Hello Canberra

Oh why did we decide to move to Canberra in the midst of Winter?

We’ve moved into a comfortable 4 bedder on the northern side of Canberra, just a mere 5 minutes from the Federal Hwy. We spent about a week in temporary accommodation and a few weeks unpacking in our new home. We’ve spent time organising new rehab providers and specialists, working out where’s the closest grocery shop and takeaway joints. The past two months (has it been that long already?) has been a whirlwind of activity which is a welcome change to our lives in Adelaide.

As things start to settle down, we can get into some sort of routine. Our weeks consist of attending rehab 3 days a week at various locations around Canberra. On the other two days, Nathan’s new job is in Fairbairn, which is a quick (depending on traffic) 15-20minutes down another highway. Our weekends are spent lazing in bed (who wants to get up when it’s minus degrees outside!), driving up to Sydney to catch up with family and friends or slowly exploring our new city.

On top of this, Nathan pushes on with his home rehab program. This is a daily affair, which can get tiring after a while doing the same thing over and over again without seeing much progress. Nathan’s at the post two year mark now. Initially we were told that recovery happens in the first 12 months. But we now know that in order to recover, repetitive activities over a long time frame is what is needed to help neuroplasticity and regain function back.

We’ve been lucky to connect with stroke survivors around the world who are consistently regaining function back years after they’re stroke. It’s comforting and inspiring to watch others in the same position as us. We’ve also been able to connect with stroke survivors here in Canberra. Meeting face to face, we realise we’re not alone on our journey. Everyone is on their own path, but despite whatever they’re going through, everyone has been so positive and helpful with our move to Canberra.

Reflecting back on our time in Adelaide

*Finally posting this blog after our whirlwind road trip over from Adelaide to Canberra. I wrote this a few weeks before we left Adelaide and was going to edit it since we’re now currently in Canberra, but feel it’s best left as how I originally wrote it.

So if you haven’t heard, we’re moving to Canberra in about a month. Nathan’s getting posted to a new unit and we’ll be closer to family and friends in Sydney. With our move so close, I’ve been reflecting back on our time in Adelaide. It’s hard to sum it up in a single word or phrase. Yes, I have had enjoyable moments. But I have also experienced some of the worst moments of my life. Do they cancel each other out? I don’t think it works like that. However I’m trying to look back on our time here in Adelaide as a whole, not purely based on that defining event of our lives.

We’ve made friends, colleagues and acquaintances. We’ve explored South Australian towns and villages. We’ve sampled wine drunk our way through wineries, fine dined in the best restaurant of the year and tasted our way through Adelaide’s delights. We have a go to pork roll place, a favourite fast food joint and know the streets of Adelaide like the back of our hands.

But we’ve also gone through the bad and ugly. We’ve been on the wrong end of medical treatment. Nathan’s had to undergo 5 surgeries. I’ve had to quit my job to become a full time carer. We’ve been on the receiving end of discrimination. We have lost parts of ourselves. Losing the physical ability to walk, move and pick up objects. Losing the ability to work, love and live to the best of our abilities. Losing the idea of what life was meant to be like and plans that we had in place.

But from all that we’ve lost, over time we’ve learnt to refill the gap. We’ve been resourceful, determined and strong willed in our fight for justice and knowledge. We’ve learnt to not only rely each other, but ask others for help when needed. I’ve seen Nathan grow from strength to strength, from those first few days in a coma being told by doctors that he might not make it, to days in rehab where he always pushes on, no matter how much pain he is in. I have seen his motivation and determination exceed in places where others may have given up because it was the easier thing to do. In myself, I believe I have grown and matured from my time in Adelaide. My experience as a carer, partner and wife has dramatically changed and adapted with whatever has happened.

Maybe our time in Adelaide wasn’t what we had planned. But we’ve grown and developed as individuals and as a couple through each unique experience that presented itself. We’ve both been resilient on this journey, with our focus on his recovery and also raising awareness for stroke and brain injury in young adults.  I’m not sure if I can say I look forward to whatever else comes our way, but I can say that we’re both damn well prepared for whatever does happen.

Deciding whether to have children after a stroke

To have or not to have? That is one of the big questions we’ve asked ourselves after Nathan’s sudden stroke.

We had been married for just over 1 year before Nathan had his stroke. As a young couple in our late 20’s, we were still in the honeymoon period, with grand ideas to travel the world without any responsibilities, in the company of each other. My plan was to work and travel until I turned 30 and then start trying to conceive.

However our brush with mortality has forced us to focus solely on Nathan’s health and recovery from stroke. The idea of children was the last thing on our minds. Nathan still has lingering affects from his stroke, most notably his left sided weakness. He is also on medication which may have an impact on his fertility.

Having children is such a life changing experience for any couple to look forward to. Most stroke survivors that we’ve met or spoken to have had children prior to their stroke (if there are any other stroke survivors or their partners out there who have had children after a stroke we’d love to hear from you). We have so many questions, worries and doubts about how things will work, that the thought of not having children has crossed our minds.

What if we can’t conceive?
How would we deal with having a baby as well as dealing with Nathan’s ongoing recovery?
How would I cope being a carer, wife and mother?
How would Nathan be as a dad?
How will Nathan cope with looking after a baby?
Will we have a steady income to support us?
What will the child think of their father’s stroke?
What happens if Nathan’s condition worsens?

We had a plan. It involved both of us working together as parents to look after the baby. But now we need a new plan. I don’t know what that looks like at the moment. We’re still taking it one day at a time.

2019

Hello to 2019. A year that I hope will be one of progress, results and success for Nathan’s rehabilitation recovery and return to work. Not just for Nathan, but for all other stroke and brain injury survivors on their own road to recovery.

Since my last update, in December we’ve focused on the three R’s: rehab, respite and rest.

Nathan’s rehab is going well. He continues to attend physio, occupational therapy, speech pathology, Lokomat, gym and psychology sessions. His dedication to rehab has seen him progress to the point where he no longer needs his walking aid when out and about in the community. His lower limb is recovering faster than his upper limb. We’ve been told that the recovery of upper limbs does take longer (or in some cases may never fully recover). He confidence has grown in his speech and cognition, and he continues to attend work with the intention of increasing his hours this month. Nathan pushes himself in rehab everyday to hopefully achieve any sort of movement back. It’s tough to watch day in, day out. But every time we see some sort of new movement, we get spurred on and hold the belief that recovery can be achieved.

Since his injury, I haven’t left his side for more than a few hours. So when the chance to go away for a couple days to celebrate my friend’s 30th in Tasmania, I was both excited but anxious. Nathan’s brother flew over to act as carer while I was gone, however as I was used to his company and our routines at home it felt weird being away. I felt guilty for having fun and being away from him, as he was still stuck doing rehab. I did try to allow myself to enjoy the trip, especially as we were atop mountains and taking in stunning views. Looking back it was a well needed carer’s respite. To be able to care for someone you love in such trying circumstances, as a carer you need to be able to recharge and take some time out for yourself.

We did get a chance to have a restful break over the holidays. I drove 15hrs from Adelaide to Sydney so we could spend Christmas and New Years with family and friends. It was the first time I had ever undertaken such a drive as the longest drive I had done before was only 3hrs. Nathan was a confident driver and enjoyed driving long distance, so I would always let him drive longer routes. However, since his injury, he has been unable to drive. Flying to Sydney was an option, but I didn’t want to leave our cat alone over the holidays (yes, I am officially a cat lady). The drive was mostly uneventful (other then Neko pooping at the start of the drive) and we had a great time catching up with everyone back in Sydney.

The stroke has changed our lives in ways I could never have imagined. We have been forced to perform in areas we may or may not be comfortable in. We have been forced to confront the unknown in order to continue living. We have been forced into a unique situation and must continually grow and learn in order to adapt to our new lives.

 

An update of sorts

Changes have been slow.

Cognitively.

Physically.

We’re at 18 months now.

It’s painfully slow. Frustratingly slow.

Emotions run high.

I don’t know what else to do. I don’t know how else to help.

We’re both over it.

But we’re not throwing in the towel.

We’re living to fight another day.

 

Disabled parking

Public service announcement.

Please do not stand in the way with your door open and point at the disabled parking sign informing me that it’s a disabled parking spot that I’m trying to drive into. I already know that. That’s why I’m trying to park there. Please don’t judge or make an assumption of anyone trying to park in a disabled car spot. We wish we didn’t have to. I would do anything and everything to be in the position where my husband didn’t need to use the permit. But unfortunately he suffered a severe stroke that left him left side paralysed and we were told that he may never be able to walk or use his arm again. He’s had to undergo multiple life saving surgeries, had his head stitched closed multiple times, had to deal with an infection and has had to relearn basic things that you and I take for granted. He’s worked extremely hard to get to the stage where he’s able to walk with a walking stick, but things like fatigue and balance are ongoing issues that he’s working on. He needs a wide area to open the door the whole way so he can get out of the car. It’s difficult parking in tight car parking spots as it’s hard for him to get out without help.

So in the future, please don’t judge us or anyone else trying to park in a disabled car spot. Thank you.

Reflections as a stroke carer/partner

I have spent a week contemplating whether to post this up. Feelings and emotions are sometimes said or written in the heat of the moment. But this reflection comes from the heart and the grief following a loved one’s stroke.

My perspective on life has changed after Nathan’s stroke. But there are times when I sit back and reflect. I reflect back on what has been and what could have been. And I realise that some things may never happen again, because of his injury, because of what has happened.

I miss…

randomly jumping up on his back
getting woken up with a kiss goodbye before he goes to work
travelling anywhere and everywhere with such ease
exploring towns and going on hikes
walking behind him because he walked too fast
watching him play video games
being a passenger while he drives
holding his finger as we walked together
randomly going out for a drive into the hills
the lack of planning we needed when going out
coming home from work to find him playing with Neko
getting bear hugs
the intimacy
dressing up for date nights
exploring the city with him by my side
getting carried around when I got tired
going to the gym together
not having to worry when I go to sleep

I miss everything that was, my husband, my partner, my best friend, my lover, my whole world. However, we’ve both changed (for the better or worse?), our goals, focus and priorities, since his injury.

I hope, selfishly, that he will once again be able to pick me up and carry me on his back. I hope, selfishly, that he will once again be able to hug me with both arms, squeezing me tight in bed. I hope, selfishly, that he will once again be the husband that looked after me and cared for me. But in the meantime, I will unreservedly and without question be his wife, his partner, his carer, his anything and everything, so that he can focus on his goals and recovery.