Do you ever feel left behind while living with your illness or health condition? You sit back and think those around you continue on with their lives, but your illness is holding you back. It's making you different. It's stopping you from participating in your life. You're definitely not living the life that you assumed would be yours. If any of this relates, then episode seven is definitely for you. In it, I want to chat about transforming your health condition frustration into motivation. So listen up for insights that have really helped me first in living with MS and now with stage four breast cancer.

Embracing Change to Live Well with Chronic Illness

You see, I get it. Living with MS, my body at times has definitely not kept up with what my mind was wanting to do. And at times, I thought it was so unfair. And life began to become increasingly difficult physically, but also emotionally. And it's funny, I thought I'd dealt with all of it. I thought that I'd made changes in my life with MS so I didn't feel left out anymore. I wasn't focusing on missing out on things because I'd built a life where it was filled with unbelievable experiences. I didn't miss out on travelling. I travelled and lived overseas by myself. I volunteered in Romania by myself. So I did all of these things, but sometimes those moments where you feel frustrated, those moments where you think you're missing out, they happen. And that's okay. It's what you do with that frustration that helps.

Last year, we purchased a hundred acres of land, and I keep talking about this because I'm so excited about it. We purchased this land, a place where I believe I'll be able to continue to heal. And it was last year that we introduced my parents to this new piece of land. And I said, "Andrew, take them, take them for a walk, you know, show them around, show them our plans, what we're wanting to do with the land, where we wanted to build our house, where we wanted to put the sheds." And I sat back and I took a photo of Andrew, Paddy our dog, Lori our dog, and mum and dad walking up the little hill. And when I looked at that photo the next day in my phone, I felt a bit sad. I felt frustrated that yet again, MS meant I was missing out. I couldn't go with them on that walk because using my walking stick, there were such uneven surfaces. You know, it's a farm. So there are rocks and um, yeah, dips of dirt around. So walking up that hill, I couldn't do it safely, and I didn't want to slow them down. I thought, no, they go off and have a look and explore. But when I was looking at that photo, fortunately, I was reminded about an insight I gained many years ago and one that I wrote about in my book and now talk about even more in my Huddle2Hope Roadmap. And that is the experience of agitation signals to myself and the universe that I'm not content with the status quo.

So just pause for a moment to think about that. The experience of agitation or frustration when you're feeling like you're being left out and it's not fair, that because of my illness I can't join in. Life is hard. Life is tough. Life isn't fair. Well, that I believe is a signal to myself and the universe that I'm not content with the status quo. I'm not content with how things are. And to live well with our health conditions, we need to embrace change. We need to say, "Hey. I'm not happy how things are, but that's okay. I'm going to use that as motivation to make changes in my life."

And that's what looking at that photo did. It was a massive wake-up call to me because since being diagnosed with stage four breast cancer, my MS took a back seat, and that's okay. It had to. I had to deal with the tumours in my body, but this was the wake-up call I needed. Because MS needed some attention. I needed to focus on my physical health, and I needed to start doing whatever it took to start moving again and to improve my physical wellbeing.

2 Steps to Transform Your Chronic Illness Frustration into Motivation

This is what I've come up with, and this is what I want to chat about today. There are two steps to transform your frustration into motivation. So if you're sitting there listening to this, if you're driving the car, or if you're sitting at home, or whatever you're doing, if there are times when you're feeling frustrated, then I want you to be able to use this frustration as your motivation to instigate change. And I'll go through these two steps. If you're not in a position to have a piece of paper with you, that's okay. Keep listening, and you can go back to this episode. You can also download the transcript, which I add to wherever you listen to your podcast. Because I think these two steps are big game-changers.

Step 1. Recognising When You Feel Frustrated

Step number one: Recognising when you feel frustrated. Sounds self-explanatory, but I don't think it is because I think sometimes we just use these overarching sentences, you know, we say, "I'm so frustrated. I'm so over MS. I'm so over having cancer." And that's it. But you need to dig deeper if you're going to instigate change. So, you need to reflect on your daily experiences and identify those moments where you're feeling the most frustrated, as it's these moments that signal to yourself and to the universe that you need to consider making changes to your life.

Frustrations experienced in living with an illness or health condition

I'm going to give four examples. Some of these may or may not relate to you. But these are different situations where you might recognise that you need to make some changes in your life. Don't worry about what the changes are yet. But just listen to some of the examples, and you may relate to these. You mightn't. That's fine. Don't get too caught up on whether they do or don't apply. Just get yourself into this process of reflecting on your situation and really honing in on the different times where you do get frustrated.

•  Physical limitations

For me, and this is the gift of MS, I guess, is one of the greatest frustrations I've had over the last twenty-five years are the physical limitations that stop me from participating in activities. And this may be similar to yourself. Your body, like mine, is a little bit impaired. I can't do the things my mind wants to do. But it also might be the physical limitations because of energy or because of your stamina or whatever it is. So, you might have to sit out of a family hike, or you might have to not go to the pub with friends because standing, dancing, you know, that's beyond you at the moment. You might not be able to go to a Taylor Swift concert, which, currently, Taylor Swift is in Australia. She's played at Melbourne last night in front of ninety-six thousand people, which is amazing. And when I heard that on the news this morning, I thought, there's no way physically I'd be able to be part of that experience. And sometimes, being left behind because of the physical limitations of your condition can be really, really frustrating.

•  Feeling isolated

You might be feeling frustrated because you're feeling isolated. Because you can't always catch up with friends or family in the ways you want to. Social gatherings, even something as simple as going to meet a friend for a coffee, or going to a party, they become really challenging. At times, I know for me, going into the city, too hard. It's so difficult getting a park, walking, meeting up, being in crowds. So you have to sometimes say no when you really want to say yes. And this isolation can be really challenging emotionally. And you all of a sudden in your life don't necessarily get to share in those moments of having fun with friends and being part of social gatherings. And you feel left out if you're sitting at home and not part of these things.

•  Impact on your work and career

Another frustration, which I know I've experienced a lot over the years, is the impact your illness has on your work and your career. Sometimes your condition may make it impossible to keep up with the demands of your work. Sometimes we might have to do jobs which we know we're capable of so much more, but our bodies might allow us to do more. And that can be really frustrating. I know I kept pushing myself with MS. I kept pushing myself at Telstra early on. So Telstra's Australia's largest telecommunications organization. And I kept pushing myself in my job. I kept having to go to hospital for relapses because I didn't want MS to stop me from getting promotions. And I didn't wanna be stuck in jobs I knew I was capable of doing so much more, but my MS wouldn't enable me to keep going. And I kept going into hospital because I was pushing myself too hard. And this is frustrating because work's not just about income. I realise I took a lot of self-worth from doing well in my career. I was stimulated by the challenges at work, and I wanted to have a career, a corporate career. And I was so frustrated that MS stopped that from happening.

•  Loss of independence

Another frustration is also the loss of independence and having to rely on others, and gosh, that's frustrating. And it's also really difficult to cope with. I know when I was in hospital, especially back in two thousand and three, I was lying in a hospital bed. I was unable to use my hands and arms. So not being able to do that introduces a whole new level of dependency. Think about it. You know, I was in my mid-twenties or late twenties, and I was needing help with bathing and going to the toilet. And then, not just the independence of our physical functioning, but then I also couldn't use my leg or sitting in a wheelchair, unable to move. I couldn't drive. I couldn't get to appointments. I couldn't leave my apartment, which was up three flights of stairs. So that lack of independence, and at that time,I moved back to my parents' place, you know, that's really tough in your twenties, and that is really difficult to cope with. So the lack of independence, I certainly relate to, and it is absolutely a source of frustration when living with your illness.

So that's step one. Recognising when you feel frustrated. So it might be in relation to physical limitations. It might be in relation to feeling isolated. It may be in relation to the impact your condition is having on your career. And it may be the loss of independence. But acknowledging these sources of frustration is crucial. It's not about dwelling on them but recognising that these are basically signposts. They're pointing towards the areas of your life where change is both possible, but it's also necessary. And I think this is why I'm in a bit of a unique position doing these podcasts, doing my courses, on healing mindset and workshops because I've lived through these frustrations.

I'm not going to dismiss how frustrating it is living with your condition, but I'm also here to challenge you because we're faced with a choice. We can sit with this frustration, or we can use that energy as motivation to instigate change. So just repeating that, we're faced with a choice, sit in this frustration. And we can acknowledge that it is frustrating. I'm not telling you not to do that, but I know I don't want to sit in the frustration, sit in the stagnant negative energy because that's not good for my physical, mental, emotional wellbeing. Instead, I've learned how to use this energy as motivation to instigate changes in my life. And that's what I'm hoping you'll do as well.

Step 2. Actively Taking Steps to Create Change

Now for step number two, actively taking steps to create change. So if you're not happy with the status quo, if you're feeling frustrated about the impact your illness is having on different aspects of your life, then you need to be prepared to instigate change. But change at times can feel really overwhelming. So instead of looking at those four areas of your life and thinking, oh gosh, I've got to change, I'm not sure where to start,  what to do, and then thinking can't be bothered, or I don't know how to instigate change. It’s really important to break it down and just to start with small steps.

I love this Chinese proverb that I'll probably stuff it up. But it's about, don't be afraid of going slowly, be afraid of standing still. And I think that's really appropriate when you're living with a health condition because it's not about making massive changes to start with. It's about making small steps, just making little changes to start creating the momentum you need to start moving forward.

•  Improving your physical health

Okay. So let's quickly go through how you can start creating change in relation to the different frustrations you may be experiencing with your illness or health condition. So in step one, we talked about physical limitations in relation to your health. So for me, getting through the absolute frustration of having a body that didn't do what my mind wanted, I needed to start with really manageable exercise goals that respected the reality that I live with a neurological condition. So things like starting the day with stretching or doing light yoga, which I haven't done for a long time, but I used to do. Even just a few minutes a day in the morning, and then gradually increasing that as I'm able to. And that's what I think is really important for us to recognise. You've also got to a gym and look what other people are doing. I would feel frustrated that I couldn't keep up with the program. But that's not a reflection of me not wanting to be healthy and regain my strength. That's the reality of living with MS. And that's why often I became really frustrated in gyms because I think there was this assumption that me not finishing all the reps or following the actual program to the letter was a reflection on my lack of motivation, and it wasn't. It was just my body wasn't able to keep up. And pushing myself to the limits, that would be detrimental to my rehab and quality of movement. So it's really important that if physical limitations is a point of frustration for you, definitely start exercising and building on your physical wellbeing, but do it in a way that is appropriate, I guess, to your current health status.

•  Addressing isolation and building connections

Another point of frustration we chatted about was feeling isolated. And in living with an illness or health condition, isolation is very real. At times we just can't keep up with the pace of life of other people. But having said that, it doesn't mean we have to live in isolation. We just have to think about doing things differently. So if for me, going into a busy coffee shop in the middle of town is too difficult, that's fine. Catch up on the phone or catch up at another coffee shop that's less busy, that has parking. So we just have to think about making small changes. So we still feel the support of friends and family. But we just do things differently. You can also join online communities or support groups. As long as they're in line with how you want to live with your illness, then they can be a great source of support and really help you not feel so isolated.

•  Enhancing Work and Career Opportunities

The third area of frustration we talked about was in relation to the impact your illness may be having on your career or work. And I know this was really true for me, particularly early on when I was trying to keep up with the pace of a corporate career. If you're feeling really frustrated about the impact your illness is having on your work or career, maybe it's time for a conversation with your manager. Maybe it's time to look for a different type of work, one that is more in alignment with your goal of living well, of maximising your overall wellbeing. Or like I have over the years, look at setting professional development goals, look at learning new skills, go back to University, like I did, or adopt software that makes life easier. Or even look at running your own business, like I'm doing now. There are so many options, but just start exploring them. As like with physical limitations, like with isolation, if your frustration is about work and your career, you can start creating momentum, start instigating changes by just making little steps, small little changes to start with.

•  Regaining independence through adaptive tools

Then the final frustration we talked about was the loss of independence, and this is a really tough one. And at times, we need to be dependent on others. And that can be really, really tough to accept. But what I encourage you to do is identify daily tasks that you find really challenging and explore adaptive tools or aids or technology that will assist you with those specific needs. At times when I couldn't use my hands and fingers, I had to use voice recognition software so I could continue with my studies. So there are so many different technologies out there that can help you and occupational therapists have so many amazing ideas that instead of thinking that you're completely dependent on others, explore ways that you can maintain independence. But again, this is a fine balance of time, balance I've found, of being really stubborn, not wanting any help, and accepting help, but still being motivated to being independent when you can.

Harnessing Chronic Illness Frustration as a Catalyst for Change

Let's go back to me watching Andrew and my parents and now two dogs walking up the hill as I sat back, watching, and taking a photo. And I had a choice. I could have become more and more frustrated and resentful, looking at photos like these. Or I could do something to change this status quo.

Over the years, I've had a love-hate relationship with walking aids. Early on, aggressive MS relapses meant weeks and sometimes months in a wheelchair, having to learn how to walk again. I was also really reticent about using a walking stick. I was worried about what other people would think. But years later, Andrew would say, "Who cares what other people think?" And it's so true. Why let the reactions of others stop me from embracing my life? And I knew I wanted to enjoy and fully embrace this purchase of new land. And I knew I couldn't do that by feeling left out, by sitting behind on a chair while other people were exploring our land. And I knew this time a walking stick wasn't going to cut it on our new block. The surface was way too uneven. There were rocks and sticks. So the risk of falling was just too great. And I had so much to deal with with MS and cancer, the thought of breaking a bone was too much. I just didn't want to be at risk of doing anything else that would jeopardise my health.

Years ago, the thought of using a walker made me feel sick in the stomach. I just did not want to do it. I thought that means I was progressing. And as I talk about in Episode 5, that whole battle narrative in relation to an illness has a lot to answer for when you're making decisions that are better for your wellbeing, but you don't make them because you think your condition has won. So I didn't want to think that using a walker meant that somehow MS was getting the better of me. Instead, I decided to get a walker and use this to explore our new block. And thank goodness I did. Now if you're following me on Instagram, which is @hurdle2hope, hurdle number 2  hope. You'll see that just last week, I walked. I'm not sure how far I was saying it's like forever, but I walked a really long distance from where we're camping out all the way to our front gate. And I would never have been able to do that without a walker.

So I've followed this process myself. I've recognised the frustration, and the frustration for me last year was not being able to explore our new blocks. And then I've made changes. I've decided that instead of living with that frustration, instead of being consumed by that negative energy that it wasn't fair that other people could walk and I can't, then to instigate change, to actually think okay, I can use a walker, and that will help improve my physical wellbeing. It also helps in stopping me from feeling isolated because I walk along with everyone else. And my walker helps me to feel more independent.

Conclusion: The Power to Change in Livign With an llness

Living with a health condition or illness can at timees, or maybe all the time, be so frustrating. I get it. But today, I hope I've been able to highlight that we have the power to transform this frustration into motivation to change the status quo.

And it comes down to two easy steps. One, recognising when you feel frustrated, but being specific. Am I frustrated about physical limitations, about social isolation, about the loss of independence, about the impact my illness is having on my career, or it might be something completely different, but they're my four.

And then step two, actively taking steps to create change. So by breaking down your frustration by breaking it down into manageable actions, like setting achievable goals for physical activity, reaching out for social connections, seeking flexible work arrangements, or utilising adaptive tools for independence, there are so many ways that we can make change.

If what I'm talking about resonates with you, if you're not happy with the status quo, if you're feeling frustrated, but you want to instigate change in your life, I know you'd get enormous benefit out of a free on-demand Masterclass I've put together. You can visit huddle to hope dot com forward slash masterclass. I'll also put a link into the show notes. Because in this on-demand video, I'll share more about the Huddle to Hope roadmap. And part of that is experiencing agitation, and what you can do to regain your power.

So I think this has gone a bit longer than I thought, but I hope you found it useful. I really don't want you to be filled with fear, and that's the key. We're going to live well with our illness.