Pain And Exhaustion

I wonder how long I can keep it up, this facade of courage and humour in the face of ALS. There is no other way to put it; this is a horrible disease, I am suffering greatly. Sure, I don't have it as bad as some, yet the other day I found myself wishing I was my neighbour lady down the hall. She has terminal and inoperable lung cancer. She is declining quickly. She will die within a matter of days or weeks. Her suffering will end soon. Mine will not.

It is not just the pain I am going through each day. It is the weakness, the exhaustion, the loss of ability, the indignity of care. There are so many things, both physical and psychological that make living with ALS indecent, something I dearly wish would come to an end, yet am too much of a coward to end it myself. I did not cancel MAID plans so much because I wanted to live yet; it was more because I am afraid of dying. I don't want to die; I don't want to live like this.

Today I went for x-rays and ultrasounds on both shoulders. There is nothing holding your shoulder in place but the muscles and tendons surrounding it. My muscles are very weak, so the shoulder joint is quite literally separating on my each time I use it, especially on the left side, with the right side quickly catching up. Imagine the pain of dislocating your shoulder joint every time you moved it. I'm living on T-3's with codeine these days and asking for something stronger.

This activity, this simple hour of sitting, moving slightly, waiting for pictures to be taken, left me so tired I had to come home to have a two hour nap. Even so I am still tired; I could still sleep, perhaps from now right through until tomorrow. I have done it before. I might even ask my caregiver to put me to bed when she gets here at 6:00 PM.

How tired am I? So tired I don't want to eat the steak I have on the stove, let alone cook it. So tired I don't want to make the Shrimp Ceasar Salad for which I have safe, e-coli free supplies in the fridge. So tired I don't have the energy to even cry, let alone raise myself to feel distress. My brother once said that suffering was part of life, but misery is optional. I'm not so sure anymore.