A fellow blogger, Piper, over at A Matter of Life and Breath wrote an amazing blog post yesterday and extended a challenge to others to write about their thoughts on CF control and progression. So here goes...
I am an old CFer, who has by luck or biology or by the grace of God, had an easier road than most with this disease. It has limited me little up to this point and for that I am extremely fortunate. However, I don't ever feel like I have "control" over my disease. Instead, I feel like I do what I can to "manage" my disease(s) on a daily basis. It takes A LOT of work. It take enormous amounts of patience.
Sometimes, it even takes giving yourself a break. Allowing yourself to not be perfect. Treatments are crucial...compliance is so very important... Yet, sometimes, life gets in the way. My personal definition of compliance involves working hard and doing your best. Everybody's best is different. I think people in the CF community like to compare each other. If this one is running a marathon, while that one walks around the block for exercise, the one who walked is not doing "good enough". My wish is that people would stop making these comparisons. There will always be someone doing more than you. There will always be someone doing less. I think each of us should only judge ourselves when it comes to self-care.
I also think that sometimes a person can do everything by the book, yet still decline. This is the nature of the disease. I think judgement coming from others regarding this decline is harsh. That person who is declining is often judging themselves harshly enough already, even if they have done everything in their power to stave off the progression.
This is going to sound odd to some people, but I honestly feel judged for being "too healthy" within the CF community (no, I'm not complaining about being a too healthy CFer...I'm fortunate!). A lifetime of doctors, hospitals, pills and daily treatments doesn't make me a card-carrying CFer in some people's eyes. Yes, I have been told this directly. My lung function is not low enough to qualify. I haven't needed IV's enough times. I have been told that I shouldn't have feelings regarding my CF, because my road has been easier.
Here's the deal. This is MY experience. This is MY journey. These are MY feelings. I admit that my road has been easier, but I am entitled to my feelings, fears, worries. Just as I am entitled to celebrate successes without being judged. I wish more people were accepting of that fact that EVERYONE has a unique experience...all of them valid. Yet, I know that the judgement will continue to exist. Honestly, it's human nature. There are people who feel better about themselves when they put down others. I consider that the judges problem, not the problem of the judgee. So, I have been feeling excellent lately! So much so, that I have had very little health-related news to blog about. Yet, the MAC infection persists. I have an appointment in a week in a half, where I will be cultured to see if the MAC has been suppressed at all. If not, we may need to switch things up again. I struggle with the unpredictability of this disease. I think I keep motivated to exercise regularly and be compliant with my treatments to give myself a sense of control. It makes me feel like even if nothing is going to change, at least I'm doing something.
These are my jumbled ramblings about compliance, judgement and progression. If you wish to take the challenge, read below... 1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog. 2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity. 3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges. 4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below. 5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved one's.