There are those people that go with the flow and don’t stress as much about life events, but I would say a majority of people want to have control over how life pans out. I’m certainly the kind of person that needs to know how things will happen, I need to have a plan, and I worry about how my life will fall into place. Basically, I have a need to be in control. I have, for the most part, always maintained control over my disease, which is the most uncontrollable factor in my life. When I get infections, I get antibiotics, the infections clear quickly, and I am able to continue on with my life the way I have planned. I’ve never had any major complications, besides advanced lung disease that has slowly progressed, so I can say, for the most part, there have always been immediate solutions to my CF problems. I have been in control of how I am able to manage CF.
This has most recently changed for me over the past few months. Developing a persistent pneumothorax (lung collapse) that has required 3 hospital stays a few weeks each, 3 chest tubes, and finally surgery to hopefully fix the issue for the future, has required me to take each day as it comes. If you are interested in understanding more about pneumothoraces, there is a previous CFRoundtable article on the topic. (I have had one before a few years prior.) These hospital stays have tested my patience and it has been very difficult and stressful to try to accept the loss of control in not knowing when and if my lung will collapse again. Before this episode, in the fall, I was the healthiest I had been in a long while, with a great exercise routine, I felt my lung capacity improving. These few months of illness has knocked me off my feet completely and I feel as though I have a mountain to climb to get back to the condition I was in before. My endurance, energy, and weight have all suffered.
In between episodes of collapses and since my surgery, I have tried to take on a “one day at a time” attitude. This has been beneficial in helping to keep stress levels down. If I were to stress every moment about my lung collapsing again tomorrow, next week, or next month, I wouldn’t be able to live my life. I would be a complete basket case. I certainly have my moments, but overall I feel as though I have been able to maintain that mindset and just see what happens. I try my best today and I wake up to see what tomorrow brings. Adversely, I feel this has at this same time, somewhat diminished my enthusiasm for future events that I have planned or want to plan. Because I just don’t know what will happen, I don’t want to get too excited to then possibly be let down. I’ve always been one to live life with vigor and I love to do many things, so this isn’t the way I intend to stay, but it’s the best coping mechanism I have for right now. I believe as my body gets stronger slowly from surgery and I heal more and more each day, I will again have the enthusiasm I’ve always had and continue my future adventures in life.
Sharing my brief story helps me get through this time and hopefully can be helpful in some ways to my fellow CF family and friends as well. Stay well. –Ella Balasa (firstname.lastname@example.org)