Anyone feeling like he's living on a thread

[YippeeKi YOW !!]

I really feel that the next big PEM could lead me to the grave. I don't know if anyone feels the same?

I'm just coming out of a somewhat more minor, vegetative-ish form of that.

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.

PEM is like a bomb exploding inside of the body. It's no Joke.

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.

Because i'm nit living anymore, i am just surviving.

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.

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 really hope i can bounce back!

I promise you can.

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 !!!!

 

[YippeeKi YOW !!]

Although there are many "triggers" that cause ME/CFS, I think there is just one primary cause for most of us.

I think this little buggery bugger is more complex than that, and that's why finding a one-size-fits-all solution is so tough. Maybe the variations are all in the same stadium, but definitely hunkering down snidely in different bleachers ....

 

[YippeeKi YOW !!]

when I read the title my first thought was "No, it doesn't feel like living on a skinny little thread.

For me its more like balancing on the business edge of a razor, knowing that one wrong step and ... BANG !!!

 

[Eddy M]

I'm just coming out of a somewhat more minor, vegetative-ish form of that.

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.

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.

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.

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 !!!!

I have faith and hope.

 

[lenora]

I also find that eating a lot of starchy carbs, or especially starches like potatoes and rice hurt my digestive system a lot. I already avoid them but I didn't know about the neuroinflammation link.

How did you did you discover that you had leaky gut and that specifically starches were the culprit?

@Insomniac & @Jimbo39.......I have the exact same question. Any input would be helpful. Thx. Lenora.

I've been in bed since 2015. I get it. I was very poorly off for an extended period of time. But my wife would always say the same thing each time I thought my life was coming to a premature conclusion (which happened to be a daily occurrence back then).

"You always make it through, you always get past these terrible episodes."

I started improving gradually (diet changes, meditation, improved sleep). And now I can keep the blinds open during the day, openly communicate with others, do productive things on my tablet, and watch/listen to media (with some regularity).

Not focusing on my limitations, and not focusing on the end of my existence, has helped overall. If nothing else, I control my thoughts. And I go, where my thoughts go.

You can do this. Others have improved.

H

Yes, you have to somehow become an active participant in life again. I'm not talking about being the person you once were, but working on who you are now and go from there. A worthwhile life isn't just one filled with money and image....it's many things. Time certainly teaches one that lesson. The challenge is to find and use them. I hope you stay fairly healthy, @Howard. Good for you wife for the reminder.