Pacing in the stable phase ..experience please ......

[Emmarose47]

May I ask your experience .. ( if u up to it
I'm out of the flare up and stable ... Not having any symptoms horray ! Flare up was 2 wks +
I've spent a good extra couple of wks keeping things small and in baseline ...
Now comes the next stage ... Too much sitting breeds lethargy ( and boredom ...
I can do things sitting down of course but the act of sitting a lot feels difficult to tolerate and also there is a window to increase but how on earth I know what that looks like is a whole new ball game ...
I'm so scared to over do and flare again it puts such a strain on my mental health and lasts for so long ...
Yet to not have the goal of increasing feels too crap ..
It's a tricky one because if it was just down to increasing steps on a walk that could be more manageable I think but I use my extra steps in and out the garden and it's not so easy to keep that completely measured .
Maybe it's a case of I'm just doing my best with what I think , listening to my body and being grateful ...??
All experience and suggestions welcome

 

[Rufous McKinney]

Yet to not have the goal of increasing feels too crap ..

yeah- all that.

So there is a certain level of activity you know you can get away with. (and why in my case do i feel like this is less than six months ago, ever less?).

In my case, a bit of energy mostly gets used to clean something. and everything here is a mess. It comes down to the bare essentials- putting some food together, cleaning up the food mess. I will wear dirty clothes for a long time. We just let personal hygiene go- when we were CLEAN people before this plague.

My husband said he'd bring back some take out. I was going downhill, having not eatten in 7 hours. He comes back with no takeout- Oh they were closed he says. well WTF am I supposed to do as my back developed a sudden onset seizure and I am having trouble standing now. I can't stand, therefore I cannot eat?

If I go down the stairs once, I live thru it. I do that three times its: PEM for 3 days. Or: I'm down by the garbage can and now my foot siezes up and I can't walk back 50 feet to my apartment. My foot was fine one minute ago.

It's a tricky one because if it was just down to increasing steps on a walk that could be more manageable I think but I use my extra steps in and out the garden and it's not so easy to keep that completely measured .

So one idea might simply be to try the Three Day Rule. If you do a bit more on Day one, you don't do anything more for the next two days.

WHen I did a GETS test on myself- knowing i Needed to get thru the airport, I walked around the block three days in a row and spent the next 60 DAYS in severe PEM and more damage.

I did succeed in getting stronger arms when my grandaughter was here and I had to lift her and hold her. At first it was near impossible, but I did get stronger over time. (and when she was here, I would crash out major during her naps).

Now I cannot lift the darn one gallon glass water bottle very well. I"ve gone backwards. There are some barbells here> so that means- lift bar bells- three times. spend a month and maybe I can get to ten times.

Is it just steps?
I think we tend to focus on the physicalities, when things like mental and emotional are also somehow using up spoons. Mental certainly is, as do negative emotions. And mental exertion is a whole lot more difficult to bracket and manage in my opinion.