Coping With Change

I swear I'm going to be an awful complaining old person.
I'm already like a grumpy old lady and I'm not even 40 years old!
I hate change.

And while I know that change is necessary for progress, and something I facilitate within my own life, some change just sucks.

My local supermarket closed on Saturday.

It seems petty, but it really is a big deal.  I mean, our kids cried, and we had to make a special trip to go and say goodbye.

My kids dig Stickman

It's not just because it's Pak 'n' Save and it's affordable and less than ten minutes from home and the kids love Stickman.  It's not just because I know the layout and write my shopping lists via an imaginary walk-through down its aisles.  It's because we know the people who work there.  Many of those wonderful people have been a regular part of my life since we moved out West more than seven years ago.  They have seen me through pregnancy and crying babies.  They have seen me in tougher times, armed with a calculator and in better times with treats in the trolley.  They have showered our children with free teeny chip packages from unexpectedly opened multi-packs.  The staff at Alderman Drive Pak 'n' Save have been a big part of my life for the last seven years.

And now they won't be any more.

And what makes the whole thing worse is that how the owners went about this was not the best.  Sure, as a customer the store had some great deals prior to closing.  But the staff there were not offered a fair redundancy*.  And few have jobs to move on to.  And they have had to endure the whole will they-wont they back and forth over when the store would close.  I've been in that position myself and I can tell you it's really not fun.  Those people who have made us feel so welcome in our local community, many of them are now jobless after, for some, decades of good service.  I am mourning for those wonderful people.

And I am dreading having to do the grocery shopping this week.

Countdown cannot tempt me with
their parental guilt traps...      

My next closest supermarket is the Westcity Countdown.  But our food budget doesn't stretch to Countdown prices without making some serious sacrifices.  Our next best option is Pak 'n' Save on Lincoln road.  But it's on Lincoln Road.  And it's huge.  And huge shops freak me out.  I will have to learn a new supermarket layout.  I will have to change my usual tightly timed Thursday shopping schedule to accommodate an extra 20 minutes for travel time.  And no-one there will know me.  No-one there has watched my children grow up.  No-one knows my name.  That might change in time, but currently, I'm resistant to it.  It's not my supermarket.  I don't know how it can be.  I am currently bereft of a supermarket.

And I haven't just lost my supermarket.

My chemist is also closing this week.  This is completely understandable.  The Chemist Warehouse has opened up across the road, and if it's affecting aspects of my workplace's trade (which it is) it will certainly be affecting theirs.  While this isn't as big of a shock - while my chemist is not such a big part of my life, it's still sad.  And again, many of the staff do not have jobs to move on to.  Many of the staff have worked there for a long time.  This closure will impact on their lives in a big way.

There are plenty of other chemists nearby, but, sadly the cheapest and closest option for us is the very reason my chemist has closed.  I've only been to The Chemist Warehouse once and it is really not my cup of tea.  Like the Lincoln Road Pak 'n' Save it is huge and overwhelming.  But like my chemist, there is no charge for prescriptions.  And when you, or others in your household are on more than one regular medication, avoiding this cost really makes a big difference.

Where have all the postboxes gone?

And our postboxes over time have gradually disappeared.  I filled out my voting form for the local body election ages ago, but am yet to post it as I am unsure as to where I can post them any more.  And I don't trust the post box maps online because the last time I tried using one, it was out of date.  I have to drop the forms off to my local library today because it's now past the time that I can post my forms.  I don't post things often, but when our electoral system, hospital system and social service systems (WINZ) are still dependent on snail mail, it's quite important we can still easily access post**.  I mean, if they have real concerns about voter turnouts maybe this is a simple thing they could consider.  If it affects me, a relatively 'young' person, what impact will this have on older folk, or people in poverty, or folk with health or mobility issues?

Some changes are made without consideration of their wider impact.

I know that my reaction to these changes is probably bigger than it maybe should be.  But when you're overwhelmed by big changes, every little change becomes harder to process.  The last two years have seen huge changes for me.  Issues within my broader family have meant major changes to our family life. Where we used to have a huge extended family Christmas dinner, last year for the first time ever, it was just our wee family of four.  We have had to make big changes in order to keep our family safe.  And while those changes have been by no means ideal, they have been necessary.

Sometimes we have to make drastic changes to work toward changing this culture

And while all change is hard, the reality is that it is necessary for growth.  As a nation, our family violence rates are appalling.  And when in our own lives, we actively, or inactively allow abusive relationships to foster and grow, we are contributing to this.  I know this is something that we can change.  I know exactly why this change seldom happens because I live with the consequences of my choices around this every day.  It's not easy.  I am labelled a 'shit stirrer'.  I am told I don't understand the value of 'family.'  By calling out abusive behaviours I have become a target for further abuse.  This isn't exactly fun.  Actually, it's quite lonely.  But I want to build a better world for our children, and in order to do that I cannot allow abusive behaviours to manifest in either mine, or their lives.  I refuse to normalise abuse because 'Aunty Betty is just old fashioned.'  It's just not ok.  I don't want my kids to ever think that's ok.

I think one of our biggest problems is we are not taught to recognise abuse
Here are some of the warning signs.

I know that for those staff from Alderman Drive Pak 'n' Save and Westcity Life Pharmacy this change is hard.  But I hope that this is one of those changes that is for the better.  I hope they get to move on to places that actually pay them what they're worth (Pak 'n' Save and Countdown union members are both fighting for Living Wage).  I hope they move on to places that appreciate and understand the experience they have gained in the work they've been doing and recognise how good they are at dealing with people.  I really hope that the Auckland Zoo Gift shop re-looks at their applications and realised they missed a gem in not even giving Kat Stellar an interview.  I can think of no other person who would be more enthusiastic, better with children or experienced, to do that job amazingly well.

Change is hard, but I always hope that with it comes positive growth.

I went to Pak 'n' Save on Lincoln Road for a recce yesterday.  It was awful.  The kids hated it.  There were too many people and too many things to shop.  But I found some reasonably priced chorizo, something not at my old Pak 'n' Save.  And I don't eat that stuff, but Murray does.  So I built him a pizza with it because I was going out for a work dinner and felt a little guilty.  And he said that pizza was so delicious he ate the whole thing and had none left for lunch the next day.

It's a small win, but it's a start.

*  There is no point going into details, but I do know some of the details and it is extremely unethical, particularly toward the staff that have been there for longer than the current franchise owner.

** It now costs $1.30 to send basic post within NZ now.  That really isn't accessible.  Particularly for the elderly, many of whom still rely on post and many of whom are reliant on a pension to survive.

On How I Manage My Life

This year has been very busy and very hard.  My mental health has suffered and as a consequence, my creative practice.  While last year I managed my goal of writing one short story every month, comparatively this year I have written very little.  I had not set a large goal for this year.  I had a project earlier on which I knew would eat into my brain matter, so I had decided at the outset to take things easy.

But not quite this easy...

I'm the tallest one in the picture for once!   
Winning a Mothers Day Card comp circa 1993

When I have little to no creative output everything just feels wrong.  It's not due to guilt, or ego.  It's more a loss of my sense of self.  I've been creating in some form or another for as long as I can remember.  I started keeping a poetry journal when I was about eight, which I still have* alongside some of the obsessively crafted stories of imaginary worlds a nine year old me put on paper.  While creating is a large part of who I am I strongly suspect that it's a coping mechanism.  Sometimes a means of escaping.  Sometimes a means of analysing and understanding.  Always an important tool for managing my mental health.

A stack of frozen baby food.  So pretty!

When the kids were little and my brain function was at an all time low, I focused on creating manageable things.  I made jellies and delighted in their colours.  I made a sourdough starter and from that created gluten free bread twice a week.  I exulted in the rainbow of homemade baby food I blitzed for Etta.  I focused on different creative outputs so I still felt human.

But this year my brain has felt too full to do even that.

I have had patches of activity and patches of nothingness.  There has been no consistency.  My mental health has been the worst it's been since Abby was small**.  And I'm not sure what this is like for other creatives, but for me it forms a vicious cycle.  Down and exhausted so no energy to create.  Don't create, so feel further disconnected from myself.  Disconnection makes me feel even worse about myself.

Plum jellies, such a gorgeous colour!

But recently I've had a breakthrough.

This breakthrough was, in part, due to going back onto medication to get some stability***.  Once I gained my equilibrium I had a brilliant idea.

Excel.

I love spreadsheets.  They help me feel calm.  The absolutes of mathematics are comforting.  While I mostly use them for creating budgets (I love making budgets), I've used them for many other things.  I used them to monitor Etta's sleep when she was a baby.  I use them to create week planners and charts for the kids.  I used them to chart my temperature when I was attempting to conceive Etta**** - which totally worked.  In fact, one of Etta's middle names (Sally) is derived from Murray's workmates nickname for our potential progeny: Celly.  Thus named for mine and Murray's***** obsession with Excel.

A few weeks ago I suddenly realised another way I could use Excel to improve my life.


I started tracking my writing.

I set myself an optimum goal of writing four hours a week.  I know it doesn't seem like much, but it is much more than zero.  Four hours is half of an eight hour work day.  Four hours feels like a manageable amount plus enough to achieve something tangible.  And while I haven't managed that goal as yet, I have managed to get some semblance of a writing practice happening.  I am excited about creating data to analyse and decide what else I should be tracking.  I have managed to post a blog once a week over the last three weeks while posting consistently on the same day.  This has never happened before.

I have built some LEGO this year, but building
without instructions meets a very different need.

It probably seems a bit silly, but I'm a list maker.  I'm a chart filler.  I'm a box ticker.  Having a visual reminder of what I should be doing makes me want to fill in those little boxes.  I'm a teachers pet from way back.  So it means that even if I really don't feel like writing.  Even if my brain is tired or my mind is blank I am picking up the laptop in bed and putting words on the screen.  I'm taking the lappy to work and snatching five minutes of writing time in the car.  I am editing in the lunch room.  And those words might be rubbish.  But it doesn't matter.  Because it's a start and it gives me a place to work forward from.  Building something is better than building nothing.

And I am starting to feel better.  I am still saddened that two wonderful people have left this earth sooner than they should have, but I'm coming to terms with it.  They were both problem solvers.  Both determined (some might even say stubborn) to do what they felt they were called to regardless of what barriers were put in their path.  Even if what I'm making currently is unremarkable, I am making.  And making is helping this grief, this loss, feel more manageable.



* Oh dear lord there is some awful stuff in there!

** A colicky baby who will not sleep alone plus a toddler with sensory issues does not make for good mental health
*** I had gone off my meds by accident (again), but had been coping ok.  I found that I was sleeping much better when I wasn't medicated, and that felt friggen amazing.  But with all the things that happened this year, after a while that ability to cope faded.  And, even with the negative affect it has on my sleep, medication became necessary again.

**** I only have one fallopian tube and had just been the go ahead to try to conceive.  But when not on the pill, my cycle is super irregular (thank you endo!) so I needed all the help I could get.  We had been told due to my medical issues we would be eligible for one bout of free IVF on the government, but having been through unsuccessful IVF as an egg donor previously, I really hoped to avoid that.

***** Murray is not so much obsessed with Excel, as someone who has had to use it as part of his job.  He is the master of adding buttons to make cool stuff happen to your data collection.

On Discovering Etta Had Sleep Apnoea: An Education

Parenting doesn't come with a manual.  I don't think there is a way any human can be prepared to deal with the stuff you might have to deal with when you become a parent.  You have no way of knowing what personality your kid might have, the kinds of things they struggle with or what health issues they may have.

I think parenting is tough for us all.  We all have our different challenges and we find ways of managing them in many ways.
Baby Etta - no way we could know what
challenges she might face.

From early on we knew Etta was different.  I wrote a three part blog series on this back in 2017 as it really affected our daily lives and I hoped sharing our experience might be useful for other parents dealing with similar.  Pretty much the same reason I'm writing about this.  At the time of writing those posts I thought we finally had some answers - Etta was gifted and had sensory issues.  That made, and still makes, total sense.  Etta's behavior is fairly typical of both of these things.  Parenting her was challenging, but that was to be expected.  We hadn't realised there was anything else missing from the picture.

But subsequently we discovered she had a significant health issue that was amplifying her issues.  And it was not something we would have easily picked up without help.

Tonsillitis, a pretty normal childhood illness    

Etta first got tonsillitis when she was not quite 2.  It was scary for a day or so, but she took her antibiotics and she got better.  Then over the last two years she had a few bouts of tonsillitis and  strep throat back to back.  From the many other parents I know I'd heard that tonsils are usually only considered problematic when there are back-to-back bouts of tonsillitis over a significant period of time.  As this wasn't the case (yet) we still weren't too concerned.

But during the last bout of strep an A&E doctor said it might be worth seeing a specialist purely because of the size of her tonsils.  This doctor's comment made all the difference.

We figured, why not?  We are fortunate in that we have health insurance, so there was no additional cost or harm we could see in following up on that advice.  When I saw our GP for a referral she told me in her opinion the appointment was unnecessary.  She said it was unlikely a tonsillectomy would be recommended.  I wasn't concerned.  I reiterated that I was just following up on other advice.  I'm not a medical professional.  I have no way of knowing what the best course of action would be.  But I am a parent, and I care about the wellbeing of my kids.  And I knew a specialist would know better than two GP's with differing ideas.  The GP gave us the referral but made it clear that we were most likely over-reacting to a normal childhood illness.

Gillies hospital was fantastic.  Unlimited iceblocks, jelly and lollipops.  And lunch for us too.

With health insurance, appointments are fast.  I have friends still waiting through public for the same consult and it's been more than four months.  We had an appointment to see an ENT specialist at Gillies Hospital within two weeks*  I steeled myself for being told off for wasting this guys time.  But before we even saw him the receptionist gave me a questionnaire to fill out.  It asked a series of questions that no-one had ever asked me before - about Etta's moods and behaviour.  When I saw the specialist before he even looked down her throat he told me she had all the symptoms of sleep apnoea.

This was an education in itself.

Etta sleeping with Nettie.  We had no idea Etta    
wasn't getting the sleep that she should be.     

It turns out I knew basically nothing about sleep apnoea.  I had been asked by GP's if she had sleep apnoea previously and I said no, because I didn't really know what it was.  I always thought it was something older, overweight people got. I thought it meant you stopped breathing in your sleep.  I had heard of CPAP machines, but only because a few comedy movies and sitcoms I've seen had annoying characters use them to disturb everyone's sleep.  I had no idea this was not just a domain exclusive to older people.  I had no clue that kids could have it.  I had no idea that her irritibility, trouble sleeping or her snoring were all common symptoms.  No-one had asked me before.

We did know that Etta was chronically exhausted.  Once she started school we had to stop all her extra-curricula activities as she just didn't have the energy for them.  Whilst she performed well in school, once it had finished each day she dissolved into a sad, grumpy mess of a kid.  Normal playdates with friends were tricky.  She would want to go, but once there was too tired to handle being in a new environment.  And we are those strict early bedtime kinds of parents, so she wasn't going to bed late.  She did sometimes wake overnight but she's an imaginative kid** with sensory issues so that seemed normal.

Bride soup, one of the only meals containing some vegetables that Etta will eat.  It is delicious

Because of her sensory issues, for a while I thought her tiredness might be due to her lacking-almost-completely-in-vegetables diet.  So we decided to take her for a blood test.  And while that was a horrible experience in itself (took me plus another phlebotomist to hold her down while a second phlebotomist took her blood) it came back clean.  They'd checked her iron, her B12 and given how pale and thin she is, they checked for Coeliac disease too.  Her bloodwork was perfect.  We've subsequently discovered she was chronically tired because she had sleep apnoea.

That in itself was enough for the specialist to say she fit the criteria for surgery.  And when he looked at her tonsils he could tell us they were so enlarged that the ends had flattened off.  We relax when we're sleeping, which drops the tonsils down further.  So while she slept they were pressing together almost totally obstructing her throat.  This is what caused the flattening off.  We had no idea that this was causing so much trouble for her.

This book made all the difference to Etta

Again, scheduling was quick.  She was booked in for surgery just over two weeks after our consult.  The best thing about going through private besides the time frames were that Etta was treated with the utmost care and respect.  She was given a book which showed a kid like her going through the procedure so she knew everything that was going to happen.  She read that book over and over again.  And for an anxious kid, when the day came for her to have the surgery we had no protests and no tears.  It was a wonderful surprise.

The surgery itself only took about 20 minutes.  We'd signed off on her having an adenotonsillectomy in case her adenoids needed removing as well.  Post surgery, while Etta was in recovery her surgeon told us it had gone well.  Her adenoids had been blocking 85 - 90% of her airways, so this surgery really would be a life changing for her.  And while the first week of recovery was very rough (she wouldn't eat at all for two days of it), six weeks post surgery, we are already seeing those changes.

Our surgeon had told us that the difference this surgery makes for kids like Etta is huge.  Sleep apnoea has a massive impact on a kids ability to grow as they should.  It affects things like their weight, height, their attention span, their ability to socialise and their ability to deal with conflict.  Once sleep apnoea goes, those issues dissipate.  He said many kids have a growth spurt post surgery, and most see improvements in their school work. 

The biggest change we've seen in Etta so far is that she is just a happier kid.  Every day is not such a struggle for her (or us) any more.  We've been able to enroll her in an extra curricular class this term and she, for the most part, enjoys it.  She fights with her sister less.  Her ability to communicate her thoughts and articulate her feelings has improved so she has tantrums less.  She's leapt up two reading levels and she's even showing more interest in trying new foods.

We have a different kid at home.

* I think this is so wrong.  Our public healthcare system needs to be better.  As it stands curently, it isn't able to best serve our people and I know so many people who should have a better quality of life due to simple issues, that can't because of the constraints of our health system.  This doesn't just cost those people, but costs us all financially as preventative or early intervention cost the health system far less than the ambulance at the bottom of the cliff approach.  Those who are financially stable should not be the only people able to access decent care within decent time-frames in Aotearoa.

** She currently is having trouble going to bed because she read about sleepwalking and is now terrified that either she will sleepwalk somewhere and wake up and be scared, or that someone will sleepwalk into her room.  So the sleeping thing wasn't just sleep apnoea.  Her imagination is still a large factor in her anxieties.

On Taking Time Out

I go on holiday alone once a year.  I have done for the last three years.

My hotel room door from this years trip.

I didn't think this was a particularly revolutionary act.  But after my most recent alone-time holiday I was reminded how odd this idea seems to many people.  Most Mums I spoke to about it reacted with surprise or envy*.  And while I guess I only know one other person who does this, so I know it isn't that common, I still find the reaction really sad.  Sad for us as Mums.  Sad for our whole society.  Sad that the world we live in doesn't think that it's normal for us to want or need a break.  That as women, taking time out from our family for ourselves is still a somewhat shocking idea.

And it's sad because of the double standard.  Because I know that no-one bats an eye when men do it.  The amount of Mums I know who have partners that travel for work, or go away for weekends with their mates far exceed the number of Mums I know who do the same.  I've heard this straight out of the mouth of a young, privileged white male.  This person had just taken time out from his family to travel for work for several days - he was away from his family when I saw him - and he berated a mutual friend who regularly travels for work away from her home and family.  He expected me to agree with him.  I don't know how he could possibly have got that more wrong.  This double standard around the roles of Mums and Dads is still so prevalent.  It's just sad.

When I was last catching planes before
I took time out for myself....      

I decided to take this time for myself after I got jealous of Murray.  He had been to Queenstown for a couple of nights for a work conference and was also going to Wellington for two nights for a Blood Bowl tournament.  I had no objection to him going away for work or enjoyment.  It was hardly going to impact on our family for those short periods.  But the idea of spending even just 35 minutes on a plane without children sparked so much joy.  It had to become a reality.

And I realised there was no reason why it couldn't.  Not so I could work or to play Blood Bowl, but to do my own thing.  At that point in time I was working on my Suburban Birds project.  Working on projects helps me feel like a functional human.  But with kids and sleep deprivation in the picture, maintaining a regular art and/or writing practice was (and still is) difficult.  Having some space away from the family would help. 

But more importantly, I was sleep deprived.  I was touched out.  I was sick to death of not being able to so much as take a piss by myself.  When I wasn't at home with the kids I was at work.  Or with friends or family.  Or with Murray.  I never had any quality time to myself, and not having it was impacting on my mental health.  So I decided I would go on a holiday too.

The first year I planned well in advance so I could save up to afford it.  I decided to go to Wellington because Murray's going to Wellington was what sparked my jealousy.  I love Wellington, and I hadn't been down there since I fell pregnant with Etta.  I researched flights and accommodation and booked a teeny self-contained motel room in Kilbirnie for less than $80 per night.  I waited until Air NZ had a sale then booked flights for under $100 return.  I was set.

The finished Suburban Birds Zine

And while the plan was to take the laptop down and work on drawing and writing for Suburban Birds, the bigger picture was simply to spend time doing the things I enjoyed doing before I had kids.  So I went out for breakfast.  I went to galleries and museums.  I read books.  I watched a crappy comedy at the cinemas.  I caught up with friends and played board games at Counter Culture.  I drank more than two glasses of wine without feeling guilty about it.  It was amazing.

And when I got home, like when Murray got home from being away, the kids were ok.  That first year I had genuine concerns.  The first time I went away, Abby was still breastfeeding** and I had been worried she wouldn't cope without me (or my milk***).  I phoned home more than I needed to.  But Abby coped, and Etta did too.  Besides being a bit clingy for a few days, the kids were completely fine and I was in a far better mental state than I was in before those few days away.

So I did the same thing the next year. And again this year.

This year has been tough for me.  There's been difficult family stuff.  I've had friends pass away.  I've coped by working more than I probably should which impacted on my mental health.  This year I needed this holiday more then ever, but didn't really have the headspace to plan it.  So I rethought things.  I simplified.  And I realised I didn't need to travel that far to get the space I need.  So this year I took a holiday in Auckland.

And I funded much of it using vouchers from surveys.

I saved up my Paypal survey rewards for a holiday facial and massage

After making $120 doing online surveys**** in December last year, I realised how much that could contribute to other areas of our regular lives without impacting on our budget.  After I booked my accommodation I started booking Groupons from my 'free' Paypal money close to where I was staying on holiday.  I funded movie passes and Subway vouchers from my survey vouchers.  Not only was this cost effective, but the planning aspect of the holiday was so fun it really gave me something to visualise and look forward to.

A robin I saw on Tiri.  So cute!

Holidaying close to home was truly brilliant.  There are so many things I used to do locally that I just don't do now I have kids.  There were things I'd forgotten I could do.  I discovered a world of possibilities that are literally on my doorstep.  I went to a friends 40th where I knew (almost) no-one and had a wonderful time meeting new people.  I took a day trip to Tiritiri Matangi - a place I've never been before - and it was just magical.  I went to bed at 9pm and actually slept.  Having time and space to just do things that I wanted to do helped me discover things that I think my family might also like to do.

I acknowledge that my ability to take three days out from my family each year speaks of a level of privilege.  I am able to go away because I have a supportive partner, other family support available and the ability to finance small trips.  But the point of writing this isn't about showing off.  I'm writing because I believe that taking time out is so important, especially for those of us who've taken on the never ending responsibility of parenthood.

And because I believe something like this is possible for most of us.  Maybe not so many days away.  But if it's possible to have just one night away.  If you can trust your partner, or your parents or your friends to mind the kid(s) for just one night.  If you can afford $40 for an Air BNB close to home for one night.  Just imagine the possibilities!  You can sleep, or watch tv uninterrupted, or read a book, or have some 'special' time with yourself.  You don't have to spend a lot to have a little time and a lot of freedom to yourself.  The important thing is - you do you without worrying about anyone else.

Because you deserve it!  Us Mum's, we all deserve it.  If you don't think twice about your partner or your father taking time out to go out with mates, don't think twice about you going out with mates.  Or if you're more inclined, by yourself.  If you put the effort into ensuring your kids have their needs met, make sure you put the effort into having your needs met too.  If going away overnight is too hard that's ok.  Maybe it's just about taking an our or two once a week to go for a walk, or go swimming, or go to a movie.  The main thing is allowing yourself some time or space where you can do something you enjoy with no pressure.  You are entitled to have time doing what you enjoy in a way that works for you.  You are allowed to carve out space where you are not responsible for everything.

Everyone deserves this.  Your family deserves this.



* In a good way

** I breastfed Abby until she was over three.  It was never intentional.  I always wanted to breastfeed until she was two but just assumed she'd self-wean at some point (as Etta had at 17 months).  The first time I went away she was over two and I was so tired of breast-feeding and so touched out it was a well needed break.

*** I could never pump.  My body produced excess lipase which meant my milk went off within a few hours so it just wasn't an option for me.  Plus I was kinda hoping that she would just 'forget' about the 'Mummy milk' while I was gone or my supply would dry up while I was away.  Neither of those things happened.  I fed her until she was three and we could negotiate cutting off the supply in a way that worked for both of us...

**** I use about four different platforms regularly to achieve this - Valued opinions, Opinionworld, NZ Toluna and Perceptive.  If you have spare internet and a little time on your hands it's a great way to get vouchers for retailers you regularly use, or to put money into Paypal.  I truthfully make about $800 a year from surveys (which is also not taxable, as it's also not cash).

Living with Invisible Chronic Illness

It's been about 15 months since my adenomyosis/endometriosis diagnosis.

When I was first diagnosed, it was just a massive relief.  I finally had some light shed on my more recent, severe issues plus decades of other issues.  I didn't really feel sad.  Just grateful to finally have some answers.  I finally felt some kind of validation.

But what these conditions mean for me in real terms are something else.  I still haven't processed this reality.  And it's easy to understand why.

The 'Tired Mum' trope does not serve me       

Firstly, I am not very unwell all of the time.  I am exhausted, but this is something that doesn't always register with myself, or others as relating to my illness.  I'm a Mum.  Lots of Mums are tired.  I'm a working Mum.  Working Mums are tired.  My pain levels are erratic.  In the past they have been so bad I could not go to work because I struggled to stand up for the length of my shift.  At the moment, my pain is manageable with minimal pain relief.  I have dyspareunia which is fairly bad all the time, but isn't something that affects anyone besides myself and my partner.  In the overall scheme of things, it doesn't seem all that bad because I am still able to work and look after the kids.

Secondly, I don't talk about it much.  It's not that I'm embarrassed, it's just that it's awkward.  Those closest to me seem bored, or even annoyed if I talk about it.  And when I talk to those more on the periphery of my life it feels as if they think it's a ploy for sympathy.  Almost everyone* I talk to has a level of 'ways we can fix this' in what they say.  Or a resigned boredness in hearing what I have to say yet again.  And that's hard because these are chronic illnesses.  While there are things I can do to minimise some of my symptoms, there is no cure.  This is my life.

The reason I'm writing now is because I read this article recently and saw, for the first time, this cycle:

And it just resonated.

Since the onset of adenomyosis, this cycle has shaped my life.  And diagnosis of my illness has not changed that.  I'm equally stuck in an exhaustion cycle.  I feel guilty for not spending enough time with my kids, my partner, my friends and family.  When I try to spend more time in these areas, I get more exhausted which makes it trickier to spend any more time and makes me feel like I'm failing as a partner/Mum/friend.  This reinforces the anxiety I face in attempting to spend time with friends.  And this reinforces my sense of isolation.  Equally, I know that if I exercise more, it will help me manage my weight better.  But to have extra money to go swimming (the easiest exercise for me) I need to work more, which makes me more exhausted, and then struggle to have the energy to exercise.  Being stuck in this cycle really sucks!

And the only place I can talk about this stuff is online.  Online it's easier to find people who actually understand.  Equally, I can take my time in trying to articulate how I feel.  Exhaustion and anxiety make real life conversations difficult and frustrating as I often struggle to convey in real time what I mean because my brain is too tired.  I also cry more easily because of the hormone overload, and this makes IRL communication even harder.  Where I used to see friends regularly enough to talk through the big stuff, these days this feels increasingly difficult.  For me, online support groups and friends are truly the best support.**  This is also why I blog.


*          *          *          *          *          *          *          *          *          *          *          *         

I have no idea how to exit this cycle.  But I do have some ideas about what would help me, or might help others like me.  You can find some more general ways of supporting someone with chronic illness here.  Here is my wishlist.

While I know many of these symptoms can
be attributed to other things, with 10% of 
all women suffering from this condition,
surely it's worth looking into sooner?

• More recognition of chronic illness by health professionals
  
  It should not take so many years for so many of us to receive a diagnosis (8 years is the average time for endometriosis).  Prior to a diagnosis I felt (and was often called) a hypochondriac, too 'sensitive' and a drama queen.  Basically, I was told there was nothing wrong with me and all the issues I was having were in my head.  This does not make for good mental health!  I know GPs cannot possibly know everything.  But I feel like if they were under less time pressure, they could listen better and would have a better chance to accurately assess symptoms and refer on as necessary.
  
  We should not have to push to expect regular follow up post diagnosis and a more supportive health system.  Even with a diagnosis, I feel like a drug seeker when I try and access any meds stronger than paracetamol.  There are women with my condition who are bedridden.  While I am not bedridden, it does not mean I am not sometimes in a great deal of pain.  If I didn't regularly have my pain minimised by health professionals, and if they actually checked in with me on how I was going with some regularity, it would make a huge difference to my self esteem around my illness.
• More awareness generally
  If there was more general awareness of many chronic health issues it would help make those of us with them feel more accepted by society.  What we live with would be legitimised, so our diagnoses might not affect our self esteem so much.  I feel like I have to be my own cheerleader much of the time, and this is difficult to maintain given my low energy levels.  More awareness would allow more empathy to filter through and hold us up.  It would make some space for easier conversations which would make it easier to seek support.
• Illness specific subsidised counseling
  I tried going back to regular (free) counseling through a local womans centre (free) because non-community counseling is damned expensive!  The place was lovely, but the lack of time flexibility meant that it was difficult for me to go due to childcare and work commitments.  I did not want to have to see someone else, as would have to explain my diagnosis all over again, which is difficult.  If once diagnosed you were referred to counselors that specialised in certain chronic illnesses, this would be so much easier to negotiate.
• Support groups for partners
  It is not easy living with someone with chronic illness.  This is apparent.  It's something that causes constant friction in my relationship, and I believe this would be helped greatly if there was better support available for partners of people with chronic illness.  Whether it takes the form of subsidised counseling, online groups or a meet up - I do not know.  But I know having something would definitely make it easier for them to also feel less alone.
  
  
  This has gone up to $21.15 this year 
• The Living Wage
  
  If I earned a living wage I would feel less guilty about working part time and more able to support both my family and my health needs.  I think this is particularly pertinent for fairly functional people with chronic illness as I suspect (like me) many choose the kinds of work that require less energy or responsibility to better manage other aspects of their lives**.  For me, this would make a difference of around $40 per week.  This doesn't seem like much but would make a huge difference.  It would mean I had enough to spend a little more on health or childcare or to support my general wellness.  And I am speaking from a position of privilege.  I cannot even begin to imagine the difference this would make to someone in my position that was a sole parent, or sole earner.
• A Decent Sickness Benefit
  Equally, if I were unable to work due to my chronic illness I would hope there was a decent financial support available for me.  My mother is in exactly this position, and is still expected to be seeking work even though some days she can barely stand up (due to changes to WINZ by our prior government who eradicated sickness benefits).  While benefits are now being indexed to inflation, as yet no changes are being made to bridge the gap from the many years prior that this did not happen.  Currently, it is very difficult even for those who are well to maintain basic health on the money received from a normal benefit in New Zealand, and even harder if you have an existing illness that requires ongoing medical treatment.
• A bit of kindness and respect
  Just be kind
  
  
  
  My illness does not make me incompetent.  When people ignore my feelings or experience, it does not make me inclined to trust them.  And the more often this happens, the less likely I am to reach out for support generally.  This is a pretty common response.  If you care about someone with chronic illness ask what we need in terms of support.  Respect our boundaries and limitations, and understand that they are in place for a reason.  Just listening and respecting us really does make a world of difference.

*  Besides my Mum.  Having been through similar health stuff she is pretty good at understanding how I feel.  But equally, we need more than just each other as each of us have limited energy resources which is tough.  We both want to help each other so much, but we can only do so much without making ourselves more ill.  And other friends with chronic illness get it too.

** At the moment also I have more peer support at work in terms of my illness than I think I would have anywhere else.  It's one of the pros of being in an almost entirely female workplace.  The downside of this is the gender pay gap associated...

So... I'm writing a book

Well, this is the plan.  And I'm telling everyone because I know I'm bad at following through.  I know I need external (or perceived) pressure to get things done.  Used to working collaboratively or in a team, I am not so great at being my own boss.

Tim Curry as the illustrious Dr Frank-N-Furter

But I can do it, and I need to do it.  Because this book should exist.

It was the infamous Dr Frank-N-Furter who instructed us 'Don't dream it, be it.'  A mantra I sincerely agree with.

So when a Facebook friend made me aware there were no fab collections of queer folk from Oceania I did some research.  What I found was that while we do have some great books about aspects of Aotearoa's queer history, most are scholarly heavy reading texts, or biographies.  Most of which were about gay men or lesbian women.  I found nothing easy to read that encompassed our diverse rainbow community and their history.  My children's fixation* on books like What Would She Do? and any similar collection of women through history evidenced what style of book might fill this gap.  And following those wise words from Frank-N-Furter, I decided to change this.

I'm probably not the best person to do this, but maybe that person is busy right now.  What I have learned in life is not to underestimate my capabilities, and that if I want to see changes in the world I need to start making changes yourself.  This will be the first non-fiction book I will have ever written.  But I have published fiction.  I have maintained a regular blog for seven years, and last year I worked consistently to meet my writing goals.  Having always been interested in gender politics and sexuality this is something which really excites me.  And with my educational background, and having been a comics and zines nerd, I know a fair few amazing queer Kiwi illustrators.  I know I have the knowledge, the intention and the connections to make this happen.

And it needs to happen now.

Elizabeth Kerekere - a queer Kiwi worth celebrating

This history is important.  When there are folk like Israel Folau and Brian Tamaki actively promoting hate speech about queer people, we need to fight back.  And the best way to combat bigotry and ignorance is through knowledge.  The solution to hatred, is love.  So I will combat those voices by building a book which promotes the history of queer Aotearoa, giving love to our tipuna and those doing the mahi right now.  To me, our pre-colonial takatāpui history, and the history of our neighbouring Pasifika nations is especially important.  Queer people have existed in Aotearoa since people first set foot here.  And before colonialism, takatāpui, fa'afafine, fakaleiti were just an accepted part of polynesian culture.  While much of this history has been lost or hidden, there are amazing people like Dr Elizabeth Kerekere working hard to bring this to light.  It is important for us to realise there was a time in Aotearoa when it was ok to be queer.

And while much has changed for some LGBTQIA+ communities, this is not the same for everyone.  Trans rights are gaining visibility, but acceptance and understanding of this community is still lagging behind.  Our intersex and asexual communities are so seldom acknowledged they are both still largely rendered invisible.  These communities are important.  As are our takatāpui and fa'afafine communities, our disabled queer communities and our religious queer communities.  And ask yourself - how many famous bi or non-binary Kiwi's can you name?  We still have a long way to go.

Why is it important to me?  Because I've felt the prejudice of being different.  It may not be common knowledge** but I have never identified as straight.  While I used to identify as bi, now I prefer the term queer as I feel the term encompasses more than just sexuality.  While I think a non-binary view makes more sense, with gender equity as it stands I feel there is more power for me in womanhood.  Having a Civil Union wasn't just about having a platform to talk about inequality between straight and queer people.  It felt hypocritical to choose to marry, something only straight people could do at the time, when the person I chose to spend the rest of my life with could just have easily have been a woman.

Me with a friend at Grandma's Rocky Horror Birthday***

I have always felt a lot of fear around who I am.  Not so much of being judged, more a fear of not knowing what to do, of getting things wrong.  I am a pro at the unrequited crush, the drunken hook-up, the missed signals, confusing signals.  This came more from lack of community than an unsupportive family.  While my family are far from perfect, as a kid it still felt that they were accepting of queer people.  Even though derogatory epithets for queer folk were regularly used on the farm, when it came down to the nitty gritty, my parents got it.  I know that because they accepted that a little boy we grew up with was a girl.  He knew from the time he was three - probably before that even.  They accepted that.  They did their best to support her family within a small, rural community who were dealing with something people didn't really talk about in the late 80's.  And when my Grandma had a Rocky Horror themed 60th and I was introduced to the magic of this cult film, I knew being different must be ok with them too.

But society was less accepting.  I remember there was only one out gay guy**** at my high school.  And it was a big school - more than 1500 kids when I was there.  I remember more than one girl across my two high schools getting teased and called 'dyke' just because they cut their hair short.  I remember two friends being teased mercilessly after they were caught kissing.  In the 1990's it was only ok to be a lesbian if it was for the benefit of the male gaze.

One of the hottest movie scenes from my teen years - constructed for the male gaze

And while I know this is changing, I know those feelings, for many of us, are still there.  Of being different.  Of not fitting in.  Of not being enough.  And when we already have those negative voices in our heads, the voices of those like Folau are all the more powerful.  But we can't give them that power.  Because we are all enough.  Knowing our predecessors, our queer tipuna, this whakapapa is important.  Knowing where we come from gives us shoulders on which to stand so we can stand tall no matter who we are, or how we identify.

Carmen Rupe

 And it's not like there are a shortage of amazing queer folk in Aotearoa's history.  I've only been researching in earnest over the last couple of months and so far I have over 80 people on my list.  And thanks to the support of friends, whanau and online communities, I am adding to this list every day.  This small antipodean nation is not just home to amazing queer performers like Carmen Rupe, the Top Twins and Buckwheat, but politicians like Georgina Beyer, Louisa Wall and Jan Logie who have, and are, changing our nation for the better.  We are home to LGBTQIA+ artists and writers, like Toss Woolaston, Frank Sargeson, Keri Hulme and Emily Writes and sportspeople like Laurel Hubbard and Amini Tuitavake Britteon Fonua.  We are home to so many queer people supporting their communities like Mani Mitchell, Ngahuia Te Awekotuku and Mama Tere.  We have trans astronomers.  We have gay religious leaders.  We have takatāpui parents.


We have a rich and beautiful queer history full of stories that should be told.

I need to write this book to give readers a chance at a peek into those stories.  So young LGBTQIA+ folk regardless of where they come from, or what their families believe, know they can stand tall on the shoulders of others who have walked this path.


* I bought this book for my own gratification knowing it was well beyond their reading level/comprehension.  But even at ages 3 and 5 they were hooked on the combination of image and information.  Etta can quote Malala Yousafzai and Abby can quote Frida Kahlo and Emmaline Pankhurst - they loved learning about them so much.

** But if you'd ever asked me I would have told you.  Everyone always assumes I'm straight.

*** My sitting on her lap = no indication that she is queer or we were a couple.  She was just a good friend and she gave great hugs and made a good chair.

**** And I think he was only out because he was a punk so no-one messed with him.  We also had one out bi guy.  I am pretty sure he was teased, but he was so tall that I don't think anyone thought it was a great idea to take him on, but I could totally be wrong.

If you have any ideas or names of queer Kiwis that you think are important please let me know!  Comment here or send me an email at queervoicesaotearoa@gmail.com .  I will not be able to include everyone, but I do want to ensure those I do include are representative our Aotearoa's many diverse communities. 

I'm hoping to fundraise for this book via Kickstarter, but that won't be happening until I'm a little further long with researching, likely early next year.  So if you want to know more, or would like to show your support when the Kickstarter begins then subscribe to this blog as I will be posting regular progress updates.

Why I Work in Retail

Recent positive results toward achieving living wage in this sector have highlighted the level of this industry's pay inequity.  This makes the questions about why I choose to do what I do seem more pertinent than ever.  I  know the pay sucks.  But my peers, not always.  And while I've answered this question countless times on countless occasions, nothing I say seems to quite capture why I choose to work in this notoriously low paid industry.

Fresh faced for Video Ezy

I have almost always worked in customer service or retail in some form or other.  At high school I worked in our local garden centre cafe.  At University, I worked in a call centre (this 'crap job' turned into my first 'real job').  Whilst at Unitec I worked in a winery and Indian restaurant, then afterward at a specialty art supplies store and video shop.  When the recession hit and the 'real job' I had fell apart, retail welcomed me back.  And when my store management job dissolved whilst I was on maternity leave, I returned to work for a previous employer in - you guessed it - retail.

Retail work has always been there for me.  Retail work has always been a safe place for me.

While no-one ever says it, there's a reason why I'm asked so often why I work in retail.  There's a snobbery around it.  An assumption that retail is not a proper job, and as an educated, intelligent person I should want more.  As if I'm some sort of oddity underselling myself.  But the reality is that I'm not an outlier.  Retail is full of educated, intelligent men and women*.  And we're expected to want more.  More challenges, more opportunity to progress our careers, more recognition and more money.  And while I would love, and certainly deserve more money for what I do**, the truth is that for me retail meets those other needs, and more.

Me, working retail whilst pregnant,
featured in an article in the NZ Herald.
This was rewarding, challenging retail work.

I am challenged in my job and learn new things every single day.  Working where, and as I do requires nothing if not versatility.  While my primary role is serving customers, doing this well requires a broad skill set.  Communication skills, computer skills, basic mathematics, problem solving and conflict management are just a few.  I never know one day to the next whether I will need to become an expert on the mechanics of vacuums or if I'll be building a shelving unit.  I never feel bored at work.

And I am recognised.  Not just by my managers and my peers***, as someone who works hard, but by those that I serve.  While in retail we are often faced with uncomfortable or confronting situations with customers, but the majority of the time we are faced with kindness.  I have been told 'God bless you.' twice in the past week.  I am thanked from the heart by strangers every day.

Beaks, the beloved TY toucan  

 

And in turn I have a job where I feel I can impact the lives of others.  Yes, my primary role is selling products, but the best way to do that is to forge real connections.  And this is what drives me in my work.  I've seen a kid literally jump with glee when I found the specific TY toy (which wasn't on the shop floor) she desperately wanted for her Mum's birthday.  I've given a young new Mum advice on how to manage her obvious mastitis without spending more than she had on one of our breast-pumps****.  I've shared my struggles around having a kid with sensory issues with other Mums in the same boat.  I use my position in retail to forge connections and help others feel less alone.

Because the truth is that even though often we are surrounded with people, many of us are lonely.  We live in a country where many people don't have family close by.  We live in a country where societal expectations often do not gel with who we are.  We also live in a country where prejudice is a real problem, and this further alienates those communities with less support.  Kindness and connection is an essential part of disrupting that prejudice. 

While I can post meme's on Facebook 10 times a day about kindness and compassion, really, it's just words.  And these words do not go far.  Not far beyond my circle of friends and family, not crossing barriers of language or poverty.  At work I can smile at every person I see.  I can empathise with others struggles.  I can show kindness by sharing something of myself to help others*****.  And when I encounter anger or prejudice I can do my best to dismantle it using calmness and kindness.  This costs me nothing, and gives me so much back in return.  And I get paid to do it.

*          *          *          *          *          *          *          *          *         *          *          *         

A sparrow from my left-handed bird drawing series

The other side of this is that I have a job that I can leave at work.  I cannot do my work from home.  I seldom get home and worry about work.  And that's important because I need to be present for my kids.  And I want to be present to pursue my other work.  Having a creative practice is like having a second job.  Regardless of what form it takes, or how much money it makes, this is work.  And this work is always on my mind.  Whatever project I'm working on lives within me.  Having a job that I can leave at work gives me space to live my life as a creative and a Mum.

This not only gives me a great sense of joy, but allows me to share this equilibrium with our kids.  Etta knows you can be a Mum, and have a job and be a writer.  She knows you can have exhibitions at home and make money from your art.  And she knows you have to work hard to do these things.  Through my creative practice our kids see that things don't always work out how you'd like, that what's important is to keep trying.  Sometimes Mum gets published, sometimes she doesn't.  But she keeps working, and trying to be better at doing what she loves.  And it shows them that while they are my world, my world is more than them.  And this makes their worlds bigger too.
    

I've always wanted to be on a game show!             
So glad we could show our kids our dreams can become a reality.

And working retail gives me time.  Part time, stable jobs that can work around having kids are difficult to come by.  Unless you work retail.  Here, I am blessed with a job that allows me to participate in the world and contribute to home finances, without compromising my need to be home.  And because I work so close to home, and in an understanding team (many of whom are also parents) if something goes wrong with the kids I can be there for them.

I know this is not possible for all working Mum's, and I am thankful to be in the position where I can have some flexibility.  As someone with diagnosed health, and mental health issues I need that time.  While I am a high functioning anxious person with endometriosis and adenomyosis, I am functional because have a lot of downtime.  I need adequate rest to manage my pain levels.  I need adequate rest to calm my busy brain.  And I need to be functional not just for my family, but for myself.

Because I've got shit to do!  I've got plans.  And while some of those plans involve creative ventures, and forging connection with others, another part of that is positive role-modeling for our kids.  I don't want them to believe that life is purely about work.  That amassing wealth is what they should strive for.  I want them to see the world is full of possibilities.  And if I can show them I can realise my dreams, this gives them the capacity to believe in their own potential to do so.

And this is made possible for me because I have flexibility in my work.  Because I work where I do.  And my job allows me to model the most important thing of all.  As Abby would say (it's Kindy's current whakatauki): Manaaki ki te katoa - Be kind to all.

Makyla Curtis, Renee Liang and me - the production team from The Kitchen

* But mostly women.

** I believe everyone deserves The Living Wage.  I am excited about the changes union action is bringing to the retail sector.

*** I cannot stress enough that not all retail work is amazing and flexible.  I have been very lucky in this respect.  I have managed to work for, and with amazing people, and my current work is no different.  The reason I am happy staying where I am, in spite of the pay is because of the team I work with.  Our managers lead by example.  Our merchandisers work their butts off (quite literally.  Lifting microwaves and boxes of sheets and plates and racks of clothing is not light work).  Our sales assistants are mostly like me - they care about people.  Their drivers for work, I suspect, are not so different from mine.  Our store is diverse which not only makes me lucky in the shared lunches department, but in learning about different cultures.  I work in a place where, for the most part, I feel appreciated and loved.  And I know this is not something that happens in every workplace.

**** Hand- expressing in a hot shower (she didn't even know you could hand-express), cabbage leaves, and if she has a temp get straight to her GP.

***** And I can merchandise the dolls section so that it's more reflective of the community I live in (more curvy, POC dolls in the front, less blonde barbies)