Feet resting on the edge of a bubble-filled bathtub.

The Problem: Showering or Bathing

Before my diagnosis, the thing I loved to do most was take a hot bath. After the kids were in bed and the house was quiet, I would light my scented candles, dim the bathroom lights, and sometimes add music and a glass of wine for ambiance.

Those were great days. I was young and strong, and able-bodied.

Taking a shower is difficult

I still have a tough time taking showers. I’m short of breath from when I start my shower to when I finish.

It is anxiety-provoking, and I often must have a short rest after I am done. Laying on my bed with my BiPap on helps to calm my breath and helps me regain my 02 levels and get back to normal.

Showering is getting harder and harder to do.

During a hospital stay in 2021, the doctor thought I could use some help at home and ordered home care for me. But it was not to be because although I qualified, there was just no staff to help me.

Covid sent everyone running, and now nobody wants to do that work. So that means no help for me. My husband is a great help, and I could not imagine how I would manage without him.

Changing up my bathing routine

It took a few days, I thought about it long and hard, and I decided to take the plunge and have a bath. I talked myself into it, as I always did in the past.

Finally, I just did it. I drew the bath and put a bit of soap in the water. Not enough to make bubbles, but it was a scent I could tolerate.

I ensured my husband knew what I was doing and that he was on standby just in case I needed him.

My brain and I are constantly battling it out. It is constant.

I play this back and forth of do it, don’t do it thing. I try to focus on what a positive outcome would look like.

I spend time thinking of how great it will feel to be immersed in warm water, to lean back and meditate while letting thoughts come and go.

Sometimes I would stay in so long that adding more hot water was necessary. I intended to stay in the bath that long this time.

Letting my mind get the best of me

It just didn't matter how well prepared I was for this bath. No matter how much I talked myself into it, my brain won again.

The minute I sat in the bath, my brain said, “This is nice. How are you getting out of this bathtub?” That was all it took to ruin my bath.

I began to panic about how I would get out; before I knew it, I had to get out immediately. I had no real plan on what to do if I began to panic.

Editor’s Note: We are extremely saddened to say that on January 7th, 2024, Barbara Moore passed away. Barbara’s advocacy efforts and writing continue to reach many. She will be deeply missed.

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