Monday, 14 September 2015

I Want To Cry

I want to cry, but I can't. The tears won't come. I go through this a lot, as the cycle of frustration with ALS ebbs and flows. I'm pretty good most of the time, although I constantly fight with the negative feelings and emotions that come from my situation. I take medication to help with the emotions, but even with that they come full on some days, hard and strong, pushing me downwards, backwards.

Often these strong feelings are triggered by an event or significant change. I've seen a lot of change in my upper body strength in the last few days and weeks, especially while my body was fighting infection recently. I was reminded through that battle that things lost, regardless of how you lost them, do not come back when you have ALS. I still suffer from pain in my left knee from when I fell in my boat almost three years ago. Repairs don't happen when your body is spending all its time fighting the illness.

That is what I am dealing with right now, the emotional impact of realizing that I have now become completely unable to lift myself fully and freely out of my wheelchair. No matter how I approach it, my flaccid thighs seem to be gravitationally attached to my wheelchair cushion. Never mind that I can no longer transfer to and from my bed, what I have to do to get off my shower bench is the real story.

When I shower, I sit on my bench. The transfer to the bench is downslope, and mostly works even though I actually slide off my cushion rather than lift off. The transfer from the bench back to the wheelchairs is, however, upslope. This means the cushion prevents me from making the trip. In order to make this transfer, I have to take my flabby thigh and lift it ever so slightly over the edge of the cushion, preventing the combination of cushion and thigh from curling up and blocking my sideways motion.

Of course this movement of my thigh flab also impacts my butt cheek on whichever side is in action. That spread of cheek means I am more likely to hit my more sensitive posterior parts on things like wheelchair bits, or the edge of the shower bench. In other words, I regularly end up with hard pieces of wheelchair shoved into my ass, and not the broad ass area, but the specific, small opening. Even though I use towel to protect me during the passage, it seems to happen regardless, often enough. Aside from the simple pain of it all, it's another humiliation in a humiliated life.

And it makes me want to cry.

1 comment:

  1. Solution is a power wheelchair with seat elevator that can be raised higher than the shower bench so allow a slide down onto the bench and lowered to allow a downward slide from bench to wheelchair. Wheelchairs with seat elevators aren't cheap though.