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.

On Our New Normal

So it's been a while.

I have a few half-written blogs I haven't posted and have had a lot of thoughts about this evolving world we live in that I haven't managed to write down.  And there is a solid reason for this.  Our family is slowly coming to terms with our new normal. Not just in regards to Covid, but in regards to Murray's epilepsy.

Murray is a much more private person than I so I will not share the specifics.  What I will say is that he's been told medication will not manage it well (it took a year of playing with meds to ascertain that) and we need to look into other options.  And we are trying, but even our private health sector is slow and difficult to deal with - particularly in neurology where, as a small island nation, there are just not enough specialists to go around.

So at the moment we're in limbo.  I can't remember the last time there was a seizure free week - it might have been Christmas because that was a surprisingly* good week.  As it is, we just have to take each day as it comes and do the best we can.  Murray's work has been amazingly supportive - mine has too.  Now, Murray mostly works from home.  It really takes the pressure off.  I feel extremely lucky that we already had a computer and an office space to facilitate this change.  But because of this change, I currently don't have a solid writing space.

A surprisingly seizure free Christmas

I am not one of those people who can just write anywhere.  I'm an extroverted introvert - it may seem like I love being around people - and I do - but I need space alone to recharge and regroup.  A LOT of space.  I struggle to write around others as it's a less stable environment for me.  It doesn't matter how well I know the people - I feel other peoples thoughts and feelings and words floating everywhere.  I need to be alone to hear my own voice.

And I just don't have the headspace to manage more changes at home.  So much has changed in the way we live our lives that I just don't have the energy.  Consequently, I've taken writing off the table.  I've been so tired lately** I don't even feel guilty.  Frankly, it's nice having a break from writer guilt.

While my brain hasn't been up to writing, it has been working hard on keeping well.  The biggest recent challenge was surviving school holidays with all of us at home together on the days I wasn't at work.  I had to come up with a new way of accessing some space from my whanau outside of the house so I didn't start losing the plot.  I found that space in the water.  I worked out a swimming schedule around when Murray was definitely working from home and left early in the morning (6.30) so I could be finished before he started work (8.30).  I went swimming on Sundays when the pools opened at 7am.  I wasn't perfect at this, but I did get some time out every week which helped me survive those seven long weeks with no school.

For me, the hardest part of our new normal is having to negotiate unknown territory.  A large chunk of my social anxiety comes from not knowing the etiquette around things - how I'm expected to act or behave.  With epilepsy - there is no guidebook.  Everyone experiences it differently.  While some triggers and types of seizure are commonly experienced, how it feels and presents for each person varies greatly.  There is no one solution - we are making up the rules as we go.  Yes, there is Epilepsy NZ and various other supports - but they don't offer any black and white solutions.  Yes, there are some first aid basics regarding the event of a seizure, but the rest is a free for all.  I regularly need to make decisions on the fly - like prioritising school pick up over monitoring Murray post seizure, or deciding whether or not to go on a booked trip.  It's scary not knowing whether or not I am making the right choice.  It is hard balancing everyone's needs.

A bittersweet trip out on the Kaipara without Murray after an early morning seizure.
Luckily Auntie Anne was free to join us,and we'll do it again another day.

This probably sounds awful, but I think these things are par for the course with managing many health conditions or disabilities when you're also a parent.  And while yes, it's not ideal, it's not without positives.  And it's really important to focus on those.  Murray is home more which means he has more time with the kids.  He cooks dinner more often, works less, and generally seems less stressed.  Both of us have made more of an effort to be kind to each other.  To accept each others strengths and limitations.  No, this is not what either of us were expecting when we committed to each other, but no-one knows what the future holds.  I feel this unexpected turn has only strengthened our relationship.

Not only that, but it does teach valuable lessons to our whole whanau.  While the kids are pretty used to seeing seizures now, every now and then one will still scare them.  They have had to learn skills most other children their age don't have - Etta can use Murray's phone*** to negotiate my work phone system and calmly tell me that Dad's having a seizure.  She has gone to the neighbours to get help when it was needed.  She sets a timer to monitor the length of his seizures, and can communicate to others its severity****.  No, this is not ideal, but it is our reality.  We have a mortgage and we all need to eat.  I do stay home from work when Murray's obviously unwell, but sometimes there are no signs.  We do the best we can with the situation we are in.  I am so grateful to have such strong and capable kids, and I try to make sure they know it.

We call her 'Dr Nettie' because she always knows
when you are sad or sick and she sleeps with you.

And they're empathetic.  Living with someone with health issues helps you view the world differently.  You see the inaccessibility of certain spaces and places.  The ways in which society does not accept people who are different.  The economic impact of living with ongoing health issues becomes apparent, the ways in which having less excludes people.  Our kids see this too.  They are learning the value of hugs, of time together, of the difference small actions can make.  They are learning how to adapt to unexpected situations and how to talk to us about difficult feelings.  They even get to see how animals show empathy (Murray has come to from a seizure with cats on him more than once).  These are difficult gifts to receive, but we still have to view them as gifts.

So this is where we're at now.  This is our new normal.  I am hopeful that in time this will change, but if it doesn't I know we will adjust and adapt.  I'm also hopeful that more writing will happen soon now the kids are back at school which does give me some headspace.  But I'm not going to feel bad if it doesn't.  Right now, I'm focused on the little things that bring us joy each day.  Whether it's cuddles with cats or kids, eggs from our hens or an unexpected win on Fall Guys.  Those things are enough for me for now.

* Surprising just because it's generally quite a stressful, busy and hot time of year.  And stress, tiredness and heat are the three biggest triggers for Murray's seizures.

** And no, it's not iron levels/lack of sleep/other logical explanation - it's emotional overload.  While with me it may not be noticeable in ways folk expect (crying, struggling to cope, depression) it physically manifests as exhaustion.

*** There is an emergency button set up on the front screen so the kids can easily call my cel, my work, Mum, or one of our neighbours.  It is seriously so worth us having.

**** It hasn't hurt that during the Level 4 Lockdown she became obsessed with a medical show for kids (Operation Ouch) on Youtube.  Since then she's been quite obsessed with facts about the human body and health stuff in general - we've even watched a surgery on someone with epilepsy together before.  She is quite matter of fact and this is very helpful when it comes to these kinds of situations.

Dr Xand and Dr Chris from Operation Ouch - Etta is OBSESSED