Saturday, July 30, 2011

CF Control, progression, and guilt

I have read this challenge on several blogs and decided to take the challenge myself. I had to go through several blogs to find the original poster bc I felt they deserved the credit. Anyways, was the cyster that posted the challenge.

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 ones.

The problem with a progressive disease is that as we decline we have no idea if it was due to something we did or did not do OR if it is the natural way our lungs are declining. We are given tools and meds in order to increase our chances of keeping infections at bay and our lung functions as high as possible, but these tools do not guarantee success. In fact, even with all of these tools we will all most likely die of this disease. The gray area creates problems. Because no doc can say your decline was absolutely because you missed that dose of pulmozyme one too many times, or the decline was 100% unavoidable it leaves the patient to always wonder. What else could I have done? Could I have gone to the hospital sooner? Could I have worked out more? The list goes on and on. I wanted to explain my story of guilt and feeling like I wasn't a "good" enough CFer and what I feel about compliant and decline today.

I had an unusually late diagnosis at the age of 14. This created a few obvious problems considering I was a middle schooler and a teen. I was told by my doctors to take a few inhaled meds (puffers) and to use my flutter once a day. I look back and think how EASY I had it then, but in my illogical 14 year old brain I used to think, "I have lived 14 years without ANYTHING it is not a big deal if I skip my flutter." I HATED that thing and I HATED looking at my mucus. When I started my flutter I used to do it in the bathroom with the lights off so I wouldn't have to look at the disgusting slime coming out of my lungs.

As time went on I was instructed to do more to take care of my health, but I was so determined not to let it interfere with my life that my health took a back seat to having fun. I wanted to live in the dorms in college which meant late nights and MANY missed treatments. I wanted to be seen as normal so I hid my disease from roommates and boyfriends resulting in more missed treatments. I decided to go abroad for a summer and volunteer, but couldn't bring my vest. My health during this time slowly declined.

I am now 27 with lung function much lower than it used to be. Was this because of my spotty compliance? Was it natural progression? I don't know, but I cannot help feeling that I had a lot to do with where I am today, both good and bad.

I carried a lot of disappointment and hate towards my 14 year old self for feeling that this disease was not serious and therefore I did not need to be compliant. I carried a lot of shame and disgust for hiding my CF from others. I was putting what others thought of me OVER a long happy life? Really!? REALLY?! This guilt weighed heavily on me for a long time!

BUT I have to say that I have been able to let the feeling of guilt (mostly) go. I was a child and I made childish mistakes. As a teacher, I try to picture myself as one of my students and it puts it in perspective. I was LEARNING how to care for myself and this disease. I made mistakes and I made some good choices too. I think it is important to do your best and don't stress over the little mistakes, we are not perfect and we were never expected to be perfect.

Today I am super compliant. I have made my health my one priority, but I am not perfect. With my imperfections I find the guilt still sneaks in. If I decided not to go to the gym in order to go to coffee with a friend I feel twinges of guilt. If I forget a dose of Cayston I feel guilt creeping into my thoughts. I have to constantly remind myself that I am doing my best while still have a life I enjoy! I also have to remember that we are not in control of this disease. We cannot stop decline or new bacteria from finding its way in our lungs, BUT we can do our best to help our bodies fight this never ending battle. I like to think it is a 20/80. 20% is controllable (although this may be generous) and 80% is nature/genes/whatever. I work as hard as I can to help out my 20%, but I also know when I get an infection that I can't shake or if my numbers drop it is not my fault. At that moment we can reassess our 20%. What else can I do to make myself healthier or feel better? But knowing that I am not the one in charge of when my lung function drops and infections arise sure makes breathing a little bit easier.

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