family and not just to prove to myself that CF doesn't have the upper hand. After 20 years of pretending I am realizing old habit are hard to break, but as I approach my mid-30s I realize I don't need to hang on to some of the old unhealthy habits of my youth and what better time to change for the better than today?