Suzi Leach, now in her mid 30’s, was knocked down by glandular fever at age 17 (she had some symptoms prior to that). She was quickly diagnosed with ME. She had up and down periods of health.
Then a bad crash in April 2017, left her fully bed-bound shortly before her 30th birthday. For the next 2.5+ years, she went deep down the diet and gut health route, and tried to perfect her pacing, but still remained in bed.
She was seriously considering doing a coffee enema on the floor, when she found a new path out (the combined effect of three modalities).
She fully recovered by March 2020 and has been well for the last three years, not just physically, but on deeper levels as well.
Written Transcript below:
Liz: Hi Suzi. I’m so glad we could do this interview.
Suzi: Me, too. Hi. It’s really nice to be here.
Liz: Yeah. How was Thailand?
Suzi: Amazing. Yeah, it was definitely a dream come true. And yeah, just such an experience, such a feeling of freedom, obviously, to be able to do it.
And yeah, it felt like a risk to do it, but it was the best payoff.
So yeah, I’m just adjusting to the snow that we’ve had.
Liz: Ooh. So you’re in the UK?
Suzi: Yeah, I’m in the UK now.
Liz: Okay. Well, I’m just honored to be sharing your story. I’ve been following you for a while on Instagram and yeah.
Liz: Did you want to share with the audience your purpose for sharing your story today?
Suzi: Yeah. I mean, the main thing and the reason that I set up the Instagram initially was to give people hope. The hope that you can recover and to be that person and the belief in recovery as well.
It always helps seeing others who have gone through it.
And connection as well. I think that’s really important because it can be so isolating. I felt very alone.
And just to feel somebody understanding your story, you know, there’s so many similarities between what we go through, isn’t there? So, yeah, those things.
Liz: Yeah. Thank you. And did you want to go back and tell the audience how your journey with chronic illness began?
Suzi: Yeah, so it’s quite a long, a long history. So it’s kind of 18 years from when it first started.
So I just turned 17 and got glandular fever, which never went away. And I was kind of lucky enough in a way that my dad was a GP, a doctor, so I didn’t go through, you know, the years of not knowing what it was and having to get a diagnosis.
And six months into that glandular fever and the symptoms didn’t go anywhere, he kind of said, “Have you heard of M.E.?” And I hadn’t.
And I had no idea what he was going on about. And that was the kind of first point that it happened, really. Now when I look back with hindsight, I was having headaches, chronic headaches from 14. So I think that was probably the real first start of it.
Liz: So this happened to you as a teenager. How was it like at school dealing with that?
Suzi: Yeah, so I had my glandular fever diagnosis and went into school like the next day as you do, and you know, typical pushing through it, and was kind of unwell.
But I thought I’ll still go in… and then that was it.
I was completely taken after school after a couple of days, and I was in my last year of high school, secondary school doing my A levels, and I never went back well for that year.
And then through my recovery I kind of went back to finish my A levels, but like I used to get a taxi to school, and I had a mentor at home. And then one of them, I actually just got the notes and taught it myself. Typical achiever.
So yeah, it was…it was hard because you know, at that age, my friends didn’t really understand.
They had no idea what was going on. I didn’t have any idea what was going on. I’d never heard of it before. And yeah, it was really hard and very isolating.
Liz: Wow. So you gave me some idea, but what were some of your key symptoms and functionality levels in the first years?
Suzi: So I was completely bedbound.
I would go downstairs in the evenings and kind of watch TV with my mum and dad, but you know, there were times when I’d have to crawl back up the stairs to get to bed and all that kind of stuff.
So it was the fatigue, the post-exertional malaise, headaches, which would, like I said previously, were a key thing of mine, sore throat, noise and light sensitivity, temperature regulation not working properly. So, yeah.
Note: If you continue reading, you’ll see she had some reprieves, but by 2017 was fully bed-bound, and only able to go to the toilet (before ultimately recovering in 2020).
Liz: So you said your dad is a GP, so did you see any specialists or any doctors, and what did they tell you, or did they give you any treatment options at the time?
Suzi: So, I was referred to the local ME / Chronic Fatigue Syndrome service, which to be honest, I don’t know if they still exist or not, but at the time, the information that I was given was very much just around pacing.
Like that was it. It was an energy management condition, the whole boom and bust cycle.
And I remember, I think I’ve still got it somewhere, I’ve been given this [pacing] leaflet of like, “This is how you do it.”
And that was it really.
My dad kind of….you know, there is no treatment togive, so I imagine he felt very, very helpless. And he was able to kind of give me certain medications for things to help with sleep and stuff like that.
But it was the pacing thing. It was like, “Here you go. Go away and do that and see what happens.”
Liz: Yeah. So it was just managing it. And did you ever go the alternative route at some point?
Suzi: At that time, no. So I was basically ill for a couple of years and improved, like I said, enough to finish my A levels.
Suzi: And then I went to uni and I was kind of okay, but I always had headaches and digestive issues and sore throats and sleep problems and things like that.
Which, you know, I didn’t really think anything of it, like the fatigue had passed. So I went to uni, but I did struggle a lot with what I probably would now say is depression. Having experienced that isolation when being first diagnosed and first ill and bedbound.
And then from the age of 23, I relapsed again.
And so until I recovered three years ago, that period from being 23, I would relapse and remission basically.
So I would get to a point where I was maybe able to work a little bit and then eight months, 10 months later, I would fall ill and be completely bedbound again.
So that happened about four, five times and it was kind of the last two times that I’ve gotten more into the holistic side of things, which obviously having a GP for a dad was…um, was not the route that I would’ve, you know, gone down.
So, that was kind of all off my own bat, and yeah, there’s a lot of things that I tried over the years.
Liz: Wow. So what triggered the relapse at 23?
Suzi: So I think the way I was, the lifestyle, I was perfectionist, achiever, put so much pressure on myself, low self-esteem. I was working in a job that I didn’t really like and would never stand up for myself, was very disconnected from myself.
It was just that element of all of those things, and it kind of came out of nowhere a little bit. So it really threw me.
Liz: Yeah. It sounds like looking back, you can see how it was building. And all of these, the emotional states that now we know are connected as well, and not speaking up for yourself, a job you don’t love, and dealing with the depression of the illness itself and being isolated and missing out on a lot of those key moments as a typical teenager would have.
Suzi: Exactly, yeah. And one of the kind of key stressful things was I moved flats with a friend and it completely went wrong. Like I thought she’d got the keys and done all the whole exchange, and she just hadn’t. So all of a sudden we were thrown out of where we were living and had to move all our stuff into storage.
And so that was like this stressful period, and I was working a couple of jobs, and yeah, it was just a lot of pressure.
Liz: Yeah. Oh, and moving. So after this relapse, were you more housebound? What was your functionality then?
Suzi: So I was mostly housebound, but bedbound as well sometimes, but completely housebound, which was really difficult cause I’d just moved into a flat in the city center and all of this stuff going on around me and in my early twenties and getting to that point of, you know, really living your own life and was just back in bed.
So yeah, all the similar symptoms again. And yeah, that went on for about… it’s hard, because there’s been so many, I’m like, how many months?
That one, um, that I think it was about 18 months, two years, that I was really housebound, and then kind of saw an improvement over time, and I was able to work and then.
Liz: So you have this independence, but you’re really working on a job you don’t love, and then what independence you did have is kind of taken from you, because I assume you weren’t able to work then for the those 18 months?
Suzi: Exactly. Yeah. So yeah, I applied for disability benefits fortunately with the help of my mom and dad, but I ended up having to move out of the flat after six months.
Liz: Did you have to move back in with them?
Suzi: Yeah. Yeah.
Liz: Wow. That is really tough. And when your friends are partying and drinking at 23, that’s gotta be tough.
Suzi: Yeah, definitely. And you know, people don’t really understand you either. They don’t.
They kind of see you and are like, “Oh, you sat up on the sofa…do you wanna come out?”
And you’re like, “Yeah, I’d love to” (jokingly). (We both laugh.)
Um, and yeah, they didn’t really get it. So when, yeah, my flatmate had friends over and stuff. It was, it was hard.
Liz: Yeah. Like “You sat up…” Totally. Ah, yes. Many of people listening will sadly relate.
Liz: But, alright, so I want to start now talking about what things you started to try that maybe gave you glimmers of hope or maybe things that gave you glimmers of hope and then didn’t work.
Because I assume now you’re like, okay, you tried the regular medicine route, maybe you’re trying other things now.
So the first thing that I tried that was more holistic lifestyle was cutting out gluten.
And I really made that connection with that, and it did seem to help me a bit. So that’s something that I have maintained, yeah, throughout.
But I was kind of convinced that was it, that was the answer.
It was, you know, maybe I’ve got this undiagnosed celiac disease and that’s just how my body responds. So that became the biggest thing.
And then I kind of got myself to a point where I was able to work a bit again.
Suzi: And then when it happened again, I saw a specialist who kind of confirmed the worst, if you like, and said, “You have a relapse and remission type of this illness. This is going to happen to you in life.”
So it was like, whoa, okay. Like, A – I’ve never, literally never heard of that before, like this special type of “relapse and remission.” And she was a specialist, but again, there wasn’t really much help.
She told me to be very, very cautious and wary of doing any exercise, even yoga and which, obviously, we know if you do push and everything, there’s a certain point where exercise might be difficult for you.
But yeah, it completely put the fear in me, and I think at that point, fear became my biggest issue.
And because it kept happening again and again, every time it would just be put into this pit of despair, and the fear would be the thing.
So, after that, I then started going more down the meditation and mindfulness and using those strategies in that way to come back closer to myself and also be calming down the nervous system and using those kinds of tools.
And because I’d made this connection with gluten being a thing, I was then very much into the diet and went down the supplement route.
Liz: So that’s similar to me, too.
So you talked about two different things. You talked about the mindset piece and the diet piece.
Liz: And I think that’s a very common first intro into the holistic world. So what diet changes did you make?
Suzi: So when I first got into it, it was kind of like clean eating and that kind of thing, which I’ve always had a healthy diet, so it wasn’t huge changes, but it was just more kind of awareness of like organic food and low sugar and whole foods, all that kind of stuff.
But it was the supplement route that I kind of… I read a book, I can’t even remember which one it was, and I didn’t even consult with anyone. I just bought all these supplements and just did it all myself and then found that I kind of recovered. So as soon as you have a thing, you pin it on that, don’t you?
I feel like what was probably going on for me was an element of the pacing, you know, resting cycle, working in essence.
But every time I tried something, I feel like it was a bit of a placebo effect, and it got me to a point.
And then I got to the point where I was like, “Right, I’m just gonna have to live my life differently.”
I have this condition, and I just have to manage my energy in a way. Maybe I’ll never be able to work full-time. So I kind of adjusted my life so that I worked for myself. I like left my job and then was like, I’ll work freelance.
So that’s where I was at when this worse relapse happened where I was completely bedbound, like only able to walk to the toilet for two and a half, well over two and a half years.
Each time I relapsed, it was worse each time. And that was the worst.
Liz: So what triggered the worst relapse?
Suzi: So it was a whole host of stress, as it always is. I mean, you know, on top of the years of perfectionism and all that pressure and the general experience of illness as well. So I got married, which was obviously a good thing a nice thing, but then we…
My husband’s dad had a heart attack. Fortunately, you know, he’s, he’s okay. He had an operation, but we were driving to the hospital every single weekend, you know, picking his mom up and taking him somewhere else and, you know, all of that. We were also trying to buy our first house. So looking at that and, you know, moving.
And then we were also planning a trip, which was kind of our honeymoon trip that included Thailand. It was the first time we went for six weeks, and it was just all of these things all at once. And just typical me of like putting all of the pressure on and doing a lot of it myself, and also trying to build a freelance career.
So all of all of the areas of life.
Liz: Yeah. So did you feel like…it sounded like you felt like you had a make up for stuff. Like, okay, now I have more energy, now I need to make up for not being there, not having the career.
Suzi: Yeah, absolutely.
And it was like every time I improved enough it was like, “Right, I’m not wasting any time because I’ve spent all this time in bed, and I don’t wanna look back on it or feel sad about it because I’ve got this opportunity again to live.”
So, you know, it was literally a like all guns blazing every time.
Liz: I’m gonna plan this amazing trip. Take care of everyone. Build my career. And in the back of your mind and your subconscious, that doctor had told you, “This is gonna relapse. You have to be careful.”
Suzi: Yeah, exactly. And as soon as you feel like an inkling of a symptom, it was like boom, right, this is it for the next however many years I’m gonna be ill for.
So yeah, we did go on the trip and we did move house. We ended up buying a house and moving everything into storage, and then moved in with my mum and dad.
And I picked up some freelance work that I didn’t really want to do.
So again, going against my needs, my desires, and we had all this stress of decorating the house, and yeah.
It was over Easter weekend actually, and we were decorating, and it just, I came back to my mum and dad’s and was just you know, it’s like a veil, isn’t it? Just comes over you. And it was like, “Nope.”
So I tried to push through and then.. and then that was it for the next three years.
So it was 2017 until 2020.
Liz: Wow. So that must have been tough for you, for your husband, now that you’re kind of at your rock bottom?
Suzi: So, I mean, it took a little while for me to get even to my rock bottom.
So I kind of went through all of the diet stuff. So I tried Dr. Myhill’s – a keto diet.
Liz: So you think, I cut out the gluten, now let’s do an even more intense diet protocol.
Suzi: Yeah. Found that really intense. I tried Terry Wahls’ MS, multiple sclerosis, her diet, which is the most amount of veg I have ever eaten in my entire life.
And I like vegetables, and it was a lot of raw, raw stuff and trying to get like 30 different types of veg in one meal. And it was a lot. I tried Paleo, tried cutting out sugar completely. No dairy.
I was obsessed at that point with gut health.
Like I thought it was gut health because the supplements I felt had worked previously, I then was like, “Right, okay, well it’s that.”
So then I went into probiotics and doing anything I could to help gut health and I saw three nutritionists over the time, a naturopath, one of them, and she did more kind of functional medicine tests on me from my bed, looking at hormone levels and all that kind of stuff, and put me on all these supplements again that were more tailored to actually what came up.
And none of it did anything, to be honest.
Liz: Interesting. So in the very beginning when you tried supplements, it had that effect. It might have been the placebo, it might have been a boost from the supplements. Now you see these naturopathic specialists and you take all these custom supplements, and you’re still in bed.
Suzi: Yeah. I try and kind of think what, you know, were…were there any improvements? It’s hard to kind of tell when you’re just so… in bed.
Liz: There’s so many of us who tried… we bought a billion dollars worth of supplements. And there was a time where I thought these were gonna save me.
Or because I had that boost, I’m like, okay, I’m gonna keep taking them. Because what would happen if I didn’t take them?
Suzi: Yeah, yeah, exactly. There’s no question that it’s important to be a healthy person, but I’d always had really had that. I’d always had a healthy diet.
Although some of it was quite drastic at times, overall, it wasn’t like I was changing loads, you know? I wasn’t going from like a really high sugar, processed foods diet to the complete opposite.
But yeah, it’s hard when something’s worked before, and then you don’t see the same thing from it.
Liz: Yeah, and the whole microbiome route. I was right there with you with the probiotics.
I tried ’em all, all the different strains.
Suzi: Yeah. Oh God. When we were still living at my mum and dad’s, my husband, bless him. We’ve got, water kefir like, you know, there’s like milk kefir, but then you can get water kefir grains.
And we were growing kefir in my bedroom… it was so weird.
And then he made, oh, what’s it called? Kimchi in my mum and dad’s fridge. And the smell of garlic did not go for about three months.
So we had it all going on, you know? Yeah. My mum and dad must think I was nuts, but you’d do anything, right?
Liz: Oh yeah, yeah. The garlic. I had the turmeric fingers, the orange hands from the tumeric, yeah. All of it. Oh, that’s great.
Liz: Alright, so you had mentioned earlier that mindfulness was helpful. Were you meditating or doing any mindfulness throughout this? I mean, you’re in bed, there’s not much to do except sit with your thoughts.
Suzi: Yes. Yeah, I did a lot of meditation and to be honest, that’s my savior is what got me through.
And because I was very much in the pacing mentality, I would literally do an activity rest, do an activity rest, but my rest would be full on eye mask, headphones, corpse pose yoga sort of thing.
And at one point, I think I was meditating like five hours a day using Insight Timer.
Yeah, and I mean you might think that you’d get to zen-like state.
But I realize now when I look back on photos that I’ve got of me in that kind of state, I can see the fear that’s in my body.
I can see that it was very much like, “I need to rest, otherwise, you know, I’ll crash.”
So I had just a lot of fear, a lot of fear throughout the whole thing. And because of what had happened, and you know, nothing seemed to be working, you kind of… you know, you’re going through all the options of what’s to help what next.
Suzi: There is just a lot of fear around it. And with pacing, I, I would give myself a number for each day of like rate my symptoms, and at one point I had kept a diary so that I could try and spot patterns or if I’d eaten anything or anything like that.
And you know, at one point I was literally writing down, “I bent down to pick up a laptop.”
“This is how many times I went to the toilet.”
It was literally, like I moved my finger, and I would write it down as being an exertion.
So it was just, just a lot of fear.
Liz: Sorry, I’m laughing. Oh my God, that’s so terrible. But that you were going through this, you were writing that, you moved your finger.
Suzi: That’s okay. That’s how much much it was.
Liz: Yeah. But I mean, I do wanna say, because it sounds like in the beginning, pacing can be helpful, but the fear that is as associated with it, the way some practitioners describe it, actually can be really harmful, especially if you’re already type A and as you said, a perfectionist.
Liz note: I do want to acknowledge that some people (Type A or other type) may be aided by a strict or regimented pacing approach and that many people benefit from pacing in general. I think it depends on the individual and what point you’re on in your journey. I also think how it’s conveyed matters – ie “you must count every step and spoon, never exert, and never get your heart above X beats per minute, or you’ll get worse!” vs “slow and steady wins the race.” I think what Suzi says here is such an important message.
Suzi: Yeah, absolutely. And that is my whole kind of…problem. I mean, problem is probably a bit of a strong word, but problem with pacing.
Yes…the kind of staying within your window of tolerance and not pushing yourself more than you feel you have the capacity for [makes sense].
But it was just so much fear, and like you say, perfectionist. I became so controlled and so rigid over it.
And it wasn’t helping because I was still there in bed.
And, if anything – it just made me more and more scared.
Liz: This is like so relatable, and I’m like, it’s like terrible, but I’m laughing.
Suzi: No, no, it’s, you’ve gotta laugh, right? Cause you do look back and you’re like, “Oh my God, that’s so crazy.” Like the diet stuff, just, yeah, it was mental.
Liz: I had bought a fermenting kit, but I never got around to it because it was right before we realized there was mold in our house.
So I bought this kit, and I was like, “Oh, it was in the moldy house.” And then we left the house with nothing. Yeah. So, but I had aspirations to be a fermentor myself.
Suzi: Yeah. I mean that (kimchi) jar was just so weird. It’s like, and it wasn’t even like I could do it. My husband was doing it for me. It was like, that’s awesome.
He was just doing anything that would get me better.
Yeah, the lengths that you go to. Like, I can’t believe how much kale I consumed.
Yeah. And yeah, just raw turmeric in every hot drink and yeah.
Liz: Yeah, there was orange everywhere. I went through a turmeric year and a half.
Suzi: Oh God. And then I got on the whole celery juice thing as well.
Liz: Oh, Medical Medium.
Liz: Yeah. A lot of people, I mean, mixed reviews on that one, like people say it can help with the viral loads, but it also has oxylate in it. But I mean, it’s better than drinking Starbucks in the morning.
Suzi: Yeah, true. Very true. Yeah. So yeah, I had that. And then like my smoothie with all of these like nuts, seeds, protein powders, all of this stuff, just like forcing it all down.
Liz: Yeah. It can be so stressful because the diet advice is so contradictory. For instance, Chinese medicine is like “eat warm.” And then this other stuff is like, “eat raw.” Yeah. And so I’m like, ugh.
Suzi: Yeah. And you know, Myhill’s like the keto diet, eat like all meat, you know, every fat and all of it was… I hated that.
It was horrible. So much coconut yogurt and nuts. It was like, “I can’t!” Like, I love fruit and veg, I always have. So it was like, I can’t eat the things that I want to eat.
Liz: But not the 30 vegetables in the meal, like the other Terry Walls protocol. That’s a lot. She does have a nice garden. So it’s probably easier for her.
Suzi: Yeah. And a really nice sauna.
I was always like, I need to get a sauna. How do I do this?
Liz: Yeah. Did you ever do the sauna at any point?
Suzi: No, I looked at getting one of the blankets that you get, but.
Liz: The infrared blanket?
Suzi: Yeah, yeah, but I, I kind of found brain training and that stuff before I…
Liz: Okay. So how did you find the modality that would help you the most?
Suzi: So I came across, I think it was DNRS first, the concept of brain training, which I don’t even know how I came across it.
I was very much looking at a lot of detoxing roots.
My husband did a coffee enema for me, like on himself, to see if I was physically able to do it on the floor.
Um, which he did. He had a great time, and then I never did.
So yeah, so that’s kind of what I was looking at. And then somehow I just came across DNRS, ANS Rewire, was looking at Gupta.
I think it was actually my dad had sent someone an email who had done the Lightning Process, so maybe it came from there.
So much research, it all kinda goes into one. But yeah, I remember looking at, I was looking at DNRS and ANS Rewire, and some reason decided to do ANS rewire, and that was kind of that first foray into that world, which yeah, was huge.
Was the thing that kind of… so I started it and was very severe at that point and was crashing a lot, had a lot of post exertional malaise.
And I was such a perfectionist when I started doing it and all of the fear and was just, “Am I doing this right?”
You know, all of those kinds of thoughts. And for the first couple of months I went very slow with it.
And I was conscious not to overwhelm myself, but I, because of that perfectionism and that mentality, I didn’t really see many benefits at first.
And then when I got over that (perfectionism), I kind of relaxed a bit.
So I had really bad light and noise sensitivity. And the light sensitivity went within about three weeks.
And, you know, I would have the curtain shut, eye-mask on, like sometimes I would have to have sunglasses on in the house, even with the curtain shut. And it just, it went.
Liz: So ANS rewire, just going through that [resolved your light sensitivity]?
Suzi: Yeah, so I was going through those videos. I didn’t know anybody who was doing brain retraining at the time.
There’s not really a huge community as part of that program other than like a bit of a forum where people, ask questions. So I didn’t know any, I wasn’t like in conversation with anybody around it. And yeah, it got me to a really good place. It got me going out once a week, so, well, my husband started carrying me outside into the garden at first.
That was the first thing, and I would have my wheelchair and we like suddenly had this escape moment to the park where like we were outside and it was like a really sunny day, and I just thought, “I really wanna go to the park.” So it was like, well, you know, in the kind of brain training world, “Why aren’t I going to the park?”
So we literally just left, like doors were open. We didn’t have any keys, I didn’t have any shoes on, I was in the wheelchair.
We just went with the aim of going to the end of the road and then we ended up going around the park, and I just like, cried my eyes out and was probably beaming at all of the strangers like a crazy person.
And I didn’t have any PEM after these little trips out. So it just gave me that confidence.
And with doing that, I got to the point where I was going out pretty much once a week, maybe more in the wheelchair.
Um, I was coming into this room actually, which is next to my bedroom, coming and sitting up on the sofa, doing coloring, reading, lots of different exercises, seeing my mom or seeing people a bit more, having people coming around, literally not having able to do any of that.
I [had been] completely bedbound, you know, could couldn’t really sit up very much.
So the fact that I was sat upright on a sofa was, you know, like big.
Liz: You had said “exercises.” So what types of “exercises”?
Suzi: So from being bedbound for so long, my leg muscles were obviously really weak, so I had some books, and I would like step up onto them and do that.
Just like really small little things and kind of moving the lymph around and kind of arm movements and stuff like that.
Suzi: Yeah. And I would do little bits of yoga in bed, but not real yoga, just like lying on cushions or kind of doing a little bit of a bend forward and things like that.
Liz: So what components of Dan’s program (ANS Rewire) helped? Was it just the knowledge that this was your nervous system? Was it his holistic advice and or was it his rewire steps? I know there’s the brain retraining script, which is an acronym for REWIRE.
Yeah. But so what components helped, you think?
Suzi: So, definitely the education around this is the concept of what’s happening to you.
It just made complete sense to me because throughout the whole time I’d been unwell, you know, so many years, well, my whole other life, up and down. I never thought that something was biologically wrong with me. It just didn’t make sense to me because it was like, if there was something wrong with me at a biological physical level, then surely you would never improve.
So it just really resonated with me. And the technique itself, the rewire technique and the idea of a future really helped.
There’s a whole video on “dare to dream.” And that’s something that I kind of was always in my head, still like dare to dream about a future.
And I just remember like crying my eyes out when I watched that video cuz I thought, “This is it. I live in four walls now. This is gonna be my life.”
And someone was stood there saying, you can dream about a future.
And that to me was so powerful. And, you know, I did dare to dream, and I wrote a list of the dreams that I wanted to, the things I wanted to do when I was well again.
And, you know, the reason that I was recovering beyond just getting rid of symptoms or not being unwell anymore, I think that’s a real important part of recovery.
Understand what your motivation is around it and what are you living for? And I’d never in my life even thought about that.
I didn’t have any dreams. You know, I was so disconnected from myself in the past and that was a chance to do that, so I took it.
Liz: Oh wow. That is so powerful.
Yeah. And “what are we doing all this for?” and daring to dream. Wow, that’s so beautifully stated. Yeah. Dan’s a great guy and he has a wonderful program.
Liz: Yeah, so I remember that when that doctor had told you, “Oh, this is a relapsing condition, but now you’re looking at it, “Oh, I was able to improve before. That means that I can fully improve.”
Even though you had just been bedbound, you’re like, okay. I was able to improve before. And it sounds like there was a shift, it sounds like before, it had been looming over you, the relapse, but now you’re looking at the possibility.
Suzi: Yeah, and I think that’s one thing that really helped me get through it, because I had improved before, so I knew that it was possible and I lost a lot of hope because I was so severe and I was much worse than I had been before.
Nothing was helping, but I still had, “but I improved before.” And the fact that, you know, I watched recovery interviews, I saw people recovering and it was like, “this is possible.”
And because I had so much fear and because I had so many rules and so many rigid rules around pacing and all of that stuff.
It just made sense that I was constantly triggering my nervous system all the time, and I could feel it as well.
You know, it felt like nervous system activation in me. I would feel the adrenaline, I’d feel the…I had neuropathic pain in my legs and it just felt like I was on, and in that sympathetic state.
And, you know, five hours of meditation, it really helped me, but it was obviously not the only thing that I needed.
Liz: Yeah. All right, so you’re seeing these major improvements with Dan’s program.
Did you try any other programs after that?
Suzi: After I kind of got to a bit of a plateau with the ANS Rewire….
I, like I say, was going out, which was amazing.
But my husband was still carrying me down the stairs. I was still in a wheelchair. So yeah, I was still very much, very limited. And you know, he’s obviously working full-time, so I was limited to when he could take me out and carry me down the stairs.
So I started doing Mickel therapy, which I’d heard of a couple of people, a couple of friends who tried it and recovered.
So I started doing that. And alongside it, I was also using the Curable Health chronic pain app, which is a mind-body approach, uses brain training, journaling exercises, education again, and then meditations and visualizations. All about the nervous system, all about suppressed emotions, and Mickel therapy was very much in line with that.
Liz: Yeah. I’d love to learn more about Mickel therapy. I’ve heard about it before, but what, what does it involve? Yeah.
Suzi: So I still struggle to kind of explain it, and I do feel like it’s almost a kind of, of a magical thing that happened (laughs), but it’s very much about your emotions and understanding symptoms as messages that are coming from your subconscious mind.
The whole field of psychoneuroimmunology. It works on that principle that the emotions are messengers and when we ignore them, it’s sending alarm signals in the hypothalamus.
So it’s still very much linked around the nervous system, but the key thing is the emotional brain. So you are not looking at symptoms as the thing to fix, it’s what’s behind the symptoms, so the emotions that are involved.
So it is very much about understanding your needs, standing up for yourself, boundaries, connecting with your true self, who you really are, what your desires are, what your wants are.
And then also very much around fear as well, which is one thing that really resonated with me because I had so much fear, it really allowed me to, it just removed some of it for me.
Liz: So how do these sessions work? Is it like a hypnosis or is it a chat that you have with a practitioner, or is there energy work? I’m just curious.
Suzi: So it’s just a chat. It’s just a chat with your therapist, and they explain the approach to you and all of the kind of theory behind it, and they give you these three keys to work on, kind of questions to ask yourself when you get symptoms.
So it’s like, “Am I being treated unfairly?” That’s one. And a key one. “Am I meeting my needs?”
It’s very much about meeting your needs and “Is this fear?”
If you’ve wronged somebody, you’ve make yourself feel guilty from the thoughts that you’re having. So it’s again, around mindset and thoughts. So the sessions work that once you’ve kind of understood that, you look at where your symptoms are coming up and what might be going on. So you literally, it’s really good in the sense of you get to talk about you one-on-one, this is what’s happening to me on what might that symptom be there for.
So initially, a lot of the time it’s about boredom and obviously three years in bed, I was very bored, so my needs weren’t being met in any way.
So it was about looking at bringing more joy, bringing more excitement, bringing more creativity, like meeting the person that I am, and beginning to bring some of those things back into my life.
And yeah, it sounds kind of like, why would that work? But it did. And the way that I understand it now, like if you are stuck doing an activity, there’s all sorts of things that can be going on that are subconscious, like “I’ve just gotta get to the end of this activity because I’ve gotta finish it.” Perfectionism.
Or like you’re in a social situation with someone and you kind of stay longer than you want to, because you’re trying to please them. So it’s like, now I understand it as they’re the things that were triggering my nervous system and part of like between activities, it would be like, okay, right, just shake off the thoughts that you’re in, shake all that stuff off, which again, is nervous system regulation.
So looking back and what I understand now, all of that was kind of going on without me really realizing it.
Liz: Yeah. And we just label it as, “Oh, I overexerted.” But when I think about it, that time, I was able to go out to that one party and I talked to those people that I didn’t wanna be talking to, and I felt like I needed to prove myself with talking about my job or whatever and felt not good enough cuz they had a better job or whatever.” It wasn’t (just) staying out too late. It was that emotional component.
Liz note: During the bulk of my own CFS journey, I had to give up my job, and I rarely was able to socialize. And my “late” was after 9 pm.
Suzi: It’s all the things going on underneath and the way that you aren’t meeting your own needs. So a big part of it for me was connecting back to my true self.
So I was really disconnected before, real people pleaser.
I had always done things because it was expected of me, or it’s what I thought I should do.
It’s what I thought people like would like me for, you know, all of that.
That’s how I’d made all my decisions in life and it just really made me explore, who am I?
What do I want out of life? What do I enjoy? You know, again, why am I getting better?
What are the things I’m getting better for? If I had a day and if I woke up tomorrow and I was healthy, how would I spend my day? I couldn’t answer that question before. It was like, “Mm, go shopping.”
Whereas it was like, “Okay, I’m bedbound. What would I do tomorrow if I could?” And so it was a real exploration of myself. Yeah, there was a lot of components of that.
Liz: I do wanna get into that because it’s like, okay, well what should I be doing? I don’t even know what I love to do. Was there any stress in the idea of, okay, what do I love?
Or was it just like you were guided and then it was a beautiful exploratory process?
Because we had also talked about fear and there being fear with doing what you love as well. So can you tell me more about that process and discovering what you love and how, how that came about?
Suzi: Yeah. Well it’s funny that you say like the fear that can be around what you love doing and purpose, because for those first couple of years of that (2017) relapse, I was so obsessed with finding out what my purpose was, even though I was so ill and I was convinced that like if I just knew that, then that would…you know, it was gonna help me.
So I’d kind of already thought about it bit, but it was all the things that I’d been entertaining myself with.
So, you know, I would watch little arty videos on Instagram or whatever of like painting or embroidery, crochet. And then I would also watch, I got really obsessed with this vlogger who was a travel vlogger. So I would basically travel a world like through his videos.
So journaling really helped me as well because I did a lot of journaling and I really went back to what did I enjoy as a child, you know, when do I feel most me, just asked myself a lot of questions and I just tried things.
You know, I was doing bits of colouring and I love reading, and so I would expand that kind of creative thing.
And so I started drawing, I started knitting. I started doing embroidery. It was just like it’s anything to break myself out of the pattern, the thought pattern in the brain space, the state that I was in, and anything that could distract me and distract my thoughts from the fear that I was feeling.
So yeah, I just let myself explore and enjoyed doing it.
Liz: Oh, that’s wonderful. Yeah. All right, so you’re finally seeing progress. You’ve done an ANS rewire and you learned about the nervous system’s role in this, and now you’ve learned about the emotional component of it as well, and I think they can go together.
I know in brain retraining it’s more just a false messenger or an overreaction from the nervous system, but it’s kind of beautiful seeing that the emotions and the symptoms as messengers for these emotions. Yeah. So what was next then on your healing journey? After the Mickel therapy?
Suzi: Well whilst I was doing those things, I mentioned the Curable Health app, so I was doing a lot of exploratory work around my past and past trauma and what the causes of stress in my life, because you know, we all know it’s the perfect storm of all of this.
It’s usually just this whole load of stress and everything that I now understood about the condition with the nervous system and the emotional side of it.
So I did a lot of soul searching and trying to process those emotions. And I would say, because this fear has just kind of ruled a lot of it, I got a bit obsessed with, “There’s some hidden secret emotion that I just need to process!”
You know, process the trauma, and it’ll just unlock everything. And you know, there’s John Sarno’s work, his book Healing Chronic Back Pain, the stories of people who get suddenly magically better just from reading the book and people would like have this big emotional like explosion where they suddenly express their anger and everything just turned off like that.
So I kind of got a bit obsessed with with that, which, you know, again, the whole pressure that I put on myself. And all of that went a bit, a bit full on with that should we say.
But it also really, really helped me understand where my coping mechanisms like perfectionism, achieving where all that came from.
And it got me to understand my limiting beliefs. You know, I was like a detective, if you like, of anything where I wasn’t feeling safe.
And yeah, it uncovered a lot of things I kind of didn’t really know or give much thought to. And so that helped in that way as well.
Suzi: And it was like just this culmination of all of those things.
I started doing Mickel therapy. Within three weeks, I walked down the stairs for the first time in like over two and a half years, and then it just really snowballed really quickly from that.
And I was doing all these, lots of different activities, you know, my life suddenly started filling up, and I did start going out, went out of the house more.
But it was the connection with myself. Like I was doing all of these things around the house. And then when I was able to, I was able to do things like make of tea and like do a bit of washing up, and just feel more normal, feel like I was just coming back into life more.
And then I, I just really believed in it.
I really had nothing to lose.
I’d hit rock bottom and then in a really dark place, and it was like, “I have nothing to lose, and this is working for me, so I’m going to go with it.”
And, you know, I was rewiring all the time. Like when I went out, it was literally like, I remember we went to see a film and I was like, what did I even just watch?
Because I was basically rewiring all time. Um, at the beginning, at the beginning.
And yeah, I went from, it just, all of these things kept happening. Like all of these firsts, you know, I walked down the stairs for the first time, and then I walked out of my house for the first time, and then I went for a little walk to like halfway down the end of the road on my own, which was like, “Oh my God, I’ve left the house on my own, like, what is going on?”
And I made sure that I celebrated it every single time, which is a really key bit of ANS rewire. It’s about giving that evidence to the brain that you can do it.
It’s about making this new pathway that you are not ill, you are not someone who is gonna be stuck in bed. You can do this, you can do it.
Suzi in late 2019 at a concert with her husband, brother, and sister-in-law.
I really celebrated that as much as I could, and I would have the Rocky theme tune.
That was my thing. Like my husband would play to me.
I’d do it out on a walk with my headphones on. And I’d gone from being in bed and needing these headphones for noise sensitivity and having this really like, dreamy, theta waves, alpha waves, music to calm myself down.
And there I was like, Rocky theme tune, like wooyeah.
So, and then I really took on bored with brain training.
The intensity of the emotion is important for the brain as well as consistency. With neuroplasticity, the intensity of the emotion is important. How much you feel that joy or whatever it is, it makes that connection stronger. So I’ve kind of really tried to ramp it up in like how good it felt. And then gratitude.
Gratitude was a big thing for me throughout my whole journey.
And I would just keep making lists, keep focusing on what I was grateful for. Like I used to write it down at the end of every week, all the things I’d done, however small they were. You know, at first it was like I washed my face, stood up at the sink, I shaved my own legs.
There was a lot of shaving my legs in bed that my husband did with his beard trimmer.
So yeah, anything I would write down and celebrate because, yeah, it gave me motivation and it spurred me on, but it was also giving evidence to my brain.
Liz: Yeah. I did that, too. And I mean, it started with the littlest things, which is also gratitude for like, who I was grateful for. But yeah, and really the thing that I’ve heard over and over and it, it seems so small, but consistently documenting what you’re grateful for and what you’re proud of yourself for.
Suzi: Yes. Yeah, absolutely. What you’re proud of yourself for and yeah, it’s, for me, it was one of the first things I did when that severe relapse started, and I was still at my mom and dad’s. I had this little book and I wrote down, you know, the three things I was grateful for every day.
And that really, really got me through that really difficult two years because it made me refocus on, you know, what was bringing me joy in the day, and that there were still these little moments that I could be grateful for even though I was bedbound. And I think that mindset can go a long way.
Liz: I also did that and it was three things or, usually about three things.
And then like looking back on those journals, do you still have some of your old journals and you like look back, and you’re like.
Suzi: Oh my God, I’ve got a stack like this. It’s like all of the journaling I did. And, you know, I would even, I would write like achievement lists of my whole life and trying to like build my self-esteem, and I would write everything I’m grateful to this illness for so far.
And, you know, just these lists of everything and you know, not stopping at three things, just really trying to help myself out, stay strong, focus on the positive, rewire my brain in every capacity to believe.
And that’s what it was about. It was about self-belief. It was about belief in recovery. It was self-belief in what I was doing.
And you know, it gave me something positive to focus on rather than lying there in bed and thinking how terrible it was.
Liz: This is such a powerful story and it’s so relatable too, cuz there were gems and there was magic happening and sometimes it’s all not at once.
It’s in this beautiful process.
Suzi: Yeah. It mean it felt like, it really felt like it just snowballed and that was like, I just couldn’t believe it. You know, from how ill I’d been, whenever I’d recovered or improved it, it had always been a gradual thing. And when I started doing Mickel therapy, bearing in mind, I’d been brain training for a year.
Suzi: Within four months of doing Mickel therapy, I didn’t use my wheelchair anymore.
Suzi: So I went from weak to like building my strength up really quickly, which was amazing. And I was just amazed by what the body could do as well.
Liz: Yeah. When you start being able to rebuild your strength, it’s such a beautiful experience.
Just remembering that part. When I started with the small walk and then it was like five laps in the pool
Liz note: Last week I got a Facebook memories notification from April 2019, and I see I started with a 300 meter swim in my community pool. I remember it felt easy, as I’d been brain retraining for several months, and had been building up my stamina through walking. I eventually got up to 1000 meters.
How did that look for you? So you were able to go outside now on a walk, and did you do walks or did you do an activity you loved?
Suzi: So I would go up and down the stairs. At first, I would have to hold onto the rail cause my legs were so weak.
I would hold onto the rail of my arms, and then in the end I kind of ended up going down on my bum until I was able to build the strength.
And it, I wasn’t like, this is because I can’t do that, and it’s too much if I walk downstairs. It was literally down to my physical strength. But yeah, we would go out in the wheelchair, and I would get up and walk, you know, 50 steps or whatever, and then sit back down again.
I just did it like that and just built it up. And as soon as I had the strength in my legs to walk, I did.
See Suzi’s first steps in the park [52:20]:
Suzi: So I didn’t, before when I’d ever had done pacing, it would very much be like a timed walk and all of the rigid control measurements and like, “Oh, I can’t, you know, I can only do this” and “I need to do this for three weeks before I then add it on another little increment.”
It was like once I had the strength to do it, I’d do it until I felt that the fear would get too much, and so it would be better for me to just like sit down and calm myself down again and, you know, bringing yourself back into that window of tolerance.
Liz: So you were listening to your nervous system, rather than the rigidity of like, “Oh, I lifted my finger too many times today.”
Suzi: Exactly. Like pacing for me in that sense, I stopped doing it.
And I don’t mean there that I just like did everything that I wanted to do and never needed to rest. Again. It wasn’t like that. I still rested, and I still rested in between activities, but I rested cuz it was like, “yeah, I’ve been out, and I’m a bit tired because I haven’t walked for three years and now I’ve walked.”
So yeah, I’m a bit tired and I remember the day when my rests stopped being in bed. They started being on the couch, and I would stop being so like,”I need my eye mask and everything with it.
It would be like a rest where I would meditate, but I would, I wouldn’t have headphones on, and I just took back all the kind of the control and the fear.
And I remember the day when I didn’t have a rest.
I may have rested by watching TV or like had done a meditation, but it wasn’t like, “I’m gonna rest now because I’ve done something.”
I flowed through the day.
And if I was doing activities like coloring or things that were mindful, and that I found were calming me down, that’s all I needed to do.
And it was just so weird cause I had never approached it like that before.
Liz: Flowing through the day.
Suzi: Yeah, exactly. And you know, I loved dancing, so I would get up and dance and that helped me out. And then I did a lot of Qigong as well. So I started with Qigong, sat down, just did YouTube videos. And then I kind of created a bit of a like exercise routine for myself outside, which was some sort of bigger stood up Qigong movements all off YouTube, and then just like leg stretches or you know, doing little calf raises.
I was just trying to strengthen my muscles, cuz they were so weak. And I did that every day. Every morning I went outside in my pajamas, and that was it. That was my routine, and getting fresh air and the light in my eyes.
And yeah, I really felt the gratitude and just complete heartfelt awe of being in the world again and not being in bed again.
You know, I did not think I was gonna get out of the four walls. And I was, and I was okay. And it was like, I’m so energized right now that it just, it just snowballed.
Liz: And that gratitude snowballs, too. Yeah. As you said, because you were writing down what you were grateful for and your worst moments and what you dreamed about is happening and it’s like magically snowballing and, and you’ve seen all this progress and you’re doing what you love and you’re able to really be really, really grateful.
It’s quite a powerful experience. Yeah. And so was this around 2019, I guess?
Suzi: Well, so, um, 2020, the very beginning. So like March, I went on a trip to the Lake District and it was the first time we’d gone away without the wheelchair, and we, I walked up a really small fell – like a hill – in the lake district and it was quite steep.
And it kinda was like, “No, I’m gonna do it.” And yeah, I had to kind of lean on Rob all the way down, be just purely because my muscles weren’t like really strong enough to do it.
And the whole time rewiring – rewiring all the thoughts, all the feelings, and that was it.
I was like, “If I can do this, I’m good.” Like, “I’m okay.”
Suzi: And then Covid, happened and I went from just getting out into the world again into lockdown.
So yeah, that was kind of difficult, but then in the same way, I was like, this is how I’ve been living my life for the last three years. So it’s kind of normal. But yeah, it is a bit of a shame that that happened because like I say, I was in such a snowballing, forward momentum.
Liz: Yeah. That literally happened for me, too. I would say. Like I kinda would say I was recovered by November 2019. We had a nice honeymoon. And then so during Covid, what then sustained you?
Suzi: So before Covid, I was ready to get back into some sort of work or something. So I was looking at doing volunteering, which then I obviously couldn’t do, but my brother owns a bar, which was obviously shut, and he started doing cocktail delivery.
He asked me to help with the marketing for it, which I had done in the past. And yeah, I kind of was like, right, perfect. You know, I needed something.
You know, I obviously had my fears about starting work and being responsible to someone and having an employer. So what’s better than your brother as an employer, you know, he was gonna understand if anything happened, but it didn’t.
And I just rolled with that, and yeah, just kind of went back into normal life and carried on the exploration of what it was I enjoyed.
And you know, I was really just so self-aware through all of that period of, well do I enjoy this? And, you know, I learned so much about myself.
I almost see it (the 2017 relapse) as a separate illness to all of the other years because it was so severe, but also because of just what happened. And you know, the self-compassion I learned, the self-forgiveness. I don’t know, I think the catalyst was three months into the (2017) relapse. It was my 30th birthday, and I was at my mum and dad’s and I was ill again.
I just had this moment of, “I cannot go into another decade into my 30’s hating myself, putting all this pressure on myself, being how I am.”
And I think part of me knew that that was adding to my health, my illness, and that’s where the gratitude was the very first thing that I did from the kind of starting to come back to myself and being more intentional, and just really connecting with with life as I wanted it to be.
Liz: So you said you had a relapse. Was this after lockdown?
Suzi: No, no, no. I just like went back to the beginning (2017).
Liz: I do that, too.
Liz note: I put dates in parenthesis in case it’s easier to follow. I think it’s cool that Suzi’s catalyst had been a seed that was planted long before things all came together and relate.
Suzi: So yeah, so that exploratory phase through Covid (2020) was really like, am I enjoying this? And the relationships in my life, are they really for me? Are they the ones that I want in my life?
You know, we built raised beds like everybody did in lockdown and started growing our own veg. And I loved that, and still do it. And yeah, it just kind of carried on.
And at that point, you know, I was like, “Well, this is kind of it then,” and you know, that was, I considered myself recovered at that point really.
Liz: Yeah. All right.
So I know you said you were helping your brother with marketing his bar, but what do you…what are you doing now? Have you found your passion?
Suzi: So kind of alongside that, I was also obviously thinking “What next? What am I gonna do?”
And I knew that I wanted to do something meaningful and the experience I had was so powerful that I wanted to help people with this illness, but also help people who are disconnected from themselves who don’t feel that connection to their true self, who do have a lot of self-criticism and low self-esteem.
And, you know, I’d come to find a loving relationship with myself that has continued to grow. I wanted to help people with that.
You know, I…it’s horrible putting all that pressure on yourself and not liking yourself.
You are the person that you’ve gotta spend your life with. You know, before anybody else, you have to spend your time with you.
And if you don’t like yourself, that’s not gonna be an enjoyable or healthy or happy experience. So, yeah, I was like, how can I do that? And thought about, you know, counseling and that.
And I just settled on coaching as something that I didn’t really know loads about, to be honest, but it just sounded… It was one of the first things that I did after my recovery that I really took a non perfectionist mindset over. So in the past it was always like, “I need to know the perfect final outcome of what’s gonna happen, and I need to know every single stage to get there.”
And this was like, I’m just going to take the next step of doing a course. And that’s it. And I’ll see where it goes.
And I might not become a coach at the end of it, but if I don’t, I’m pretty sure I’ll learn along the way and maybe something will happen from that.
So that was like a really different approach for me to take.
But yeah, so I did a diploma in wellbeing and resilience coaching with a view to be helping people with, you know, with everything that I’d learned. And I wasn’t sure whether I wanted to help people specifically with symptoms because I wasn’t sure, would it be a trigger for me? You know, how would I feel doing it?
Was it safe? Was it healthy? And that’s something that I learned through doing my case studies, and now I am in a place where I feel that I can do that.
Liz: And I just wanna acknowledge helping others after you go through a journey. Many of us are called to do that, but it’s not easy because I didn’t take any course and I’m not mentoring people one-on-one (anymore).
Now I kind of guide people to do what programs and coaches might help them, on a case by case basis. But when I was first taking those calls, it was a lot, and I wasn’t prepared for it because some people, maybe they haven’t seen someone who recovered before, or they’ve gone through the medical system and have been brushed off, and you’re taking on all their traumas and all the symptoms and they wanna compare symptoms with your symptoms.
So, it was a lot for me. So through this course, you’ve learned how to navigate that, and, yeah, I’d just like to hear a little bit more on that.
Suzi: Yeah. So, well, I was very much talking to my tutor about it and whether it was something that I was ready to do.
And I just felt very much with all this wisdom that I had from what I’d learned, I couldn’t not share it, but was I ready?
And I learned a lot through my case studies, and I did have a lot of case studies who had symptoms, and it wasn’t that I was necessarily coaching them with, “You need to do this, this, and this,” like a program would teach you. I wasn’t teaching them the tools specifically to get better. I wasn’t saying, “here’s the rewire process, do this.”
It was helping them with all of the other topics around it, all the limiting beliefs, all the self-compassion, connecting to true self, perfectionism, fear. And through doing that, like you say, it’s kind of you’re holding people’s traumas. You know, there’s a lot of similarity between the experiences that we go through.
And so it can be quite triggering. And you know, a lot of us have the helper personality, too. So there’s a lot in it that I think you have to be very mindful of. Very conscious of.
So I think I mentioned earlier from being 23 to [when I recovered in 2020], the longest period of time I had that I was well for was nearly 18 months. So I almost had to get past that point because I’d relapsed after that time.
So once that time had gone by, I then started to grieve a bit and grieve the illness and grieve what I went through.
And grieve how hard I worked to get better.
And I think acknowledging that and allowing myself to have that rather than just going through it with like, you know, this very resilient kind of positive mindset, where I knew it was painful, and I did grieve whilst I was ill…
But this period really allowed me to look at it for me and what I went through and my trauma with it.
Now that’s happened, that space is there to hold other people in it, rather than it being something that’s about me.
Liz: Ooh, that is so powerful. Allowing yourself to truly grieve.
Maybe that’s one of the reasons I initially found it so difficult to hear about cuz I was so focused on positivity and rewiring, but like allowing myself to truly be the one who can feel those feelings and hold space for myself.
Suzi: Mm-hmm. You know, if of everything that I learned about emotions, they don’t go anywhere, so that grief is gonna be triggered by somebody else, if it’s not been processed by you.
So, and you know, that’s kind of a recent thing that that’s happened really. And there’s still, you know, in the way that grief does, it’s not an end process.
Things come up and it pops up where it does and, you know, you deal with it when it comes.
Liz: Wow. This is such a powerful story, Suzi.
And you are such a shining light. You’ve been through the darkest depths, and I am just so inspired by your story and by you. And I’m so glad we could do this interview.
I do want to ask, do you have any final words of wisdom for people who are watching our interview?
Suzi: Ugh. Many (laughs).
I think a key thing is give yourself time.
Don’t put so much pressure on yourself to fix yourself, to get rid of symptoms. Give yourself time with these mind body approaches and things like that.
And even my own recovery, it can happen quickly, but I feel like in it not happening as quickly… for me, there is leftover fear. So to really make it a sustainable recovery, to really listen to yourself and what you need and your nervous system, give yourself time.
Don’t rush it. Healing, I think I watched your interview with Dr. Cat and she used the word transformation. And it really is.
When you go to this level of healing, it is a transformation of your life.
And that isn’t something that you want to rush.
…if you want it to be sustainable and you want it to be how you’re gonna live for the rest of your life, how you’re gonna relate to yourself for the rest of your life.
So yeah. And be honest with yourself.
Be honest with yourself about your beliefs, about yourself or about life.
Get really curious. Get, yeah, honest.
You know, if there’s a mindset of being a victim, don’t shame yourself for that. You didn’t choose that, you didn’t choose this illness, but you can choose your mindset.
You can choose to do a recovery program*, you can choose to watch a recovery interview like this. And if you are, then that belief is in you. You know, people, they find it hard to believe, or like that self-esteem isn’t there, or that self-belief isn’t there.
If you are doing something that’s good for you, if you are watching a recovery interview, if you are even thinking about trying something, then you believe somewhere in you, it might be small, and it might be buried, but you believe because otherwise you wouldn’t be doing it.
So yeah, just keep going. Keep believing and reach out for help if you need it. You shouldn’t be ashamed to ask for help.
We’re not meant to do this alone.
Liz: Oh my gosh, that’s so powerfully stated. Yeah. And we’re in no rush.
This is about how we’re gonna live the rest of our life in a sustainable and joyful way and showing up as our true selves.
*Liz note: Lindsay Vine (co-host of the Post-Viral Podcast) and I recently put together an independent recovery programs guide of lifestyle and nervous system regulation programs for ME/CFS recovery (and related chronic illnesses) in case it’s useful. ANS Rewire by Dan Neuffer and Dr. Cathleen King’s programs are among the 25 programs reviewed.
The pdf guide factors real participant feedback and detailed information on what these programs teach. We do not endorse one program over another, and we hope the information can help you chose what’s best for you.
If not interested or now isn’t the right time, that’s cool. See other recovery resources on my Resources page, many of which are free. Sending you support.
Liz: So how can people get in touch with you, Suzi?
Suzi: I’m on Instagram, as you mentioned. So, @trustandbloom_ and there’s a little underscore at the end. And my website as well, trustandbloom.co.uk. That’s where all my information about my coaching is. And there’s things like journaling guides on my website.
I’m a big, big believer in journaling. It was a big part of my recovery.
Liz: Oh, wonderful. Trust and bloom. Okay, I’ll include that link in the video description below. Suzi, this was so wonderful. I am so honored to share your story and what a powerful story. And thank you so much for sharing your wisdom.
Suzi: Thank you.
And thank you for doing this. Thank you for putting it out there because you know, it can be hard to find these things when you’re in the thick of it. And hearing these stories really, really help, and I think really inspire. So thank you for having me.
Liz: All right. This was so great. You’re the best. You really are.
Suzi: Oh my God, I’m so nervous about doing this. It’s the first one that I did.
Liz: Yeah. But this is great. This is going to inspire many people. I’m just so honored to edit to it. I’m like, oh my gosh, this was one of my best ones. Cause just your powerful story, insights, and you have a delightful presence.
Suzi: Thank you.
Liz: Have a good rest of your evening. Take care. Have a good night.
Suzi: Okay, you, too.