Episode 1. MY STORY

'You may not always end up where you thought you were going, But you will always end up where you were meant to be' – Jessica Taylor

Telling your story is crucial for emotional healing and understanding. It validates your experiences, connects you with others who may relate, and educates those who want to support you. It empowers you to take control of your narrative, fostering resilience and providing a sense of purpose through sharing personal struggles and triumphs.

Transcript

Welcome to "Inflammation Superhighway"! I'm Claire Tierney, and I'd like to pay my respects to the custodians of this saltwater encircled country where this podcast is being recorded. I honour the elders, past, present, and emerging. This is, and always will be, Aboriginal land.

Hey there, and thank you for joining me on "Inflammation Superhighway" Episode One. This is my story of living with multiple sclerosis. It's my journey, and I'll share my stories. Twenty-eight years ago, in 1996, I was diagnosed with MS at the age of 28. I'm now 56. When I was diagnosed, in all honesty, it could have happened earlier, but my initial symptom was slight and didn't really stand out. It was a bit scary because it was so unusual, and I now know it's referred to as Ocular Neuritis. It's quite common as the first marker for multiple sclerosis. So, my right eye was blurry, but not just a "I think I need glasses" kind of blurry. The text where I was reading was crystal clear, but everything outside of my point of vision was blurry.

I questioned it and went to see a family friend who was an ophthalmologist. He was pretty onto it, but didn't let on to me. He sent me off to have my eyes tested and then to a neurologist. So, I had tests and MRIs over a period of time before they made their firm diagnosis. Although now lumbar punctures are given pretty immediately, back in 1996, they didn't do that. I probably went through a lot of symptoms that I just put down to my lifestyle - drinking and partying too much. Many other symptoms were probably MS symptoms too. I had night sweats for a long time leading up to this, which was ridiculous. I used to have to put a towel down on the bed before I went to sleep because I'd wake up soaking wet. Therefore, I was pretty exhausted most of the time. When I did get my diagnosis, I went to see a kinesiologist to balance out my body. He first said he was going to treat me for chronic fatigue, which, waking up with night sweats every night, I was totally exhausted. So, I developed chronic fatigue on top of it all. I wasn't sleeping well and was working pretty hard in hospitality, event management, and theater, mostly for myself. I enjoyed indulging, which is pretty much my personality - to overindulge. I lived that life for quite a long time. It's not surprising that I had chronic fatigue as well. But to cap it all off, I was coming towards the end of an eight-year relationship.

Well, you know, it's like, I'm not here to talk about the relationship itself, but no matter what, ending a relationship, when it comes to an end, it's stressful, whether it's a private relationship or a work relationship. So, my levels of stress were high, and my sleep was poor. I was sweating like a crazy person every night, so I was probably dehydrated. I was living hard and fast, so I guess my diet was pretty ordinary too. But back then, when I was diagnosed, it was really medical, which means they weren't really talking about diet and gut health. In fact, back when I was diagnosed, no one knew anything about the importance of your gut health and microbiome. Now those words are bandied around a lot, and we're very aware of it, but we weren't back in Australia. No one was honoring how important meditation is for your wellness. Now, in 2024, we are aware that meditation and the practice of mindfulness are a big part of our mental and physical health.

So, when I was diagnosed in 1996, my MRI results showed that I had some lesions, but not many. Just a couple, but no pressing symptoms from the outside. You know, I had a blurry eye and was suffering from night sweats, but I'm not really sure if they were MS symptoms. They could have just been my lifestyle. I also could occasionally wake up with swollen joints, especially on my knees. And again, I was doing a fairly high level of karate, so that could have been from that. It was also something else called banding, which not a lot of people speak about these days. It felt like you had a big fat rubber band around your waist. None of these symptoms stuck around or were unmanageable. So my diagnosis was relapsing-remitting MS.

The diagnosis did not gel in my mind with my reality. It seemed like a huge conclusion from a blurry eye and some occasional night sweats. But that's what they said I had. Of course, what happens next after you get a diagnosis? You hit home and you do your own research. But the way the diagnosis was still a little shaky. This is a 30-year-old memory, but I still believe it was very much in air quotes. The diagnosis went like this: "Hey, Claire, you're really fit and healthy." Well, I was really fit and healthy, actually. I was a brown belt in karate and was training to become a black belt. I also practiced yoga. I was flexible and strong. Even though I was physically exhausted, I was fit and healthy. So when the neurologist says, "Hey, Claire, you're really fit and healthy. Just go and come back when you get sick," it was kind of freight. I'll have to say, quietly freaked. And so in '96, they didn't put you on immunosuppressants straight away. They do now, I believe. And basically, the words "there's no cure" kept going around in my head.

As we all do, I ran off and looked up all the information I could find on MS. It kept saying an autoimmune disease with no cure. So I looked at "no cure" as really meaning that the medical profession hasn't worked out what's going on. Because really, in scenarios of no cure, if you lose a hand in an accident, the no cure is yes, your body is not probably going to grow a new hand. But when you've got an illness that you don't really 100% know what causes it, "no cure" really means we can't explain it, so we don't have a cure right now. But it's still pretty overwhelming after you've had a diagnosis to go home to your house and go, "What now?" And of course, we'll look up Dr. Google and medical books or what have you and try to find out as much information as we can, which is extremely overwhelming.

But they didn't send me home with a mental health care plan or anything like that. And in fact, they didn't know much about mental health either. So, they sort of sent you home, and it was a bit of a hit and miss. There were some immunosuppressants they were trying, and over time, I was offered different immunosuppressants. I've got to say I never really loved the idea of self-injecting every day or every three days or whatever, but the options were there. But they weren't so insistent that you get on these things straight away. So they were also saying to you, "

"So they were also saying to you here, 'We have this. It's not going to cure you.' And it possibly might make you better, but it could slow down your getting worse. Which again is mind-boggling, especially when you were as fit and as healthy as I was at the time. So it's an enormous decision to make about the path you take for your health. And I've taken the path of trying to get my body to the maximum health and strength so that I can fight this disease as much as possible.

My body on its own.

So in that regard, I mean that my history with unwellness, with my mother, was very much the taking me to see a naturopath or a chiropractor. You know, back in the eighties when we were doing that, chiropractors, naturopaths were not common; they would consider it a little bit alternative. And when I was unwell with glandular fever, and I was 14, well, we went to see a naturopath. And I will weigh into the conversation about glandular fever at a later podcast, because there's a lot of research going on about the mindset. Glandular fever was probably the first trigger for multiple sclerosis, but I don't see it as being confirmed, but it's certainly intensely discussed currently.

And there are current drug trial studies looking into this connection. But for me, tackling wellness is about getting, as I said before, your body into its best state to be able to do what it is programmed to do. What I mean by this is your body can self-heal. For example, you cut your finger, you put a band-aid on; three days later, you come back, take the band-aid off, and it's healed. And that is a very simplified version of saying there is a built-in system in your body to self-heal. So to get to the grassroots about how to put your body into a state where it can start to heal itself, probably looking at it from the other end of saying, put your body in its best wellness state so that it doesn't get run down enough to end up with a disease. Which, of course, in the world of looking back and hindsight, not getting the disease in the first place is the ultimate. But when you've got it and you've got to pare it back, looking at all the ways you can support the self-healing process of your body.

So, I can't stop thinking, maybe I've done something or put something in my body, or I've done something to my body. And I need to look at how to rectify this situation and start supporting my body and loving my body, and giving it what it needs to be super healthy when you're told that you have something, multiple sources, that is causing your body to attack itself.

I sat there thinking, why would it do that? Like, why would I wake up one morning and my body would go, 'Hey, I don't like you anymore. I'm going to attack you.' And all I could think was somewhere along the track, I'd done something or I'd put something in my body or I'd put myself through something that had triggered. And I don't think I was beating myself up thinking I'd done it on purpose. It could have been just living in a house with mould or living near a factory or whatever.

These are just concepts, but I certainly didn't believe that my body was going to see itself as the enemy. So what I found out in my research was that it wasn't so much that I'd done something to my body, but more that my lifestyle and choices had been triggers in my body for the genetic expression of this disease.

What I did really was trying to research all the ways to support my body. And, you know, the first one was trying to understand what your myelin sheath was and why it was important. And anyone listening to this probably knows what myelin sheath is, but it's the best I can explain as the bubbly coating on your nerves that run all the way down your nervous system. And there are gaps between the myelin sheath, which is called the synaptic gap, but basically, the information as it leaves your brain or your gut or your heart or whichever trigger point of the story that it wants to tell, but let's say, I've got an itchy cheek and I think, 'Hey, Claire, move your hand and scratch your cheek.' Well, I don't do that consciously, but the thought comes from my brain out and it bounces all the way down the nervous system.

And if it gets to a part where the myelin sheath is damaged or gone, it can bounce all the way along. And then at that point, it can just disappear. So the information isn't getting to the part that you want it to go to, and that causes breakdowns in the system.

So the mindset I have is okay, so the myelin sheet is disappearing. How can I support my myelin sheath to reappear? I don't mean this like reappear like magic. I just mean if it's being damaged, how can I support my body to heal the myelin sheath or slow down the damage or stop the damage? And again, when I was diagnosed, no one was really talking about that. And in fact, they used to say, you can't regrow myelin sheath, but now I believe there are studies currently, and they have had success in mice, and I believe they're doing a trial as we speak about regrowing myelin. So potentially down the track, there will be a drug that suppresses your immune system to stop it from attacking itself.

Or at least there'll be a drug that helps you rebuild the damage. But for now, all I can do is try to support my body to be in its best chemical balance too. To do that naturally. So going back to my initial symptoms. And as I say that we're mild. And I did have a couple of times within the last 28 years where major things did happen, and they're called flares. So when your body flares up in a certain area, and I did have some crazy ones. I remember one morning, going to get out of bed and just collapsing on the floor because my legs didn't work. And crawling myself back to get up and sit and try to work out what was going on. And I know that I had to take some steroids and things at that time. But I also know that when I look at videos of myself walking to the swimming pool, I can see how I'm swaying sideways because I'm trying to get the balance and the gait of my walk was becoming stilted.

I also see a lot of videos going up on TikTok and then what have you with people struggling with their walking? And I noticed that, and it's happened to me too, that your hands start to kind of curl slightly upwards when you walk to try to create some balance.

And I think about eight years ago, I'd say I started having trouble walking, and I was using a cane. So in that scenario, I started to fall more and I was injuring myself, and I never injured myself crazy bad, but I'm sure you could. And so currently I now walk with a

Over time, and probably again about six years ago, I was re-diagnosed as having Progressive MS. So we were talking about the initial diagnosis. And no matter how brave you are, no matter how glass half full you are, it's scary. You know, scary because the future's unclear, suddenly, like overnight, you suddenly think, you know, "Oh, there's all sorts of scary stuff," goes through your imagination. And you know, you can go to the dark places. And let's face it, your imagination can go crazy. And if you are prone to thinking the worst, the worst may never happen.

MS presents itself really differently and quite differently in everybody's bodies. So when you see what someone else is going through, it may never happen to you. But your mind can go down these rabbit holes. And nothing was going on in my body, particularly when I was first diagnosed, that stopped me from living the life I wanted to live. I was living and doing the work. That was pretty intense and physical. Long hours on my feet. I do have a bit of a sticky finger up at the diagnosis and get on with life attitude.

I did put my backpack on at the start of all of this and got the hell out and traveled. And worked and I've had two beautiful, significant relationships in my life. One lasted for seven years while I was studying through university and beyond. And a wonderful life partner, for 23 years, with whom I had a child. And I've been an entrepreneur, setting up multiple different businesses, a dog walking business. I've changed jobs. I've pretty much worked for myself most of my life, have worked hard when the work's there, and I enjoy life when work isn't there. And I've lived overseas and I've lived in far north Queensland and really, you know, I just didn't let anything stop me. But I can reflect on the super significant times where things changed and flare-ups happened. Where the stressful aspect of finishing relationships and the weird effect that the hormonal changes have in your body with menopause. Crazy, having a baby didn't affect my symptoms, but me going into menopause did. So, I can reflect on life and what the big trigger points are.

And I can now formulate a way better picture and then understanding. But I'd have to say I'd be lying if I didn't say in the last 28 years, whether there was symptom or not, whether I was, you know, in my best, highest capacity or not, it was ever-present. You know, and it was always the elephant in the room. It loomed as a dark cloud in the dark places and recesses of your mind. And I will go into more mental health and depression stories. But I don't want anyone to believe that for those years while I was just living normally and going hard, that MS wasn't there. You know, but I also have to say, I have had through this whole journey the support of amazing family and friends. And ever since I was diagnosed, I've had the support of two loving partners back to back, which have both allowed me to bloom, move forward in life with, you know, the bravest of confidences that I have to face the world with. And that when my MS symptoms first arrived, which again was distressed, I've had the support to hold myself strong. And it might just be my personality, but I still do believe that my community and my friends and my family were a major part of that.

Moving forward in the learnings and the changes and the growth in the health and wellness industry, I firmly believe that stress and diet are going to be considered the major players in all illnesses, auto-immune and other. So I'm going to put those things up there, how important sleep is and how important water is, how important peace of mind is, and how important your diet is, and how important where you live and who you live with. Stress comes in all bundles and in all sorts of ways, out of the blue often. But if I'd known the importance of all of these things, you know, how really important they were, I may have done things a little differently, but I'm not regretful for any of the choices that I've made. I've tried a lot of treatments, a lot of non-mainstream treatments, and I will talk about them. A lot of them, because some of them have been magnificent for my general health. But as I said before, I'm 56 and I have been. This thing has been a guest along with me for 28 years, half of my life. And I think most people, up until recently, like the last eight years or so, would not have known or observed anything in my body as having, you know, just anything close to a disability or even being aware of an auto-immune disease. And that's the weird thing with MS, you know, you can have it and it can be hidden for so long and in so many ways. And then suddenly in a moment, you're having an episode. And then all, even the episodes can be a bit hidden. You know, I sometimes, I remember being so exhausted one time that I just couldn't even finish a sentence. I had to go and immediately have a nap. I could drop off for a nap for 20 minutes and then come back to be fully myself straight again.

But I didn't nap. I've always used to think, like, I felt like I passed out. And I think, well, this is amazing. Strange and amazing, you know, you can wake up in the morning, sometimes I have a lot of ice baths and I will talk about that. But you can wake up full of live, jump around, put some music on, sing, dance, make breakfast, head out the door, go off and do a few things, and then stop for a chai or a coffee. And suddenly the sun comes out in its full glory and you're loving life. Go to get up off the chair...and...can't move!

Um. And it's, it's, it's just so hard to explain, really, because it's so inhibitory too. Anyway, it's a rollercoaster is what I can say. It's not just a rollercoaster over the last 28 years. It's a roller coaster every day. You know, and that rollercoaster is physical as much as mental. So you've got to check in all the time and be very mindful and very kind to yourself. You know, that's a really big part of this illness, being kind to yourself.

So I think what I want to say that with the diagnosis, I own it. I respect it. I haven't got to the stage where my reflection, I would say that it's the best thing that's ever happened to me. But it certainly has introduced some major life changes and some enormous growth. And I am at peace with it because it travels with me. You know, and if I fight it, it gets harder.

So I've got a lot to say about those issues that come with eating the wrong food and working too hard. The importance of laughing, I want to talk more about that, laughing yoga, how menopause affected my health so radically, considering it was never anything that was mentioned of that potential, big hit. You know, the issues of your safety

You know, the issues of your safety when you're out and about on your own, becoming invisible. That's something I will talk more about: your struggles with the choices that you have to make all the time, ownership about that with the drugs that you're offered and the drugs that you take if you do choose to take them, empowerment, reinventing yourself, which I've had to do multiple times, with, you know, not being able to do some of the jobs I used to do. And I've mentioned sleep and meditation, but the importance of community, oh, my goodness, such a big topic. But you know, this podcast, I've got a lot to say, as you can tell. There's a lot of episodes coming your way. I will focus on all these things that I've touched on today. But basically, I've just told you, you know, I started my journey and bits and pieces about how it progressed. And I haven't really talked about me so much, but you'll get to know me as we travel along. So there's much more to say. But I think I'm coming at you in short bursts; we can take in a lot more information.

So, I'm going to leave it here today. And I thank you for cruising the inflammation superhighway with me. And until the adventure continues, stay well, and remember to enjoy the ride.