Balancing Big Goals and Chronic Illness
Show Notes
EPISODE SPONSOR: Moore Australia
Being diagnosed with a chronic illness is a massive change. And most people who have experienced this, speak about a grieving process for your old life and even your old identity, especially if it was based on being physically active.
But our two guests insist a medical condition is not the end of your life. In fact, they say their illnesses have forced them to be innovative, creative and push for change - resulting in opportunities that never would have opened up for them otherwise.
This episode is not just for people who are dealing with health conditions - it’s for their friends, family and colleagues (so everyone really). We can all learn how to be more inclusive and supportive of people who can’t do the same things we can.
Hear from:
Chrissy Symeonakis - who founded PR firm, Creative Little Soul in 2013, not long after being diagnosed with multiple sclerosis. Chrissy grew up in Renmark, SA and has many rural clients. She has designed a workplace that not only helps her to balance her health needs, but also provides the same flexibility to her employees (many of whom also have an illness or are busy rural Mums).
Kelly Barnes - a mental health and wellbeing advocate based in Dunkeld, VIC. Kelly was diagnosed with fibromyalgia in 2015. She was named the Victorian Rural Women’s Award Victorian Winner in 2020 for developing workshops using working dogs to help spark conversations about mental health. She says her own experience with chronic disease was the catalyst to realising the significant role dogs can play in a person’s wellbeing.
Thank you to our episode sponsor: Moore Australia
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Links:
https://www.chrissysymeonakis.com/
https://www.instagram.com/creativelsoul/
https://www.facebook.com/matesdogschool/
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S6 Ep4 Balancing Big Goals and Chronic Illness
Chrissy Symeonakis: 0:06
I've gotten okay with saying no to things, like not feeling that pressure to always say yes, like I've actually got a tattoo on my wrist that says nope, like to remind me no, say no to people.
Kelly Barnes: 0:17
I can try and make some positive of it. Or I can sit in the life's not fair box and like, absolutely I sit there quite a lot sometimes and get really cranky and then I'll pull myself positive of it. Or I can sit in the life's not fair box and like, absolutely I sit there quite a lot sometimes and get really cranky and then I'll pull myself out of it.
Kirsten: 0:30
Hello and welcome to Ducks in the Pond by the Rural Podcasting Co. I'm Kirsten Dipperose, and alongside me today is Jen McCutcheon. Hello, thanks for having me. This episode is sponsored by accountancy firm Moore Australia, and you'll hear more about them, no pun intended, at the end of this episode. Now, those of us living in regional and rural Australia, we know how hard it can be to access healthcare and services. But imagine navigating those complexities on a more frequent basis.
Jen: 1:04
Yeah, it's an environment that presents unique challenges for people living with chronic conditions, mainly those created by limited healthcare services and the physical and emotional isolation that comes with it.
Kirsten: 1:16
But the two guests you'll hear from today are proving that you can still achieve big things while managing chronic illnesses, and they're also advocating for more support for people living outside of metropolitan areas, both in different ways. Jen, you spoke with Kelly Barnes, who uses working dogs to foster social connection and support mental wellbeing in farming communities, and she was also the 2020 Victorian AgriFutures Rural Woman of the Year.
Jen: 1:43
Yes, in our chat we discuss her love of dogs. You'll hear from them too, the success of her workshops, her journey with fibromyalgia and how she nurtures her mental and physical health. And, Kirsten, you spoke with , a PR guru, entrepreneur and chronic illness advocate.
Kirsten: 2:01
Yes, she is an absolute powerhouse and has a signature get shit done attitude and she's really an inspiration to everyone. She meets and has built a business around being supportive of people with illnesses or people with families just often women who need that flexibility. Let's meet Chrissy.
Chrissy Symeonakis: 2:24
I live in the thick of it now in Sydney, in the city, just a stone's throw away from King's Cross, which everyone will know from Underbelly and all the TV shows. I've lived here for 10 years now. I'm originally from South Australia, so the polar opposite of a big city. I come from a really little country town and a place on the Murray River called Renmark. I grew up there with migrant grandparents and parents Grew up on a farm, so on a fruit salad farm, they call it. So we had fruit all year round, so we'd have vines like this time of year, winter, then we'd have stone fruit into the summer and then they'd have like hover crops in that mid part of the year which were generally pumpkins. So I joke around a little bit that I'm a pumpkin heiress because like I love pumpkins and every time I go home there's like hundreds of pumpkins and stuff. But yeah, as a kid I grew up really regional, quite three hours from Adelaide and now from the Mildura border of Victoria.
Kirsten: 3:19
So smack bang in the middle there you're an honorary rural woman, then you're technically in Sydney, smack bang in the middle there. You're an honorary rural woman, then You're technically in Sydney, but from the country and a fruit salad farm. I love that. That's a great way of describing it. Do you get a whole heap of pumpkins every time you go up there? Because my mother-in-law grows pumpkins. It's not a farm, she just has a really great veggie patch and then I feel almost overwhelmed by having to do something with the pumpkins. And they sit there and I look at them going. I've got to do something with that pumpkin. And it's funny you say that because I love pumpkins.
Chrissy Symeonakis: 3:51
I've have since I was a small child and when I moved to the city like I would just have zero awareness of what a pumpkin costs in a shop and I go to the market, I'm like what $13 for a pumpkin? I was like shocked. But every time I do market I'm like what $13 for a pumpkin? I was like shocked. But every time I do go home I'm very insistent that every meal has a pumpkin in it. Do you get home much?
Chrissy Symeonakis: 4:11
I probably spend on average about nine to 10 weeks a year back in South Australia, which is a quarter of the year almost. I have a lot of clients there so I work with a lot of rural women, a lot of rural businesses. I think the benefit for them is that I understand the rural dynamic, I understand the community, the tourism factor, but then they're also getting city kind of marketing and business at that high tier level, but without having to pay for it either, because I do look after them in price. And what's your business about? It's pretty broad. So I started my business, which is called Creative Little Soul 10 years ago this month. I have worked in the marketing, hospitality and entertainment industry for about 30 years I was doing media and press releases when you still had to fax them to people, before there was Facebook and you could put an event up. Like it was very much old school journalism, pr and events management.
Chrissy Symeonakis: 5:09
I was diagnosed with multiple sclerosis 10 years ago, so I was working really high flying kind of job, working for some like really big names. And yeah, just woke up one morning, wanted had a shower, realised my vision was like a bit of a snowstorm, had to go to the hospital, thought I was having a stroke and then it turned out I have MS. And then, yeah, just decided that I needed to put some boundaries in place and some rules in place to protect myself, because I'm one of these go-getters, people pleaser, wants to make everyone happy before myself, which is a toxic, strange and a trauma response. And I just had to say one of my doctors just basically said to me if you don't manage your stress and change the way in which you're doing things, you're going to fast track yourself to a wheelchair. And I was like I don't want that as my life, I don't want to do that. So, yeah, just quit my job and started my own business.
Kirsten: 6:05
So you were 30, just 30 when you were diagnosed with MS.
Chrissy Symeonakis: 6:10
Yeah, so they actually reckon a lot of women are diagnosed between 30 and 40. Predominantly, a lot of women over men will represent with MS. They don't know why. I see a really good neurologist who is a professor of neurology and to be part of his clinic you have to actually partake in any like clinical trials, whether they're exercise medication or providing data. So I'll often get surveys where I guess they're trying to find similarities or links to geography or trauma or a virus or an illness. So just yeah, still not quite sure where it's coming from. Some people it's hereditary, other people it's not. So in my family there's nobody else that has this.
Chrissy Symeonakis: 6:51
I don't have any vision in my right eye at all. So the optic nerves I imagine it's like a phone cord and it's got like that casing around the nerves. The MS just went in and saw that as an invader and started attacking it. So the coding from the outside of the nerve is gone, which is why I don't have that vision. I also have right side disability. So from my hip to my knee is numb completely. I've got a small patch where I can feel on my shin and then my foot is numb and fluctuates between, like pins and needles, pain and complete numbness, so I have to use a walking stick. And then I'm really affected by the heat. So because I have nerve damage in certain parts of my body, in my brain and my spine and wherever else, I can't regulate the heat. So whenever it's really warm, like, I just get really frustrated. I really can't think well, I have brain fog. I pretty much have to live inside during the summer, like I'm very much hiding in the air con.
Chrissy Symeonakis: 7:53
I was working for a company that was very male dominated. I was the only female department head in what was like a bit of an old school boys club and when I needed to take time off, so like when I was diagnosed, I only really took two weeks off. And when I needed to take time off, so like when I was diagnosed, I only really took two weeks off and then went back to workforce pregnant process, was still not quite understanding the disease and how that would represent or show its face to me. And I just remember going back to work and I had an appointment and I was like, hey, I'm just gonna start later. And I was working 80 hours a week, like Like I was giving my all, making these guys like a ton of money and then just something along the lines of you have to take that from your annual leave. And I was like I don't think you understand, like I'm giving you all these hours already I'm literally going to be gone.
Chrissy Symeonakis: 8:38
Or there was the comment of we'll make it on your own time. And I'm like like how can I make it on my own time when I'm giving you all of my time? And I think for me that was like the very first kind of thing that really got into my head and irritated me. And then I then there's just these small things along the way and then it was that doctor saying if you don't make these changes, you're gonna fast track. And I said you know what, screw these guys. I probably was always gonna work for myself, but I think this gave me that push and a pretty big kick up the bum to just go. You know what, just now's the time to do it Like go.
Kirsten: 9:10
Sorry you had that experience. I think things are a bit better in general today. I hope so, with awareness about if you have a chronic illness or if something unfortunate happens in your life, which it can happen to any of us at any time that, yeah, having time off is part of it. That's part of the full-time benefit.
Chrissy Symeonakis: 9:33
I do hire people with chronic illness. I hire a lot of mums who don't want to go back to full-time workforce. The dynamic and the culture that I've created in our organisation and our business is all the things that I hated that I had from bosses that I'd worked for in the past and I was like, cool, we all work remote. Because why would I want to work remote from home? Because some days, if I'm not feeling great, I'm going to go have a snooze for a couple of hours and then come back later. Or maybe I can't sleep because I'm up with pain, so I can just log in and do some work while I'm feeling productive or I'm utilizing these hours.
Chrissy Symeonakis: 10:06
But, like all of my staff, do you need a mental health day? You just say the word and you've got it. Do you want to go and have a holiday and work while you're away in Bali? Cool, I love that for you. Some mornings mums have swimming lessons and they talk to us in the car. We don't start between before 10 am because I don't want to. It just allows you to create a really nice working environment for both myself and for others, because who wants to drive an hour and a half to sit in their office. I don't want to do that. Why should I make my staff do that? And I've got staff all over.
Kirsten: 10:39
Australia. That's awesome, You're unstoppable. But it's interesting like just pushing back on that, this culture of having to be in the office and be seen to be working. How do you manage the work hours? Or this is you as a boss. How do you manage, like, the work getting done when you have employees with chronic illness or rural women or just mums?
Chrissy Symeonakis: 11:04
I suppose the way that I look at it is that I'm grateful to have my team show up every day, that they want to work alongside of me. So like I don't look at it as you're an employee and you owe me your life or nothing like that. So for me it's just hey, I'm doing this and I'm working for these clients. If you want to come and hang out and work with me on stuff as well, that's great. I very much will leave their availability to them, as opposed to me saying I need everyone on Monday to Friday to this. No, that doesn't work.
Chrissy Symeonakis: 11:34
I've got students that work for me. They have certain days of the week that they work throughout the year, but then when school holidays comes, they increase it. When they increase their hours, that's when the mums will take a break because the kids are on school holidays. So it works out really well. Mum goes and hangs out with the kids, the students pop in. The great thing about the mums is they're up really early and they're up really late.
Chrissy Symeonakis: 11:56
So in the morning what will often happen is when I finish up and I'm like a bit of a, like I work into the evening as well, Like I have a bit of a break at around four o'clock chill out, lay down for a while, recharge, and then I'll come back online around 8, 9pm and I can leave notes in our workflow system for the early birds. So by the time I've come on and they're at swimming lessons or during a school drop off, I already know what's going on or they've done something for me to look at school drop off, I already know what's going on, or they've done something for me to look at.
Kirsten: 12:30
That's awesome. The concept of the working week emerged, you know, after the industrial revolution, where the working class had certain hours and then they made it because people were expected to work all the time. They enforced it. Back in the day, it was mainly men working and you had to physically be there. It's completely different now. The idea that we're still holding on to this Monday to Friday, nine to five thing is ridiculous, so long as we all are respectful and not working 24-7, which can be the flip side of it, which you never want that. But yeah, I think it's really interesting how you come from the point of not, you work for me and therefore you'll do the hours that I say it's you work for me and I'll construct the business so that I can balance everyone's needs. So tell me about how you manage things personally, because having MS means that you can't do some things some of the times, like, how do you manage your life and your business?
Chrissy Symeonakis: 13:27
good question. I find I don't have kids and that's a personal choice. So I feel like there are a lot of people that go to me oh my god, how do you get stuff done all the time? A lot of it is. I don't have children and I can see my mum, friends are working and then trying to do career and their families and all of that and whatever. So I think for that's a big like tick, because then I'd have other time that I might not necessarily have if I was looking after tiny humans. I love tiny humans, just not my own. I'm the cool auntie, I'm the cool friend, and that's where it ends For me.
Chrissy Symeonakis: 14:01
Every day is different. I don't know how I'm going to wake up. Like last night I was in a lot of pain and it took me a really long time to go to bed. So I woke up this morning, did my team briefing and went back to sleep for two hours. Now I feel a million bucks Some days. I might just feel fantastic all the time.
Chrissy Symeonakis: 14:18
I find we know that MS is really triggered by stress, so stress is like a really big agitator to it. I might have plans. I might've made plans like six months ago to go somewhere. And then you know what, like long weekends are usually a big one for me, because what happened is I've got so many clients that I need to prepare for a long weekend. A lot of them work in the hospitality sector, so there's like additional things that need to happen before we can take a couple of days off. I don't actually take the public holidays off. I'll actually monitor everything and like just check things in real time, because I don't want to come back on a Monday and there'll be all these huge problems where I could have intercepted them and solved them whilst they're happening. But my staff will take the days off.
Chrissy Symeonakis: 15:04
I think for me, as time has evolved, I've gotten okay with saying no to things, like not feeling that pressure to always say yes, like I've actually got a tattoo on my wrist that says nope, like to remind me no, say no to people. Somebody would say, hey, I need this, and for me, like I took that as I need that right now. So I'd put like going out to dinner with my family or doing something with my husband, like I would put it all on hold and prioritize this client work, because in the beginning, when you're first starting out and building up a client base. You need to do those things right, like you need to eat, so you have to take the money when you can take the money. But I was then sacrificing myself.
Chrissy Symeonakis: 15:45
As I've gotten older now I have less problems saying, yep, there's going to be a three-day turnaround on that, or, mate, you're coming to us on a Thursday before a long weekend, you're not going to see that till next week. So I suppose I'm more comfortable with myself now. I think the clients that I first started taking to the clients that I take now that personality and that person has changed drastically. I've got some really high set standards now of what is an ideal client and what's a client I won't even talk or look at and you couldn't pay me all the money in the world If there's red flags like I'm not going there.
Kirsten: 16:22
I love it. Boundaries Going back to, yeah, how you can manage your life. So one of the ways sounds like selecting good people to work with. What about saying no to some of that, to the social stuff?
Chrissy Symeonakis: 16:35
Because that's hard, yeah. So the social stuff is tough. I actually lost friends because of it and I don't even think now. I don't even feel like they're my friends, I feel like they're acquaintances. And I worked in a really cool nightclub. I worked for some awesome music festivals, so people were always wanting tickets or you were popular because you were always in this really cool space.
Chrissy Symeonakis: 16:55
And when I got diagnosed I'm immune, suppressed as well. So what that means is if I get sick or if I get an infection, like it can escalate, like I've had UTIs that have put me in the hospital and I needed to go on intravenous antibiotics my body just doesn't get it. Like something creeps in the back door and then it escalates and then I'm in hospital. You know, like I didn't go to my brother's wedding because he was having a 300 person wedding and I was super immune, suppressed on the medication that I was on at the time and my doctor just said to me I can't have you be at risk in a room with so many people, like it's inevitable you're going to get sick and I can't say what that will do to you. I don't want to risk your health and so to tell my own little brother like I can't come, to risk your health. And so to tell my own little brother like I can't come to your wedding broke my heart. Like I felt like shit and I cried the whole day. But he got it. Like he's, like you know, that's okay. His wife not so much, cause I had duties and she didn't really get it. She does now Like I've had friends that invite you and then you go, hey, look, I can't come.
Chrissy Symeonakis: 18:02
Or look, maybe closer to the date, and my rule is always say, if there's like a food and beverage component, say if I'm invited to a wedding, I'll just say, look, if I'm gonna come, I'll probably just come to the church because I don't want to risk. You then have to pay for me for a meal that I can't come for. Or hey, it's probably going to be hot in January, I'll probably sit your wedding out, but maybe I can take you and your husband out for dinner on another time. So I look for alternatives and solutions but like you stop getting invited to things. But like my really good friends will be like, hey, here's the invitation If you want to come. If you can't come, that's totally fine, we can catch up at another time, or they make concessions for me and be like like a friend of mine will go to a bar or something and she's, hey, so this is the club that we're going to. It's within five kilometers of your house. There's stairs but I've already checked that there's an accessible access for you. There's an air con and I'm like legend. So my really good friends will then start to go. These are the criteria of us wanting to keep you included and be inclusive for your disability. Yeah, they're the best. They're the best people like they.
Chrissy Symeonakis: 19:11
I don't have to ask, I don't have to feel uncomfortable, I don't have to feel unwanted, whereas sometimes, like at the beginning, yeah, you just stop getting asked because it was too hard for that person which, whatever, they're not my friends, and I find this really common with people with the chronic illness that I speak to. It's that you actually go through a period of mourning for your old life. You literally grieve like somebody's died, like when I got told my vision wasn't coming back, like I went into a really deep depression. I didn't want to go out. I didn't want to go out anymore. I didn't want to talk to people Like I became really.
Chrissy Symeonakis: 19:43
I like was like socially excluding myself, which was not good, and I got psychological help for that and counselling, which I think is necessary. But it's one of the big things, like you just feel really isolated and isolate even more. And in hindsight now, like I look back at the last decade and I'm like all right, there was some pretty crappy things that happened. But look at all this awesome stuff that's happened now. That probably wouldn't have happened if I wasn't forced to make this change because of health.
Kirsten: 20:12
Did you find that you might've been socially excluding yourself as well because you didn't want to be a burden? You know I know some people think, oh, I don't want to be a burden. You know I know some people think, oh, I don't want to have to be there and say, oh, we need the air con on or I need to.
Chrissy Symeonakis: 20:26
I can't go too far, I would have conversations in my head before my friends would have them. I was just like, oh, it's too hot, I don't want to be like bothering. Or there's a lot of walking, they're going to a hen's party, they're going to do a bath. Hop around. I could probably only go to two of those. But then as I got older and as I got a lot more comfortable, I'd just say what's the first venue you're going to or what's the last venue you're going to, and I can still participate.
Chrissy Symeonakis: 20:52
But I'll just meet you, you know, at a different part of the journey and sometimes I'll just be like I know if I'm going to go out and I'm going to be out all night, it's going to wipe me out. I'm going to feel terrible for a few days. I've got work to do. Can I really warrant going out and having one bender and a night out? That's going to then make me feel terrible for a week. They call it the spoon theory with chronic illness. Like, you get x amount of spoons per day and having a shower might be one spoon, cleaning the house is three. So it just makes you become really super aware of how much energy or effort you have and you allocate those to things that I suppose matter more for you.
Kirsten: 21:30
Wow, that's a really good way of looking at it, and I think people who don't have a chronic illness but know someone who does can probably sit there and go, oh okay, so that's what it's like. What would be some advice to someone who, yeah, has a good friend or a loved one with a chronic illness in how you can best support them. And I'm thinking of one of my best friends who has Crohn's disease and, yeah, she'll have a flare up and that's it. She's missed a couple of my sort of big birthdays because of that, but I get it and she'll be on the phone almost in tears going. I'm so sorry and I'm like I know you can't make it because it's just happened, don't worry, would love you there, but don't worry.
Kirsten: 22:10
Yeah.
Chrissy Symeonakis: 22:11
I think just that, like understanding and not making them feel bad about it, because they're already like, they're already feeling 100 times worse than any feeling you could say. And I think sometimes the things that I've learned is particularly around wedding. It might be all about the bridezilla and it might be all about, oh, we ruined my day or this. No, we haven't ruined your day. You're not even going to realize that one less person's there. But I feel like it's just be really careful with your words and the way in which you say things, because this person's already feeling terrible. I think the nicest thing you can do is just say you know what? That's totally fine, let's just catch up the two of us when you're feeling better. That's the nicest thing anyone can ever say, and then it's okay, cool, and it's you decide. You tell me when you're up for catching up. That's the best.
Kirsten: 22:57
You have a husband, you mentioned.
Chrissy Symeonakis: 23:01
Yeah, when I got diagnosed and they said MS, I was like no way, man, this can't be happening. So he's the kindest, most patient, loving person. We didn't know this until we'd been married for about five or six years. About my MS. He's from the US, so his parents live in America. We met when I was working over there. I brought him back.
Chrissy Symeonakis: 23:22
My husband's mother actually has multiple sclerosis. His mum has had MS for about 30-40 years now and when I was diagnosed like his mum's in a wheelchair and so she has some permanent disability and immediately my thoughts were like oh no, I'm gonna end up and be in a wheelchair. That's all gonna happen really suddenly and I'll need carers. But the difference was that obviously when Linda was diagnosed, there wasn't really much information or medication as options where they know now specific for MS, like early intervention and starting medication straight away is like a really good way to prevent disease progression Whereas she had been on the same medication, which is one of the really old ones, for 30 years. Now I've changed six medications in 10 years just to make sure I get the one that's right for me. So he's awesome.
Chrissy Symeonakis: 24:13
He's a chef, so he does the cooking, he does the laundry. I buy the washing powder, I get a cleaner that comes in, because I felt there are a lot of things that I can't do in the home. If I was to clean the house it'd take me a couple of hours, but the fallout from that would be a couple days. And I had a mentor say to me Chrissy, outsource the things you can't do yourself. If you can make more per hour than the cleaner, play the cleaner.
Chrissy Symeonakis: 24:38
So for now I look at my whole life of what can I outsource. So my groceries, I get a home delivery. I spend less money. They come to my house when I need it. I don't have to go waste time at the shops. I do all my shopping online. I have a cleaner that comes. I just try and outsource all the things that I can and then I can have quality time with my husband. And then there isn't this imbalance of him doing more and being resentful, because I never wanted that to be a problem, because I see it happen in a lot of MS groups I'm part of. You're tired, so you can't hang out the washing, but then your partner has worked all day and all week as well, and then he's picking up the work at home. It, yeah, it definitely works for us that we've got this little groove, that we balance things out yeah, that's good yeah, supportive husbands.
Kirsten: 25:30
Look to end. If you could give a piece of advice to yourself when you were first diagnosed with ms and in terms of yeah, what would it be for managing it and still achieving the things you want?
Chrissy Symeonakis: 25:42
to achieve. I think the big thing is that a medical diagnosis isn't like the end of your life. Yes, it's tough. In that moment I feel like you need to grieve. I feel like you need to grieve the person that you were and go go. Well, I had a pretty good 30 years and I had a great time. But now this is a new chapter and it's not necessarily bad. There are loads of things that I've done that are way better now that I probably wouldn't have done.
Chrissy Symeonakis: 26:14
I think be kind to yourself. Like you're gonna be your worst enemy. You're gonna feel like you're going to be your worst enemy. You're going to feel like you're letting people down. You're going to feel like that you're missing out opportunities. Like I think you just need to reframe the way that you think about things and in your life. I look at things in decades now, like that was the last one. This decade for me now is wealth right, I'm in my forties, before I get to 50 and 60, like I'm not working past 50. I'm going to make all that money now that I can invest it and then I can enjoy the rest of my life then, and there, yeah, don't be afraid. And, who knows, like my health is really good right now. Yes, I have some terrible days, but for the most part like it's pretty bloody good. My neurologist is happy. I feel great most of the time. So I want to work and do as much as possible and help as many other people as possible I still can, because I don't know what the future holds.
Kirsten: 27:09
Jen, doesn't she just have such a great outlook on life. I definitely need to follow her lead and start learning how to say no more. I say yes, but it's because I want to do so many things, but time and you know, even my health like I get run down. I don't have a chronic illness, but you know you can only do so much.
Jen: 27:32
You can, and I loved her attitude as well. Not sure I'd go as far as getting a tattoo saying nope on my wrist, but I am definitely guilty of being a people pleaser and recently, since having kids, I have learned that it's okay to slow down and take on less.
Kirsten: 27:47
Now Jen, like Chrissy, Kelly Barnes, is who we're hearing from next, and she's been dealing with a chronic illness for nearly a decade now.
Jen: 27:55
Yes, she's now a rural mental wellbeing and disability advocate working in the mental health research space after needing to give up physical labour on farm due to developing fibromyalgia. Let's meet Kelly.
Kelly Barnes: 28:09
So I grew up in South of England and I grew up on a farm. My dad's a contractor, so a lot of hay silage cropping, contracting. So I grew up there and I always loved my animals. So I studied animal science at uni and then I came backpacking to firstly to New Zealand in 2007, I think, and then worked for a dairy farm and worked in the shearing sheds there and then came to Australia for I think, about three weeks originally and then loved it and then I've been here permanently since about 2010.
Jen: 28:45
And tell us about where you live and your farm and your life in rural Victoria.
Kelly Barnes: 28:51
So I am based in Dunkeld and I call myself a townie now because I live in the large town of Dunkeld. I have a friend that manages a large property just towards Hamilton here, so that's quite good because I can go and have a play when I feel like it. I always say I'm a fair weather farmer now because when the sun's shining or it's nice I'll go and play, but otherwise, if it's raining, I'll stay inside. So yeah, got the best of both worlds, I think. But yeah, I just live here in Dunfield and then work as a research assistant, mostly in mental health and wellbeing.
Jen: 29:27
Obviously you do a lot of work in the mental health space, and is that how you got into your dog training, or tell us how that came about.
Kelly Barnes: 29:38
No kind of the reverse. I think probably my interest came about from my own personal experiences in that space and then working in rural merchandise as well and seeing the challenges not just for the farmers but also for the people working with farmers as well. So as a reseller working in that space, seeing lots of people struggling and I think, yeah, just not necessarily the farmers themselves but also the people that then work with them.
Jen: 30:03
Can you share your journey with us and in your chronic illness and and that story?
Kelly Barnes: 30:09
Yes, I guess probably the piece for me back in 2016. So 2014-2015 I obviously studied animal science at uni and then I traveled and worked and I was quite happy working on farm. So when I left uni I worked on farm on a sheep property in England, traveled here, worked in the shearing sheds, did a lot of contract work so drenching, landmarking that kind of stuff and then I was getting a bit of back pain and thinking, oh, you know, that's just getting a little bit older, like I'll try and do something to use my brain a little bit more and use my studies. And so I went to work in rural merchandise and then I actually through that transition, through being more sedentary, obviously having a lot of stress, I think at the time, taking on a new job, being in a completely, completely different environment, I had more pain than I had when I was physically like in the sheds and things like that, and I was exhausted. So every weekend I would literally sleep for about three hours middle of the day just conk out. And I went to the doctor and I remember asking my friend. I was like, oh, I was living with my good friend at the time and I said, oh, do you just hurt, do you ache? Or she's like no. And I was like, if you press your leg, does it hurt? And she's like no. It was a lot of these little things that I thought were normal, like I'd just gotten used to them. I said my back's a bit sore, and both of us would go to the chiro or the physio and whatever. And then I was getting this real fatigue and I can't remember how it came about with the diagnosis, but just a couple of times of this real exhaustion, fatigue and yeah, they do a trigger point thing. And she said, oh, I think you've got fibromyalgia and I'd never heard of it. So I got diagnosed in March 2016.
Kelly Barnes: 31:53
I think it's a really weird one. No one really knows what it is. There's no definitive test, so it's like a process of elimination. You haven't got these other things, so this is probably what it is. There's no definitive test, so it's like a process of elimination. You haven't got these other things, so this is probably what it is. There's also not necessarily a clear treatment path, so there's lots of different things you can try. It's really varied too, so what works for one won't necessarily work for another. There's a lot of patterns in that chronic illness kind of process. But I did the classic try and ignore it and just carry on regardless and okay, that's what it is. But yeah, okay, now I know that'll be great, I'll just carry on and try and ignore it. That obviously doesn't work. You can take the Panadol, the Panadine 4, ibuprofen, things like that, but I didn't find them. They'd work really short term but not long term. And then there's lots of other weird and wonderful symptoms which I think every day I discover something new.
Kelly Barnes: 32:47
It's really, it's really complex. It's really there's a lot of things that you don't realize are connected to it. So originally they used to think it was like a muscle pain, but it's basically like an overstimulation of your nervous system. So my central nervous system responds to everything really amplified so sense like really strong smells, really loud noises, bright lights, certain foods. It doesn't like the classic gluten, sugar, which I love, alcohol so I don't really drink anymore, so it's probably the easiest thing for me to cut out so any kind of activity like any pain response. So if I get hit or touched or something that for a normal person would be like a quick response and then go away. So me that becomes like a whole overdrive, systemic response, but it's probably the easiest way to describe it. So there's lots of other things like the weather, so the weather will change, my body will respond to that high pressure, low pressure, all sorts of things like that.
Kelly Barnes: 33:49
So it's probably been I don't know nearly 10 years. Yeah, nine and a half years of learning new things every day. I think with it and then obviously as well trying to pick out what is that and what is something else, because everything then gets lumped in the fibro file as well. It's a very I guess it's a very messy illness, and it's not. It doesn't fit in a nice little box for people, either for medical people or for us when you're trying to understand it. But it's basically for me. My biggest things are a lot of pain, brain fog, fatigue.
Kelly Barnes: 34:22
I can imagine being in a rural area was it hard to get taken seriously and then actually have services and facilities to try to help you navigate your condition, yeah, and I think reading other people's journeys so like I joined a lot of online forums and things which have been really good, so reading other people's journeys into getting diagnosed, I think mine was quite good. I think I was genuinely just lucky that I had the GP that I was seeing here, was aware of it and was very quick to diagnose in that sense. But since then, probably the hardest thing, it's invisible, so it doesn't have any neat kind of diagnostic criteria. It doesn't fit in anything. A lot of the symptoms are invisible.
Kelly Barnes: 35:09
So for anyone, and so for me, having that sense of identity really based around physical work, which a lot of people work in ag or in rural areas like you are very active, you're very outdoors, you're quite like physical in your work and things like that, that's probably one of the things I found the hardest. My whole sense of identity was based around physical or had grown to base it around my physical capacity to do things and I love doing that stuff as well. And then you are surrounded by that kind of work and that kind of industry and that kind of industry and that's yeah, that's something I found really hard. And then things like specialists we at the very beginning. We were really lucky.
Kelly Barnes: 35:48
Here in hamilton there was actually a rheumatologist who was working as the gp's clinic, but he retired, I think, a year after I got diagnosed, and so it's the Ballarat, which is an hour and a half from me, geelong, which is probably over two hours, or Melbourne to see any of those specialists. So, yeah, it can become quite expensive. And living in rural areas, you've got the travel, you've got the accommodation, everything else on top of it. So it is, yeah, it's definitely quite challenging and I think a lot of the I was very lucky, but a lot of the health professionals perhaps aren't as aware of some of these things as in one of the cities.
Jen: 36:30
And I can imagine the mental toll is a lot too.
Kelly Barnes: 36:33
Yeah, and I was just thinking about this, how do you explain that? But you've got I guess there's this whole grieving process of losing the person you were before. So you're still there, but you've lost your everything. You've relied on that sense of identity, being physically able to do things, and then you've got this whole kind of you've lost your capability like capacity, I guess, for me even a brain fog, sometimes like my speech. So I find that's really frustrating. Really It'll get me every now and then I can't think of words and people often can't think of them, but you just literally get this complete blank.
Kelly Barnes: 37:09
So there's lots of kind of pieces around how you operate day to day and then you've got to redefine your whole value proposition and it takes a little while to learn your capacity. They've got what this is called a boom and bust cycle. So when you feel really good, get really excited, go and do all the things you used to be able to do, and then you crash and you have a big flare up, put yourself in a big kind of bust and then you'll feel a little bit better. You'll start doing more and to start with, you go through just constantly these boom and bust crash cycles until you learn to pull back a little bit on the overexcitement, then scale back. But that's really frustrating and sometimes I'll do it now I'm like I know the consequences are going to be this for three days, but I really want to go and do this and you have to weigh up. So you end up constantly planning and weighing up all of the options. You've got all this complexity around working all these things out and then you're working through this kind of shame and stigma and things, because so for me I look fine, so visibly like I don't. I had a broken leg and I was on crutches. People would absolutely hold the door open or anything like that, but it's not visible, any of it. It's also so fluctuating. So one day I will be fine and one day I will be out doing all this stuff at the social event, but then the next three days I'll be on the couch and literally resting and that's the bit people don't see. That's where they might see you out and they see you doing all these things, and then you then say you can't do something or oh, you were fine yesterday. Like you're out doing this stuff. So there's a lot of kind of working out what your capacity is and working that out amongst all of the other moving parts, like the weather or something else. And if you go somewhere and someone's got really strong perfume, you may have been feeling great and that knocks you for six. So there's, yeah, trying to manage all those things and then manage what your actual capacity is like.
Kelly Barnes: 39:09
What can you still do? I always think it's a decision like it's one that I get really cranky with all the time. But you have to make a bit of a choice of I can try and make some positive of it, or I can sit in the life's not fair box and like, absolutely I sit there quite a lot sometimes and get really cranky and then I'll pull myself out of it. But you've got to make a choice of yeah, I'd say I didn't ask for this or something I did. No one can even explain how you get it sometimes Like for me, a lot of the time it will be from a traumatic event like a car crash or a death in the family or something like that. Mine isn't, so it's a bit more kind of whimsical and very for want of a better term, but for me the only way to work through it was like there has to be some kind of reason, or there's some purpose, or I still have to find a purpose and work through it that way, but it is really tangent.
Jen: 40:05
Yeah, have you found your purpose and going forward? Have you been able to flip the script?
Kelly Barnes: 40:14
Oh, I think I'm always finding a new purpose every day. To be honest, I don't feel like I'm doing anything at all some days and you do like you go 10 steps forward and and slide back. But yeah, I guess the the rural women's award process probably the process itself was huge for me. So it really it gave me a chance to tell my story and I always say this the biggest thing to ever come out of it aside from all the other fun stuff and dog stuff is just really being seen and feeling heard. So we obviously had articles and publicity and I had a lot of my ag clients and people that I hadn't really shared that side with so much and they'd hear on ABC country hour and they'd all have these conversations with me and it was really nice because it just made you like it took this whole weight off and people would have conversations about mental health or they'd have conversations about chronic pain or whatever.
Kelly Barnes: 41:08
And then I guess the dog side of things came very much from my journey with fatigue and when I moved off farm so I had this old dog who had been. I got him when I was backpacking here. So everyone should have a dog when you're backpacking. It's very practical, very handy. I sort of had him for a few years and then he had an injury or two, so he had a bit of chronic pain and was a bit hobbly and then he loved snuggling and so when I got really fatigued and whatever, I'd spend a lot of time on the couch. At the start and he was just always there. So really I learned to use him as that support and it really highlighted to me where my supports were, because it can be really isolating. Like you do drop off a lot of your social activities, you do end up spending a lot of time on Facebook or social media or Googling stuff because you physically can't really do too much but your brain's really active so you still want to go and do all these things. So, yeah, I found this whole piece around dogs and how much they support people.
Kelly Barnes: 42:13
Obviously, working with farmer mental health this was pre-COVID when I pitched the idea using working dogs to open up the conversation about mental health. But it was really about getting people off the farm and getting them to socially connect and running this workshop and the dog school for that project was the hook to get people up. But when the story got announced and my project was talked about in the media. Probably the biggest lesson I learned was that people just love talking about dogs and you could literally talk about anything if you had the dog there or if you start a conversation with dogs and they would happily talk about mental health, all sorts of stuff. Like people would be really comfortable and start opening up when you talk about your dog and it's like a really nice intro. Or you'd both be there messing about with the dog and acting it and people would start talking about all sorts of stuff. So I guess the kind of school piece which I ran, my pilot program, was really good, really successful, but that became one piece of a puzzle.
Kelly Barnes: 43:17
And then there's so much more behind that whole. Just dogs. Basically, literally I could just talk about dogs all day and and people do love talking about them. So I've recently been trying to do my therapy dog training course. So I do workshops talking about mental health for work and I think having therapy dogs is awesome.
Kelly Barnes: 43:39
Having dogs that farmers can relate to would be really good. So I've got currently that's asked to sleep now, but we're ripsling in the background. One of mine is a friend's dog who's had a fit replacement. My old dog has sadly passed away but I do have a little necklace of them in and I've got another yellow kelpie that I think she's a bit neurodiverse, she's just a little bit different, different, and it's taught me this whole other lesson again. So I think finding purpose in just exploring all the lessons that I've learned from my dogs at the moment and making that into kind of ways for other people to feel comfortable, I guess having conversations and opening up really challenging conversations through that and that's something I've found through sharing my journey is that people have said, oh, you're really easy to talk to. I never thought of it as a skill before, I just thought I'd love talking, but I guess, yeah, people felt comfortable and then I really loved hearing their stories and sharing stories and empowering them to open up and have conversations whenever they're comfortable. So that kind of empowerment piece and that's what I really like. I think there is still a fit for doing some of the kind of structured working dog schools that I ran, but also exploring all the different aspects of where you can use them and how you can use them in therapy settings and other bits and pieces.
Kelly Barnes: 45:05
And even for people with chronic illness. Loneliness is probably one of the biggest challenges for a lot of them and I think we saw that through COVID particularly like lots of people got pets during COVID and they're such a really powerful support thing for people that perhaps lose their social networks and things like that. Yeah, there's lots of lots of ways to find purpose. There's still lots of times where I get really cranky too and life is really hard and really and it's quite funny. But my friend recently went overseas for a week or two and went to see taylor swift actually swiftie and it probably cost her the same amount as I'd spent in the last three months on medical bills. But yeah, I think it's moments like those where you do really have to look at yourself and go like, yeah, that's the reality, kind of raising a bit of light around it, making people with chronic illness not feel so ashamed and not feel so hidden, but also empowering them.
Kelly Barnes: 46:04
Because one of the things I've learned and especially recently so probably the last six months I had quite a challenging time with my health it's the skills that you have. Like you develop this massive set of skills because you have no choice. I think I just rang nearly every medical professional in Victoria at one point and you have to keep advocating for yourself because no one else, like no one else, will do it for you. You have to keep pushing, you have to be innovative and looking for different things. Like I work in research, I'm then researching stuff about what could be going on and you're then taking that suggestion to doctors and things like that, because they don't really know. So you develop this whole suite of skills, unfortunately, but fortunately.
Kelly Barnes: 46:49
So I think it's things like that. That also you know, with farming. There's all these different challenges that are out of your control, and it fits really well with chronic illness. But you learn so many skills and I think it may be hard for people to see how they could employ someone, or it may be a bit confronting to start with thinking about employing someone because it can be really variable, but the skills that they bring are enormous. And then you know creativity, like let your grit and determination to get through something, innovative ways of doing things, perseverance, all of those skills.
Kelly Barnes: 47:24
So what's next for you where I think one of doing things, perseverance, all of those skills. So what's next for you? I think, one of the things I'd love to do next, and I did say I'd probably do a cheeky plug. I'd love to do a bit more storytelling and maybe podcast or something around that chronic illness and bringing visibility to it. So talking to people in rural areas with chronic illness and really on that kind of positive side of it as well, like unpacking the challenges so that other people can see as well.
Kelly Barnes: 47:51
People don't know what it's like and I've got that real nice contrast of I was really young and fit and capable physically and now I have the pain and I know I can really compare. So I think, yeah, doing something around storytelling and helping other people feel empowered and feeling like they can do more and not feel caged in, I guess, with a diagnosis or not feel like they can't do things just because they have chronic illness. I think there's so many things they can do. Yeah, something around that. And I'm also doing my wellness coaching, training online. Yeah, hopefully coaching people in that space as well that they can thrive with chronic illness. So trying to flip the lens a bit for people and encourage them to do things they want to do and dream big and do the things that you might do it a different way, or you might get there a different way or you might take three times longer to get that, but that's okay and that's it for ducks on the pond.
Kirsten: 48:53
Absolutely powerful words from Kelly to finish on and I definitely support you starting your own podcast. I actually kind of know someone who can probably help make that happen.
Jen: 49:10
Hands up, Hands up, it's me 100%. Both those interviews really epitomise that rural can-do attitude. Don't you think Rural communities are so well-versed in overcoming adversity? And Kelly and Chrissy are both doing just that? Absolutely.
Kirsten: 49:19
So a big thank you to Kelly Barnes and Chrissy Symeonakis for joining us. Make sure you check out Chrissy's business as well Creative Little Soul. If you need any help with email marketing, pr, she is just all over that sort of stuff. And, of course, thank you, Jen, for joining me. My pleasure. Now let's meet our fabulous episode sponsor, Diane Ketchell, from Moore, Australia. It's an accountancy firm which does a lot of work with agriculture, farming, agribusiness and lots of other businesses that are rurally based, and she gives us some really cool business advice as well. Here's Diane.
Dianne: 49:59
I was actually born on a small farm that was a dairy farm to begin with and then moved into a bit of beef cattle, so I am not a townie per se, and at Moore I do have a large clientele of agricultural-based clients. So in our Tasmanian office, which is where I'm based, we have around 80% of our clients who are primary producers and we have a strong emphasis on family businesses. So, whilst we can also engage with corporate investors and all the governance aspects that come with that, we are very heavily primary production based and look, some of the industries that we work with include dairy farms, beef and sheep farms, mixed crop farms, vineyards, horticulture farms, mixed crop farms, vineyards, horticulture, aquaculture and agritourism, and this expertise in agribusiness will also assist in our and any other industry. It's just giving us a depth of knowledge and allows us to provide a well-rounded and effective service across the board. Can you tell us about what More Australia does and your role there?
Dianne: 51:00
So, more Australia is a network of independent firms who provide accounting, tax, audit and business advisory services, and my role is the business advisory manager in our Launceston office and I work directly with family businesses, many of which are in agriculture or agriculture related services. I pride myself on our client first philosophy, with the aim to ensure that we fully understand our clients' operations and requirements, and by combining this personalized approach with the global expertise of the Moore Network and that's a network that spans 600 offices in nearly 120 countries we provide comprehensive quality support, both locally and internationally. Lovely yeah, quite locally. And internationally. Lovely yeah, quite a lot of different industries.
Kirsten: 51:47
I know what about the sort of services? What do you do for some of those industries?
Dianne: 51:51
Yeah, okay. So specifically, what we do in the Launceston office is the preparation of annual financial statements and tax returns. We help with tax planning and minimisation, strategic planning, succession planning and bookkeeping, just to name a few, and we also provide advice on organisational structures and strategic agronomy. And then, because we are part of this larger, more network, we have extensive access to expertise that enables us to provide further comprehensive and tailored solutions.
Kirsten: 52:26
So as someone who has been working with businesses for probably your whole career, is that right have?
Dianne: 52:32
you always done this, so I have. I began my career as a bright-eyed 18-year-old in public practice and I was there for 13 years until I started having my family, and then I've been in small business. My husband and I have a small business which is not in agriculture. I've worked in a lot of different industries and three years ago I came back full circle to my public practice roots and I'm loving it. Yeah, it's been very valuable, and I think you'll answer this next really well, which is what's your favorite piece of business?
Dianne: 53:06
advice. Yeah, this is probably something I've learned over the last few years, especially coming back into what I do, and it's about really identifying what a business is driving towards and especially a family-based business, understanding their strategy and getting that, because you need to understand your goals to get your strategies right. So, basically, every decision that you're making should bring you closer to achieving the goals of your business, and that's what we're here for to help you, guide and steer you in the right direction. And look, it doesn't really matter if you don't yet have a clear destination. Any path will do.
Dianne: 53:44
We know paths take us in different places. So just really get out there back yourself, have self-belief and motivation. They're so important to running your own business and, basically, if you want it, just go for it. And another probably really important piece of advice is to find a mentor who has done it before, and there's so many opportunities out there, and especially in agribusiness. Probably really important piece of advice is to find a mentor who has done it before, and there's so many opportunities out there, and especially in agribusiness. There's so much information sharing and people want to support each other.
Kirsten: 54:14
And that's just absolutely brilliant, great advice, thank you. So where can people go to find out more about More Australia?
Dianne: 54:20
and what you guys do. We have our website, which is moore-australia. com. au, and in Launceston you can find us at 161 St John Street and look. Of course, referrals play a huge role in our business, so asking your network for recommendations can be a great way to learn about us. We do have clients all throughout Victoria and Tasmania in our network and, because we're a large network, most states would know who more were. That's where you can find us. Great Thank you. Thank you, Diane, and thank you to Moore Australia for sponsoring this episode. Our absolute pleasure.
