Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Jan 5, 2018.
It's a good story and I am impressed with the writer and his wife. I used to love stories like this in which people push the boundaries of what we expect vs what is possible.
I love that he tells it as a young man who wants what they do want, not as some sort of positive thinking android.
And that she says that not knowing what lay ahead but only that it might work out was best.
Now, on a more personal level:
I find it hard to negotiate the conflicting narratives between
those who are disabled and can push themselves as hard as they like (without more than a bit of tiredness) but only within hard physical limits
and those who are perhaps more able-bodied but who cannot afford to push themselves even so much as they need each day (without horrible consequences and possibly long term harm).
I decided some time ago that I need to find more narratives of people with my sort of limitations.
The kind that I really haven't a clue how to negotiate: fighting harder is exactly what I need to stop doing.
I've fed and lead my life with narratives (the heroine of a fairy tale when doing chores as a little girl, the bold adventurer when travelling alone and things got hard, the pioneer when building our own house and living in a tent blown down in the storms...etc) but I've not easily found good narrative to a condition that requires that I rest, that I choose not to achieve or act etc.
The closest I got was the sort of glancing view of a sick girl in 'what Katie did' or Heidi: to be sweet tempered when in pain, to encourage others while stuck inside, etc. ...but that leads to being hard on myself when others see my valiant efforts at sweetness to mean that I'm fine and simply need encouragement to do more.
I've found the narrative of the hypothetical zen master a little more empowering: learning the power of not doing, the infinite limits of what does not need to be done, the ability to be, no matter the surrounding circumstance ...etc.
One day, I dream of being able to write the narrative of someone who needs to learn to not do, then not do again, and can look back on a good life overall. Maybe someone here knows one already?
It has taken time for this story (modern love how 30 blocks became 30 years) to come together as it has. The world has had to tell a lot of different stories along the way. So it gives me some hope that one day my kind of story will be there for the next person who faces ME.
So true. I've also learned that it takes more self discipline to stop fighting than it ever did to soldier on, even though I've also l learned soldiering on for just a little while will leave me incapable of doing anything at all.
Thank you for posting your response to that article @Subtropical Island .
The depth of your response hurts but I too hope a way of telling your kind of story ( and mine) will one day be there.
You explain it so well :I didn't know I needed to know this so thank you.
I love this, @Subtropical Island! I feel proud of how I've learned to let go of all those worldly desires - to accomplish, to succeed, to adventure, to have fun - and still have managed to find much joy in my life. It is worth being proud of that.
I hope you do!
On the one hand, good for him.
On the other hand, yet another inspiring story for people who like saying "look, if he can do it ... " to wrap up with generic positivity advice and throw at you.
But good for him.
And her of course.
And this is what I have failed at over my 13 or so years with ME.
Perhaps its because the centre of my life before was hiking and I have never been a spiritual or touchy-feely person. If @Woolie or @Subtropical Island or anyone else know of any resources that could help me make progress with this most difficult thing, the letting go of my previous self and values, I really would be enormously grateful.
I am at a turning point in my life having split up with my partner of 14 years and moved back to the UK. Im now in a situation that is complex and difficult in many ways and I need all the help I can get. It's hard for me to even open up and ask for help because I have always valued my independence so highly.
If Im in danger of taking the thread off topic, please use PM.
You're not alone @OverTheHills
2 decades in and I still haven't got the hang of it.
A work in progress...
Because the question of how to accept ME and find peace with it has come up in a couple of threads I've started a new one:
Separate names with a comma.