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...?”.
The fishing club lunch stop while I was on the bike.
I'm taking a bit of time to adapt to the tropics. On the first day here, I think the most dangerous set of words I’m learning (in hindsight) I can ever say to myself: "I'm doing really well...perhaps I can start to get fit now?"
And... I don't know what I was really thinking. Except that I can't have been feeling too bad physically because it didn’t even cross my mind to think of a different way of travelling such a short distance to the beach (about 2K). This doesn’t feel like the moment to become a first time scooter user (accidents are infamous here).
I jumped on a rusty bike and got peddling towards Muri beach. I’ve missed cycling so much. But this is in the tropical heat. It took me a little bit too long to notice that the heat has been zapping all the energy I’ve got. And it's not enough that I did it one day. I cycled two days in a row. By the second day, still peddling a relatively short distance, my body started telling me I had pushed it way, way too far. I had to leave my bike parked by the museum. I rested on the beach (in a hammock with a coconut - none of this story is that tragic!!). I caught a taxi home and explained what had happened to the bike. Odette headed back to rescue it later.
I've managed to exercise my way into that cut out, "broken" feeling (calling it tiredness or exhaustion doesn't really do the feeling of CFS justice). What I didn’t really notice was quite how much all the travelling to get here was such a push. I notice a little too late that perhaps I’ve been slightly running on adrenaline since the day I left the Anahata mountain top in New Zealand.
Something can’t quite click in Rarotonga. I’m finding the place quite hard work... and I feel as if I shouldn’t be feeling this way given that it’s exactly the sort of tropical island paradise I have always dreamed of. But this is just another reminder of the impact our internal state can have on us compared to where we physically are. I know I am in a wonderful place. And today it is really, really hard.
I’m staying on the farm now, resting. Recovering. It is a crash - I now have a little bungalow on the farm to myself and I do manage to stand up and cook something to eat, but it’s a struggle. I was doing so well. I don’t expect this crash to take the 2-3 months the last one took to recover from. But today I suddenly feel very, very far from home and wonder what I’m really doing here.
I get in the car in the Rarotonga airport carpark next to Joe/Joey. He was the right Joey. I'm just about to put my seatbelt on and Joey quickly stops me (he says everything quickly) “We never wear seat belts here”. "I'm sure Joey. I'll just need a bit of time to get used to that" I reply, clicking myself in. To prove his point the belt leaves a diagonal line of dust along my top. He drives me the 20 mins or so to their smallholding off the Matavera back road at the foot of the deep-green covered volcanic peaks that form the centre of the island. Hens and roosters are everywhere. Plus a couple of goats, some cats and a pig.
Joey’s German wife, Odette is a generous powerhouse of a woman who manages to keep up her job in an insurance company while looking after up to 7 Airbnb travellers at a time. I very nearly step on a baby chick running around the deck that was separated from its family and now thinks Odette is its mother. It goes everywhere with her, running around her desk at the insurance company and along the kitchen counter while she’s cooking.
Nights are noisy. Crickets, dogs in the distance, the odd fly or mosquito close by.. It reaches a crescendo in the early hours of the morning when life screams itself into existence. And even all of those sounds are drowned out by a sonic Mexican wave of what sounds as if every rooster on the island (quite possibly more roosters than people) is in some kind of a competition to see who can ‘rooster’ the loudest. I start to identify different individuals on the farm, one rooster who has a hilariously unselfconscious pathetic little croak. The first Rooster-Off begins about 2am, then returns at 4am, 5am.. by 6am the day is pretty much up and running and the sounds of the other island birds can be heard again.
We have long extended breakfasts all together on the deck, talking about island life and travellers tales. Joey finds me fresh coconuts. The heat swells. It rains on and off.
I'm still enjoying the fact that I left Auckland early this morning on a Monday, and here I am a few hours later in the middle of the Sunday afternoon of the previous day. A whole extra 22 hrs of life. Only I don't think you'd be able to keep repeating this without losing a day on the way back.
I realise almost every flight on this trip has turned into an indicator of where my mobility is at. And today the signs are pretty good. I still needed the chair for Auckland airport, it's still a lot of walking and I'm not taking any chances. But a lot of my current discomfort is just normal stuff that happens when you travel... I only got 3 hrs sleep last night (excitement combined with the last night with my sister) and I have a bit of a dodgy tum (too much Fix and Fog chilli and Manuka smoke peanut butter?!). Even though I am tired, this is a thousand miles away from crying with exhaustion. So different to even the Sydney - Auckland flight of 2 months ago. I am SO HAPPY I am well enough to do this. So tentatively relieved that I am going back in the direction of home stronger and physically capable of enjoying myself.
I'm in a full blown tropical island paradise. A small circle of green, fringed by a reef, exploding with palm trees and a set of precipitous volcanic peaks from the air. I walked down the steps of the plane into the wobbling heat. I have that feeling of landing in a completely new country and culture that I haven't felt for years. I can smell frangipanis. Everyone, minus the very occasional tourist, seems notably happy. The airport is smaller than many bus stations but I'm still grateful my special assistance status means a woman in a large green dress and garlands of Polynesian flowers on her head took me to the front of the queue. A little bit of me is wondering how much of this is just a pastiche of paradise while someone plays steel guitar over a drum machine. I hand over my customs declaration (my suitcase is stuffed with groceries for the second island, Aitutaki) and... no, my food stash is indeed fine. The lone official says, "Ah, I'm Joe, you're staying with me.... Wait over there, I'll just be 4 or 5 minutes and I'll be with you". Or in hindsight was it 45 mins? He does indeed have a badge saying Joe and I am staying with Joe and Odette on their farm. So here I am still waiting. About to head back and check this is a different Joe who spins the same line to any solo women travellers who hand him a landing card and take his fancy. But I think this is my Joe....
Group photo thanks to Anahata Yoga Retreat, Golden Bay, New Zealand.
I more than found what I was looking for at Anahata. It was worth any unraveling that happened in my recovery to get here. It's hard to describe in words but it feels as if something deep inside me has clunked quietly into place. Something that I knew could only happen with a lot of stillness and a lot of nature. Perhaps that was connected to my desire to climb mountains. I still have that yearning to hike, to move faster, to get out of breath, the clarity that comes with physical exertion - but I found far more than that anyway. I found a kind of peace, a mental freedom, a sense of vastness. A vastness that is only matched by how rooted in the ground I feel.
My body may not do exactly what I wish it to, but my mind...can do anything.
I'm sure I could have found that stillness closer to home. But New Zealand is different. It is incredibly special. Here is a quality here, a brightness, a lightness, a freshness, a sense of space. It is one of the most healing countries I have ever been to.
I was surrounded by community at Anahata and over the course of six weeks the residents there became my family. And steadily my mobility improved. Until I was walking around without having to think about it too much. Until I was almost able to stop the constant measuring of activity that happens with CFS nearly completely. It was slow, it was steady and I became the healthiest I think I have ever been, in body and mind so far.
It happened gradually, but I kept finding myself doing more. I realised I was playing frisbee when a small group of us went on on a day out by the sea, feeling fine and able to do the short walk to get to the beach and back. I started being able to use my voice more and more regularly - to actually start singing again. I started being able to get up and dance for a song or two. A small group of us went out for the day on my birthday and I climbed the steep track through the trees from the beach and then went out to a spa and out to dinner. I lasted all day - I had all the energy I needed to enjoy every moment of it.
And I will take all of what I have experienced and learned here with me. Wherever I go. It was a myriad of practices that got me here, the community, the support from the people who became a family of friends, the luxury of not having to care for yourself in terms of food - and that food coming straight from the garden and local producers (including the pears we scrumped from the bottom of the hill). I did tiny bits of yoga that I built up, made an effort to join in the daily chanting (I know this helped to retrieve my voice). Most helpful of all was sticking to a deep sleep meditation called Yoga Nidra that happened at mid-day, 6 days a week. A 30 min Yoga Nidra is said to be the equivalent of around 2 hours’ sleep. I will now always attempt this form of deep rest during the middle of my average day.
Some of my favourite moments were walking through the forest at dawn, the light just a tiny glimmer in the sky, to find everyone preparing for a Havan, an ancient healing fire ceremony that felt remarkably powerful. And there was always work to do... I actually managed to get a bit stressed out about finishing all the sewing jobs I was given and we all helped with cleaning, looking after retreat guests and whatever else needed doing. Most residents at Anahata work incredibly hard. I was able to do what I was able to do and rest when I really needed to.
But perhaps the key thing is that I wasn’t only laser-focused on getting better while doing everything my body and mind needed to heal again - I realised I had no choice but to work on accepting things as they really were... now. Not waiting or putting myself on hold until I was able to walk and function normally again. Learning not to make a moment of this experience ‘wrong’. I think there was a little key to recovery in that realisation.
An ME/CFS Thriver