Yesterday I wrote about needing more and more help to live my daily life. It's true. I do need more help. There are now more things where I need help than there are where I don't need help. However this does not meet I am completely helpless. That will come in time, sooner rather than later. I suspect I have 6 months or so before I lose the use of my arms. After that, the end will come quickly. I do not plan on being tube fed or using a breathing machine.
In the meantime, I do plan on living as much as I can. As much as possible this means independent living, here in my home. It means living within my abilities if I have to, all the while stretching the boundaries of what I can do by changing the ways I do things. Yesterday was a good example of this.
I wanted to go see the Wonder Woman movie, so I posted on Facebook last week asking if anyone wanted to go with me. Jessica, a friend since I first came to Calgary, posted that she had already seen it but would like to see it again. She also suggested that we get dinner before going to the movie. So I said yest to both.
In the past I would have gone in my truck. These days I don't go anywhere in my truck without a helper, not only so I can get in and out, but just in case I get over-tired or somehow my driving becomes compromised. Also, wheeling around parking lots, into and out of buildings, can be very tiring for me. I need a pusher. So both my truck and my manual wheelchair are no longer the tools for this. Instead, I used my power chair and Calgary Transit.
I transferred myself to the power wheelchair, the one provided by the ALS Society, using the lift and sling, also provided by the ALS Society. New tools for new methods. I powered out to the bus stop, took the bus and C-Train to the where we were meeting for dinner and the movie. I left extra time so I could go shopping for a new doorknob for my front door, one of the lever kind. Doorknobs are getting difficult for me. I also picked up a couple of extension cords for my new deck lights.
Today I will install the lever doorknob by myself. If I work slowly but steadily, I can do this from my wheelchair using lightweight household tools. I will also plug the deck lights in to the outdoor outlet on my balcony. Oh, that outlet needs a new cover. I can also likely fix this myself too, although it is a bit low down for me. I bought the outlet cover yesterday as well. We'll have to see if I can do it.
Overall, there are lots of things I still do for myself, lots of things where my abilities are not limited by my illness. I know that will change as time goes one. That's one of the terrible and terrifying things about ALS; you know what's going to happen. You even have an approximate timeline, although you can never be completely sure of timing. That light at the end of the tunnel is a train, 100% of the time.
Nonetheless, you need to keep going, to keep living within your abilities, even pushing them at times. It's worth the exhaustion, the ache, the pain, the trouble. Otherwise you are left with just giving up. I'm really not much for giving up.
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