Feeling Good, Feeling Well

There is a substantial difference between feeling good and feeling well. I am feeling pretty good today, after some tears of relief and realization when I went to be last night. I am immeasurably relieved to be home, yet coming home forces upon me the realization that ALS has taken substantially from me over the last month. So while I may be feeling good, I am, by no stretch of the imagination, feeling well.

It is kind of a tragedy on its own, that I can feel good within my body, yet my arms have reached the point where neither of them can bear any weight when lifted above my head. I am okay for picking things up, but no longer can I bend over in order to reach them; I have to use a grabby stick. I can no longer suspend them in the air for any amount of time, especially when the reach is upward. I can't get things from the first shelf now, let alone the second. Wheeling myself in my manual chair has become a slow and tiring process. An empty coffee cup is too much for me to put in the cupboard.

Much of this change has taken place over the last month, most of which I've spent in hospital. Being flat on my back has meant little exercise or movement of my arms. As I have said before, with ALS, no matter how you lose it, if you lose it you're not getting it back. However, I suspect in this case loss would have occurred whether or not I was in hospital. At home I just would have been more aware of the incremental change.

I think the real awakening to this recent set of changes has come to me in two specific instances. First, I am consistently biting my tongue and inside lip on the left side. This is no longer an occasional occurence; I now have a semi-permanent rip on my lip, and I can actually feel the loss of strength on the left side of my tongue. Second, today in the shower I was able to take my shampoo bottle down from the corner shelf, just above my head. It's at a height for "normal usage". When I went to put it back, I could not reach it up. I had to slide the shampoo bottle over the edge of the shelf and then tip it upwards.

So, while I feel pretty good, I am not feeling all that well. I am happy, but still very sad about what is happening to my body. I am getting out in my power wheelchair, but I am more limited than ever when it comes to mobility. That's the difference between feeling good, and feeling well.