The Turning Point
In January 2023 I caught COVID from a coworker — and since then my condition has worsened. With our disease, every flare-up makes the condition worse.
My life changed drastically. Living with COPD means constantly experiencing fear of running out of air, choking, stress, lack of concentration and thoughts about the future that race and prevent me from focusing. Waking up at night afraid of choking, and the noise from the oxygen concentrator disturbs my sleep. Fatigue became part of my daily life.
"I'm quite isolated — afraid of getting infected again, I don't have the strength to host like I used to, and I'm afraid to be alone with a young grandchild."
The Medical Journey
The doctors don't really know how to handle the disease and try new medications and different treatments, but none of them helped. One doctor thought I had pulmonary hypertension and prescribed medications — but further tests showed that wasn't true. I was also given medications that "prevented" complications, but every morning I'd wake up with heavy cough and every month I'd experience another flare-up. Eventually I decided to stop these medications on my own — good or not? Time will tell.
Pulmonary rehabilitation didn't work for me — at the last training session my heart rate jumped above 160 and the staff didn't notice. I learned hydroptherapy exercises that I do myself at home.
There is no cure for COPD — it's an irreversible mechanism. The only thing that can be done is to ease and perhaps prevent the edge of deterioration. It's important to understand and accept: what was will not be again.
Daily Life
I have to think twice before every outing — will there be somewhere to charge my oxygen concentrator? Will I be able to breathe?
I start walking slowly, taking deep breaths — as much as possible. The distances I can walk get shorter. Wait... air... hold on, breathe — it will come in, it has to! Connect to oxygen? Manage without it? Every outing becomes a project.
It's hard for me to do simple things — lift objects, unload the dishwasher, hang laundry, go shopping without accompanying. I look completely "normal." As one of the nurses said when she saw my oxygen level drop: "You don't look it." And I'm glad for that.
What Hurts Most
What hurts most is that I can't play and have fun with my grandchildren the way I love to. I'm quite isolated — afraid of getting infected again, I don't have the strength to host like I used to, and I'm afraid to be alone with a young grandchild.
People don't really understand what it means to have no air — it's elementary and so obvious. Except it's not.
The worsening of the disease affects every area of my life and makes me feel helpless. I feel like I'm losing my freedom to be the grandmother, mother and partner I was and want to be.
"This is what it is — and we will overcome it!"
— Toy
