I am having adventures and definitely feel I am in the right place now. Cyclone Gita has taken large chunks out of the only road in and out of the area I need to travel to on the north-western corner of South Island. I was up with the sunrise for a combination of buses and a water taxi around Abel Tasman National Park to get here. I had to make sure I only carried my pack for about 10 seconds. And I was helped the whole way. I had a big comedown from my unplanned hitchhiking push on Friday - I have a strong feeling I'm pulling it all back together again now. I won't be doing more of that again until I feel really able to though.
I'm in Takaka now. A sleepy town in the Golden Bay area. Tomorrow I get a lift up the hill where I'll be living under canvas, totally off-grid in a retreat (with a modest amount of yoga and meditation) for a month. There's apparently no phone signal up there so I'm preparing to throw my phone out of the window and go as offline as I can for the next few weeks.
It hasn't been easy. I am still so very much better, I rarely feel actually ill. It's the energy levels, exhaustion and relative immobility that I struggle with. I'm now on my own (which is how I'm used to travelling - the best way to meet people). I've been with my family up until recently. While it's been an unforgettable time, we've all been a bit worried by how far back my mobility has slipped. And I'm surrounded by super fit walkers and backpackers, all trekking and kayaking and doing all the kinds of things I normally love.
I feel much, much better today. I arrived after the journey and even had enough energy to walk in and out of a supermarket before resting. But if I am still as physically limited as I have been these last few weeks after my time on the mountainside, I'll be ready to come home early. Travelling and not feeling able to leave where you are to get food, has happened and isn't much fun, or terribly safe. I'm not regretting a thing - I am seeing and doing amazing things, things that a year ago I never would have dreamed of being able to do... But I have to keep getting better rather than spiralling into a relapse. If not the cost of all this is too great.
I love this adventure... I think once I finally let go of the rest of the trip just over a week ago, and stopped worrying about how I was going to do this, I felt much more at peace. Only taking things a month at a time now. That seems to be the way life has taught me: emotionally and practically prepare for the worst-case scenario as best you can. Throw open the possibility of the best possible outcome too (I'm finding hope takes just as much courage to navigate as fear). Throw them both to the wind. Then do your best.
I have been a bit too tired to blog everything, but to balance out the risk of my moaning about ME all the time, here are some of the beautiful places and things I've seen, smelt and felt these last 2 weeks.
This turned out to be one of the most demanding days of the grip so far. Mostly in a great way because of how it turned out. But I'm not advocating pushing through your limits as a way to behave with ME/CFS at all. I got a bit stuck and was perhaps a bit overly tenacious (both your worst enemy and best friend in recovery, depending on how you apply it). I pushed through a wall at least a few times here, which is usually the opposite of what you're meant to do.
But it's a chance to highlight one of the most important things I am experiencing on this trip: the kindness of strangers. I'm now on my own and am in the slightly bizarre situation of being a backpacker who can't carry her own pack. And so far, I hardly have.
The other caveat before anyone gets too worried is that hitching is common practice on South Island. It's the way many people get around. It doesn't mean you shouldn't use your common sense and instincts but it is seen as a normal thing to do here. I just wasn't expecting to put it to the test so soon.
I left a place that deserves to be called Paradise, a log cabin house perched on a cliff above Lochmara, that can only be accessed by boat (I will post photos). Here's how the day started:
And here are all the people who went out of their way to help me in one day - you can find out more about them in the captions.
It's only after a few dips in Lake Tuapo that we discover we've been swimming in the crater of a giant volcano. As large as Singapore and 159m deep, apparently the original volcanic explosion was so big it left the skies dark in Europe and China. I don't quite know how they know this as the last eruption was 1,800 years ago. But somewhere, beneath the rock far below us is a bed of molten lava. There have been about 28 major eruptions in the last 26,000 years so I think we're going to be OK.
Lake Taupo has become a bit of a marker for me. I'm here with my parents, sister and her family all on holiday together. I make the best of my mobility, use a chairlift to get up a mountain, love the space, am happy being the designated driver when they head off on treks. My body is still crashing and I'm finding it so hard to manage. I feel as if I'm going crazy sometimes. I'm using a Fitbit to calculate my steps and find that ever elusive 'baseline', the amount of activity it's safe to do without pushing my body beyond its limits for recovery.
The first day we arrive I don't swim, I sit and take photos from the lake shore. The following two days, still keeping my movements down to a minimum I'm too exhausted by 4pm to make it the 5 metres or so from the car to the lake. I sit there sobbing. I just want to swim. I do make it to the shore and I do get into the water but this means my mobility is back where it was a year ago. I keep slipping backwards and it seems there's nothing I can do. I reduce my steps even further. If I move as little as I possibly can, down to about 2000 steps a day (you could easily do about 1000 steps getting ready to leave the house in the morning) and finally, I have enough energy to get from the car to the sand and swim really gently.
There's a strong cyclone from the Pacific over Auckland and it has been chucking it down. Anyway, I have people to push a wheelchair when I can get one now. And to escape the rain we spend Sunday in a museum and The Domain Wintergardens. There are always vistas to be found even if you think your world might be shrinking.
It's a short flight to Auckland.....
Where I'm met by my sister Jude and Dylan... and later find my brother in law Warren (they all live here now) and my parents. It's wonderful to be with them again.
Before I leave Australia I have a couple of days in Bondi Junction with a friend who has also been battling CFS for the last 2 years. We share copious notes. She has used even more therapeutic approaches than I have to get better (that's a lot!). I drink in being with someone who so deeply understands how this feels. I think there's a chance we both do.
I am still finding even everyday functioning quite a challenge (walking around the house, preparing food, washing clothes...). Managing CFS AND planning and organising the trip while enjoying each chapter of it as much as I can isn't easy. I chose all of this and am not complaining. I slightly question the wisdom of what I am doing in terms of my recovery. If I can't keep getting better, if I am sending my mobility backwards by travelling anywhere, let alone around the world, it genuinely isn't worth it... But so far I know I want to carry on. I know how unspeakably lucky I am to be doing this. I know that even if having such a limited daily bodily battery life upsets me... I am still better. So very much better in fact that I was able to get here at all.
My 3 weeks in Australia have felt like a flying visit, but every moment was worth it. It all feels a bit unfinished - there are people I haven't been able to say a proper goodbye to or even a hello to at all because of the CFS. Perhaps we leave many of the good things in life feeling that way. If I'm lucky enough, I'll simply have to come back. When I'm able to walk unimpeded, surf, swim fast front crawl, move around and be more sociable again.
Travelling the three or so trains tops from the Ferry terminal at Circular Quay and onto my train at central station with my luggage totally whacks me out. As the train pulls away, my body cutting out, feeling back to shot again, I start to get upset that I haven't planned this right. That I should never have attempted this journey with all of my things. I look out the window and focus on the view. I can imagine managing a life with ME/CFS isn't unlike being a parent - you start to accept that you definitely won't be able to get it right all the time. That as long as you handle things as well as you just about can, you'll still stand a chance of doing a good enough job. Just try to be good enough.
Eventually I start to at least enjoy the ride, feel the adventure as we curl along the coastline, past beaches before a bus transfer starts to bring us through NSW cattle country. While I'm not finding Oz at all cheap anymore, this journey is super affordable; all paid for in the equivalent of an Oyster card.
I'm met at Bomaderry Station by Joanne and her dad, Kev who I haven't seen in 18 years. We had an epic 2.5 month trek around South East Asia together, tracking down the village that Joanne's adopted son Anouson grew up in in a remote part of Laos. It is uncanny and more than a little momentous to be seeing them again, as if so much less time than 18 years has past. I look out from the beach house across a vast bay and white sand that crescent open in front of me as the light fades and tell my body 'You did good. That was worth it'.
But I don't completely know where my body is at. I rest and Joanne and her partner Matt make sure I get out. They even drive me the few hundred metres to the beach to make sure I have some energy for the sea (I work out a CFS friendly version of body surfing where the waves do all the work). We drive from spectacular beach to spectacular beach. Through long and winding Eucalyptus forests with frequent Kangaroo signs though it's the wrong time of day to see one alive.
The turquoise waters more than make up for not getting to a single beach in Sydney (and there are over 100 of them!). I get to look up at the huge Australian night sky full of stars and think how much I love this country. Its space, its vastness, its ocean, the dazzling light. The people I know here.
I'm leaving my cabin by the creek, a super affordable Airbnb hosted by the kindest woman and her family. Elise is a 'silverfox' model and I hope I'm half as glamorous as she is when I'm even a fraction older.
It's been a very low key few days of recovering and building up strength. It could have been much longer. I don't feel too bad at all. I feel hopeful and happy that today I head down the coast to see Joanne.
Elise's son gives me a lift down to Manly harbour, I ask a stranger to help carry my medium sized bag across the road (I'm getting better at this) where I join a large line of commuters waiting for the ferry. I ask whether this is a fast or slow ferry. It turns out the slow ferry is 40 mins wait and that this will get me there far more quickly. I stay in the queue of tanned office workers all heading to central Sydney. I start to feel a bit wobbly and worry that I'm not going to be able to sit down but we are all ordered to sit - this is a fast and unpredictable catamaran after all.
When I lived here I caught the slow ferries quite regularly, sitting out in the wind and sunshine as Sydney harbour bobbed past. This is the only time I'll get to see my favourite bit of the bay during this trip. Then I realise that no one will be allowed on deck.
And then I notice that nobody - and I really do mean almost nobody out of the few hundred people on the fast ferry - is looking up. Everyone is on their phones. I know they have a busy day to start and commute this journey every day. I know I'm just a tourist.
I get the smallest glimpse of Sydney Opera House and my favourite, the harbour bridge as we whizz past.
At Circular Quay I walk my small suitcase and small backpack to about as close to the Opera House as I feel is safe within my walking limits and say hello. I won't get a proper look. But that's OK. I remember how I used to hang around here, take photos all the time and go to the ballet.
Catching the fast ferry worked with my train connection. But I promise myself that at least in general, I will take the slow ferry whenever I can in life. And even if I can't, I'll at least make sure I keep looking up and out of the window as much as I can.
Sydney. I'm on a WhatsApp call to the UK at some unearthly hour of the morning, trying to articulate what this most recent set back feels like. I'm struggling to walk as far as the bathroom again. It's starting to feel, at this hour when it's so easy to catastrophise, pretty helpless. I'm getting more and more exhausted, whatever I do: "I was in sight of the finish line and now there's an unmovable black rock in my path". In my mind it was as dark and shiny as a mountain-sized piece of flint. "I can't get over it, around it or through it. I don't know what to do".
"So don't do anything", says the wise voice at the end of the line. And we work out that I won't catch the ferry to the Opera House to see a friend, Sebastian who I used to live with and once wrote a song about 18 years ago. I can't. As usual it's more of a realisation than a decision. I was over ambitious and over planning again. I will have to have a rest day.
While it is frustrating to be in one of my favourite cities in the world after so long and find myself hardly able to see anything, once I really accept things as they are, my situation nearly always seems to improve. And it's starting to sink in how lucky I was to have had all those months of steady progress without any sign of a real crash like this. Crashing, I'm only learning now, is an almost inevitable part of this illness.
I'm not far from the Northern Beaches, half camping in a cabin by a creek, my bed by a large window that looks out onto trees bursting with cockatoos, ancient looking lizards over a foot long called Water Dragons, possums and bush turkeys. It rains on and off and the scent that hits the eucalyptus trees in the rising heat is clean and sweet, reminding me of the very same smell in an Ethiopian childhood. I hardly leave where I am. But I rest. I am grateful to be here. And it turns into at least a few rest days.
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.
An ME/CFS Thriver