Melbourne and the months before

AustraliaCanberraLifeME/CFSMelbourne

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I just got back from spending a week in Melbourne, and I’ve had the Easter long weekend to rest and recover from the trip — in theory. It’s been good, but I’ve already started feeling worried about all the work I have waiting for me though, so the holiday vibe is kind of already gone. But it has been so nice to take a break.

The Melbourne trip was much-needed. I was going stir crazy as I hadn’t been anywhere besides my hometown in so depressingly long, and am just ‘over’ work at the moment. The main reason I was there was for a wedding of a dear friend (all weddings are special, but same-sex marriages seem imbued with a particular joy, the ‘finally’ moment, the culmination of all the extra effort and emotion from the fight for equality). The brides were beautiful, the wedding happy and joyous, and it was great to catch up with people.

Our beautiful brides!!!

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I was pretty damn exhausted by the time I got to Melbourne though, and probably should have taken some leave before travelling so I didn’t have to rest quite as much while I was there. I haven’t blogged since my summer break, because as usual, the first few months of the year were consumed fully by organising our annual mega-conference. It went really well and was a resounding success, but was draining. There are always parts of it that I really enjoy, and this year an exhibition we hosted by Nick Danziger was a particular highlight, as well as catching up with people when I had a chance. We were more organised than ever before, we tried to plan so I didn’t end up as crushed as last year, and to some extent I don’t think I did… but crushed is still crushed. I got to the end of it feeling proud of the achievement and how it all went, but extremely tired and burnt out. I still feel burnt out seven weeks later, but it’s hard to measure really because ME/CFS is pretty much the feeling of being constantly burnt out, and never truly refreshed no matter what measures you take. Our apartment flooding after the conference in a big storm, and my hurting my back before the conference so I was hobbling around with a walking stick for a week, probably didn’t help much either though.

At the conference closing drinks.

But I think part of it was that as soon as the conference was done, I ended up needing to take on parts of a big project due to a staff departure. The parts are essentially more admin. All I do now is admin and I feel like my brain is atrophying. I find it hard to write, hard to find time or energy to read (even while on break), and I worry that if I don’t ‘use it’ I will ‘lose it’, like everything else this illness has taken from me. I find myself feeling depressed while slogging through admin, thinking to myself ‘I’m smart enough to be an academic, so why am I just being an administrator?’. I get frustrated when other people’s disorganisation creates more work for me, because it feels like blatant theft of my limited resources. And I also have so many things that I’m supposed to be keeping an eye on, or keeping up to date, etc that I am constantly behind no matter how hard I hustle.

So I don’t really know what to do about my career. On the one hand, I have a supportive workplace where I believe in the mission and feel like I’ve made a good contribution, on the other, it is probably time to do something new, but finding something that could work with this stupid illness is hard and every possible leap seems to hold risk of failure or escalating symptoms. Even in a sector that preaches accessibility, it seems that it is more the ramps and interpreter kind, not the flexible part-time work while still being in a mid-level to senior role (and being able to still pay your rent) kind. Or the kind where you take most of your meetings on Skype instead of hiking around Parliament all day or flying interstate all the time.

So with all this in mind, I was thinking “could I move?” when I was in Melbourne. I didn’t really come back wanting to, as much as Melbourne is a great city, infinitely better than Sydney in its current state. Yes, I took the tram and trains and Uber, and I could manage, but it is more tiring to get around. Yes, there’s more to do (and eat), but I barely had enough energy while there on holiday to do that much, let alone if I was balancing work and commuting. Everyone seemed to be in competition on how busy they are, which happens here too, but it seemed more pointed in the city. I don’t think my life would improve by being there. Canberra isn’t the problem, ME/CFS is.

So I guess that’s one thing I know? If I had a savings buffer instead of debt maybe I’d go live in Bali and freelance or something, because it’s clear now that access to Australia’s medical system isn’t doing anything for me anyway. But unfortunately I need to earn a proper income, because even with that it is paycheck-to-paycheck.

The problem with staying still is that I am feeling increasingly isolated with this illness. The initial drama of it all has gone so it’s just slow-burn stagnation. Other people are living their lives, moving on, coupling up, kidding up, dogging up, and I’m just stuck. When I was younger, I would fix such problems by moving city or country, or changing jobs. But now that is not so easy.

So the Melbourne trip was nice and I enjoyed it. I really needed to get out of the office and out of town. I really needed to do some social things. But did time away from work and the Can turn on any great big-picture lightbulb on what the hell I should do with my miserable self? Unfortunately, no. It’s just back to the same old and I’m still trying to figure out a way forward.

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