Episode 2 (part 1) OVERWHELM & ACCEPTANCE

"Beginnings are usually scary, and endings are usually sad, but it's everything in between that makes it all worth living." - Bob Marley

Receiving a negative health diagnosis can be profoundly overwhelming. It triggers fear, uncertainty about the future, and a flood of medical information to process. Coping involves emotional support, understanding the condition, and adjusting daily life, creating a significant challenge to one's well-being and sense of stability.

Transcript

Welcome to Inflammation Superhighway. Well, I'm Claire Tierney. I live in Australia. 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, hey, thanks again for choosing to cruise Inflammation Superhighway with me. I'm Claire Tierney, Episode Two, part one. It's a conversation about the diagnosis, the overwhelm, and the continuing balance between the peaks and troughs of the rollercoaster that is multiple sclerosis. Recording this week was quite emotional for me. I'd like to provide a content warning.

 The material discussed in this podcast is sensitive in nature and could potentially trigger emotional distress or discomfort for some listeners. If you find yourself feeling triggered or overwhelmed by any of the topics covered, I encourage you to reach out to a trusted friend, a family member, or a mental health professional for support. Your wellbeing is important to me, and I want to ensure that everyone listening feels safe and supported. Thank you.

I have a quote today from Bob Marley: "Beginnings are usually scary and endings are usually sad, but it's everything in between that makes it all worth living."

 Let's hold on to that thought. Right-io, diagnosis. Being diagnosed with anything can cause a shift in your energy, not just for you but for the ripple effect onto those that care for you and your loved ones. And there's no roadmap, no book of step-by-step procedures to follow. I have to say that being diagnosed with an illness with no recorded cure doesn't have very rosy outcome predictions. It's an intense life shift.

So, in Episode Two today, I've chosen a topic that came up from last week's episode, and I want to talk about it: overwhelmed, fear, denial, all those emotions that go through when something like an illness diagnosis felt like an invisible dodgem car or bumper car came out of nowhere and knocked you sideways, pushed you onto a completely different trajectory than you may have thought. And I wasn't ready. I was not ready for any concept that my life could have a dark future. So in the immediate, it seems really obscure.

 I said last week I was super fit when I was diagnosed, so it just did not match. My reality. Um, I finished uni in 1989. And I really never saw myself as a career woman in the world of nine to five. Um, but I did go to uni and I finished a university degree. I did a three-year degree in four and a half years, so I think that probably reflects how much fun I was having and how little study I was doing. I was studying a Bachelor of Science and I double-majored in Immunology and Genetics. That little bit of irony of it, I kind of had a background to understand what was going on in the diagnosis, but it still didn't make it any easier. I was living out of home and I was working three part-time jobs, so basically full-time. And I was working a lot for a company called ATM, which is Australian Tour Merchandising. And I was also working for the company that had the contract with the tennis center in Melbourne and for the merchandising as well. So I was working at a lot of rock concerts at the tennis and all of those outlets where we sold t-shirts and programs and posters. Do you know them? Every concert in the world has them. And so my work with them part-time became more like full-time because I was offered to manage one of the new contracts that they had. So the Victorian football went national and became Australian rules football. So I was offered to manage the team of anywhere from 18 - 25 people at every match and every ground in Victoria as it started to grow into the national sport. I had a blast working for these, but I'd never, ever, ever been to a football match. And suddenly I was at every football match on a Wednesday night on a Saturday, on a Sunday, sometimes on a Friday night, mostly just within Victoria, but sometimes I had to go to other states and manage some of the teams as the contract expanded. I was a big picture girl. I was really good at big visions and big events and organizing large groups of people and staff and creating cohesive teams.

So I was pretty busy, but I loved the job. I loved it was energetic. Fun. I've got to have access behind the scenes for the football and many of the rock concerts that I worked at and the tennis, when I did the tennis for those three weeks. I was responsible for making sure that everybody. The stock, the finances. We're secured. I had to troubleshoot constantly, which was my jam. I had to move fast and around big venues and basically, you know, I was having fun, but I was working hard.

And why am I telling you this? Because I feel that most of my work has been physical and required high energy. And that I heard actually heard something the other day. And somebody said something that I've often thought. With my diagnosis that 'We've only got a certain amount of energy in a day.' And I don't want to put a number on it. Just let's say it's a, we have 25 points of energy per day. I think I used about 50 a day. And so I pretty much pushed my body as hard as I could for as long as I did and I was training. Also in karate. I was a brown belt. I did mention that. Last week and. I wasn't sleeping long hours and I was having fun and partying hard.

So when I look back at that time and, and look, I was. In my twenties, so, of course, you've got. Endless amount of energy in the twenties. I really used as much of it as I could in every day.

But the goal we've. Finishing uni and working that hard was to. Save a lot of money and go overseas for as long as I could. So over the three years after uni, they finished in 89. I left Australia in 91 to two years. I built up a lot of savings and I put my backpack on and, um, To go one-way ticket out of Australia. I went to Thailand overland through Russia and into London. I was really lucky in London that my brother was living there, so I didn't have to stay in the backpackers. I was. Independent. I was bold. I was brave. Fearless. I was going to conquer the world and I did. For quite some time, actually. I came home through Africa. And when I returned, I picked up the pieces of a university relationship with a wonderful man. But after some years, I realized that. Well, we were really good friends, but we didn't want the same things out of life and we're moving in different directions.
So, and I was living in his house that he had bought. And. So I finished that relationship. The reason I mentioned the relationship is that when you end any relationship when you win, work as well or a friendship or, you know, and that don't always have to be because things are going wrong. Sometimes it can be just. That. You moved to another part of the town or, or part of the world and you lost contact with people. It. It can be quite stressful. Well, in fact, it can be. Super stressful when you're finishing an emotionally entangled relationship. So soon after I finished that relationship.

Then I got the MS Diagnosis in 1996. And. I well. I said before, felt like a car had hit me sideways. Um, But. I also know, like, as an individual, most of my life, I've done everything on my own, even in a relationship. So I went to see the specialist on my own. I received the diagnosis on my own. I don't remember. Much about. The doctor or the room. I remember it was a long process back in. The day, they didn't do a lumbar puncture straight away and tell you, they kind of was a bit of a comparison. 30 years ago. So it took a little while to get the diagnosis. But on the day.

My memory, as I said, of the, where I was, or the doctor is vague. But I do remember that I went home and stared at the wall for a long time. I think I smoked a joint and drank some scotch. And then I cried. I cried and I cried. I'm fairly sure. I was thinking things like, 'why me'. You know, again, it made no sense. And so. For anybody out there listening. It's. Uh, really berserk. Thing to get a diagnosis with. Really scary prognosis given to you.
Which I'll talk about in a sec. Um, but. That. makes no sense in the way you are in your life at the time. And what you thought your future would be.

Deepak Chopra has been recorded saying you can believe the diagnosis. But not the prognosis. And he is tapping into. the. reality that, you have a lot of control. over your future. And you can influence your life. By not only the way you eat. What you drink or what you do for exercise.
But by the way you think. And what you feel.
And I believe he's tapping into the control we have over the choices that we make. I did not know about. Deepak Chopra. When I was diagnosed. But I was fairly sure. That I was going to. Ignore the prognosis.
And I wasn't going to be. Living in a cotton wool life. I was going to keep. Living a free life, but. In reality, it didn't work out quite like that. I did go on and continue to work full-time, but I was not traveling. I was going to work. And then coming home and going to bed. It was such a big jump from the life that I had lived. And I don't think anybody was more surprised about that, than I was, because. As a young person. I, I, I have a lovely life in my twenties and I was. And I am. A lover of my life. And when I was diagnosed, I thought, my life was over.
And at the time, I pretty much ignored the prognosis and decided that it was going to be nothing like what the medical system had been saying it could be. So I continued my life—it was very fast-paced and, oh, a little frenetic. Um, but I started to keep my eye out at the same time for things to introduce into my life to improve my health and wellbeing. Usually outside the mainstream, I was looking for things genuinely capable of improving my health.
Now, I'd say a lot of folks out there in the medical world will say that nothing is going to stop the progressive aspect of multiple sclerosis. But I do believe, and I have seen in my time, the fact that you can put it into remission, like you can put cancer into remission.

What I was looking for in the world of health and wellbeing at the time—I was looking at kinesiology, acupuncture, shiatsu, things like blood cleaning and cranial sacral massage. And Ayervedic retreats.

So basically, what I was trying to do was encourage my body—and I still am—to be in its best capacity to be strong against this raging thing inside me that apparently had turned a switch in my body and I was suddenly eating myself or destroying my own cells. Again, a concept that is really hard to take on board. You know, like waking up one morning and just going, "Hey, Claire, I'm not paying enough attention—I don't have to start attacking you until you sit down and listen to me."
I don't know, again, none of it made sense in the way that I was living and wanting to live my life. So I received the diagnosis after a long travel and an emotional relationship breakup. Then I spent the next short while, I guess, because the relationship breakup was about three to four years after I came back from overseas. And I was sitting one day thinking, "What the hell am I going to do? How do I manage this?" And I was trying to remember when I was the happiest, because I read a lot about how your mental stability is really important in your wellbeing. And I thought, you know, the happiest I've been ever is when I'm traveling. So I bought a ticket, I went to Vietnam, I spent a bit of time there, I came home, I got a puppy, and did you know?

Shoot forward 14 years, and I've been traveling pretty bloody well, actually. I have had a few of these symptoms come and go. And I'm still with the same boyfriend, and I've become an entrepreneur. I had a catering business, I had a dog walking business. I closed my catering business, but I sold my dog walking business and we both headed to South America. Oh yeah, and I had to rehouse my dog with a beautiful couple who looked after him for the other half of his life, pretty much until he was about 18, 19 years old. So bless him, he had a good time, and we went off traveling.

So we took off for about three years, we went through South America all the way through. We bought a car and we sold a car, caught buses, and we met lots of amazing people. We ended up back in London for a period while we worked and caught up with relatives and got some more money in our pockets. And then we managed to secure a job in Spain with a marvellous group of people. We lived in a tiny little village, we worked hard, we had a lot of fun, and we were really enjoying the fact that we were speaking Spanish again. Just as the year was drawing to a close, we were contemplating taking on another year's contract, I found out I was pregnant. I was still with the same partner that I'd left Australia with, and we'd been together for about 16 years by now. But needless to say, it wasn't really part of the plan.

Now, I know it seems like a weird place to stop this episode, but I'm going to leave it here. Um, that's from the timing as much as anything, but this is part one of a two-part overwhelm and acceptance, and there's more to come. Because when you're diagnosed with an autoimmune disease and it's like, and I know, an entity inside you unknown, when it's going to rear its ugly head. And up until my son was five years old, it really had been quite tame. But I wanted you guys to know about the active and physical life that I had led for about 42 years before round two of the rollercoaster began. Because I wanted you to understand how my life had been and how my job had been so physical, and my passion for the outdoors required so much energy in my physical body.

In part two of overwhelming them and acceptance, you'll see how things can change. And I really want anyone listening who has any autoimmune disease to really respect the fact that this is long. It's a long journey, even if your symptoms are in remission or if you have been diagnosed with relapsing-remitting MS. You would really be advised to treat MS like you're, I think, like recovering alcoholics. That's to say that it's with you for life, and even if it doesn't progress because it's a big part of your life, it's in your genetic makeup but triggered by your lifestyle. And the expression of the genes will come out depending on the lifestyle that you're living and the choices that you're making. And if you don't respect the lifestyle, it can return. But there are also things you can do, things you can do to make your life easier and have fewer symptoms, and we're going to be talking about that in one of the next episodes. We're going to be talking about the choices and your options and we'll start planning a recovery diary. I don't know what else to call it, a remission and overall amazing health diary, which will include things like a movement regime, mental health, finding joy, what else was I going to do? Food and medicine, sleep and breath work, work-life balance, so it's a good one and detoxing your body.

And I guess we will always head back towards that mental health story because MS is a frequent roller coaster and your emotional state can change so radically within a day, contained within a week or an hour. So you need to put into place systems to be mindful of all of that. But two things I do want to discuss more and we'll discuss in part two is my pregnancy and how that played out in my body and something that no one really had ever said to me, how menopause affects MS.

So I think that's calling it a day and I'm going to leave you guys here. Please be conscious yourselves and until we meet again on the Inflammation Superhighway, please, please enjoy the ride.