Thursday, 11 August 2016

I Stayed In Bed All Day

It's almost 11:00 PM here in Calgary, but it is still Thursday so I am confident that this constitutes my Thursday blog entry. If you are interested, this is blog entry #1352. I've most certainly beat Ann of a Thousand Days. I just got out of bed a few minutes ago, the first time I've gotten out of bed today. I stayed in bed all day.

It started out like any other day. I woke up near noon after my requisite 10 to 12 hours of sleep. As I sat up I said to myself, "I don't want to do this." And this time, I didn't. For the first time since the beginning of all this nonsense, I gave it to the feeling that getting out of bed was just too hard, too much to do. I fell back down and closed my eyes. I thought about things. I had no plans for today. Nobody was coming to visit, no guests for dinner. There were no wine making tasks, no shopping needs, no social engagements. There was nothing in my day. So I stayed in bed.

After a while, I thought again about getting up, yet still that exhaustion was upon me. I had slept more, longer, and still I was tired. Of course this is normal with ALS. I am constantly tired. The exhaustion of this illness means I am never refreshed, never "not tired". So again, I just stayed in bed. Nothing changed. Nothing happened.

As the day wore on, the sun rose high and worked its way across to the western horizon. The city crew worked on paving the street out front of my apartment. Buses came and went, engorging and disgorging as they do. Every once in a while the departing passengers would be loud, shouting, laughing, living their lives as they went. The traffic rose in noise and volume, then slowly, as the sun setting in the west, quieted again, settling into peace, only the odd bus making the rain squish beneath its tires.

The world went on while I lay in my pseudo-death, drifting in from sleep to awakeness, moving from slumber to alert, every few hours taking a sip of water or going pee in my jug. I checked Facebook now and again, texted my daughter to move our Skype appointment to tomorrow from today, read the news on my phone. I had all I needed. I was not hungry, in fact I am still not hungry. Apparently not moving out of bed all day is a good appetite suppressant. It seems backwards, but everything about this bloody disease is backwards. Perhaps it's because I am rarely truly hungry, and surprised when that happens.

Finally, a few minutes ago, the two most persistent things in my life convinced me to get out of bed, at least for a while. I have to use the toilet. It's not urgent. I could just leave it until the morning, but urgent events in the middle of the night usually turn out badly for me. I could trust a Zopiclone to shut down my bowels, but not completely. Caution is the watchword here. Secondly, I wanted to write in my blog for today, for post number 1352.

Even now, even this getting out of bed, I am tired, ready to go back. I had no other reasons for getting up. This is it. Going to the toilet, and writing in my blog; it's a hell of a life.


  1. Thanks for posting... I start checking for your blog around 11 am each day. Hope your Friday
    Brings some relief.

    1. No worries. To quote the "dead" man in Monty Python's Search For The Holy Grail; "I'm not dead yet."

  2. Do you think getting back together with Katherine would in any way lift your spirit? You are a very brave man!

  3. I think the opposite. Katherine is a vital friend, but Richard must not look at himself as Richard minus Katherine; that's not fair to Katherine, either. We are all gifted to be here. Embrace the day, value nature and the abilities you do have. Being able to call up your kids at any time or see your grandchildren are part of the gifts.