This is my 'have I really just made it all the way to Oz???!!' face. My plane had bounced down to land in a heat wave, I had been whizzed through the worst of the the tear-inducingly long immigration queues on a buggy. I'd caught the bus from the airport, walked up my old friends, Lisa and Mark's street in St Kilda's, Melbourne, found the key and crashed on the bed they had made up for me.
There is already a lot to tell you about. A visit to the beach, a refreshing sea, saving a dropped cake by newly decorating it with fresh fruit at a 5 year old's birthday party in a community garden. Hearing Mark go through all the poisonous spiders, him reassuring me that he'd never come across anything. We found a Redback spider (incredibly venomous though apparently not quite deadly) on the underside of a garden chair the next day.
A visit to Australia always feels like something of a life event it's so far away. I first arrived aged 19, after saving up for the year and travelled across the Oz coastline from Melboune up to Cape Tribulation in the north. I haven't been back since I studied film in Sydney 18 years ago.
As is the way with friends in Oz, I haven't seen Mark and his family for years. We first met at Uni in London when he was moonlighting as a chef, a film-maker, music producer and martial arts instructor. He later became a lawyer and dad when he moved to Australia. He turned out to be one of those linchpins who is responsible for so many other people I met in life. If it wasn't for him I would have been unlikely to have gone to live in Barcelona, become an angel street statue and then a professional musician. Then again, if my cousin Bart hadn't invited Mark to a Michael Franti concert, he wouldn't have met his wife Lisa from Melbourne.
What I'm struggling with at the moment is accepting - and perhaps this is a surprise because I thought I was doing better than I am - the impact of all of that flying and jet lag on a body with ME/CFS. It has started to get hard to move around the house. I will be seriously limiting my walking and swimming for as long as it takes to stabilise my activity levels again. No beach today. Not even getting to the tram stop. Perhaps I was a bit blasé about what travelling like this would really do to me. Right now I feel about as mobile as I was around April last year. I hold on to knowing that it won't take me 6 months to get back to where I was a month ago. And, perhaps I haven't really learned the lesson yet - to really be here. If I am stuck on Mark and Lisa's patio then to be here fully. I've made it all the way to bloody Oz. The sun is shining. I'm with them. I'm meant to be here.
This view of was taken a few seconds before a kind Australian dad called John offered to push my wheelchair for me. I imagine it's something people are a bit shy about asking when they see someone pushing a chair by themselves.
I wanted to see The Gardens by the Bay, jet lag and night flights were affecting my walking distance and a wheelchair was the only way to go. I just had to get over the potential comedy (and a twinge of social discomfort) of walking with a wheelchair for a tiny bit before sitting in it and pushing myself along. This is what occasional wheelchair users have to do, there are millions of us and it makes life possible.
My arms were feeling too knackered (the wheels weren't exactly spinny) and I was super grateful to be wheeled me up to the viewing platform and in and out of lifts.
And it turned around how I was feeling about these beautiful gardens. At the top I let the wheels spin and felt the warm wind and water spray as I whizzed down hill along the suspended walkway, twisting around the corners, through the orchids and cloud forest. Now I get why the wheels weren't spinny - you could pick up quite a speed going downhill.
I loved Singapore and the two days and one full night I spent there. The airport is designed to take you no more than 15 mins to walk out of from leaving your plane, the luggage carrousel moved elegantly under a row of green palm trees. After Dubai I drank in how verdant and tropical everything was. I was shattered and did as little and as much exploring as I could at the same time. Often flat out by the pool, too tired to even get in it.
I met up with the best friend of a best friend, Carrie, for cocktails on the roof and a meal in the Arabic quarter. She's lived in Sing for 10 years and I got a real feel for what the place is like. It is super clean and very safe. Most people speak English - from a typically dodgy colonial history. I spotted people taking pride in things, cleaning the sinks in public toilets, customers better arranging the items on a supermarket shelf. Some people suggest the government here is oppressively authoritarian - from Carrie's point of view, locals are more interested in the fact that the place 'works'. And it definitely feels that way.
Sometimes life with ME can feel a bit like wearing an electronic tag. And now it seems I'm travelling with it still on. On my last evening I was well over the amount of walking I should have done but needed food. If it hadn't been for the invisible limits that I (temporarily, I hope) now live with, I probably would have missed the bustling Chinese food hall hidden right by our hotel. I found the tastiest fresh coconut and a sweet couple who made me some fried fish with a hiccup inducing hot ginger stock.
Then it was into a taxi around 8pm and off to my flight to Melbourne. Yup, mobility assistance all the way. When I agreed to book it all as back up I had no idea they would turn out save the day.
First stop.... 5 nights in Dubai with two friends, Chloe and Rui who I once spent 3 years working with when we were teaching in a bunker-like staff room in South London. They're with me in the photo above with Cath (with the dark hair), who was at the same school with us and has also escaped to the Dubai sunshine.
Perhaps the fact that Dubai is the ultimate car culture was on my side? People don't seem to do a huge amount of walking anyway. I managed to get much further one day and generally got a lot stronger as I rested up from the crash. ME/CFS wasn't really much of a thing while I was here. I was brilliantly looked after. There isn't a huge amount else to report... I mostly rested on the roof with Chloe, talking about teaching, life, love, everything. I soaked up the brightness of the sky and the sun on my skin in the 23 degree winter heat. We ate really well. But here are some snapshots and brief impressions.
The creamy pink glow that marks the beginning and end of each day, the screech of car tyres in the sand, a call to prayer..
I get the impression from most people I talk to that Dubai is seen as a bit of a pit stop. A place that you inhabit to make money before getting the hell out. I have some interesting chats with taxi drivers, a Filipino nanny and go to a choir rehearsal with a few ex-pat wives (and my voice is doing pretty well).
Dubai is place full of superlatives and contradictions. It's world beatingly ostentatious while the post office runs out of stamps. The city can claim the world's tallest building, a ski slope with snowy toboggan runs in a shopping mall in the desert that keeps penguins. It's glitzy, dusty and permanently in construction. I arrived just as the government is introducing VAT. Will be interesting to see if this changes anything.
90% of the population are international and while the airport claims the world's fastest wifi, no one it seems, is able to Skype or WhatsApp (or use any other facility) to call home. While I'm there Chloe and Rui find out that Zoom, the conference calling app they've been staying one step ahead of the authorities with to talk to their families, has been blocked. One local alternative is available, only it barely works and costs a few limbs.
After the scare at Heathrow it's wheelchairs all the way for my flight out. As I'm wheeled along I start to accept that there is no way I would be able to walk this distance. Not right now. But I leave feeling good; recharged and optimistic. And in strangely familiar territory. I don't know why, though I've passed through this airport without leaving it so many times. The kind man pushing my wheels is from Kerala. Maybe I think I'm on my way back to India or something?
The irony of sitting in a London cafe and waiting 90 minutes to muster up the physical strength to walk a hundred yards into the shop to get the hiking boots I really wanted wasn't lost on me. I have the boots like a talisman now. I will need them and I will use them.
I started crashing the last couple of weeks before I left the country. It's not very surprising with Christmas and the countdown of planning and packing. The real mistake was walking far too far (for me) for three days in a row.
The reality that I would be about to embark on the longest trip of my life with ME symptoms like this occasionally loomed in the distance like clouds. It has felt disconcerting and even occasionally a little sad. But I haven't properly crashed for months now. I hope I can turn this into little more than a blip that has shown me my limits. I know how to manage things far better now. I know not to panic.
I liked the idea of setting off from our tiny local station and my parents saw me off. I couldn't tell them how grateful I was for looking after me this past year. My Mum, Catherine just smiled and said "Thank you for getting better". I got to the airport, fairly lightly packed and feeling good. Very ready for this adventure. I turned down the mobility assistance my physio has asked me to book as back up, much preferring to be free to do my own thing and walk onto the plane.
I wasn't very far past security when I truly started to dip again. To the point where I didn't feel I could move. It's a feeling of exhaustion that can leave you fighting back tears. I wolfed down some food, heard my flight to Dubai was boarding and started to look for someone in a purple fleece who could help me. I didn't find anyone on the way to the gate. I finally found the Virgin executive lounge, made my way up the slinky glass staircase and virtually collapsed in front of the attendants explaining I needed help.
A few minutes later the wheelchairs came. A single one, later an extended golf buggy, finally a row of 5 chairs all strung together controlled by one driver like a 5 year old's make believe bus. They carried my small pack onto the plane and I sunk into my seat, crying in a funny mix of relief and exhaustion as the plane took off. This thing I had been plotting and planning for months was finally happening.
The hard thing about this crash is that it has reminded me of how it used to feel all the time. Every waking moment. In fact this was how I used to wake up. This isn't that bad. I'm no longer sunk down the bottom of a well so deep the sunlight hovers somewhere, a kilometre above above you like a penny. A tiny shimmer of an ordinary life so barely, discernibly in front of you it can only feel out of reach.
It isn't such a terrible thing to be reminded of where I was, right now. I had no idea of how to get out from down there. This is how far I have come. And here I am shooting through the sky again. This has been the hardest thing I have ever done. And now I mostly just feel crazily lucky.
An ME/CFS Thriver