YippeeKi YOW !!
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I'm just coming out of a somewhat more minor, vegetative-ish form of that.I really feel that the next big PEM could lead me to the grave. I don't know if anyone feels the same?
I think you'll find a lot of us here deal with PEM in various stages of severity that comes and goes. Which I'm grateful for, cause there was a time when it came with all its luggage, and just settled in for a very very long stay.
For me, it's like a slow-burning fuse that emits more and more toxic smoke until it finally explodes, which I was waiting for tremulously since the slow burn started, knowing the inevitable outcome.PEM is like a bomb exploding inside of the body. It's no Joke.
Omigo ..... I just dragged myself out of that pit, looking around at what's left of my life and the wreckage this illness has left in its wake and it took all my energy to stop the cycle.Because i'm nit living anymore, i am just surviving.
The rest of the time I practice careful denial. I do what I can, when I can, and am grateful when I can straighten out a small corner or two.
I promise you can.I really hope i can bounce back!
The difficulty is figuring out how.
Most of us did it by researching anything that seemed applicable, either in these threads or in the Googleverse, and swallowing hard and trialing various substances that seemed to hold out some promise. Not all of them produced effects, only a very few produced negative effects, and finally, each of us in our own way found a few things that helped, and with the added energy produced by even a modest diminution of symptoms, were able to gradually find one or two more.
It's a slow and often demoralizing process. You just gotta stick to it and practice faith. And gratitude helps, for me at least, tho some days all I could be grateful for was the in/out movement of air in my lungs..
When I say 'Faith', I mean faith in the positive outcome. Faith that, in spite of the many different ways this multi-universed illness expresses, there's something that may not have worked for anyone else, but WILL work for you. For @Wishful, it was the unlikely common kitchen spice, cumin. Who'd have thunk it? For @ljimbo423 it was discovering gut dysbiosis and finding ways to improve it.
You'll find your "Aha!!!" moment, it just takes time, and effort that we don't have enough energy to produce on a predictable schedule. It took me a couple of years of slowly plodding thru research studies I could barely focus on enough to comprehend more than the pronouns and conjunctions, and had to keep re-reading because Id forgotten everything I'd read the day before when my fatigue overwhelmed me and I had to quit.
This isn't forever. It's just for now. Things change .....
Onward and upward