This podcast was created and is hosted by Paul Burns, a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project.

Smashing it after stroke

Episode 3, 18 May 2022 (Duration: 49:44)

Host: Paul Burns

Nichola Browning is a registered nurse who has worked in both the UK and Australia. She’s worked in Critical Care, Neurosciences, Traumatic and Acquired Brain Injury, Rehabilitation, Paediatrics, Cardiothoracics and Youth Mental Health

She is also the Mum of a young stroke survivor, Beth, who suffered her injury at the age of 19.

We chat about the effect this had on her whole family, how she managed “burn out” and how she continues to move forward

Transcript

Announcer: This podcast was created and is hosted by a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project. Find out more by visiting youngstrokeproject.org.au.

Paul: Hi there. My name's Paul Burns. I'm a young stroke survivor and I am on a mission to talk to people that have suffered strokes and other traumas and have gone on to absolutely smash it in their chosen field. We'll chat about how they approach life, manage their shortcomings, and get a few tips and tricks along the way. Today's podcast is going to be a little different. My guest on the podcast today is Nichola Browning. Nichola is a registered nurse originally from the UK. She specializes in critical care, neurosciences, paediatrics, cardiothoracics, acquired brain injury and rehabilitation. But Nichola is also a mum of a young stroke survivor. We talked about the impact of her daughter’s stroke on herself and the rest of the family and how she navigated those challenges and what she learned in the process. So please enjoy this chat I had with Nichola.  

Paul: Thank you for making the time. I really appreciate it. I'm sure you’re a very busy person, based on the little I already know about your history. So, I mean, it seems that you've got a pretty wide-ranging history, work history, you know, from a nursing perspective, you know, critical care, neuroscience, traumatic and ABIs (acquired brain injury), rehab, paediatrics, and the list goes on. What drew you to those things?  

Nichola: Well, thanks for having me, Paul, and it's lovely to support your project and your podcast. I think it's just fantastic. And we both know we wish we had these things to listen to when we were on our journeys, I guess, with our own loved ones.

But yeah, I guess my nursing career, I'd always from being a little girl, I think my grandfather was very sick in hospital with cancer and ended up in palliative care when I was probably just still at junior school, so I'd been about eight, I think. And I remember being quite fascinated in the hospital, and, you know, as children do, they watch, they listen, they take it all in and I decided at that time, I want to be a nurse when I'm older because I met some lovely, compassionate and caring people that made me feel safe. And they were just taking such good care of him.

And then that continued really that journey through my life. My grandmother had a traumatic head injury. Again, when I was in my teens, so that kind of really triggered my interest in, I guess, neurosciences. And so, again, stayed on that kind of path of, yeah, my ambition was to be a nurse one day. I wasn't academically very strong at school at all. So, I really had to work hard to get to that point. I had a supportive family, and I did lots of other things at that time. So, when you went for your first job, I went to work in a nursing home, I did things that I could do, even before I got into nursing.

And then I was successful to get my entry to nursing in Sheffield in England and started my journey at 18 and I qualified at 21. We were the first of the new training for nursing, where it was getting more along that degree and academic side, so we were like a pilot in that time, in 88, and it was the era of, we went to so many very historical buildings that were old, old hospitals, we didn’t have the new hospitals then. And you went to every hospital, and you got experience across every specialty.

And in my final year I chose, because of my grandmother I think with head injury, to go to the neurosurgical, neuromedical and high dependency ward, and I got my first staff nurse position there. And that’s where the journey began really in that neuro space. So, yeah, it was definitely a baptism by fire they call it, but I had some fantastic mentors and sisters on the ward.

It was very different at that time, but because of that, I really got a privileged, I guess beginning, in my nursing career to looking after people in that neuro space who needed so many different things, including having ventilated patients and sedated patients at the very beginning of their trauma or acquired brain injury. So, yeah, it began there, and it’s never stopped.

And I moved around different parts of the UK, because it wasn’t so spread out. So, you know, you’d go to the top end and the bottom end, north and south, and you could move around. And I embraced that opportunity I think, and I chose to go to paediatric wards and specialise. And yeah, I did babies, and worked with very sort of sick newborn babies for a while, and that was more a cardiac unit. So, that was my journey, that was my main part of my career.

And then just before I had children, I then got involved in, and set up a neuro rehabilitation unit with a rehab consultant and a neuro psychologist.  

Paul: So that would have been with all the spare time you would have had. Nichola.

Nichola: Oh yeah, yeah, you know, it's interesting you know, sometimes I haven't always chosen where I was going to go. Opportunities arose as well as kind of your career progressed. And when you’ve got quite diverse experience, it was like, oh, you know, would you be interested in coming and taking on this project? So, I did. I was quite young as a manager at that point, so you get your clinical experience, but that management experience to really be responsible, and working in that kind of independent sector was really that was probably one of my biggest learnings of my career. But I'm glad I did it, I learnt a lot, and then I had children and then over time we moved overseas.

Paul: Yeah, I was going to say, and then in among all of that, you obviously found yourself here, your background is clearly not in Australia, and you moved over here with an eighteen-month-old and a four-year-old. Is that correct?

Nichola: Yeah, it was.  

Paul: How did that happen?

Nichola: Two children and two suitcases is literally how we came to Australia in 2004. I actually applied for sponsorship through the hospital because Royal Perth hospital were looking for nurses with my experience in neuro, so I actually got sponsored by Royal Perth and went to be a clinical nurse at the State Head Injury Unit there. So again, that journey and still staying in neuro was very much yeah, a big sea change for us. But having children.

Paul: I was going to say! But you did it, I mean, I've got little kids at my place. I know how challenging that having little kid little people around can be, and you did it and thought, let's just go to another country.

Nichola: Yeah, yeah. Yeah. Why not? But you know, we originally said let's go for a year and see how it goes. But then after that year, I got offered a permanent position. My husband found work and we actually hadn't done as much in that year to travel around Australia. Perth was amazing enough and we just said we’ve got so much more we want to do. So, we stayed, and we've not gone back, and we've been here 18 years now. So, I mean I feel really privileged. WA and Australia and you know, just the people that we've met, we do have a Perth family now. You miss your own family. That's a challenge. I'm very close to my family, as are our children, but we've had some really beautiful times where they've come, they've been able to come and see us. We have gone back to the UK occasionally. If I hadn't been able to go back and have that means it probably would look different you know, separating yourself from your family is a challenge. But yeah, community is really important.

Paul: I was going to say, look, I've got a little experience in living overseas and I know how challenging it could be to acclimatize to. I mean, yes, we both speak English, although it's debatable whether you say Australian’s speak English. I’ve said that to a few people from overseas, but I mean, there's always a culture difference when you move to a new place. I mean, there's a culture difference between Melbourne and Queensland. I mean, yeah, with two little ones on board and a new job, I mean, how did you how did you find it? Was it a, was it a rough transition, integration or did you, did you pretty much you just got on with it, and it all went relatively smoothly or?

Nichola: It's a good question really. I think I think it changed constantly. I think because my husband and I were doing it together and, you know, we did embrace it and look positively on everything we were experiencing, and we had to put ourselves out there a lot. I think you know; you don't just make friends overnight. So, I'm a pretty chatty person as you know Paul. And being a nurse, I was lucky I was at the hospital, and you meet people in your workplace and especially in health care, people are from all over the world. So that's really special as well.

And I think that's one of the most amazing things about working in health care. It's not just the patients you meet from all over the world, it's the staff as well. So, I guess, yeah, it was difficult because you're away from your family. So, what we did do is we had a wonderful nanny because I couldn't possibly have done it all. She became very much part of our family, and it meant I could breathe, go off to work. And she did what I would do, but I was lucky enough I still had a quality of life that we spent time on the weekends and Dad was there.

So, I think, yeah, surrounding yourself with good friends, good family and a lovely community. And we got involved in everything we could, you know, surf club and, you know, we were doing all of the, you know, getting out to the beach and the river and we'd volunteer in the community. And the school communities have always been really great, you know, wherever we've gone. So, I think we moved every year for ten years before we even came to Australia.

So, we were used to changing you know, and moving around and yeah, it was, it was nice. But it gets to a point where is you realize you have settled and your social goes so big and you're trying to keep up with so many people both here and the people you've left behind that that can get tiring and you know, yeah, you do, try and that energy as a mum to make sure your kids are settled.  

Paul: Oh yeah.

Nichola: But I loved it, I did love it and I embrace it and I'm still the same today. But it is. Yes, you need a lot of energy to keep it up.  

Paul: Yeah. Have you always been that sort of, and I'm not sure if ambitious is the right word, but there's probably an element of that, you know, ambition and, you know, just open to new experiences and opportunities. Have you just always been wired that way? Or has it been a gradual thing?  

Nichola: No, definitely a gradual thing. I mean, my parents travelled a lot and they worked hard and they well, they even were running a pub at one point when I was a little girl. And so, they were very community orientated people. So, I think their values of hard work and being kind to people and if there was someone in need or needed help. So, I think that's within my family. We've always been, yeah, I guess those kinds of people, you don't ever shy away from a conversation.

Paul: No, no, no.

Nichola: Your home is always open. Mum always said our home is always open to people when it's going well, but also when it's not going so well. So yeah, I guess I was a bit of an old soul and I'd often go running around and we’d go on holidays, and I'd come back going, I've made a new friend and Mum still laughs about it now, so goes Nich you’ve never changed. So yeah, because people are amazing, you know, every person you meet’s got something else to share. And yeah, I do love, I love meeting new people.

Paul: Yeah. So, I guess you know that open door policy and you know, I guess you mentioned, you know, good times and bad times and then 2019 rolls along and we've obviously had some challenges. You know, Beth had her stroke.

Nichola: Yes, she did. So, it was the time where, so we have three children as you know Paul, and Beth was 19, her sister was 16 and her little brother was 12. So, life was very established, and she’d just left school and was at university studying nursing. Um, and yeah, everything changed in a moment, really. So, I know you know some of the story I can share a bit more if you like Paul, but -

Paul: Yeah please!

Nichola: Beth’s shared her own journey.  

Paul: Yeah, look and I’m happy to, I think people would like to hear it.  

Nichola: That difference of a young person, I think. And even to me you know, I'd worked in this field for, well 34 years I've been in my career both clinical and non-clinical and but when your daughter arrives downstairs one night with horror in her eyes and she can't speak, and she's lost her speech. That's pretty much what happened. And that happened with no signs. She was previously fit and well. So, there was nothing underlying, she was living her life. And then the long and short of what happened was I recognized the signs and so did my husband. Tried to reassure her. She knew herself, there was something very wrong.  

Paul: Yeah.  

Nichola: And we called an ambulance and took her to hospital and spent the next two weeks in hospital. Her speech did return, she lost that speech sort of overnight. And then it slowly started to reform. But she was struggling with words. And even when she's tired still to this day, two years later, sometimes she'll muddle her words, not the other people who don't you know, who don't know her history they wouldn't notice.

Paul: Yeah, same, totally the same.

Nichola: Yeah. So yeah, that's pretty much what happened. But it was I know you sort of said you know, what sort of happened before and then that immediate impact. It was terrifying. And no matter what knowledge you have, sometimes too much knowledge isn't great either, because you're thinking of all these things that it could be. I wasn't necessarily thinking at the time at all it was a stroke. I was waiting for someone to investigate and give me a really good explanation. But my role-

Paul: Did you get that? Sorry if you don't mind me interrupting.

Nichola: Yeah, yeah, we did. But it took a while to get the diagnosis through. We spent a lot of time in ED waiting. I got a bit impatient because her speech was still not coming back, and she was really frightened, and it would come and go.

And why were we sitting in a waiting room with a 19-year-old at that stage, I don't know. We did wonder and we’ve talked to other clinicians afterwards and they said, you know, that sort of triage and night-time and out of hours, sometimes things can be a little bit different, but the care that Beth had, and we had in the hospital, yes, people gave me the information. I asked a lot of questions because I had knowledge. So, I probably asked more questions, you know, that were appropriate to get the right response.

Paul: I guess it goes to show how critical having an advocate is.

Nichola: Absolutely, yeah, and Beth couldn't speak, so let alone write she couldn't do anything, so I absolutely became her voice from the minute we walked in. But that was reassuring for her as well, I suppose. Like she said, at least she knew, I knew you knew Mum because this is your, you know, this is where you've nursed.

So, she felt safe in that moment to at least say, right, I'm going to stay with you and, and yeah. And when we were up on the wards, we had some great people doing assessments, the clinical team all the OTs, physios, speech therapists that came to see her, they were all very compassionate and the medical staff. I think the challenge that Beth had most of the time was that I don't think people realize the enormity is, and this is what health professionals can do, she was 19. And she was surrounded by older patients.

And I think sometimes the language, sometimes the assumptions that were made by the clinicians, I would often say to them, Beth, do you want me to be here? While, you know, they're asking you questions. She was a young adult, there might be questions they were going to ask that were private that she didn't want me to, you know, be there for.

Now luckily, we had a really close relationship prior, and her Dad and I and sister and brother, we are a close family. So that probably helped because when you know each other well, and you’re close, those things are almost a little bit unsaid. I only needed to look her in the eye, and I’d know what she might need, you know, when she's fearful, anxious, exhausted, and when she hadn't remembered because she was so tired at that time, which you will remember, Paul, it's such an exhaustion. And I think there's some things she still doesn't remember to this day that were spoken about or how things were. So, I would go to appointments afterwards with her because I'd have to prompt and remind her because she’d go, I really can't remember that.

Nichola: So that's a heck of a load I mean, you know, you've just we've just gone through your career and, you know, where you have gone and, you know, you're in a new country and I mean, obviously time has gone on.

Nichola: Yeah.

Paul: But I mean, the impact on yourself, and the impact, I mean, you know, it's great that, you know, advocates can help, but you know, that comes at a cost for everybody. I mean, what was, the impact on the on the family unit must've been something. And yourself.  

Nichola: Yeah, it did. I think you're on survival kind of mode for a very long time. And I think Beth in particular, she wanted to get back to normal. She was a young student; she didn't want to think for a minute she wouldn't be heading back to her nursing career.

So, we learned to walk alongside her, and she would tell us what she needed, and some days she wouldn't know. And the difficult days, I think were in that kind of period, Beth had to wait for heart surgery as well because she had a blood clot that went to the brain because she had a hole in her heart that we didn't know about that.

But it's very straightforward surgery nowadays, but that doesn't take away from a 19-year-old saying, you're going to go in my heart and do what? So, we had that, and you were asking about the things that you sort of carry. At that time, my father-in-law passed away, and between Beth’s stroke and heart surgery, my husband had to fly back to the UK. So, there's lots of things that kind of go layer on layer and looking after the brother and sister, you know, who, is my sister going to be ok, and constantly explaining my mum who is in her 70s is in the UK and my sister and brother-in-law.

So, you spent a lot of time reassuring family, talking to friends and explaining what had happened. So, you're on survival mode, but there's a lot of talking and explaining to others and you really, you are in a blur, I think. You just keep going.

Paul: Yeah, you can only do that for so long though until something goes sideways.

Nichola: Yeah. And I think that it was the first year Paul, once Beth got back to study, she was navigating a nursing career, we were trying to be positive, and she wanted to travel with friends and do wonderful things. However, COVID happened then.

So, in the middle of this, COVID happened. I was at work all this time. I took a very short amount of time off, because I thought everything was fine, and I carried on ploughing through that year. But pretty much we went to working remotely from home. I was working in a youth mental health service at the time.

Paul: Oh, because that's a stress-free role!

Nichola: Yeah. Yes, it's, I was very again very privileged to work alongside a lot of incredible people and everyone was on the same kind of page with what we had to do during the pandemic. I was non-clinically, I wasn't client facing, but working with those people and having worked in a mental health setting, you understand the challenges that people face. So I think things crept by about I think the August, I think it was and I had had a difficult time prior once previously in my life where I probably did burn out.  

Paul: Yeah.

Nichola: And there have been different episodes through my clinical career. You don't work in critical care for those many years and everything's fine. That compassion, that acuity of working in those settings, we don't always put ourselves and front and centre to look after yourself. You're giving, you’re caring, and life's going on alongside that. And I yeah, one day I just got really teary.

I was emotionally exhausted, I was physically exhausted, and I thought, I need to go and see my GP and I knew what I needed to do and spoke to my husband, but I didn't really listen to probably the signs that were creeping before that.

There was a lot of uncertainty at that time, and I probably slid within my love for my role at work. I think when something major happens in life, even when things are getting better and there's positive things during that recovery time, it doesn't undo what you've been through during that period of time. When you see your child goes through that, even though she was an adult, you can't you, can't yeah, I guess, dull those feelings and worries.

And I think there was a lot of periods of anxiety following. What would happen? What does life look like after this? You know, Beth still suffers with a great deal of neuro fatigue. You know, how’s she going to cope with that in the nursing profession, that I know what that's like. But she's now learned so much and she shares so much with us. And if she says she's got it, we go, great, because you do have to find that positivity and say, wow, look how far you've come.

So, we were looking at how far she'd come. She'd almost just got to this next space that, she's incredible to me and the people that she shares her story with. She wants to make a difference and she wants to share that story and her lived experience and so do I. But then at that point, a year on, I think I probably could ok I can let go now, I can breathe. And then all those emotions that you held on to creep in.

Paul: Yeah, and how did you I mean, how did you deal with that? I mean, I guess, you know, a lot of people out there, you know, both that, you know, in stroke community and the world at large have this view, you know, nurses and doctors are bulletproof. Right, they get around with suits of armour and, you know, they're the heroes of the pandemic. But and then, you know, you throw on top of that, you're also I don't want to say carer because I don't want to give it the wrong connotation, but I guess it kind of is, you know, you are an advocate. Maybe that's a better word for it.

Nichola: I think caring. I think I think you've hit it there on the head because carers, you put so many hats on when you’re caring.  Beth’s stroke was a turning point, and it really made me revisit why I'd gone into nursing in the first place. And yeah, I think being human and letting my walls down, burnout did that to me. It made me actually say -

Paul: Forced your hand?

Nichola: You have to stop, and it did force my hand. Yeah, you've got to rest, you've got to recover. And I did seek professional help. And I saw a psychologist for a period of time, and I'm very comfortable and open to talking about that because it helped and, maybe I hadn't done that enough in the past. And if I had and I'd seen some of those warning signs before and I’d listen to myself then maybe I wouldn't have sort of got to that point this time.

So, I think, I also met an incredible person through my network and a tribe of nurses who were all looking to prevent burnout, raise awareness of burnout in nursing and health care. And they, Athel shared his lived experience. And I literally read his lived experience and his story one day and went, that's what's happened. Because burnout in my generation, we had debriefing and we had clinical supervision with, you know, your managers. But I don't think there was a language about burnout that was ever spoken about early in my career, and I certainly hadn't educated myself until more recently. So, it was a relief. And he and I have become good friends now. And I've done some personal development and some professional development to help me through this period. And it's been great.

Paul: And I think that must be I mean, that must be very I mean, you're very, you know, fortunate being having the background that you've got, that you've got that support and you've got that insight to recognize you know, something.  

Nichola: Yeah.  

Paul: As huge as burnout and, and that from the nursing side of things. But I guess you've also got the carer side of things as well. Did you get any support along the way in your role as a carer or did it just sort of cross over? Because, I mean, look, I find and I can say this because I'm a survivor, all of, you know, all the attention is on us, you know, it's - help the survivor, help the survivor, help the survivor, you know, which I'm eternally thankful for don't get me wrong, but you know, it doesn't seem to be from, you know, a lot of emphasis placed on, you know, sort of the carers and what we can do to support the carers.

And I mean I heard a great analogy and I think might have been someone from the Lived Experience Working Group and I forget who’s name it is, so I'm sorry if I’ve misquoted somebody, but they said you know, when you have a stroke or an injury or something like that, it's like chucking a pebble in a pond. Sure, the biggest splash is at the centre, but that thing ripples.

Nichola: Yeah, it does.

Paul: And I mean did you find in your capacity as a carer, did you get support around that or was it sort of less so less well understood?

Nichola: I think it's interesting because that word carer, I’ve uses that word throughout my career. I didn't necessarily see myself as a carer because I'm a parent and I was mum.  

Paul: Yeah, comes with the territory, right?

Nichola: Yeah, absolutely. So, and but I had, I was very aware of carer stress and burnout in carers because I'd worked in community aged care, I'd worked in obviously hospitals and health care. So, you are very aware of what loved ones are going through and that can be a friend, a colleague, a partner. You know that there's a lot happening when you see someone you care about lying in a hospital bed and, and I've always, when I was nursing, checked in on family, tried to get to know people.

But I must admit our experience with Beth, and then I think because they knew I was a nurse, she was a nurse. Maybe there are, like I said, about some assumptions that we were ok and then we were asking questions. So hopefully we had the right information. But I don't think anyone really did say to me, how are you and how are you doing? I don't really remember that time, but maybe because I also looked like I got it. You know, so if you're not displaying emotions, you know, maybe people read it that we were doing ok, and we were in hospital only for a short time.

Paul: Ok.  

Nichola: But when we came home, I think it really was for such a long time, I don't think I knew what I needed either. It was very much all about Beth. It was about me making sure what do my family need? How’s my husband? He was my support person. So, I think if you've got other people around you and, you know, we kind of were a team, and those things work well, but there are plenty of families that don't and you’re very much on your own.

And I didn't have my extended family. So not having my mum or my sister, you know, here because they were overseas, it does leave a void because they’re the things that people do don't, they, they cook your meal and drop something round and, but I had some lovely friends you all offered, but I probably that's the point that I did start to retreat and that was definitely the burnout probably stepping in. I went to work. I kept home running. Husband and I carried on doing everything as we were doing it. And then I started to go small, and you start to withdraw maybe from seeing other people. I felt quite fragile and a little bit teary and then I didn't want to go to things as much. So, again, it relies on you reaching out to ask for help very often because I think it's very difficult for people to know how to help.

Paul: Sometimes they don't know they need to help. You don't know what you don't know, right?

Nichola: That's right. So, some I mean, yeah, it's a difficult one and I'm now a lot, now I understand myself more and what I've been through, I can put into words how I am. I can now explain to people maybe where I was. But people did do some wonderful things. People were very kind. So, I kind of knew they were there. And I think if you just know, it's like that scenario of just saying something there’s never the right thing or the wrong thing, reach out anyway and that's enough sometimes.

Paul: I think that's a really important point that you make there about, I mean, I know I've sort of experienced in my situation, there's almost an awkwardness about the whole thing. People wanted to, but they don't know what to say.

Nichola: Yeah.

Paul: And they don't want to, you know, well, do I say something or is that going to make them worse, or do they just want the distraction? And so, they, you get this awkward, hi, and so I think to even just publish that out there, you know, have some kind of conversation.

Nichola: Yeah, if people know you care, just, just, you know, hi, I've been thinking about you, you know, and -

Paul: That means so much.

Nichola: It does, it does. And people hear the compassion in your voice. There's never a right thing or a wrong thing to say. And, and yeah people were wonderful. And at work, it was the same thing. And that's an interesting part as well that I look back on now. I was so good at coping. And you talk about what have I been like, I've done that since I was probably a little girl or you know, since I was an 18-year-old, I've always kind of been resilient.

Paul: You’ve always been pretty resilient by the sounds of things, yeah.  

Nichola: And I had some tough stuff that I went through during my childhood, and my adolescent years and then through high school and teenage years, it was not easy. I had some pretty unpleasant things, you know, bullying at school.

And I think I was determined to be a person that always looked optimistically at life. And things can be difficult, but they will get better, and I think, yeah, I didn't really, through work, I've always been a very professional person, but not standoffish, and I've always been quite private. And that might be a little bit of my old fashioned that I'm very private.

And you don't always feel that you want to trust and open up too much. I'm always interested in other people, but to actually talk about yourself, like even doing these things Paul honestly, a couple of years ago, I wouldn't have dreamt about talking about myself and, you know, even sharing these experiences, but I've now realized it's very, very therapeutic. It's healing and it's, it’s ok to be vulnerable and to share that. Yeah, it's a good thing.

And I wished I probably had done that work a little bit more. Everyone was really, they were great. But I looked at everybody else at that time as everyone's got so much on, I didn't want to burden other people, and I think it was burdening people more than shame, but I don't think I was ready to go there. I felt so exhausted. I felt so vulnerable. It's almost like you don't want to crack. I can't because, if I let it go, I'm opening the floodgates and where's that going to stop?

Paul: And I guess particularly in a workplace, too, I mean, you can have the best workplace on the face of the planet, but no one wants to air their dirty laundry.  

Nichola: That's right.  

Paul: You know, and I mean, even if there was ever going to be an environment you could do it in, you would have to think it would be the medical professional. But totally get it. I mean, you know, again, nurses have got that thing, you know, of got to be tough, like.

Nichola: Yeah. And I think I was worried that people were going to say, well, what do you need? What can we do to help? And I didn't know.  

Paul: Yeah.  

Nichola: Whereas, you know, I almost think now that sort of that experience of burnout and support crew. That's why I think us talking about it today is really quite helpful.  

Paul: Yeah.

Nichola: Because had I have understood how it might affect me as a parent. Beth didn't have any physical effects sort of following her or challenges, you know, hers wasn't physical. She has a neuro fatigue, and you know, and she had mental health challenges. So, I think there was so much hidden, you looked like everything had gone back to normal.  

Paul: Yeah. I mean, that's a challenge in itself, not to take away from anybody else's challenges. But invisible injuries are a whole different bag of cats.

Nichola: Yeah. And I think that when, for me as well, there's a lot of things that Beth and I have talked about now quite openly and gone, wow, it's almost quite similar what the carer or the parent or the support person is going through. But I look at some of her feelings and some of the way she dealt with it, but her resilience because she was young and she's at the beginning of the career and at the beginning of everything, looks very different to maybe myself and where I was at.

So, I've learned so much from her as well in this time, but we've been open, but then at the same time, now life's getting on, I'm doing my thing, she's doing her thing and she doesn't need me to advocate for her. She's a strong independent woman now, living out of home, and she's about to start her first qualified position.

So kicking goals and probably she's at the same place as I now feel like I've recovered from my burnout. I've rested. I took a year off work, which was a huge impact, and that was a worry for me. And I don't think I really looked for information on that.

How are carers, you know, did they have to try and work while they were doing, you know, the supporting role, you know, while trying to raise young family and young children like you have Paul so, you know, we've talked a little bit about that because what was your experience? I imagine that even though I'm mum and you know, you've got a similar experience, you've got two little ones at home, you’re still parenting, while you are supporting that other person, with life and life's continuing.

Paul: Yeah, absolutely. I mean, I guess my situation is probably, you know, like everybody's a little different. I mean for quite a long period of time and there's probably an entire podcast just in this one. But, you know, my wife has become, you know, I wouldn't say single parent because that has a different connotation, but a sole parent.

Nichola: Yeah.

Paul: Because due to my issues, you know, noise sensitivity, cognitive overload, all those things, I've got a very. I've got two boys. Now anyone that has two boys, my boys are eight and four and they're two young boys. I mean, they particularly the four-year-old, always going, you know, never stops, you know, very noisy and, you know, yeah, I've got a lot of my wife has had to pick up my slack on a lot of different levels. And that's why I think, if you get anything out of this podcast if anyone is listening to it, I think the one question that we have to start asking is who's caring for the carers?  

Nichola: Yeah.  

Paul: Yeah, because without that, you know, what's the old adage about putting your own oxygen mask on first before putting it on somebody else?

Nichola: That’s right, yeah.

Paul: I mean, you can't help, you know, you have to, a carer has to give a certain amount of energy to the person they're caring for and if their bucket's empty-

Nichola: That's right.

Paul: It's no good for anybody. So yeah, I mean.

Nichola: I think it is and that's been part of this journey of resting and resetting because yes, I should have known that I should have been kinder to myself, and I was important in this.

Paul: Oh yeah, it's easy to say.

Nichola: Exactly! And you know, but I have started to take the time to slow down. I have since I was a child, I'm running. I'm always thinking about the next thing I am.

And I suppose it is. Yeah, it's ambition. It's enthusiasm, embracing life, you know, all those characteristics. But wanting to challenge myself, so the next thing. And I love to learn and, you know, I'm always reading and, you know, like I said, you talk to people and it's like, wow. And you can have a whole conversation about a subject that you don't know anything about, you know?

Paul: You're such a positive person, Nichola. I mean, you've obviously been through the ringer on a lot of different things. And, you know, we've skated over the surface of a lot of stuff.  

Nichola: Yeah.

Paul: A lot of people sort of say, I mean, everyone sort of says, you know, it's important to have a good mindset. How do you do it? I mean, to say having a good mindset and then, you know, that's easy to say, but yeah, how do you do it? How do you maintain that mindset.

Nichola: Well, and I don't think it's the same every day. You know, I have good days and bad days and I'm not perfect. And I think I've listened to a lot of people who've shared some great wisdom. And if I look back on all the, I can't imagine how many lives would have touched my life in working in hospitals and health care that I think, I seriously think I would have taken something away that that helps you understand maybe yourself that when something like this happens, you know, you still.

Yes, you know that, you know, there isn't always a great outcome. There isn't always, you know, life's not full of roses, but there's so many wonderful people that show me and give me great faith in the world and life and there's some incredible things in science and health professionals now that so want to do the best for any patient anywhere.

Paul: So, you stay positive by inspiration?

Nichola: Yeah, I think so.

Paul: Yeah? That’s cool.

Nichola: Yeah, well, look how far, you know, science has come since I started nursing. And, you know, I look at some of the videos that are being shown about, you know, recovery and some of the mobility, you know, that's being done. You look at some of the programs, research, that’s all really exciting, and we just want everybody to know about everything.

I think the hardest thing for me is there's so much out there that's great, and that's why we're both involved in the Young Stroke Project. But we have to be sure that people can find it. They can find their peers, they can find other carers, they can find other young people who've had stroke, so that they can get some hope and positivity. But some understanding of today, it might be like that but tomorrow it can be like this, you know.

Paul: I was having this exact conversation with my eight-year-old about, you know, obviously I tried to do it in eight-year-old language but is it a case of, you know, you really do become what you consume? I mean, if you spend your whole days are zombie scrolling the age and news.com and reading all about the horror in the world.

Nichola: Yeah.

Paul: Or you can choose to consume things that are, you know, inspirational, you know, and is that is that how it is or is that an oversimplification.

Nichola: No, I think there's always someone you can help and make a difference to. And if you're if you're giving back anywhere, you feel great and you get something even more. So, if you give, how you feel in that process is, and it doesn’t have to be, it’s not about you, this isn’t about me.

But if, like you’ve said, one person hears something that makes me go, ah, I need to really have a think about, you know, where I'm at. And it's okay for me to say I'm a carer, or I'm a parent and I'm finding this really hard, we're not invincible.

But it is okay for me to be, you know, down and crying and really struggling one day, but I can be positive the next day and go, ok, so now what's this new beginning going to look like, but you do need to rest, recover and get help and support because I think the main thing is nobody can do it alone. And if we think that we can, then it will come and bite you in the bum one day, is what I’ve worked out.

Paul: Yeah, yeah. Someone else I've spoken to said that there is a, you know, in any of these sorts of things, there is a debt, you are racking up a debt and one day someone's going to force you to pay.

Nichola: Yeah, yeah, absolutely. And I think that, have faith in the world. I mean, I think that there's a lot of stories that people are sharing and experiences about, you know, things even pre-pandemic to how things have been now.

And I think, you know that neighbourhood, that community you know, that stranger on the train, whatever it is, you know, I think everyone's been through so much. Everyone's story is different. And, you know, but you've got to have faith in the world that, yeah, we're all there to make good things happen. And Beth was very much, I think that's why we've gone on the journey that we had because we found out about the Stroke Foundation when Beth left the hospital and we had a little pack and information and she said, I think I'd like to do something.

I'd like to do sort of some fundraising. So that's how it began for us. It was actually, we ran an event, and we did a walkathon in the stride for stroke, and, you know, got a huge supportive community around us. And we raised some money to give back to the Stroke Foundation because it meant that negative energy would be turned around into something positive. It was probably a timing thing. Whether I think that helped, it did help, but it was exhausting time doing an event. But I'm really glad we did. And the main thing was we raised awareness. You know, you've got, you've put awareness out in the community. It does happen to young people. When we did that event, we had someone who was a little boy who's a little stroke warrior.

Paul: Yeah.  

Nichola: You know, there was Beth at 19, someone else who had there’s at 30, someone at 40, someone at 50. So, it showed you stroke really could affect anyone at any time. And how in one community, you know, almost a couple of postcodes. That's the impact. But there was positive stories to share. And the little boy who Beth met, she actually ended up doing some babysitting for him and he really got a real sort of, something his Dad once told me months after where I just bumped into him one day and he said he got a lot from seeing Beth, as that older person, so you go how that, how perfect’s that, you know, yeah, he's this little boy who’s just running around living life to the full, doing everything and anything. So, I look at him and go, yep, that's where you realize anything's possible. And we should, we should probably see the world through the eyes of children, I think.

Paul: Yes. Yes. Although some days I don't know what my four-year old's thinking. Maybe not?

Nichola: Yeah, maybe not.

Paul: There’s a lot of Pokémon in my experience, and I'm not sure I'm ready to go there Nichola, but yeah, I'm I mean, that's an amazing story. I guess, and the question I always ask everybody when I chat to them is and I guess coming from a carer's perspective, you know, if you could offer yourself or somebody that's just had this happen to them and you know, give any, you know, key advice, key actionable nuggets of wisdom, what would you say?

Nichola: Yeah. I think probably for me is, I didn't reach out to the Stroke Foundation, or even call StrokeLine, I did it all myself and tried to find out things myself and you know, would sort of search up things for Beth or if I had some questions that weren't answered where because I think maybe I thought, oh, things aren't that bad, we're going to be ok, we know what we're doing. But I really wish I probably had reached out as that parent and carer, but not really understood the benefit of StrokeLine and the Stroke Foundation and the support that was there. So yeah, that's probably the first thing. If you really do feel like, you just need to talk to someone, you know, picking up a phone and actually not seeing a face and speaking to someone you know and they’re health professionals who, it's a trusted and safe place, then I think just ring up and have a chat. I think that's probably the first piece of advice. And it's okay if you need something.

Paul: Yeah.

Nichola: And if even if you're not sure, maybe someone else has got the experience to share with you what they think you might actually need, to keep going on that journey. So, I think that's probably two things. And I think I mentioned earlier, you know, everyone's recovery is very different.  

Paul: Yes.  

Nichola: But we can still learn so much from one another. And having met you all through the Young Stroke Project and yes, I was a parent, you were people who had survived, and I know Beth has she got a great deal from being around people who it was all different, but you can take that wisdom and you can find, like you said, those little nuggets of, that was really helpful.

And because it was, yes, it was the tough stuff. You talk about the tough stuff, but there was so much positivity as well that was also energizing when you needed it, which for Beth, I think when you’re there and she felt a lot of information was more around older people, I think then coming to a young stroke space, then that started to help and it gives you hope and it makes you think of the future in a positive way. So, and I think, for me, listen to your loved ones, you know, we don't have to do everything, and we don't have to lead the way.

And yes, you go through that period as advocating, but it's also knowing when to step away. And it's funny. When in a strange way, I’ve called it a sliding door moment. But then I say to Beth, how weird’s that? That's when that moment happened. We have a little sliding patio door when she came downstairs, and that look of horror, it was a sliding door moment where she opened that door to me, and she needed me. But then there's other moments where it's like, no, I’ll close the door now, I've left home, I've moved out of home. I’ve kicked some goals and I'm going to be ok, but you know where I am if you need me. And I think that's the important thing. You don't know when you're going to next need someone’s support. And as family, you just say, I'm always here, you know? And if you don't know what they need, ask them  

Paul: Yeah.  

Nichola; And yeah, I think, just yeah, it's unconditional love. I think unconditional support, unconditional love. And yeah, you just meet them where they are. I think that's the last thing I would say. You just meet the person where they are on that day.

Paul: Yeah.

Nichola: Good, bad, ugly. Rollercoaster.  

Paul: Yeah.  

Nichola: And if you meet them where they are, you'll work it out together, I think. So, yeah. And if it's not you, it might be a friend, sometimes it's not us. That's probably the other thing I would say.

Paul: Ok.

Nichola: Not everybody wants it to be their loved one.  

Paul: Yeah.  

Nichola: I’m sure Beth’s shared things she doesn't want to share everything. She doesn't want to worry us. She knew what we were going through. The same as what she would share with her grandma overseas. She wouldn't want to worry her, that's a natural reaction when something happens, I think like this in your life. So, you do protect other people as well. And that's possibly what I was doing too by not going out too far to reach out. You don't want to worry other people and say, because you want to be positive and helpful and say things are going to be ok. You know, so yeah, meet them where they are, I think.

Paul: That's great. That is great advice. Thank you. Thank you so much, Nichola. That was a yeah, that was, there were some real nuggets of wisdom in there and it was absolutely lovely to talk to you today.

Nichola: Thanks, Paul. And if anyone ever wants to connect and reach out, I’m on LinkedIn and I'm on the Genyus Network Support Group and the Young Stroke Project, so it's always great to kind of build a community as well.  

Paul: Absolutely.  

Nichola: And yeah, we're all out there and we want to make a difference. So, thanks so much, Paul, for today and letting me be able to share my experiences and have a good chat.

Paul: You're very welcome. Thank you so much.

Announcer: This episode is part of the Young Stroke podcast series created by Stroke Foundation's Young Stroke Project. Find out more by visiting youngstrokeproject.org.au. You can listen to dozens of other podcasts on our Stroke Recovery website, enableme.org.au. StrokeLine’s allied health professionals can help you manage your health and live well. StrokeLine is a practical, free and confidential service. Call 1800 787 653, Monday to Friday, 9:00 a.m. to 5:00 p.m. Australian Eastern Standard Time, or email strokeline@strokefoundation.org.au. The advice given here is general in nature. Discuss your situation and needs with your health care professionals. The Young Stroke Podcast series is presented by Australia's Stroke Foundation and funded by the Australian Government Department of Social Services.