Roy's Peak, South Island, New Zealand by Stephanie Vella, Instagram @steph_vella.
(One of my bucket list peaks. Let's see if I make it).
I have just done the thing that makes me feel more alive, happy and excited than perhaps just about anything else could. It's my version of holding up a giant (giant) finger to ME/CFS and all that came with it. And without meaning to be trite (because it's true), at the same time doing this forces me to give this pretty merciless illness an even more gargantuan embrace of gratitude:
I've just booked a round the world ticket.
Possibly not the most sane thing to do. Especially after 2 years of being pretty much unable to work. But I'm making it happen somehow. I'll do it in a new way if I have to. Become a different type of traveller. Many of the people working with my recovery love this plan and will be able to keep supporting me remotely while I'm on the road.
In the very worst moments of this, when I was least mobile, I lay in bed or on the floor for hours, imagining myself doing all the stuff I love. I took my mind and imaginary body to the great outdoors. To the places where nature is at its biggest. I am convinced that feeling my body climb, run, jump and swim every day is part of what has got me this far. I breathed in the thin air. Felt the shocks of cold water as I dived in. Floated in warm sea salt. Lay under constellations of less familiar stars.
Then, last May, in a Skoda showroom while a car was being repaired, my sister broke the news that she was moving her family to New Zealand. My head throbbed and the world wobbled at that point (it still does sometimes). Back then walking for any longer than a few minutes was a challenge. But I started matching all those imaginings with my dream route to go and find her out there.... and then I started to imagine my way home...
And well... it kept becoming more and more real. Using a zippy mobility scooter inspired me, thinking I could go anywhere in this thing. I thought of the friends all over the world who I hadn't seen in a very long time. I started getting in touch. This trip is about reuniting with them (I lived and studied in Sydney once, a couple of those friends have scattered even further). Until I found myself sat in a travel agents pulling dates and places out of the air. My bodily and financial heebie-jeebies screaming what am I doing???!! I kept editing out counties partly for my immune system but also for simplicity's sake, because I must avoid getting too tired if I ever can. I'll let the route pop up as a surprise for you as we go along, but I'll be spending at least a month living off-grid, half way up a remote New Zealand mountainside on South Island.
This trip is about where nature and healing meet. It's about life being too short to not get out there and see as many rocks, mountains, lakes and blades of grass as I possibly can. My physio targets are now mountains I may or may not climb. But I know I can now walk enough of a distance to do this. And I trust myself to manage things sensibly. I have to be ok with only getting to the foot of a peak and not being able to start, let alone get up it. I will have to have the will power to know that feeling that I shouldn't, that I can't isn't a can't of limitation. In this case it is often the can't of getting better. I know that I can rarely control the timing. But I will climb those mountains one day, this trip or not.
I have done a lot of travelling in my life and a lot of it was seeking. I have nothing to seek anymore. I have nothing to run away from (try running away from ME/CFS: you definitely won't!). I could spend the winter getting better here in the UK. Or I could do this.
So let's do this.
This is me just after being discharged from my physio. It doesn't mean it's over (quite yet). More of a 'you know what you're doing. You're on your own now'. There have been lots of dips this month and sometimes we forget how far we've come. Wheelchairs and scooters have enabled me to do all sorts of things but no more wheels. Huge thanks to my physio Jenny and Bart's Hospital CFS service which is in the process of being cut out of existence. This physio was crucial.
An ME/CFS Thriver