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In this episode of Wellbeing Interrupted, I have the pleasure of speaking with Clare Reilly, who shares her experiences living with Multiple Sclerosis (MS). Clare talks about the challenges and adjustments she’s made over the years, from her initial diagnosis to her journey of incorporating mobility aids into her daily life. Clare also discusses her passion for outdoor adventures and how she continues to live life fully while managing the effects of MS. 

 

Diagnosed with Multiple Sclerosis: Clare’s Initial Reaction

 

Clare opens up about her MS diagnosis, explaining how she first discovered something was wrong due to back pain that wouldn't go away. After multiple doctor visits and a neurologist's appointment, Clare was diagnosed with MS. She shares how, in the early days, it felt overwhelming to process the news while simultaneously balancing family life and work commitments.

 

The Impact of MS on Daily Life 

 

In the first few years after her diagnosis, Clare found that the physical symptoms of MS slowly started to affect her everyday life. Walking became more challenging, and she had to make adjustments to keep up with her usual activities. Clare reflects on how she navigated those changes and dealt with the frustrations of her physical limitations. 

 

Overcoming Challenges and Frustrations of Living with MS 

 

When asked about the greatest challenges she has faced while living with MS, Clare speaks candidly about the frustrations that come with the condition. One of the toughest aspects for Clare was accepting that she had no control over the progression of her illness. She also describes the mental and emotional toll that MS has taken on her, particularly during times when she wanted to push herself physically but couldn’t. 

 

Using a Wheelchair: Transitioning to Mobility Aids 

 

Clare has now transitioned to using a wheelchair for mobility. She talks about how difficult it was initially to accept the need for mobility aids, but how ultimately, her life has become much easier since embracing them. Clare offers advice to others who might be struggling with the idea of using mobility aids, encouraging them to focus on the newfound freedom these tools can provide rather than seeing them as a setback. 

 

Outdoor Adventures with MS: Revisiting the Overland Track in a Wheelchair 

 

Clare is passionate about outdoor adventures and used to lead hiking trips, including Tasmania’s famous Overland Track. She recently returned to the Overland Track in her wheelchair, and while it was an emotional experience for her, she shares how grateful she was to still be able to connect with the natural world. Clare explains that while her body has changed, her love for the outdoors remains strong. 

 

Adjusting to Camping with MS 

 

Camping has always been a big part of Clare’s life, and she hasn’t let MS take that away. She shares how she’s adjusted to camping with mobility limitations, such as using a wheelchair-friendly setup and modifying equipment. Clare’s story shows that it’s possible to continue enjoying hobbies and activities with the right adaptations. 

 

Clare’s Approach to Wellness: Mind, Body, and Spirit 

 

Clare emphasizes the importance of taking care of her mind, body, and spirit to manage her MS. She shares that she works with a physiotherapist multiple times a week and uses creative hobbies like crafting and building LEGO to keep her mind active and engaged. Clare also talks about the importance of having a strong support network, which includes family, friends, and healthcare professionals. 

Balancing Work, Study, and Life with MS 

Currently, Clare works from home as an administration lead for a non-profit organization and is also pursuing a degree in psychological science. She shares how her experiences with MS inspired her to study counseling, with the goal of helping others who are newly diagnosed with chronic illnesses. 

 

What Clare is Looking Forward to in the Future 

 

Despite the challenges of living with MS, Clare is excited about what the future holds. From upcoming family holidays to finishing her degree, she continues to look ahead with hope and optimism. Clare's story is a reminder that even when living with a health condition, there are always things to look forward to and new experiences to be had. 

 

Connect with Clare Reilly 

You can connect with Clare on Instagram at @clare.reilly, where she shares more about her life with MS, camping adventures and more.

Clare contributed a chapter in the book Whispers of Resilience, by Justine Martin. 

 

Transcript Episode 39 Hurdle2Hope® Stories: Meet Clare Reilly Living With MS  

[00:00:00] Teisha: Hey there, Teisha here, and welcome to Episode 39 of Wellbeing Interrupted, and today we're chatting to Claire Riley. Claire, like myself, lives with MS, Multiple Sclerosis, and Claire actually lives down on the Bellarine Peninsula, where we've moved from, and Um, yeah, I did that interview when I was staying at my parents place a few weeks ago and the Wi Fi was stronger than me talking into my phone. 

[00:00:34] So just as a bio on Clare, Clare was diagnosed with Multiple Sclerosis in April 2017. She has a passion for crafting, enjoying good food and loves spending time outdoors. Claire's dedicated to raising awareness about MS and sharing her journey with others. So in the show notes, and we'll chat about it later, I'll share Claire's Instagram account. 

[00:01:03] She also, as you'll learn, used to host a podcast all about MS. So she's got way more experience in this than I do. I hope you really enjoy another Hurdle2Hope Story where we meet Clare Reilly. 

[00:01:21] Welcome to Wellbeing Interrupted, the podcast dedicated to exploring the transformative power of a healing mindset. I'm Teisha Rose, your host for today. and the founder of Hurdle2Hope. If you're on a quest to not just survive but thrive after a life changing diagnosis, then you're definitely in the right place. 

[00:01:44] Living with MS and now stage 4 breast cancer has taught me a vital lesson. In the face of a life changing illness, our mindset is everything. Each week I'll share insights, tips and strategies to help you build a happier, healthier, More balanced life. So let's begin your journey from hurdle to hope starting right now. 

[00:02:14] Okay. So welcome, Claire. Very excited that you are part of a Wellbeing Interrupted podcast episode. Welcome.  

[00:02:23] Clare: Thank you so much for having me. Gosh, it's been a long time between podcast interviews for me.  

[00:02:28] Teisha: Yeah. So I'm just saying before off air, I'm a little bit nervous because you, um, have hosted way more episodes of a podcast for me. 

[00:02:36] Just quickly. What was the podcast you, um, yeah. So  

[00:02:40] Clare: I did, I think I ended up doing like 80 episodes. It was a lot. Um, it's called MS Understood. You can still access it. So it's still on Spotify and Apple podcasts, but, uh, life. happened and I just ran out of time. Yeah.  

[00:02:55] Teisha: Well, that's all right. You can come on mine as my regular MS care. 

[00:02:59] And what we were saying as well is I haven't interviewed anyone yet with MS. So I think at the moment, MS sort of feels like my forgotten first born. Um, but now that cancer's all in remission and all, I'm really focused on, um, yeah, getting myself better MS wise. And we also share the same physio. So I'm sitting here. 

[00:03:21] Not far from you in my parents place because I had Claire come over yesterday to get my legs sorted.  

[00:03:27] Clare: Yeah,  

[00:03:28] Teisha: yeah, nice. Excellent. So can you briefly just share with us the story of when you were diagnosed with MS and how you initially coped with that news?  

[00:03:40] Clare: Uh, as we all know, uh, ms. Diagnosis story is never that brief, but I'll try and keep it there. 

[00:03:46] um, I had just built a house. Mm-Hmm. Uh, I was the owner builder of the house that we're in now. Um, I had a newborn. Uh, he, when we started building, he was six months old. And, um. Uh, I had, so, you know, that all aside and being kind of on the building site and whatever, I started to get quite a sore lower back. 

[00:04:12] Um, and. Uh, couldn't figure it out. Went to a physio, went to a osteo, went to all these different, um, modalities. And no one could kind of figure out what was going on. And some days I'd be in so much pain, I'd have to call my mum to come and look after our, um, baby. And I'd be lying on the lantern floor. I was in so much pain. 

[00:04:33] Um, and then eventually my dad, who's a theatre nurse or a retired theatre nurse, said to me, you really need to go to your GP. And he Just straight up said you need to go to a neurologist. So, um, yeah, went to a neurologist and then had a bit of a wait between hearing the, you've either got a brain tumour or MS. 

[00:04:56] Waited then for six weeks for the results and found out that I had MS.  

[00:05:01] Teisha: Wow. Yeah. And what, what did you go through emotionally during that time?  

[00:05:07] Clare: Well, it's really tricky because it actually, uh, the timing of that, uh, really linked in with another huge, um, kind of shift in life, which I feel like we might talk about a bit later, but I, we ended up running an outdoor education center for two and a half years after I was diagnosed, so we moved. 

[00:05:31] I was diagnosed in April and we moved and started running the camp in July. Um, so that was 2017. So I was diagnosed, gosh, a long time ago now, um, eight, seven years ago. Um, yeah, so there was a lot. going on. I definitely, because of the move to the job. Um, so it was five hours from my kind of family and home and, uh, definitely stuck my head in the sand for a couple of years. 

[00:06:00] Uh, and then actually use my podcast, the MS Understood podcast to, um, Kind of get my head around it and come through or move with that grieving process. So I used the information that I was getting from all of the guests to really kind of educate myself on what I was going through and how to deal with that and that it was okay to be grieving. 

[00:06:26] Teisha: Yeah.  

[00:06:27] Clare: But definitely had my head in the sand for a long time.  

[00:06:30] Teisha: Yeah, and I think that's common, but I really like that message that it is okay to be grieving because I think, and I talk about having to be authentic to your feelings, and yes, we can have a positive outlook and that's fine and that's helpful, um, in the long term, but if you're feeling scared, overwhelmed, pissed off, whatever it is, you need to feel those emotions. 

[00:06:54] Clare: Yeah, absolutely. We talk a lot in our house about how two things can be true at the same time. So, and I actually wrote a chapter, um, in a published book about that, but, uh, we always talk about how you can be happy and grieving. So it's not happy, but grieving because the but negates the first thing that you've said. 

[00:07:12] It's happy and grieving, or it's excited and scared or excited and nervous. So it's always about how you can feel two emotions or two things at the same time.  

[00:07:24] Teisha: Yeah, that's great. And so what, I always go off on tangents, so that's great.  

[00:07:29] Clare: So  

[00:07:29] Teisha: we can chat. What was the book that was published in?  

[00:07:33] Clare: I've written actually, I have chapters in three published books. 

[00:07:37] Oh, it's going to be big show notes. Um, the one that I'm specifically speaking about with that, um, the two things can be two at the same time is actually, uh, this one, Whispers of Resilience. I'll knock everything off, but it's Whispers of Resilience, and it was published by Justine Clark, who's, um, has MS. 

[00:08:00] She's in Geelong, which is not far from where we are now.  

[00:08:03] Teisha: Yeah,  

[00:08:04] Clare: and yeah, I really wanted to kind of get that message across that. Two things can, yeah, be two at the same time. Yeah, absolutely. And it's a great one. I think the book is particularly good for people who care or support people with MS. So it's getting that, or really learning about what it's like to have MS. 

[00:08:24] Teisha: Yeah, and it's not funny, but I did an episode a couple of episodes ago, and it's talking about how acceptance and hope can co exist. So I think we, um, and yeah, so I think all of those conversations are so important because when you're going through it, and I want to help people who are just diagnosed saying, yes, you can have, you know, different feelings and emotions and you can have, you know, accept what is now, but still have hope for the future. 

[00:08:53] So I love that. So that's really, really good take on it. And so in those early days, so seven years ago, Physically, how did things sort of unravel or was it not noticeable to you at the beginning? Sort of, how was that?  

[00:09:12] Clare: Yeah, so like I said, I had lower back pain. Uh, and once we kind of worked that out, I didn't think much of it. 

[00:09:19] Like I said, I went and ran an outdoor education centre and I was doing upwards of 14, 000 steps a day. Like we had staff, we were working six days a week. We were pretty much on call all the time. And so that was my Focus and my priority, I suppose, um, once we finished up the job there and that was a contract finished, we moved home. 

[00:09:41] It was nothing to do with having an S, but I really noticed in the last six, nine months of being in that job that, um, my walking got harder, things started to hurt more, um, and I couldn't kind of ignore it as much as I maybe had once done. Um, and then once I got home and COVID kind of struck, was right before COVID when we came home, or the lockdown, the pandemic, um, I really noticed that having, I don't know whether it's like you, you use it or lose it kind of situation, or it was just the way that my MS Um, but yeah, I, um, started using walking sticks and then I started using a walking frame and now at home, I use a walking frame, um, and then when we go out, I use a wheelchair. 

[00:10:35] So, it's really, um, the first couple of years didn't notice a huge amount of physical difference. Um, and the last few years have noticed quite a quick, I suppose, but we just, you can't compare, I don't know what is quick and what is slow really.  

[00:10:53] Teisha: Yeah, yeah, that's right. Every, everyone is different. And I think, you know, sometimes that's good, you know, for us because yeah, we're not watching someone thinking, oh, that's gonna happen to me, or, you know, vice versa. 

[00:11:07] Um, but. Yeah, there's a lot there though, if it is happening quickly in terms of was, you know, what were your biggest challenges during that time or what were your biggest frustrations?  

[00:11:19] Clare: Um, well, I think everything is a frustration. I mean, I don't attend or try not to dwell on the frustrations. Um, and you know, that can be harder some days than others, but I think That, yeah, every time walking got harder, I was walking less distance on my own. 

[00:11:45] You know, I felt frustrated by that. And I think I felt frustrated at myself for not being able to, you know, not trying hard enough or not being able to, but I really had to get my mind around the fact that I really got no control over what the MS does to my body.  

[00:12:04] Teisha: I like that and highlighting that as well, because I think you're right. 

[00:12:09] In 2000, I was in hospital for months and months, wouldn't wrinkle my toes. I tried, tried really hard and it was so frustrating. So that disconnect between mind and body that we experience with MS is really hard. So, and did you find that at times? Like, do you naturally go to do something and think, oh, can't, you know, and sometimes I'll get up or sometimes I'll take a few steps and I forget my walking stick and I thought, well, that's a good sign. 

[00:12:39] I've forgotten I've got MS, but then I'm sort of stuck in the middle of the room thinking, where is it? Yeah,  

[00:12:44] Clare: it's funny. Um, Sometimes I'll do that or go to, I don't get much, much of a step now without my walking frame, but, um, it's also funny because I dream, in my dreams, I'm running or walking or whatever, so it's still, you know, if I'm sitting here at my desk, like I have been today, all day working, I'll forget, not forget, but like, the body and how my body works now, I suppose, isn't necessarily the body that's in my subconscious, I 

[00:13:16] Teisha: Yeah. Yeah, that's right. And it is, it's, and sometimes those dreams are nice to have in a certificate. Yeah. And I actually, when I was in hospital once, I kept going to someone for guided meditation and it was bringing me guided that I was free of my body and all. And I think, no. Even though I felt, I didn't feel as trapped in my body when I had that visualisation. 

[00:13:41] So I found it mentally, for my mental health, that was good. And you talk about their mobility, because I think it's great having this discussion for people really struggling with using a walking stick or walking, um, Walker. I'm thinking, what do I call mine? I call it the White Walker or Andrew calls it the Night Walker, you know, on Game of Thrones. 

[00:14:06] So, you know, I use that. And now for you, wheelchair. And I think, and I've spoken about this before, this whole narrative about sometimes we feel like somehow we've lost the battle with MS because we need a walking stick or, and it's just so. wrong for that to be pushed because I think, well, no, we're now embracing life, doing things differently so we can still get out there. 

[00:14:32] So yeah. So how's that process been for you?  

[00:14:35] Clare: I definitely think the, the shift from able bodied to walking stick or walking frame was harder than the shift from walking frame to wheelchair.  

[00:14:48] Teisha: Okay.  

[00:14:49] Clare: And I totally feel, um, Getting a wheelchair or starting using a wheelchair is really difficult, but what I'm finding now that I use a wheelchair is that every time something makes my life easier, I just think about how much easier my life is, not about how much harder it is. 

[00:15:09] Does that make sense? So I think at the start, it felt like my life is so much harder, and this is so much effort. And now when I get into a wheelchair, and I go down the ramp that my husband's built, Off our deck and I go down the street to pick my son up from school, I realized that that is so much easier than the fight trying to not use a walking stick or a walking frame. 

[00:15:33] Teisha: That's great.  

[00:15:34] Clare: That's really good. I know it's really hard to understand, but, but I find it, yeah.  

[00:15:39] Teisha: Yeah, and even with the walker for those, for me, I didn't want one, you know, and I thought it was ridiculous. I was watching other people walk around our 100 acres and I'm sitting there and I'm thinking, what am I doing? 

[00:15:52] Um, so I got a walker and then, um, I use a, a different walker for going. Out and about and I can do, you know, to shopping and everything and it's great. And I said to our physio, Claire, I said, you find me a really nice looking one, I'll use it. Yeah. So, you know, next session she had the catalog and we got this really nice looking one. 

[00:16:12] Yeah. And it's great and I wouldn't be without it. And I think how ridiculous, not for me not to have done that earlier. Mm-Hmm. Yeah. Yeah, so I do. I think it's really important and I also think often with conditions like MS, you know, and for me it was back in 97 when I was diagnosed and the, um, literature given and all, it was like this worst case scenario of sitting in a wheelchair and I think That's ridiculous. 

[00:16:41] You know, it's being miserable in a wheelchair as opposed to actually the wheelchair. It's being miserable out of a wheelchair. Yeah, that's true.  

[00:16:50] Clare: Without like, and some days even, like some days I think, because I use a walking frame inside at home, I use my wheelchair if we go out. I don't use a wheelchair at home. 

[00:17:02] Um, And some days I will spend all day walking around with my walking frame and then I sit on my wheelchair to go and pick up my son from school or go down the street for something and I think, oh my god, this is so easy. I'm doing this all the time. Um, yeah, so it's almost a relief sometimes for me to get into my chair versus, you know, That's right. 

[00:17:25] Trying to battle. Yeah.  

[00:17:28] Teisha: That's really good. And I think for anyone listening, that's a really powerful message, um, to, to share. And I'll put in as well, Claire's got a great Instagram account. And I know I saw you with the reel about doing, now doing things like washing, that you can go down the ramp. 

[00:17:46] Excellent. Yeah. So, no, it's all good. Opens up all new things that you can now do. So, that's great. Um, and the other thing, and I think what I'm talking about your Instagram account, and we'll chat about how people can connect with that after. But I also saw a couple of posts which I really connected with, and I wouldn't have 12 months ago, but now we're living on 100 acres. 

[00:18:13] I definitely do. Um, and you were talking about the Overland track in Tasmania, how it was a 6 day hike. You used to lead, but then you were on a sort of track or yeah, explain that you're on a track in your wheelchair. And I was like, wow, she's out there doing it. So yeah, what was that about?  

[00:18:33] Clare: So like I said earlier, we ran an outdoor center for a few years, not too long ago, but my Qualifications is actually, I have a Bachelor of Arts in Outdoor Education, so my, I qualified in Outdoor Ed, which is a very bizarre thing to say, but after I finished that degree, I went and worked as a guide on the Overland Track, um, There's a particular, I suppose, company or organization called Cradle Huts where people can go and pay quite a lot of money to have, uh, you know, three course dinners and wine every night and stay in nice huts and have showers and, um, that kind of thing. 

[00:19:12] So, I led a few of those, um, but I'd also done the hike a number of times with my parents and. Um, with my husband now. He wasn't my husband at the time, I don't think. And yeah, we were down in Tassie, uh, in winter this year and, uh, went to check out Crater Mountain. Obviously you're in Tasmania, what else? 

[00:19:32] And the first, uh, maybe three or four hundred meters of the hike is just on a boardwalk without stairs. And so I went and did that. And honestly, it was quite emotional because It's tricky because I'm probably in that stage of my life where I wouldn't necessarily want to go and hike it again. But again, that not being able to do the whole six day hike, um, you know, something to get your head around. 

[00:19:59] So it's that thing of like, I was excited to be there, I was grieving for the inability to be able to do it. So I was excited to have been able to go on it. You know, it was raining that day. We have a 10 year old, like, isn't it? We're not doing that hike anytime soon. It was all of those kinds of emotions at the same time of. 

[00:20:19] Teisha: You  

[00:20:21] Clare: know, the loss of not being able to do that, but being there, and I hadn't been to Tasmania since 2012. So, you know, quite, quite a way before me being diagnosed. So, yeah. Um, yeah, I mean, it's beautiful. I highly recommend it. Um, it's good access for like to the start of that. There's good access around the start of, um, Lake St. 

[00:20:48] Clair, if you're using a wheelchair and you want to go and check those places out, it's gorgeous. Um, but yeah, definitely mixed emotions for me. on that, that day. Yeah.  

[00:21:00] Teisha: Yeah, absolutely. And how was your son? Were you telling him that this was what you used to do? He would have been blown away. Yeah. I mean, he's 10. 

[00:21:08] He  

[00:21:09] Clare: doesn't care that much, but he'd heard all the stories and there was a wombat. So we looked at the wombats and, um, it was very cold and quite rainy. So. So again, he just was like, cool, let's go, whatever.  

[00:21:23] Teisha: Tell me in the car.  

[00:21:24] Clare: Yeah. Or just like, we're done. We've talked about that. Cool. Let's move on. Yeah.  

[00:21:29] Teisha: No, that's great. 

[00:21:30] And so you getting sort of. back into sort of camp. I think I saw another post that you were going camping and that's something you used to do. So tell me about that. Yeah,  

[00:21:40] Clare: I suppose we've never really stopped camping. Uh, it's just different. We use a wheelchair whilst camping.  

[00:21:46] Teisha: Yeah.  

[00:21:47] Clare: We have a camper trailer. 

[00:21:48] We've actually just bought a brand new ute, uh, which has some modifications in it, which I haven't actually even shared about on Instagram yet. Um, we're very lucky to find and are modified. Uh, Fall Drive. So we've got a crane and a tourney seat in the front seat. Uh, so yeah, we'll be definitely heading out for more trips, but we've never really stopped. 

[00:22:12] Um, I met my husband rock climbing. Um, we took our son camping for the first time at six weeks old. We took him hiking not long after that. So it's just, like I said, my background's outdoor and it's something that I've always. Always done. It's just different to be able to share that, I suppose, on Instagram, going in a wheelchair and, and sharing the kind of approachability of those, you know, people not feeling that they've lost that. 

[00:22:42] Teisha: Yeah. And how do you find it, like, in terms of having to make adaptions and all? I mean, I, Yeah, it's interesting. I'll learn from you.  

[00:22:54] Clare: Well, I suppose we don't make that many adaptions. Yeah. Um, my wheelchair is great. Uh, I don't know if anyone has a look at my Instagram, you'll be able to see it's, it's not like off road, off road, but it's a pretty decent, gets me around. 

[00:23:09] Um, we, Don't go to places that have stairs or a beach because they're not really accessible. Obviously, definitely not, but I can't go along a beach. It's not really somewhere that I can access. Um, yeah, what else? Uh, we have a camp trailer, not like a fancy one that you have to step up into, but like an old school canvas one. 

[00:23:34] So it's right on the ground. I just have to step up into bed. Uh, not ideal to go camping when it's raining, because wheelchairs in the rain, not great, but like, no one wants to go camping in the rain anyway. That's true, that's true. Um, so yeah, I don't think we have done that many, we haven't changed much. 

[00:23:54] Teisha: No, that's great, and I think it's the relaxed attitude with it, like we're, uh, Well, I guess I am camping in a caravan, which is our, you know, house at the moment. And yeah, it's, um, having my walker is actually really good. I was saying to you, you know, sharing too much information, but you have to go to the toilet a lot with MS and I've always got my walker where I can squat wherever I want. 

[00:24:20] Um, so, you know, it's, um, Yeah, and it is very freeing. And I, I didn't grow up camping, um, at all. And I love that freeing experience of being outdoors and looking at the stars at night. And I just love it. Like, I love it. And I just think when you are going through something like MS, or whatever your condition is, um, It is, that connection, you know, with land is amazing. 

[00:24:50] Yeah, yeah, definitely. So it's, um, it's good. Um, and in terms of then, it takes a lot to stay well, physically, emotionally, you know, um, wellness. Yeah, people have all different approaches. So what's your approach to staying well? What does that look like?  

[00:25:12] Clare: Um. I suppose there's a couple of ways or like elements to this. 

[00:25:18] I see a physical therapist four times a week, um, which is a lot, but, uh, you know, maintaining strength and, and ability, not mobility, but ability is Um, definitely something that I'm, well, it's important when you've got MS to be able to maintain that strength. So I see, um, physical therapists four times a week. 

[00:25:44] Uh, I have a support worker, which I'm super grateful for, um, as well as a cleaner. So I suppose like looking out for that kind of side of my life is it takes a lot of that kind of responsibility off me. I'm also very grateful to work from home so I can fit a lot of those appointments either Before work, so after my son goes to school and before work in that half an hour, I do a lot of those appointments. 

[00:26:09] And then I'm at my desk by a minute past 9, because I do it in the same room. So that's really good. Um, I also have a great support system. So my parents live not far away. Friends, um, my husband works away for half the week in Melbourne. Um, so friends who will drop Ellie at home if it's raining and I can't get down the street because I don't drive. 

[00:26:32] Yeah. So in terms of all that kind of stuff, I've got a really good support system, uh, very full diary. Um, but all of those supports are really important. I also, uh, like, supposed to keep my mind healthy. Um, Love crafts and like, I suppose they're called cozy hobbies. So like, not like a big hobby, but just like a little hobby, like building Lego or coloring in or crafting, all that kind of stuff, um, is kind of how I feel my, personal time, and, oh, I play Animal Crossing on my Nintendo, which is very not outdoor, I know, but 

[00:27:17] yeah, so I, I just really like to focus on things that don't have anything to do with anything, really.  

[00:27:25] Teisha: Yeah, that's good. And that just clears your mind, I guess.  

[00:27:30] Clare: Yeah, yeah,  

[00:27:31] Teisha: definitely. No, that's great. And what about other people? Like, I've got One friend who has MS and that's all, like I haven't, you know, necessarily always gone to different support groups and all. 

[00:27:43] So do you have been part of support groups or how's that worked for you?  

[00:27:48] Clare: Yeah. Um, well I did the podcast for many years, so there was a lot of connection and, um, kind of understanding and, and growth through that time. I also went to a local school. Support group in Geelong and then I was the manager or whatever, the host of that facilitator, I suppose, um, for a while. 

[00:28:11] But I think I've got to a point now and I think those things are super important and super beneficial when you kind of initially get diagnosed or you need, or something changes, like it's really good to have those supports in place. Um, and I still like have those connections kind of by Instagram and, um, could reach out and have a chat with anyone. 

[00:28:35] But I suppose part of it for me also was, you know, I'm kind of 70s in, a lot has happened quite quickly initially and then kind of slowed down. Um, my days are really full and also I want to make connections with kind of our local community. And from what I know, I'm the only wheelchair user in town, really. 

[00:28:59] Really? Well, I mean, maybe obvious, you know, it's maybe obvious wheelchair user down the street, that kind of thing. So I try and maintain a lot of connections with friends in town and. They don't necessarily have the understanding or experience of living with a disability or MS, but I also think that everyone's got some level of something that they're all dealing with. 

[00:29:23] So yeah, I'm not, um, I don't feel alone necessarily.  

[00:29:29] Teisha: No, I agree with that 100%, you know, and I think what MS gives us, like, lots of people reacted saying it's so unfair, you've got, you know, cancer on top of MS, but MS has become like my silver lining with that, because we do learn and grow so much getting through MS, especially if we create a life that we're enjoying living in, that you can apply that to anything else that happens in your life as well. 

[00:29:58] Yeah, and within the local community then, in terms of, um, yeah, access, I guess, you know, does, do you find that really difficult? And I guess, what can we do? Talk about to get other people to realise that some shops or some places like you can't get in. I know there's one on the Ballerine that I love, you know, their food and all, but I struggle unless I get a park really close and my walking's okay and I can get up with my walking stick the stairs. 

[00:30:32] I'm super curious  

[00:30:32] Clare: where that is, but you'll have to tell me after.  

[00:30:34] Teisha: Yeah, yeah.  

[00:30:36] Clare: No, definitely. And Port Arlington's pretty old and on a big hill. Um, that's where we live. So, uh, I'm really glad for the wheelchair that I have. It's, like I said, pretty off road. We don't have full parts. So I'm going across the grass or even down the road a lot of time, a lot of the time. 

[00:30:56] I just support the, financially support the places that I can access. So if you want money from all of the people, you should put a ramp in because people with disabilities also have money. It's like, I can't go to certain places to have coffee, and so I don't go to certain places to have coffee. Yeah. Um, you know, there's a couple, there's a great local place that, um, you know, I just wave to them and I come in through the, I wave to them at the front and I go in through the back door. 

[00:31:32] Um, and they, that's fine. Um, they do have an accessible toilet inside. They just don't have a ramp at the front. Okay. 10 centimeters, you know, um, yeah, so, yeah, I think it's, it is an interesting thing. And I think a lot of my friends have, you know, when you know, someone in a wheelchair, you think about what it's like to try and get in places with a wheelchair. 

[00:31:57] Whereas, If you don't need to have that awareness, you don't need to have that awareness. I think it's a tricky balance. Yeah.  

[00:32:05] Teisha: Yeah. And I think too, you know, advocating isn't being confrontational, you know, it's just saying, Hey, have you thought about this? You know, I, I didn't realize, but now that I'm Not walking great for me. 

[00:32:18] Um, that little step or those three steps are really hard if I'm not, you know, having a good day or I need my walker.  

[00:32:25] Clare: Well, and you don't have to lift your walker up, which is awkward. Yeah,  

[00:32:29] Teisha: I know. I'm always, I'm doing that a lot. And then people, it's really interesting. You can tell the friendliness of a place when I approach a door and all the doors you have to push in. 

[00:32:41] So you're trying with your walker and then pushing in your door and it's all very tricky. But different people I know where I've moved to jump out of their chairs and restaurants and quickly open the door or open the door to let me out. And then I was in South Melbourne the other night and going into a pub and it was like, Nothing. 

[00:33:00] No one even noticed. And I was like, yeah, so I think if nothing else, you know, if someone's listening and you see someone struggling, just open the door. I don't mind. I'm not pressured. And it's  

[00:33:11] Clare: true. When you're with your walking frame, sometimes Like if you have to pull the door towards you and then you have to walk backwards. 

[00:33:20] Yeah. Like that's really tricky.  

[00:33:22] Teisha: Yeah. Yeah. No, it is. It is. It's all, but I don't want it to stop me from going out. So you're right. It's about finding the places that are good and easy and accessible and then going those and giving those places our money. So that's good. And then you mentioned about your sort of career and life balance. 

[00:33:40] So your career is obviously. changed a lot, um, since you went to uni, um, and got your outdoor ed, um, degree. So what does work look like and how has that been, you know, having to make those changes?  

[00:33:57] Clare: Yeah, I think, uh, the changes were fine. It was definitely at an age or time in my life where going on outdoor ed trips was not really what I was after. 

[00:34:06] And when we moved to the outdoor ed Camp, most of my job was the administration of running the camp anyway, um, it was obviously being there was part of the part of the kind of running programs and that sort of thing, but mostly my job at that time for those couple of years was communicating with schools and organizing the calendar and all that kind of thing, which is what I do now. 

[00:34:33] Um, So, I'm an administration lead for a not for profit and work from home 9am to 3pm, five days a week. So, um, it feels like it was kind of a natural progression. I'm also studying. I'm doing a degree of, um, a Bachelor of Psychological Science. So, one day, I hope to be able to work in counseling, uh, with people who are newly diagnosed with chronic illness, because I had some terrible experiences when I was first diagnosed. 

[00:35:04] So that, um, the job that I'm doing right now, uh, lends itself well to me fitting in my studying. It also is in within school hours, so someone's got to be home. to pick up our son from school and my husband works away. So I think it was a pretty natural progression. Um, yeah, I'm just really grateful for having stumbled across this job when I really needed it. 

[00:35:29] So,  

[00:35:29] Teisha: yeah. And then they're lucky to have you too. I think sometimes, you know, when we do have an illness, And sometimes, you know, we're still qualified, my legs mightn't work great to get to certain places or whatever, but my brain's the same and, um, you know, so I think that's good. And it's really interesting, I didn't realise about that, you know, studying, because my change was from business and I thought my career would be corporate to then studying social work. 

[00:35:55] And I think sometimes that when you do have these experiences, it opens your eyes, um, All different things. Um, yeah, so that's really interesting. Um, and I think that's great you're doing that because you bring to it so much.  

[00:36:10] Clare: Well, I think having a counsellor or psychologist, whichever you end up with, with lived experience is really, really important. 

[00:36:16] Yeah,  

[00:36:19] Teisha: and especially if it's lived experience with an outlook like yours, because lived experience with a miserable counsellor might turn, you know, turn not so good, but in terms of what you've still been able to do, because we, Can't then underestimate how much that takes mentally to be shifting all the time and doing new things and it is difficult and some people, I think it's either part of your personality or not, you know, before and after you're diagnosed. 

[00:36:50] So yeah, you've done incredible.  

[00:36:52] Clare: Well, thank you. I'm only like four years off any clients. So if anyone's thinking about it, let me know in about four years.  

[00:37:01] Teisha: My podcast will be still running, so I'll have you back on and we can do some things together. Because another component of what I'm doing is working with practitioners, because I think it's really important to have patient client experience within practice of allied health services. 

[00:37:19] Um, so yeah, so I think what you're thinking and what. is aligned with what I'm thinking as well. Um, which, you know, they all want to learn as well. And I know we've both got an amazing physio who's very open to our insights. So yeah, which is, which is good. So as you look ahead, what makes you excited? You know, what are you looking forward to? 

[00:37:40] Clare: Ah, well, we've got some holidays planned. Um, Finishing my degree is something I'm looking forward to, but I just think also the little things like my son, I can hear him and he's got home from school about half an hour ago and I'm excited to go and, you know, see how his day was. Um, we've got. Uh, lots of cool things. 

[00:38:01] I try and like, you know, I'm, I'm a real, um, work to live kind of person. So, um, we've got some fun things coming up on the weekends and yeah, just the little things. I think it's trying to, you know, Have a fulfilling life and not just focus it around MS and work.  

[00:38:26] Teisha: Perfect. Perfect. And, you know, with your modified 4WD, there's lots happening. 

[00:38:33] That's great. That's really exciting. Well, you'll have to share it. So I don't have breaking exclusive news on my podcast when it comes out.  

[00:38:41] Clare: We'll put up, we'll put something up  

[00:38:43] Teisha: when it's registered. Yeah, we won't mention it until. No, excellent. So whereabouts can people connect with you, Claire?  

[00:38:52] Clare: Yeah. So the best, uh, spot I suppose for me is Instagram. 

[00:38:57] So it's just Claire, C L A R E dot Riley, R E I L L Y, and I'm actually, don't know if I should say this out loud, but have been considering starting the Substack newsletter, which is just the idea of sharing sort of just what we've been talking about, you know, the combination of hobbies and life and living with MS and, um, You know, pros and cons and all those kinds of things. 

[00:39:23] So hopefully we'll release something on that and maybe people can connect.  

[00:39:29] Teisha: Yeah. Yeah, for sure. We can always update the show notes and I'll share it on the Instagram because that's great. And that's what we want to do. You know, MS is always going to be there, but we don't have to have it dominate every thought all the time. 

[00:39:44] And there's still so many things to celebrate that we still can do. So I love your approach. I think it's helped so many people get out of that headspace, um, and really think that, yeah, there's some cool things ahead and things to look forward to. So thank you very much for joining me today. Um, Um, and yeah, enjoy your new four wheel driving adventures. 

[00:40:09] Thank you so much for having me. No worries. Thanks, Clare. 

[00:40:17] Thanks so much for listening. Really hope you enjoyed that chat with Clare. Clare mentioned her Instagram account at Clare. I'll put the links in the show notes, also the link to the book where Clare wrote a chapter for. I'm really enjoying these Hurdle2Hope stories, so I really hope you are as well. I learn so much from the guests and it really just helps to broaden our approach to our illnesses. 

[00:40:51] and Health Challenges. If you're listening to this podcast on Apple or Spotify, if you could leave a review, a five star review would be great. Um, that would really help in getting other people onto Wellbeing Interrupted to share their story and insights. Um, actually, Heading off tomorrow down to a radio interview with Leanne. 

[00:41:21] If you haven't listened to Leanne's episode it was on a Hurdle2Hope story, num, uh, episode 26, and Leanne lives with limb girdle muscular dystrophy and she has a, amazing um, radio show on Pulse FM in Geelong and we're chatting about all things relating to Hope. So I'll share the details of that on my Instagram page so at Hurdle2Hope with the number two. 

[00:41:54] Follow Instagram because that's where I share. Lots of behind the scenes, um, like doing an interview with Leanne, so I better prepare for that. Um, and yeah, hopefully you have a great week and we'll chat soon.