Monday, 20 March 2017

Made Weary By Work, Just A Little Work

My jaws are tired from chewing, from eating a couple of sandwiches. My Home Care Aide made me these terrific sandwiches, and it is real work to actually eat them. I did it; never let it be said that I give up easy, especially when it comes to really great food. Yet it took real, focused effort towards the end of eating them, effort to life the sandwich, effort to chew, effort to swallow.

This is not true bulbar ALS. It is the generalized exhaustion of ALS. I am not too weak to eat. Eating makes me tired, that's all. There is perhaps a bit more to it that I should explain. Last night I put out a call to my friends for someone to come and help me make a ramp for getting me into my truck. My friend Ryan offered to make it. He came today to get things going.

In preparation for his arrival, my HCA made sandwiches, theoretically a part of meal preparation for me. Trust me, she can whip up a pretty good sandwich in almost no time. So she did. When Ryan got here, we each had a sandwich and a coffee before starting work. We did some measurements of my wheelchair. We went down to the truck and did some measurements there. We went into the storage room for saw horses. We got tools down from the spare room shelf. Then we stopped for more sandwiches and some water.

That's when the exhaustion set in for me. Actually it set in as we were going through the storage locker, but I held it at bay until we got upstairs. Ryan looked at me at that point and said he was going to take the tools and drawings home. He would work on it there, bringing it back tomorrow when he was done building. It's a much more realistic approach given that I need a nap after 20 minutes of effort on something.

My lack of endurance at any heavy physical task is frightening. Light work, especially something like driving, can make me weary after a couple of hours. Heavy work, like lifting and wheeling about, can wear me out in a matter of minutes. It's just so unfair.

1 comment:

  1. Hello Richard, Thank you for sharing your experience. I am in the process of getting a second opinion for ALS, but am quite sure I have it. My left leg is almost shot and I am getting increasing fasciculations on my right leg and both arms. I recently graduated from a cane to a walker, and just bought a wheelchair this week.

    I recently went to Iceland for a week with my nephew, and while we had a great time, I had to make many adjustments to my expectations about what I could and couldn't do. Seven months ago, I was in Botswana with the Peace Corps, walking everywhere, and keeping up with m 25-year-old Colleagues. Prior to the Peace Corps I lived in Portland Oregon and didn't even own a car because I biked everywhere. Now, I am exhausted after a couple of hours of going somewhere in a car and walking into a restaurant or shop. Today, I am lying low after several days with small outings; a year ago, I was working full-time, volunteering, gardening, bike riding and taking yoga classes.

    Thanks for being here--it helps to read your blog and to see my current life reflected while I am adjusting to this new reality.