Saturday, 22 October 2016

Forcing The Toothpaste

It might be time for another toilet tale. These are almost always funny, and if not funny they certainly present a real view of what it is like to deal with ALS, the wheelchair, and life in general. So...

Yesterday my HCA, Micheal, did his usual job of helping me with my morning routine then taking me through my Range of Motion exercises. His last tasks were to make my bed, pull the blinds down, and re-attach the sling to my lift. My bed got made. The reason he forgot the other two is that they are new to the routine, and he was already 20 minutes late. I had taken a long time in the toilet and shower.

This morning, when I finally decided I had the strength to get out of bed, I saw that the commode chair was in its usual place, across the room beside my closet doors. However there was nobody to get it for me. In order to use the commode chair, I would have to transfer to my wheelchair, move the commode chair to where I could reach it, transfer back onto the bed, then transfer onto the commode chair.

I would have used the sling but it too was across the room, Micheal having forgotten to attach it to the lift system. I am guilty here too. I could have attached it myself, but I also forgot and went to bed without it. Mea culpa. So I decided to try doing the transfer to and from the toilet, using my bidet seat and regular toilet rather than the commode chair.

So off to the bathroom I rolled, confident in my ability to fulfill this task. Alas I was to discover that, as usual, getting on to the toilet was doable, but getting back getting back to my wheelchair had become pretty much impossible. I was able to get myself halfway onto the chair, holding myself in place by leaning way back, spreading my body across the chair and back to ensure I did not slide to the floor. In this manner and position, I rolled back into my bedroom and, with numerous challenges and skidmarks, managed to drag myself onto my bed.

After all of this excitement I was exhausted. I needed a rest. So I stopped for a bit and wondered to myself why I even bother with all of this. Why can't I just let it go? Of course, I can't, It's not in my nature to stop trying. So, having rested, I dressed and finally got on with my day.

Lessons learned? No more toilet, no matter what the circumstances. Use the sling, and if it is not set up, set it up. Quit trying to prove to myself that I can do what I used to do. Get used to the idea that I have ALS, that I am getting weaker, and that my life has been changed permanently. I cannot force this toothpaste back into the tube.


  1. Oh gosh, thanks for this post!! I've just had to give up driving, and I waste time trying to think of a way I can still do it instead of just accepting it and using time doing what I CAN still do. Sometimes even a little guilt for "not trying harder"gets into the mix. Sure can relate, thanks as always!!

    1. That guilt is there for me too. Just like you, I think I should be trying harder, forcing my body to do what it used to do. But then it doesn't. Toothpaste, you can't do anything about it once it's out of the tube.