My New Normal with COPD

Since my diagnosis, I have found new interests and connections, and you can too.

Before my diagnosis with COPD, I was physically active by speed walking, dancing, and skating. Living in NYC, then moving across the Hudson, I didn’t own a car and was a veteran subway and public transportation rider. NYC public transit rush hours are best navigated at a fast pace. Speed walking served me well. As time passed, these activities became unmanageable because I struggled to breathe. As you may have guessed, these activities were put to rest. Though, I still dance a little.

When I was first diagnosed with COPD, I knew nothing about how to alleviate shortness of breath other than using a rescue inhaler. It wasn’t until I wound up hospitalized for 4 days with a severe COPD exacerbation that I began to do some searching online for info. I also attempted to pick the brains of many doctors, nurse practitioners, and nurses in my extended family.

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Collecting COPD information

The information I received served me well. I learned about breathing techniques, exercise, pulmonary rehab, what COPD is, what happens to the lungs, oxygen saturation, and exertion tolerance.

Pulmonary rehabilitation was the key to keeping me from having exacerbations, along with my maintenance medication. It has also been 2 years since I required treatment for an exacerbation, even at home.

Yet, something was missing. The patient’s voice was absent. Nowhere did I see a true description of severe shortness of breath, as only someone who chronically experiences it can describe it. I only found it when I looked at advocacy and support groups.

Getting involved in advocacy and support groups

I also looked for organizations and foundations centered on lung disease. The American Lung Association and a further search led to the COPD Foundation, Right2Breathe Foundation, the Pulmonary Wellness Foundation, and Better Breathers Clubs. These offer free education, support, and tips from respiratory therapists, doctors, and patients. I read these materials for approximately 1 year before interacting with other patients and respiratory therapists. 

Through these organizations, I have found support, friendship, and advocacy. I have been involved in numerous projects with the COPD Foundation and the American Thoracic Society. I’ve also been the representative of the COPD community voice for the patient perspective of proposed new treatments like pulmonary rehabilitation, guidelines, virtual monitoring, and ways to engage patients in educational promotions like inhaler education.   

Exploring new hobbies

As you can imagine, this keeps me busy. I love to have fun as well. I love socializing and engaging in activities that bring me peace and joy.

I am an avid bird-watcher, and in the spring of 2020, I began playing around with a great camera that a friend gifted me. She asked that I use it to share my views and vision. It wasn’t easy for me at first. I always felt I took horrible photos and could never improve. But out of my respect for my friend who passed, I kept trying.

I first began to practice taking photos of birds from my window, looking out toward the backyard at the beautiful old ash tree, home to a family of gray squirrels and numerous finches, sparrows, etc. A red-tailed hawk was resting there early one morning, though I couldn’t capture it with my camera. I took photos of a red-tailed hawk family who lived in my local park much later.

Since that first spring day in 2020, when I ventured out to the park with my Nikon, I have greatly improved. The most surprising thing about photography is that it requires a sense of calm and patience, which may seem very counterintuitive when you hear a bird call and try to capture the perfect shot before the bird flies away. Mindfulness and meditation are helpful to me.

Practicing mindfulness

I have been meditating and practicing mindfulness for years. I can quickly become stressed and flustered with a busy calendar, a partner, three kitties, family friends, and speaking engagements looming ahead while dealing with my COPD. I always make sure I have time to read and write, even just a few lines each day. Reading has always brought joy. Writing is a mental and emotional boost.

Setting appointments and medication reminders

Many of us living with COPD are of a certain age and retired. Oftentimes, days seem to meld into others. Writing appointments into a calendar can work for some. It was hard for me to remember to look at the calendar. My solution has been to add appointments to my digital calendar and have my phone alert me via alarm and email. I use this to remind me to take medications as well.

Accepting the reality of COPD limitations

Not all of us with COPD can be out and about for significant periods of time for various reasons, like a lack of portability of our oxygen, an inability to conquer dyspnea, or other factors. What would you enjoy if you could get outdoors, weather and other factors permitting? Gardening, bird-watching, photography, or just a relaxing, mindful walk?

Reading books, watching films, and communicating with friends and other patients in online forums and web chats can make managing a life with COPD easier and more enjoyable. I encourage you to find those things you enjoy and live your best life with COPD.

Everything I have described here, from pulmonary rehab to advocacy to support groups and foundations, speaking engagements, meditation, mindfulness, and photography, has allowed me to have a wonderful quality of life while managing a chronic illness.