THE ODDS (Debbie Does ALS)


Weighting for Godot

My blanket is putting on weight.

In order to move my arms when they are under the blanket, I have  to slide rather than lift them. And I've already complained about the weight of the blanket on my feet -- at times it is actually painful. Some time ago I came across a hint  to help alleviate this problem, something like a tent configuration so the feet are not so constricted. The challenge here is practical application; I'll have to give this some thought.

I had a pleasant conversation yesterday with the Business Care Representative for my company's mobile phone account. He is a very nice young man (I do seem to know quite a number of nice young men, don't I?) and asked after my health. He said he hoped I would continue to progress slowly, and I thanked him.

It got me thinking about slow progression and whether it is all that great.  Initially, yes, it is.  When the only changes you notice include a slower running pace and clumsier handwriting, quality of life is not impacted overmuch. Travel, work, regular day-to-day activities go on pretty much as before; you make little adjustments along the way to accommodate the new challenges that present themselves.  One day, however, you realize that you've made a lot of little adjustments and, while you are still "slow," your quality of life is far more impacted.  What independence remains is clung to desperately until you finally admit defeat and ask for yet more help.

Right now I exist in-between.  I don't like it.  I certainly don't want my progression to speed up, but the slow erosion of my ability to perform even the simplest function is no picnic.


Mykljak said...

McGee's Sour Grape Vineyard and Whinery now open for tours and pity parties.

Five Percent said...

Ouch. I do sound a tad pitiful, don't I?

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