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What would you be doing if you weren't riddled with ME/CFS

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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
1kuzs6.jpg
 
K

keenly

Senior Member
Messages
816
Location
UK
I was in college doing a 2 year Sports science course, had surgery on toenail, caught an infection, complications, lots of antibiotics...........
 
E

erin

Senior Member
Messages
885
I had a degree in art, used to spend my days in my studio painting. I went to abroad many countries had workshops. I had group exhibitions, was planning to have a solo just before I had ME, All had to stop. Now I am not only physically not capable but mentally not good to do all these. If I go back to my healthy state I'm not sure I will be able to pick up the pieces from where I left. Everything had moved on, the art scene is different now, lost all my network. I still would like to be able to paint, just for my self.

So much lost in time, I can't have children now as I'm old. I will never be able to come terms with this. I couldn't even spend time with nieces and nephews when they were younger. I would like to catch up with them and spend more time, if get better. But would they be interested in now?

It's quite depressing. I guess to answer the question is I don't know what I would do. I've lost all I had. I need to find new thing and start from scratch. Difficult.
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
Walking, running, riding, dancing, working, learning, doing, travelling, loving. Just the normal stuff I did before.

p.s. you did word it a bit strangely. It's not as if we have a choice on how we spend our lives now.
Many of us have an online presence because it is one of the few activities we can do at times. Even then it isn't something we can do as much as we would like (i.e. cannot type or read from screen without using precious energy)
 
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maybe some day

maybe some day

Senior Member
Messages
775
Location
West coast
I would dust off my motorcycle, fill a backpack, and take a ride up the coast..maybe into Canada. I want so badly to be on a road trip. When my health does improve I am able to get on the bike and put a few miles on it just to get out. For that one moment..i can forget im sick.
If someone gave me full health tomorrow, I would just break down emotionally. That this battle is finally over and I survived it. Yeah, thats the first thing.
 
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A

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
Dainty said:
If I had never come down with ME/CFS, I would have married young to the first guy I dated, had a bunch of kids by now, and living life in a quiet frenzy convincing myself I was content in a religion that wasn't okay with me being myself.
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I hope you don't mind if i ask what you mean?
 
Dainty

Dainty

Senior Member
Messages
1,751
Location
Seattle
Alvin2 said:
I hope you don't mind if i ask what you mean?
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I'm happy to explain, I'm just wary of breaking PR's rules about discussing religion.

I was raised in a family that was very conservative Evangelical Christians in the US who have very strong beliefs about gender roles, "purity" before marriage, and aligning all emotions to what they say you're "supposed" to feel, which requires a pretty extreme amount of self-deception. For example, it was never ever EVER okay for me to feel or express any form of anger whatsoever, my entire life. This was so well drilled into me that I was literally incapable of detecting when I felt it. I had learn backwards, starting from "I seem to be slamming cupboards and doors, maybe I'm angry? I don't know?" and sit down with myself and strain to tune in, reaching inside myself and feeling nothing there, but knowing there had to be. Gradually, I learned how to sense and identify it. It took a good year or so. And that's just one small example, of at least hundreds.

Being selfish was one of the greatest "sins" of all, and it turned out that mindset was interfering with healing to the extent my body could under this illness. Doing "nothing" wasn't okay, unless it was physically impossible to move. Avoiding things that were stressful wasn't okay. Refusing to help instead of sacrificing your wants/needs for someone else was not okay. Speaking of which, "wants" were considered unimportant and should never be given any weight at all in decision-making. I was taught from babyhood not to trust my own thoughts or feelings on anything. Anything at all.

I could write a freakin' book on it, and maybe I will someday. It's a lot to grasp for those who have never encountered it. It's an entire subculture, with many cult-like tendencies that make it extremely difficult to leave. The only reason I considered it is because a friend pointed out that certain beliefs were significantly contributing to exhaustion. And as I was dying at the time, I had to choose between dying or letting go of some of these things. And when I did, I ended up liking the real world a whole lot better. :)

Not all Christians are like this, in fact I still consider myself one, but I actively reject conservative Christian culture as very unhealthy.
 
A

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
Dainty said:
I'm happy to explain, I'm just wary of breaking PR's rules about discussing religion.

I was raised in a family that was very conservative Evangelical Christians in the US who have very strong beliefs about gender roles, "purity" before marriage, and aligning all emotions to what they say you're "supposed" to feel, which requires a pretty extreme amount of self-deception. For example, it was never ever EVER okay for me to feel or express any form of anger whatsoever, my entire life. This was so well drilled into me that I was literally incapable of detecting when I felt it. I had learn backwards, starting from "I seem to be slamming cupboards and doors, maybe I'm angry? I don't know?" and sit down with myself and strain to tune in, reaching inside myself and feeling nothing there, but knowing there had to be. Gradually, I learned how to sense and identify it. It took a good year or so. And that's just one small example, of at least hundreds.

Being selfish was one of the greatest "sins" of all, and it turned out that mindset was interfering with healing to the extent my body could under this illness. Doing "nothing" wasn't okay, unless it was physically impossible to move. Avoiding things that were stressful wasn't okay. Refusing to help instead of sacrificing your wants/needs for someone else was not okay. Speaking of which, "wants" were considered unimportant and should never be given any weight at all in decision-making. I was taught from babyhood not to trust my own thoughts or feelings on anything. Anything at all.

I could write a freakin' book on it, and maybe I will someday. It's a lot to grasp for those who have never encountered it. It's an entire subculture, with many cult-like tendencies that make it extremely difficult to leave. The only reason I considered it is because a friend pointed out that certain beliefs were significantly contributing to exhaustion. And as I was dying at the time, I had to choose between dying or letting go of some of these things. And when I did, I ended up liking the real world a whole lot better. :)

Not all Christians are like this, in fact I still consider myself one, but I actively reject conservative Christian culture as very unhealthy.
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Aye carumba, that is completely crazy :jaw-drop:
You should write a book, its very illuminating for people to read about things they have not had personal experience with, to understand the world we live in and to expand our horizons as a way to grow.
 
D

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Interesting thread - I liked my life pre-ME but I wouldn't go back to it now if I was well...
I think that being ill makes you radically rethink what is important and let go of things that are basically unimportant.
I would certainly spend more time having fun and less time working than I did before I got ill! I think my professional ambition would be something I wouldn't want back... I'd rather have more time for doing things I really enjoy personally.
Cue image of myself galloping on a horse along a deserted beach.....

So many years have gone now that many of my pre-illness life goals aren't actually possible any more. I'm reconciled to that though.

If I suddenly felt good today - I'd go out for brunch with my other half, go for a lovely walk, perhaps go to the movies, call up friends for a long chat, and have a celebratory big glass of wine!
 
dangermouse

dangermouse

Senior Member
Messages
430
daisybell said:
Interesting thread - I liked my life pre-ME but I wouldn't go back to it now if I was well...
I think that being ill makes you radically rethink what is important and let go of things that are basically unimportant.
I would certainly spend more time having fun and less time working than I did before I got ill! I think my professional ambition would be something I wouldn't want back... I'd rather have more time for doing things I really enjoy personally.
Cue image of myself galloping on a horse along a deserted beach.....

So many years have gone now that many of my pre-illness life goals aren't actually possible any more. I'm reconciled to that though.

If I suddenly felt good today - I'd go out for brunch with my other half, go for a lovely walk, perhaps go to the movies, call up friends for a long chat, and have a celebratory big glass of wine!
Click to expand...


I'd love to be able to ride a horse again :thumbsup:
 
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