Poll: did strict pacing help you?

[Judee]

I actually think, and with my own proof, that radically resting (like for 6 months) right after the initial infection can be the difference between recovering fully, or having ME/CFS for life.

I tell people though that if they "recover" they should still live with the idea that they have ME for life and could relapse at anytime. I advise them to make lifestyle changes anyway even if they are feeling better because it's just not worth the chance of it ending up permanent like so many of us here.

It's hard though because the human inclination is to live life to it's fullest and anytime I ever have felt even slightly better, I tend to push and do things.

I've only ever had one slight remission in 40+ years of ME and that only lasted about 16 hours but even that day I thought, "Finally, I'm going to get better now."

And even if it was a medication or supplement that did it, I can't tell you how many times I've read in these pages, "It worked for a week or two and then stopped working."

I really hate this disease.

 

[Wishful]

Pacing is essential or the person will go downhill fast. That seems fairly well established.

There's a subset where pacing isn't really necessary. Some can do what they need to (replace a roof in my case), requiring physical exertion for hours of each day, and just put up with the PEM, and not suffer any long term problems. Not that everyone can ignore pacing, but long term effects from exertion are not guaranteed from ignoring pacing.

 

[Florida Guy]

I tell people though that if they "recover" they should still live with the idea that they have ME for life and could relapse at anytime. I advise them to make lifestyle changes anyway even if they are feeling better because it's just not worth the chance of it ending up permanent like so many of us here.

Absolutely! The saddest stories I have read are those where the person seemed to recover then tried to do all the things they used to do and ended up severe again possibly permanently. I have accepted the idea that at most I will be able to socialize and travel again if I improve but never will be able to be fully active and there is the possibility of no improvement but staying on the same level is not too bad.

 

[Florida Guy]

There's a subset where pacing isn't really necessary. Some can do what they need to (replace a roof in my case), requiring physical exertion for hours of each day, and just put up with the PEM, and not suffer any long term problems. Not that everyone can ignore pacing, but long term effects from exertion are not guaranteed from ignoring pacing.

You are unique in that physical exertion doesn't bother you as much as the typical pw/Me. For me the physical is the hard part while for someone else it might be mental exertion or emotion that causes the most problems. Very few will be able to do what you are doing

I kind of get what you said in another thread about motivation. If I know I have to do something like get groceries, I just go ahead and do it, I don't have to get motivated. I just pick a good time and do it. If its optional and I can put it off, it gets put off. Before I realized that going to meetups were no longer fun and made me feel drained every time, I would plan to go but at the last minute I would not want to go and would think of any excuse not to do it. Now I don't bother, I just don't go

Its nice that you can do a lot of exertion and "put up with" the pem without crashing but I think most will not be able to do the same

 

[Wishful]

You are unique in that physical exertion doesn't bother you as much as the typical pw/Me.

Not unique, since several other people reported similar ability. We may make up a small subset, but we do prove that the physical limitations aren't an essential part of ME. It's possible that some people could have a special "counter an essential part of ME" quirk (meaning that they have the limitation problem, but something counters it), so one or two exceptions don't prove that something isn't an essential part of ME, but I think there are enough people without the physical issues to make it non-essential.

Some of us don't have physically-induced PEM, and some don't have cognitively-induced PEM, so that's another symptom that may not be essential to ME.