Friday, 30 September 2016

Sleep Works For Me

There are a lot of consistencies in my days, easy exhaustion being the most consistent. I tire very quickly, my energy mostly consumed in basic movements, things like picking stuff up, putting things away, and, or course, transfers. This morning, and last night as well, are terrific examples of how this easy wearing away of body and spirit affects the way I live.

Yesterday I did a couple of errands. I needed to get the arms fixed on my wheelchair, and I needed some milk and fruit from the grocery store. Katherine came along to help as she also had an errand of her own. So at about 1:30 PM we headed out to do these various tasks, with my getting home and settled at about 5:00 PM. I needed a nap, so I transferred into my Phoang chair from Ikea and just rested for a couple of hours before getting myself dinner. After a few hours of TV, I was done and went to bed at about 11:00 PM.

This morning I woke up at 8:30 AM, checked the clock and rolled over, closing my eyes and returning to restfulness. I did the same at 9:30 AM. Then, at 10:30 AM, my home care worker came and helped me get up, not an easy process with this broken foot. With my removable cast removed, I headed to the toilet and shower. Once complete, we did the rest of my morning routine including a full set of arm exercises and a small set of leg exercises on my left leg only.

Once I was done with my exercises, I headed out to the kitchen for coffee and a big bowl of breakfast cereal; I've given into the dark side of late, Frosted Mini-Wheats, the cereal simply acting as a carrier for sugar. By about 12:30, with morning routine, breakfast, and coffee done, I found myself exhausted. I had been up for a mere two hours, but the activity of the morning had been enough to wear me out. I needed a nap.

Just to put in in perspective, I chose napping over writing, something which is happening more and more lately. It is easier to sleep than it is to write. By 1:00 PM I was in bed, ready to sleep. I nodded in and out of slumber until 5:00 PM. This means I have slept about 14 hours since last night. I should be okay for the balance of the evening, right up until 11:00 PM. Then, rinse and repeat.

I am old. I am worn out. I am tired all the time. I am exhausted. This is ALS in action. My only advantage is that sleeping costs nothing, except for rent and utilities. I don't spend money while I sleep. I don't eat groceries while I sleep. I don't consume wine or Scotch while I sleep. It's looking a lot like sleep is a good way to use my time. It's working for me.


  1. So thankful Katherine is willing and able to help you now and then. What a blessing! Sending Oregon love your way! GG

  2. Richard, I have been following you for a while now. I have read every page as als consumed my life. I care about you and worry for you. Especially when you post later than usual. While I don't have als, my younger sister died from it on my birthday. Her spiral was very quick. So I can somewhat understand what you are going through right now. I hope you do what you feel you need to do. You are a marvel to me. You are so opposite who my sister was. I am so grateful you choose to write every day. There is much to learn from and about you! Thank you so very much for helping me through my extremely difficult time. My loss is very painful & some days I wonder how to carry on. Then you post and it comforts me. Thank you so much. Truly.