140: How I Recovered from MCTD (Lupus & more) with Amy-Louisa

00:00:09 Chazmith: Welcome to Our Power Is Within podcast. I'm your host, Chazmith, and my mission for this podcast is to inspire you to take your power back and realize that you are the healer that you have been looking for all along. We are all capable of healing in mind, in body, and in soul.

00:00:26 Chazmith: And before I introduce today's guest, I was excited to share with you that this episode is brought to you by CFS School, founded by Jen Mann and Karden Rabin. If you're not familiar with Jen and Karden, check out recent episode 119 where I pick their brains, hear about their personal healing journeys, and discover how CFS Schools birthed. So CFS School, for those of you who aren't familiar yet, is a nervous system healing program including an integrative brain retraining approach, polyvagal therapeutics trauma resolution techniques such as somatic, experiencing tools, inner child work, and parts work. It's designed to help guide support empower you on your self healing journey to heal from a variety of mind body disorders. And some of these disorders include CFS, Fibromyalgia, POTS, Autoimmune Disorder, sensitivities and more.

00:01:14 Chazmith: There is a wonderful self study option that is perfect for people who love to go at their own pace. While the program is set up in twelve modules, I personally found it super supportive for me to spend more time on certain weeks and modules where I really wanted the extra practice. However, if you're someone who likes the guidance and the additional live support, you can also sign up for a free discovery call and be ready to sign up for the next live cohorts. Links in the show notes.

00:01:45 Chazmith: And speaking of CFS School, our guest today is actually here to share her healing testimonial and she is a CFS School graduate. This is the first time I have ever had anyone on the podcast to share how they healed from lupus. Of course, she has a list of other things that she's healed from as well, which we will hear from her. But the coolest part is that even her blood work shows that she is in remission and she got a very special handwritten, I believe. Well, I'm not sure if it's handwritten. But she got a very special note from her doctor to also show that she is in remission. I am blown away by how well-spoken Amy is and how her story unfolds. She is a beautiful and inspiring woman. And I cannot wait for you to hear her story. I hope you find it as helpful. And supportive as I did. I feel that it came to me. In divine timing, so please enjoy. Amy, thank you so much for being here with me today.

00:02:56 Amy: Thank you for having me. I'm glad to be here.

00:02:59 Chazmith: I'm really excited. This is going to be a fun story. I'm excited to dig in and just hear more in depth about your experience that you've been having lately, because you are officially the first person to ever come on the podcast and talk about recovering from lupus. So this is going to be very new for me and my audience.

00:03:17 Amy: Oh, I'm so pleased. The lupus community is really close to my heart, as you can imagine. So, it's a joy to represent what's possible with their stories.

00:03:30 Chazmith: Now, so we know that you're recovered from lupus, and you're going to get all into that. We're going to talk about all the details and how this happened. But is there anything else that you were also recovered from along with lupus? Were you having any other kind of diagnoses or symptom display that you've now also recovered from or continuing to recover from?

00:03:51 Amy: I mean, any person with a chronic autoimmune disease will just tell you it's never neat and boxed. There's always quite a lot going on at once. So, yes, I had all the classic symptoms of lupus, but I also was diagnosed with osteoporosis and rheumatoid arthritis and Raynaud's disease and just like, issues. So gut issues, nausea, really bad headaches. Just constant chronic headaches. So just a lot of things all of the time. Chronic fatigue was definitely a big part of that, too. I think that's quite common.

00:04:33 Chazmith: When did this begin? When was the onset of all of this?

00:04:38 Amy: I was 17 when I started feeling symptoms. I remember just waking up and my back would feel really stiff in the morning and it would take me awhile to suddenly get out of bed, and then it would smooth out throughout the day and I'd feel fine by the evening, and then it would happen again the next day. And every day the pain was in a different place. So it was all very random, but bits and bobs like that were going on for about a year before I got fully diagnosed, when I was 18. And that was because I just had a gigantic flare. It all kicked off in one go in quite an extreme way. I was hospitalized, and then in that month at hospital, they did enough tests to diagnose me.

00:05:22 Chazmith: Wow. Okay. How old are you now?

00:05:24 Amy: I'm 35, nearly 36.

00:05:27 Chazmith: That's a long time to feel not well. So today you consider yourself recovered?

00:05:36 Amy: I do.

00:05:37 Chazmith: You are feeling a lot better.

00:05:38 Amy: Oh, my gosh. I mean, I never thought that I could say this, and it genuinely surprises me every time I hear it come out of my mouth, but I have a normal life. I've been really sick. I was someone who had a tinge of something going on in the background. But I could still work and have a family and run a very normal life. I was very, very sick. And the doctors said at times that was the worst case that they'd ever seen of this type of illness. I fought for my life multiple times. Where the doctors were very sure she's not going to live this week and just be with her to my family and that sort of thing. So, yeah, I've really, really been ill. And now I can say I'm not at all. I am what I have been excited to experience, which is just a normal person.

00:06:30 Chazmith: Are you still recovering from anything? Do you still ever get any kind of symptoms day to day or are you just mostly at a place where you truly feel mostly symptom free?

00:06:41 Amy: So the only thing that I experience on and off is that I get Raynaud's in my hands and feet. It's not as bad as it used to be. And I can see it improving all the time, but often when you... I know we're going to get into it as we go on, but when you recalibrate the way that your body responds to itself. There can be a few little straggly things that just hang along at the end and they take a little while to get through. I know that I've heard that happen to other people and my hands and feet seem to be the thing that it is for me, so there's that. And yeah, I think it's more that if I feel any symptom coming along or if I feel that my body doesn't quite feel safe or it's not quite right and it's wanting to express itself somehow, I just meet it before it turns into any symptom, if that makes sense.

00:07:46 Chazmith: It does.

00:07:48 Amy: So, in that way, I can say since I've recovered, I've not experienced anything of what I used to. But I also just feel prepared that if ever I did in any way, I would know what to do. And it would never be like it was before, when I was completely uneducated or unsupported and my body would just go into chaos and it was helpless. It's nowhere near that anymore.

00:08:13 Chazmith: And I know from following you on social media you've recently had some multiple blood work done that actually shows that you have no signs of the autoimmune in your blood anymore.

00:08:24 Amy: Yeah, I feel very blessed to say that I have a really wonderful doctor who has been completely along my side as I've gone through this alternative healing route than what our western medicine is in England. And he's been really supportive and just really in awe and tried to learn about everything that's going on. And normally they wouldn't write you letters after you've had blood work done, it just goes on your file and they bring it up next time you have an appointment. But because he knows how hard I've been working and the journey I've been on, he just wrote me a letter. And said, I really think you should know that and just be really reassured that you're now in clinical remission, which he's never said to me before. I've had ups and downs in the last 18 years, but never has the language gone anywhere near that. And so I think it was a really big moment for both of us.

00:09:27 Chazmith: That's so exciting. That's really awesome that you had a doctor that you found super supportive, that was somebody that you could go to through the whole experience and that also really encouraged and supported you with alternative healing because that is sometimes rare, but can be so beneficial.

00:09:44 Amy: Oh, I don't think I appreciated how rare it was until my community of autoimmune friends just grew and I just saw how difficult it was for them to practice any type of self-care that wasn't prescribed by something that came in a bottle. And yeah, I feel really, really blessed. He's really been open to learning as well along the way. So as I've learned things and how to look after my body, he would make me recite all the practices and we would practice in his office so that he could get used to it and learn how it works. Because he said there's no point in being a doctor if he can't continuously learn in order to help people. And that included from his patients who are probably the people who experience the absolute intricacies of it all and know firsthand valuable information. So he's been a real asset.

00:10:46 Chazmith: Wow, that's really special because that is definitely rare. Oh my goodness. And now you said you mentioned something about unless people are just going to follow the prescribed, which is usually a pill in a bottle, and I know that we were talking offline and you were actually sharing with me something really exciting about prescriptions and you're not taking them.

00:11:07 Amy: Yeah, I'm not taking them. See, I haven't thought about them in so long that I didn't know what you meant. I started doing this course, which I'm sure we'll talk about later, but I started earlier last year and I just started feeling well so rapidly, and I felt a great confidence to know what to do with my medication. I talked to my doctor about it. A little background, I've been on strong, strong immunosuppressants for all of those 18 years, and on top of them I'd had Prednisolone, which is a type of steroid, at quite a high dose. And anytime I tried to lower that dose, it was just awful. So now I'm actually equipped and know how to walk myself through this process. And I did it with all the wisdom and understanding I had. And within no time at all, I was on nothing and I was completely well.

00:12:10 Amy: And I've sustained that. It's been about a year now, and my whole body's changed because I guess... as you can imagine as many people listening, probably, once you get these strong medications in your system and they help run your natural cycles for such a long time, your body has a chance to learn. Okay, how does it work on its own now? And what's that going to look and feel like and I've just felt the best version of myself for it. It's been incredible.

00:12:42 Chazmith: That's amazing. That is a huge win. Congratulations.

00:12:46 Amy: Thank you.

00:12:47 Chazmith: Wow. So speaking of this program that you started a little over a year ago that was going to actually be my next question is I don't really like spending a ton of time getting into all the things that didn't work. Because we all have those stories of the surgeries or medicines or these different protocols and stuff we do and they don't work. But let's talk about what did, what was the catalyst? Where did you begin to really experience true healing and how?

00:13:12 Amy: So I started on social media and just following people who were inspiring to me and there was a lot of talk about regulating your nervous system. I honestly wouldn't have said that I was a Dysregulated person. I think that was even news to me because I'm quite a stable person. I'm quite logical, I think everything through very thoroughly. I feel at peace and at ease with myself. So to suddenly try and get my head around, okay, could I possibly be in some sort of chronic Dysregulation? Is that a thing? And to start learning about it was. really brand new to me and changing the way that I see myself. And honestly, I must have searched for anything to do with nervous system Dysregulation. And these two accounts came up, which was Jen and Chadin who run a school for this very thing which is called CFS.

00:14:15 Amy: And I just felt really like a good vibe with them. I connected with the way that they spoke. I was feeling impacted and inspired by the few things that I read that they have written about. And amazingly they had some classes opening not long after that. So I messaged Jen and spoke with her and it was maybe a month or two later and I was on the course. It was a three month course and I can honestly say that probably from a month in, I knew that my life had changed. It was that quick. It was incredible.

00:14:54 Chazmith: Wow. So what were some of the tools within the program that really supported you? Because I know that they have a really diverse program that utilizes brain retraining and there's parts work and somatic experiencing was it all of it for you or were there certain tools that really felt supportive?

00:15:15 Amy: Yeah, there was a few that were really impacting at the time. I could honestly say the worst symptom that I was going through was chronic fatigue. I was just really, really heavily tired all of the time. So when I would first talk to Jen about some of my symptoms, she would ask me, what do you think could have happened before that? What triggers were you experiencing at the time? And I was honestly, nothing. My health is completely random. It flares or it doesn't flare very randomly and she just said to me it's not random but you just won't have learnt yet how to see.

00:15:55 Amy: So I think awareness was probably the first big impacting skill. And I really believed that I was a very self aware person but learning how to be aware of your body and not your mind or your history or your narrative or the things you're believing at the time, but really the stories that my body was carrying, that was a really, really big skill. Because I learned I'm so communicative, I'm so logical, that I'd neglected this whole story that was happening in my body.

00:16:35 Amy: And my body was trying to tell. I was reframing it as something else and trying to work with my mind. To get through it, and it just wasn't work. So there was a lot of just somatic practices where I learned how to resist that coping mechanism for me to overthink things and just move through what I was feeling, what I was going. Through in a bodily way. I had instant success. My body was just crying out to be listened to and ready to be listened to and the second that I did it, my body was taking a big sigh of relief that she's being heard for the first time properly.

00:17:14 Amy: So that started me off on a really good path and then I probably had some really big breakthrough moments with inner child work. Again, my adult mind was not fully perceiving what my inner child was still carrying and just learning how to intuitively. Follow where your body is leading you to and listen to what she wants to say and that sometimes your inner child will just still be suffering with some very simple things. Not overcomplicated, but just these simple core. Issues that found a thousand ways to manifest in my life and thoughts.

00:18:05 Amy: And I was learning how to just set all the complicated parts aside and just get down to the simple few things that my body needed and wanted and would feel safe with. And then of course, learning how to actually give that, how to state change, how to take myself from a place of stress or fear or lovelessness and take myself into the state that I actually really needed. And then finally, I would just say it was the fact that I had come to understand I had power. For anyone who has a very debilitating chronic illness, you probably know what I'm talking about when I say it feels very powerless because all this stuff is happening to you and you just have to cope with it and get through. It and hope that a better day will come and really that's it.

00:19:11 Amy: I found it to be a very disempowering season because then it would be like I couldn't work or fully live the life that I was desiring and the practices I did at the beginning it just took me to a place of dignity. I felt very much like, oh, I'm actually a very important person in this story and I can respond to myself with wisdom and with intention and that can mean something, that can create something. I have the power to create a new state, a new reality inside of my body. Instead of the one that's just been sat there dormant for so many years and I felt so safe once I'd recognized that because I thought, okay, you're equipped now, you can always do something.

00:20:04 Amy: And it really just changed the way that I related with my body. I grew to be very, very kind and compassionate towards my body and even my body's reactions and symptoms. I learned how to approach them with an embrace and a kindness that didn't just let it happen. It wasn't self pity and sitting in a dark room for hours crying and saying that was compassion it was just understanding where it all came from, but knowing that I'm the one to lead her into a better place. And the combination of all those things was enough. Everything that they taught were powerful, and I use all of the tools whenever I feel I need to, but yeah, those for me were real things that shifted me.

00:20:56 Chazmith: Wow, that's amazing. So you said that you would have at one point thought, oh no, all my symptoms and my flares and everything is totally random and Jen said, no, they're not random. You're not aware yet. With this new awareness, this really deep awareness that you've been really developing over the past year, when you look back now, can you see where the illness came from? Does it make more sense, everything in your body, or is it still confusing?

00:21:29 Amy: No, it makes perfect sense, and I think I was aware of that for a long time. Sometimes we can see these connections. The timing was very suspicious. I had a difficult two years leading up to when my body suddenly went into a big crash and everything changed. But as I got married to my now husband and we started building a family of our own. I could reflect back on how I was raised and the environment that I was in as a child. And I have really loving, beautiful parents. Who just didn't have all the tools to be everything I needed. They had come from difficult homes and they did their absolute best, and I love them and respect them and thank them for that, but there was just so much missing, and as children, we don't know how to work those through in our mind. We just internalize all the lack as it's my fault somehow. So it wasn't like I had this big dramatic childhood, it was just that I didn't ever believe that I was quite enough and that I needed to somehow get to the place where I was enough, but I didn't know how. And I never felt it. I never felt enough.

00:22:54 Amy: And so I knew that there was a link. What CFS course taught me was how to actually take that understanding and change it and actually manipulate the memories or work into it what you wish would have happened, or even just visualizing yourself without carrying that heavy burden of all those horrid inner beliefs anymore. And by actually doing something about it. I started to feel that my subconscious lack of worth was less of a gray cloud in my life. It suddenly started to become a tiny little breeze that would come every now and then, and then it would just clear altogether. So, yeah, even when I meet people. Now with chronic illness, I don't tell them, but I'm subconsciously searching for where their stress is originating. What are you deeply believing about yourself that actually is so painful to think about that your body is expressing that unmet tension deep down and so continuously.

00:24:09 Amy: That it can't contain that pressure anymore. And it's turned into whatever your symptom is. And anyone that I've had the privilege of talking deeply about their story, it's been the same. Everyone has this core belief that's not helping them, that's not supporting them, or is not peaceful in itself. And just the body can't handle that over a long period of time. It doesn't want to, and it shouldn't have to. And the joy of being an adult now is that we can learn these. Things and we don't have to be reactionary anymore. And we can see elements that we're not privileged enough to understand as children. But as adults, we can form a path for ourselves to a different way of thinking or a different state of believing.

00:25:01 Chazmith: Do you see when you talk to people a theme as far as what what core belief usually is?

00:25:07 Amy: Yeah. I'm a great believer in just unconditional love being the powerhouse behind every being on Earth, even my dog. It's any lack in... just true love can really be harmful for people feeling equipped to be alive in this world now. We need it. And what's difficult is that sometimes we have it and mistakes happen and people aren't perfect, not even our parents or caregivers. There can be moments that interrupt the narrative that you are loved.

00:25:49 Amy: I see it in my son sometimes. He's so adored in our family. He's so very adored, but he really feels it if for five minutes he doesn't fully know that you love and adore him. And sometimes we have to stop whatever tension is rising in the house or whatever problem we're working through and just forget it all and just remind him we're going through this thing it feels uncomfortable, but we love you and you're safe in that love. And I think that it's easy for children, even when they are loved, to interpret things in other ways. So I just think that constant bringing in the reminders of love and then seeking to show it in every way you can is just really basically all we need. And when we don't get that, our hearts suffer.

00:26:46 Chazmith: Yeah. We start to interpret it as we're not good enough, we're not worthy. Then we have to try harder. Then we put more pressure on ourself. Then we need to be the achiever, the perfectionist or the people, pleaser. Just because that's what as a child, we interpret as the way that we're going to get that love we crave

00:27:01 Amy:exactly that. And when I got sick, first of all, with Lupus, I was pretty much. Bed bound for three years after that. And my whole life came to a complete halt. And for me, that was my way of escaping. It was my body's way of escaping that trying. I'd been trying my whole childhood to be enough. And suddenly it was this free, get out of jail free Chad of you get to just be nothing now and lie in bed and be a blob.

00:27:37 Amy: And it felt like freedom. At the time, I remember people saying to me, you're handling this really well. And I understand now that it was because in some way it was my body trying to get what it needed, which was just that someone cared for it and that I wasn't responsible, I could let go of this big burden and pressure to be enough. And even in my recovery, that was something I had to relearn. I had to relearn you are safe when you're trying, when you're achieving something, when you're capable, because--

00:28:20 Chazmith: Because it learned before that that wasn't safe.

00:28:24 Amy: Exactly.

00:28:25 Chazmith: What are some of the ways that you have helped develop that feeling of safety again, in those behaviors, in trying, in achieving? Because, like a light bulb just went off in my mind when you said that.

00:28:37 Amy: So probably the most effective tool that I use is future practice. So if I'm thinking about some way that I want to grow or I'm going to do something new for instance I got a job recently. First time I've had a job in. A really long time. It's a really small job. I only do it two days a week, but my body just wanted to go into a big panic about it. This was last September. And I would do future practicing where the night before I was about to walk into my place of work. I would imagine myself with my true most authentic, glowing, goddess version of whoever I am. I would imagine a future version of me who was just like a badass. Like, she was strong and tall and wise and confident and resilient.

00:29:39 Amy: And I would just, like, watch the way she walked and the way she stood and I would start to feel it already. But then I would see my true, glowing, majestic, divine, quirky self to one side. I would see this powerhouse woman to the other side. And I would visualize me walking through the gates. I would visualize walking towards the door. I'd visualize walking in and saying hello. And I was confident and I believed in myself and I had joy, and there was an ease to my words and to my activity, and my body was just doing what it was made to do, which was thrive.

00:30:21 Amy: And I would do a visualization like that where I would just imagine the day and the whole time that's how I felt. And it probably would only go on for about ten minutes. And then the next day, when I started living out that reality, I was there. I felt these supportive presences around me. I walked in like all confident, and I just feel, oh, I can do this. I know I can do it because I've done it. I did it in my head last night. And yeah, I would do that for any new thing. I just then had no reaction, no bodily reaction. It was amazing.

00:31:01 Chazmith: Wow, that's awesome. And that's definitely one of the tools from CFS schools

00:31:05 Amy: That is one of the ones that they teach you, I think, especially when you're trying to rewire something where you often have instinctive reactions to it. It's a really good one. So it's not, let's just go in. And see what happens and if our body freaks out, here's all the stuff we can do. Let's support ourselves so much so that our body doesn't have to freak out. It knows, oh, you're safe, you don't have to do that today. You get to just practice thriving now. Literally seeing thriving as safety. And I still don't know what I want to do with my life.

00:31:43 Amy: So sometimes I sit there and I just imagine all sorts of things. I imagine speaking and helping people through knowledge. I imagine doing a really active job, like manual labor. I imagine being a CEO, I imagine working in a shop. I imagine everything. And I just imagine that I'm safe and happy and peaceful in that place. Because I want my body to start dreaming again rather than fighting fires, I want it to feel free to start dreaming. And if I can start equipping myself by showing my body the world with all its opportunities, is this not just safe, but a fun place for you to explore? And you've been so self protective for so long that you've forgotten that it's fun. It's fun to try things, it's fun to explore your potential, it's fun to do things that you were made to do. And the more that I build that. Into my expectation, I think the more likely I am to easily be able to feel it when I'm there.

00:32:50 Chazmith: Wow. Did you come up with that on your own or did you learn that from Jen and Karden's guidance also?

00:32:55 Amy: No, I came up with that on my own. But what's amazing about Jen and Karden is that. It's not really strictly prescribed. They're not like, right, sit here for two minutes, you do this, you say these words and then you imagine this specifically. They really equip you to find your inner voice because we all speak differently io ourselves and we all are impacted. Some people are very impacted by words, others use their imagination a lot. Some people need to do something physically. And I think they've got a great respect that there's no set way to communicate your deepest part, that you are now safe and you've got to find your own way of moving through that. And of course, they've got all these tools. At the beginning, I had no idea how to do that. I was completely shut off from any self guidance just because I'd been in survival for so long. And so there are loads of tools to use that just get the ball rolling.

00:34:01 Amy: But they really encourage you when if that's where your mind took you, if that's what your body was wanting to play out in its mind or some people do movements or whatever. They just love it as long as it's keeping to the structure of kindness to self and supporting yourself into a new place. That was just one of my little brain tangents, but it really works for me.

00:34:32 Chazmith: That's amazing because you've literally, like I said, brought this light bulb moment where I can see and connect the dots. How... oh, in my past, my body didn't feel safe when I was trying to achieve and reach some new level of success or set goals. And I realize now how that's still a struggle and your idea is so brilliant. And I always joke and say, I don't know what I want to be when I grow up, even though I'm 43 and I'm joking, but it's just how you explain that just made perfect sense.

00:35:08 Chazmith: That how could my body dream big if it didn't feel safe to have these goals? Because the minute it thinks, oh, well, if she's going to go try to do that, we're going to feel all this pressure and we're going to feel all these not good enough feelings again and it doesn't want that, so how could it even begin to really have those big dreams? And so this is like huge for me, so I have no doubt somebody else out there is probably feeling the same way.

00:35:35 Amy: That's amazing. I remember I had that big moment for myself where I realized that joy itself was not safe for me. I think back when I was striving and trying and hurting myself subconsciously. It was a very busy time. There was lots of fun things going on. There was lots of people around. I was involved in everything you can imagine that was in front of me. It was very relational even. I was working with lots of different people and they're all the things that actually I gravitate to in my personality. But unfortunately, they were just all lumped in with that's not safe, because that hurt me. And when I started to first feel safe, it was when I was by myself in my bedroom, lying in bed for hours on end. And I know that that isn't who I am.

00:36:38 Amy: I'm a very relational person. And yet this huge part of me only knew how to be myself when I'm by myself in a quiet, hidden place. And that is great, because for awhile, that's what I needed. And it was okay to let it all go because somewhere within me I needed to say to myself, you are worthy of love when you don't do anything. I learned that lesson. I lived that out and I got. comfortable in that place. And then healing looks like learning how to not use that tool anymore to be safe.

00:37:16 Amy: And so I remember very vividly having that light bulb moment myself, of realizing oh, joy and opportunity and possibility and doing multiple things at multiple times, all of that is very unsafe. And yet this probably equal part of me on the other side is desperately yearning for it because it's more in tune and more aligned with who I am. So I knew, okay, I've got a job here because in order to love myself so well that I let myself live the life I'm good at, I need to almost be a baby again. And go back in with an embryo mind and relearn how to do all of those things.

00:38:07 Amy: And this time it's done with wisdom and with boundaries and with a knowledge of myself where I don't accidentally say yes to everything, but I'm intentional and there's a self love behind everything I do or don't do and let the story build almost what I have been doing with myself is let it build over time the same way as a baby. You learn slowly and life builds and. It builds and it builds and it builds. For me, I think if I suddenly tried to just go back in time and do all of it again and it wouldn't have worked.

00:38:46 Amy: I think I needed to learn piece by piece. This next tiny thing you do is okay, and it's safe. And let's check in with ourselves often if we're enjoying it. And you're powerful now, so if you're not enjoying it, you can step away. And yeah, just redefining the whole thing as powerful and safe.

00:39:08 Chazmith: Wow. Now, do you use future-selfing also for those little baby steps or do you use other tools as well?

00:39:14 Amy: No, I use future-selfing. So when I did the CFS school, I use inner parts and... sorry, parts work and inner child work and a lot of somatic practices to shift myself from sick to not sick. And now I'm just consistently not sick. So I find that future practice is really good for building life. When I joined the course, I remember having an interview with Jen where we were just discussing what we wanted out of the course. And I just said to her, for me, this isn't about just getting well, this is about getting unstuck. I feel stuck. And I know that my health is a big part of that, but it also feels bigger than my health.

00:40:06 Amy: It feels about me and my life. And I said to her, I don't want to stop having symptoms, but my life feel just as stuck and my mind feel just as stuck. And she was just really encouraging. It's all the same thing. So, I find that's the way my brain has split it up, I use those set of practices for getting well and I use future practicing for growing, if that makes sense.

00:40:39 Chazmith: So much sense. Yes, it does. That's amazing. So I actually had an interview. With somebody else recently too, and we talked about how sometimes we can butt up against resistance. Especially when we kind of are feeling better. We're not living the life we want to live over here, but we're like symptom free and we're feeling better and we're coasting by and that's where that resistance comes in. And it can be a lot more challenging to really show up for yourself still and do the work, do the future practices. Have you encountered this?

00:41:13 Amy: Oh, have I encountered this? Yes. I would say resistance was 50% of it. That much for me, being sick for 18 years is my body is like committed to its story. It's a long time of living a way that my body was believing is keeping me safe. So if your body's been doing this stuff for so long because it believes it really needs to, it's not going to fall for it if you just someone walks in and says, oh, you don't need to do it anymore, it's going to be like, okay, I'll just let my guard down everywhere. It's strongly trying to help you survive and it does that with a fierceness and a commitment. And you only really know how fierce that commitment is until you try and change it. And so I actually quite early on, I would have to actually just meet the resistance.

00:42:16 Amy: I wouldn't even be say if I woke up and I was feeling really unwell and I was sore everywhere and I couldn't get out of bed and I would start practicing the way resistance works with me is my mind would just wander. My brain was so foggy, I couldn't even do one of the practices even if someone had put a script in front of me, my body was just not going with it, just really shutting down. And I would just speak to myself and say, okay, there's a big part of me doing resistance today. And I would just check in with my resistant part and really learning how to just have compassion for that strength. So I would say to the part of me doing resistance, oh, you are working so hard always to keep us surviving. And I'm so grateful because we've been through some really tough times, and you've been persistent and right by my side, and you've forced everything to a place where I can survive through it. And I'm grateful.

00:43:28 Chazmith: I'm grateful that you're so strong that. You never let up, that you have never let up throughout this whole journey. And I know it's really hard now. But could you trust me? How about I would do this one practice, which Karden actually gave us this idea of saying to that part, how about today we just role play. We just role play you not having to resist and let's just pretend that we feel safe and we can do joy and we can go outside today. Let's just pretend almost as if you're trying to diffuse the fight or flight instinct. So I think I started to talk to myself with a lot of compassion.

00:44:18 Amy: Not like we need to do this, otherwise we're going to stay stuck because it's just like further compounding fight or flight, because that's just another version of fight or flight. But it was just... this is okay. I get why you feel that way. And it makes complete sense. And actually, I admire your commitment to the role all of these years. And how about you have a day off and just see how it feels? Let's just see how it feels, and maybe at the end of the day you're glad you had the day off. And I would just talk to parts of me like that, and it just broke that tension. It broke the fogginess that was clouding my mind. It broke that resistance.

00:45:00 Amy: And that was really big for me. Because I think when you get very sick, not everyone, but it can be quite common that you get this love-hate relationship with your body. You know, you should love it and you want to look after it. You're caring for it by taking this, that, and the other and trying to do diets and trying to rest and meditate and all of the rest of the things. And that's your care but there's this frustration of, like, I just want to live my life, or I wish I didn't feel this way. Or envying someone who just has this normal, stable, strong life and just taking notice of all the things you can't do and very silently and maybe subconsciously judging your body for that. And I think I had done that for a long time without realizing.

00:45:47 Amy: And sometimes my husband would say, let's rest today, and I would say, no, I'm going to go for that walk. And it had like a non relational air of just like, no, I'm going to do this, I don't care what my body's feeling. If I want to go for go for a walk I'm doing stubbornness. And your body just doesn't ease or soften, there's no wholeness... your body is not working together for a single goal at all. And when your body's at war, when there are two parts that are doing opposite things and you're both as headstrong as each other, you get more symptoms.

00:46:22 Amy: And so I learned how to become one, how to become kind. And that would nearly always just the resistance would lift and I'd be able to get on with what I needed to address.

00:46:38 Chazmith: Wow, that's brilliant. Really brilliant. And that's one of the things I love about CFS school, is I know that anyone who's listening, they've probably heard you say a couple of times now, I was doing resistance, I was doing stubbornness. And so we learn in CFS school to not say, I am, but there's this part of me that's doing this thing this is where that awareness comes into play. Because you might think you're doing fatigue, right? So you're like, okay, I'm going to start using this space tool and I'm going to talk to that part that's doing fatigue and bring in my true self. But then all of a sudden, in the act of trying to do that, you realize all of a sudden that you're actually doing strong resistance that's blocking you from even being able to do the practice and being able to start to get to that deeper, deeper layer of awareness. Like, what's under the fatigue that's blocking me?

00:47:27 Chazmith: Oh, resistance. What's under that? And start there. That's the magic sauce. Because a lot of us... and I did a form of brainer training for 18 months, very strictly and committedly. I never got to those layers. I wasn't taught how to get to those layers. I was just only focused on the outer layer, what the physical symptom was. But now we're learning how to get to what's under that, what's under that, what's under that? And then start there. That's such a softer... the way you explain it, it's soft, it feels connecting, it feels supportive. It feels like working in collaboration with, not against.

00:48:06 Amy: Yes, exactly that. I would imagine it that I was in a house that had loads and loads of rooms, and the beginning, maybe I only lived in this one room that I felt safe in, and the rest were all closed doors, curtains shut, lights off, ignore them, filled with dust, grime, everything. I've just not attended to that area of my heart for years. It's been neglected.

00:48:33 Amy: What I was learning was in order to... what I said to Jen, what was most important to me was that I can enter into being a thriving version of myself rather than just minimizing symptoms. And that meant making every room in my heart a home again. It meant going in there, it meant being part of it. It meant saying, I want to bring you into the community of my life. And you have a role to play here. Even if you feel messy or you don't feel like you're the most beautiful room you're needed and valued and important. And it was like you say, every time you do a layer or you go past something, you do a space practice and something else comes out, I would just let myself jump over there. And I would be, okay, what do you want me to know? And for me, it was every time that happened, I was just opening a new neglected door and I was opening. The windows and letting the air rush in.

00:49:37 Amy: And now I don't need to do those at all because loads of the work has been done. And every now and then I do think, oh, I'm feeling a bit of the old thing and I know what to do with it. But it's quite rare at the beginning. It's this really huge experience of inviting all of yourself into your life, almost. If that makes sense. And it takes a while because often. The reason why we resist things as well is because we're ashamed of it. There are so many parts of us that we can feel ashamed of and not proud of, and it's harder to interact with it than it is to just shut it away and not think a bout it and pretend it's not there. But I really think that at the core of humanity, there is beauty and there is mess. It's a beautiful mess.

00:50:35 Amy: And so for me, the resistance was often about shame. It was something about myself that I didn't want to feel because it would bring with it fear or worry. And I learned I can have this mess without the fear or I can acknowledge this weakness within myself without shame towards it. And it helped me integrate these new layers all the time. During that course, there were just so many layers every day and learning there were some that were very significant and they would come up again and again. And learning how to find a friendly relationship with it was really key.

00:51:22 Chazmith: Yeah, it just feels like the space which is CFS school's form of brain retraining, it feels very different from any other brain retraining because other brain retraining, it's about distracting but space is not about distracting at all. It's really about leaning into and exploring and being open to and discovering and I think that's like a massive difference that I want to highlight, is it's not? Oh, here's a symptom, let me to go distract myself. Oh, there's an emotion coming up, let me go distract myself. It's more like, wait, let's go there. What's underneath? What's underneath that?

00:52:01 Chazmith: And then stepping into true self and then making a choice to state change. There's that element, but it's just so different. You're a really wise sage.

00:52:11 Amy: Thank you.

00:52:12 Chazmith: I hope that in some capacity you do end up choosing a path that is like supporting people in the chronic or the healing community. Because you have a really beautiful way of articulating and just understanding. And you've explained things even today for me in a way that really made a lot of sense that I haven't had explained prior in the way that you've been able to navigate it and explain it.

00:52:37 Amy: That's a real privilege. Thank you for sharing that. I hope for that too.

00:52:44 Chazmith: Yeah, I mean, there's a big giant gift within you.

00:52:48 Amy: Thank you.

00:52:50 Chazmith: And hopefully that alone have made everything that you've gone through in some capacity worth it. Do you have any kind of self care day to day routine these days that you use to keep your self in connection with your body and make sure that you really stayed mindful of the truth of how your body feels?

00:53:16 Amy: That's an interesting question because sometimes when I think, okay, how can I keep staying connected to myself? That in itself, for me can be almost a little bit... I don't know if this is quite the right way to describe it, but it can almost be a little bit fear driven of I'm checking in with myself all the time, you know, if I think my boy is angry or upset. And I'm like, Are you okay? And then 2 seconds later, how are you doing now? And it's that expectation that there's the problem. So actually a big part of my feeling and staying regulating has been actually just trusting the work.

00:53:59 Amy: And I remember Jen and Karden and they say the same thing, they're like it's not about constantly seeking out parts of you that might need fixing or looking for anything or even expecting that something's there. If there is something to see, you'll see it. And if there's nothing that's coming up then you just get to enjoy your life like that's the joy of it. And so I really took that to heart because I know I am quite a spontaneous person, I quite like just doing life as it happens.

00:54:33 Amy: I'm terrible with plans, I just do. The days as they come and I really enjoy that. So. No, I don't. But I do love myself in a better way, which does involve just basic care. Yesterday I was busy and there was a lot of people all day and I just knew that my body wanted movement, I knew that my body wanted space with just me. I could feel it. It was very subtle, but I could feel it. And so I went a three hour walk and I came back and I just felt amazing. And for me that would be... that's something I do I've built up a better understanding of what my body likes, of how my body likes to receive space or movement or what kind of thing is my style. And I just try and respect that by folding it in with my life. But I don't have a particular way of doing it, I just do it as I feel and I really enjoy it.

00:55:43 Chazmith: Do you think you just got to that connection, that understanding through just all the tools over time to know, oh, my body wants like a walk right now to be alone? Because I think a lot of us are like, well, I don't really know what my body wants, I know what my mind wants.

00:55:59 Amy: And I guess that goes back to what I was saying earlier, that the magic of the school was that they taught me how to hear my body. And actually it was hard for me. Because I really trusted my mind but I've learned to really trust my body. So yesterday's example, we were driving home from having been out with friends and I was in the car and I was just feeling a bit wriggly and my tummy felt a bit funny.

00:56:29 Amy: It was nothing, there was no anxiety, I didn't feel unwell, it was just really subtle and the kids were interrupting and I snapped a little bit and I could feel my body was... I thought, oh, my body's doing something. So my body's feeling something. Usually when that happens I just stop. I'm quite an imaginative person, I see in my mind a lot and so I just stopped and thought for a second and I just saw myself walking. And so it was oh yeah, you're. right, the thought of me stomping for 3 hours feels really good in my mind right now, so I'm just going to do that. But I think before I did the school, I would have been a bit agitated, felt a bit funny, snapped at my kids, and I would have just been like, oh, sorry, I'm just feeling a bit grumpy.

00:57:26 Amy: And I might have just got on with what I needed to do in the house and I would have tried to ignore it. Maybe I would have made jokes with my husband because he's really funny and then he would have made me laugh. And I would have thought I got myself out of that feeling, if that makes sense. I might still have said sorry to whoever I needed to and I might have then sought to feel different, maybe even just sit down with the TV. But I took a pause moment, I just paused for a second and I just let my body communicate what it might need and I saw myself walking. So I just did it. So I think I have really changed in that way.

00:58:08 Chazmith: Wow, that's a gift too. One other question because I know we're getting at the hour here, so no self-care routine, particularly you're really keen on just tuning into your body and at one point, way earlier in the conversation we kind of talked about how you don't really have symptoms but you have subtle things come up which is I think the example you gave just now about yesterday. But are there ever times that you have symptoms that start to show up? Is that how you do it? Is there any other way that you catch them before they become a bigger thing, like how you did yesterday?

00:58:44 Amy: Yeah, I think I've also started to learn patterns. And again, this is a really big learning project because when you're in that state of chronic survival, there's too much going on that it's hard to pick up the subtle things because you're firefighting the whole time. When that's gone... and again, it's gone for the first time in 18 years. So I'm relearning the language of my body as I go. And I think what I've noticed is, it's so subtle that no one on the outside would know that I'm doing it. But the first thing that I do... and this is like my nervous system's go to first port of call type thing is that I disassociate, but really slightly. So I'll be with my kids, or I'll be with my husband. I'll be doing life, but I'm a little bit glazed over. I'm a little bit gone inside my body.

00:59:45 Amy: I'm a little bit not there anymore. And it's really subtle that even the people who know me the most wouldn't be able to tell the difference. But I've learned to tell the difference. And I'm like, oh, you're doing that. And so I would then follow that thread, and whatever is going on at that time, I would check in, like, oh, what about this has made you not feel safe suddenly? And I would just have that conversation with myself.

01:00:14 Amy: The other thing that can happen if I don't catch that moment is then I start feeling a bit abnormally tired. Like, I wake up and I feel tired, but I've slept a good amount of hours, and I'm a bit wanting to reach for the coffee. And historically, the fatigue has been really heavy, so it's a really mild version of it, but it's like my body's way of showing me it's not feeling supported or buoyed. And I'm like, oh, okay, you're doing fatigue, and let's have a chat about it and then I would do a practice.

01:00:51 Amy: So I would say now I'm probably needing to do a moment like that once every couple of weeks to something subtle, and it doesn't escalate into anything. It might do if I ignored it. I don't know. But it becomes a lot easier as time goes on because it's small things and it's subtle. And during the course, I would do big, long hours of sitting there and working myself through. And now it's like two to five minutes, and my body's okay again.

01:01:28 Chazmith: It was just practice and practice and practice until you just started to notice those really subtle nuances. Rather than ignore it until it becomes big and then think it's random. Wow, that's so awesome. Okay, I could ask you so many more questions because I just think that, like I said already, the way you explain things is fascinating and really inspiring. But I'm going to ask you one more question. I ask everybody this question. If you could only share one message with the world for the rest of your life, what would you want to share with the world?

01:02:03 Chazmith: And I'm going to add a clause here because you have children. And I really love when I ask this question to anyone who's a parent I love for you to think of it through that lens. If you could only impart one message to your children, what would you want to impart with them?

01:02:17 Amy: It's almost a cliché because this also has been an important message in my life, and maybe that's why I would value it for everyone else. But I would want everyone to know that no matter what you're experiencing, no matter what you have or don't have, no matter what you're up against, within yourself or within your life, that you are beautiful, in and of yourself and you are enough and worthy of the highest kind of love. Would be... if every heart on the planet just knew that like knew it. I believe we would be a very changed race.

01:03:03 Chazmith: I said that was going to be the last question. But I have one tiny more question. Knowing everything that you've learned today and knowing that's the message that you want to impart into the world and just this experience that you've had through the healing over the last year, do you find that how you do teach that message to your kids is different now than it was prior?

01:03:25 Amy: Yes, absolutely. I feel actually much more able to just be that message. I think before I would always have. Known that that was what I believe. Is the most important for them to hear and receive from me. But I think now I do it in a much better way and they can feel it rather than just being told it and feeling it sometimes, but things not always adding up. And I feel like I'm just much more able to be that for them. Which was a really big reason why I did this course, because I wanted to be for them what I would have always wanted for myself, or not even for myself, but just what I want everyone's experience to be as they're growing that it's safe in love all the time. And I think also just in the way that I actually parent them. The way that I guide them through situations.

01:04:31 Amy: The way that as they're going through their bodily changes and hormones and all the rest of it, it's been amazing. If I've practiced having this relationship with myself that's endlessly compassionate and kind, I can show them how to have that relationship with their selves, which is going to be a really big tool for them through very hormonal, difficult years as they go through many changes and are learning how to be human. I think it's hard. And I would want them to have the example before them of what self-compassion looks like because all of us mess up all of the time and if we're not compassionate in that spot, we're going to be burdened very quickly.

01:05:25 Chazmith: And they're learning by what they watch you do right and who you be. You can tell them they're loved and you can tell them to be compassionate towards themselves, but if they see you not doing that, then it's a different experience.

01:05:39 Amy: Oh, always. Children are remarkably clever. They can tell what you really believe or not.

01:05:47 Chazmith: Well, lucky for them that their mom has gone through this journey and got to this other side. And I just wanted to say thank you so much for being here with me and your vulnerability and willingness to share your story and these insights. I feel so excited to share this one. I feel very touched by it myself and I'm very excited to get to share it with other people in hopes that they will also feel touched and inspired and learn some really new insights.

01:06:14 Amy: Oh, thank you. Thank you so much for having me. This has been really wonderful.

01:06:19 Chazmith: That is all for today. How much did you just love Amy's story and message? Make sure to follow her on Instagram so that you can continue to see how things do unfold for her and in her life as she continues to create her thriving life. If nothing else, I hope today's message was a reminder that healing is possible for all of us. I love you all. Please make this week great.