I am opposed to anyone who tells a person with M.E. that fear of exacerbating symptoms is what’s holding them back from recovery.
An example? Telling a person with M.E. the reason they’re not pushing their body to go for a walk is because they’re scared… How about the reason they’re not going for a walk is because they’re too unwell to go for a walk?
Oh but you (the person not living with M.E.) disagrees?! Irrelevant. A thousand apologies but your opinion holds no weight in such a matter.
If I am brave enough to tell you that a certain activity is beyond my limits (because of the restrictions M.E. places on my life) do not respond by saying you think I’m merely being pessimistic about what I can manage. I know what I can manage. I know what I can manage. I know what I can manage!
The other day I was told I was being pessimistic for saying I wouldn’t be well enough to do a certain something a couple of months down the line.
Pessimistic? Nah. That’s being realistic mate.
Sure, maybe there IS an element of preparing myself for the worst; saying “No” now so that I avoid the heart wrenching disappointment later on. But, regardless of those very valid side notes, I know my body best.
It is not fear that is holding me back. M.E. is what’s holding me back.
To be brave enough to admit to your ‘limitations’ only for the response to be that I’m “pessimistic”…well, it hurts actually.
But it doesn’t hurt enough for me to push myself to try to do The Thing you think I can and should do.
I think I’ve given up in expecting anyone who doesn’t “know me” to understand/empathise in what my life is like and what I can and can’t do….don’t waste precious energy in trying to explain…keep ur energy for those who love and care for you and of course for yourself. Take care Jackie x
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