Getting stability ... Experiences please

Emmarose47

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Hi I declined September and my symptoms can be more erratic now . So one day I can feel well and good and then Bang I'm gone again .
I'm house / part bed .
I got stable ground by fine tune pacing which was good news and had 10 days of low to no sympts . So shows I can make progress.
I dared to walk to neighbours 2 doors away and socialise and am back down the rabbit hole over a wk now . History says it will take me wks to get to the stable ground again .
So I'm looking for people's experience on getting to stable ground and how u have played it to not tip ...

All experiences welcome
 
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At some point, we fail. Because we are humans.

I was doing considerably better last week. That took at least 60 days to achieve. I felt pretty good on Friday, did some very tiny modest things. None of it felt like I was pushing my luck.

2 pm on Saturday started up one of the worse crashes I've ever had. Monday night I've got a fever and it must be COVID. I was in quasi- shock.

This recent descent has left me further PTSD.
 

halcyon

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One of the seemingly contradictory maxims I've come up with for this disease, especially when moderate or severe, is that the better you feel, the less you should do. This disease is well known for its fluctuating course. Just because you might be feeling better, doesn't necessarily say anything about what's going on under the hood.

So, sudden shifts in ability should be viewed with caution and skepticism, rather than an invitation to suddenly do more. I think it's much better to find that stable baseline, and then make very tiny excursions out from it, and space them out, rather than going from 0-100 in one day.
 

Emmarose47

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So true ...
It didn't used to be like this ....I could get stable and then increase ...go in community etc ...but ye I did end up crashing cause I took it too far ..
Since my going way to far end of summer I'm more unstable ...
Sitting with stable and sitting with it and sitting with it .....and ......
Seems to be a possible way
 

Emmarose47

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It scares me though the feeling quite well and keeping small ... Seems easier in a way to do when I feel crap ...
I also feel like a fraud but then that is worrying what other people think and what I've learnt is people are too wrapped up in self to worry .
So what scares me ....um I guess it's somehow I'm surrendering to this syndrome ...if I'm stable and living housebound I'm somehow more imprisoned . When what would be more helpful is to see I'm winning ..I'm gained some ground and I'm maintaining it . Somehow I need to be able to deal with the yearnings for more when I'm more well . Instead of taking action and shooting myself .
Also scared to keep losing the stability ...what the longer term effects of that are ...i don't have that much farther to fall .