It was our honeymoon, but it was also our birthday (yes, it’s the same day), and this year, I turned thirty. In some ways, I felt like I was already there – I was definitely tired enough to feel thirty. But in other ways, it felt like a relief. Like you’ve been waiting for a wave to crest and potentially crash onto you, but the swell lifts you up and drops you back exactly where you were.

Thirty feels kind of nice. It feels like… this next decade will be full of wonderful things and I know so much will have happened between now and my next milestone birthday. It also feels like confidence and satisfaction and safety and a million other things I can’t quite name yet.

Thirty doesn’t feel as fraught as my twenties. It feels kind of cozy and optimistic. I was so worried (and I think this is pretty common) that I would feel like I peaked in my twenties and it was all downhill from there. But I feel the opposite – I can already see so many wonderful seasons of my life still ahead of me, some closer than others, and although I am very happy being thirty, all the other years stretched out ahead are looking pretty good too. I hope I never feel like I peaked. I hope that life just shrinks and expands, shifts and deepens, and becomes more and more beautiful every year with the details, memories and wrinkles it accumulates as we go along.

Wedding Advice, From Somebody Who’s Been There!

Photo by the amazing Erin King.

Wedding post (or maybe posts) is still coming – I haven’t gotten my photos back yet, and even though it’s been three weeks, I am still exhausted from the lead up. I have sent out my thank you cards though, so that’s a win. I’ve mentioned it before, but planning a small wedding has almost exactly the same quantity of planning that goes into a big wedding – it’s just that the numbers are smaller, and you probably have less people annoying you about inconsequential details. I have discovered that I am an extremely detail oriented person though, so there were probably a lot of things that I took upon myself that wouldn’t have been considerations for more easy-going brides.

However, I am proud to announce that I didn’t go Bridezilla at all, through the whole thing. I might have cried my eyes out more than a few times, but I tried my hardest to not put unreasonable demands on people, and to always accommodate everybody where I could. Because I’ve been to enough weddings where I’ve had to stand around for hours outside in the freezing cold in the dead of winter, or have seen people across the table served food that they just can’t eat but were too scared to say anything, or shelling out for an expensive gift and never receiving a thank you. Stuff like that. I wanted everybody there to feel like our special guest, rather than an audience that we felt obliged to feed.

The most ironic thing about planning a wedding though is that (if it’s your first marriage) you are going into it with absolutely no experience. But you learn as you go, and by the time you are done, you’re an expert… with absolutely no cause to plan a wedding again anytime in the near future. It’s kind of like putting years of work into a university degree, having a graduate job for one day, then retiring for the rest of your life. It’s odd. I’m definitely in a good position to give my sisters advice when it’s their turn, but then again, they could opt for something entirely different and then my skills will be useless all over again. But I suppose I can bask in this sense of personal achievement – I learned something new, it was hard, I got through it and I did a damn good job, and I should be proud of that.

But there are little bits of advice I can pass along here, for anybody who might find them useful. No situation is the same, but if it helps anybody, it will be worth it!

  • A wedding can look however you want it to look. Don’t get sucked into the idea that you have to do it the way that everybody else has done it, because at the end of the day, it’s about two people getting married – that is it. That’s the common thread in all weddings. What happens before and after that moment is completely up to you and there are no rules. Well, there are a couple – I would advise that you should feed your guests, especially if it’s at a meal time, but that does not have to mean a beef-or-chicken alternate drop three course meal. It could mean tacos, or a brunch buffet, or cake and punch – whatever you want.
  • You do not have to go with a wedding reception package at a wedding reception venue. For a small wedding, lots of restaurants have private dining rooms, and some don’t even charge a hire fee (just a minimum spend). Don’t think that it won’t feel like a wedding, because with the right decorations, the right music, the right crowd… it will. Simple can be special too. And an advantage of picking a restaurant is that, if you are foodies, you can pick something really good or unusual instead of standard wedding food where you often don’t have a lot of choice or variation. And you avoid the wedding tax**.
  • Registry offices can be lovely, so don’t write them off before you’ve had a look. The one in Melbourne has an open hour once a week where you can go in, have a look around and talk to the celebrants. Many of our guests commented that they thought a registry office wedding would be plain and dingy, but it was anything but. The room has gorgeous architecture, high ceilings, antique furniture and floral arrangements already there. We got to pick our own music and personalize our vows. The ceremony was very quick and to the point, but it never felt rushed or procedural.
  • You do not have to invite every person you know. Nathan has a Catholic family on one side, and I got a double dose, which equals a LOT of aunts, uncles and cousins. Some of whom we are close to, others who we could pass in the street and not recognize. We were faced at first with a situation of inviting all or none, but I didn’t want that either, so we just invited a very special few. If people love you, they will understand – I got messages from aunts and cousins who weren’t invited who were just so thrilled for us and sent nothing but love and wishes of happiness. Some people will be petty about not being invited though, other people will consider it a tit-for-tat thing if you went to theirs, but it’s just not the way things should work.
  • Pay for it yourself, if you can. I cannot stress this enough. One of the reasons we chose a small wedding was because we wanted to fund the thing ourselves without taking out loans. As generous as it is when parents offer to contribute, it does give them certain rights to decide how that money should be spent, and how many of their friends should be invited. They basically become a shareholder. We got to make every single decision for our wedding without any interference, and I honestly don’t think I could have dealt with the stress of having to navigate other people’s extremely different views on what our wedding should look like.
  • In terms of budgeting, I don’t think there is a one-size-fits-all approach to this. We ended up actually doing a retrospective budget for ours. We researched all the things that we wanted to include and made a ballpark figure as our absolute maximum total, but we definitely didn’t assign arbitrary amounts to different aspects and try to make them fit regardless of whether or not we actually liked those choices. But we were mindful the whole way through – if we spent more than we had imagined on one thing, then sometimes we would find a way to get a better deal on another thing. There were a few things that blew out significantly from our initial projections, but other things that were surprisingly cheaper. When we added it all up after the wedding, we were happily under our maximum – Nathan especially was thrilled with how I managed to throw together so gorgeous and fun for so much below the average cost of a wedding (plus he thinks I’m super smart… 🙂 ).
  • Figure out which things are your non-negotiables and which things you don’t care that much about – do this together, and it will give you a better idea of where the bulk of your budget should go. Our priorities were amazing food and an extensive cocktail list (Nathan), beautiful flowers (me), gorgeous photography (both of us) and pretty stationery (both of us) – so that’s what we focused on. But we had absolutely no interest in spending money on fancy cars for the event – we ended up walking and catching a taxi at the end of the night. Likewise, we could have easily spent a thousand dollars on an amazing wedding cake, and I’m sure it would have been beautiful. But instead we went with a extra-large size of what was essentially a party cake from a boutique bakery – it was definitely not a wedding cake, but it was so cute and so different and so tasty and it was definitely our wedding cake.
  • Realize that something is inevitably going to go wrong on the day. Something tiny and something much bigger went wrong for us, but you cannot get through a wedding without something falling over. Try to keep your cool and realize that when it’s all over, the main thing you will remember is how wonderful it was. Do not fixate on one of your groomsmen forgetting their tie or having a chipped nail or the celebrant mispronouncing your name, it’s totally inconsequential and nothing can be a hundred percent perfect.
  • Make sure you eat breakfast or at least snack while you are getting ready. It’s a long day, especially for the bride, and you don’t want to crash mid-afternoon like I did because I’d been too nervous to eat much.
  • Order extra invitations and save the dates, especially if you have pretty stationery. I have put away a bunch of them so our future hypothetical children can have a copy of their own. I’m also thinking of framing a copy of the invitation, a la Father of the Bride, for the house.
  • Brides – make a speech! It’s your wedding too, don’t just leave it to the guys. It turned out that I wrote the big heartfelt thank you speech, and Nathan just ended up (lovingly!) roasting me, but I’m so glad I spoke.
  • Do book a honeymoon. Even if it’s just something tiny and local, even if it’s just a weekend away – wedding planning is stressful, you deserve it. So many people say that they will do a honeymoon later, but life will always manage to get in the way. After all the stress of the lead up, it’s so nice to have some time together as a couple to completely de-stress, drink champagne and giggle over calling each other “my husband/wife”.
  • Write thank you cards as soon as you can. Please, please, please do this. Your guests have arranged babysitters, got their hair/nails done, bought new outfits, traveled long distances, potentially booked hotels for the night just to see you get married AND probably given you a gift too. It is the very least you can do to thank them for it. Emily Post says that personalized and handwritten is best, but a mass printed thank you postcard is better than nothing at all, which is what I’ve gotten from a lot of weddings lately.
  • Have fun on the day! Be present. Remember why you are there, what it means, and how much it means. Put aside any fights you will have inevitably had in the stressful lead up, and enjoy each other. Let yourself be excited. Look around the room at all the smiling faces of all those people who love you and are thrilled to be witnessing one of the most important milestones in your life, and be grateful for them.

There! That’s all we could think of – I’ll try to add to this list when we’re no longer on a post-wedding high. 🙂

** The wedding tax! There are a lot of things that cost more as soon as you mention the word ‘wedding’. Sometimes it’s necessary to let vendors know that it’s your wedding, so they can put extra special attention and care into their service for you. Other times, it’s really worth looking outside the box. We had our reception in the private room of a restaurant that said they held ‘functions’ – no mention of weddings. And surprise – for something like ten courses plus canapes, it ended up costing less per person than I had been quoted for ‘wedding packages’ of only three alternate drop courses elsewhere. Look around and don’t be afraid to step outside the square.

We Got Married!

About time!

On Friday, the first day of September, the first day of Spring, and our ten year anniversary, Nathan and I finally got married. We ended up going to the registry office (which is gorgeous and not sterile or boring at all), followed by a banquet at our favourite restaurant with just a handful of our nearest and dearest – parents, siblings, grandparents, one best friend each and a couple of others. It was such a great day – both of us cannot stop smiling about how perfect it all was. Planning the day seriously did my head in, but it was so worth it. It’s so funny that almost everybody who has been through wedding planning has told us that it was too stressful and they wished they had just eloped… I guess we are rare then – people who are glad we didn’t end up eloping, because what we had was so wonderful.

Best of all, our darling dogs got to be there with us. It was a long and tiring day for them, and Rupert got a bit fed up when it started to get cold, but I was so glad they could be a part of everything. After all, as much as we were beginning a new chapter as husband and wife, we were also reaffirming the little family of four that we already had. I think both dogs are still tired from the whole thing.

I promise I will write about every single detail – soon. Let me bask in newlywed bliss for a little bit!


So on the weekend, I went to Brisbane for a writer’s conference that I had been waiting all year for. I managed the flight like a total pro and was feeling pretty pleased with myself, and then… disaster. I woke up on Friday morning feeling like utter death and it did not get better for the whole weekend. It was even severe enough that I had three nosebleeds, which is big considering I’d never had even one before. Judging by the big fevers involved, the severity and the length so far, it is almost definitely the flu… which is kind of ironic, because I managed to get the flu last year on my way home from the same conference. Maybe I’m just not meant to frequent airports in winter.

I came home on Monday. Nathan was a total prince and drove all the way to the airport to collect me, bearing pillows, blankets and a mask so I wouldn’t pass the germs along. I’ve spent the days since living in pajamas and making all sorts of lovely honking and snarfling noises. Best part: I read some articles about how this is apparently Australia’s worst flu season ever, and rushed to call my parents to tell them to get the vaccine. Except they both already had it. I had not. Which is why I am now sick. After last year, you think I would have learned.

But apart from that…

Game of Thrones is getting really good. I am bursting with theories.
Jamie’s Italian was not as good as I thought it would be.
Good god, weddings are expensive.
My ongoing oyster craving enters week three.
Writing plans for the next quarter finally feel on track.
My roses are pruned, fed and covered in baby leaves – exciting.
We joined a farm CSA to be more mindful and ethical about our meat consumption.
I have a serious love for things that come in little blue boxes.
Far out, I’m almost thirty.
Nathan installed The Sims 3 on my laptop and I’m having the best time micromanaging the adventures of Johanna, Posie and Rupert. I mean, Juniper, Pancake and Rootbeer.
… and I am now the proud owner of a sparkly gold mermaid tail that will be gracing the esplanade at Eastern Beach this summer.

But more on that when it happens!

Little Bits – After the Rain

  • I saw a huge rainbow this week. So intense, and you could make out every distinct colour. I wish that there was a camera capable of capturing how bright it was. Pity it was over a horrid patch of industrial land near the highway. A rainbow this beautiful deserved to be over a verdant rainforest or some friendly cows grazing on buttercups, or something.
  • It’s almost spring! I hate this time of year so much, so it’s especially welcome to know that we’re so close to the finish line. Bring on shorts weather!
  • Speaking of finish lines, it’s also nice to think that there will be a time – very soon – when I will never have to plan a wedding again (fingers crossed). Lots of people have said that a small wedding must be easier to plan, and I definitely thought that was the case before I started, but it’s not at all. For everything that needs to be organized, it’s still exactly the same amount of emails, phone calls, researching, agonizing, stressing. Just a smaller number of people.
  • I bought a gigantic rug yesterday. It’s cream. I am not sure yet whether this is a brilliant idea or a terrible one. My rationale is that Rupert’s incredible shedding will blend in with the rug and I won’t constantly see the hair five minutes after vacuuming, like I did with our old black and white rug. But I am wondering how much time I’m going to spend on my hands and knees wiping away dirty paw prints. We’ll see when it arrives!
  • I’m off to my second ever writing conference tomorrow, which means getting on a plane. I don’t think there will ever again be a time that I don’t hate flying.
  • I’m growing garlic again this year – three types. It’s frustrating because it takes such a long time (9-ish months), but it’s so worth it. The bulbs I harvested last year were small, but full of flavour and quite hot. I roasted half and turned the rest into garlic butter, and froze it all in ice cube trays. This time, I think I’ll just turn it all into garlic butter, or maybe garlic and herb butters. It has been so amazing for garlic bread, on baked potatoes, for sauteing prawns… it’s just really good.
  • So, I hoped my little heart out that the Easter bunny would bring a chicken coop for the backyard and that didn’t happen, so now I’m pining all my hopes on Santa. I would love some pet chickens, and I’m sure the pups would love to eat omelettes for breakfast every morning. To be completely honest though, I’m kind of afraid of chickens though. They are kind of like baby dinosaurs, but they also seem so fragile.
  • Our honeymoon disaster has been averted and Nathan can come after all! I was completely prepared to suck it up and either go alone or not at all, but his boss insisted that a honeymoon was something unmissable and that his work projects could pause for a bit. He still has to come home earlier than me, but it will be very nice to have some time to relax together. Though we still have totally mismatched ideas about what constitutes a holiday, so I’ll be going off on some little solo adventures while Nathan drinks cocktails by the pool.
  • Something very special is coming in the mail today. I’ve been stalking the tracking information for weeks, and it looks like today is that day (or it better be – otherwise I’ll have to wait until I get home next week). It’s technically my birthday present and I won’t be able to use it for a while, but it’s like the pinnacle of my childhood fantasies. I think I’ll be keeping it to myself until I can actually show it in action though.
  • I love my suitcase. It’s sitting in the lounge room right now and I can’t help but admire it. You know in the old days how people would have those leather trunks covered in stickers from all the places they had been? Well, mine doesn’t have stickers, but it’s already full of memories. Despite my fear of flying, I just really love travelling. I’m really hoping there will be an opportunity next year to bring Nathan to Taiwan. It came up in conversation on the weekend how there can be places that you barely lived in, have spent such a short period of your life in, but when you get off the plane, you’re home. I feel that way about Taiwan.

And that’s about all right now. Endless lists of little bits seem to be the thing for me these days. It’s been a long time since I didn’t feel totally scattered. Getting past the wedding will be such a load off my shoulders. This honeymoon can’t come fast enough.

Reasons We Are Keeping Our Names

This has been controversial and I’m guessing will be a super hot topic as the day approaches – for me, a hundred times more than Nathan. It’s so regressive that nobody ever asks him if he’s changing his name, it has all been directed at me so far. It’s also kind of shocking how many people are completely shocked that I will be keeping mine, like it has never occurred to them as an earthly possibility. But that’s our decision, which is completely ours to make.

There are a bunch of reasons for what we are doing. Both of us are attached to our names, and they have been a part of our identities for a long time. I have an image in my head of what Johanna HisLastName looks like, and it’s just not me – it would feel wrong. There would also be the gigantic hassle of changing our name records all over the place, getting new passports and Medicare cards, etc. Then there is also the fact that we both have university degrees under our names, and I have writing published under mine.

My biggest objection though stems from something that I have already seen in practice, receiving mail for Mr and Mrs Nathan HisLastName, before we are even married. I cannot even describe how uncomfortable it made me feel. Like I’m a non-entity, not even deserving of even my own first name, completely erased. It’s just a little thing and I’m sure it’s just second nature for a lot of people, especially of a certain age, but it floored me how easily a name could make me feel so irrelevant, so unimportant, like Nathan’s accessory rather than a fully realized person in my own right who is entitled to a name of my own.

We debated the possibility of both of us hyphenating and gave it serious thought. For us, it was a case of… we’ll both do it, or we both won’t, but it wouldn’t be fair for one person to bend and the other person not to at all. We didn’t feel strongly enough about it, and in the end, why fix what isn’t broken? We will still ultimately be just as married with separate last names.

There have been a lot of objections thrown around though (some of which I’ve been confronted with, some I’ve heard from others), so I’ll answer a few.

It’s not even feminist for a woman to keep her maiden name, because it’s just her father’s name anyway…
It may be, but it’s not just my dad’s name – it’s my name. It’s what I was born with. I can’t control whose name my parents gave me, but I can say that I was given one name at birth and I’ve had it my whole life – how does this not belong to me? It may come from him originally, but so did his name from his dad – surely I can say that my name belongs to me just as much as it belongs to my dad.

If you don’t take your husband’s name, it’s like you are rejecting his family.
So, if he doesn’t take my name, is he rejecting my family too? Because it’s the exact same deal. Plus if I did change, by that logic how could I not feel like I was rejecting my own family? I like the fact that we will be forming a new primary family, but retaining our names as links to our families of origin. It would feel so lopsided and unfair to identify solely as members of just one side.

But it’s traditional. 
Lots of things are. Doesn’t mean they are for everybody.

It’s an insult to your husband to not take his name.
Then conversely, it’s an insult to me for him not to take my name (so many of these objections look so silly when you apply logic). Nathan is not insulted that I won’t take his last name because he respects that I am just as attached to my name as he is, and I’m super proud of him for being so mature about it. It’s so unattractive for a man to throw a tantrum about his wife not taking his name without ever considering that whatever he feels about the situation, she’s entitled to feel the exact same way about him not taking her name.

But how will everybody know you’re married / a family?
This one is kind of irrelevant, especially in this day and age of blended families all over the place where there could be three or four surnames among siblings that don’t match their parents either. There are lots of things that women can do to broadcast that they are married – a name, a ring, mentioning a ‘husband’, or just telling people. But even if you do none of these things, it doesn’t mean you are somehow less committed. Nathan and I will know we are married, and I’m sure that our nearest and dearest won’t magically forget that fact because we failed to have the same name.

But surely you’ll change it when you have children?
I’m sure my kids will know who their parents are regardless of our different last names. Besides, we already made plans for that long before ever getting engaged – to be revealed in due time!

July – Taking Stock

Photo is the brief moment when I had the whole cinema to myself last night. Where has this month gone?! It’s insane. The wedding is inching closer and closer, and I’m starting to panic a little about everything I might have forgotten. But here is my July, inspired by Pip Lincolne‘s lists:

Making : even more mess, all over the house, it’s just endless piles, everywhere
Cooking : teriyaki chicken with Asian greens and black rice (not great) – ham hock, vegetable and barley soup – garlic prawns with coconut rice and roasted cherry tomatoes
Drinking : all the coke zero before it disappears from the shelves forever!
Reading Rebecca’s Tale by Sally Beauman and the two magazines that I accidentally subscribed to when in a post-wisdom teeth drug haze (oops!)
Trawling : through my emails, certain that I’ve missed something
Wanting : my whole wedding dress situation to magically fix itself – it’s a bit of a disaster, of my own making, of course (I’ll write about it after the wedding)
Looking : a little worse for wear – it has been a rough week
Deciding : that I need to do things, I can’t just let myself get overwhelmed and thus paralyzed
Wishing : that this week’s big TN flare would just get out of town
Enjoying : our new electric blanket – sorry, puppy magnet
Waiting : to find out if our honeymoon is actually going to happen or not, or whether I’ll have to go by myself (yep, this is a real thing that is happening)
Liking : that I totally accepted a delivery of French champagne by answering the front door in a fluffy pink dressing gown and ugg boots – so classy
Wondering : if everything will come together for the wedding, or whether I’ll be a mad, panicking, hysterical mess the night before
Loving : the lemon scent of the daphne that Grandma gave me for my 26th birthday, right outside the front door
Pondering : what on earth I’m going to write for my wedding vows and speech – I feel like there is extra pressure on me because everybody knows I studied writing at uni!
Listening : to the eternal soundtrack of Rupert snoring and Posie barking
Considering : backing down on our original rule of no televisions in the bedroom, because it would be so nice to snuggle in bed with the pups and watch a movie… or maybe this is a clue that we need a comfier couch
Buying : a tremendous amount of macarons
Watching : The Beguiled – I loved it, would totally see it again
Hoping : that the pain will ease off soon and let me get back into things
Marvelling : at how much I enjoy having ironed tea towels, instead of just folding them
Cringing : at the fact that all the rugs I’m interested in for the living room are $1000+ and I just cannot justify that with dogs and open fireplace that has a tendency to spit embers past the guard mesh
Needing : to take my Van Gogh print (that I bought at the exhibition) to the framers, then decide where to put it
Questioning : how some people can behave atrociously and then instead of blaming themselves for being disgusting, they blame other people for thinking they are disgusting
Wearing : all comfy clothes, all the time this week
Noticing : that there can be a huge gap between a person’s true character and the mask they show the world, and that it’s always smarter to trust their actions rather than the picture they paint of themselves
Knowing : that last time, I wrote about how it had been too long between Bunnings sausages, and I still haven’t had one!
Thinking : about ways that we can reduce plastic waste in this house and recycle our grey water
Admiring : Posie, who is on her way to learning a trick in Chinese (we say ‘pigu’ and she’s meant to look at her butt – she gets it about 20% of the time at this stage)
Getting : inspiration to start meal prepping more often, because it is so much easier
Bookmarking : photos of Moira Shearer’s hair in The Red Shoes
Disliking : selfishness, drama, toxic behaviour and fragile egos
Opening : envelopes containing RSVPs
Closing : down lines of communication that are draining and pointless
Feeling : well… upbeat and motivated, but also periodically in excruciating pain that strikes without warning, so that evens out to just okay, I guess?
Hearing : so much noise and hate parading as culture and analysis lately – I think the rise of the personal essay has a lot to answer for
Celebrating : every time I get a few pain-free hours
Pretending : that everything is under control
Embracing : winter, for once, because it’s flying by so fast – if it’s going to be awful, it might as well be quick!

Things We Leave Behind

I’m doing some writing prompts by Ann Dee Ellis – eight minutes, unprompted and unrehearsed. I skipped the last two because they just weren’t working for me. So here’s today’s effort, about losing things:

When I was a kid, my aunt bought me a gold signet ring with a tiny sapphire (my birthstone) and the letter J engraved on it. I think it’s kind of a rite of passage for most girls to get one of these rings; I was totally thrilled to have a piece of ‘real’ jewelry. Then on one of our trips back to Australia, I lost it somewhere along the way. When I realized it was gone, we tore the cabin apart, checked under every mattress, in between the sofa cushions, everywhere. We even pulled open the vacuum cleaner bag to check if it was there. But it was gone and we never found it.

Nowadays, I’m a little paranoid about leaving things behind in hotel rooms. Every time I check out of somewhere, my mind is swarming with all the things that I could have possibly left behind. Even when I get on the plane, a part of me is still fretting about whether I have my phone charger and constantly checking to see if my engagement ring is on my finger.

But it’s not just material possessions. I’m losing time as well. Facebook memories are strange things, because I will see posts from less than a decade ago with comments (really meaningful, friendly comments) from people whose names and faces I don’t even recognize. There are big chunks of my life that have either slipped from all memory, or I’ve blocked them out on purpose. It’s scary, because it often feels like memories are the common thread between who we are at 6 and who we are at 36… and now there are big gaps in that narrative.

These days, I keep a diary. I have to find a better way of organizing it, but it’s just a Word document. Some days I come up with the most dreamy reflections, sometimes huge thoughts about the universe and the human psyche, other days it’s a total Burn Book where I basically character assassinate people until I feel better. I can count on one hand the number of times I have skipped back to read over past entries, but it’s comforting that they are there and I’m not going to lose them.

A Little Bit About Trigeminal Neuralgia

It’s past midnight and Nathan is watching English ghost documentaries on Netflix, I don’t want to go to sleep. Which is ridiculous, because sleep is the only time that I’m protected from having TN attacks. The nerve started showing little signs of agitation today – two brief 5/10 type 1 attacks, with an undercurrent of type 2 2-3/10 ever since. Nearly always in the maxillary nerve, sometimes in the opthalmic, only very occasionally in the mandibular. The skin on my right cheek feels like it’s slightly sunburned, and certain teeth keep throbbing, especially when I chew or drink cold things.

But all in all, this is not bad at all. In fact, I should be grateful, because I know how much worse it can get. But these little attacks are always scary because you never know whether it’s ramping up to something much more terrifying.

I still can’t describe exactly what it’s like, at its worst. Something like getting electrocuted or shot in the face, something like having the bones ripped out of your face with no anaesthetic, something like having lava poured all over your face. The first time it happened, I thought I was having a stroke. It was so incapacitating that I couldn’t speak or breathe, only claw at my face while crouched on the bed on all fours like an animal. The only thought I was capable of having was of bashing my head against the bedhead until I died just to make it stop.

I’m lucky though, in that it’s not all the time. Although it’s pretty random when it happens, I’m slowly learning what my triggers are. When I’m in the middle of a flare, chewing, brushing my teeth, touching or washing my face, cold food or air, crying or being upset, tannins in red wine, clenching my jaw, wearing glasses or headbands all have the potential to make it worse, and sometimes stormy weather. We’ve also noticed that both of my biggest, longest, most terrible episodes came in summertime shortly after spending a few weeks in the northern hemisphere’s winter. But it can also be completely random. Sometimes I will be symptom-free for a month and feel prickling all across my cheekbone for no reason. Sometimes that will be all that happens, other times it is a warning that there’s more to come.

At the moment, I take Lyrica and Endone during the bigger, more longer lasting episodes. Unfortunately, Lyrica takes about a week to work and these things are unpredictable. Neither of these medications take the pain away, they just dampen it, and the Endone makes me drowsy. Anything that increases sleep also increases the time that TN can’t touch me. I am worried about the fact that this is a progressive disorder that gets more severe and often stops responding to treatment, but I suppose that’s a bridge I’ll have to cross when I come to it.

What I really wish is that more people knew about TN and understood what it’s about. It gets frustrating when people compare it to a headache or a toothache, and you think, if only. Most medical literature agrees that TN, along with cluster headaches, is the most severe pain experienced by humans. It’s really frustrating when people try to blow it off or act like it’s no big deal or that it’s totally like that time they sprained their finger. I wish that there was more information about young patients, because it’s such a rare disease already, but we are an even rarer cohort. But I wish most of all that people would use their empathy muscles and try to imagine themselves into our shoes – nobody wants to feel like this, but especially nobody wants to feel like the people around them think that they are being a drama queen over nothing. Because it’s definitely not nothing. I think for some people, they would just never understand until it happened to them, but that’s not something I can responsibly wish on anybody.

My hope is that they will find a proper cure in my lifetime. There are treatments available, but not all of them work for everybody, and some of them work for a little while then suddenly stop. There are people who have had the nerve severed entirely, but the pain comes back, and that is terrifying because… then what? Cut your head off? It always scares me that they call it ‘The Suicide Disease’. It also scares me that it is a progressive disease, and because it started so early in me (my first historic symptoms were when I was in my early teens), does this mean it has more years of my life to ruin than if I’d developed it when I was old? Who knows.

What I do notice now is that I feel insanely grateful for periods where I have no symptoms. Sometimes it has even gone on for a couple of months. It’s nice to feel for a while like you don’t have something wrong with you, you can almost forget about the whole thing. But when it is happening, there is always sleep.

^^ This photo was about a week before my first ever type 1 attack. I’d spent the entire month of January in constant pain, certain that I had some sort of massive jaw/wisdom tooth infection. I’d gone to the dentist and begged her to pull some of my teeth out and was in total despair when she told me it wasn’t my teeth. I was popping panadol and nurofen like they were going out of fashion, but they didn’t have the slightest effect. I guess the photo is proof that you never know what kind of pain can be hiding behind a smile.

June – Taking Stock

It’s winter! But luckily, the shortest day of the year happened this week, which means one thing – we’re in the home stretch towards summer, thank god. There are a bunch of things at the moment that are pretty great, a bunch that aren’t so great, but it’s never boring. Inspired by Pip Lincolne‘s lists:

Making : headway into my wedding to do list
Cooking : beef and spinach curry, saffron rice and cucumber yoghurt + ‘diet’ scalloped potatoes (which aren’t diet at all), asparagus and scotch fillet + I’m thinking maybe salmon tonight
Drinking : endless cups of lemon, ginger and honey tea
Reading Awakenings by Dr Oliver Sacks – so fascinating, so sad, so humbling
Trawling : for vintage Christopher Pike books
Wanting : to seriously just lay in bed with the heater on and play Age of Empires by myself for three days
Looking : at speed cleaning vlogs for inspiration, even if they do sometimes make me feel kind of hopeless
Deciding : that I really don’t need certain kinds of noise in my life
Wishing : that all the late spring/early summer flowers that I want for the wedding would magically be available for me at the right time
Enjoying : the fact that we’re not dealing with dog attacks every night anymore, and how much happier Posie is lately because of it
Waiting : for a time when Nathan will finally decide that it’s not reasonable for us to live in this crumbling house and that we will finally get started on renovations
Liking : taking a partial holiday from the news over the last few weeks – the Grenfell tower fire was just too upsetting to watch and brought back all sorts of anxious feelings about September 11, and I just figured self-preservation is a better option for me if the news media is going to be such a bunch of trauma vultures
Wondering : if I’ll be able to get myself on a plane in a few weeks – every time I have a flight ahead of me, I’m scared that it’ll be the time that I get to the airport and just can’t bring myself to do it, and have to come home feeling like a coward
Loving : “ye finny tribes” was a line in the libretto of Haydn’s Creation, which we saw last week – it means “fish” and I will laugh about this forever
Pondering : whether I’m ever going to own a pair of pants or leggings that aren’t baggy around the ankles
Listening : to my wedding music playlists and trying to decide whether to go for stylish ambiance or whether to just mash together all my favourite songs, no matter how eclectic (or jarring)
Considering : whether I need to re-pot my phalaenopsis orchids to make them bloom again
Buying : French champagne and cookbooks, merino sweaters and oh god, I have to get started on Christmas presents…
Watching : (or will be watching) Macbeth, next week
Hoping : that my skin can magically get it together in the next two months
Marvelling : at how much of a miracle drug Vivitonin has been for Rupert with his dementia, he’s seriously a new dog
Cringing : at my lack of assertiveness in situations where I should speak up
Needing : to make some specialist appointments that I have been putting off (explaining myself over and over is exhausting)
Questioning : whyyyy the wedding invitation company had to put their logo on the corner of the envelope
Wearing : my fluffy pink dressing gown at every opportunity
Noticing : that I’m getting a pretty deep wrinkle under one of my eyes and wondering what to do about it
Knowing : that it has been too long between Bunnings trips and that should be rectified this weekend
Thinking : that this whole Pauline Hanson thing is a storm in a teacup (frankly, she’s not a good communicator and even if she occasionally says worthy things, she almost always couches them in offensive terms) and that people need to respond philosophically and thoughtfully rather than emotively and irrationally just because their children have autism
Admiring : people aren’t too stubborn to let their opinions change when they listen to sage advice or tales of experience
Getting : a new dishwasher, I hope, since we haven’t been able to use the old one for over a year and we are the worst at doing dishes in a timely fashion
Bookmarking : all sorts of stopover guides to Singapore
Disliking : pretension, but also unwarranted arrogance
Opening : the bedroom curtains and letting the natural light wake me up each morning instead of using my light box
Closing : myself off from things that are just going to make me upset, over and over again
Feeling : pretty down lately, but motivated about starting a new exercise regime next week
Hearing : Rupert’s squeaky little dream-barks while he’s asleep on the sofa
Celebrating : the emergence of spring and winter bulbs, pushing through the soil (and weeds)
Pretending : (I totally skipped this one when I first published) mmm… pretending that I feel like socializing lately, I suppose
Embracing : that the dogs have decided they love sleeping in their own beds if we turn the heater on for them – I miss snuggles, but it’s so nice to actually have some room in the bed!