I'm Not Exaggerating

As my level of dependency increases, it becomes increasingly difficult for those who don't see me daily, or near daily, to understand what is happening to me. Worse than that, I find it increasingly difficult to communicate these difficulties in a way that makes sense. It's easier to describe a significant issue, people can relate to it. But how do you describe a dozen small issues that combine to block your way?

I've known for a long time that for an issue to go badly wrong, there had to have been a series of smaller issues, unimportant issues, which lead there. In and of themselves, each of these smaller issues would seem insignificant. Yet when placed in a row, collectively they provide the basis for disaster, or perhaps just big time problems.

There is an old adage which describes this problem well. "For the want of a nail, the shoe was lost. For the want of a shoe, the horse was lost. For the want of the horse, the rider was lost. For the want of a rider, the battle was lost. For the want of the battle, a kingdom was lost. All for the want of a nail."

For me, it goes like this. My right arm is my dominant arm. That means my muscles in that arm work harder than the left arm. As such I have an almost permanent muscle tear in my right arm, even though my arm is still somewhat usable. That weakness and tear in my right arm means I can no longer pull myself while attempting to roll over in bed. My breathing has ever so slightly weakened. Not so much as you would notice it, but enough that it makes sleeping on my back uncomfortable. No worries, I don't like to sleep on my back anyways.

So I am compelled to sleep on my left side, and only my left side. This constant placement of my hip along with the lack of muscle mass in my buttocks means extra pressure on that one point of my body. That extra pressure means pressure sores on the point where hip meets limited muscle meets bed meets skin. Those pressure sores turn into full on bed sores.

Now lets go the extra step. Let's say a bed sore develops, as expected. I will have to be positioned differently each night until the sore clears up. But I have the same issues on the other side, so there is potential for another bed sore. Now let's talk about infection, something which happens to me easily. An infection, especially a serious one, would put me in the hospital. In fact it would be potentially fatal.

So now, because my right arm hurts, well, you can fill in the blank. Some of you will dismiss this as exaggeration, a highly unlikely scenario. Except that it has already happened to others, be they pALS or bedridden for some other reason. So when I complain about what you think is some minor thing, it's not minor. nor does it stand alone. There are lots of little things happening. They all add up to something big.