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Feb. 28, 2023

125: Navigating Recovery of ME/CFS with Lindsay Vine

125: Navigating Recovery of ME/CFS with Lindsay Vine

This episode is brought to you by Primal Trust Academy & Community by Dr Cathleen King. Sign up for one year today & receive 2 months FREE, or use the special code: OPIW to get 5% off your monthly membership fee.

Our guest today, Lindsay Vine, is here to share her recovery story. Along her 7 year journey to recovery, Lindsay used multiple online programs, and found success in healing progressively through focusing on the 4 areas that various online programs teach: lifestyle skills, brain-retraining, somatic bodywork and self-discovery work. 

Tune in to discover: 

  • How Lindsay breaks down and organizes these categories to best support her on her journey 
  • How she was able to discern what felt right for her at any point and why timing matters 
  • How she has used this experience to create awesome tools to help other people in the community navigate their recovery journey

Lindsay also co-hosts, with Stuart Bryan, a podcast that is another wonderful resource in this community: Post Viral Podcast 

She has collaborated with a previous podcast guest, Liz Carlson, to create a CFS Programs navigator guide to help make choosing the right program for yourself and your needs so much easier (because let's face it - there are a LOT of options these days and that can feel overwhelming). They did all the research for us! 

You can connect with Lindsay on IG @CFSPrograms_Navigator or check out her website 

Follow @OurPowerIsWithin for weekly updates, challenges & more

Join our FB group and let's connect! 

Check out the new website: ourpoweriswithin.com 

Here are some popular healing programs: 

CFS School (not only for CFS) - comprehensive brain retraining, somatics, polyvagal, trauma healing, and inner child work all in one. 

Regulate: also a comprehensive program inside a monthly membership and community (CODE: OPIW for 5% off) 

DNRS: classic brain retraining program 

Disclaimer: The Content provided on this podcast is for informational purposes only. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Individual results may vary.

The show notes may contain affiliate links. IF you click and purchase product or service I might be compensated. Thank you for your support.

--- Support this podcast: https://anchor.fm/ourpoweriswithin/support


00:00:00 Chazmith: Hi. 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 to realize that you are the healer that you've been looking for all along. We are capable of healing and mind and body and soul.

00:00:24 Chazmith: Today's episode is sponsored by Primal Trust Academy and Community created by Dr. Kathleen King. She's a dear friend of mine and has been featured on this podcast three times now because every conversation provides so much value. Primal Trust is one of the most rapidly growing self healing based platforms to help those with chronic illness and trauma. It has a new level one program that just launched called Regulate, targeted for those both new to self healing of chronic illness and trauma, as well as for health professionals. It's a complete package of both brain and body based somatic practices. There's also a Level Two mentorship starting April 4, and the prerequisite for Level Two is that you must have completed level one first. So the time is now to join Regulate. If you really like the sound of all this to be ready before April 4. Check out the link in the show notes for more details.

00:01:14 Chazmith: And we've been on a testimonial role lately, right ? Because why not? So today I have another testimonial for us. Our guest is Lindsay Vine, and she is sharing her healing journey. The ups, the downs, the good, the bad, and all the lessons learned along the way. And a cool tidbit. Lindsay is actually a co-host for another awesome podcast in this community called Post Viral. And season two just launched, so make sure you check it out if you haven't done so already. Another cool fact is that she also recently launched a CFS Recovery Programs guide with a previous guest that we've had on the show, Liz Carlson, episode 111. Links to this guide will be in the show notes. But I want you to know this guide is such a wonderful resource to help people get an in-depth analysis on the various programs available for us out there to help us figure out what is the best fit based on where we're at and what our needs are. It's so cool, and the best part is it's very affordable. Anyhow, I had a blast chatting with Lindsay. I love what she's doing in this community and I am so excited to share this chat with you all today. Enjoy.

00:02:23 Chazmith: Lindsay, thanks for being here with me today.

00:02:25 Lindsay: Hi, Chazmith, nice to talk to you today.

00:02:28 Chazmith: Yeah, of course. I think that what we're going to do today is actually have you share some of your healing story, which I know is not complete yet. But that's okay because I always ask, when is it ever actually complete, right? I think we go into these journeys thinking that it's complete when we're free of physical symptoms, but I don't know that it ever really stops there because I think as we are moving through this journey, we start to realize that there's so many other aspects that we can heal and grow through.

00:02:58 Lindsay: Absolutely.

00:02:59 Chazmith: So even if you aren't 100% free of physical symptoms, I still find that there's so much value people can share in what they have accomplished along the way.

00:03:10 Lindsay: Yeah, absolutely. And it's more just about progress when I track where I was last year at this time, even the difference is astronomical. So if you concentrate on the negative aspects, then you're going to get more of the negative. But if you concentrate on how positive things have gotten comparatively, then that's what you're going to get. It's kind of interesting.

00:03:32 Lindsay: Yeah, that's a really good point. It's all about celebrating the wins, right? All the little wins along the way. And like you said, if I think about how I still have X, Y and Z all the time and dwell on that or get upset over that or feel like I'm losing hope because this isn't gone yet, that's such a different perspective than if I rather focus on all the shifts that I have made in a positive way. Exactly.

00:03:58 Chazmith: Well, let me ask you first, did you actually have what many people refer to as a perfect storm?

00:04:06 Lindsay: Yes, I did.

00:04:08 Chazmith: Okay. It's very common.

00:04:09 Lindsay: Yes.

00:04:10 Chazmith: So let's talk about life before your perfect storm.

00:04:13 Lindsay: Sure.

00:04:13 Chazmith: A little bit. Just where you were at, what you were doing, what you were up to.

00:04:17 Lindsay: Yes. So I was doing my master's degree in public health. Right around the start of my Master's degree, I was in a car accident where I got quite bad whiplash. So the entire two years of my Master's, it was like constant neck pain. I was just constantly fiddling with my neck and feeling that terrible, strained pain while this intense, tense period of stress was happening. I think any Master's program is stressful, but now when I reflect back, I think the fact that I didn't have an end goal was why I took it on. So in such a horrible way, I would say because I think people who know what they want to do with their Masters can look at it as like, "Okay, this is very stressful right now, but in the end, I will be this." Whereas for myself, it felt like the next smart step because I had already been working in health research, but I didn't really know what I wanted to do with myself. 

00:05:20 Lindsay: Also, because a Master's in Public Health is both arts students as well as science students, who often are pre-med like these are people who want to be doctors, but it'll look good on their resume to have a Master's in Public Health. So very competitive people in my program. And I got to this stage of just saying, "Well, I'll just accept that I'm dumb." I'm just dumb, and then I won't have to worry that I feel less than people because I've just accepted this fact, which was so terrible on my mental health. And even though I was doing so well, I got A's. There's nothing there that you would see in my performance that you'd be like, "Wow, this girl is struggling." But it's so interesting how we internalize it.  I also had strep throat at least four times during my Masters. So in two years, I got strep throat over and over and over again, and I could really go on and on. It is truly a perfect storm. 

00:06:19 Lindsay: My roommate at the time brought home lice because she was a teacher, and I got lice. And this, I think, was one of the big factors because we kept kind of passing it back and forth because we both have thick hair, and they call it super lice these days. It's really hard to get rid of. And it was just constantly on my mind because my head was always itchy, even if they weren't there anymore. You have this phantom lice, they call it, you know, that constant fear response that comes along with these chronic illnesses. I think part of that was triggered by that constant awareness of my head and the itchiness. And while I was writing my master's thesis, during my breaks, I was watching Breaking Bad, which is one of the most stressful shows anybody could even imagine. So I'd be so stressed, stressed, stressed. And then I'm like, "Okay, I got to take a break." And my break was to watch a stressful show. You imagine what that must have been doing to my nervous system? 

00:07:20 Lindsay: So I could probably find a few more factors in there as well. But it's just quite incredible like how unbelievably unaware we can be of our bodies when we're in a stress state. And it all culminated with my getting strep throat, right? I literally handed in my master's thesis, and I was like, "Oh, my God, I'm done," this great relief, this huge breath of air, and my body just was like bam. It crashed so hard. The next day, I had strep throat. I took antibiotics. They didn't work. I took another round of antibiotics. I thought it was starting to work, and I was starting to exercise again, of course. And then that's about the time when all my energy just disappeared. It was like my body was done. It was so done. So, yeah, I definitely had a perfect storm. It was quite a classic case of that.

00:08:21 Chazmith: That's just kind of one thing building on the next, on the next, on the next, until boom.

00:08:26 Lindsay: Yeah. And when I reflect back during my Masters, I was having panic attacks. I'd wake up in the night just hyperventilating, and for some reason, I never even reflected on why that was happening or if I should change my behavior. I wasn't sleeping well, all of those things.

00:08:44 Chazmith: What was the factor that motivated you to get your Masters, because you said that most people in that field or that Master's program, they had very clear goals of what was next or what they were working towards, but you did not. So what really was the motivator for you to do that and pursue that route?



00:09:02 Lindsay: Honestly, I think and I know now, it has to do with having that achiever mentality of, "Okay, I was working at a university in health research. That was starting to get old." The role I had, I couldn't really go anywhere with that farther upwards without a Master's degree. But I didn't necessarily say I want to be a health researcher. I didn't know  exactly what I wanted, but I felt like it was the next logical step to take would be to get a Master's. Also, a lot of my friends have Master's degrees and PhDs, and yeah, it truly was like, "Okay, here's the next step for me I could." Do us achievers feel good, as long as it sounds good  what we're doing, a lot of us probably can relate to that.

00:09:52 Chazmith: Right. As long as I'm achieving, doing this next thing, getting this next step, learning this next thing, getting this next degree.

00:09:58 Lindsay: Yeah, and I love learning, so there's definitely an aspect to it, but there's a lot, especially in this Master's, probably in others, too, of like, "You should be networking, you should be doing this, you should be doing that, and you should be reading these hundreds of papers a night." And it was too much for me. I need a lot of self care time that was not happening at all.

00:10:20 Chazmith: Right, but when you turned it, you said you turned in your last paper. Like, that was actually it. That was the end. You actually got your Masters before your body went to shut down.

00:10:32 Lindsay: I did, yeah. I got there.

00:10:34 Chazmith: Wow, that's wild.

00:10:35 Lindsay: Yeah. I have my Master's degree, and then my body just shut down. And now I look at it so interestingly that I had to get sick for the past seven years to really understand what I needed to use that Master's for, because now that I'm helping people with chronic illnesses and using my Master's degree, I never could have imagined feeling the purpose I do now. So it's so interesting.

00:11:05 Chazmith: Right. So you said seven years. I was going to ask you what year that this perfect storm was in, just for timeline.



00:11:15 Lindsay: Yeah, it was at the very end of 2015. So start of 2016, so yeah, seven years ago, almost exactly. Yeah. And I would say the last two years have been upward, upward trajectory, which we can talk about, but about five years before that was a lot of trial and error.

00:11:37 Chazmith: Yeah. Well, my guess is that you probably did the typical, "I'm going to go try Western medicine. I'm going to try this medication. I'm going to do this therapy. I'm going to do all these things." And then about two years ago, you turned a different direction.

00:11:50 Lindsay: Absolutely. Yeah.

00:11:52 Chazmith: So what was that catalyst that two years ago really helped you to begin an upward momentum in the healing?

00:12:00 Lindsay: So it's a lot  of things combined. Like you said, I come from a very scientific background, and I, of course, was putting all my faith in Western doctors. I did the typical things that most people do. Even one doctor said this is a kind of depression, probably. So I went on antidepressants, which chronic fatigue is not a kind of depression, even though antidepressants do help people. I am still on LDN as well, low dose Naltrexone, which never felt like it did much for me. Maybe a little bit with pain, because I also have pain as well as fatigue as one of my symptoms, but never did much for me either. Yeah, I can go on and on, of course, like you said, about the kinds of things I tried, including fecal transplants, we can talk about that if you're interested. I literally have tried the craziest things that doctors endorsed. 

00:12:57 Lindsay: But the thing that changed about two years ago, so it's a bit of a long story, of course, but I was living on a small island after I got sick, about a year in, I just couldn't handle anymore. My friends were here. I'm in Vancouver, Canada. They're doing all these fun things, going for hikes, living their lives, progressing, progressing and I was so sick. And I got an offer by friends, parents who have a cabin on a small island, and they said you can go stay there if you like. And I thought this was great, I'll go heal in nature. So I moved to the small island where there's like a thousand people, and I was like, "Okay, this is great." But when I look at it in retrospect, I really was running away from people taking care of me and feeling like a burden. So it was partially wanting to heal in nature. And a lot of doctors were like, "That sounds like a great idea." But I was so lonely there. I was very isolated, and nothing harms us more. I truly believe in these kinds of illness than isolation. 

00:14:12 Lindsay: And it's so ironic because with our sensitivities to light and noise and movement, our natural reaction is to isolate ourselves. We feel like what else are we supposed to do, right? Go in bed and huddle up and what else can we do? But it's also on the mental side of it so harmful. And I see this chronic fatigue disorder, ME/CFS, as a mind body disorder. So if you're lonely all the time, your body is not in a healing state. Because we, as human beings, we are communal animals. We lived in hunter gatherer societies for hundreds of thousands of years in groups. Our body's natural state is to live with other people. So by living in this cabin in the woods, my body did not feel safe. So I got progressively worse and worse while I was there, honestly. I'd come back over to Vancouver for appointments, but by the time I got back, all the benefits of the appointment had been negated because I was back, like the stress of the fairies and everything and back to this lonely environment. No amount of acupuncture or osteopathy was going to help me until I changed my physical situation.

00:15:33 Lindsay: So about two years ago was I would say my rock bottom was a little bit before two years ago was about my rock bottom. Where I was at the point of I was pretty much completely bed bound, still living by myself. I would go once a day to the bathroom. The rest of the time, if I had to pee, I peed in this tupperware beside my bed. And I had like a stockpile of tuna cans and a can opener and fork beside my bed so I didn't have to go to the kitchen. And I would just eat that. I had crazy sinusitis, such sinus pain. I had candida like crazy. I had SIBO, small intestinal, bacterial overgrowth. My body was just falling apart. And nobody was visiting me because of COVID, they couldn't get away. Everyone was in lockdown. So I was truly alone for weeks at a time. And that was my rock bottom. That was pretty much when I was like, "I don't think I can do this anymore."  And it was kind of that choice of trigger warning. Do I end it all or do I make some kind of huge change? 

00:16:45 Lindsay: And thank God, I have amazing friends because this is what I tell everyone about rock bottoms is you have to talk to people. Talk, talk about what you're thinking. Do not keep it all bottled up. I talked to my friends. They pretty much had an intervention to get me off that island. They found me a place to live here in Vancouver. They moved me. They literally delivered me meals for weeks and weeks and weeks. They figured out a way to take care of me. Like my friends saved my life, truly. It also coincided with when I started a program. And this is why we'll talk later about what I'm doing for a career now, helping people with decide on the right program for them. 

00:17:30 Lindsay: For me at the time, it was CFS Health. And I'm not saying that's the right program for everyone. The problem with telling people what programs you took is they automatically are like, "Oh, she did this, therefore I should do that." But it enabled me to make friends with people all around the world, particularly Stewart, who's my podcaster partner, who's my best friend now. And I wasn't doing this alone anymore. So that was really huge. I think that was the biggest thing is getting off that island and having friends that were also recovering with me. That was a really big part of it. I could keep going on, but I feel like I'll let you comment.

00:18:14 Chazmith: No, I think that it's great listening to this story so far I've never actually heard of CFS Health.

00:18:20 Lindsay: Okay.

00:18:21 Chazmith: So maybe you could just share very briefly what that is. Is that a brain retraining program? Is that something totally different? Just give us a little insight as to what that is for anyone listening who has not heard of it. And then you could kind of just tell us more about where you went from there.

00:18:41 Lindsay: Yeah, sure. So CFS Health and I had also done a brain retraining program previous to that, which did help for a little bit. I did DNRS and then I had another crash after that. But I'll talk in a bit about how I used it more recently. But CFS Health is more of a lifestyle program with Toby Morrison. It's out of Australia. And the nice thing about that program for me is, it's a six month program. It's quite expensive, but you report your wins weekly. So it gets you a little bit of a sense of accountability, which can be very hard with these illnesses, to feel accountable to something. And like I said, there's a dashboard forum where you can make friends. They have a mindset coach and they have Toby Morrison, and then they have a doctor and they do weekly calls. So a lot of the information in terms of pacing and diet and movement and stuff, I already knew at that point, but just those few aspects for me of accountability and making friends were really crucial at that stage.

00:19:50 Chazmith: That makes so much sense.

00:19:51 Lindsay: Yeah, so it's so interesting as I am the hugest proponent of programs, but finding what you need at that time is so crucial because like I said, I did DNRS earlier and it helped. I got from, for a little period of time, 1000 steps up to 8000 steps. But then I had another huge crash, precipitated, of course, by another drug change. But there was so much I still had to learn that it wasn't quite ready for that. Some people can just do a brain retraining program and that's all they need. But as I talk about I have a video on this, but there's really four areas of healing that I found are taught in all these online programs. And some teach one aspect, some teach all of them. There's the lifestyle aspects, which include setting your goals and having accountability and diet and sleep and pacing and all these basic things that they seem simple, but they're not easy, if that makes sense. Never get mad at yourself for not being good at pacing. It is hard. 

00:20:59 Lindsay: And then the second area is brain retraining, which some people need more than others in terms of changing how we think. The third area is somatics which is getting in touch with your body, like I was saying, about how I had no idea I was even having panic attacks during my Masters. A lot of us in society are so used to feeling a feeling and then pushing it away instead of letting it actually move through our bodies. And then the fourth area is self discovery. So this includes trauma work, trauma processing, but also just general areas of knowing what your purpose is and what you should be doing in life. So I still had a lot to learn two years ago, but the last two years, I've really dug into those four areas. And that's really what I would say, is how I was able to heal. But, yeah, I can talk a lot more about that, too.

00:21:59 Chazmith: Yeah, I really like how you just broke that down into four aspects. That's really helpful, I think, for people listening. I think it's a beautiful thing that there's so many wonderful options for us these days in the spectrum of self healing programs. Although sometimes it can be overwhelming for some people, right? Like not knowing where to begin or what to choose or how to know what is actually ideal for me. So you can see like program hopping or it can be very confusing. I think options can be very good, but also sometimes overwhelming.

00:22:33 Lindsay: Absolutely.



00:22:33 Chazmith: When there's too many. But I'd love to hear a couple of things. One, how were you able to discern at the time that you needed to put a pause on DNRS and then start the CFS Health program based on the crash that you said was from a result of a drug change? But what actually helped you to know like, "Hey, I think I actually need to take a pause on pure brain retraining and look into something else that will be more supportive for me."

00:23:07 Lindsay: So the DNRS as a program is really wonderful for some people, and I have clients that I've recommended it to, for sure. So it's not that I'm dissing the DNRS, and we say this in our programs guide. I have a program guide out now with Liz Carlson, who's been on this podcast. We very much specify in that guide that the one issue that we find a lot of people have with the DNRS, including myself, is that they don't prepare you for crashes and setbacks. And if these things happen because a part of the program is that you're visualizing yourself in six months being totally well, you literally have to get yourself into an ecstatic state of you're just so sure that this is what's going to happen in six months. And that's a part of what helps the brain change. However, when you're so sure that you're going to be better in six months and then you have a big crash, I cannot even explain the level of depression that followed that like when I was back to bed bound after having made so much progress. And I'm sure there's listeners out there who've had this happen before where they felt like they were making great progress and then had a big crash and, oh, boy, I know that feeling. It is so devastating. I still wonder if I have forms of PTSD from it. And it's happened a few times during my illness where I've had big crashes when I thought I was progressing, when I just know now that all the factors I needed to incorporate into my healing were not being covered.

00:24:49 Lindsay: There also might have been some mold while I was living. I wonder about that sometimes, too. It's hard to really know completely why my body wasn't ready to be in a healing state. But I couldn't touch the DNRS for about a year after that, even though I had seen that it was helping me progress before. It was like I'd think about doing it and I'd have an adverse reaction. No, because it failed me in the past, but I slowly got back to it in the past two years. The first year, I would say I was doing it half ass. Can I say that on the spot? Half ass is something that is a problem with a lot of people doing DNRS, is that they want it to work for them. But it really does take a lot of effort to do it, really do it for 40 minutes to an hour a day. And that's why I hate to question people when they're like, "Oh, I tried this program. I tried this program." It's like, "Did you really do it?" And I don't mean that in a mean way, but I need to really know if they really did it or not to know if it helped them. Because for me, for sure, until this past year, another huge catalyst for me getting from about able to walk an hour to now I can walk endlessly was I got a dog, which was a huge risk.

00:26:16 Lindsay: My dog, I always call her like my guardian angel. She saved me, but I knew when I got her well, I thought I was getting an old dog, and I was like, "Oh, this would be okay because she's older, but I got her, and she has so much energy." And I rescued her from Mexico, and they said she was eight or nine, and then the vet here said she was like two or three. I was like, "How did they make such a mistake on her age? She has so much energy." So I instantly knew I needed more energy than I had. And that's when I was ready to knuckle down with the DNRS again and be like, "I need to do this every day, twice a day, or else I'm not going to be able to care for my dog."

00:27:05 Lindsay: And it's interesting because you can take that two ways. That could be something that turns you into a fear state of like, "Oh, no. Am I going to be able to do this? Do I have enough energy?" You could go into that loop, but I believe because I'm so passionate about animals, people who've listened to my podcast would know that. But having a dog has always been my dream because it was something I was so passionate about, and I knew I'd been able to make changes in the past with it. I knew it could work. But it really gave me that motivator to do it 100%. So that helped me get from an hour of walking to where I am now, where I can walk endlessly. So it's really interesting what you need to make these programs work for you, what state you need to be in. Yeah, there's a lot of factors there. Did I answer your question?

00:27:57 Chazmith: Yeah. I mean, in a sense, in hindsight, I'm just curious, can you look back and see? Because you said something you said that early on, the first time you crashed, you felt like the DNRS failed you. And do you feel a little different now because ultimately you said it was from a drug change. It wasn't. That you put all your effort into it and it didn't work or do anything. You did  legitimately make progress, and then you had made some adjustments to drugs and had a crash, I guess it doesn't sound to me like DNRS really failed you, although I can completely empathize and understand in the moment how it could feel that way.

00:28:34 Lindsay: Yeah, I guess. I mean, failed me in terms of it didn't prepare me properly for setbacks like that, for having to start from scratch again after having made so much progress. I also, again, was on that island. So I was so lonely that I truly think it's a detriment that we have so much time to think. Because when you're thinking all the time, a lot of that think is fear. And fear is truly the antithesis of what we need in healing. And it's so normal also to be fearful. How can you not be? You have a chronic illness and you are not sure if you're going to get better or not. So that's the worst thing for our nervous system, though.

00:29:20 Lindsay: Yeah, I think it was more about that it didn't prepare me. I also know that I know how much work I've done in other areas, such as trauma work. I wonder how much that was also a factor. I had a friend early in my illness tell me she thought I had a trauma related illness. And I remember just laughing her off, being like, "Yeah, right." I had a great childhood. I hear this all the time from clients. I had a great childhood. What are you talking about? But once I finally started to look into that in the last few years, and really started to understand the difference between big T trauma and small T trauma, and the difference being that big T trauma is a big event, ones that you'd stereotypically call traumas. Whereas multi-traumas is little things adding up over time. And truly, trauma is as simple as parental figures not meeting our emotional needs the way that we needed it. It doesn't even mean they did anything wrong, necessarily, but didn't understand what we needed.

00:30:26 Chazmith: Right.

00:30:26 Lindsay: So there's a lot there with my mom and with my dad that I could go into about what I was not acknowledging from my childhood, that once I did a lot of somatic work, which you can get from certain programs, but I learned through books and I taught myself through podcasts and YouTube. I figured out how to do it and I really went for it. And that released a lot from my nervous system. It felt like a big release. And so that was one thing I think I was really missing. I also didn't know what I was going to do with my life. So have you heard of the term secondary gains?

00:31:06 Chazmith: Yes.


00:31:07 Lindsay: Yeah. This idea that no one would ever think of themselves, that it's easier to be sick than not sick, because, oh, it's so horrible being sick. How could anybody say that? But when you don't know what you're going to do after you're sick, there's something subconscious sometimes that's saying, maybe we're safer this way. It's not even conscious, necessarily.

00:31:37 Chazmith: Yeah, because it's the big unknown like, "Okay, well, if I'm not sick, well, then what am I going to do with my life? What do I want to be? What do I want to do? What is my passion? What interests me? What can I offer the world? "And when we don't know those things that can feel scary and not safe.

00:31:54 Lindsay: Exactly. And it's so hard for people to wrap their head around that one, understandably me as well. I was like, "I'm not one of those people." But yeah, I can see now, looking back, that there were definitely aspects of that, for sure. Yeah.

00:32:10 Chazmith: So you had done DNRS, then you ended up taking a break. You did CFS Health, and then at some point, you went back to DNRS and really hunkered down. When you got the dog, I imagine you did some visualizations of you and the doggie walking and having a good time. Then at some point, you integrated somatics into your practice. Was that beside DNRS or was that after you got to a place where you felt like you did not need to do DNRS on a consistent basis anymore?

00:32:42 Lindsay: Yeah, I think it was both. It was like what I've done over the last two years, which is something I learned in CFS Health, was separating my year into quarters and not calling them goals. This is something that I thought of. Instead of calling them goals to what you want to work on in those quarters, just call them focus areas. Goals can be really intimidating, even just areas of focus I would say. Last year, so 2021, I guess two years ago now because we're in 2023, but I separated my year into four quarters and it's so interesting how much that ended up working out in terms of where I focused my energy. And then last year, again, I did the same thing. And the first section of the year last year was… I was in Mexico with my podcast partner Stu, and we were podcasting. And that really gave me that sense of purpose that I was saying was missing in terms of what I should be doing in terms of not exactly podcasting, but that's kind of where I figured out how I wanted to help people with CFS. And there will be a season two coming soon of Post Viral podcast as well.

00:33:58 Lindsay: And then when I got back is when I got Winne, my dog. So my focus was on the brain retraining again. And yeah, it was really that was my hugest focus for those three months. And then the next three months I was still doing brain retraining, but my biggest focus was on trauma work and really going into… I read things like how to do the Work by Nicole Lepera. Have you heard that book?

00:34:23 Chazmith: Mm-hmm (affirmative).

00:34:24 Lindsay: Yeah, she's incredible. She's the holistic psychologist on Instagram. Her book was very, very helpful to me. And then I went even deeper, a book that she recommends called 'Adult Children of Emotionally Immature Parents.' And that one really helped me as well. All along that time, using the somatic tools that I had figured out, I had gone to a somatic therapist a few years prior and it did nothing for me because I wasn't in the right headspace for it. Again, it was a suggestion of a friend. But now that I was in that head space of like, "Okay, maybe trauma is stored in the body and I can release these things," I was able to do it and feel these feelings that I hadn't as a child. And so I was still doing brain retraining for sure. But in that next quarter, it was more of a focus on the trauma work. Yeah, that's what I really suggest to people is breaking up recovery into parts because it's almost never just one simple thing and it can be really overwhelming if you're trying to do all these things at once.

00:35:32 Chazmith: Yeah. You don't really want it to be like your full time job.

00:35:36 Lindsay: No. And that's another problem with it. It can become a full time job and an obsession in a way that's stressful.

00:35:45 Chazmith: Right. Yeah. And you're putting pressure on yourself and you're trying to be perfect with it. And also, if you're doing a full time job trying to heal, when do you get to say yes to all the other important aspects of life that are also nurturing and healing?

00:35:58 Lindsay: Yeah. Like for example, in the year before the 2021 year, the first three months I had to figure out this candida issue. My gut was like my focus for those three months, that first part of when I was in Vancouver, and that's when I was ready to hunker down and do the full three month candida diet, which is so restrictive. And I don't recommend it for everybody, but if you've tried everything, if you've tried to fluke can't and all the antifungals and everything to get rid of your candida, then your body might need, truly, that full three month cleanse like mine did. And then the second quarter was about working on my steps. That was my focus. It was like about adding to my steps slowly, slowly, slowly, and really having little goals of what I wanted to get to. So at that point I was still only able to go around the block when I started, but I wanted to get to the dog park, for example. So having that small goal. And then I wanted to be able to get to a certain store so that small goal. And like these small distances that I would work up towards and I'd focus on the flowers and how beautiful everything was instead of worrying while I'm pacing. That's another thing I really recommend to people is while you're pacing, don't think about the pacing. It's such a mind f, as I call it, but have little goals. I like that. And then what I was getting at for my third quarter, which was summer, was just enjoy my friends, be in the sun as much as possible. I literally just made happiness my focus area, which we need sometimes because these areas of healing, it's work. So I really did have to take even though, of course, during the other areas I was still doing fun things. That was like my main focus for the third quarter last year.

00:38:03 Chazmith: I like how you do this and how you break it down because I always say things come in seasons. It's like with anything, you can't do it all, all the time.



00:38:11 Lindsay: Yeah, exactly.

00:38:13 Chazmith: If you have like ten hobbies, it's really going to be stressful if you try to incorporate all of them in every day and every week. But if you have like, "Okay, I know that this is really seasonal and during this season I'm going to focus on this more and then maybe next quarter, I'm going to pull out this hobby," so it could apply to everything, for sure.

00:38:35 Lindsay: Yeah, absolutely. And that's also a thing that when I'm working with my clients, trying to help them pick the right program for them, of course, they just want to do a program that has everything. They're like, "Okay, this one has lifestyle, it has brain retraining, it has somatics and self discovery work." But it's so often overwhelming for people. It's so hard to do a program that has all four and really pace yourself correctly and not just try to do everything at once. If you do it over a long enough time, like Primal Trust, for example, has all those elements. And CFS School is a really good one, too. You have to give yourself the time. You really have to give yourself the time with these programs.

00:39:21 Chazmith: Absolutely. Yeah. It's a really good point. It's easy to just think, "Oh, it's all included, so automatically that makes it perfect," but that doesn't mean it's perfect for everybody.

00:39:31 Lindsay: Yeah. And sometimes it's actually better to do something like the DNRS or another brain retraining program and just focus on that for six months.

00:39:40 Chazmith: Right.

00:39:40 Lindsay: And then just do programs that specify in specific areas that you're missing.



00:39:45 Chazmith: Yeah, absolutely. Because I know, even Ashok says we know this, that it's hard to maybe act like you said maybe when you did Acupuncture and all those things, there could be some benefit to it if we were already in such a dysregulated state, because we can't heal and dysregulation no matter what we do.

00:40:05 Lindsay: Exactly.

00:40:06 Chazmith: Starting out with something like a brain retraining to just get re-regulate the nervous system and calm down our systems can be huge as a starting point before we are ready and feeling more ready to transition into something else versus if you go try to do trauma work when you're super dysregulated, you could essentially cause more harm than good. So there is really a time and place for things depending on each person's personal path and journey and what they're up against.

00:40:37 Lindsay: Yeah. And I have that with my clients to have to be careful even to really talk about trauma work. I want them to know it's probably a part of their journey, but not right now. This being, if they're extremely dysregulated and they haven't heard of any of this stuff before, then if they've already done certain programs and they're on their way, maybe. But like you said, it can be dangerous to go into that area before your nervous system is ready. For sure.

00:41:05 Chazmith: Yeah. I mean, it's just the same that I think that somatic tracking is an absolute wonderful tool. I love it. Now, if I'm somebody who is very new to all this and still in a very fearful state and extremely dysregulated and very afraid of every symptom, sitting there and breathing into the symptom and paying attention to it is likely not going to help me. I am likely not going to actually get the benefit I'm looking for from that exercise.

00:41:37 Lindsay: Yeah. And absolutely. I would say in the first five years of my illness, I did so much of that, so much body scanning, but I'd go straight from a body scan back to worrying. So it's not going to help you even if you take tiny breaks from that to do a nice activity until you're literally living in a healing state. And that's also why I'm sure you've talked about this on your podcast before, why supplements are just being wasted by killing yourself with supplements because your body is not uptaking these things into your cells because it's in fight or flight.

00:42:13 Chazmith: Right.

00:42:13 Lindsay: So until you're in a parasympathetic nervous system state, you're in a rest and digest state consistently. Then now, I can take supplements and they help me, but I took the same ones when I was really sick and I did nothing.


00:42:32 Chazmith: Right. Yeah, that's a good point. Okay, so we're talking a lot about different program options and deciding and determining and discerning what's best for each person at any given point in their journey, depending on where they're at. What inspired you and Liz to actually create this program guide?

00:42:52 Lindsay: So it was interesting because it was kind of one of those... timing wise where Liz and I had both had a similar idea of wanting to put something like this out. I had already decided at that point that I wanted to be a CFS programs navigator, helping people decide the right programs for them. Because of my experience, I really feel like having the structure of programs. And from all the recovery hundreds and hundreds of recovery interviews, I've listened to the main thing that helps people heal. I mean, once in a while you do get one of those one off things where it was a specific drug or something, but usually, either it's through programs of some kind that help people heal or learning the material that they teach in these programs. So I knew I wanted to be a guide. I knew from all the work I'd done on my values and my purpose that my role in life is to be a connector to connect people with what they need.

00:43:59 Lindsay: All my friends will tell you they're all friends with each other through me. I like to bring people to other cool people. I like making those connections in my head to what people need. And so I think Liz and I both had the same idea around the same time, that there needs to be a guide out there to help people choose what program is right for them. So we started talking about making one together, and she started interviewing people who'd done certain programs, and I started interviewing people who'd done other programs. And it was really important to us that it be based on the feedback of participants, not just the creators putting out their advertisement. We really wanted to put real participant feedback. And she's done a few programs. She's done ANS Rewire and she's done Primal Trust and DNRS and I've done the DNRS and CFS Health. And I got access to a few other programs as well from interviewing creators. So at this point, I have access to most programs and I got to review them myself. So, yeah, that's kind of answering your question of why is that? We saw the need. People all want to know what these programs really are like for participants. But there's so many factors that we really wanted to help people figure out what was right for them.

00:45:27 Chazmith: Yeah, I love it. It's a very helpful resource, I think, for the community.

00:45:32 Lindsay: Yeah, we've had really good feedback so far. I, of course, have that worry that you mentioned right off the bat of being overwhelming for people because we have more than 22 programs in there. It's a lot. If you were to try and just read it like a book, I wouldn't recommend that. I would recommend really doing some self discovery work with those four areas of what you need and looking at our section of who's it for, who is it not for, and really finding yourself in those areas and figuring out which ones. And of course, if you can afford it and if you have the interest, you could book a call with me and we could look at this together. But of course, I really wanted there to be a cheaper option for people as well. So we included some prompts in there as well for people to think about when they're thinking about what program is right for them. We also included an FAQ section about brain retraining and small overviews of programs because we know people's capacity for reading with this illness is not always great. And I did an audio version. So if you can't read but you can listen, you can click on any of the programs through that.



00:46:46 Chazmith: I love that. That's so awesome. And yeah, it might seem overwhelming, but at the same time, all those programs exist and if you start doing your own research and looking around and going from one website to the next, that is even more overwhelming. So to have something that's more concise and laid out for you to really have help in, like you said, some guidance in terms of deciding what's most important for you and the prompts to kind of go within and yeah, I see that being a really helpful tool for people.

00:47:19 Lindsay: Yes, I really hope so. I do also believe, though, that with a lot of these programs, it's not even what program you choose. There is no perfect program. It's about how you do it. It's about are you making it your focus? Is it the right timing for it? All these little factors. And that's what we talk about in our call is, yeah, what are you ready for also, so it's so interesting that maybe that would be the perfect program for you in a year, but you're not there yet. Some people are very skeptical, for example, about brain retraining. And even if they were to do a brain retraining program and it would be a lot of, yeah, yeah, sure, sure, sure, and try it a few times and then be like, brain retraining doesn't work for me. And I'm sure people listening can understand how that's not really doing brain retraining. It's a practice. So, yeah, it's a lot about how you do it.

00:48:18 Chazmith: I think that's a really good point that you make, and I'm glad that you brought that up, because it is true there is not a perfect program because there's not a one size fits all feeling is so individual. And I think that is a huge factor in how you show up for whatever you choose and have a level of trust and commitment and all those other important factors, too.

00:48:38 Lindsay: Yes, and a lot of the time when I'm working with clients, they're like, "Well, my gut is telling me I really like this program, but I'm not sure..." da, da, da. And I really try to encourage people to trust their gut because it's something we ignored for so long and if we put faith in ourselves, that alone can be a piece of recovery. I'm not even sure the candida diet, for example, helped me so much because of the diet itself, but that I learned that I could do something like that for three months. I am not usually a person who's very good with sticking to things and there's so many supplements that I tried for a week or ten days and then just stop taking. But the fact that I did this for three months, I was proud of myself. And if you have that approach with a program of you're going to do it and you're going to show yourself you can do it, that also can be a really big factor.

00:49:35 Chazmith: Absolutely.

00:49:36 Lindsay: Yeah.



00:49:37 Chazmith: That's another good point. Yeah, I love it. Lots of great information, insights, even though it sounds like you've had a really hard time through seven years, particularly the first five, and maybe more than that. Every... all the years of master's degree leading into it. But it sounds like what you've learned along the way has been profound and useful and supportive and helpful. Not for you, but for also, many people who are also going to be following in a similar journey. So, yeah, it seems like it's proven to be really supportive despite the not good features of it, of the experience.

00:50:15 Lindsay: Yeah. And even last year, and even in the last year as well, there are setbacks. I'm not saying it's just been a steady upward journey from here, but I do think one of the other things to say is that acceptance. Acceptance that this takes time and that there's going to be ups and downs is such a huge piece of it, too. And it takes time to get there because you're in that desperate, searching, searching, searching state. And I was in it for years trying to find someone to save me, something to save me. But once you accept that, it's going to take time, but you are going to figure it out. You're going to figure it out. And yes, other things are going to help you, strategies and people's teachings, but you're at the driver's seat. I think that is really what's been so huge for me, the acceptance of the journey.

00:51:12 Chazmith: Yeah, I think that's a really good point . Thank you for making that. And also to not compare yourself with other people. Because you do hear these stories where people do heal in six months or do heal in under a year and all that, and it's really easy to go, "Oh, well, what am I doing wrong? What am I not doing good enough? Why haven't I healed yet?" And beat ourselves up when it's just so individual and we're all just on this different, unique path, and it doesn't mean that we're doing something wrong. You sound like you have a very positive, focused attitude towards your recovery. You are openly sharing that it's been two super consistent years that you've been on this upward trend, and yet you still have setbacks and challenges along the way, but you still hold that faith in moving forward.

00:52:03 Lindsay: Yeah. And all the lessons that I've learned along the way, it's so important to incorporate them in your life. Now, I'm so much better at asking for help. If I need someone else to walk my dog because I'm having a rough day. I have people I can ask, and I ask even this weekend has been a bit of a rough one for me because last week I had a lot of clients, and too much Zoom is too much for my brain. That's more of a concussion issue. I also have a concussion, which I didn't get into, but it's okay. It's another thing. But I definitely have had to pace myself again this weekend, which I haven't had to do for a long time, but I did it. I recognize these are the signs that my body is starting to really get unhappy again, and I need to just step back, not go to these events I was going to go to and give myself that space. So you really get better at that stuff over time. Some of it just takes time.

00:53:04 Chazmith: Yeah. And it's great because it doesn't sound like comparing yourself, saying, "Well, why is it taking me two years? And I'm doing all these things?" And I think that's huge. It's just having grace and acceptance for where we're at and trust and faith and to keep moving forward and allow the reality to be that we're all just on our own timeline.

00:53:21 Lindsay: Yeah, and my podcast partners do as well. I would say he's been on his own timeline and been struggling with a lot of gut issues still. And I know it's hard for him sometimes seeing me making this progress, and I wish I could help him more. And it's very hard not to compare yourself. So also, don't beat yourself up for comparing yourself. It's such a natural human reaction. It's such a... mind, this illness.

00:53:52 Chazmith: But the lesson is, don't beat yourself up for any of it. We make mistakes. Some days we're going to have fear, still. Some days we're going to judge. Some days we're going to compare, some days we're going to worry and we just notice and have grace and forgiveness and then redirect and carry on.

00:54:11 Lindsay: Yeah, exactly. And just the metaphor of a puzzle is really helpful for me. Maybe there's just like a few puzzle pieces in your puzzle that are still not quite in place. I still think I'm probably missing a few in mine even though it's getting pretty complete at this point. But there's still work to be done. There always is, really.

00:54:31 Chazmith: Right, so what's your next steps for you, kind of where are you at these days in Q1 of 2023.

00:54:38 Lindsay: Well, for me, now that I'm working, like the last seven months or so, I've been slowly progressing how much I can handle screen time, because I do have a concussion as well. That was one of my biggest issues. This time last year, I couldn't even look at a screen, it was so hard on my brain. Now I can Zoom for a few hours a day max, but it's still working up slowly. The amount of time I can take, those kinds of stimulus.

00:55:04 Lindsay: Last week, I went rock climbing for the first time in seven years. Before I was sick, I was a big rock climber, which is very intense on the body, and I had a tiny bit of a crash even now from going, but not really a crash. I felt symptoms for sure, but I want to work up to the point where I can rock climb regularly again. I do yoga twice a week now, so I want to keep doing that consistently. Last season when I was doing it , I had to miss quite a few classes because it was just a bit too much. But now I'm at the point where I can do it pretty consistently. It really is just pacing up the amount of activity I can do still. And ways that I have consistent practice. In the morning, I get up and I have breakfast. When he has breakfast, my dog, and I do a little practice of polyvagal exercises, which are good for your vagus nerve. I hum my mantras while I do some lymphatic drainage and I do a little bit of a visualization. I wouldn't say I do the whole brain retraining anymore, which maybe I should, although that word should is can be toxic. But I do a little bit of brain retraining, just visualizing what I want to see in my future and then I go for a long walk with Winnie.

00:56:26 Lindsay: So, yeah, I still have a bit of a self care practice, for sure, and it increases when I start to notice my bodies, when I'm doing too much and I need to focus on myself a bit more. So, unfortunately, it's not like you can go back. They say in some programs, 80/20, you can get back to the point where 80% of the time you're doing whatever you want, but 20, you still should be like, eating well, you should be doing self care act. But I think that's good for everyone, really. Like 20% of your time spent focused on you, at least. What do you think about that idea? Have you heard of the 80/20 rule?

00:57:03 Chazmith: In a totally different way? Yes, not in that way, but yeah, I feel like I am worthy of spending 20% of my time on my self care through acts of self love.

00:57:17 Lindsay: Yeah, yeah.

00:57:19 Chazmith: I think that's very important for just overall well-being.

00:57:23 Lindsay: Yeah, definitely.

00:57:24 Chazmith: Having been sick or not.

00:57:26 Lindsay: Yeah, absolutely. But until we're sick, a lot of us don't understand the need for it.

00:57:33 Chazmith: Well, I think also it's a part just unawareness. If you thought about your master's degree days, you might have thought that you were doing that 20% for yourself, but it was just in ways that weren't truly supportive. Like watching Breaking Bad.

00:57:47 Lindsay: Right. Exactly.

00:57:48 Chazmith: Right. So many of us think that sitting on the couch and watching Netflix is like self care. And the funny thing is, it absolutely can be. But it sounds like in that situation, a super stressful, intense show might have not been actual self care.

00:58:03 Lindsay: Yeah. It has way more to do with the mindset you're in. Absolutely. Yeah. For me, going for long walks has always been restorative. But if you're stressing the whole time that you're on that walk, it's not restorative.

00:58:16 Chazmith: Yeah. I mean, I barely turn on the TV, but every once in a while, I want a day where I literally just watch two movies back to back and just lay on the couch and snuggle my dog.

00:58:29 Lindsay: Yeah.

00:58:29 Chazmith: And I watch movies that are just high strung movies. They're not tense, they're not suspenseful. You're not on the edge of your seat, you're not thinking about what's going to happen next. They're rather predictable and you can kind of just be in a --

00:58:46 Lindsay: Lah, lah, lah...

00:58:46 Chazmith: But  I'm making a conscious choice to do that. And I think that there's days that absolutely is what I need for self care. And it's far and few between, but when that urge really sets in, it's probably my body saying, "Hey, I actually just need a little bit of rest. I need a break." Not necessarily my mind, but my body. And then that's okay.

00:59:06 Lindsay: Yeah. So if I can just mention on Post Viral podcast, my podcast with Stewart Brian, we have an episode just about rest and what rest really means because season one is different aspects of recovery that have been helpful for us each episode. And one is about rest specifically, which is different from our episode on sleep because there are two different things. People sometimes just put them together, but it is really a specific thing that you have to foster.

00:59:35 Chazmith: Yes, absolutely. Where can people find your podcast?

00:59:40 Lindsay: On any podcast platform or if you want to go through Instagram, it's Post Viral podcast @postcodeviral podcast. Yeah. So our first season is, like I said, there's twelve different areas, and it's kind of cute because I have an animal analogy for each podcast where I give some animal facts and then we end with a poem by Stewart because he also is a poet. So we incorporated a few of our passions within the podcast and giving people a lot of helpful advice. And then the second season, which is going to be starting, I'm recording my first interview this week, actually. I won't give away who, but it's going to be with experts in those twelve areas that we covered in the first one. So I wanted to get people who really, really are significant in their field and could really give people useful advice in those areas that we covered in season one. And a lot of the feedback we got from season one, it was just about how it made people feel so much less alone and they felt understood. So even if it's not like specific tips you need if you're feeling lonely, I've heard it's a good podcast to feel like you have some camaraderie with.

01:00:59 Chazmith: Nice, awesome.

01:00:59 Chazmith: And how can people connect with you personally?

01:01:01 Lindsay: So there's a few ways on Instagram, I'm @cfsprograms_navigator. But if you want to go through my website, which is lindsayvine.com, that's how you can get to the programs guide and the page that gets all the information on what you're going to get out of the programs guide. And then also there's a page there on my services if you want to do a one to one with me. We do free one to 110 minutes discovery calls first. Also, if you have any questions.

01:01:33 Chazmith: Fantastic. I'm going to ask you one more question because I ask everybody, if you could only share one message for the rest of your life, what message would you want to be your parting message to the world?

01:01:42 Lindsay: One message to the world.

01:01:46 Chazmith: It doesn't have to be focused on healing or recovery either. Just one message that you would want the whole world to know.

01:01:51 Lindsay: I think it's just when you're in a hard time, know that this too shall pass. For me, that saying of this too shall pass was huge in my recovery. And I think so many people get so focused on what's going on currently that they can't see a future. And I never would have believed that I'd be able to progress even to where I am now at certain points. But I kept saying, this too shall pass, and it was true. So I love that saying.

01:02:23 Chazmith: Awesome. Thank you so much for sharing that. I appreciate you being here, sharing a little bit of your story and insights and what you've learned personally along the way. And I just wanted to say thank you again to you and Liz for creating this really awesome support guide for the community. I feel like it's going to be so valuable. So great idea and I'm glad that you guys had this idea and brought it to life.

01:02:47 Lindsay: Thank you so much. I really appreciate that. It was honestly a lot of work and I really do hope it's helpful to people. It's all worth it as long as even a few people get something out of it. I really appreciate it.

01:03:03 Chazmith: Yeah, thanks for being here.

01:03:05 Lindsay: Yeah, thanks so much.

01:03:07 Chazmith: Friends, that is a wrap as always. I hope you learned something new or were in some way inspired by the story that Lindsay shared. Please, if you have not done so already, take a moment of your time to leave a five star review on Apple Podcast or on my new website, ourpoweriswithin.com. And while you're at the website, drop me a fun voice memo so I can hear your voice, too.

01:03:30 Chazmith: And lastly, if you find value in this podcast and you want to be a supporter, you can donate as little as one dollar a month. There is a link in the show notes. And if you listen to the challenge for the week, you know that we are changing up the direction we go in life. So I hope you are being creative and trying something new. Go left instead of right, right instead of left, south instead of north, east instead of west, scenic route instead of the highway. You get my point? Anyways, until next time, make this week great.