Monday, 8 May 2017

36 Hours In Bed

I didn't write yesterday. The reason is very simple. I didn't get out of bed yesterday. I stayed in bed from Saturday night until Monday morning, spending most of my time sleeping. It wasn't a planned event. I went to bed on Saturday, after an evening of looking at pictures, reminiscing with myself, and drinking Gin and Tonic; it was about midnight when I went off to try and sleep. I took my pills, including a Zopiclone, but it was slow cutting in, so I think I finally slept sometime around 2:00 AM.

At 10:00 AM my HCA came, the one who fills in when Micheal or Kathy can't be here. She arrived early, about a half hour early, not that it mattered a great deal. When she came in, I found myself having great difficulty shaking off the grogginess of the Zopiclone. It happens sometimes. So I told her I just wanted to sleep. She went about tidying up things and making me a sandwich, leaving it wrapped on the dining table. Then she left.

The next thing I knew, it was 3:00 PM in the afternoon, and I was still sleepy.  I didn't fight it. I just lay back down and went to sleep. From then, I would wake up intermittently, needing my jug. There was no other biological urge. So I slept some more, until at about 6:00 PM I woke up enough to think about what I was doing. At that point I said "to hell with it", and decided to stay in bed for the rest of the evening and right through until this morning.

It's been an interesting experience, spending 36 hours in bed doing nothing but sleeping on and off. First of all, I feel no better for it. Getting out of bed this morning, I feel the same tiredness I feel all the time. There is no reward of refreshed body. Also, nobody seemed to notice, or care that much, that I was in bed all day. I would say the worst outcome of this is that I didn't feel at all bad or uncomfortable, perhaps quite the reverse. It would be easy for me to spend a lot more days like this, doing nothing by laying in bed. I don't know that this is a good thing.

My experience with ALS is that once I stop doing something, I am unlikely to go back to it willingly. It becomes too difficult. So if I stop getting out of bed each day, at what point will laying in bed become the norm, and moving about will become the difficult? Still, it was sure easy, just laying there, drifting in and out of sleep. I hate to say that I liked it, but I liked it. I didn't want to get up this morning either.


  1. Are you using a BiPap to assist with night time breathing issues? A sudden drop in energy (you DID stay in bed for 36 hours after all) can indicate something new.

    1. I have been thinking about breathing issues, yet I have none during the day except every now and again. This drop in energy is not sudden. It's been going on for many months, even years.