Living With Migraines: From Control To Creation

What does life look like when frequent migraines sap your energy? How do you find meaning in this context? Host Rachel Katz explores this question with Substack writer Amber Horrox, who shares her journey with chronic illness in her newsletter, Warrior Within. From grappling with the inability to work to overcoming medical skepticism and chronic illness grief, Rachel and Amber cover topics like medical research and trusting personal experiences. Amber's shift in mindset from "control to creation" inspired us to reframe the experience of managing chronic illness and hope that it does the same for you. 

😊 Amber’s links: 

• Warrior Within newsletter: https://warriorwithin.substack.com/
• LinkedIn:https://www.linkedin.com/in/amber-horrox-69a94010/
• Instagram: https://www.instagram.com/amberhorrox/
• Yoga class for writers: https://warriorwithin.substack.com/p/a-yoga-class-for-writers
• Case study: https://warriorwithin.substack.com/p/warrior-unleashed-a-shedding-of-self
• Amber's list of resources: https://warriorwithin.substack.com/p/resources-that-shaped-my-recovery

👁‍🗨 Conference: Migraine World Summit
Learn from the Migraine and Headache Experts - Migraine World Summit

📕 Books:
The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change, Stephen R. Covey. https://www.goodreads.com/en/book/show/36072

Finding Peace with a Devastating Disease: Reflections on Endometriosis: https://www.goodreads.com/en/book/show/57210352

🔥 Rachel's Substack, Inner Workings: https://raekatz.substack.com/

✨ Ladies Illness Library written interviews: https://raekatz.substack.com/s/ladies-illness-library

🎶Music "Upbeat Defiant Challenge Funky Groove" by Uroboros Music, licensed through Audio Jungle

Transcript

Rachel: 

Welcome to the Lady’s Illness Library. This is a collection of stories about unconventional illness journeys, and in particular, those that are riddled with mysterious symptoms that are difficult to diagnose and which often strike us in the prime of life. These types of diseases mostly affect women for reasons we don't really understand yet. And despite the fact that they're all around us now, they still live beneath the surface of our culture. And that's what we're trying to change here. On this podcast, you won't find ten tips on how to get better. We're not seeking quick fixes here. They don't usually work in the context of these illnesses. Instead, we're focused on having honest conversations with really insightful people. We're trying to get a view into the shapes of these journeys and the way we make sense of them as humans. 

I'm Rachel Katz, a once ambitious Silicon Valley CEO turned mother. Personally, I've grappled with a range of health issues, including an autoimmune disease, anxiety, infertility, fatigue, and I guess what I'll call gut stuff, my Substack is called Inner Workings. And this special segment, the Lady’s Illness Library, can be found at raekatz.substack.com. 

Today I'm talking with Amber Horrox, who was debilitated with migraine in 2018. She also lives with chronic fatigue, fibromyalgia, anxiety, and tinnitus, none of which have been diagnosed by a doctor. In our conversation, Amber talks about the moment she woke up to the fact that she was actually disabled and her intense realization that her health matters. These moments sent her on a journey of research and life changes that continues all the way to today. You can read more on her Substack, The Warrior Within, which is linked in the show notes. 

(to Amber) 

In your words, at the highest level, what illness do you have?

Amber:

I lived undiagnosed with migraine disease for 20 years. I told the doctors for that time period, every single time, that migraine was what it was. And by the time I was officially diagnosed, I was chronically ill. And then a few months later, my dad died. And three months after that, I was completely disabled by the illness, unable to work, left without any mortgage insurance, any sick pay, or any immediate family to help. So it was pretty tough.

Rachel:

Pretty tough sounds like a bit of an understatement. Yeah. Yeah. Let's dive into that comment you just made that you're unable to work. I've seen in your work, it was around 2018, right? You were unable to work. And, you know, I think many of us have had to take time off work to deal with illnesses, this type of illness. One thing I loved in your Substack, warrior within, you've written about how it's like, impossible to describe what you do all day, right? When you have this kind of illness and you don't work and, it just feels awful to try and describe it. And I'm curious if you can tell us how you talk about that now.

Amber:

It took me four years to write that blog that you're talking about specifically, four years to be able to answer that question: What do you do all day? And when I look back, I can really see how limited my function had become and how I was really disabled by the illness a lot of the time. And if not completely disabled and laid up bed bound by it, I was debilitated. Back then I physically couldn't express or communicate that to anybody nor the severity or the seriousness of the illness. And, yeah, a lot's changed in the last few years.

Rachel:

And what were your days like during that period?

Amber

I feel like a lot, in my own personal case, I feel like I had what I now see as like an awakening. I feel like I woke up to the seriousness of that illness. The days I was bed bound, I physically couldn't get out of bed, like I was in what I now recognize as very severe and very agonizing pain. But again, I couldn't communicate that to anyone. So the rest of the world thought that I was in bed with a headache. But the reality was I physically could not get out of bed and I would focus a lot on the pain. But really I had probably about 20 to 25 other symptoms as well that were perhaps entirely debilitating on their own, separate to the pain. 

So, yeah, on those days, obviously, I couldn't get up. When I could get up, I was journaling, I was researching the condition, keeping open to making changes, just really little changes without any pressure or stress on myself. Learning to drown out the noise around me, that really helped a lot, drowning out the noise of everyone around me, you know, like what my boyfriend was saying, what my friends thought I should do, what work thought the problem was, and really tuning into my own inner knowing. So there was a lot of that happening around that time. And I look back now and really I was learning to let my body lead the way, which I can see why I got the response at the time. I couldn't understand why no one understood or no one appreciated why I was doing what I was doing. It's only now that I look back, I can see how radical that looks to kind of drown out the noise around, tune into your own and knowing and allow your body to lead the way and allow that kind of guidance to determine your next step forward.

Rachel:

We're going to go back to that theme, but before we do, just so that we have a sense of how big the shift was in your life. What were you doing before? What did your life look like before this period? Because it sounds like it was quite fast paced, and I'm curious to hear you describe it.

Amber:

Oh, yeah. It was 100 miles an hour. Arguably, I would have been described as really successful in my career. I worked hard, played hard. I worked very long hours in a fast paced, target driven, highly pressured, stressful environment. And I partied all weekend. Yeah, I knew no bounds, and I literally didn't stop. You know, I was on the go, go, go, go, go all the time. I was. My plans, like, I had plans, like, up to a year in advance. Like, my life had just got so busy, and so full on, there was no room at all for rest. I was dismissing my illness as much as, you know, the doctors were and just really ignoring it and not voicing that to anyone. And I've even, you know, for all that time, I didn't even share that with any of my friends. What the reality was like for me behind closed doors, when I wasn't able to kind of step out in the world and be what other people saw as highly energetic, like, the most positive person I'd ever met in their lives, that would be the compliments I would get. But really, I was living a life of fatigue, you know, kind of fueled and propped up by caffeine infused energy drinks, coffees all day, drinking all weekend. Yeah, it's a very different life to my life than my life now.

Rachel:

At the very beginning, you said “I would have been described as very successful”. It's a really interesting way to put it, and it really resonates with me. Right? In your mind now, in your heart you wouldn't call that success, but other people would describe it as success. And that's a really hard external perception to let go of. And it sounds like it's been a process of letting go of that for you.

Amber:

It was one of the hardest things, actually, was I didn't recognize it as grief. Now I see in the chronic illness community, it's described as grief. I had no idea that's what I was feeling or experiencing at the time. But one of the hardest things to let go of was that, that life, that lifestyle, that career, that income, you know, my job and everything, it was a really, really, really tough, tough time.

Rachel:

Yeah. And along with that, I mean, you mentioned that your friends and other relationships knew you at this, as this certain type of person. And you've also written about how relationships can be really hard to navigate with chronic illness. This is a theme that comes up over and over again in my conversations, and I'm curious what the hardest part of that was for you. What did those, the kind of breakdown of those relationships look like for you?

Amber:

Gosh, the hardest part of the relationships? Saying no, I think saying no. Yeah, that's come up a few times, because previously I was that person that said yes. I was there for everything. I was at every party, every invite, every time somebody needed me. And when I had to kind of reverse that and flip it all upside down and really prioritized me and my health, that had to change. And that was definitely a different, again, when I look back, that was a different version of me that people were not used to seeing that someone who said no, and I can't, I'm not coming out or I'm not able to make it today. Yeah. That was a different side that people would see of me that they hadn't seen before. I've been really fortunate in some friendships where we've been able to have that conversation and they've been able to express how upset and hurt they've been and give me space to share, actually, this is my lived reality. This is what I've been living with. I've been living with it for a long time. I just didn't used to say anything, and I would always be there, and that's no longer possible.

Rachel:

So the conversation was basically them expressing to you that they've been hurt and upset by your kind of disappearance or decreased engagement. Is that right?

Amber:

On occasions, it didn't all. It hasn't worked like that with every kind of friendship or relationship, but on occasions, yeah, that's and I'm grateful for that because that, you know, as we know, that doesn't happen too often, but it has happened with some of mine.

Rachel:

Yeah. It kind of changes the types of people you're able to be in a relationship with. I had chronic foot pain in my twenties, which is kind of unrelated to all my other things. But people in their twenties don't really understand the notion of something that hurts all the time. And so it is so easy for that fact of the pain to just fly out of everyone else's minds. But obviously, it's always in your mind and that distance between what it seems like you're thinking about or I'm thinking about what seems like the person across me is remembering about my experience was so hard for me. So, so hard for me. And it sounds like you've worked through that with some folks and not with others. 

Just going into your actual illness area, set of diseases. I don't know exactly what to call it. In these cases, but migraine is at the center of it, and then there's a number of other things around it. From reading your work, it sounds like that you have just done an extraordinary amount of research into migraine, particularly, to inform your journey. You've mentioned a few times every doctor telling you it's not migraine or essentially, basically getting no external expert help. And I'm curious, what prompted you to start going down that research journey and then how did that go for you? 

Because what's motivating this question is, in some cases, I have felt very empowered by research, and in other cases, I've just felt like this is not my job. I'm not an expert. I'm not supposed to be having to become an expert in this. So I'm curious what your experience with it was like.

Amber:

Again, it kind of came from the place of, like, where I did find myself in the difficulty in the position that I did and feeling like I did wake up to the severity of the illness. I remember that same week when I realized that I could physically no longer get out of bed and go to work at 02:00 a.m. in the morning. I wrote in my journal, “I matter, my health matters. I know I need to make changes. I know changes are what it is going to take, and it is going to take me a long time.” And I think that really became like a foundation and an anchor for me. I'd read a book called Seven Habits of Highly Effective People by Stephen Covey, and I really feel, I felt very connected to that. 

One of the habits is to start with where you are and work with what you've got. So even in that kind of desolate and desperate place, that is pretty much what I did. I started with where I was and worked with what I had. And at the time, it was really minimal information. So one of the things I'd become aware of was that I was at higher risk of heart disease and strokes and things like that. And I just flipped it and asked myself the question, what can I do to reduce the risk of this happening to me? I also was aware it was an anti-inflammatory disease. And it just felt really obvious to me that it was an anti-inflammatory disease. Right. Okay. What I now need to do is reduce the inflammation in my body. And I started off that way kind of step by step by step by step into the unknown without everything figured out or worked out. And I did, in the first instance, find the research pretty challenging, you know, not so easy to come by. 

But once I got through to The Migraine World Summit annual event, and watched it that year, that kind of changed things for me. And I'd say it was probably more at the point where I broke the chronic pain cycle. That was then, when I then found it fascinating, and I really, really, really became interested in the research and the understanding of what I was living through. Plus, it also felt like I had no other option. I had no other choice, no other way out. I'd been hanging around waiting for someone to come and rescue me for years, you know, like desperately wanting and wishing, you know, doctor, specialist, boyfriend, someone, anyone. I wasn't fussy, you know, to come and just sweep me off my feet and tell me that everything would be okay and that they would take care of me and look after me and pay for all the bills and all the things that I was worrying about the most. And I think when I realized that nobody is coming, I have a 700 pound a month mortgage with no income. I'm now considered disabled. You know, it was big wake up call for me, and I do feel like at that time, I really did take back, it was a very, very, very uncomfortable moment, but I do feel like I took back the reins of creation for my own, my own life, my own health. And that was a game changer in that. Yeah. And I've been fascinated by it ever since. I don't understand why there's such little interest in it. I appreciate it's deeply complex and very misunderstood, but, yeah, I'm, I'm absolutely fascinated in it. I've kept, you know, continuing the research now, and I'm sharing more and more with my readers.

Rachel:

Yeah, it's fascinating that you describe this specific moment. It sounds like when you had this realization that you matter, that your health matters. That's not the experience I had. It wasn't a specific moment, but it's kind of an overtime thing. But I've heard this from other people, too, you know, a moment of realizing it, you know, I was sitting on the couch, and I realized it was 02:00 a.m. And I realized that my health mattered. And I'm curious why you didn't believe. You think you didn't believe that initially. Why don't we believe that already?

Amber:

Gosh, that's a good question, isn't it? I can't answer on behalf of everyone else, but I know for me personally, I treat myself like I didn't matter. You know, like I lived my life like I didn't matter. Like it was. I don't know, like I was disposable or something. You know, like, I just. I don't know why we don't believe that, because I do believe that when we do, you know, we approach our life, our health, our wants, our wishes, our desires, you know, our vision for the future in a very different way. But, yeah, I don't know why we, why don't we treat ourselves like we matter, because we really do matter. My belief is I matter. You matter. The world matters.

Rachel:

So through all this, you have transitioned your career toward helping other folks who are on these similar journeys. You know, it sounds like from your story, and this is very familiar to me, too, it was only after you felt you started feeling a little better, then you were able to do more research, then that helped you feel better. And it sounds like somewhere in that process that you also wanted to start sharing this with other folks. At what point in your journey were you able to do more than dig yourself out, essentially, and work on treating yourself in a way that would promote your health? When did that happen for you?

Amber:

Straight away from that kind of, like, disabled state. So one of the changes I made straight away were things I couldn't do, like drink alcohol and drink caffeine. I physically couldn't do either. So I decided from, from that kind of bed bound state. Right. That's it. You know, like, no more drinking alcohol, no more drinking caffeine. It really was a feeling. I talk about it a lot, like, feeling my way forward. Like baby steps. Really teeny, tiny baby steps. I'd heard about going gluten free, for example. When I asked my neurologist, he actually said I wouldn't bother, but that change within had already happened. So I went away, and I just started checking out items in the, you know, in the supermarket, looking for things that were gluten free, that were, you know, more natural products. Hadn't made any big decisions by that point. I didn't go all in. I just became curious about what was available and what things would look like, you know, my shopping trolley, and started chucking in just the odd item. I didn't necessarily cut gluten out as such. But I just started adding in items that didn't have gluten in it, just as an example and just to really highlight how I, you know, it was actually July, August, September. It was actually about three months following that process before I then made the decision where I'd done some more research. And I did find out that the number one thing to cut out was gluten and sugar to reduce inflammation in your body. So it took me about three months to actually take that full step and reduce the gluten in my, you know, in my diet and in my shopping trolley. And I found with that, you know, easing myself into it gently and really, really going at a snail's pace. You know, it's create, to me, it's created longer lasting change. You know, it's made it more sustainable and more practical and easier to practice in day to day life, if that makes sense.

Rachel:

Absolutely. You became bed bound, you're starting to take these baby steps, and then at some point you decide you, you can't live in this expensive apartment in the middle of the city or you don't want to tell me about that.

Amber:

Yeah, kind of. I made it through the first, like, year and a half. I don't know how, but I did. And things were actually looking a lot better, not just health wise, but, like, financially with my work. Like, I was just starting to get somewhere because my health has always been my priority and then work and then the pandemic came along and swiped away my income for a second time. So that was when I really had to sit with, okay, what is it that I really want? What do I want to do? Where do I want to be? And I had kind of started wanting to venture back home to Yorkshire to be nearer friends and family. And, yeah, I pretty much decided that I was going to sell my apartment and live mortgage free, and that's what I did. 

But again, a slower process because I sold my apartment, I moved into a rented room in someone else's house just to give me that breathing space. And thank goodness I did, because I had a massive relapse in the middle of all that. And of course, we had everything going on globally, so, you know, the uncertainty was, you know, that's all there really was at that time. So creating that space for myself and having a bit of an in between stopgap until I kind of, like, figured things out really helped.

Rachel:

Yeah, I'm definitely hearing that theme come up over and over with the slow change, the one step at a time change, and not the full overhaul, which is extremely counterculture, as you've mentioned, radical, I think, is the words you used. Even having kind of sat in these themes for a while now and talked to a lot of people, I still find myself wanting to overhaul this or overhaul that. And to your point, it rarely takes. The things that take are the, the slower and more incremental changes, which is just really hard to square with the way we do basically everything else. Right, where you take an action and you hustle and then, and then you get the result and then you go hustle on the, on the next thing. And so, yeah, when, when you say something like it was a year, year and a half, four years, et cetera, to me, that sounds like, yeah, that makes sense. But I think to, to a previous me, might have sounded like, what? Four years?

Amber:

It's a hard lesson to learn. It's a painful one, isn't it? But it's one that I've had to learn myself. And when I shared on my socials, I don't know if it was like two years ago now, that slowing down was actually up there with one of the greatest challenges of my journey. I felt physically, I was physically, I felt physically sick sharing that with my audience. I had no idea at that time that that was really common and an actual, you know, a genuine struggle amongst many of us.

Rachel:

You know, I still feel a lot of shame talking about how much sleep I need or, and, you know, I'm in a very comparatively able place, and I write about it all the time publicly, and I talk about it all the time, and I still feel that kind of just immediate kind of spark of shame talking about it. Even still, that may never go away for me because it's so deeply ingrained in my worldview based on the culture that I've lived in. 

One topic, I'm really interested to hear your take on. You use the word “warrior” in your Substack, and you talk a lot about personal agency. You took agency and it made all the difference, I can tell. And for you, me, you know, I certainly have taken agency and made changes that really made an impact in some ways, and then in other ways, not so much. And I think I've really struggled with this idea of personal agency because if I go into something believing I can control the outcome and turns out I can't control everything and it doesn't work, I can really end up beating myself up if I'm trying to do things and they're not having the effect that I want. So I'm curious how you think about that tension again.

Amber:

I'm only just starting to kind of piece, piece, you know, put the pieces of the jigsaw puzzle together, if you like. But I think from early on, I can really see that I had a big focus on creation and not control, which is something that I see is. I can't think of how to describe it, but it's. It's something that's been starting to stand out to me more and more and more. And I think, yeah, I think I have looked at it from an angle of creation and not control, and that has helped and made a big difference. And also around drowning out the noise of everyone around me and tuning into my own inner knowing has really helped tremendously. That's helped a lot with all the conflicting information out there because, you know, you could read one thing about diet, and there's 500 other things for and against. So, yeah, that's definitely helped me, is looking at it from an element of creation and not control and tuning into my, deeply tuning into my own kind of inner knowing and inner wisdom. And what my body's trying to tell me, you know, like, what is my body trying to tell me? What, when I ask my body what it needs, what does it respond with? How can I respond to that rather than what everyone else is saying or what I think I should be doing?

Rachel:

Yeah. Yeah. That's a skill that not many of us have really practiced much. This phrase, creation, not control, is interesting. I'm curious if you can give me kind of a concrete example of a challenge and then how it might be approached from a control perspective and how you would approach it from more of a creation perspective.

Amber:

So back in 2018, when it really felt like one day, and like I say, it was very, very, very uncomfortable, I actually physically remember the day being sat in my apartment on my sofa, and I really sat with, you know, if I've kind of, you know, I found myself in a situation with no mortgage insurance, no sick pay, and an illness that I'd known that I'd had for 20 years that I didn't do anything about purely because I couldn't get anyone outside of myself to listen to me or validate my own experience. So I kind of sat with the deeply uncomfortable prospect of an insight of, like, if I've created this situation, which was very uncomfortable to sit with, I have to say, then surely I can create my way out of it. And that was the empowering bit for me. 

The discomfort was horrible. You know, that was really, really tough to sit with that. But the prospect of being able to create my way out of it, gave me hope, gave me light, gave me something to work with, something to work towards. And I know in the medical field, we talk a lot about managing our illness, controlling our illness, the fact that it is considered incurable and that there is no cure. Again, I feel like I've approached it from the creation side of things like the creating health and wellness. But even when I did that, I had no idea where this journey was going to take me. I had no idea what was possible. I definitely didn't see myself living the life that I live now with the energy that I have now and, you know, the wellness and the vibrancy that I enjoy today. But I still, yeah, I still set off on that journey anyway, like, with a big bag of hope and, you know, just the prospect of some wellness, any wellness, anything, I'll do, you know, anything was preferable to where I was at that time, no matter how, you know, no matter how incremental or small the improvement was.

Rachel:

Yeah, this notion of, you know, I created this situation is definitely intense. I've done a lot of thinking about this because I had a similarly big and fast career before. And, yeah, I've grappled a lot with questions of regret. Do I regret doing that? Depending on the day. Right. It's a different answer for me, and it sounds like for you, it's been a journey of naming that you, you feel like you did cause it and, and then, but that also, you have some agency to come out of it. Is that a, is that a good way to summarize what you're saying?

Amber:

It's a tough one, isn't it? Because the, you know, like, we live in a blame culture, and a lot of us feel responsible for our illness, but in a way that we're blaming ourselves from it. And I've had to work with that in other ways, you know, blaming myself for not doing this or that or enough of this or I should have done that or more of that. I have kind of beat myself up internally in that way. But when it comes to the illness, how can I describe it? Because I feel it was more about taking radical ownership for my life, for my health, for my body, rather, and creation, you know, taking back the reins of creation for it, rather than saying, this is my fault, it's my problem, you know, I've done this to myself. To me, there is a clear, you know, there is quite a difference.

Rachel:

Yeah. It's certainly a different vibe, if nothing else. Yeah. I mean, I also, after doing my own set of reading and learning. I really liked the idea that, sure, we can make decisions, but we're also making decisions within a context. And that context can really make it difficult to make certain types of decisions that might help our health, and it can make it very easy to make decisions that can hurt our health. And that resonates with me because it kind of balances yes, I did make those decisions. I do take ownership of that. And, you know, the world around me didn't make it particularly easy to, to make a different decision. And. And so that's true, too. And. And I kind of like that balance.

Amber:

Yeah, absolutely. Yeah. And I love that word balance as well. A balanced approach and a balanced way of looking at things, because, you know, a big part of the illness was living with migraine hangover. I drank for 20 years. You know, every single weekend, I would spend, spend every Saturday or Sunday in bed with very severe pain, puking six to twelve times every single weekend for 20 years. And if I had my life over, of course I'd do things differently. I wouldn't make those same choices. But I can also appreciate that that's the life I lived. I chose to live that life. And in many respects, that's the kind of path we're guided along as well. The work hard, play hard, the success, the career, the home, the job, you know, the car, the money. So I can also have compassion for myself at the same time.

Rachel:

Yeah. Yeah. In terms of migraine, you know, I don't focus these conversations on learning how, you know, tips and tricks and ten best ways to, you know, blah, blah, blah, because I think that's kind of the problem with the Internet coverage of these, these things. And I'm so glad there are more writers like you and like many of the other folks that I've talked to who are covering it in a different way. But that said, for listeners who do have migraines, it is also often very helpful and nice to hear some of the learnings that are very hard won through your journey. So I'm curious if there's anything that you learned about migraine as a disease or that you did to get through these episodes that really rises to the top as kind of like one of the big ones for you.

Amber:

Yeah, I'm gonna have to say, learning to let the body lead the way.

Rachel:

Yeah. And what does that look like? Kind of like on a Tuesday. Right. So you're gonna have lunch. What is your body leading the way look like in that moment?

Amber:

So checking in with your body. So checking how it feels to be in your body and asking yourself the question, you know, like, “How does it feel to be in my body today? What can I do to support how I feel?” Because that might mean going out for lunch with a friend and having that catch up and that connection and feeling invigorated afterwards. But the next day, that might mean, like, actually, do you know what? My body needs rest today. Like, today is going to be a bed day or a PJ day. So, yeah, that is one of the ways my body, speaking from personal experience, kind of back at that time in that place, my body was screaming at me. That stress was killing me. You know, I had felt in my life like it was caving in at all angles. Like I'd, you know, had an unwanted, unexpected breakup with a partner. My dad announced he had an aggressive form of cancer. I moved to a new place where I didn't know anybody. Work problems ensued. I was heartbroken. I was depressed. You know, the migraine attacks took off on a whole other level to an extent that I could no longer conceal them or keep them to myself on a weekend, for example. And, yeah, that whole time, you know, like, I knew that my body, I needed change, needed to happen, and I knew that stress was killing me, but I kept ignoring it. I kept drowning out the noise of what my body was trying to tell me and continuing on as I was. 

There is a second, though, with the migraine, because this has been mentioned a couple for the last two years with The World Migraine Summit, that change is difficult. You know, change is difficult to make, and particularly if we're working and we've got our family and other responsibilities. For my part, I do see what happened to me as a gift now because it freed up and opened up that space for me to research, for me to connect with my body, for me to make the changes. But I appreciate not everyone's in that position. And yeah, what's been mentioned at the Migraine World Summit the last couple of years is that even through research alone, so even through research of your lived disease or condition alone, without making any changes, you can expect to see a reduction of 50% in terms of, like, attacks. And there are a lot of people who are, like, testifying to that as well now. So, you know, even research is a standalone thing. 

A lot of what I've learned from The Migraine World Summit really helped me understand, you know, like, what I was living with, I had no idea. So when they were talking about, say again, just one example of the four different stages of attack, I wouldn't realize that for one, you know, an entire 24 hours to 48 hours before the pain was triggered, that I was already in attack. So just understanding that, for me, was that, you know, things like that was an absolute game changer. Understanding symptoms and severity in a way that I could then communicate to others so that they, you know, they could at least hear me or at least grasp what I was trying to say was a game changer. I mean, that changed everything for me that year where I learned to be able to do that. And that in itself was deeply healing without even necessarily making any of a change. It's just actually being able to speak up for myself and say, you know, this is what I live with, and this is what's part of it.

Rachel:

Having the language to state what you're feeling in a way that actually feels like it represents what you're feeling is in itself an achievement because of how indescribable these experiences are. I've heard a number of times throughout the conversation, and it sounds like you've had this experience where, looking back, you realize how bad it was, and maybe in the moment, you didn't even realize. So even in the moment, you couldn't even kind of tell yourself how bad it was, let alone communicate to someone else. And I think that's really common, especially when there's fatigue involved. Man, it is hard to describe what fatigue is in a culture that, you know, loves being tired. Everyone's always tired. And, yeah, fatigue is very, very difficult to talk about. You've read a lot, obviously, and a lot of it has been scientific research. Sounds like you've done this event, The Migraine World Summit, for a few years. I'm curious if there's any authors or writers, whether they're more informative or more literary, that really stand out to you, either your approach to migraine or how you see yourself as a chronically ill person.

Amber:

Amy Corfeli, although it's not migraine disease specifically, and she lives with endometriosis, I've recently read her book, Finding Peace with a Devastating Disease I believe is her book. That was an absolutely brilliant read. How that woman wrote that book from such a profound place of peace all the way through her journey, because much of it was undiagnosed. So she was, you know, kind of living as debilitated by a health condition as she was without actually even knowing what it was. So she hadn't even received the privilege of a diagnosis while she wrote the majority of that book. So. And I haven't listened to her podcast yet. I've only just read the book, but I know she has runs a really successful podcast as well. So, yeah, I would recommend, I would recommend her book and her podcast for not just people living with Endo, but also chronic illness.

Rachel:

That's a good one. I'll check it out. One of the interesting parts about these illnesses is just they really shift our perspective of what's possible in our lives. It sounds like, in your case, initially, really narrowing that lens, and then actually it sounds like   expanding it in a different direction. Basically, given all these experiences, how do you think about the future?

Amber:

Yeah, that's a great question. How I think about the future is very, very different. You know, kind of this year and last year versus the first four years. So the first four years, I mean, my only goal was wellness. I had no idea, like, what was possible. I just believed in something and was given a lot. You know, I felt a lot of hope hurt by that. So I went for it. And then two years ago, I set myself the vision. The more I kind of researched and the more I read and the more I understood and the more cycles I broke, you know, like the chronic pain cycle, the chronic fatigue cycle, but, you know, the drinking cycle and all the different addictions that I didn't kind of realize I was living with them, but I went on to break those as well. Kind of cemented a new belief that I, well, about a year into my journey, I did realize that I was like, all right, I'm on a healing journey here, and I can heal myself. 

So the more into my journey I got, kind of the weller I became, the more, you know, I've probably read over 100 books, you know, continue reading and researching and will probably be a lifelong learner in that respect. The more I can believe in myself, the more I believe I can heal myself further. So two years ago, my vision became full health and vibrant energy, and that's the vision that I'm working for. And on a personal level, on a community level, I really felt like at the time, back in 2018, finding myself disabled by the illness, I really felt cast aside by society, as if kind of slung on to a scrap heap with all the other chronic illness warriors. Join hands with one another and really support one another and lift one another up. I believe that's possible.

Rachel:

Me too. And that's why we're here. And I'm really glad to have you because my previous work was so cutthroat. I was very used to a world where basically there's a winner and a loser in any kind of transaction or any kind of, really, engagement. And what I love about this community is the more we all talk to each other and write and interview each other and collaborate, you know, the better off we all are. And so it's just been a pleasure to talk to you today. Is there anything else you'd want to add that you want to make sure our listeners hear?

Amber:

I mean, I'd love if any listeners either kind of want to reach out or connect with me or contact me, then, you know, be. Yeah, I'd love that.

Rachel:

Great. And what's the best way to do that?

Amber:

My Substack page, The Warrior Within. I've got my, like, the email DM set up on there. Yeah, that's the main page I'm on. I'm also on LinkedIn and Instagram just under my full name, Amber Horrox.

Rachel:

Great. And we'll also put those in the notes. I will definitely be thinking about Amber's phrase “creation, not control”. I think for me, moving away from control doesn't come easily. I'm a chronic to-do list maker and someone who likes setting a plan and checking it off, which has made it hard to have a chronic illness. And I think this is a pretty common experience for people like me. But maybe replacing it with the word creation can help because it still allows for action. But it suggests that instead of being quick and clear, the process might be iterative and unexpected and maybe even beautiful. You can find more on my substack Inner Workings at raekatz.substack.com. That's raekatz.substack.substack.com. Amber's newsletter and additional recommended resources are also linked in the show notes. Thanks, and we'll see you next time.