Sunday, February 10, 2008

More on living with a spouse with M.D.

We really wondered what our life was going to be like when Sheila was diagnosed with Polymyositis. We already knew from the year before that it would mean many doctors and many hospital visits. We would travel hundreds of miles to Rochester, Mn. and the Mayo clinic. We would become familiar and aquainted with the motel staff near the clinic. We knew all the coffee shops and the best and worst places to eat. Perhaps... we were a little too familiar.
For those of you wondering, "Polymyositis is a nuero-muscular disease that normally effects woman between 21 and 25 years of age. It is one of a group of muscle diseases that involve inflammation of the muscles or associated tissues; the inflammatory cells of the immune system directly attack muscle fibers.
The cause is unclear; researchers suspect viruses or exposure to certain drugs might trigger the misdirected immune response. The symptoms are weakness of the muscles of the hips, thighs, upper arms, top part of the back, shoulders and muscles that move the neck; pain or tenderness in affected areas; possible heart, respiratory and swallowing problems."
Sheila experienced all of them. Her heart weakened over the years from the disease and the effects of the medications she had to be on to live. She was in and out of the wheelchair, sometimes out for 3 or 4 years. She had the strength and heart of the greatest warrior and never complained about her condition. She told me once that all she wanted to do was to have the ability to take care of her husband and her daughters. She did both with beauty and the greatest of love.
How were we effected by the things she dealt with daily? We began looking for places that were easy access. This all started before the push to make all public establishments accessible for the disabled. And believe me, there were a LOT of places that were NOT. We found that many places were not even interested in changing things until it was law. part of living with the disease was being respectful with love to Sheila. Understaqnding that if i wanted to go somewhere and we found that we could not get in, it hurt her because she felt she was depriving me or the girls of something we wanted. So we searched and found all the places we Could get into.
Dignity was another very important part of life with Polymyositis. Sheila was often dependant on me for showers and bathroom and dressing. Finding a way to allow her to feel as if what we did was as natural as breathing. And it did become that and was simply a way of life for us. We laughed at the learning new things and the best ways to do them. I made a few mistakes but learned from them right away. I found the ways to show her I didnt mind doing anything for her. I showed her that our love could and would withstand anything. She became comfortable and our lives became as they were, without any questions or regrets.
We learned the best ways to get in a vehicle and the easiest ways to get in and out of a house. We learned to LIVE with Polymyositis. Because if you choose, there is always a way to Live.

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