The issue for those who only find PEM disappearing whilst bedbound unfortunately brings other problems in the body. So from
my observation my daughter needs to walk around a little in the house when she can, yes with PEM, in order not to aggravate other problems— back ache, neck pain, leg pain etc. I just don’t know how to help with this hell!
Hi
@Perrier i read some of your messages in this thread and just wanted to share what helped / is helping me.
I think pacing when severe or very severe is very different to pacing when mild/moderate. I found a lot of the resources and/or stories, while they gave me inspiration or helped with staying positive, didn’t really apply as much to my situation. For one thing, I felt like I was resting all the time / in bed anyway, and only 1 or 2 rest periods a day was nowhere near enough.
the first time I came across something that helped me more, was the pacing schedule on this website (scroll down):
http://understandingsevereme.blogspot.com/2018/05/my-story-part-6.html?m=1
This person is currently at a more functional level than I am in terms of physical activity, so I had to adapt it to my situation.but the principles remained the same. I also discussed this with the nurse at the ME trust who also gave me a slightly different pacing plan.
Pacing plan like on the website: for every hour of “activity”, half an hour of full rest. And rest was not reading, using a phone etc. It’s full mental / emotional rest ie a body scan or a meditation. With an eye mask / in the dark, and quiet.
The first thing I did was reduce all my activity. And for activity, my least tiring activity was audiobooks. So I could do an hour of that if I wanted to. Or, I could use my phone / go online - I’d restrict that (I aimed for my 10-20 mins, then I’d listen to audiobooks for the remaining 40 minutes. But I tried not to go online like this each hour - only a few times a day, to save energy). For your daughter, this could include the small amount of walking she does, like what’s on the website.
Pacing plan which the ME trust taught me: 4 periods of “rest” everyday, same as above. But each rest period is longer, eg 1 hour. So 1 hour in the morning before lunch, one after lunch, one before dinner, one after dinner. And then in between those rest periods, plan my day so that I do small chunks of “activity” again. (For meditation I use the calm app, Jon kabat zinn’s meditations (lying down meditations, lake, and all of CD 3) and breathworks breathing meditations. I just find guided meditation easier, but sometimes I do just lie in silence doing breathing meditation.)
activity for severe ME includes everything. Including sitting up (or not) to drink water. And having the window very slightly open for light (if we tolerate light!). It doesn’t mean I have to write it down and plan it to the last detail, but as long as being mindful that those can be tiring too - and not try to cram in too much “activity”. As just eating, drinking, getting to commode/toilet/using bedpan is so hard in itself. It may be good to make a list of “activities” they can currently do.
The website talks about “switching” these small activities too.
of course sometimes (often) life gets in the way and I have to do important tasks, there are things that only I can do, but then I try to take more rest periods the next days to make up for it, and reduce activities that are more tiring.
When I last did this before hospital, I found it helped me and after a few days / a week of sticking to this, it made a difference. But everyone is different. I’m getting back on track to doing this pacing again regularly.
I hope that helps a bit
