Shannon Nelson went back to work four months and three weeks after her stroke. She talks about her experience, how her workplace and colleagues treated her and what advice she would give to someone wanting to return to work.
Shannon says "In a perfect world, it should have been compulsory. But who's got time? ... I don't know whether there was a meeting before, with the staff to say about me ... But I think there should have been a team meeting with me to say what my deficits are and that sort of thing and then I get really tired. But that wasn't suggested either."
Transcript
Shannon: I’m Shannon. I had a stroke four years ago. It was my father's 70th birthday that day, so I couldn't speak for a week. And I was walking the next day. I was paralysed down my right side and then was raising my arm by day three. But I had no usable function in my right hand. So, I was in hospital for three and a half weeks.
Then I was discharged to ESD, in an early supported discharge program for four weeks. And then I was transferred to Community Rehab for about 5 months, so I had speech, community rehab twice a week for three months. And then I had OT twice a week for five months.
Saran: And so what were you doing before the stroke?
Shannon: So I was doing, I was working as a nurse in the nurse workforce unit at a major public hospital in the city.
So I was doing nursing administration. So I was facilitating nurse workforce competency days, once a month I was doing allocations. I was doing interviews. I was required. I was doing all the nurses competencies on bank and pool. So I'd ring them up and say your competencies coming up. Do you want to book in for the nurse workforce competency day? So, yeah.
Saran: So obviously you couldn't work, so what happened with your work?
Shannon: It was actually on the Monday morning and then Stewart rang the allocator who was on and he said Shannon has had a stroke she won't be in today. Because I usually got in between 6:30 and 7.
Saran: Right.
Shannon: And I was due that day and the allocator got off the phone and said Stewart said Shannon's had a stroke but I'm sure she hasn't had a stroke.
So, yeah, so I did work for, I returned to work after four months and three weeks. So that was really quick. But my ultimate goal, rehab goal, was to return to work. So they supported me.
Saran: With a return to work, set up?
Shannon: Yeah. No, well, I went through the Centrelink route. So, and then I got a company for my return to work.
So and then I returned and they were really supportive actually for my return to work. So yeah, they realised how much, they didn't realise how much stuff I did before my stroke.
Saran: Yes.
Shannon: Yes.
Saran: Did it also highlight to you how much you did before as well?
Shannon: Yes, yes, exactly, yep.
Saran: So how many days did you start with?
Shannon: So three days a week, 5 hours a day. And then I had.
Saran: How did you go with that?
Shannon: I was exhausted for the first week. But I felt as though it was the right balance. So I had, went to back to work Monday, Wednesday and Friday. So I had a day off between so I could do therapy on my days off. So yeah.
Saran: And so were you doing the same role or were you doing?
Shannon: Yeah. So I used to, well, yeah, I was doing the same role, so I did all my phone calls in the morning because I had, I still have, aphasia and verbal dyspraxia. So word finding is difficult when I'm tired and fatigued and stressed. And then verbal dyspraxia is defined as difficulty planning and coordinating the muscles used in speech.
So I used to do all my talking in the morning because my muscles would be fatigued in the afternoon.
Saran: So I know that, and I was affected physically on my left, so we had strokes on a different side. But I know that when I tried to go back to work in the first week, which is very dumb, so I really shouldn't be judging you, but I know that, you know, the idea for me going on the phone, obviously you’re, my anxiety was just … there was just too much. I just couldn't do it.
Shannon: So during my speech sessions, I actually practiced on the phone with my speech therapist.
Saran: Okay, that’s great.
Shannon: I used to explain what I did on the phone calls and he used to pretend to ring up. And so I'd say, nurse workforce unit, this is Shannon.
Saran: Yeah.
Shannon: What can I do for you or that sort of thing.
Saran: So obviously you had a good therapist, so that your therapist was able to sort of help you.
Shannon: Yeah.
Saran: … return to work as well. And so, did those days increase?
Shannon: Yes. So then I was on, about for a month or four weeks and then it increased to 6 hours a day, three days a week.
And then a month after that, it was 7 hours a day.
Saran: Wow.
Shannon: Three days a week. And then I had Christmas off and then I was back at work four days a week after Christmas.
So I had the Wednesday off and 7 hours a day. And then a month after that, four weeks after that, I was at 8 hours a day, four days a week. And then I was back at full time work after ten months.
Saran: So how did you cope with that? Like, I know that I thought that I was going well, but I didn't. I was sort of just existing around my family. How did you cope with it?
Shannon: Just went to bed early. Didn't socialize much at all in the first year. So I really wasn't coping because I went to bed. I’d get home, cooked dinner and went to bed straight away. Yeah.
Saran: Did you recognize at the time that you weren’t coping or is this own reflection?
Shannon: On reflection.
Saran: Okay.
Shannon: After I finished my role last year.
Saran: Yeah.
Shannon: On reflection, I wasn’t coping at all.
Saran: We are our own worst enemy.
Shannon: Yeah, yeah.
Saran: Yeah. Because your aim was to be the way it was, that was your goal.
Shannon: Yes and no. Because I ultimately wanted to return to work in the role I was in. But I knew I wouldn't be the same, but my colleagues expected that I was the same. But yeah, I wasn't the same. So I used to take, I did a sleep and fatigue study in early 2019, and they….So I used to have pause breaks every hour. So I'd walk away from the computer every hour.
And then I used to go for a walk and a morning break to get my coffee. Used to have lunch breaks at the same time every day. So and then I had a pause break at 2:00 in the afternoon. And that meant going to the photocopier, just walking to the photocopier. Didn't have to pick anything up, but just I walked to the photocopier and that sort of thing.
And go to the toilet and just put my, I’ve got a FitBit, so I put my pause break for 2 minutes and sit in because we had a shower with a bench in the toilet. So I’d sit on the bench in the shower and breathe for 2 minutes.
Saran: Okay. So you say that your work colleagues sort of still assumed you were the same. What experience? Give me some examples of how that was.
Shannon: Oh, they expected me, so when I was back at full time, I did two allocations shifts in a row. And because I don't think many people knew about my stroke.
Saran: Okay.
Shannon: I only, so my department knew, and HR knew, and the chief nursing officer knew. But I don't think they actually publicly, well, sent out a memo to say that I had a stroke or that sort of thing. But so I, the first week, back at full time work, I did two allocations shifts in a row. So my speech was absolutely shot by 10:00 the next day, the next shift. And I was talking to a unit manager, and I struggled with my words, I struggled to get the words out. And she said, are you alright? And I said, no, I had a stroke ten months ago and I'm just struggling with my words. And she goes, oh, I was going to call 000 and call for an ambulance I thought you were having another stroke. Because I struggled, I was slurring my words that much.
Saran: Wow.
Shannon: So yeah. So yeah, in hindsight, yeah. They didn't say anything to me, but I thought that they thought I'd be alright, but I wasn't. Yeah. Yeah.
Saran: On reflection, would you do it again? Would you go back to work that soon?
Shannon: I would, but I’d be more gradual. So I wouldn't go back after four weeks. I’d prefer it be six, and see how I go. So, yeah, not so quickly, but yeah.
Saran: And so you said that you have since left that job. So happened?
Shannon: They made me redundant.
Saran: And, how long were you then out of work before you were then working somewhere else? So give me the time.
Shannon: One week. So I'm back at clinical nursing work for a shift a fortnight, average shift a fortnight. And then my, where I go to OT they actually offered me a job three days a week, Tuesday, Wednesday, Thursday. And that's …
Saran: So you have two jobs?
Shannon: So, yeah, no, I had, I've got two jobs. So I do clinical nursing one shift a fortnight.
Saran: Yep.
Shannon: Through an agency. And then I do Tuesday, Wednesday, Thursday at the OT practice 8:30 til 4:30.
Saran: And so this is, you said this is the OT that you go to. So do you find that there’s more understanding of your –
Shannon: Yes, the OT practice is, well they do community and clinic clients. But it's robotics, so yeah. I work on my right hand. So yeah I think they’re more understanding because they work with stoke survivors all the time. Yeah.
Saran: So thinking back to when you went back to work.
Shannon: Yeah.
Saran: What would have helped the company to help you?
Shannon: I think more understanding. So I think –
Saran: More understanding of your or –
Shannon: Stroke. So yeah. My two direct line management managers were nurses, but they were out of the clinical field for 10 or 15 years.
Saran: Okay.
Shannon: So the other people in the office were not nursing, not nurses. But I think in hindsight they should have been sent education before I returned to work.
Saran: Yeah.
Shannon: Yeah.
Saran: And so, and there's research being done about this, you know, that should there be some sort of education about stroke.
Shannon: Yeah.
Saran: But you know, should there be like a toolkit, as in this is what a stroke is. These are the deficits that can be experienced and that kind of thing. And do you think, you know, that the training should be kind of compulsory, as in like for an organisation? Perfect world kind of thing?
Shannon: Perfect world, it should have been compulsory, but who's got time?
Saran: Well, and that's it, isn't it. That's it. Yeah.
Shannon: Yeah, yeah. And I don't know whether there was a meeting before with the staff to say about me. I don't know that. But I think there should have been a team meeting with me to say what my deficits are and that sort of thing. And that I get really tired. But that wasn't suggested either. So in a perfect world, yeah.
Saran: And so you said you went through Centrelink for this?
Shannon: Yeah, so, Centrelink. So I had to have a meeting with Centrelink and then my OT at ESD started the process. But the OT at community rehab continued on the process.
So I had to go into Centrelink for about one and a half hour meeting and then they, because I didn't have sick benefits through Centrelink.
Saran: Yeah.
Shannon: So I used up all my sick pay, annual leave pay, and then I had income protection through my super, so I wasn't entitled to sick payment because I was on, I had income protection.
And then they put me in touch with a company and then that took about six weeks. Yeah.
Saran: Do you think someone like you or I would be good to be like a conduit between, say, an organisation and a person returning to work? Did your OT, for example, get any more involved with your organisation, or was it just literally a report?
Shannon: No, it was a report. They filled out the paperwork and then it was up to me. So I got contacted by Centrelink and it was up to me to book the appointments and that sort of thing.
Saran: So you were on your own.
Shannon: On my own, totally.
Saran: Obviously you were quite capable, I'm just sort of thinking about people who, you know. Yeah. Like in some ways, do you think it would have been good if you had someone, even if it was not a stroke survivor.
Shannon: Yeah. Yeah.
Saran: Someone to kind of go, okay, you know, how's it going, Shannon? You know, okay, so what's your feedback? How are you couple of meetings with your management? Do you think that you could have helped?
Shannon: Yes. Yeah. But the company who I went through had an OT as well, so I was looked after by an OT, and a young OT, and she didn't really understand what I was going through.
Saran: So she was involved in disability. So was this like a –
Shannon: Yeah. So she was from the company as an OT. So she was looking after my case –
Saran: The return to work thing. Right.
Shannon: Yeah, my return to work. But she didn't really understand about the fatigue mainly. Yeah, about the fatigue.
Saran: It does, you know, there's so many gaps in the –
Shannon: Yeah.
Saran: Sometimes the lived experience really can help that understanding.
Shannon: Yeah.
Saran: So how did you and so you mentioned in another forum that you went back to your first shift the other week which was about your 12 months since –
Shannon: Yeah, so 12 months. Well, 52 weeks after I had my last shift at the hospital, I returned to the same hospital and to do with nursing shift in ED of all places doing a patient special. And I was glad I left it for 12 months actually.
Saran: Yeah, yeah.
Shannon: Yeah.
Saran: And so it was a so it was a different role, it was nursing?
Shannon: Yeah, a different role. A clinical nursing role. I was in nursing administration at the hospital, but I used to work bank at the hospital and then I went in to allocations. So yeah.
Saran: How did you find that?
Shannon: It was actually really good to be back. The nurses at the hospital are so caring. I'd forgotten how caring they were.
Saran: Yeah.
Shannon: Because of the pandemic and that sort of thing. They’re all stressed. But yeah, I was really glad to be back.
Saran: That's so good.
Shannon: Yeah.
Saran: And you said you're doing that once a fortnight?
Shannon: Yes. Average, once a fortnight. So, yeah.
Saran: And so is that sort of what you're ideally going to stick to or –
Shannon: I think so. I think so. Yeah, yeah.
Saran: And so are you happy that you're out of the nursing and now working at the OT?
Shannon: Yeah. Yeah. Well I did allocations for 22 years.
Saran: Oh wow.
Shannon: And I kept up my nursing registration by working agency work and bank work at the hospital. So, yeah, I was 22 years in allocations is enough, I think? At two agencies and then at the hospital. So. Yeah, yeah. Actually I haven't looked back.
Saran: Yeah.
Shannon: I'm enjoying my role in administration at the OT practice.
Saran: Yeah. If you had advice to give for people who want to return to work, what would you give? What would you say?
Shannon: I think be patient with yourself, first of all. And then, one of my neurologists said, be kind to yourself, you know you have a hole in your brain. So, that's the first of all. And then just talk to your boss or your line manager and say, this is … I didn't talk to anyone at all.
So talk to your boss to say how you’re feeling and how they could help you and what they’re expecting.
Saran: So advocate for yourself?
Shannon: Yeah, advocate for yourself. Yeah.
Saran: And if you could’ve, and whether or not it’s the same, I think it's probably you might be a little bit harder on yourself, but if you were able to give yourself advice at the time, what would you have said to yourself?
Shannon: Slow down. But in saying that, I realise that I cannot, I’m only one person, so I went to work, paced myself. Previous to my stroke, I used to rush. I pace myself. And then I had the pause breaks and that sort of thing.
Saran: Yeah.
Shannon: And then I would finish on time and then I'd go home and forget about work altogether.
Saran: Yeah. Realising your capacity and realising that, you know, it’s not the be and end all.
Shannon: Yeah, exactly.
Saran: Yeah. I think we get so, you know, when I think about pre-stroke, I think, oh my God, what was I thinking? Obviously I wasn’t. It was just going from one thing to the next, and one thing to the next, and keeping on going.
Shannon: Yeah.
Saran: And whereas you do, you have to, well, one, you have to actually stop. But then you're able to like in some ways, when I'm feeling good about things, I kind of think actually it's kind of good because we get our time that we can actually reset.
And we can go, you know, I can choose what I want to do. And, you know, I can bring stuff over from my pre-stroke. I can ditch some of the other stuff.
Shannon: Yeah.
Saran: But it's giving me a do over it. You can kind of be a little bit more selective with.
Shannon: Yeah. I worked all through the pandemic till last June, so eighteen months, in the pandemic and I was, I was really burnt out being in allocations because we didn't have enough nurses.
We had doctors and nurses furloughed because they had covid, or they were close contact of covid. So I was really thankful that I experienced the pandemic and I was able to help find nurses for the wards and that sort of thing.
But I was really thankful to leave that job because it was really stressful. Yeah.
Saran: Yeah. So can you say now that with the work that you do, that you're able to have that work life balance and you're more present at home?
Shannon: Yeah. Yeah, exactly. And I live with my husband and my two children who are 22 and 20 now. And when I have a rough day at work and I still have rough days at work because I'm tired or I've done too much on my days off. They understand that they cook dinner. Stewart cooks dinner or they do a load of washing and that sort of thing.
And then they understand that if I'm tired that I've got to have to lay down or go to bed early or that sort of thing. So yeah.
Saran: Yeah. They’re really understanding.
Shannon: Yeah.
Saran: Is there anything else that you would want to, that you can think of, that you want to say?
Shannon: If you can’t go back to your original role just because, really work, going back to work really improved my speech out of sight and my right hand function. So yeah, if you can’t go back to paid work, just do volunteer work because I think work, for me, I was a fairly active person before my story, so sitting around all day –
Saran: Mental health wise.
Shannon: Yeah, mental health. So yeah, if you can get back to volunteer work or paid work. So yeah, just for a few hours a week.
Saran: Yeah. Yeah.
Shannon: Or a few days a week.
Saran: Yeah, yeah. That kind of thing.
Shannon: Yeah, yeah.
Saran: Was your reading and writing still okay?
Shannon: My reading was okay. I still could read. My writing, well, of course I'm right-handed.
Saran: Oh okay.
Shannon: So I learned to write with my left hand for interviews.
Saran: Yeah.
Shannon: But I was writing with my right hand after 6 months.
Saran: Okay.
Shannon: Yeah. Yeah.
Saran: So you were making yourself –
Shannon: Slowly, but yeah. I’m ambidextrous now.
Saran: That’s cool.
Shannon: I write with either hand.
Saran: You can drink with both hands too.
Shannon: Yeah, exactly. So yeah.
Saran: Ok, cool.
