Riané’s heartfelt ME/CFS and Long Covid recovery story

Liz: Oh my gosh. I’m so grateful Riané that you are here today with me sharing your story. It’s so nice to meet you face to face.

Riané: Yeah. Thank you so much for having me. It’s such a big deal for me. Yeah, it feels a little bit unreal. To be honest.

Liz: Yeah, it’s a full circle moment. Yes, absolutely. All right, so I have the pleasure to be interviewing Riané Booyson from South Africa, who is currently living in the Netherlands.

And Riané healed from Long COVID, ME/CFS, POTS, fibromyalgia, and more after four years, and she’s gonna be sharing with us how is she fully recovered. So Riané, I typically ask people who come on my channel, what your purpose is for sharing your story.

Riané: Yeah. So, I think for me personally, of course, it’s a really full circle moment.

Cause I still remember when I was in the depth of the illness, and I was watching one of your videos. And I remember, I think it was one of your videos where you were sharing about rewiring beliefs. It was really inspirational for me, and also watching some of the recovery stories.

And I was like…I promised myself one day I will be one of those people and I will come on here and share my story.

So yeah, it’s quite surreal to be doing that now. But the main purpose is to give others hope. And assurance to know that recovery is possible. If it can just help one person, to not lose hope or yeah, to not feel like they are alone in this and like it will never happen for them, then I think, yeah, that’s the purpose.

I want people to know, even if recovery is imperfect, it’s still possible. 

Yeah.

Liz: Thank you so much for sharing that powerful message, and it’s so inspiring to hear because you’ve were in the thick of things for four years, and you made it out. So let’s go back to the beginning.

Can you describe your life before you became chronically ill?

Riané: Yeah. So before I became ill, I had a beautiful life, almost like a perfect life, you know, if I can say it like that, especially on the surface. Everything was the way I wanted it. I was happily married.

I had a really great job, which I loved to do. I was social. It feels like I was the most healthy I’ve ever been actually. So it was quite a shock as well because of that. But all that being said, I think, yeah, I had a beautiful life, but also part of that life was a lot of stress. And I think, at the time, I didn’t realize the cost of living that life on my body.

So, I mean, I was always on. I was quite restless. Always something to do, Always, yeah, from the one to the next thing, and I was quite a high achiever type-A person.

I think even though I was really happy with my life, and I’ve really missed that life, I also, in hindsight, can see that it wasn’t a very sustainable way of living.

Liz: It wasn’t sustainable.

Yes. So many of us can share a similar experience of not living sustainably burning the candle on both ends, trying to achieve and more.

So can you describe the onset of when things started to unravel? Was it sudden or was it gradual?

Riané: Yeah.

Before I answer that, I just wanna mention something else about recovery stories that I forgot to mention in the purpose question.

I think sometimes recovery stories can be so inspiring and so hopeful, but I think it can also be very hard to listen to and really even triggering sometimes, and I want to acknowledge that. 

And I was there myself. I had those thoughts of like, “Maybe she wasn’t as ill as I was?”

Or maybe it wasn’t even real? Or maybe it’s different for me. Or maybe my body is different or broken. And I’ve been there. I know those thoughts and those feelings. 

I know how hard it can be to hear someone else has recovered, while you are still in it, and you are doing all the things that they’re saying, and it’s not working for you.

And I really want people to know that I’ve been there as well. You know, I’ve had those same thoughts. I had that same feeling. And even though my recovery story, cause it feels like my recovery story is not perfect.

There were lots of imperfect things and wobbly messiness in it. And it still happened for me. 

And that’s really important for me to mention, and I want people to know that.

Riané: And then to answer your question about how it started.

Yes, it was both sudden and gradual. So I’ll explain a bit. So I got right at the beginning of the pandemic, I got a COVID infection. Like even before they knew anything about long COVID.

I don’t think it was really known that COVID was already in The Netherlands at that time. So it was still, you know, a very far off thing. So at first it felt like just the flu. A heavy flu, like quite heavy. But then I felt a little bit better, and I even joined my company, on a ski weekend, that weekend after I got the flu – which was COVID.

But then I…I didn’t feel okay.

The whole weekend I was feeling off. My muscles felt a bit weak. I felt really strange, and I had difficulty breathing as well.

So it was a strange experience, but I thought maybe it has to do with the altitude or with the skiing or yeah, I wasn’t sure. But then when we came back, basically our whole company was, or a lot of people were ill, my husband was also ill.

We then had to quarantine because then it was full lockdown as well in the Netherlands.

And I think basically when we started just living our life again, I just didn’t get better. 

And also when we started going out of the house, I couldn’t walk for like a hundred meters, and I would be completely out of breath.

My muscles were super, super weak, like complete, complete weakness. I mean, we used to cycle a lot, and I couldn’t even cycle. It was quite bizarre. And then I still in the beginning, tried to work. I tried to go back to work.

I managed like two or three hours a day, but it was really, really a struggle. And the doctors just told me to walk, to do physiotherapy… and yeah, we all know how that ends, like it made me worse.

I continued to get worse and worse in the first six months until a point where I couldn’t function at all.

So I had to stop working completely. At that point it was really severe and I couldn’t do a thing.

Liz: Thank you for sharing that. I think it’s so important for people listening to know that you’re not alone if you were told to push through when you were already pushing through beyond your limits.

And I think the importance of resting early on when we get a flu, when we get COVID, and tending to our bodies is so important. But that’s not how society was. Society’s starting to wake up now that we can’t just go pedal to the metal and we need to rest sometimes. But in the early days, yeah, if we’re pushing through, trying to keep up at work, trying to hold on, the more we hold on.

The more we start to lose everything it seems.

Riané: Exactly.

Yeah. And yeah, of course, I wish I knew then what I know now, but I think that’s also so important what you’re saying, and to normalize that. 

When our bodies are fighting an illness, it’s okay and good to rest. It’s necessary.

It’s for our own wellbeing that we need to do that, yeah.

Liz: What was your experience with the traditional medical system?

Riané: I think it was so hard in the beginning when they didn’t know what was going on, and you know that dreadful feeling when you’re getting test results back from the standard test, and there’s nothing wrong.

I was literally told to just relax and let go and to go for longer walks.

Liz: Relax!

Riané: Yeah. And of course that’s what I tried to do.

It was so hard. I think it was one of the hardest parts, of having this illness is being so… feeling so misunderstood. It really made me feel like, how do I say it?

I felt like a crazy person. The more I tried to explain how I was feeling and the symptoms I was having, and the more the doctor was not really knowing what to do with me. The more I felt like something is wrong with me. That it’s also something mental…

Liz: But then you also wonder if it’s some deadly thing or some really scary thing cause you feel absolutely terrible, and you barely can move and your life is 1% of what it used to be.

Riané: Exactly, exactly that.

Liz: So you said you started off struggling to walk a hundred meters and then over the course of six months things became more severe, so, uh. Around, let’s say six months into it, can you paint a picture for the audience of where you were at, a typical day?

Riané: So I think in terms of functionality, I really couldn’t do, much I was. I like to say I lived a horizontal life. 95% of the time I had to lie down. 

Otherwise the symptoms would get so severe, I just couldn’t stand it. So it was also not like a choice. It was my body sort of forcing me.

I think practically [00:10:40], I spent a lot of time lying down. I couldn’t really look a lot at screens… I think basically one hour a day.

I couldn’t cook my own meals.

I could only be upright for 2 to 3 minutes. Then the symptoms would get so severe that I had to lie down again.

I showered once a week. Terrible to say that, but it’s just, yeah, that was the only thing I could manage. And I had to sit down in the shower as well with a shower chair. At that point I didn’t really go out the house much, except for if it was like a doctor’s appointment or for treatments.

But I had to use a wheelchair. I couldn’t walk like really a couple of meters. My body was not functioning. I could still move around in the house.

I could still go to the toilet, but it was a challenge. Everything was a challenge.

Liz: Yeah.

Liz note: We included this written summary of Riané’s functionality in her own words, so people can relate, and for those who just prefer a clear written recap. At her worst, she was largely bedbound showing just how severe her baseline was before recovery. 

Liz: You were mostly horizontal. You had told me that you had POTS. I’m sure you didn’t get that diagnosis immediately, postural orthostatic tachycardia syndrome. But it sounds like from what you’re describing, it was hard for you to stand up without getting symptoms.

So I assume that was the POTS?

Riané: Exactly, yes. And I really had that quite severe. Eventually I had that diagnosed when I got to a doctor who specialized in ME/CFS and POTS. But yeah, I didn’t have that diagnosed in the beginning. So of course I didn’t know what was going on, but I just, yeah, didn’t have a choice but to, to slow down and reduce all stimulation.

Liz note: Here is a written summary of Riané’s former symptoms and diagnosis in case it’s helpful for you.

Liz: How was that with your husband? I guess he had to do all the cooking and cleaning?

Riané: Mm-hmm.

Liz: And, you know, you once went cycling, had the job, had this social life, and then now you are only able to like go to the bathroom.

Riané: Yeah. So I think it’s, of course it’s really hard for us who get ill, but I think for our partners as well, seeing that happen. And also all the load and responsibility that gets piled up on them. So yeah, I am forever grateful for my husband. I don’t know how I would’ve done it without his support and care. And I also feel really lucky to have had that. He had to take care of so many things.

Liz: Thank you for acknowledging that. And I was in a fortunate situation. He was my boyfriend at the time. Now we’re married and have three kids.

And to those who lack support, my heart goes out to you. It’s gotta be really difficult if you don’t have people who are supporting you with love and you know, just the physical labor. So just wanna extend our support if you’re dealing with this alone right now.

Riané: I’m really feeling that with you, and I think that just piles another layer of toughness on top of it that must be really hard.

Liz: Yeah, But I was telling someone yesterday, I was like, to not be afraid to ask your community for help, there are people out there who might be willing to help, and to not be afraid to ask. You’re not being selfish.

Riané: Yeah. And I sometimes think like if I could go back, there’s one thing I would change, and that’s to ask my friends more for help. Specific things like, “Could you maybe cook one meal once a week?”

You know, and I never asked this specifically. But that is something like I would really encourage people to do, especially if you’re alone, or have to live by yourself. It’s hard for for us, many of us to ask for help, but try it. You deserve it.

Liz: Yeah, you do deserve that. And you could always somehow write a thank you letter or do something that’s in your zone and without you feeling like you have to make up for it or that you’re a burden.

So sometimes gratitude is enough in a friendship and much appreciated, too, without you having to give something if you’re not able to physically do anything for that friend, you know.

Riané: I love that.

Yeah. That’s so beautiful.

Liz: Okay, so you eventually find an ME/CFS specialist who diagnoses you with long COVID ME/CFS pots and fibromyalgia?

Riané: Mm-hmm.

Liz: How long did it take you to find that specialist,

Riané: I think it took me one year to find that specialist, almost a year.

And I’m super grateful, because actually my neighbor knew someone who had ME/CFS, and she [my neighbor] put me in contact with her [neighbor’s friend who had ME/CFS] quite early on. So [neighbor’s friend] she gave me a lot of advice from her experience, but she also then told me about this doctor.

It took quite a long time to get an appointment, but then, one year in, I had the diagnosis.

That for me was a big shift because it was like a milestone, which shifted my focus from trying to figure out what was wrong and trying to get the answers to actually focusing on, “Okay, how can I get better from this?”

Like, what do I do now?

Of course, it can be a big label. And it can be quite overwhelming when you first get diagnosed with these kind of conditions cause of the stigma around it sometimes.

Or the outlook from the doctors that will tell you that there’s not a cure or there’s no treatment or the prognosis doesn’t look good, which I was told as well.

He [the ME/CFS specialist] also recommended full bed rest and only to do things for the amount of time that my symptoms didn’t increase.

Liz: So it was validating to hear.

It helped you focus on healing. But this specialist doctor also had limiting prospects for your recovery, which wasn’t great.

Riané: No, and I think I did learn at that point to really fully rest because I believed that that was what was needed to not get worse.

I did that for a while. I used the rest and pacing as an approach to manage my symptoms. But then of course, you get to a point where you keep searching for answers. Like how did other people get well? What do people do?

For a while I did the rest and pacing approach, which helped me manage my symptoms, but it didn’t make any difference in terms of progress or help me get better. 

Yeah, and I also of course ended up in many rabbit holes of going down, trying to figure out, you know, like trying to turn into a medical scientist.

Liz: Okay, Riané, so I would love you just to quickly list a couple rabbit holes. We don’t have all the time in the world. People wanna hear how you recovered, but can you just list a couple that you went down?

Riané: Yeah. I think it was just like reading medical journals or just trying to understand like, oh, the blood clots.

Blood clotting or mitochondrial dysfunction. Yeah, just all the mechanisms, all the different aspects.

Liz: Oh yes. Those microclots and the mitochondria. Microclots is more the Long COVID rabbit hole and then the mitochondria is with ME/CFS and Long COVID.

Note: Nothing is medical advice. You should explore with your own trusted doctors, and do what is right for you.

And then I’m sure you bought supplements or stuff for them?

Riané: Yeah. Okay. Yeah, I tried the supplement root as well.

Liz: Okay. Alright. So. Now I wanna get to what things started to move the needle for you. You said you tried supplements. Did that move the needle any?

Riané: No, no. It didn’t move the needle.

But I think like before I found the things that really helped me, there were some things that helped me manage my symptoms, but it didn’t really make me feel better.

Well, [that] made me feel a little bit better, but didn’t result in lasting improvement. And that was like pacing, resting. I changed my diet for a while to the AIP diet autoimmune protocol.

And I think that helped, as a sort of basis, as a foundation. I stopped losing weight at that point. I lost I think 11 kilograms at that point. So I had yeah, quite a lot of diarrhea. So I lost a lot of weight, and then, since I did that, that stabilized a little bit. So it was one of the puzzle pieces.

I also tried LDN, for a while. And I have to say it did help with my pain. So, it did reduce the amount of pain I had because I had quite severe pain. And I think the only thing with it was like, the moment I stopped using it, it came back.

So it was a symptom management tool, but it didn’t help to resolve what was going on.

Liz: The root.

Riané: Yes, exactly. 

And then, I think it was probably six months after I got the diagnosis, I came across brain retraining and I started the Gupta program. I really gave it a good go for one year.

I was really committed, and it didn’t move the needle for me, so that was really hard. And it’s not the program, I want to make that clear, I still had missing puzzle pieces.

I really believed in the approach. I really believed that brain re-training is one of the puzzle pieces, but I have to say after a year of trying it, I was quite starting to feel dismayed and really hopeless. Like,

Why is it not working for me? What am I doing wrong? And why is it working for other people but not for me?

So that was quite hard. And then after a year, I let go of that a bit. So yeah, those were things that helped me manage my symptoms. It did.

Liz note: Riané compiled a written overview of the things that helped her manage symptoms, but didn’t necessarily result in lasting progress. Here she also shares more specifics on the diet changes that helped her manage.. 

Riané: The Gupta program as well, I think helped me a little bit in the approach and to deal with it a little bit better. And also feeling like I was doing something, But unfortunately at that point it didn’t, yeah, change much. And then I actually had my worst crash about two years in.

Liz: What triggered your worst crash?

Riané: I wish I knew. I started feeling a little bit better for two weeks. And then I just had a major, major crash like where I was.

Almost a hundred percent bed bound for six weeks. And it was really, really tough. My symptoms got the most intense and severe that they’ve ever been.

And it was crazy because that was after doing like all these things, you know, trying so many things I’ve done. Also before that I did a lot of physiotherapy, and , that just made me worse.

So many things I tried just didn’t move the needle. And for example, I tried anxiety medication. I tried antidepressants.

The anxiety me made me worse, as well. And the antidepressants. I think at the time it was like a mental, something to lean on, to think like, “Okay, maybe this will help.”

But in the end, I feel it more numbed me down and, didn’t really make a difference. 

Liz note: To be helpful Riané shared a written list of the things that did not help her. She had a mixed experience with the antidepressants as she described, and I just want to add that nothing is medical advice. 

Riané: But at the time it [the antidepressants] was something I felt I needed because I was quite devastated. Yeah.

Liz: Ooh. So you’re dealing with this devastation, this grief of the life you once had, and you take this pill and it gives you a feeling you’re doing something.

But what it really does is just numb those feelings.

Riané: Yeah. And I think for me it felt like it numbed things, and maybe that was what I needed for a bit, you know? And I also want to acknowledge that I think sometimes, medication has a place, you know, and medication like LDN or anxiety meds or antidepressants.

I think for some people it can be really helpful. So it depends on your situation.

Liz: Exactly, and LDN is low dose naltrexone. It’s off-label used for CFS and fibromyalgia. If it does help you, that’s wonderful. It’s all about listening to your own body and intuition, and I hope our stories also encourage you to if something doesn’t work for you, if something does, to really own that.

And know that all our stories are unique, and what works for us.

But just because they’re unique, it doesn’t mean that you’re so unique that nothing’s going to work for you. That we’re similar in [none of us being too unique], ultimately your puzzle pieces will fall into place, too.

Riané: Absolutely. And I, I so love that you say that because that’s exactly my philosophy, but I think there’s these universal golden threads or universal principles that are similar for everyone.

So I love that you’re also saying like, “You’re not that unique, that it won’t work for you.”

You know, there are these universal principles.

And then there’s the unique piece, the tailored sort of approach, the puzzle pieces that are unique to your story, to your journey. 

And it’s not easy always to know how to find them and what they are. And even that in itself can feel overwhelming. But I like to say like, if you follow what you’re interested in.

Oftentimes it worked like that for me. If it was something I was really curious about or interested in, or felt drawn to, that usually was a stepping stone or something that led to the next thing, which actually helped me.

So yeah, follow what you feel drawn to or what resonates for you.

Liz: Yes, and it could always be a stepping stone as well. So you have your worst crash. You’ve tried the physiotherapy, some medication, pacing and resting, the autoimmune protocol diet, which is mostly meat and certain vegetables. You try Gupta. But now you’re at your lowest point and you’re like, “oh no.” Did you have an epiphany at this moment?

Riané: So, oh, I remember two really low moments. Like there was one when I was literally on the floor and I was just crying. I was literally throwing an adult tantrum, but I was like on the floor crying, breaking down. And I remember my husband, sorry, I’m a little bit emotional if I think back to it, but he had to literally pick me up from the floor, you know, and it was in this time.

When I [had one evening and I was just like, this is no way to live. Like I don’t wanna live if this is the way that it’s going to be. There must be a way, like surely something should work. 

And I was kind of at that point where I was prepared to do anything.

It didn’t matter how far out of my comfort zone it was, or that, I was just determined to find something that could support me.

And I remember it was one evening, one of those sleepless nights when you’re super, super tired, but you can’t sleep. I was just searching things and looking for things and I don’t know, it was sort of coming together of a combination of things.

And after that moment, I started trying a few different things together and that was also the moment that I discovered nervous system practices.

I started doing that. I also decided to try trauma healing. Because at that point I’ve already heard a lot. And also in the Gupta program, it was referred to that there might be trauma. And I was quite curious about that and I thought like, “This is something that’s worth looking into. I was like, okay, let’s look at that.”

Liz: So you’re on your phone sleepless at night and you come across, “Okay, maybe I need to heal my trauma?” That’s how it was? And you see something?

Riané: I think it probably came [from] a while of different things I was looking at, but I think some of the people that I was following on Instagram were talking about things that were helping them.

And I also watched a few recovery stories that this came up. 

Like, you know how it works, it’s just like these things that just pop out you and you’re like, “oh, this, maybe this.”

Liz note: I definitely relate to the synchronicity of how things can just pop up when we’re ready for it; and then we see or hear about them more and more.

Riané: And then my mom was telling me about this one treatment – body stress release, which is a really, a physical treatment. Similar to craniosacral therapy, I think it’s called, where that helps the body to release some of the stored trauma. So then I started looking at that again because I just ignored that for a long time.

But then I was like, “Okay, maybe I just need to look at all these things that people recommended me.” And I decided to make an appointment the next day.

Also a friend of mine recommended TRE (tension & trauma release exercises) exercises, and that’s actually how I came across my trauma therapist because she offered TRE.

But she was like, “There’s no way we’re gonna do that. ’cause in your state, your way to, yeah, dysregulated to do that, we’re not gonna go that approach [in the beginning].” But what was beautiful was she was also trained in nervous system work. 

So it was like just this coming together of things that really helped me.

And then on Instagram, I found a lot of videos suddenly about nervous system regulation or somatic practices. And I was trying them out, like out of curiosity in the next couple of days and weeks. And I was like, “Wow, this actually feels like it’s doing something.” Like I feel a tiny shift. And I was really curious about that.

I mean, it didn’t take my symptoms away just immediately, but I could feel something shift. 

And I was like. “Wow, I can actually do something, and then something happens, and I was really curious about it.”

Liz: I have a question.

Riané: Yes. So the Gupta program is more of a brain retraining program that includes a relaxation components and you’re reframing things.

It’s about the amygdala and turning down the fear response. How did these new practices differ? Can you explain the slight difference there for what helped you?

Riané: I will try. So I think at this point [the new methods she was trying], it was much more a body centered approach.

So [previously] I tried a lot of things with the mind and working with the brain like you just explained.

But then these [somatic] practices, I will give a simple example.

If you just massage your ear, for example, [demonstrates] this stimulates the Vagus nerve because there is nerve endings in your ear and the Vagus nerve then helps.

To switch your nervous system to the more parasympathetic state, which is the more rest and digest state. So, these like very seemingly simple practices made me feel a little bit different. So I felt like a little shift. Or a little of like, “Oh, something [for if ] my symptoms feel a little bit less intense, if I place my hands over my eyes, for example, after like 10 or 15 seconds I feel something shift.”

So that was the nervous system and practices.

And it’s very different in the sense that, it’s something you physically do with your body, not something you do with your mind or mindset or with visualization, but it still has the same effect, right?

It still works on switching down that fear response.

So it’s actually, I think very complimentary to the brain retraining work because it has the same goal but from a different angle. So I think probably people might have heard of like top down or bottom up, and I think that’s it, right?

Liz: Right.

Riané: The brain retraining might be a little bit more the top down.

And then the nervous system or somatic works which really involves the body sends safety signals from the body to the brain. So then it’s that bottom up again. And the two together for me at least, was a really good combination.

Liz: Okay. So you’re starting to do some of these more gentle somatic practices at one point, do you then dive into more deeper work?

Riané: Mm-hmm.

Liz: Can you share that journey and any epiphanies you had?

Riané: Yes. So I think I did it a little bit together. So I started doing these practices, and then I also started working with a trauma therapist at the same time.

To give a picture, the first session I went there, I lay flat on the ground because I couldn’t set up right.

So I took a taxi to get there, and then I just lay there and she was like, “Okay, we’re gonna do this thing.” And she was so skillful and helped me.

And I think what’s important to mention about the trauma therapy. It can sound really scary, I think, for a lot of people. I so understand that. But it can also be like a very gentle process.

I mean, in the beginning we did a lot of safety and resourcing work. And not really going to traumatic memories or things. And I think people might have sometimes a perception that it’s really something scary. I had that, too.

But it’s actually quite a gentle and natural process if you work with a skillful therapist. I also then looked into emotional processing, and I think actually one of the videos of your, on your channel, I think it was with Vera if I remember correctly, but she was speaking about emotional processing and how you can go through the emotion, and when you come out on the other side, it feels so much better.

And I was very fascinated about that or by that. And I really had to learn how to feel my emotions and how to process that.

Also the Journal Speak method. And then I think like the moment I started learning more about these things, I just continued to learn more. And so did the more internal work together with the more body-based approach.

So I think about probably six months of just doing this. and then I added brain retraining back again. And I think that was then sort of, yeah, a final puzzle piece.

But before I talk about that, you asked me if I had any epiphanies. I think there was one moment in that really dark period when I came across a book and podcast by Eckhardt Tolle about A New Earth.

And in that podcast and book, they speak about how each of us have a part of us that can never be damaged. That really opened something in me and it’s like, yeah, that sort of inner wholeness that we have.

So despite everything that happened in your past, your story, what was happening with the illness, there’s still a part of you that cannot be diminished, that eternal part of you that is whole, irrespective of what is happening. 

And I think that gave me a lot of hope. And I wanted to, yeah, really connect to that more. So that also led me onto the more internal exploration.

Liz: Oh wow. That’s so beautiful. Thank you for sharing that. And I will link that book, too, in the video.

Yeah. That’s so beautiful. Just that whole part of us that nothing can break because it truly feels like we’re broken, but connecting with that our inner wholeness, our true selves. That’s so beautiful. So thank you for sharing that.

Yeah. All right. Okay, so it sounds like you found your recipe, there were layers and there was an order of things, and you know.

Like you told us in the beginning, it wasn’t a perfect straight line. It was a little bit messy, and it felt like you had wasted a couple years, but then you know, that was a stepping stone to ultimately find your layers for healing.

You did mention something called BSR. At what point did you do some of those Body Stress Release [practices]?

Was that with a trauma therapist?

Riané: So that was with another practitioner, but it was in the same time.

So I started these things together. So I would do one, one week and one the other week, like it was.

Liz: Mm-hmm.

Riané: So that was, yeah, in the similar time. So I think these different things together for me, like you say, was the recipe that came together.

And it’s like, it’s also not instant, you know.

There were moments when I was like, “I think it’s happening.”

But often I think it doesn’t really feel like you’re healing while you’re healing. It’s only in hindsight that you can see, “oh, I actually did make progress.” Or things are starting to shift and come together.

But I could feel changes. And I think the body stress release helped me in the way to uncouple a bit of the fear from the symptoms because I did get a bit of symptoms after treatments.

The way she explained it to me is like, that is the way the body then lets go of things or heals things.

And that was a big shift for me. Because then it was like, “Okay, if I’m feeling this, like maybe this is just the way my body is sorting it.” Sorting out what is happening or what it needs to sort out, maybe this is the way my body is healing. So that helped me a little bit to bring in a reframe around symptoms.

Of course, I still had lots of fear around symptoms when they came up, and when I had setbacks, and I had many setbacks.

I never crashed like that major crash again. But I had many moments of feeling worse again or the symptoms getting more intense again.

Liz: Yeah. And, so I like that you shared that with us [that]. Starting to not fear the symptoms as much, but also acknowledging, yeah, we are a human, we’re going to fear it [symptoms].

But then you had a way to frame it that this is my body doing its thing, part of the healing process.

So you’re not adding that layer of fight or flight, and it’s helping your body go through that process.

Riané: Exactly.

Liz: And return to homeostasis. All right.

So can you describe a little bit what your upward trajectory looked like and how you dealt with those setbacks?

Riané: Yeah, so, that’s a good question because my upward trajectory didn’t always feel like an upward trajectory.

And I think it was not a straight line. And we hear this often right in recovery stories, but it really wasn’t a straight line. Sometimes it just felt like I was back at square one, starting from scratch again.

I think a big shift for me was. When I, and my trauma therapist, helped me a lot with this as well, [with] this all or nothing approach.

Like for me, for a long time, it was all or nothing. If I’m not a hundred percent recovered, then nothing is okay. You know?

And a big shift for me came when it was like, “Okay. can I shift that, that focus on recovery and wanting to be recovered to also just creating a sense of wellbeing while I’m recovering?”

Can I experience a bit of joy while I’m recovering? Can I live my life a little bit as I’m in this process instead of just wanting to be at that end goal?

And that is hard to do, but it really makes a big difference. And I think it was hard for me. Because I felt like, but if I allow myself to have joy or experience nice things or, be social with my friends, they will not know how hard it is for me.

They don’t see the price I pay for it or the cost it has, you know, or it diminishes my suffering. Like it takes away how bad it is on the other end.

But I think it can be both. You can make space for the difficult part, and still have good moments in between and still create a sense of wellbeing while you’re in that process.

Because then it sort of starts to snowball. And I think it creates then a sort of wellbeing loop. I really feel that was a big shift, for me, but also my upward trajectory, even after I started thinking of myself as recovered, even after I didn’t have constant symptoms anymore, I find it important to mention that even after that…I had setbacks.

Even after that, I had periods where I was not feeling that great, and where symptoms came back a little bit. And I find it important to mention this because I think sometimes the picture is that it’s a very clear cut thing.

And I think you’re on the mountain, it’s great now.

And I think for some people it is, and it’s beautiful, but for many it isn’t.

And I, yeah, I find that sometimes creates a lot of suffering. And for me as well, it was really like, “Oh, but am I recovered if this happens?”

I think it’s part of the expansion process after recovery.

Like there’s another part to reintegrate back into society.

Liz: Mm.

Riané: Like that’s a big thing. You’ve been out for years, so isolated, so lonely. And then I think it’s a process of expansion, after that as well, after the symptoms heal. There’s also the expansion back into life.

And that is a process in itself.

Liz: Yes. Expansion and reintegration, and there can be some bumps along the way, but ultimately it’s about how you bounce back from them and growing your resilience.

Riané: Yeah, and you asked me like how I dealt with the, it’s a good question. I think sometimes I cracked open a little bit.

Like I just, you know, like in the be beginning I would always be so disappointed and just cry. And I think that’s important to allow yourself to feel exactly how you feel when they happen. But then also I found it helpful to have like, go-to things that I knew. These were the things that support me and then really go back to the basics and just slow things down.

I think that really helped, and something that also helped me was to build a bit of a proof library of when things did go well or all the things that I could do, or the wins I had to look back at them in those difficult moments to go like, yeah, I know it’s hard now, but if this was possible, it will be possible again. And this is just temporary.

Liz: Ooh, yes, because sometimes the fear is, “Oh my gosh, I’m back to where I was.” But you’re focusing on like, “I got back and did these things and that.” The focus is on the bounce back.

Riané: Yes.

Liz: That’s so inspiring. Yeah, and sometimes when I just look at my old journals and stuff, it’s very inspiring just for me in everyday life.

So save those journals and yeah, thank you for sharing that, very inspiring, and real and authentic.

And I’m glad; I love the nuance of your story because you’re not saying “Oh, I just went to my tools.” You feel the feelings, you acknowledge it, and then you, you, yeah. There’s a space for both.

Riané: There’s a space for both. And it is an art. It’s not a science. You have to find your way with it. And I think, like a question I get a lot about expanding your capacity is “How did you do it? How did you start walking?” Or “Did you wait for the symptoms to go away before you expanded your capacity?”

Or “did you do it while you had symptoms?” And it’s a good question. It’s a tricky one as well, I think. But, for me, my capacity started expanding naturally as well. So I want to say that as I felt better, I could do more naturally. So it wasn’t a forcing or a pushing thing. But of course, at some point, I had to go from not walking to starting to walk.

And by that time, I really used the nervous system tools and the CFS school brain retraining method, which I didn’t mention that I think before.

But eventually I added that back in. So I was like, okay, this nervous system thing is working for me. I want to try brain retraining again. So I think with those tools, I was feeling really confident that I could do something before, during, and after activity expansion.

So that’s how I approached it. I didn’t wait for my symptoms to be completely gone before I tried anything.

But I always tried to listen to my body and some days, you know, the tools worked, and it helped me and I could do a little bit more or expand.

And other days like. A week later, I was able to do a bit less than the week before, and that was really hard mentally. But I was then, I kind of made a deal with myself that I will do this thing as a mind body partnership.

So I was like, not mind over matter, but mind and body together. And if the body says on that day, this is not it, it’s not happening, then I would be like [no].

It was really hard, of course, but then I would be like, “Okay, then we try again another day.” And sometimes I ended up in tears on those days ’cause it didn’t make sense, but then I would try again another day, you know?

So it wasn’t like a straight line of expanding my capacity, but I feel like I had tools to help me to, help myself feel safe enough to try it.

Liz: Ooh, I love what you said. Mind and body together. That’s beautiful. And thanks for, mentioning that CFS School. That was Jen and Karden’s initial program. Now it’s called Heal by Sonia International. I’ll put a link to that so people can find that, but .

Okay. Thank you for sharing how you expanded your capacity. It’s so helpful for painting that picture.

Here are some of the main puzzle pieces that help Riané get well and recover in the end. And again, it was a combination of these things and not a straight line out. (This slide was included in the video.)

Liz: Can you now talk about your life now and how the shifts from where you were before this all started?

Riané: Yeah, I think, so now I feel like I’m living life again. There’s so much wellbeing, and sometimes, you know, when I think back to my old life like there’s a part of me that still sometimes missed that, you know, like it was beautiful.

But now my life is very different, but it’s also very beautiful. You know, there’s so much  ew things like a change completely from the work I did then to what I do now. And yeah. And it just keeps expanding.

There’s some areas where I feel really a sense of freedom, and then there’s other areas where I’m thinking like, yeah, there’s still capacity for growth and expansion in that.

And I’m okay with that. It’s still part of my journey. But yeah, I’m extremely grateful that I get to love my life again. Yeah.

I’m also very grateful to God, and I want to mention that, that I feel, I’ve always been guided and held by Him. And also the little nuggets that took me from the one thing to the next, or those moments when something really, yeah, made sense or hit home.

It always felt that there was some divine timing in it. And also a higher power, really His presence through that.

Liz: That gave me the tingles.

Thank you for sharing that. I know some people are very, can be shy about sharing that part, but thank you for opening your heart and talking about that.

I think it will really resonate with people whether they’re religious, whether they’re more spiritual, but connecting to that, to God, to a Divine power.

Riané: Just something maybe bigger than us, whether it is hard to put that in words, isn’t it? But it’s irrespective of your religious or spiritual beliefs.

I think it doesn’t really matter. Whatever feels supportive for you, but if I look back on my journey, I can clearly see I wasn’t alone, even though it felt like that many times. But, you know, looking back, I know that I was held and carried and guided.

Liz: Mm-hmm. Thank you so much for sharing that.

Okay. So how are you now, giving back and helping people today?

Riané: I think already just when I started feeling better, and I was like experiencing the effect that some of these tools and techniques had on me and also some of the things I just learned through the different programs I did.

Gupta [program], CFS School [now called Heal by Somia International], working with the trauma therapist, all the research I did myself, I was really fascinated reading a lot about it. And I think when I felt those first few moments when I felt shifts in my body, with doing these simple practices, I was like, “Whoa, this is interesting.”

I want to know more about this. But also, very early on, while I was still recovering, had this burning feeling inside that this is what I wanted to do. Like this is really something I wanted to learn more about, and also help others with and share what I’ve learned. I think that was, for me, the biggest thing.

I wanted to share what I’ve learned. Because I was like, if I knew this before I got ill, I think it would’ve changed my life. So it was really for me, something really passionate. Like I just had to, it wasn’t even a question.

As soon as I had enough capacity, I started studying the different courses on trauma healing, nervous system work, and then also got qualified as a somatic practitioner, with the Embody Lab. And for the past two years I’ve been helping clients to, to find their way.

To see what works for them and to put their puzzle pieces together, and yeah, it’s an absolute privilege. I just love it.

Liz: Oh, that’s so wonderful. Oh my gosh. I’m so glad that you came onto my channel and are just such a source of wisdom and nuance and love and inspiration. Thank you so much, Riané. Oh my gosh, this was so inspiring.

Liz: And I always ask my guests, as you may know, what is your final message for people listening today?

Riané: I think one of the things is, if something that worked for someone else is not working for you, it doesn’t mean that you can’t recover, it just means that that maybe is not the right fit for you yet.

Or maybe there’s still some missing pieces.

But don’t give up hope. You are not broken, and you’re not flawed. There’s nothing wrong with you, and you’re not doing it wrong. It is a puzzle piece. 

And it is like a bit of a struggle to find your way with this, but don’t do it alone. There are so many people out there that can support you.

Yeah, that’s I think important. 

And then, my final, final message is that it always seems impossible until it’s done.

So that’s what I would like to leave people with.

Liz: Oh my gosh. Thank you so much. I love that message. And thank you again for being here. I’m so grateful.

Riané: I’m super grateful for you as well.

Thanks for the time, and it was really a full circle moment for me to be able to do this with you. Thank you for all the beautiful inspirational stories you put out there. It really kept me going and I know it’s a big help to so many.

Liz: And it’s my honor to have shared your story and to continue the full circle here.

So take care and have a wonderful evening. Bye.

Riané: You too. Thanks Liz.

Liz: Bye.

You can find Riané here on Instagram.