Checking out one of #canberra 's newest trendster locales, AKIBA. Already impressed by the very personalized service!

Fancy hipster restaurants of Canberra (plus those food trucks)

Going out for a nice dinner every now and then with some friends is one of the things that has been keeping me emotionally afloat lately! My strict diet from last year has relaxed simply due to being too tired to deal with it in the last few months (though I need to get back on it as with basically no physical activity, the weight is creeping back even while still eating healthy 90 per cent of the time… another frustration…), but at least taking a break from my calorie counting app means I don’t feel too bad about eating out every now and then! Before it would wrack me with pangs of guilt as I tried to estimate the calories in obscure menu items. Dinners are also manageable with my day-to-day fatigue, as long as I plan/rest in advance, and am not having an especially bad day. My friends must be commended for not only being awesome in so many ways, but also for acquiescing to ridiculously early dinners so that I don’t flake out before we get to dessert. You have a space at 6.15pm for dinner? Yes please, book us in! 8.30pm, sorry that’s far too late. Tragic!

Anyway, I’ve tried out two places lately that I would rave about — Akiba and Eighty Six.

Eighty Six in Braddon has been around for a while, but I went there for the first time last night. It is a great space, with the music adding to the buzzing atmosphere, and our server was really friendly and helpful. My ‘Jessica Rabbit’ cocktail was pretty great, great enough to order a second round! Though one of my friends tried a cocktail with mescal which was a bit overpoweringly smokey for all our likings — I’ve had mescal before, but I must have had a cheap and mild version that was way less smokey, as this was full on. All the food we ordered was fantastic —  the duck buns, Asian-style steak tartare and pulled pork terrine. The blackened chicken with buttermilk slaw was the winner of the night though, so tasty! The chicken was beautifully cooked and the marinade was perfect– spicy but not overpowering. We also had the banoffie pie and caramel popcorn sundae for dessert — the banoffie pie was to die for, so good! The sundae was also great, but the pie was definitely the winner of the two desserts. The desserts were quite intense, definitely for sharing. As with basically every restaurant in Canberra these days, the whole set up was a share-plate type arrangement. I would definitely go back again, and I just saw on their Facebook page that they do Sunday brunches, which I didn’t know about but would be very keen to try! My one comment would be that there didn’t seem to be a lot of options for vegetarians.

Eightysix on Urbanspoon

Akiba in Civic opened towards the end of last year (pictured up top), and I’ve been twice in the last couple of months. It was great both times — very attentive service, a great cocktail, beer and cider list, and above all else, fantastic food! It is another buzzing, well designed space. It even impressed visiting Melbournian friends, so that’s always a good sign. There is lots of attention to detail in the cocktails, and also with the food, which has an Asian fusion bent (though predominantly Japanese influence). From the various things I have tried there, I would recommend everything, but especially: the kingfish sashimi with coconut, nam jim and coriander; shitakke and water chestnut dumplings; the beef short rib; the soy cured salmon belly; both the pork belly and soft shell crab buns; and the kimchi & angasi pancake. I’ve also had the fried rice and soba noodle salad, and they were both very good, just not highlights like those other dishes. I’ve also tasted or drank the Clover Club, Spiced Rum Sour and Fukushima Zombie cocktails and they are all thumbs up good. The $45 ‘feed me’ option is good for groups who can’t decide what to order. They are also doing yum cha on the weekends, which I’d be keen to try out.

Akiba on Urbanspoon

(I also went to Monster in New Acton at the end of last year, which is in a similar price point/share plate/quality/hipsterness/design level — we really enjoyed it, but it was too long ago for me to write any kind of more detailed review–keen to go back sometime soon though!).

Now on to the other end of the hipster food spectrum, the food trucks….

IMG_4351

IMG_4349

I recently checked out the food truck hub on Lonsdale Street in Braddon called The Hamlet. It’s a cool concept (though as the weather gets cooler, tempting people outdoors might be a challenge–I think it is only going to be a temporary set up though before the block gets redeveloped for apartments, though it also doesn’t look tooooo temporary, so might be around for a while). All the food that our group tried was enjoyed — I had a hotdog from Broddog (the Broddog itself, though there are heaps of other options), which was very tasty though not a cheap snack (It made me think, I don’t think I have actually eaten a hot dog since I was living in the US nearly five years ago!), and an old school milkshake from April’s Caravan, which was also yum (my god though… $7-$9 for a milkshake, that right there is Canberra hipster pricing). There’s also a pizza shop in there, a place doing spit roast rolls, a Peruvian street food place, an Indian street food place, a place selling pies, a place selling coffee. And you can buy some beers at the bottlo across the road and bring them across to enjoy with your meal, which is great. So it’s a good place for very casual dining with friends. It also gives that food festival vibe the whole year around, which Canberrans love, though there are a lot of ‘meat on bread’ type foods so it would be good to see more of a mix.

IMG_4348_2

IMG_4350_2

 

Some other Bali photos

Just some miscellaneous Bali instagrams to round off my set of Bali posts. I flew out the day before Nyepi, as I’ve stayed in Bali for Nyepi in the past, so I didn’t see the ogoh-ogoh parades and needed to get back to Australia to try to rest for a couple of days before going back to work, but we did see some of the preparations, including a street party outside a local temple one night.

Untitled

IMG_4259_2

IMG_4275_2

 

Beautiful kebaya

IMG_4303

IMG_4299

 

And there’s also a couple of very short videos of the dancing and gamelan.

 

 

And now some more miscellaneous Bali photos:

IMG_4156_2

IMG_4159_2

IMG_4198_2

IMG_4206_2

IMG_3807

IMG_3798_2

IMG_3788_2

IMG_3789_2

IMG_3781_2

IMG_4232_2

 

And that’s it from my post-holiday Bali blogging. I’m wishing and hoping that I can go on a trip overseas again soon! I’m still sad that backpacking though India/Nepal seems out of the question for a while now, which was what I had planned for this year, but maybe I can manage somewhere easier like Japan once I am more recovered (fingers crossed) and less broke (fingers crossed).

Refreshment from the heat. Acai and chia is everywhere here, natch.

Some other places that we ate

So as I have mentioned, I didn’t do anything on my holiday in Bali except make sure that the places we went to for breakfast, lunch and dinner were excellent. That goal was achieved.

At the hotel we stayed at in Sanur, the traditional ‘mid range hotel included breakfast’ was on offer. Sweet white bread, a sad looking omelette, some super salty mie goreng and some fried bananas. That was the only culinary lowlight of the trip.

So here’s the other places we visited that were great in Bali (Seminyak, Ubud, Sanur).

1. Revolver Espresso, Seminyak

Perfect place to curl up in a corner with a coffee and a book (I was reading Indonesia Etc, I wrote a quick review over here. I also read Purple Hibiscus by Chimamanda Ngozi Adichie, another excellent book from one of my favourite authors) or to catch up on emails with the free WiFi. Revolver bills itself as a coffee specialist, and the coffee was really good. I also got breakfast here twice and it was affordable and yum (I had the ‘Bang Bang’ fruit, yoghurt and granola one day and the ‘AK 47′ eggs with salsa on sourdough another day). The small space fills up pretty quickly around ‘people on holiday breakfast time’ i.e. 10-11am, so I’d recommend getting here a bit earlier, which is what I did. They also have another small shop around the Petitinget/Batu Belig area.

IMG_3967_2

IMG_3973

IMG_3970

 

IMG_4313_2

2. Petitenget, Seminyak

I’ve been here before, and it is still great for a high quality, good value, relaxed European lunch.

IMG_4003_2

IMG_4002

3. Seniman Coffee Studio, Ubud

We came here for a quick coffee and breakfast after arriving in Ubud. Our driver for the day was challenging to say the least (he disappeared halfway through the day as we went for a walk around the block and ‘didn’t tell him’ and my sister and I were actually relieved, even though it put us out of pocket! He also made romantic advances on me, and when they were rebuffed, decided to try them out on sister… super awkward and tiring, and disingenuous, when I wasn’t feeling energetic anyway. I had forgot that annoying feeling of someone trying to hit on you so clearly for visa/economic reasons, it’s just icky). So our Ubud day was somewhat tainted by that. I was just too tired to put up with the BS. Anyway, he basically refused to take me to this coffee shop, alleging that it was owned by foreigners and I should go to the Kopi Luwak tourist trap that he would clearly get a kickback from for taking us to. (He also told my sister she shouldn’t go to class at the Yoga Barn for the same reason and that he could teach her instead…). So I had to fight with him to come here.

To be honest, after the battle royale with the driver I was in a pretty bad mood. It was good though, the coffee was very nice, and like Anomoli they showcase Indonesian beans. The way they presented the coffees on boards with a glass of water and a little rice cake was a nice twist. (My coffee was iced, that’s why it was in a jar — hot coffees were in cups)

We ended up in a kind of overflow space downstairs that wasn’t very atmospheric though, as this place is really popular, and the seating down there wasn’t comfortable. The main area looked much nicer. It’s very close to the heart of Ubud and the market etc, so it is little wonder it has many fans. They also run a cold brew bar in the afternoons and evenings.

The cafe’s motto made me laugh though: ‘imagine you know what you are doing’. Hmm yes I can only imagine that. It suited my current malaise.

IMG_4173_2

IMG_4163_2

 

IMG_4175

4. Anomoli Ubud

Since I was pretty tired on our Ubud day trip, I didn’t walk far before needing to sit down again, so I stopped in at Anomoli. A reliable favourite for coffee fans in Indonesia, this was my first time to their Ubud outlet. It’s conveniently located, a big space, and the drinks are reliably good. They also sell their beans and other coffee paraphernalia, continuing the very good cause of promoting Indonesia’s coffee culture and the diverse varieties available from across the archipelago. I was a bit surprised that the Ubud store had more of a Starbucks set up rather than table service, but maybe I’m remembering the Seminyak and Jakarta set ups wrong. Definitely far better quality than Starbucks!

IMG_4184_2

 

5. Ibu Oka’s

I’ve been here multiple times before, but Britt was yet to have traditional babi guling, so off we went. It was very tasty as usual, though I was a bit disappointed that they had renovated their store near Ubud Palace and it no longer had the lesehan (sitting on the floor) style tables and the kind of jumbled and random outdoor seating it used to have! It was all a bit too bland now for my liking, I preferred the old chaos that made it feel more like a proper warung. But it seems they have expanded and have more seating out the back now. Still a reliable babi guling option though.

IMG_4213_2

IMG_4212

6. Taco beach, Seminyak 

Another option I have had before, that we found ourselves near just before Britt had to fly back to JKT.  The babi guling tacos are still tasty, though I have to say Motel Mexicola was definitely more impressive (but pricier too).

IMG_4265

 7. Warung Kolega, Seminyak

This was the warung lunch I had been dreaming of. I actually made the ill-advised decision (considering my current health problems) to trek 1km here in the midday heat carrying all my luggage after checking out but before going to the airport. I think it probably contributed to my post-holiday fatigue crash. But I am pretty sure it was worth it? I wanted to eat everything they had in the display case. Definitely recommend for those looking for a warung in the Seminyak area (one of my other favourites is Warung Melati, which is closer to Legian).

IMG_4310_2

8. Warung Aneka Rasa, Seminyak

This warung is conveniently located amid the fancy restaurants and boutiques of Jl Laksmana in Seminyak, but is super cheap so great if you have been spending too much cash. By late dinner time, when I managed to stumble down there to eat, there weren’t a huge amount of choices, so perhaps don’t leave it too late in the day, but it was still a good cheap option in a very convenient location.

IMG_4271_2

9. Grocer and Grind Sanur

I’ve been to Grocer and Grind in Seminyak before, a few years ago, and I didn’t really rate it. But we had a great breakfast at Grocer and Grind in Sanur, the perfect breakfast for me to recover after my friend’s wedding. It’s a great space as well.

IMG_3868_2

IMG_3865_2

IMG_3866_2

10. Manik Organik Sanur

Bali’s preoccupation with organic restaurants can only be a good thing. There was no shortage of chia seeds here (though we did overhear an Australian woman pronounce it as chaiiii seeds — chai is not quite the same). We got a great, clean and healthy veggie nasi campur here and some nice smoothies and juices. It was a nice space as well.

IMG_3808_2

 

(fierce Instagramming was a hallmark of the trip…)

IMG_3810

11. Best meal of the trip – Merah Putih restaurant, Seminyak

We sort of ended up here by accident. It’s quite high-end, and you should usually book, but they found some space for us. I didn’t take any photos, but check out their website. Wow. It’s an amazing building, with stunning high ceilings. But the food was even better. It offers Indonesian fine dining, adding contemporary twists to local classics and showcasing a cuisine that I have always argued has been totally underrated and underappreciated. It’s great to see it given some reverence, as well as an injection of creativity. All the food we ordered was fantastic. The duck rendang was great, as was the perkedel kepiting, Aceh cured Yellowfin tuna and tahu isi terong. The drinks were also very good, there was a sound cocktail list and also refreshing non-alcoholic drinks like infused iced teas. If you come here, you definitely need to have dessert. Britt had the ‘madu’, a cornetto icecream made with Borneo honey with chocolate, coffee and ginger, and I had the ‘kelapa’, which was ‘es teler’ fried ice cream in coconut milk with calamansi and melon. Both of the desserts were so good! Definitely a great place for a fancy dinner.

 

OK, that’s it. I think I have basically posted about every place we ate now!

 

IMG_3897

Why you should consider airbnb for Bali

Finding accommodation in Bali… well, there’s no shortage. It’s actually almost overwhleming. After trawling through Agoda to find accommodation in Sanur near the wedding I was attending, I was already over it. How to know which pool lives up to the photos, which ‘walking distance to attractions’ claim is most accurate? I finally found a place that was close to the beach and the wedding, was reasonably priced and had a nice looking pool and booked it.

Then I started looking in Seminyak. So. many. places. I didn’t want to stay in a big hotel, but wanted to be close to the action in Seminyak because my energy levels were low. A pool was non-negotiable. But most villas were out of our price range. And some of the bigger resort-type mid-range hotels in Seminyak looked a bit concerning to me (in that I was worried about what the other guests might be like…).

I finally looked on airbnb, out of curiosity. I’m so glad I did! We ended up staying here, and it was great. My sister and I each got our own bedroom and bathroom. It was a short walk or taxi to the main areas of Seminyak. And we got our own private pool in a beautiful garden. There was an open-air living area with a full kitchen. The one downside was a bit of traffic noise during the day, and some nearby construction, but the noise wasn’t a problem at night. We loved it. And the separate rooms meant that we could also do our own thing after sharing a room at the other hotel for the first few days (and I could nap as much as I liked). It felt like a home for the four days we were there, which was a lovely decadent feeling.

So even though Bali is flush with accommodation options, airbnb is definitely another option worth considering.

IMG_3918 IMG_3915_2 IMG_3920_2 IMG_3919_2

 

IMG_3939

Sisterfields

Next on the list of great places to eat in Seminyak — Sisterfields. We had lunch here and some coffee. The brunch menu looked great, as did the salads on display. I loved the decor and wanted to steal/find out the supplier of their chairs for whenever I am rich and can curate some sort of beautifully designed home. My lunch was amazing — the Thai glazed 18 hour pork belly with salad. My sister’s lamb mezze platter was also fabulous. And the coffee was very tasty. Definitely recommend! I wanted to come back here again on my last day but they were closed ahead of Nyepi. Next time. It was buzzing when we were there, you might need to wait for a table during busy times.

 

IMG_3931_2 IMG_3927_2 IMG_3936

Motel Mexicola

One of the newer entrants to the Seminyak nightlife and dining scene, Motel Mexicola is very popular and it’s easy to see why. Firstly, it’s very cool, down to the finest details, with bombastic decor. It was clearly some sort of trashy old nightclub or hotel restaurant that they have turned into a handpainted, muralled Mexico-inspired colour explosion. My cameraphone photos at night were pretty poor and didn’t show it well, but there’s some better photos on other blogs herehere, here. This place is so vibrant, splashed with deliberate hipster quirk and nighttime neon. I really loved the design and decor, but there were some features that also made me roll my eyes a bit as well. For example, on the night we went, there was a shirtless man inside a glass display cabinet in the middle of the restaurant making a surfboard by hand. Seriously. When I finally realised what was going on with that, I wanted to go ‘oh, that’s cool’ but found myself thinking ‘oh, hipsters, too much’. Also it looked like a hot, crowded and uncomfortable environment in which to practice his craft, the nanna in me was concerned about the occupational health and safety issues…

The other people there weren’t 29-year-old nannas. The music was fun and upbeat Latin American–and by the time it was my bedtime (…around 9.30pm) there were already some people having a dance. We were seated at the bar and got great service. I wasn’t drinking (just got a giant iced coconut to sip away at, for hydration and the miracle health benefits of coconut water, right?), but my sister tried some other drinks and they were all very nice. Unusually for bar seats, we weren’t perched on stools, but instead had these fabulous wrought-iron armchairs to sit in, which was great (I have noted that bar stool seating depletes my energy much faster than regular chairs!).

If you aren’t drawn by hipster quirk, Instagram opportunities, dancing and booze, then the real highlight was the food! Every dish we ordered was delicious, we especially loved the empanadas. There’s a great mix of snacky-type food and larger meals, so it works for those wanting a full dinner or just bar nibbles. A great range of tacos too.

All in all, if you are in Seminyak and in need of a bit of a fiesta or a feed, then Motel Mexicola is a good place to check in. Just be prepared for noise, colour, caged artisans and hipsters.

IMG_3958 IMG_3948 IMG_3954 IMG_3959_2

My latest batik sarong acquisition. Just a printed one, but liked the colours.

Pacing and post-holiday punishment

I spoke too soon after getting through my holiday without a fatigue crash–it just came with a delay. I went to work on Monday just fine, but then on Monday night things started to go downhill. I was debilitated for several days. Really horrible. On the worst day, I couldn’t even sit up in bed without feeling like I was going to collapse, couldn’t look at a screen and any noise made the dizziness worse. Even rolling over in bed was an effort, but I had to because of all the weird nerve sensations, pains and numbness that comes on when I’m having a fatigue crash/bad day. Standing was even worse, I only did it to get food and water and to pee. It’s so frustrating–when I came back I was feeling so happy that I could manage to travel, even in a lazy way, and I was feeling clearheaded and mentally refreshed, but then bam! The punishment. It’s hard to hold on to my good holiday vibes after that. And it seems like the fatigue punishes me most severely for doing things I enjoy or most want to do.

I’m now seeing an exercise physiologist to work on one of the only available forms of treatment for this mess — pacing. Pacing is basically doing barely anything so you don’t overexert yourself and have a crash. It’s tedious and frankly it is laughable that it is considered a ‘treatment’–it’s like telling someone with asthma not to climb stairs or jog instead of actually treating their condition. Right now, I’m not supposed to walk more than 2500 steps a day–which is nothing. It’s 3.30pm and I’ve already gone over that, and all I’ve done all day was put out the garbage (which I hadn’t done for days thanks to my massive crash, so gross), go to the loo a couple of times and grab a couple of essentials from Woolworths. Am I supposed to teleport myself to the kitchen to get dinner now? How am I supposed to clean my flat? Do my laundry? The theory goes that on a better day I’m only supposed to do what I can manage on a crap day (i.e. basically nothing) in order to try to reduce the risk of triggering a crash. Frankly, all days seem like bad days if I can’t live my life and do what I want. But it seems I have no choice in this and no other real treatment options.

I’m just so frustrated and disappointed right now, and still feeling pretty crappy post-crash. Will try to write some more posts up about Bali as an antidote. I feel a bit weird that my blog that used to just be travelogue-type stuff is now so much about my health, but writing when I can helps. And it doesn’t use my step count.

(random photo at top of post is my latest batik sarong procurement–it’s just printed, but I liked the colours)

Sea Circus, Seminyak

Sea Circus is just one of the adorable cafe/restaurants that has popped up in Seminyak in recent years. A burst of bright colour capturing the fun of a seaside holiday, a playful and fresh menu, and good coffee. Indonesia does these cafes so well and so much more affordably than here in Oz. I got back to the office today and one of my colleagues who followed my Instagram on this trip remarked on how hipster Bali looked from my photos… Indonesia truly is a strong competitor on the hipster cafe front, particularly in the cutesy hipster subcategory. (also, as I mentioned earlier, I basically did nothing on this holiday except read in hipster cafes and read next to swimming pools ).

We went to Sea Circus for breakfast. I had a quinoa and chia coconut porridge with grilled banana and pistachios. My sister had the muesli topped with raspberries and yummy honey and basil yoghurt.

A nice little touch was the dose of wisdom doled out with each coffee. A sweet way to start the day, no sugar required.

Here’s some pics.

IMG_4248_2 IMG_4247_2 IMG_4256_2 IMG_4236 IMG_3985 IMG_3989

 

Potatohead #latergram

Potatohead Bali

No lounging-around-in-Seminyak trip would be complete without sunset drinks at Potatohead Beach Club. I have to admit, this was my first time there! Last time I went to Bali, we opted for KuDeTa for our sunset drinking requirements, and Potatohead’s Bali outfit wasn’t around the time before that (they’ve been in Jakarta for longer, and I remember knocking back some fab cocktails at their Pacific Place restaurant in my last week in Jakarta in 2010).

It was pretty fabulous. My sister and I had a couple of cocktails each and some appetizers, then hit the gorgeous infinity pool to lap up the sunset over the sea. My earl grey-based cocktail, which was ice cold but came in a steaming teapot (dry ice creativity) was definitely the winning drink of the night, but there weren’t any disappointments on the plate, in the glass, or in the pool. And the sunset delivered as well.

Tons of photos follow. (After two cocktails I felt like it was OK to take my iPhone into the pool since everyone else was! Thankfully there were no disasters!)

IMG_4008_2 IMG_4019 IMG_4025 IMG_4034 IMG_4037_2 IMG_4046_2
IMG_4027 IMG_4050_2 IMG_4069 IMG_4068_2 IMG_4067_2 IMG_4072_2 IMG_4315 IMG_4103_2 IMG_4144 IMG_4142 IMG_4143_2 IMG_4099

#sanur #bali

Back from Bali

Just got back from spending a week in Bali. It was nice. Because I have been to Bali so many times before, I actually couldn’t be bothered to do anything vaguely cultural or adventurous, so I just spent the whole week eating delicious food, drinking coffees and green juices, lounging around by swimming pools, reading, napping, getting massages and other unnecessary beauty treatments like cream baths and mani/pedis, walking around a bit to shops and to the beach when I could stand the heat… and that’s about it. Really. That’s pretty much all I did. My little sister came over from Jakarta, where she is living a very suburban existence studying out in Depok, very different to my expat life in central Jakarta (i.e. she lives in an all-female kost that has a 10pm curfew and no hot water), and she lapped up a week of hot showers, cocktails and all the ‘Australianess’ that pervades Bali (i.e. yoga classes, hip boutiques and yuppie cafes–obviously we steered clear of the Australianess that can be found in Kuta/Legian), so it was also nice to hang out with her. Once she went back to Jakarta though I lapped up all the warung food that I desperately miss but that she was not so interested in!

IMG_3858

(Many Indonesians were confused about the age gap between us, because they could tell we are related but weren’t sure how. Some thought I was my sister’s mother, which made me feel pretty old! I tried not to take it to heart, since when I first moved to Indonesia some people would ask me if I was in high school and other people would ask me how many children I had… one man asked me once whether I was 30 or 40… I was 23!)

The one big thing that I did do besides lounge around was attend the wedding of my friends Ange and Martin. It was a beautiful day, and a real joy to attend. They are such a lovely couple, and Ange has been such a good friend over the years, always a source of guru-like wisdom during my time in Jakarta, always at the ready for a cocktail and a robust conversation, never one to shy away from an argument. She’s someone whose tenacity to succeed as a journalist, to chase important stories and to really understand Indonesia I have always admired. I not only got the joy of seeing Ange and Martin tie the knot (at the gorgeous Villa Batujimbar in Sanur, which has hosted an array of celebrities over the years), it was also an opportunity to catch up with some old friends from Jakarta, who are all doing very interesting things. So that was a rather special day.

These two!

Untitled

IMG_3819

My fatigue held up OK, largely thanks to a schedule of naps and ‘naps under the guise of doing something else’ (i.e. massage naps, floating in pool naps). I had to drink a lot of pocari sweat and coconut water to avoid feeling too dizzy and I definitely couldn’t stay out in the heat for long, but that was fine. The flights were pretty tiring, especially the overnight flight back I had with a long stopover in Melbourne–still recovering from that one two days later, my body did not appreciate sleeping on the airport floor (when I was backpacking in Europe I used to book flights so I could sleep at the airport and save money on accommodation! Not so anymore!). But I wore compression tights and made efforts to stay really hydrated during the flights, which I think helped reduce my problems like leg pain and the orthostatic intolerance. I had major jelly legs when I got off the planes, but it was OK after a bit and thankfully I got through immigration very quickly on both ends of the flight. It is a bit of a relief to know that I can fly without major problems–I was kind of anxious about how the flights would go, but it was better than I expected, so phew!

So it was a nice holiday. I think it gave me some things that I really needed after a rocky few months. While I don’t perhaps feel physically refreshed by it, it was a good chance to clear my head. And I think things are slowly improving with my sickness thankfully, I definitely don’t feel as rotten as I did earlier this year, and am having fewer episodes of absolutely crushing fatigue, so hopefully the next trip I can take overseas will be a bit less lazy and a bit more adventurous!

It has a name.

So, they’ve finally gone and stuck a name on this illness of mine– Chronic Fatigue Syndrome (CFS). I’ve got mixed feelings about this. I had still been hoping it would be uncovered as some sort of malady that they could just give me a pill for, and ta-dah, suddenly I’d be better and be able to plan my life again. Now there’s no end in sight, and no more certainty. On the other hand, at least it’s not something life-threatening and hopefully not life-destroying… though at the moment I feel like my career aspirations are being slashed with a box cutter thanks to this. How can I do international development work if I can’t travel to tough places? How can I do a PhD if I can’t concentrate as well as I could before and can’t work a bajillion hours a week?

But when you try to find out more information about CFS, that’s when it gets really depressing… you uncover all kinds of horror stories, message boards filled with desperation, and blog posts that err on the conspiratorial. People who’ve had to stop working, people who need full-time care. It’s a sinkhole of suffering. Part of me doesn’t even want to identify with all of this–I think I am still not really accepting the title. I tried saying the sentence ‘I have chronic fatigue syndrome’, and it sounded like a lie, as absurd as saying ‘I am BFFs with Beyonce’.

And then there’s just the lack of clear information on what to do. I’ve been referred for Graded Exercise Therapy… some studies have shown some benefit, other studies have shown it can make CFS worse.  And part of me feels like all the exercise I did last year exacerbated this. I had been going to doctors since May last year saying I was tired, and they just kept telling me to diet very restrictively and exercise all the time and lose weight. The harder I tried to do the right thing and the more weight I lost, the worse the fatigue became. When I went back to the doctors to say the fatigue was worse, they told me to lose more weight to fix it. It was only when things got really bad in November and I changed doctor that this line finally stopped being thrown at me. But the specialist who confirmed the CFS diagnosis this week also told me to lose weight–it’s exasperating. I don’t want to be huge. I have wanted to lose weight my whole life. But because of the PCOS, the only way the weight comes off is crazy amounts of exercise. Which seemed to get me into this CFS hole. So it just seems like a Catch 22. Then doctors recommend things like Optislim… well I have to say that living off an 800 calorie a day liquid diet doesn’t seem appealing right now when I already have no energy.

And as I deny, deny, deny in my mind that this is going to be an ongoing problem, my body keeps slapping me with cold hard reality. For example, last night I went out for dinner with friends who were passing through town for one night only, and are about to head off overseas. Even after resting from my short work day, I only lasted until 9.30pm. And perching on the hipster barstool made my legs go to jelly. Then today, I felt really tired, dizzy and had aches and pains all in my back from perching on that barstool without any lumbar support for just a couple of hours. So while I can’t bring myself to say it out loud, all signs point to chronic fatigue syndrome, and there isn’t going to be a magic fix. Which is a very hard pill to swallow.

6103561765_955c634070_b

Get behind a cause I really care about

I know most of my blogs lately have been whinging about being sick. It’s safe to say it has been a pretty rocky year on the health front.

But besides all that, other good things have been happening behind the scenes.

Through my work, I have been helping out Femili PNG, a Papua New Guinean NGO that runs a Case Management Centre (CMC) in Lae to support survivors of family and sexual violence (FSV). There’s heaps of info about the work it does on its website. My role has been very minor, but I have been proud to be involved in some small way as the CMC began operations in July last year, and has now worked with more than 160 clients. It’s exciting to see this new model become one that is increasingly being seen as something that could really provide hope for the women and children in PNG who have been affected by the country’s extreme levels of gender-based violence. A number of clients have already been supported to find lasting solutions to the violence they have endured, in many cases for years.

All of the clients have survived horrific ordeals. Hearing what they have endured, one can’t help but be moved and shocked, even with the distance that comes from sitting in an office in Canberra hearing the stories over a crackly teleconference line. Hearing the way the Papua New Guinean staff of Femili PNG undertake a high-risk, difficult job in order to support survivors is also inspiring.

Continue reading…

Overwhelmed

Still no answers on the mystery illness.  More tests, more specialist appointments, more insinuations that it is in my head. That’s about it. Every test comes back saying I’m the picture of perfect health, while I’ve never felt so unwell in my life. I’m thankful that I now have a very understanding GP, who seems to actually somewhat ‘get’ who I am as a person rather than jumping to sweeping conclusions, so that is helpful. I also experimented with removing a medication I was taking in case it was the cause, but it hasn’t really had an effect.

Perhaps the worst part of this now is that I just feel completely overwhelmed, nearly all the time. Even if I am not feeling overwhelmed on a particular day, the smallest things can tip me over–like an additional, surprise request. Or criticism–it’s harder for me to take because I am trying so hard, and I am already so aware I am doing much less well than I usually would. I am always my own harshest critic anyway. So criticism that would normally just be water off a duck’s back takes on this additional sting.

Continue reading…

Gradually then suddenly

A friend sent me a great article from the New Yorker  by the rather stellar Megan O’Rourke which I can relate to so, so much of at the moment. Especially getting sick “the way Hemingway says you go broke: “gradually and then suddenly””, turning to the internet and drastic “lifestyle” changes to try to fix things, being dismissed by doctors every time you are unwell for years (for me it was always “it’s because you are so overweight”, “your B12 is a bit low”, “you’re a little bit anemic”, “it’s probably just a bug”), and the brain fog that makes it hard to write and perform, and the all-encompassing nature of fatigue.

This part of the article especially articulated something that I have felt lately, but haven’t been able to find the words to describe.

The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self.

It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person. Taking the subway to N.Y.U., where I taught, I felt like a mechanism that moved arduously through the world, simply trying to complete its tasks. Sitting upright at my father’s birthday dinner required a huge act of will. Normally, absorption in a task—an immersive flow—can lead you to forget that you feel sick, but my fatigue made such a state impossible. I might, at the nadir of my illness, have been able to write one of these sentences, but I would not have been able to make paragraphs of them.

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.

My mental sensation of no longer being a Person had a correlating physical symptom: my eyes no longer seemed like transparent lenses onto the world. They seemed, rather, to be distinct parts of my body, as perceptible as fingers—oddly distant, protuberant, like old-fashioned spectacles. My face felt the same way—like a mask I was disorientingly conscious of at all times. It made me feel categorically fraudulent. I could feel the fat in the cheeks and the weight of bones as I spoke. I felt a mounting anxiety: everything was wrong, and that wrongness was inside me; only I wasn’t sure anymore what that “me” was.

It’s comforting when you find someone so lucidly explaining something that you haven’t been able to figure out how to express yourself. On a bad day, this is how I feel: like even being my sick, tired version of myself is a huge act, a big effort. And I feel anxious that I’m not playing the part properly. And that anxiety spills over into everything else as well. It’s the strangest feeling, one I have never experienced before in my life.

I’m still waiting for some autoimmune tests to come back to see if that might be my problem, and the other night I did a home sleep study for sleep apnoa and other things. In the avalanche of annoying medical tests I have done lately, at least the home sleep test was mildly amusing. I had to rig myself up with electrodes on my head and torso, straps all around my torso, a pulse oximetry thing on my finger and a canula up my nose. Holding it all together required copious amounts of masking tape. With my wires and tape, I couldn’t decide if I looked more like a terrorist bomber or someone who had just failed really badly at a DIY project. But it was not the best night’s sleep, that’s for sure.

I looked just as enthusiastic as the guy in the instruction manual when putting it all on–and 100 times worse than that when I woke up the next morning!

Well this should be fun tonight. Preparing for bed tonight is worse than trying to build flat pack from ikea. #sleeptest