A combination of two things is presenting a challenge.
Through all of this, a very helpful coping strategy has been engrossing oneself in the task of clever strategies to continuing doing what you want to do, being a regular and resourceful person. These strategies are better when they are your own. More personal, more satisfying and truly better.
Challenge one: My arms and core are getting weak to a point where it is difficult to do much for myself. Clever strategies are not so appealing when you run out of them. I rely on Mary for most everything now. What a wonderful person.
Challenge two: An introduction to medical problems. Outside of ALS, I have been a model of health. It’s funny how that sticks in your head, even when sitting in an electric wheelchair. Yesterday, I spent the day in the ER with a swollen leg and a fever due to a large blood clot. This was surely due to my lack of movement. A life built around medical intervention, and waiting for others to do things for you, is not a life that I find appealing. When being discharged, the nurse told me “no sitting for extended periods of time”. Hmmm.
This post makes me feel very frustrated for you, and then at the end you get me to spit out my tea, laughing. Somebody out there, please find a cure – pronto.
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