Do you ever feel invisible – like someone is looking right through you? Or forgotten – as if you’re not even there?
As a caregiver, this happens often. In a small town where we all know each other people would stop me and ask about Mike. They didn’t ask how I was until I was diagnosed with breast cancer.
Caregiving is hard. I don’t know how many times I heard about my stress levels and that I should lower them. It felt like I was going from one crisis to another. I did not have time to reduce stress. Even before his illness, it seemed like we lived in chaos most of the time. His disease seemed to take that to an elevated level.
I had been following some entrepreneurial paths when I was presented with the opportunity to apply for the Oakley Area Tourism Director. Something where I could use my design and marketing skills. I sent my application on the day Mike was admitted to Hays Medical Center for the first time. Little did I know how much my life would change.
Over the next three years while working full time we were traveling to different clinics to see different doctors. Along with a doctor in Denver we went to the Mayo Clinic in Rochester, MN. One of the doctors at Mayo recommended a rheumatologist at KU Med Center and we landed there with at least three specialists. Then when I thought there was a problem with the diagnosis I searched for the syndrome and found that the doctor who was at the forefront of research in it was at MD Anderson in Houston. My parents had a house about 45 miles from there, so we checked that out.
When I talk about my stress levels being high, I’m talking about scheduling and traveling. In August 2015 I went to St Louis for a tourism event. I’d totaled my employer’s vehicle on the way there and got a ride in an ambulance the rest of the way there. Mike came to get me and on the way home we stopped at KU Med Center so he could have a chest CT because he was having problems that morning. This started a stretch of going to Kansas City every week for the rest of the month. Not great for my back that had been in an accident at the first of the month.
It was in September 2015 when we went to MD Anderson. They told us at KU Med Center that they were having trouble getting a good bone marrow sample for the biopsy and had diagnosed him with MDS/MPN Overlap Syndrome. At MD Anderson they wanted to give him a monthly chemo treatment so we would be going back monthly.
Those monthly trips all had trips to KU Med Center in between where they were taking care of his esophagus. He was finally put on a feeding tube because his esophagus had a hole.
All the while I was working at a job where I had travel to meetings, I was helping with the Kansas State Cornhusking Contest, and I was meeting myself coming and going. I couldn’t remember what I had committed to during our meetings. I had used all my vacation and sick leave. Two of my co-workers had given me over two weeks of their sick leave and I still took some time off without pay. I was stretched almost to the breaking point.
Photo by Kim Beer.
Somehow, I made it through. My self-care was to play bells and sing once a week. When Mike was an inpatient at KU Med Center, I would stay at Roderick’s apartment so I could get away from the hospital for the night and eat something besides cafeteria food. Occasionally I went out with a friend in Kansas City. When we were in Oakley, I would spend time with the horses. This kept me from snapping.
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Don’t let your stress work on you until you are Unwell.
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