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