a nervous woman timidly places her foot out the front door, exiting her indoor comfort zone

COPD and a Life of Uncertainty

Last updated: September 2022

There are a great deal of uncertainties living with COPD. Regardless of how meticulous I am about scheduling my daily life to accommodate having this disease, it can rear its ugly head at any given moment and alter all my well thought out plans.

My house is a safe haven

Within my home, I have created a bubble for myself. It is my safe haven. Everything is strategically placed to accommodate my life with COPD. I have two oxygen concentrators, located on each end of the house. This is so I don’t have the frustration of long tubing that tangles. I have an exercise area permanently set up so I only have to go to that corner and start my routine at any time of the day.

My shower has a chair and a handheld hose for easy bathing. Another chair in front of the washer and dryer and laundry basket on wheels makes this an easier chore. Belongings have been minimized to make cleaning easier. I have my hobby area and my sacred space for meditation. A great deal of my shopping is done online. When I do go out, I want to do fun activities, not shop. All my bills are paid online.

Living with uncertainty

The uncertainty of living with shortness of breath creates a fear that is part of daily life. It may not be thought about continually, but it is there subconsciously. I may have created a home that allows me comfort with my disease, but at times I feel I have created a false sense of security.

When I go out, I have the anxiety of leaving my comfort zone. Even if I am familiar with the place I am going to, there is still a certain amount of trepidation.

My husband is my caretaker. When I feel well, I can maintain our home and cook. I no longer drive, so he is the family chauffeur. During an exacerbation, he does it all. He will also help out on days when breathing isn’t so great, such as bad weather days. I get tired and more short of breath at dinner time. If I ask, he will help. I try to do as much as I can on my own. The uncertainty of “what if something happened to him” is always with me. How would I take care of myself if he passed before I did?

Planning a future

Some of these thoughts may seem morbid, but I feel they have to be addressed. If not, the constant uncertainty will create a lot of anxiety issues. As we get older, we all have to face our own mortality including our spouse, or possibly another caretaker. These are difficult questions to have. If you cannot live on your own, where will you live? Who will help take care of you? What preparations have you made? We don’t think twice about having a life insurance policy, many times purchased when we first get married. With a chronic illness, I feel I have to go beyond that. My life insurance can’t be just financial.

There are no guarantees in life, even for the healthy. For myself, with Stage 4 COPD, I feel it is a must to have some sort of future plan. It will be different for each person based on finances, location, family, and health. There are still things I can do to make myself less dependent. Leaving my home with less anxiety and driving again are two things I am working on. I work at keeping myself as healthy as possible. I can’t plan for everything. None of us can. Life has a way of throwing us curve balls. I breathe just a little easier though, knowing I have provided some answers to life’s uncertainties.

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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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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