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S5E6 Over a decade of Overcoming MS with Renee Coffey

Listen to S5E6: Over a decade of Overcoming MS with Renee Coffey.

Welcome to Season 5 of Living Well with MS, the Overcoming MS podcast where we explore topics relating to living well with multiple sclerosis (MS). In this episode, we are pleased to welcome Renee Coffey as our guest. Renee has been following the Overcoming MS Program for over 10 years. She talks about her Overcoming MS journey, her story that was published in the ‘Overcoming MS Handbook’, and her advice to those just starting out on the Program.  

Keep reading for the key episode takeaways and Renee’s bio. 

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Bio:  

Renee started on her Overcoming MS journey shortly after her first MS episode in 2011 so has been following the Overcoming MS program for over 10 years.  

Renee’s career and personal life

In her day job, Renee works full-time as the Deputy CEO of the Australian Indigenous Education Foundation, a role and cause she cares deeply about. Renee is mum to two boys, aged 7 and 9 and gets to share two older children with her partner Jason – wonderful young women aged 20 and 21. 

Renee’s lesions have disappeared and/or shrunk

Three years ago, following a routine MRI, Renee was told there was no disease progression. Also, one of the lesions on her spine had disappeared, and one had shrunk to just millimetres. Last year, Renee received the great news. Not only is there no new disease activity, but now the two lesions in her brain have disappeared as well.  

Renee’s passion for Overcoming MS

Renee is passionate about her Overcoming MS journey and credits her good health and so much of the richness she experiences in her life to the Overcoming MS program and community. 

Selected Key Takeaways

MS Symptoms are varied and sometimes confusing, mimicking other conditions

“The itching was across one of those bands around my torso, on one side. My GP clued up on to that pretty quickly. Once he tried a few things, and that didn’t work, he actually gave me a referral to a neurologist, which for me was quite surprising because I thought I had been bitten by a spider. Then, I started thinking maybe I had shingles or something like that. As far as I knew, a neurologist was just for your brain, so I was thinking, ‘hang on a second, that seems like an odd referral.’ But I googled the neurologist and he was a specialist in MS.”

Following the Overcoming MS Program will improve your overall health and wellbeing

“The Overcoming MS program has brought so much more to me than the absence of decline. I actually think it has brought a lot of richness to me, by way of just changing my outlook on my health and my wellbeing and putting that at the front and centre of what I do. I am definitely a much healthier person now, in a holistic sense, than I was before my diagnosis. I love the way I eat. If you told me tomorrow that I could take a magic pill and you’ll cure my MS, I would not be running straight to a cheese platter or digging into a steak. I couldn’t think of anything worse.” 

Renee hiked part of the Camino de Santiago (an ancient Pilgrim route through Europe) with her family

“If you had told me 10-plus years ago that I was even going to want a hike 215 kilometres, I wouldn’t have believed you. But I think that’s part of this change. I never played team sports before my MS diagnosis, I never had any level of fitness or any interest in any kind of fitness activity or outdoor activities. And so that’s all come from this much healthier view on holistic health.” 

To hear our latest tips and news about living a full and happy life with MS, like Renee has done, make sure you sign up to our newsletter 

Transcript

Read the episode transcript

Overcoming MS 

Welcome to Living well with MS. This podcast comes to you from Overcoming MS. The world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. If you enjoy the show, please leave a review. These are quick to do and really help us. And now here’s your host, Geoff Allix.

Geoff Allix 

Joining us on this edition of the OMS Coffee Break is Renee Coffey. Renee is a contributor to the OMS handbook, and is in the chapter First Months After MS Diagnosis with her story. So welcome, Renee to the coffee break.

Renee Coffey 

Hi, Geoff, really great to be here.

Geoff Allix 

So to start off with, could you tell us about your first MS symptoms and the diagnosis process? How did that go?

Renee Coffey 

Yeah, absolutely. So I first started experiencing symptoms in 2011. I was 29 years old. And I just moved down to Sydney to take up a promotion with my employer. And I started to experience some itching across my torso on one side. And it just wasn’t resolving. And I ended up going to the GP and initially they gave me some kind of cream antihistamine type cream to put on it and the itching didn’t stop. And so I went back again. And I think fairly quickly, the GP recognized that something neurological was going on, which I am to this day incredibly thankful for because I know so many people spend a very long time before they get a diagnosis.

Geoff Allix 

Yeah, especially something where because there must be countless people where it’s not MS.

Renee Coffey 

Exactly is just a skin complaint or it is an eye issue or something. Yeah, the itching was across one of those bands, you know, around my torso on one side. And so he he clued up onto that pretty quickly. And once he tried a few things, and they didn’t work, he actually gave a referral to a neurologist, which for me was quite surprising because I thought I had been bitten by a spider. And then I did start thinking maybe I had shingles or something like that. And as far as I knew a neurologist was just your brain. And so I was thinking, hang on a second, like that seems like an odd referral. But I googled the neurologist and he was a specialist in MS. And so the penny dropped for me. I went and saw him he ordered an MRI as you’d expect. But again, I shouldn’t assume that because I’ve heard so many people where they’re not offered an MRI for years of symptoms. So again, I was incredibly thankful that, you know, within weeks I was getting an MRI. And while I had the MRI and while I was waiting for those MRI results to go and to go and see the neurologist, the symptoms shifted and changed and it developed into more of what you’d call an MS hug. On one side, it was a constrictive feeling. And then I started very quickly to lose strength and sensation in my right leg. The symptoms travelled down that leg. And initially they were a feeling of the leg being strange to me or not my own or feeling like I’m touching my leg through a glove. But then I started to get kind of foot drop and just clumsy tripping over things and having a bit more trouble walking. And so I think in that period between when I had the MRI and when I went to see the neurologist for the results, I’d pretty much worked out what was going on. So the actual diagnosis itself wasn’t too much of a shock by that stage.

Geoff Allix 

And then how did you discover Overcoming MS?

Renee Coffey 

So the neurologist, when I when I went to see him and he kind of put the MRI up against that that backlight and pointed out what he called sizable lesions that were on my spinal cord. I kind of I said to him, is there anything that I can do? Are there tablets I can take? Should I take some supplements? Should I be eating something or not eating something? And he just kind of laughed and said, Oh, no, just try not to think about it. Try to push it as far out of your mind. There’s nothing you can do. Don’t worry about it at all. And that is just so totally not my personality.

Geoff Allix 

Did your neurologist offer you any disease modifying therapy?

Renee Coffey 

No drugs. Didn’t mention vitamin D, he didn’t want my levels to be tested, he was really just like, come back if the symptoms, you know, if you have another episode of these if the symptoms don’t resolve or if they get worse, but otherwise nothing, you can be doing. And he wasn’t even willing at that stage to say initially that it was MS. Or that it could even be MS. And I really pushed him on that. And he said, Look, if you had to push me now, I’d say it’s probable, probable MS. And so with that, I kind of got went away and resigned myself to being in a wheelchair basically. And, you know, started worrying about living in the houses that had stairs, and you know, just kind of went into a bit of that spiral. And a number of people sent me through various links, and you know, lots of different suggestions of try this. And, you know, this essential oils going to help and all of that, and I got bombarded with it. And it was actually really quite frustrating because I was trying to deal with a life changing diagnosis. And I wasn’t really interested in kind of snake oil salesmen and you know, having to put energy into that. And strangely, one of my dear friends, Jan actually sent me a link to the OMS website and said, my friends got breast cancer, but he’s on this program. And I think you should have a look, it’s actually designed for people with MS. And I went online, incredibly skeptical. And I was kind of I went on the website, and I was thinking, what, where’s the what are they trying to charge me? And what’s the catch? And what are they selling? And, you know, I was really like quite negative as I looked across the website, and then I, of course, read about George. And I saw that the entire program was spelt out there for free. I didn’t have to pay a cent to be able to see all of the recommendations. I ended up buying the book. And it was posted out to me. And I’ve told George this many times and we have a laugh, I actually read it in one sitting, it arrived, I started reading it, I read it all through the day, I read it at the dinner table, I read it in the bathtub. And then I hopped into bed. And I kept reading until the early hours in the morning and I finished the entire book. And when I woke up the next morning, I implemented the OMS program in my life straightaway that next day.

Geoff Allix 

Because now even the books free as well, because that’s what got me is that there was all these people charging money for these cures. And that’s and it was the one that was like, well, actually, this one is completely free. Lately, in the UK, Australia, New Zealand, they said they’ll send you the book for free. Exactly what they’re actually sending me this for now. And in other countries, certainly the US. There’s an ebook version, which is free. So it depends on where you are with the paper one or the ebook. But certainly, yeah, I know the information is there on the internet. And it was okay. This is not they’re actually giving me stuff not asking for any money at all.

Renee Coffey 

Absolutely. Yeah, yeah. And I think that was the difference between everything else that had been sent through to me until that. And I think, you know, reading George’s story, it’s just so compelling. And, you know, people often ask, you know, what’s the book that changed your life? And people often choose works of fiction, and I’m sure I could list off a couple of those. But if I’m very honest, if it was that book, and it changed my life in the most profound ways possible. So I’ll always be very thankful for that.

Geoff Allix 

And when did you start seeing results from Overcoming MS?

Renee Coffey 

So I’m not sure what the recommendation now is for the newly diagnosed, but back then you had to take fish oil supplements, nine months, which was, you know, before you could change to flaxseed, I’m not sure whether that’s been revived from the start, so the fish oil was, that was a that was a challenge, I have to say. But in terms of results, I recovered from that I started RMS within three months of the initial onset of my symptoms. And I was recovered, I had a full recovery from my first episode. And I that was at about 19 weeks. I you know that that episode kind of morphed, I had various other symptoms that came with that episode, but by 19 weeks that was resolved. And I am yet to have another relapse or episode since then. So that’s been over 10 years now. What I did find and when I got my conclusive diagnosis of MS was a number of years ago, probably it would have been maybe I’d say four or five years after I had had that episode and I’d started the OMS program, I had an MRI, I’d actually avoided having an MRI for many years, I just really didn’t want to know what was going on. And then I changed neurologists. And they were quite insistent that I do have a checkup, MRI, and that MRI showed two lesions in my brain, which weren’t in that initial one. And because there’d been such a long time between that first scan and the second scan, there’s no way to know when those lesions occurred in my brain, I believe that it happened before my body stabilized on him OMS, there is a number of years that it takes for that to really kick in and for you to, you know, rebuild your systems. And so I think in those early years, I did actually acquire these two additional, these two additional lesions, however, and we can discuss this later if you like, but, you know, my trajectory since then with lesion load, and everything else has been so good. I think it did stabilize the disease for me, I’ve not had clinically I’ve not had any episodes of notes since then.

Geoff Allix 

And is that what keeps you on the Overcoming MS Program?

Renee Coffey 

Ah, that’s a good question. I think that is certainly part of it. I think being well is certainly part of it. But I think the OMS program has brought so much more to me than the absence of decline, I actually think it’s brought a lot of richness, to me, by way of just changing my outlook on my health and my well being and putting that at the front and center of what I do. I am definitely a much healthier person now, you know, in a holistic sense than I was before my diagnosis. I love the way I eat. If you told me tomorrow that I can take a magic pill and you’ll cure my MS. I will not be running straight to a cheese platter or to dig into a steak I couldn’t think of anything worse. So you know, I think what keeps me on there, I do have regular MRIs, the neurologists would love for them to be annually, I don’t enjoy them that much. So I do them, you know, every couple of years. My last MRI was last year, and the two lesions of my brain had completely disappeared. And one of the lesions on my spine is completely undetectable and not there. And the other lesion has shrunk to just two millimeters. And so they to have that written in black and white in my MRI report. You know, it just was a real validation. Like I know I’m well I don’t really need an MRI to tell me that I’m well, but to just actually have it there in black and white from the from the doctors is, you know, it is really encouraging.

Geoff Allix 

Yeah, like you said, MRIs aren’t pleasant things. But I just had the results, when recently is just really you know how you feel. But it’s I don’t know why you need a machine to validate what you feel. But it was just because my nerves, they’re sort of fading. So they’re sort of and they’re not turning up bright white, you know, they start off bright white. And then it was just they were like Fady grain in the same thing. So they’re blurry edges. They’re not like if you get this you get this smoldering MS where the edges of the lesion still active even though the middle bit really isn’t. And he said no, that’s not smoldering, it’s not there’s nothing happening around the edges. It’s all fading into sort of greyness now so you can see the difference from bright white into sort of fading away anything. Yeah, it does either is, you know, because you can get undetected lesions as well, where they don’t actually have much effect on you just because where they are. And then there’s still activity but knowing that there’s not activity.

Renee Coffey 

That positivity isn’t it. And I think for me that the those appointments are stressful, because I’m not opposed to going on disease modifying treatments, I’ve been open to that from the very beginning if they’re warranted and if they’re needed. And I’m my understanding of what would warrant it might be different to my neurologist, but I am actually very open to that. But every time I have these MRIs, I basically dive in and do all of this deep dive research and I’ve got all my notes prepared to have a really robust discussion with the neurologist about whether now’s the time to you know, assuming there’s going to be more of a lesion load is now the time to go on disease modifying treatments. So I kind of psych myself up for that. The last few times, you know, when I’ve sat down they’ve gone right, right, you’re gonna clear MRI, you’re all fine, you know, keep doing what you’re doing. My neurologist isn’t particularly a big proponent of OMS, but doesn’t discourage me from it. And I’ve always said that’s all I need from a neurologist. I don’t need them. I can I absolutely can advocate for myself and I can and I can be an advocate for the OMS program and understand that I just don’t need them to be antagonistic to towards it. And my neurologist is certainly respectful that it’s something that I want to do whether or not she thinks there’s merit to it. She’s respectful of my decision. And that’s pretty much all I could ask for from a neurologist, I think.

Geoff Allix 

Your story is published in the First Months After MS Diagnosis chapter of the new Overcoming MS Handbook. So what was it like to work on the new on the project for the handbook?

Renee Coffey 

I have to say it was something that was just incredible. It was an incredible honor for me, as I said, you know, the the actual OMS book that George wrote, has played such a pivotal part in my life. And I was asked and approached to write this Chapter Introduction at a time where I was celebrating my 10 year OMS-aversary, I celebrate my OMS anniversary every year. And so this was this came out just this was published around the exact same time as as that milestone for me. And so it was really quite emotional for me, because I think, you know, when we’re diagnosed, I think all of us put our minds towards the future. And I just remember reading, at the time of my diagnosis, what the risks and the rates were for, you know, needing a cane at the five year mark needing a cane at the 10 year mark and needing a wheelchair at the 10 year mark. And they were pretty terrifying statistics to have, you know, in those first couple of weeks after diagnosis, and to actually be standing there 10 years afterwards, and to have, you know, not only have this book exist in this program, and all the richness that comes from that, but to have my story included in that in a in something that’s had such a huge role in my life was just a phenomenal, it was an amazing experience. And just really, it really meant a lot that my story hopefully could impact others in those first dark days of their diagnosis, because I think we can, we can certainly do better for that with people.

Geoff Allix 

And you’ve got two young children. So how do you deal with family prevention? For people with MS.

Renee Coffey 

So yeah, it’s something I’ve taken really seriously from the start. I had my children after my MS diagnosis, and I felt and everyone else this is it parenting in general, everyone has to do parenting the way that they that it aligns with their conscience and you know, their beliefs. And I felt for me, having children who would have an increased genetic risk of developing a neurodegenerative disease, and we shouldn’t overstate that risk. It isn’t. It isn’t as high as some people think. But it does exist. For me, bringing children into an existence where they do have that elevated risk meant that I needed to do what I could to mitigate those risks from the start. And for me, it really was very much from the start. before conception with both boys, I ensured that my vitamin D levels were excellent. You know, I was and am incredibly compliant with the diet. And when the children were conceived, I continued my vitamin D supplementation and my flaxseed oil supplementation throughout pregnancy and of course people need to, I’m not a healthcare professional, people need to talk to their doctors about this and make sure they’re getting the right advice. But for me, I maintained that supplementation throughout both pregnancies and throughout breastfeeding as well. And I breastfed as long as I possibly could with both boys. We know from the data that that does have some protective factors as well. And so I also supplemented the children when they were younger with vitamin D supplementation after they had finished breastfeeding. I live in a place in Australia that has a lot of sun and we do have a really high skin cancer risk here. But I have walked that really fine line with the children with sunshine between the risk I think here and in a place where it is so sunny and there is that real risk of skin cancer is that you have them covered up all the time and you don’t let them outside. I have tried to be a lot more pragmatic with their sun exposure and you know ensure that they don’t have sunscreen on up here a lot in Brisbane probably down here for for anybody around the world but children are covered in sunscreen in the morning before they go to school.

Geoff Allix 

I found because it because I’ve been to Australia quite a few times it’s it they were a swung wildly from one to the other, didn’t they? It was like people were just getting I mean you see people who are older who got bits of their missing of its nose missing and stuff because they’ve skin cancer and then They went completely the other way, which is understandable. And then went completely to literally, as you say, you know, when we went to Australia initially, and we’ve got friends out there it was you put some cream on light and you let it soak in. And before you go out the house, you don’t, you don’t see the sun until you’re completely and it was slips that slop was always a thing. And you’re always putting on hats and T shirts.

Renee Coffey 

So so the risk is that children are getting no sun exposure intentionally to mitigate one risk, but then actually increasing their risk for something else. So I was just quite honest with their childcare providers early on that I wasn’t putting on sunscreen in the morning. And that they were just to have sunscreen applied before they went out at the peak times of the day, because you absolutely should be doing sun protection again, in the peak times. And so they would have their sunscreen applied after that early morning period before the mid part of the day. So just being conscious of that, again, I’m not a doctor, and people need to follow health advice. But for me, it was just making sure that the boys that the boys were getting some sun exposure and some vitamin D supplementation in terms of diet. I made the decision early on that they would be dairy free. From all of my reading about children and their development, I didn’t see dairy as being essential and essential food group for children for their development. So they have been dairy free their entire lives within our nine and seven years old. I understand they’ll come a time when they might want to introduce dairy in their lives. And we’ve been talking more as they get older about why I made those decisions for their diets and their, their very understanding of that. But you know, that will be an evolving conversation with them as they turn into their own little humans with their own, you know, beliefs about these things. But they have had meat through their lives. So they’re not OMS compliant in that way. But they’ve definitely, you know, not had dairy. So I think it’s just balancing that you know, what the growing needs of children are? And what risk factors we can remove?

Geoff Allix 

My daughter will only eat chicken breast in terms of meat or chicken, breast and fish. And so she’s pretty much Overcoming MS plus chicken breast, my son will eat meat. But he still won’t eat dairy. So he’s and I think, and you sort of saying about that family risk, and I know it is elevated, but I think you need to tell the children is still low.

Renee Coffey 

Absolutely. We shouldn’t overstate it. And it shouldn’t. It shouldn’t be something that we ourselves live in absolute fear of.

Geoff Allix 

I’m just certainly they’re not going to get MS. But there is an increased chance but but I think my kids, especially because my father had it. I think they see that as like granddad, Dad, I’m next. And I’m like, No, that isn’t the case. You can if you reduce your risk by which you can reduce it by increasing vitamin D and getting rid of dairy and you know, exercising and all these things, then you can take it down to probably lower than typical population.

Renee Coffey 

That’s a conversation I’m looking forward to having with them when they’re a little bit older. Because the OMS plus chicken if I ended up with two boys who chose that as adult, I would be very, very happy. But I do have one child who is an absolute carnivore, so I’m not sure about the chances.

Geoff Allix 

Yeah, my son is yeah, he so he’s red meat. So but it’s still mindful of you know, that, you know, we’re sort of saying, you know, just try and make sure it’s good meat at least exactly like cheap sausage.

Renee Coffey 

Yeah, look at the overall kind of saturated fat intake of your diet because it just for human health. It’s you’ve got to keep an eye on that.

Geoff Allix 

So outside that you recently hiked the Camino de Santiago with your family. So firstly, for because this is global. What is it? And how was the experience?

Renee Coffey 

Yeah, so the Camino de Santiago Well, there’s many different routes and they go through a range of different countries France, Portugal, and Spain. And it’s a traditional pilgrimage to Santiago de Compostela. In Spain, which is on the west coast of Spain. And the route that we took was the French Way, which in total is just under 800 kilometers. We didn’t do the 800 kilometers, we did about 215 kilometers of that, as a family, my partner and I, and the two boys aged seven and nine. I had my long service leave this year. So I’ve been with that same organization that I was with through my diagnosis. I’ve now been with them for almost 13 years. So a little bit delayed with COVID. And everything else, but was finally able to take the time off to do that to do the walk.

Geoff Allix 

So you have completed 215 kilometers of it with with two young children as well.

Renee Coffey 

Yeah, yeah, they were amazing. So some people who do the Camino, there’s services where you can have your bag sent forward each day, so your hike each day to pick your location. It’s all done on foot, through little Spanish villages and towns, and it’s quite amazing countryside to and from farming land to kind of cross through vineyards. And some people send their backpacks, it’s all done with your, everything you need to carry on your back. And people have services that send them backpack to their next location for them. But I’m super proud that the little is actually carried all of their own equipment themselves for the for the whole journey. So they were little champions. And I think the most amazing thing for that, for me was watching the locals, especially like old Spanish women, who was you know, sitting on chairs outside their homes, they would yell out to the boys in Spanish that they were champions or that they were strong, and they would applaud them and the other pilgrims there weren’t, we didn’t run into hardly any other children the whole time that we did the hike, and other and so we were a little bit of an anomaly there. And so other pilgrims would have their photos taken with the boys, or just take photos of the children. Yeah, it was shopkeepers would give them lollies and treats and lollipops. And so it was just really amazing. It was an amazing experience to do as a family. And again, you know, if you’d told me 10 plus years ago that I was going to be I was going to even what I think that’s the point I was even going to want a hike 215 kilometers, I wouldn’t have believed you. But I think that’s part of this change. You know, I never played team sports before my, my MS diagnosis, I never had any level of fitness or any interest in any kind of fitness activity or outdoors, activities. And so that’s all come from this much healthier view on on, you know, holistic health.

Geoff Allix 

And you mentioned your job just then. So what is your work? And how do you manage any work related stress?

Renee Coffey 

That’s a very good question, Geoff. So I’m the Deputy CEO of the Australian Indigenous Education Foundation. And we provide boarding school scholarships for Aboriginal First Nations children in Australia. And I’ve been with that organization, as I said, for almost 13 years. It’s, it’s a it is it. There’s a lot of a lot of work to be done and a lot of high pressure situations. I think for me, the main thing has been recognizing what is stress and what is a stressful situation, versus what is a high pressure situation and really being clear in my own mind about Yes, the pressures on yes, there’s a lot to be done. There might be constricted timeframes, with constricted resources. But it’s stress for me means how do you experience those situations, because I’m always going to be in this kind of role. I’m always going to be in those types of situations, but how I choose to experience them is where the stress comes in. And if I find that I’m, if my stress levels are rising, and our bodies often have little signals to tell you that you are, no matter what you’re telling yourself, you’re you’re actually physically stressed mine is that I often get a cold sore. And in the past, I haven’t had this for a while but my leg, my bad leg would go tingly. Or I might have a strange patch that might go a little bit. My hand a couple of years ago went a bit numb and strange. And it’s just these little signs that Okay, actually I’m experiencing this situation as a stressful situation. And for me, it’s about unpacking that and was trying to understand that yes, it’s a high pressure situation that needs to be addressed and needs to be worked through and trying to myself approach it more like a puzzle, or a challenge or something intellectually engaging, rather than having an enabling and allowing that really physical response to the situation. I don’t know if that makes sense. I do a fair bit of public speaking. And that’s my one top tip on that is, when you’re sitting there and you you feel a bit shaky, and your legs go a little bit weak, and your heart is racing, I do always tell myself, Oh, wow, I’m really excited. And this adrenaline is what I ended. That’s what it is, you’re actually getting the physical adrenaline. And the thing about adrenaline is it actually helps us with our performance. And so I always think to myself, I had it just the other week, I did a I did a presentation. And I have to admit, I did get a little I felt, I did feel a little bit of that adrenaline coming through. And I thought, Oh, that’s great. I’ve got a little bit of that adrenaline, I think I’ll need that up there. So that’ll be a help. So I don’t know, I just think I turned 40 this year. And I think just as you get a little bit older, you get to know these tricks, and you get to know ways to to make your brain work for you rather than against you. I think you just get better practiced at that. So that’s absolutely when it comes to stress, just really being mindful, being self aware, listening to those cues. And then being really pragmatic about what is the source of that what is causing me the stress. I said to my boss, just recently, oftentimes I don’t stressful situations, or stress situations that other people find very stressful, they don’t tend to stress me out, I actually do genuinely see them as a challenge or a puzzle or a problem. What causes me stress is usually other people’s stress responses. So when other people have got heightened stress levels and might not be performing at their best and might be, you know, behaving a little bit differently, those kinds of behaviors are stressful for me, but you know, even having that awareness is helpful.

Geoff Allix 

So you also attended an OMS retreat in the Yarra Valley. So can you explain that experience what it does? I know I’ve been to a valley it’s lovely place. But can you explain what the retreat was like and how it was?

Renee Coffey 

it was amazing. So I think I’d been on the program for about a year when the opportunity came up to the center in the Yarra Valley. And that was when I met George, for the first time George Jellinek. And it was a really remarkable experience with some people who I am in touch with to this day. So that’s, you know, over 10 years ago now since since I went there, I think for me, having been on the program for a year, a lot of the people who weren’t, hadn’t started the program yet or were in the very early stages of it, it was kind of an entry into OMS there were a couple who had been on it longer than me. But for me doing it at that one year mark was was really helpful because it just solidified the behavior. So were a couple of things have slipped or slide. It was just able to it was a really good health check for me to bring them back in line to make sure I was being more OMS compliant. It also helped immensely with meditation, which is something that I to this day, always struggle with, but it was a really good eye opener, being forced to meditate, you know, multiple times a day there’s nothing that kind of gets To over it like, over the hurdle than just being actually, given the time and the space and opportunity to do it. That was really good. And as I say, there were just some amazing people. We have lost a couple of people from that group. Since then a couple of really special people have passed on. And you know, that even just to have known them through that, and through the, through the time since was an always will be really special.

Geoff Allix 

And so you’ve been on the program for 10 years. So is there anything you still struggle with? In the OMS Program?

Renee Coffey 

Meditation? I know that it’s often. I am always busy. And I’m always running things down to the very last second or minute, and anyone in my life can attest that but you know, I just, if I’ve got a spare hour, I’ll put an hour and a half worth of things into that hour. That’s just how I live my life. I’m always running from one thing to the other. The other day I went, two days ago, I went to Canberra for work, and I was up at 4am. And I was on a plane at 5am. And then I landed back in Brisbane at 6:30pm. And there was a board meeting starting at 6:30pm. So I went straight from the airport to the board meeting. And the board room meeting finished at quarter past 10 at night. Now there’s there was literally no time in that day to meditate. But I kind of it is a cop out because I kind of use that busyness as an excuse for not having time, I am aware enough to know that there absolutely is time when you make time for these things. And when I have been really compliant with the meditation. It’s the mindset that I’ve used. I’ve done small, smaller, bite sized pieces. And when I was really good with it, I was telling myself, you know you don’t leave the house without brushing your teeth. So you know that’s built in, you just you would never do it, it doesn’t. There’s no scenario where you’re so rushed for time you don’t brush your teeth. And so I was in a very good headspace that meditation was exactly like that. You just don’t leave the house until you’ve done it. But, you know, I regularly fall off the bandwagon. So yes, that is the struggle. You can live mindfully without meditation, mindfulness, always same thing. So you can actually have a mindful dog walk. I found the Camino was amazing. Like, I yeah, I just had a phenomenal just being able to walk, you know, with the children, observing the light, and the sounds and the smells and just being incredibly present. I would say that entire trip was pretty much meditative. From the start to the finish, it was just a really present. I’ve never been quite so present. And it’s mainly because I didn’t have to work. And I didn’t have board meetings. And you know, the children were with me and walking in the same direction as me always. But absolutely. So I definitely embrace mindfulness. And I do practice yoga, and I do I do meditate, but it’s just not part of my daily, my daily rituals, which I think, you know, I think I would be better off if it was.

Geoff Allix 

And just as a final question. If you were to go back and talk to your newly diagnosed self, what piece of advice would you have?

Renee Coffey 

I think I would just say, and in some way, I kind of knew this on the inside, but I think I would just say you’ve got this. Like, I always kind of knew it. I always I always knew that I’d be all right. No matter what happened. But I think just to reinforce that even stronger in me that, you know, I do come across often very confident. And you know, OMS has given me a lot of confidence. But I do even even you know, within the last couple of years, I do have quite fearful moments, you know, something starts to tingle, or you know, you get a little bit of it, and they’re probably just normal people things right? I’m sure other people have tingly things at times. But if I know that I’ve had a bit of a stressful period, and then I start getting some symptoms. I start thinking oh, is this the beginning of it? Is this the beginning of the downhill descent and so that fear still lives with me even now. It’s always kind of somewhere in the background. I’ve got a lot you know, a lot more confidence as time has gone on. But I think I would just want the me that got diagnosed to understand that, you know, you’ve got this and you know, the next 10 years are going to be the best 10 years you’ve ever I had in your life with the most amazing experiences you’ve ever had in your life and your MS diagnosis is central to that it’s not in spite of your MS diagnosis, you’re actually going to be a better person because of it, you’re going to be a healthier person because of it, you’re going to have more insight, more empathy, more experience and understanding than you ever imagined because of that diagnosis. So don’t begrudge the diagnosis, just really embrace it. And I think I think I did that. But I think, you know, I just like to reassure that person a little bit more that it’s going to be okay.

Geoff Allix 

Okay, and with that, thank you very much for joining us.

Renee Coffey 

Thank you, Geoff. My pleasure.

Overcoming MS 

Thank you for listening to this episode of living well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast you’ll find useful links and bonus information there. Have questions or ideas to share? Email us at podcast at overcomingms.org or you can reach out to Geoff on Twitter @GeoffAllix. We’d love to hear from you. Thanks again for tuning in and see you next time for tips on living a full and happy life with MS. Living well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice for medical advice please contact your doctor or other licensed health care professional

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