Finding Hope When You Can't Breathe
COPD can make a person feel hopeless for the future. When you are short of breath, there is nothing else on your mind but getting air. This article is about my own story, starting with life after a two-month hospital stay. Although I’ve written about it briefly before, this is more in-depth. By doing so, I hope to share that a COPD diagnosis is not the end of the world, nor is a severe COPD diagnosis. There is life and there is hope.
During my first couple of weeks home, I was terrified to be alone. This was unusual for my husband. He was used to me being pretty self-sufficient. He was in the middle of a job with a deadline and couldn’t stay home. Friends took turns staying with me until he got home. This was new, even to me. I couldn’t explain my fears. I couldn’t walk without using a walker. My muscles were weak from being bedridden for so long. I tried putting on a brave face, but I was terrified.
Within a couple of weeks, I stopped using the walker, more out of frustration than any other reason. It was easier to hold on to furniture or walls as I made my way through the house. For weeks I sat staring out the window, unsure of everything. Thankfully it was now the beginning of summer. Sunshine and warm weather is some of the best medicine!
That first year was the most difficult time I have experienced. I didn’t know if I would ever breathe again. My body was still weak. Each morning I opened my eyes, dreading the day ahead and the work it took to breathe. My husband was doing the shopping, cooking, and cleaning. These were supposed to be my responsibilities. Friends stopped calling and were moving on with their busy lives. It just added to the guilt I felt for allowing my health to get to this point. How many times was I told to quit smoking? Suicide crossed my mind a few times. I couldn’t imagine life as it was. I pushed the thoughts back, ashamed at myself for thinking it.
I didn’t understand why I wasn’t getting better. With every exacerbation before, I came back from it. I wasn’t smoking anymore so I should be better than before. Everyone said I would feel good and breathe good if I quit smoking.
I began looking for answers. Reading everything I could find about COPD, I filled a notebook with information. Blogs were my favorite because they were written by people with COPD. I found a blog post about reaching a tipping point. I had always bounced back after an illness. However, each time my lung capacity became less, and I learned ways to deal with that. It was easier to shop leaning on a cart. I took more breaks to catch my breath and avoided activities that made me breathless. The infection that put me on a ventilator and into a coma was my tipping point. My lung function was so weakened there would be no going back to “before”. This new information should have left me feeling more hopeless, but it didn’t. Instead, it gave me the answer I had been searching for.
Around the same time, my doctor felt I was now strong enough to attend pulmonary rehab. I thought he was a little crazy but I was willing to try it. How was I supposed to exercise and breathe? Going to that first session filled me with anxiety and fear for days in advance. I did a full minute on the treadmill and another minute on the bike. By the time my husband picked me up, I thought I could walk on water! I went three times per week for twenty-one weeks. Two minutes of exercise became forty minutes each session. I was beginning to believe there might be some sort of life for me after all.
It has been six and a half years since that day I went into respiratory failure in the ambulance. I have been to pulmonary rehab twice. I have taken a trip with my husband by car from Massachusetts to Texas to visit my son and family. We are currently saving for a small camper to do the trip again, along with a few others. I have only been hospitalized once in this time and it was briefly, caused by spring allergies. I have had a few colds but bounced back within a week. Instead of being on four liters of oxygen, it is now two, none when resting.
I won’t claim life is a bed of roses every day. Managing this disease takes work and determination. There are lazy days and sad days. There are days I want to hide under the blankets because I get tired of fighting a disease. I saw a quote the other day that describes it best. “If you are going to walk through Hell, walk as if you own it.” There can be a happy life after a COPD diagnosis. You have to work for it, but there is hope. Please don't give up.
Do you have any tips on how you dealt with your life-changing from COPD?
Do you have questions about your COPD diagnosis?