COPD. Chronic Obstructive Pulmonary Disease. Emphysema. Chronic Bronchitis. There are days I feel I am suffering from an overload of my disease. I want nothing more than to stuff it in a box and put it on the shelf, even if it is just for one day.
My first thought goes to breathing
When I open my eyes in the morning, my first thought goes to breathing. I take a breathe in. How is it? I cough and clear my lungs. I get out of bed and take my first inhaler of the morning. By the time I make my way to the kitchen for coffee, breakfast, and even more medicine, I can tell what kind of day it is going to be. Some days it takes a few hours. I feel like every morning I need a conference call with my lungs and go over my to-do list together.
I want normalcy
My illness is never far from my thoughts. My slower pace and stopping to catch my breath has become second nature. What I eat throughout the day is dictated by COPD. Heavy foods and portions are a no-no. One forkful too many and I am uncomfortable for several hours. Making time to exercise is part of my daily routine. I am a positive person, but it does get tiresome. Then I feel guilty. I should be more grateful. My COPD is considered severe, but I know of others much worse than I am. Today, I don't want to be thankful. I want normalcy. I want spontaneity back in my life. I want to throw out the oxygen tubing and be free.
What to do?
What to do when it is an overloaded day? Take a break. I allow myself a pity party, for at least one day. The couch, the tv remote, and a feel-good show to binge-watch. We all need a mental health day. Managing life with COPD is a lot of work. I make it a habit not to allow more than one day on the couch unless I am having an exacerbation.
What I try not to do is complain to my family or friends too often. As much as they need to understand this disease and know when we need help, they can have overload too. We are living with it daily, but so are our loved ones. It has affected their lives as well. A very close friend once told me they were sad for me having this disease, but they were sad for themself too. We did a lot together socially. When my life changed, hers changed. Our conversations were now different because they were becoming about my illness, not about the interests we shared as friends.
Sharing the daily struggles
Communities such as this, COPD.net, are perfect platforms to share our struggles, fears, and triumphs, without constantly discussing it with family or friends. Journals are another way to find release. Many of us complain about the loss of friendships. I have had my share, but I have had to look back and wonder how much of a role I played in that. COPD changed my life, but it also began to change the conversations I was having on a daily basis. It can be all-consuming. I had to learn to not allow it to devour me and my entire life and those around me.
The overload days will probably always show up here and there. While unpleasant and usually emotional, they can also be cleansing. I am more prepared for them than I used to be and bounce back quicker. There is still much to look forward to every day and much more interesting conversations to have with my family or friends than COPD symptoms.
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Editor's Note: We are heartbroken to share that Carol passed away in February of 2022. Carol's storytelling and advocacy will be deeply missed, but her legacy lives on through her articles and in all the people she inspired.
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