Transcript

Sophie: I had my stroke at the end of November 2020. I was 31 years old. It was just a normal, regular day. We had just not long come out of lockdown. There was just this kind of, like, exciting sense of change in the air.

Yeah, I'd just been for a run, had a coffee. Suddenly it was just like a flash of, I guess, light. Kind of just like hitting me in the face. Kind of like kaleidoscopes it's kind of hard to describe, but it was really, like, surreal and just disorientating and weird.

I've experienced migraines a lot in my lifetime, so I was like, this is just a really hectic migraine. It wasn't until the next morning when I woke up and my vision was still not right. My mum and a friend kind of encouraged me 'Oh, go to the emergency room.' They saw me, like, pretty quickly, and it all happened really fast. I was kind of like wheeled into a C.T. scan.

All of a sudden it was, 'No, actually, you're having a stroke and we need to remove the blood clot right now. We have to do surgery.' And I was just like, full-blown panic mode. I was petrified of being put to sleep. It was just a really chaotic experience. And it's something that I replayed a lot in my head for like, the months after it.

Yeah, my family is in New Zealand, so, you know, when they were like, 'Who can we call?' I was like, 'I don't know.' Immediately I felt really like alone and scared.

And I didn't know anything about stroke and I had no idea that young people could have a stroke. You know, I was petrified of what this would mean. They really wanted to get to the bottom of it, so, you know I was in hospital for at least a week and it was just like every test under the sun that you could imagine.

Even that I found really challenging. So every test, I was petrified of. Every result, I was just like so scared of. I was scared of the doctors. I was scared of everything. And then they found a PFO. So the hole in my heart and I was like, I'm never going to be able to run, I'm never...like, I'm probably going to die.

I was like, what is going to happen?

I guess I was "lucky" in that it was kind of isolated to that part of my brain, so it was just my vision. And then I experienced quite a bit of fatigue.

My vision hasn't come back. If it's improved, it's been really minor and I haven't really noticed, but I've gotten more comfortable with it and moving around the environment.

I do feel like it gets kind of worse when I'm tired and fatigued. I returned to running very quickly. I was very stubborn. It's, it's a massive passion of mine. And as normal, I would just go for a run.

Except the difference was that it would really trigger fatigue and because I was so stubborn, I was like, 'No, I will just ... I'll happily just use all my energy for running and then just deal with the consequences after.'

Which would basically be, I'd go for my run and then return to bed afterwards and just stay in bed for a large chunk of the day.

I was so desperate to return to the person that I was, and that is such a large part of my identity that I was like, I need this. I definitely rushed into it. I feel like for the first year, I was just like fighting against the current constantly, which in itself is exhausting.

I didn't know any other stroke survivors until I got involved with the Stroke Foundation. So in that sense, it was quite isolating. I think I made it worse by pretending that everything was OK, because people would see me, 'Oh, you know, she's running, she's getting a coffee at the cafe in the morning and she's fine. Everything's fine.'

But they wouldn't see, you know, that I'd go back to bed for the rest of the day. I struggled to, like, ask for help. I had kind of part-time work and they were incredibly supportive of helping me return to work, which I'm so grateful for.

Yeah. So I kind of eased back into work. Their values are really aligned with inclusivity and diversity, so it was no issue at all for people to make adjustments to me.

I did build up really, really slowly. Every time I did slightly too much, like, I felt it.

One time, I think I worked I think it was a couple of hours and then, even though I only lived 300 metres from there, I couldn't face that walk back to my house and I just sat out the back, just crying.

That's really been kind of my experience of fatigue, like, I push and push and push, and then as soon as it hits me, it hits me like that. And I, like, can't, can't do anything.

I did see a therapist, which I highly recommend everyone do, which was really helpful in those initial stages. My anxiety is really bad. It kind of built up and built up, and it kind of reached almost like a breaking point. And I got more professional support around it. I have tools to help manage it, but I still find it really, really challenging. I'm still learning the things that trigger it. I mean, I found medication really helpful for me to be able to manage it.

But yeah, it's definitely something that needs to be addressed and you need to kind of get on top of it, because it can snowball and become too much really quickly. I've really tried to get back to who I was and I've tried to hide a lot of my 'stroke survivor' identity. I'm going to call it an identity.

When things are not OK, I really struggle to communicate that with my girlfriend.

And, you know, because I want her to think that I'm "normal" and, like, everything is fine and I can keep up. I don't want her to have to change her behaviours or her life for me.

So when something does happen, like, you know, we go to a party and I'm... she's having an amazing time and I'm in the corner about to have a panic attack, you know, it's just really challenging and hard to navigate.

And, you know, I'm trying to recognise my needs so that I can communicate those needs to someone else. But it's a, it's a learning process for sure.

I think having an invisible deficit kind of puts pressure on the person with the deficit to choose how much they want to share.

You know, it's like, do I want to pretend that everything is perfectly fine and I'm fully recovered and it's, like, it never happened?

Or do I want to be like, 'Oh, no, actually there's still a lot going on - I'm still working through quite a lot.' My biggest advice at the moment would be to just kind of practice a bit of self-compassion and forgiveness.

Forgive your body, forgive yourself. Don't push it. Don't push against the current.

I would never speak to someone else I know the way that I speak to myself sometimes. I'm trying to take that on board a little bit.

Saran: So you're coming up to two years. How do you see that you're either going to celebrate it or recognise it?

Sophie: Yeah, well, last year I was really stressed about it because I was like, I don't know how I'm going to feel, I don't want to be sitting alone, mulling over my memories and my thoughts.

So I threw a massive dinner party. I was so preoccupied with the cooking and the planning that I almost forgot the reason behind it.

This year, I think I'm going to do a bit more reflection, sit with it a bit more. I'm going to run a marathon before it.

So I feel like my kind of relationship with myself, my body has kind of changed a lot in the last two years because, you know, I felt so angry that my body had done this and I felt let down by it.

And now I've kind of come to a better place. I've come to a better place with myself and with running and with my health. So I guess I kind of want to reflect on that through doing a big event, I think.

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