On Just Getting By

So it's been a while.

Four months without blogging is a long time for me.  But I just haven't been able to.  I've started and deleted a bunch of things.  I've thought deeply about topical issues and wanted to share those thoughts, but couldn't articulate them clearly.

But I haven't been able to read either.

Before last week I hadn't finished reading a book* since February.  That's five months without reading.  That's a long time for me.  And again, it's not for lack of wanting to.

I just have no brain.  And while I do have some downtime I'm too exhausted to use it in the ways I usually do.  Murray's epilepsy has been a huge adjustment for us.  Our days are never predictable.  Our workloads fluctuate, but seem always greater than they used to be.  There is no space to process the crazy days.  We just have to trek forward while juggling work, parenting and all the basic household stuff alongside very real and often pressing health needs.  It's exhausting.

And it's no-ones fault.  There's no-one to blame.  Sure, hospital appointment wait times and GP limitations are frustrating, but there are reasons for that**.  We could get mad at our health system, at the government and the lack of services available for folk like us, but frankly it's a waste of energy.  All we can do is live in the now and do the best with what we have.

Instead, I put the little energy I have left toward being grateful.  I am grateful for my education.  I am grateful for the years of therapy I've had before this point.  I am grateful that I have had access to texts and books and people that make all of this easier for me to compute.

Because I'm so tired.  All the time.  This feeling reminds me of being a new Mum.  Not so much a depression, more of a fog.  That feeling of trucking on with little sleep.  Of being physically tapped out.  Of having to learn as I go.  Of letting go.  Maslow's Hierarchy of Needs is what I cling to.  It keeps those feelings of failure at bay.  Being able to be creative and political and engage socially are all top tier things.  And the reality is that at the moment we are struggling to meet those basic needs near the bottom.  Because it's just hard to at this point.  Knowing this allows me to somewhat let go of my ego around art and writing practice.  I am so grateful because that guilt is so futile, and just another thing I'd have no energy to feed.

Our reality is a cycle of struggling to meet the basics.  If I work extra, it helps me feel more financially secure because we can put more away in savings.  And it allows us to put money aside for things to look forward to so life feels more bearable.  But when I do work more, I spend less time with the kids and their behavior starts going sideways.  And then they don't sleep well and wake up with nightmares which starts an energy sucking cycle which affects everyone.  And when we're not well rested, we get run down and sick or (for Murray) have seizures.  And then we can't work and this impacts our finances, so we feel we need to work more...

It's a crazy balancing act.

I am just so grateful for all the support we have for the kids.  To my Mum who not only comes and helps two days a week so I can go to work, but also drops stuff to help out when Murray's unwell.  To both our workplaces who are so understanding in terms of our situation so we both still have jobs and enjoy going to them.  And to our school.  Who not only provide an environment that our kids thrive in but, according to Murray, are ace at handling seizures because they do so calmly with kindness and dignity.  While I know we're struggling to meet our kids psychological needs, I feel grateful at this point that they safe, they have enough to eat and they are surrounded by people who love them.

So yeah, I'm not writing, but I am coping.  The great thing of having grown up with a crazy home life, and having lots of therapy as consequence, is that not only am I used to managing crazy situations, but I have mad tools in my coping tool belt.  I can handle Murray having seizures while I'm driving, or choking on a carrot when postictal*** or having a bad fall, and then wake up the next day, put on my face and go to work and be ok because of those tools.  I swim a lot.  I sleep as much as I can.  I revel in shitty Netflix and mindless phone games.  I try to care less about the state of my house.

 Me, about to leave to Warkworth, after a swim      

And I make sure there are always things to look forward to.  Murray does too.  We have to have things to look forward to to make those bad days feel less hard.  I try and get away (situation willing) to somewhere close by a few times a year.  If I want to see a movie - I go and see that movie.  Murray still goes to as many Bloodbowl tournaments as he can.  We plan family outings and short breaks.  And if stuff isn't great on the day, we always have a plan B.  Sometimes we miss out - but sometimes we don't.

I guess this is just writing for writing's sake.  Because I've managed to bribe the kids with Roblox.  Because Murray made it to work today.  Because today is a good day.  And I have no idea what tomorrow will bring because that just isn't what our lives look like right now but regardless of what it is, I will be ok.  Because there is always something else to look forward to on the calendar.

Murray and I in a fancy hotel for one night without kids

* Besides kids books.  Not that they don't count - I LOVE reading kids books and the awesome stuff Etta likes to read (Ripleys Believe It Or Not, non-fiction books about cats, tween graphic novels), but I haven't been able to read anything that takes more than one sitting to finish.

** So, um, there's a pandemic happening.  And while we live on a series of isolated islands far away from it all, this does (and has always) restrict our access to certain treatments here in Aotearoa.  There are very few specialists that deal with what we are dealing with currently (being 'special' really isn't a great thing in medical terms), and with a growing population on top of the pressure of backlog from last years lockdowns, progress with tests and specialists is slow going regardless of whether you have health insurance or not.

*** After a seizure.