I've got a bit stronger this past week through resting, even though it’s been a shame to miss out on swimming and beach time as much as I’d like to. I rented Joey and Odette’s car for very little and have loved the mobility. I’ve been driving around the island (exactly that - the main road takes you around the island in about 45 mins at a max speed of abrout 50K an hour), listening to the joyous thing that is island radio.
Yesterday I was doing a smallish grocery shop for Aitutaki in Rarotonga's only main supermarket and my body did that old cutting out thing again. ‘Cutting out’ is the right way of putting it - it feels as if something in you really has been cut. As if you've accidently passed through a kind of invisible wall. You can almost smell burning. And the puppeteer has let go of all the strings. Suddenly walking a step further becomes a real struggle. I thought I was taking it very steady all morning so there were no warning signs this time. A total surprise.
And Petra, a German friend I've met here gave me some wonderful advice tonight. I was telling her about what had happened today on her deck (in the photo above), giant palms creaking and swaying in the wind above us, the waves breaking on the reef below. "When it happens again, how about welcoming it in like an old friend?"
I still - still, after all this time - do the opposite of that. To me, the cutting out, the shut down is still the sign that something is really wrong in my body. Sometimes I do gently feel my way through it. Carry on a little. Coax my body gently on. Most of the time though it means Game Over. I’m the one who has miscalculated. And I now have to navigate my way, with it somehow, back home or to somewhere where I can lie down.
I thought this was over. I thought this part was done. I thought this lesson had been learned. I thought I was capable of getting my way through a small baskets’ worth of supermarket shopping.
You must be bored of this by now. I certainly am.
I am learning - still - that recovery is waves of crashing and building up strength again. I feel responsible for these crashes because I know they can be exacerbated by the travelling, I also hear again and again that they are an inevitable part of CFS. My hope is that over time the crashes become less severe, less frequent and hopefully take less time to recover from. I had forgotten what I learned in Anahata in New Zealand about accepting things the way they are, just as they are. Right now.
So I’m going to try it. “Hello old friend. You’ve come back! So good to see you. Did you have something you still want to tell me...?”.
An ME/CFS Thriver