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The original was posted on /r/cfs by /u/kamryn_zip on 2025-01-20 22:13:25+00:00.
My OT has generally been great, very supportive and helpful with pacing. She gave me a sheet with a stoplight system where most of my tasks should be green (doesn't increase symptoms at all) some can be yellow (may increase symptoms like pain or shortness of breath during, but it doesn't linger) and none should be red (causes PEM). I am moderate and Saturday/Sunday I had a crash. Sunday was so hard, I had to take my dog out and just getting dressed for the cold was so hard. I ended up collapsing and laying on the floor for a while before rallying and getting the job done. My therapist asked how many times I got up in the day. I estimated 7, 2 dog outs a few bathroom breaks, to get some more food and refill my water, and to brush my teeth. I get that's still a decent number of moments out of bed compared to severe folks, I am grateful to have at least enough independence to not need a bedpan and to be able to brush my teeth atm. That said, even doing that much I was in so much pain and so miserable. I didn't even really watch videos or play games for the day because I couldn't think or look at screens for long.
My OT heard this and said that was a lot of up and down, but rather than make recommendations to have a spit cup and brush my teeth in bed, or a bed pan or smthn, she recommended that while I am up I try to add in a couple extra laps walking each time I am up. I started crying almost immediately, I'm not sure if I'm extra sensitive or way off base because I'm just coming out of a crash so I was hoping for some reality testing from the community. She told me that the change in position is often hard on the body, so staying up for longer actually reduces the strain. I was crying because I was thinking about how profoundly miserable every single time I got up yesterday was, and picturing telling myself "No, you can't lay back down yet, you need to do a little bit of extra steps" ;_; Is she right to say that I should stay up and add some extra steps in order to go longer without changing positiion?