Day by Day: A Family's Journey Through CRPS with Carla Yeo

In this heartfelt and powerful episode, Nichi welcomes a very special guest, Carla Yeo, a devoted mother of three, a talented photographer, and an advocate for her daughter, Georgia, who has been diagnosed with Complex Regional Pain Syndrome (CRPS). Carla shares her family’s journey through the challenges of living with an invisible condition, emphasising the importance of hope, acceptance, and finding personalised care that truly listens to the patient.

Key Takeaways:

1. The Importance of Listening:
   • Carla stresses the significance of healthcare professionals truly listening to patients and their families, as each individual’s experience with an invisible condition is unique. This deep listening can lead to better, more tailored care and support.
2. Acceptance and Adaptation:
   • Acceptance of the diagnosis was a turning point for Carla’s family. It allowed them to focus on what they could control and to filter out unhelpful advice, leading to a more personalised approach for care.
3. Hope and Gratitude:
   • Holding on to hope is crucial. Despite the challenges, Carla emphasises celebrating small victories and maintaining a perspective of gratitude, even for the simplest things that are often taken for granted.
4. The Dangers of Expectations:
   • Overloading someone with expectations and goals can be detrimental, particularly in cases of chronic pain. Carla highlights the importance of meeting the person where they are and avoiding pressure that could exacerbate their condition.
5. Finding Joy and Routine:
   • Despite the challenges, Carla and her family have found joy in small, consistent routines like daily walks and coffee together. These rituals provide much-needed connection and normalcy in their lives.
6. The Role of Lived Experience:
   • Carla’s experience underscores the value of learning from those who are living with invisible conditions. This lived wisdom is essential for professionals seeking to offer compassionate and effective care.

Quotes:

• "Every zebra has different stripes, just like every person with these conditions, their presentation is different, so there's no one size fits all approach."
• "Forward is forward at any pace."

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Intro and Outro music: Inspirational Acoustic - Organic Harmony by Sonican.

Disclaimer: This content is general in nature and intended for educational purposes only. It is not deemed as psychological treatment and does not replace the advice from your health professional or need for psychological treatment.

Transcript

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Welcome to the Sustainable Success Series, the podcast where my mission is to transform the worlds of those living with invisible conditions, supporting them to become their biggest advocates, begin to heal and make sustainable changes to get back being too busy living. We explore sustainable success in health relationships and business. We raise awareness and we share humble and relatable stories from people just like you. Driven visionary people who dream of more for their life without sacrificing their health. I've been through the trenches myself through trauma, adversity and invisible conditions. Plus the insights, knowledge and know how from those in the field. I'm your host, Nikki Murren. I've been through the trenches myself through trauma, adversity and invisible conditions. I've combined my lived experience, my learnings and my diverse knowledge as a clinical psychologist, sustainable success coach and Author, rural businesswoman, and entrepreneur to transform my life. My vision is to inspire a global movement for a world where invisible conditions are understood, accepted, and met with sustainable solutions. Empowering people to live with energy, purpose, and fulfillment. And I do this through the Million Scene Movement. Join me and be inspired, be curious, and become excited. This is the Sustainable Success Series. So today I have a very special guest. This is someone I feel very blessed to have on here today and I think we'll have such amazing insights to share. Her name is Carla Yeo. She's a mom of three awesome daughters, a wife to an amazing man, a photographer and a very good one too, a memory keeper, a lover of light and sunsets. and being by the ocean with coffee. Family means everything to her and advocating for their daughter in recent years with her complex regional pain syndrome diagnosis has been by far the biggest challenge their family has had to navigate. They have learned a lot and live by the motto of day by day and they're absolutely full of hope. So today it's very exciting that Carla's here. She's going to be sharing her experience of living with complex chronic pain in the family unit. and her insights, which I'm sure will resonate with many others who are also supporting loved ones with similar challenges. So welcome, Carla. Oh, thank you, Nikki. That's so kind of you. Thank you. So, Carla, just to get started, can you please share a little bit about yourself and your story with Invisible Conditions? Wow. Where do you even start with that? That's a very interesting question. A little bit about myself. I would say that I, like family, you just touched on means everything to me. So when our daughter hit, uh, an injury a few years ago that presented in different, uh, symptoms, that sort of started us on this most recent journey with her CRPS. Diagnosis and that, it's a long one. Like, I don't even know how you abbreviate and, you know, summarize the, the story behind, the invisible illness there, but pretty much, uh, Georgia's injury didn't present in the normal way, a broken ankle, broken foot should, her pain pretty much, uh, escalated beyond. What it should have for a typical injury like that, which then led to a whole heap of new symptoms, progressively shifting and changing around her body, uh, in the years to come. So it's been about three and a half years for us. Looking back in hindsight, we actually can, take it back to a lot earlier than that, but at the time we didn't know what we know now. And. We're led by professionals, doctors, you know, what you're told by people. And yeah, it's been a very interesting journey for us with her, just trying to understand and more than anything, navigate her own path and work out what is going to work for her. And that's probably been the biggest challenge for us with this. It's taken us, all over the world looking for help and treatments, in the hope that she will have better days ahead. We've learned to stand up to professionals when things haven't felt right. Uh, your mama bear sort of gut instincts when you're tired. Cannot advocate for themselves, sort of kick in. And I think there's been a level of understanding with the, you know, acknowledging the patient's perspective and not putting them in a box for us certainly has been a big take out of the last few years. So, yeah, it's, it's been quite the roller coaster. It's certainly not a linear journey. There's been ups and downs, good days, bad days, everything in between. Lots of positives in there as well, but certainly way more, challenges for not just our daughter, but the entire family and people that know and love us as well. it's been crazy. It's just been, I don't even know where to start. it started with a simple role of sprained ankle and then a broken ankle and then just spiraled and shifted and moved from there. So, yeah. Yeah. And I fully get what you're saying in terms of a roller coaster and not knowing where to start because I think from my experience with my own invisible conditions, my daughters and with all the people that I work with, it is never a linear path. There can be very long periods of, misrecognition or things not being, heard or people not being seen or, or trying to find people that do know those answers also and it can be very frustrating. But also how you said about having to think outside the box and every person who is struggling with invisible or complex chronic conditions. Needs that out of the outside the box approach, everyone's individual and, and I also like how you mentioned about reflecting back. Now, you can see some sort of things earlier on, but you don't know that at the time, I don't know what you don't know. No, no, a hundred percent. So in our situation with, uh, Georgia's diagnosis being CRPS as a child, she was always. injured or in pain. And we used to put her into that box as well as parents and go, Oh, she's just a bit of a princess or toughen up and you'll be right. Shake it off. Now those earlier signs, Oh, they just, we have so much guilt about not picking up on them. Like most parents, well not as some people wrap their kids up in cotton wool, but you know, as a parent, you're trying to toughen your kids up and, you know, have resilience and that's life, you fall over. But in reflection, now we realize that Georgia had Signed, much earlier than her diagnosis that we didn't pick up one. we seem to always be at the hospital or ER getting x rays or MRIs for, for painful limbs or things that were happening that all presented normal. I say that in inverted commas, but you know, the amount of times that we were told, Oh, the good news, the results are clear and you know, yeah, that's great. It's actually not, not really validating of what we know now was those early signs of an increased pain for her. it wasn't until her injury that, that everything just derailed and, and saw from there. So, yeah, understanding is so, Crucial for within that space for patients or people that have those invisible, health conditions that typical scans or tests or blood tests don't pick up. So yes, that comes down to, Oh, if it can't be seen, well, it can't be measured. And that is so not true. And I've also heard many times people say, Oh, you know, it's in your head or psychological, but these are body mind. conditions. Yeah. They are not solely one or the other, they are an entire person, an entire being and those around them. Yeah. Yeah. And it's hard. It's really hard. I think for a lot of people to understand that it's hard to explain that to peers, even within the medical field, I feel like they try and often put you into what they do know and what, they do understand and treat it in a way that they can physically have some tangible goals and results and tests. Assess progress and treatment forward. So it really does take a deeper understanding that not, not all health conditions can be seen. Yeah. Treated that way. It's about really listening and really listening to your patients and what they're trying to tell you. So that's. Yeah. Yes. I will. Amen to that. Because the person who's experiencing it and their family, they're the expert. They're the one with all that lived experience and what you said, that day by day, you're living that day by day and experiencing that. And I think that that is one of the biggest takeaways is people listening to their patient. And gaining that insight from the family member around them. Yeah, yeah, for sure. For sure. There's, there's, you know, hearing you too, but listening and actually trying to put yourself into those shoes rather than already forward thinking about Like I'll give you an example, throughout the last few years, uh, the pain that Georgia was experiencing spread to her digestive system. So she, there was one stage during one of her hospital admissions where she was treated and just unable to tolerate any food or liquid, sort of entering like orally. And, Her veins were at a point where they were collapsing when they were trying to do blood tests and things like that. And because anorexia is a, condition that is probably more studied, more known, she was put into that box. She was 15 at the time and I was in the corridors of the hospital just, you know, Like begging for some answers and wanting her to put on weight and be able to eat and needing an explanation for what was going on. And the amount of doctors and specialists that surrounded me and told me it was really hard to hear that your daughter had an eating disorder and it was hard to accept this. And you know, you're not alone. It was put back onto me because I was the one that was saying. You know, this is not right. She, I know her, I know she doesn't have a problem with body image. She loves food. Like all the things I knew about her was just like, Oh, here's another mom, you know, not willing to accept that her daughter has this eating disorder that they knew, that was, yeah, that moments like that. It's really tough, you know, just think if they, these, these professionals are not listening. What, what chance has my daughter got when she's got no energy and her digestive system is just being taken over, like, yeah, they're, they're the really, they're the points I think that you can, and you do crumble, but it gives you even more drive to just go, you know what, this is not okay. We need to fight for her. Yeah. Yeah. Yeah. There's lots of moments like that, that we've experienced, many families experience and they're not nice. But you, yeah, as a mom, you push through cause you love them and you, yeah, you want them better. So the example that you use, it's a very common one and there's not many people who do work in the eating disorder space who understands the impact that these chronic conditions can have on that whole digestive system. That interaction between, it's not the brain to the gut, it's the gut to the brain in these conditions, that's important. And, a lot of the time, this whole thing that's going on within the gut and the nervous system and everything is completely dismissed and people, I've heard it many times, how that they will say anorexia, but anorexia is something very different, than this, because these people are wanting to eat. But physically, it is hard and I think as a result, they just get put into that box because that's like a horse rather than a zebra, but it is not helpful. Oh, 100 percent it's not helpful. And I think for Georgia too, the appointments following that, the follow ups with the team that, surrounded her. And to a degree, I don't blame them because they don't, they don't know, but we would leave those appointments and every single time Georgia would be so deflated. She's like, they don't understand. It's a waste of time. And they would use the term anorexia throughout this with her, with her in the appointments. And it's just so invalidating. Of what is actually going on and for her, instead of trusting and building that trust in and everything just kind of regressed more because it was that I'm trying to eat. I want to eat. I can't eat because I'm, it's so painful. It's not that I don't want to. And I guess she just felt unheard on lots of occasions. So yeah, that's a really like that listening and just, I don't know if, if doctors could just even save one person from feeling like that in those early stages of their journeys. Yeah. It just would make such a difference to have, we've had some really amazing help, for Georgia as well. And those people, those key people that I think of like that have really stopped and listened, sat on her hospital bed or sat with her and just let her talk and really scraped back. Like her body, whole body language has gone from being completely shut down to like, Oh my gosh, actually. They're actually listening to me and those people are the ones that make the world of difference in this space. I feel. Oh yes. There is a power in that presence, the power of someone showing up, being present, listening to you, being present. What you're saying and they're not just hearing, but actually listening and taking that on board. I think there's power in that. Oh, huge, huge. And for the parent and family too. Oh, yeah. Look, we, we've had some rocky times, but my goodness, we've had some great support as well. And, Michael and I absolutely could not have, handled this last few years. I don't know whether we've handled it very well, to be honest. Like if the behind the scenes has been lots and lots of cracks and tears, as I'm sure most families in this situation would, would have, uh, but. You know, we have been well supported by some amazing, people, both on a family friend level, but, but also probably the more understanding from, the pain team we've been working with that are really educating us and helping us to understand the science behind the nervous system. And, you know, just. Compassionate, caring, wholesome, real smart people in that space that just have been amazing. So, you know, you surround yourself with, and yeah, it's, I think there's a lot, a lot to those special people that actually listen and, you know, don't try to put people all in the same treatment route or, you know, they're really, Tailor the solution according to symptoms and the person and what's going on. That's, there's so many ways you can help, as you know, very well. it's about finding what's right for that person. I think, yeah, it's, it's very individualized. I think this care because every symptoms, everyone's symptoms are on a spectrum or a sliding scale and everybody's is different. And I like to refer to this as. Like a zebra's stripes. Every zebra has different stripes, just like every person with these conditions, their presentation is different, so there's no one size fits all approach. I love that. I really do. Yeah. Oh, true. So, has there been any specific moments or events that have been turning points? Heaps. There is heaps. When I reflect on the crazy bumpy turning road that we've been on, there's been so many along the road. And I feel the turning points for us is probably initially, Initially with all the yuckiness that came with the early symptoms and not knowing what was going on, you go through a whole ray of emotions. And a lot of it is frustration and helplessness from it. I'm speaking from a parent's perspective. I can't really speak for Georgia and how she has and other patients, but certainly as a, as a parent, it's like everything. It consumes you because as a, as a mom or a dad, it's our job to help our kids and keep them safe and healthy. And if they're in pain or hurting or things aren't right, you, you do everything you can to try and, you know, get them well and functioning and happy again. And so initially when, when stuff was happening, I guess those emotions of anger and. Being labeled like the mom that catastrophizes the situation, you know, that was something that I was referred to as a catastrophizing mom and, you know, I got really upset about that. But then, if anything, I'm like, no, I'm not, you know, I'm not going to be. Like if you, you want to put me on that label on me, I've got the energy to actually stand up for my daughter. So I'm going to do that. So in the early stages, there's a lot of that self doubt. I think initially, because you trust everything that you are told and you try everything because you want everything to be better and you're willing to take on any advice. Bye. All the advice you're given is not always helpful and it's not always suitable for your situation. So I think a turning point for us was coming to terms with the acceptance of what the diagnosis was and not believing everything you Google, Dr. Google, because if you Google CRPS, you read it's incurable. It's suicide disease. It's always, well, we refuse. You know, we know, hands down, there are better days ahead and there is a way out of this and that path looks very, very different for many, but I think that turning point in the early stages was acceptance of the condition acceptance that there is not a lot Individually that I can do to change what's going on for our daughter or my husband or, or there's a lot, there's a so much work that has to be done and so much validation that we need to listen to her rather than tell her, this is what it is, or you should be able to do this, or you should be able to do this physio exercise and push through that pain, because you've got to push through that. You've got to, all those comments are so. Unhelpful and comments like from really well meaning family and friends. And I know they mean well, but they're just, they're not helpful when they say things like, oh, Georgia's got to want to get better. You think, I'm pretty sure she's not wanting this, you know, and it's, and it's not, I think it's a lack of education and probably a lack of understanding within that, really, especially the chronic pain space is such an interesting and Complex, complex sort of, uh, health journey for those that are going through it. So I don't know, I can't even think. Turning point was definitely, definitely acceptance of Georgia's diagnosis and then being able to block out what is helpful and what isn't and being okay with that filter and having the confidence to go, you know what, we're actually We're not going to put your pressure on you to eat this much this time because this is clearly not helping and your pain is spiking and knowing, knowing when to read those signals from her takes. Yeah, it takes a lot of courage, but I think backing yourself. And backing her and listening to her is along the way, several turning points has been always coming back to her and listening to her because she knows her body the best and being a people pleaser that she is. She's tried so much to, you know, do everything that has asked of her. And. In some cases, the more she's pushed, the more pressure, the more stress that's been put often, the more stress that's put on her and expectation and goal setting and accountability, which in, in life works for a lot of people for her. It's actually the worst thing you can do, you know, so to, to understand her symptoms only heighten with those expectations. That was another turning point because initially, as her parents, Michael and I were like, right, we've got to do this. We've got to do this. We've got to get you moving. We've got to, this is like, you know, you name it. We have, we were trying to implement timetables and schedules and appointment after appointment. And I was. Too much. It was way too much. It was just spiraling her further and further. Down. Yeah. But that's what we were guided. That's what, that's how we were guided. And yeah, you do in that desperation to get your child better. You do, you'll do anything. And we did, we went to the other side of the world to a clinic that was meant to be, what is an amazing clinic, but for, for her. It wasn't the right approach for her. but we, separating our family for those months, like in total, we were not living under the one roof together for us, I think it's about six months in total was huge with our other girls and, that, but our decision to go there was another turning point because at that point we had been through Of several different treatment teams within Australia and got to the point where we were screaming out for help. Georgia was not in a great head space. She didn't want to be here anymore. She couldn't handle the pain anymore. We were desperate. We're like, what? There's got to be something, there's got to be something. And I got this email saying, we have done everything we can do to support your family. good luck. I wish you all the best. And it was kind of like, Oh, really, this is, this is where, this is where we're at, you know, and I'd like to think of that family as a fairly strong family. but when you're at that breaking point and you're screaming for help and you're willing to travel anywhere to get that support, living remotely was a real challenge. And another, another real complicated Sort of, you know, our situation with Georgia was that she was diagnosed during COVID. So access to, you know, we all know what it's like. And those years of COVID, just even seeing a GP is near impossible. So getting the help that she needed for a very rare, And misunderstood and extremely uncommon pain syndrome, was a real challenge in itself. So those initial appointments were done via zoom. it took me phoning around different pain teams to try and even get a referral scene quicker. Initially I was told I was six months before you can even get an appointment. And I'm like six months is a long time in those early stages of dealing with a chronic, Illness. So, yeah, I don't know that. I, I guess I helplessness and hopelessness initially. What are we doing? We're just hitting wall after wall after wall. Like no one's really they're trying, they are really trying, but it's not really helpful in their methods, but knowing that you've just, you've got to dig deeper and have that gumption to put yourself out there and. Push through there. All those little, points throughout the way have been turning points, for us, probably a really key turning point. And it goes back to what I was saying earlier about actually listening was, uh, I'll never forget. We as a family are always grateful for this. He is a psychologist. He was still a register during one of Georgia's hospital admissions. He spent so long with Georgia and it was a massive day of assessments and working out a plan forward for her. At that point, he sat with her and wanted to know her story. And it was a long day. She had no energy. Her pain was through the roof, but he kept talking. And then when she would say something that she would try to skim over, he would go, hang on, go back to that again. Can you tell me about, can you tell me a bit more about that? And it was almost like he was scraping back all these layers and digging into her story from her. And It's amazing. Like this huge exhausting day where none of us had any energy, he got out of her whole body language changed. And she went from facing away to the wall, curled up in fetal position, like through the roof pain to turning and facing him, sitting up in a hospital bed, talking, engaging. And he just, he was learning. He was so passionate about learning and his theories about stuff like that for us. That, that guy is just, he's a superhero. He's amazing. And I, I think he, with his qualifications and training, and we said, Oh, how do we get access to you? Like, I'm not, I'm not, I'm not fully trained yet. So he couldn't do that, but he is going to change lives so many lives just by being the way that he was. He, that was crazy, insightful, positive, In a really yucky situation. So people like him, massive turning point for us. We were like, hope there was so much hope. He's this guy coming through. He's studying. He's almost finished. He's just like, yeah, if, if they, if medical professionals and doctors and people within the. The invisible illness space come through with that willingness to listen to people and that willingness to scrape back those layers and to keep asking those questions from those that are living with it. There's so much that can be improved in that space. Yeah, just gives me goosebumps listening to that. Oh, it was, we, we still like a year and a half on talk about, talk about him a year on 12 months ago. That was, yeah, he's amazing. So yeah, going to, when we went to America, that was a massive turning point. As much as it was deflating, coming home, bringing our daughter home in a much worse condition than when we went, it was also a turning point because we learned more about her body. We learned that not everybody responds to treatment the same. We saw so many people. Beat chronic illnesses and pain conditions, heaps of different. there's so many different conditions. The RBS is just one of them, but we saw people go from similar symptoms to her, to returning to work and function walking and being able to tolerate the things that she can't tolerate now. So you leave with. It's bittersweet, like we wanted to bring her home like that, but we know, we absolutely know that it can happen. Yeah, just got to find what works for that person. So yeah, all those things I think are turning points. Yeah, definitely. And add to that hope and never give up. Like, I don't know. I just refuse. It makes me so sad when I hear people talk about having to accept that this is their life or this is how it's going to be. And I, it just, it breaks my heart because I feel like, yes, you are going to have this condition. However, you can. Manage it and you can go on to do some amazing things. It doesn't have to hold you back. But there's obviously a lot of work that needs to be done for a lot of people to, to get to that point. So it's easy for me to say on the outside. I'm just, yeah, I'm just speaking from my shoes. So I've kind of diverted here, Nikki. I'm sorry. No, it's really good. So many turning points. But I really agree that. There is, when you can hang on to some hope, but also try and find, yes, is that acceptance of living with this condition, but also life's not over, how can we continue to be a living and try and find some sort of purpose within our life. At the same time, so that's one of the big things that I focus on with my work. Sewing. Oh, it is. The sewing you mentioned that I thought was really good and that was around those expectations when there's too many expectations and um, that accountability and the shoulds and those things. How that is really not helpful. So I thought that was like a really important message too. Yeah. Yeah. And I can give you, I can give you a specific example. look, there's a period there where Georgia was on a feeding tube for 12 months. She couldn't tolerate anything by mouth, without her pain, just, yeah, causing her to pass out pretty much. It was, it was horrible, the symptoms. And we had. A dietitian who's lovely, lovely, but probably used to treating eating disorders and different, different sorts of, needs, I guess. Who said, and with our, with my push, because at the time I was wanting her to eat more, it was me that was like, right, we got to get rid of this. Feeding tubelets push for more oral intake. So it was very much driven by myself as well. And together we set goals to increase the oral intake. And I'm talking their teaspoons a day. They're not, we're not massive amounts, but we wanted to increase that to two teaspoons of coconut yogurt. You know, it didn't seem much to us. Yeah. For the thought of them by day three, going to a tablespoon or, you know, by next week, we're going to be at, instead of three times a day, we're going to do this five times a day. Like all of that was way, way too much. And in the right situation with the right patient, that would be an excellent way to move forward. And at the time I thought, this is great. We're going to be weaning off the feeding tube, but it just resulted in another hospitalization instead for us. So it's not, I don't blame that dietitian at all. It's not her fault. It's just, I guess that is an example. I've had not everybody responds the same way, and that understanding of what triggers or what, what those real fears are for a lot of people, because I believe a lot of fear, is the fears of what hold a lot of people back as well. And unless those are addressed, it's really hard for people to, to move forward. So, and trust, trust is huge. Trust is so much in this space. So, yeah, I don't know. I can't even remember what your question was now. Goals and expectations. Yeah, yeah, yeah. Look good for some, good for many, not always helpful for everyone. Yeah. So you've mentioned a little bit around trying to maintain that hope. but also is there any other practices or routines or just things you remind yourself that's helpful. Yeah, there's so much. Look, we used to, we used to feel really deflated, I guess, and question whether Georgia would get better and even her sisters, you know, when day when she has a rough days you feel like you just been in this melting pot for years and we have. So there's a lot of those emotions that go, that we go through as a family in the hope for better days ahead. And you question whether they are ahead, but for us, we, we absolutely know that they are ahead because we reflect back on where Georgia was 12 months ago to where she is now. And we celebrate. The small wins because those small wins are what add up to the big picture and For her, it's not about comparing her progress to others that were in, especially in the clinic we were in overseas, where you hear lots of success stories and everything's amazing for some people. And then sometimes that comparison often can make you feel like you're doing something wrong or why is that not working for me? Or yeah, for us, it's not about comparing her. To anybody. It's about comparing her to where she was, and not necessarily yesterday because yesterday could have been a good day and today could be a bad day. It has to be a longer period. and the acceptance of. Every day is going to look different, but overall, if we're looking at the big picture, we're definitely progressing forward and forward is forward at any pace. Whereas previously, we used to get, I used to get really frustrated that this wasn't happening quick enough that she's missing out on some of the best years of her life. Because as you know, um, Georgia's complexities and sensitivities are quite extreme. So she's unable to go to school, unable to, Leave the house. Like there's, there's lots of things that trigger, her pain, which is very, very limiting and, uh, for all our family, like we just, we would love to be able to take her out for dinner. Like, that's just not an option. That would be like Christmas for me. But at the moment I look like 12 months ago, it would look, Christmas would have looked like having her sit at the dinner table with us and now she's cooking, she's eating, she hasn't got a feeding tube. So. That's what we try to focus on and, I guess the rituals and the, the practices and the things we try to, to implement, uh, distraction as much as possible. And some days she's just, she's just, she can't and that's okay. And it's the acceptance that that's where we've got to meet your body on that day. But when we can, she's not bedridden anymore. So she comes out, she's engaging in conversation. She's, taught herself to crochet, whereas two years ago, she couldn't move her left hand. Like that was, it was in a sling. So, you know, now she's making the most beautiful projects. That's a huge win. It doesn't sound much, but when you're in the thick of it, all those things are what we try to focus on. So., if she wants more yarn, I'm like, yep, you just let me know you order it and I'll pick it up. So it's, it's finding those things that bring her happiness. And really, it doesn't, it doesn't mean she's not in pain. And I think that's the, the part you have to understand is just because she looks okay. That doesn't mean she is okay. And for anybody that's experiencing these invisible illnesses. And that's, that's often comment that they're the comments that people say, Oh, you know, she looks great today. Oh my God. Yeah. You know, not a great actor. Yeah. She could look great, but that does not mean she's okay. It's like this inner superpower of people living with these conditions that they can fake it. So they make it like they can trick. Anybody into thinking they're okay, but they're actually, it's taking every ounce of energy to put that facade on,, you know, so better days are definitely when she's up for distraction. She's up for interaction, socialization. It's really hard for her. She's lost a lot of friends because people don't understand and her inability to leave the house at the moment. It's very restricting when you're a teenager. Not at school. She hasn't been able to dance or go to drama or, you know, all those things she used to love to do is not an option for her now. So her world in that social aspect has kind of closed a lot, which is, so I guess it's, it's trying to fill that up where we can. You know, having people come over on the days that she can tolerate stimulation, but also having those right people that understand if she has to go to her room because it's too much, it's okay. That's just where we're at the moment. So, yeah, I think it's being open to, you know, to all these different things that we previously thought were impossible and encouraging her, but not pushing her, not putting the expectations on. And Yeah. More than anything, just seeing where we're at on that day. But yeah, we, we definitely in the background, it's, it's funny thing, isn't it? Like, you know, you focus, we try to not focus on her health and her symptoms and try to not bring them into the everyday, but they are very much a part of every day. So it's like that really fine balance between that validation for her, because it's absolutely so real and horrible. What she's going through, but also trying not to talk about it to not, I don't know, we don't want that to be her identity. There's so much more. Yes. Like, and sometimes I just look at her and I tell her, I just wish she, I'm going to get emotional now. I just, like, I wish she could see herself through the eyes of others. It's just. Yeah, sorry. No, you don't need to apologize. I get what you're saying, and for her living it every day, it'd be harder to see where from the outside you can see it. Oh, a hundred percent, and you know, as shit as this is at the moment, we, we go, you know what? She's gonna go on to do something incredible. This, this chapter is not going to be for nothing. She will, she will, I don't know. I'm excited to see what she does in the future, because I think, I think if you can get through this, you can do anything like this is pretty, pretty tough. And yeah, she's an amazing person and yeah. I think so. It's her mom, family basket case. Sometimes, you know, I like, I, yeah, I do love, I'm so grateful for our family and the network that we have. And, but yeah, it, it certainly takes a village, you know, it's not, It's not something you can keep yourself together, you know, people around you and, and, and those that are helpful, not, and not everyone is helpful. You kind of don't have the energy to, I don't know. I don't know. That's been the hardest thing. I think I used to always try to be so people pleasing and do everything and yes, yes, yes, yes. And I'll do this when you're exhausted. And so much of your mental capacity is consumed. Rightly or wrongly, no matter how hard you try to fill it with other things, sometimes you just got to go, you know what, I've just got to take my dogs for a walk. I've just got to go and feed my chucks or one of my veggies or get some sunshine because that's where I'm at right now. It's okay. And to be okay with that, yeah, it's very powerful to, like, I think it's important because if you're not taking that time to restore your own energy, how are you going to show up in as a mum and wife and. Photographer and all those other things. But yeah, yeah, for sure. There's been a few shoots I've done actually, where I've gone, Oh my gosh, I'm going out here now to record, you know, some happy family memories for people. And right now I'm just feeling rock bottom. Like I wish my family could jump in front of the lens, like, but I've got to be on my game because it's not, this is about them. And, you know, you go out there and you feel so exhausted. And you just want to do a good job. But with a camera in hand, for me, that's, that's where I'm really happy too. So it's, it is filling my cup up. It's creating memories for, for families or couples on the wedding day or whatever it is that's, you know, there's so much joy. In that for me, so it's like shifting that perspective to, yeah, finding those moments, I guess, for anyone, whether they're a patient or a carer or whoever is affected by these, uh, invisible illnesses, finding those moments and really, really. Making them a part of your routine, I feel is the, yeah, it's hard initially to find the energy and just to be present, but it's little things like my husband and I, we, we take our dogs for a walk. We try to do it every day. He's often working away and some days it's just. I don't know. It just doesn't work. But for us, that's a routine because we're in the fresh air where even if it's dark last night, it was dark when we did a few laps around the block, but it's that conversation. It's that, it's that time. It's just that exercising. Yeah. It's so important. So that is a ritual we do. When we can, we always have a coffee together in the mornings, that. You know, even that five or 10 minutes is like gold. I just value that so much. Yeah. And just, I don't know, try not to beat yourself up about the things that you're not doing really well and just be a bit kinder to yourself because we all do that as women. I'm sure you can relate. You know, I could be doing this better, I should be doing that, should, should, should, sometimes you just gotta go. That's the shoulds again. Yeah, yeah, yeah, for sure. So, to just sum up, is there any advice that you'd like to give to others who are struggling with invisible conditions, or for their families, or any extra reflections? That you would like to say, it's hard, isn't it along the last few years, I've been put in contact with a few families that have, got a child or a partner or a loved one going through this. And it's that desperation of often it's in the earlier stages of being diagnosed. And the one thing that stands out is that desperation to get better and what can I do and just. Like we were, I guess, a few years ago, just trying to soak in everything. I think a big message for those people is to not believe everything you hear and read and compare yourself and take on every ounce of advice. It's like, you know, when you're pregnant, every other mum will tell you all the pregnant horror stories or birthing stories or whatnot. You don't need to hear all that. That doesn't necessarily mean that's going to be your journey. Like, I think I know, understand like knowledge is power and it's nice to be informed, but I don't know that all those grim dark parts that people are scared with initially, I feel like saying to families is that's not how it has to be. And that's absolutely, you know, the, it's not the way it is definitely going to be. And I feel you can get so consumed in those dark times that you feel at times that that's how it is going to be because there is no way out. we have our fair share of hard times with Georgia. and seeing her even as recently as, The other day, she, um, last week during her physio session, her shoulder got accidentally bumped and she's got allodynia down the left side of her body. So she passed out. She went first, went into a state of dissociation. So this is about nine o'clock in the morning. She woke up from that flare. It was, oh, it was about half past three in the afternoon. So she lost a whole day where she couldn't remember because of a simple touch to her shoulder. So they're really dark times and If you choose to focus on that, because they're really horrible, like that, and that's not nice for any family members to anybody to see their loved ones go through that. I think you've got to move past that because if you keep yourself there, you lose hope that there are better days ahead. And it's a really hard balance between. I guess supporting and validating, but also knowing, like, I know hands down that that there is going to be some amazing days ahead for Georgia. And, yeah, I just, I wish that families could embrace that side more and find gratitude. I know it sounds a bit cliche with gratitude, but the simplest things we, we just. Don't take anything for granted anymore. I'm so grateful that my other girls can go to school. They're so grateful that they have the ability to dance and play sport. And, you know, even standing in the shower is a big thing for me. When I have a shower and I feel the tiles underneath my feet. And the water run down my back. I'm so grateful for that because at the moment, Georgia can't do that, you know, and it's almost like that guilt because she can't, and she should be able to, but I know she will in time. I think those pockets of gratitude for your health, for, you know, fresh food and the ability to eat and the ability to be able to sit in a car. Yeah, you, your perspective. On things changes. And I think for families going through. Or anybody, patients, people, anybody going through this, anything that is misunderstood or not visible or, rare or uncommon, or they're told it's all in their head or, you know, we could go on and on and on about this, you know, all those stigmas that, that people sort of label these conditions. Yeah, I think just hope is so important and gratitude and just knowing that there is a way out and that's finding what works for you. I think as a professional, I just love to learn from the, the lived experiences, because I think when you're actually hearing it from people who are living it, that's when you're going to learn the most. Helpful things, and you can apply that knowledge. Yeah. Knowledge is just information. Learning knowledge is just, it's just knowledge. But when you're actually learning how it's applied, how it's, suitable for different situations, how every situation is different. That's when the wisdom comes in from actually applying that knowledge. So I think learning from the people who are in the thick of it is the best way to learn. Yeah, 100%. I, I totally, totally agree with that. And I think that's a really good path forward for people who are learning to study or work in various, industries, health, or anything like that practical and lived experience is tenfold, isn't it? Yes. So true. Yeah. Thank you so much, Carla. It has been absolutely brilliant talking with you today. And I'm sure the listeners We'll get so many helpful and powerful things out of this. So thank you so much. Thank you for having me, Nikki. It's been so, so good. I feel so humbled that you even, you know, reached out to me about this because I don't know, some days you just, I feel like you just do what you need to do to get by. But overall, I feel like we're so much more knowledgeable. And empowered and on the right path now. And it's just been so lovely to chat to you. And I'm a big, big fan of yours and what you're doing in this space. I think you are going just alone and going to change so many lives with your research and awareness and listening skills. You have awesome skills. So good luck to you with all your things you're up to as well. Thank you. Thank you for listening to the Sustainable Success Series. Our content is general in nature and does not replace the advice from your health professional. Please subscribe to our show and follow us on social media to stay up to date and connected.