Dear Journal (October 2020)
I wish people could understand what it is really like to live every day struggling for breath. Just because I look good to you today (I get tired of hearing that), doesn’t mean I am okay. Just because when you come to visit and I seem fine sitting and talking, doesn’t mean I’m not struggling for air when I get up to use the bathroom. I hide it well. Maybe I shouldn’t hide it, but I don’t want anyone feeling sorry for me.
My house may look neat and tidy when someone visits, but they don’t know the effort it takes to keep it that way. I remember when I worked all week, then cleaned the house and did all our laundry in one day. Now it takes all day just to clean one room. I don’t know what is more tiring, cleaning, or the constant breaks to catch my breath.
Life comes full circle
The sun is shining. It is a beautiful day out. I miss going out to lunch on a whim. Nothing is sporadic anymore. This is the type of day a walk through some farmer’s markets and lunch by the ocean would be hastily planned by three or four of us. Life really does come full circle. When babies are little, taking them out would require so much stuff, the stroller, the bag filled with supplies. Now it is me. I need my walker. My bag is filled with a bottle of water, tissues because the oxygen makes me have to blow my nose, an extra cannula just in case, lozenges in case I get that embarrassing cough, a rescue inhaler, and of course, the dreaded oxygen. A sense of humor seems to be a prerequisite. It is the only way to get through it.
I can't always keep up
I often wonder what happened to all my friends. How did they slowly slip away? Are they tired of my cancellations? I can’t make definite plans. What will the weather be like? Will it affect how well I can breathe? Taking me out is a project with oxygen. I can’t always keep up. I have to stop and rest for a moment. Am I assuming these are the reasons or maybe I haven’t really talked to them about it? I think I’ll invite them here. I can have something delivered. They don’t really know how I feel unless I talk to them. I’m sure we can find new things to do that will include this new lifestyle of mine!
The weather and breathing
Ugh! A day of heavy breathing is in-store today. It is raining out and humidity is high. These types of days make me feel like I’m dragging a ten-pound weight behind me. There won’t be much getting done today. Maybe I will finally clean out that junk drawer in the kitchen. I can do that sitting and there is a casserole frozen in the freezer. No cooking!
I had no idea that the weather had such an effect on breathing. I guess that is the most misunderstood thing about COPD. I was guilty of it myself. It isn’t just shortness of breath. It is the triggers that set it off. It is so different from person to person. It is the bloat from eating a little too much. How I miss some of my favorite foods without worrying about what they might do. I miss cooking that food. I get too out of breath to do all that work now.
If people only knew the amount of planning it takes to get through the day to try and live normally. What I think I miss the most is a day of no worrying. Subconsciously, it is always there. Will I have an exacerbation? Can I make it from here to there without being short of breath? If I take that extra bite of food will I feel bloated? What will I feel like when I wake up?
I am going to be just fine
It is another day with this disease. I am learning to manage it. I know I will have good moments and some not so good moments. I have to accept that. It has taken some time to figure it all out. I have learned how to breathe. I know what to do. I keep telling myself that when I feel panicked. I think I am going to be just fine!
Life with COPD can be a roller coaster of emotions and managing symptoms. How do you deal with it on a daily basis? Do you journal?
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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