I'm Still Living With ALS

I'm back home, quickly settling into my normal routine. This morning my HCA was "The Shuffler" as she shall ever be known from this point on. I could also refer to her as the Minimalist, since she does the minimum possible to get past the work. She really is not into patient care all that much. There is food in my fridge, wine in the rack, coffee in the machine, and I am free to spend my day as I wish.

What I wish for most of all, is a return to routine for a couple of weeks. I need routine; it provides a series of safe cornerstones on which I can plant my life. It helps me remember the days of the week, the weeks of the month. Routine is predictable. That's what makes it safe for me. Unfortunately my routine also includes a lot of change, so even within that framework of stability, there is a lot that is unstable, changing in my life. That's why I need to cling all the more to those things which offer me a sense of safety, a feeling of still having life to live.

The last six months have been very difficult for me, moreso emotionally than physically. While I am certainly declining in strength and stamina, I'm not dead yet. Moreover, I'm quite lively, all things considered. However the emotional stuff is the hardest. It began with my UTI in August. Physically that set me back, but it seems to have had a powerful emotional impact.

Then it was the loss of my regular trivia group. The new location had stairs; I could not go. I miss them a lot. I moved to the Cat N Fiddle, and some of the regulars from my old group are there with me on a regular basis. I truly appreciate that. It's more the overall loss that gets to me, that the change in location meant I lost something important to me.

There were a number of smaller events which kind of got to me in the fall, none of which I will go into again. The big one, though, was reaching the three year mark, and reaching the end of my RRSP. All in all, I did pretty well in this. I was supposed to live about three years. My money lasted about three years. It seemed like a good plan. Then I lived longer. The psychological effect of losing the empowering capabilities of money has been difficult for me to get used to. I weighs on me.

Christmas was tough, not seeing my Mom and Ray, not seeing my children and grandchildren. I have second guessed my decision to stay here so many times it is countless. It's also pointless. The decision was made; the day is past. The whole Christmas and New Year's season was a rough ride. But I made it.

So here I am today, working hard to live in the moment, working hard to find new ways to stay social, stay active, stay alive. It takes a lot to live with ALS. But it's still better than dying from it.