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The Unavoidable Loss Of Limbs

The worst kind of crash is the one where you don’t know what you did or how you went over your limits. ME/CFS is already a cruel monster. It punishes us without restraint based on a set of rules that are unbelievably strict and ruthless in their enforcement; And near impossible to adhere to even if we had all of our health at full function. It is unfeasible to even figure out what the rules are exactly. They are not spelled out yet they are somehow written in stone. And we don’t have the right senses to detect where they are or when to stop, every part of our bodies are designed to go and to keep going as long and as far as possible. This is something that has evolved in us over thousand of years for surviving in the wild, and we are capable of extreme survival in the wild when we are healthy. But with ME/CFS, it is the opposite skill set needed. We need to do less than is possible for us in order to survive.

And then sometimes the ME/CFS monster punishes us when we are planning ahead and desperately and humbly trying our best to stay within our limits and believe we have and when it strikes us down we do not even know which toe crossed the line. There is nothing to learn from, nothing to take from the experience. Only meaningless, misconceived, suffering and loss. Even an angry God would treat its subjects with more decency than ME/CFS gives us. For when we are on our knees begging for mercy in any way we can, when we give up our lives and our autonomy and our dignity, the punishment does not relent.

It is like trying to traverse an endless minefield with a broken mine detector and no rest, reprieve or reward for success. Just endless mines for which we must find the will to avoid and then live with the unavoidable loss of limbs.

But we continue to traverse this minefield because though it seems endless, we know it is not. We have knowledge of an end in sight, and this hope is all we need to endure the pain and loss and keep crawling our way towards freedom; Mines exploding to our left and to our right and even under us sometimes too, battering us to pieces.

To freedom. Though we may get there scraggly, war torn, dirty, exhausted, blurry eyed, dizzy, and nearly destroyed, we will get there and then we will get it all back. And it will be worth all of the suffering along the way. For we will rise like pond lilies from the forlorn landscape of ME/CFS to to a place we have only imagined in our dreams; The ease of existing in a healthy body. No more checking every action, no more self monitoring. Just thought and action. Free.



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