EP 9 | Pain, Perseverance & The Power of Community with Eline Duk

In this episode, we are joined by Eline Duk, the founder of the Spoonies Community, a movement dedicated to raising awareness and offering support for those with chronic illnesses. Eline shares her personal story of navigating multiple chronic conditions, including her journey through a severe ankle injury, PTSD, and her shift to alternative therapies. The discussion touches on the psychology of pain, the importance of holistic healing, and the creation of a supportive, inclusive community. For anyone dealing with chronic health issues or interested in holistic healing, this conversation offers valuable insights and inspiration.

If you'd like the connect with Eline, you can find her on Instagram, Threads and Facebook @thespooniescommunity 

or by visiting her website: https://thespooniescommunity.com

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You are stronger than you think, healing is possible, and we'll be here every step of the way. Until next time—take care and keep going.

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Transcript

[00:00:00] Katie: Today we are joined by Eline, the heart and visionary behind the Spoonie community. A movement dedicated to making chronic illness visible human, and deeply supported.

[00:00:12] Amanda: Diagnosed with multiple chronic conditions herself, Elene turned her own struggle into something a global platform that offers connection,

[00:00:22] Katie: I.

[00:00:23] Amanda: and empowerment for anyone navigating life with invisible illness.

[00:00:27] Katie: From thoughtful blog posts to inclusive community spaces, Eline is creating what she once needed. A reminder that you are not alone and your story matters. 

[00:00:39] Amanda: Hello. Hello. Today we are joined by Eline, um, Eline. I would love it. Uh, I know that you have a kind of wild story and you've been on a wild ride, for the last wet four to five years. I would love if you six years, if you, started out by introducing yourself and giving us some background on your journey.

[00:01:06] Eline: Well, thanks for having me. I'm really excited

today. As you mentioned, yes. The last six years have been quite a wild ride. I, I've had an accident six years ago, which seemingly was like cent accident. Um, I fell with my boyfriend and had a complex triple ankle fracture, uh, which needed surgery.

And at that point I was just very blase about it. I was like, sure, I mean, everyone breaks something at one point in their lives. But then basically very quickly after surgery, everything went wrong. And that was the start of a very, very, very long rehabilitation journey with an extreme amounts of pain. I went from a field with lots of work, lots of parties, lots of fun, lots of working out to not even being able to sit up straight in bed. I was only able to lay down because I had so much pain. And so yeah, that was a kickoff of a very, very long journey. I was living in London at the time. I am Dutch. So I moved back home after 10 months yeah, moved back to the Netherlands and that's when we still started to look for diagnoses of what is going on. And then fast forward two and a half years down the line, I finally had a diagnosis. I was working very hard with therapy to be well enough to go to rehabilitation clinic and got accepted into the rehabilitation clinic. Then basically I fell again and broke eight bones in the same leg and basically had to start all over from scratch, with therapies, another diagnoses, and basically a crazy, a, a crazy journey. So many years of therapies, I didn't want to go do the same thing again. So one point I was like, I. I am done with this. I'm gonna go into a completely different type of doing therapies. Went into the alternative route three years down the line, almost to the day next week. It's uh, it's three years. Moved countries again, and that is my crazy journey

[00:03:20] Amanda: you probably get better at telling it, Hey,

[00:03:22] Eline: yeah, yeah, of course.

[00:03:23] Amanda: the more that you practice.

[00:03:25] Eline: true. Away.

[00:03:25] Katie: So did you have to start when you broke it for the second time? It was the same leg, right? you had to start from scratch in terms of you needed surgery again, or how did that all kind of transpire?

[00:03:38] Eline: they, they told

[00:03:39] Katie: Yes

[00:03:40] Eline: normally they would do surgery, but with my history, and we'll most likely get to that later, and with the diagnoses, they said, we, we don't dare to actually open your leg and do the surgery that we need to do. So they treated it. So I was in a cost until my hip for two months and then working with braces, going back into the same rehabilitation clinic as well to start practicing as soon as I was allowed to.

Um, yeah, and that's, that's how they, they treated it, think ironically enough. So at first, my first accident was my ankle, and I always told people around me, I was like, I'm so happy it's not my knee because, for example, getting on the stairs, I would just hop on my knee and like hop on the stairs, you know, and I got very quick at doing that.

So I would use my knee as my foot at one point for quite a lot of things. And then the second injury was in my knee and my whole foot again., I really, I was like, I really need to learn how to use my leg again in a completely different way. I lost all my muscles. I got full body spasms

I had not experienced that before at all. yeah, that was just, that was just a very difficult thing. If anything, I think it, I needed to start from scratch, but it was worse than after the first accident. So I, I was, yeah, I was worse off than before.

[00:05:03] Katie: Yeah, because surely your mindset was thinking, I'm gonna literally have to go through these next years doing exactly the same thing and experiencing exactly the same pain. So you might have had trauma going on there. Right.

[00:05:15] Eline: And I was quite quickly after the first accident as well with with PTSD, which I never expected. I was like, no, I, you know, I was really downsizing and downplaying it, but I did have lots of nightmares. My body was showing all the symptoms of PTSD. and after this one, I really quickly realized I need. I need psychological help as soon as possible as well, just to kind of get me through this, because yes, actually as you said, like my mind was going, I know exactly what's ahead of me right now and I don't have the energy to do that again. that was, I think mentally after the second accident was really, really tough.

Also, because I also said after the first accident, like thank God I didn't know it was ahead of me because if I'd only known that it would take so many years and it would still not have my full physical range of mobility back, that's really tough and a very bitter pill to swallow. But then now with the second one, I did know what was, what was ahead of me, and I also. After I think half a year decided I can't, I can't do that. I can't go through the same journey not with times a week. Therapy sessions, doing it over and over and over again. And which is when I decided to, to take it onto a completely different route. Really?

[00:06:31] Katie: Did you have any, like complications or secondary conditions after the first surgery that also impacted your psychological, behavior when it comes to PTSD?

[00:06:40] Eline: I was, so, I remember waking up from surgery and I was in extreme amounts of pain, like absolute extreme. It was so much worse than actually when I fell. I mean, when I fell, I had pain. But, you know, I've played sports my whole life. I know what an injury feels like, so. I wouldn't say I was used to it, but I could handle that.

But then after surgery I couldn't. And , the doctors very quickly wanted me to walk a certain distance,, within a hospital. So the day I woke up of surgery, basically the, the morning I had surgery that late afternoon, the physio was already in the room and said, right, you need to get up out of bed and go and walk with crutches.

And I was like,

[00:07:23] Katie: Wow.

[00:07:24] Eline: Like, I just, I just got outta surgery.

Surgery before. Like I can't possibly wait there onto this leg now. And they told me I needed to wait there. And, I think that was the moment that things went wrong because my body just shut down. I fainted nonstop. I threw up all the time. Again, the pain was just unbearable at that point. I didn't recognize my own leg anymore because it was so extremely swollen and blue and purple and black and all colors under the rainbow. I ended up staying in hospital for five days, which isn't normal after an ankle surgery. Like normally the day after you get discharged and you go home.

But because I was in so much pain and they couldn't get my pain under control with any type of medication, I had to stay. they said, you can, you can basically go home once you walked a certain bit, which was kind of the distance between my bed and the toilet in our house. You know, they wanted me to do that like by myself.

So they knew that when they discharged me I would be able to kind of take care of myself at home. I never, I never reached that point. I reached maybe two steps and then I fainted again. And so my boyfriend was behind me with a wheelchair catching me every time I fainted and then , you know, to drive me back onto the hospital bed. So yes, that was definitely the moment. That. I think was the point that my body got into so much distress that that is where the PTSD started. A hundred percent.

[00:08:52] Katie: Mm.

[00:08:53] Amanda: Hmm.

[00:08:53] Katie: When you said earlier that you were almost downplaying it upon reflection, do you think that was kind of like a bit of a coping mechanism?

[00:09:00] Eline: A hundred percent. I also think it was both a coping mechanism and it was also, and a disbelief of myself was like, I've not been in war. Now knowing so much more about how trauma and the body works, I'm like, no, that was definitely trauma.

It's just, you know, how your body stores and saves an event that happened which was quite ironic because my mom is a psychologist and I come from a very open, talkative family. Like we would have always have conversations, always have conversations about emotions. she was actually the one pointing it out to me and saying like, you know, I see the signs in you.

And I was like, no, no, I don't have it. She was like, right, let's just take the test that I do with my clients and see how high you score. And then I scored very, very, very high. And that was the moment that opened my eyes was like, okay, I need to start accepting that this might be a thing. so then I went to, yeah, I went to start seeing a psychologist and started to get into therapy for that.

[00:10:04] Katie: And that psychologists did they specialize in somatic healing as well in terms of releasing the energy out of your body or, was that more of a, on a clinical basis?

[00:10:14] Eline: was also like, right now, I would've made a

[00:10:16] Katie: I,

[00:10:16] Eline: different choice. I would've gone to someone who is also somatic based, who knows about trauma in the body. Back then, I had no

[00:10:24] Katie: mm

[00:10:25] Eline: clue. I, I'd

[00:10:26] Katie: mm.

[00:10:27] Eline: of the word somatic. I've never heard of psychosomatic. So my mom is a psychologist, my dad is a doctor, so I come from also a very medical family. So we are very much around like you do what the doctor says. So the whole somatic route, I'm loving it. I'm super passionate about it because years down the line, it opened such a different world to me.

Like it, it was just mind blowing that there was so much more out there. But yeah, back then I just looked for psychologists who specialized in EMDR and I found a really good psychologist, but I, I did have loads of MDR years later. Um, also when I moved back to Netherlands, I also had loads of MDR sessions and I always felt that there was this thing missing.

Like things, you know, certain things were cleared and was, it was easier to look at or deal with, but I always felt there's something physical missing and I could not pinpoint what it was until you Yeah. Years

[00:11:26] Katie: Hmm.

[00:11:27] Eline: basically. And I started to work with my body.

[00:11:29] Katie: Yeah. So I'm interested to know what your parents thought about going down this route. Were they supportive or were they a bit like, oh, you know, this is a bit woo woo.

[00:11:40] Eline: That is such an interesting question. So I think we were all like from the, well, you also know that dealing with chronic illness or chronic pain, it impacts not only yourself, but also the people you know, your nearest and dearest. Because was suddenly unable to do things. I lived at home suddenly for like months and my mom always says, I, I did not recognize you anymore.

You were a shell of who you were after that first accident already. And so throughout those years of searching for the right doctors and also my parents, seeing how badly I was treated, unfortunately by some of the doctors, um, I think it was as much for myself as it was for them. An eye-opening experience in terms of. That there is so much more out there and that the medical world isn't always a hundred percent right.

And what I find very much with with chronic illness who fall into like loads of different buckets and loads of different expertises, there is one holistic person missing in the the western medicine system can really look at a body as, as one whole, like the body minus spirit as one whole. And. I think for my parents, it was quite scary when I started to go into a different route because I really told them quite firmly. I was like, I'm gonna stop physio, I'm gonna stop psychologist. You know, I'm gonna stop all the therapies that I'm doing right now and I'm gonna go into a different, uh, different route. But, um, I did, I did a retreat for two days and those two days completely changed my life and changed me. And I know like they, told me as well, they could see the difference already within those two days. So I think was the point where they were like, okay, whatever it is that you're doing, just go and continue to do that.

And, now again, like years down the line, yeah, they're, they're very much open to it. We still have, sometimes with my dad, I still have conversations , you know, where he doesn't really agree with how I see things, which is also fine. But yeah, they, they are very curious and very open and interested, but it's been a journey to get there for all of us, really.

[00:13:52] Amanda: I think that's so interesting, that you were taking steps to address the psychological issues, address the physical issues, but like you said, without working with a practitioner that views all of these things from a holistic lens, it's kind of like you're, you're just working on pieces of the puzzle individually, but you're not bringing them together.

And that's, that's so interesting that you like, kind of had that intuitive knowing that something was missing. That's, yeah. I'd love to go back to the beginning and talk a little bit about when you came out of that first surgery and did you know that something was very wrong for like right away?

'cause your, your pain was, like you said, off the charts. And I, I would really love to talk about that stage and, and what you were communicating and how your doctors and the physiotherapists were, receiving you. Because it seems like there was a disconnect between, you know, trying to communicate to these people like, no, this, this pain is unbearable. I'd love for you to dig into that a little more.

[00:15:12] Eline: it's a really good question. I think a large part of that was myself as well, because again, I come from this family of, you know, you do what the doctor says.

And so I think I was very much in shock mode, like, what on earth is going on? my body. I also had never had surgery before, so I didn't have a reference of what is normal. I was like, okay, maybe, maybe this is normal, maybe everyone feels like this after surgery. However, later after my second surgery, I did notice the difference and I was like, right, okay. That wasn't normal. So thank God I did have an a little bit of a better experience afterwards. There was definitely like a discrepancy. I think I, there was definitely mistakes that the hospital made. So for example, I didn't hear what they had done to my leg until 24 hours afterwards, which in my case I thought it was way too long. I had spent like a whole night there and I had no control whatsoever.

So I think that feeling of like, there is something in my leg. I don't know what they've seen. I don't know what they've done I think that was very stressful and maybe even more stressful than I, I at that point that he didn't get my, get my pain under control, which that was tough.

I was by myself in hospital. I had a room by myself and I remember a nurse coming in during the night and he told me, I don't know what's going on. I'll give you some antibiotics. that was it. That's the way he left me.

But I really stand up for myself and tell the doctors like, Hey guys, this is not okay. There's something here. I don't feel well. Um, I, I was young and I just didn't have the words, or wisdom or awareness or consciousness of my own body really be able to communicate it like that. Having said that, I do think that they could all see that I kept on fainting and I kept on throwing up. Like my body was giving such clear signals that something was going wrong, that I think they should have picked up on that sooner. And Also handled to that in a very different way. I did have some less nice experiences with the same doctor who did surgery afterwards. I felt very unseen and unheard. He didn't take me seriously at all. So that was, building on a relationship that already wasn't, strong or didn't have, like, I didn't really feel comfortable, yeah, I think it's, it's both ways. I think it's, myself being unable at that point.

Also because of the pain and shock. I, as my mom said, like I was a complete shell of who I was. That was true. I completely shut down fully so I wasn't able to communicate properly what it was that I needed at that moment. But then also I think the doctors have picked up on that sooner.

[00:18:01] Katie: Did they run through what they were gonna do, in terms of the operation before you went into theater? Or was that just completely hidden?

[00:18:09] Eline: no, it, it wasn't also what I was expecting, so they, they did tell me beforehand, we'll probably need to put some screws and maybe a plat in, but we need to go and see what it actually looks like. So I knew that they would probably do something, but they said, we just need to go in and see what, what we find.

So I was okay with that. But then also I remember them driving me down to theater and was like, expected to, to kind of be rolled in and then have being able to at least have a look around to the people around me and then them explaining, right, we're gonna give you this, now we're gonna give you that and that will make you sleep, et cetera, et cetera, et cetera. Kind of like a breakdown of, you know, what it is that they would be doing. And I was in this, like, this weird, I would always say like a coffee room, like a room before going into theater. And everyone was pulling and, and doing things on my body and, you know, with, with needles in my veins and everything.

And I was like, okay, okay, and then suddenly just waking up, being in the room again. So I was like, oh, I've never even seen the theater room. Apparently they've already, you know, done everything they had to do. So I think that whole process of the surgery beforehand could have explained better

[00:19:21] Amanda: yeah, that's, that's really interesting. And I think that in our culture nowadays, because surgery is so commonplace and especially to medical doctors who do these surgeries day in and day out, I feel that there's a disconnect and it's just, almost like a,

[00:19:41] Katie: belt, isn't it? It's

[00:19:41] Amanda: uh, exactly what I was gonna say.

Yeah. Yeah. And then, and this is the process, this is the procedure, and we just move you through each, each step of the process.

Um, but it sounds like what your, what your experience was was like very unsafe and unsure and unclear of what was happening. And then, surgery in itself is so intense on the body and to be in that state of pain and that state of shock afterward, both, consciously and subconsciously, and your body, it was like layers of your body saying like, what is happening?

[00:20:18] Eline: yeah, a hundred percent. I, I've also wondered sometimes, like maybe was it already the way that I got into surgery that made my body go like snap, like in my nervous system through the roof, et cetera? Because, I did feel very unsafe at that point. I would not allow myself to feel that I knew it, but I, and I knew that I was nervous, but I wouldn't, at that point in my life, I just would like, that would be pushed away because there was no space for that. I had to be the tough girl. I can do it myself. So that I also didn't allow myself to, to have those feelings and.

[00:20:55] Amanda: Yeah.

[00:20:56] Eline: Yeah. So I think like looking back on it, like I was, I felt very, very unsafe going into the, into the theater room.

[00:21:04] Katie: Before we started the podcast, I was talking to Amanda and I went through like exactly the same thing as you, but, with my arm. But I was only nine. so obviously that communication wasn't there because I was so young. Right. , it was through the doctors and my parents, but I just remember the extreme sense of fear that I went through even going into the pre-surgery room and, my adrenaline was pumping, so much. They actually had to double dose me with anesthetic 'cause I just refuse to go to sleep. It was actually wild. But I wonder if, like, from what you've said, I wonder if that actually contributed to everything I went through later down the line because perhaps that trauma from that experience actually just stayed inside my body and then it worked its way through getting diagnosed with Crohn's and everything.

[00:21:56] Eline: Yeah. That's so tough. It's so tough when you're a kid and you go through the, something like this, I can also imagine as parents, it must be so difficult to explain, I think in a way it should, the whole process should still be explained to as if we're all kids.

Because there is that partly down in us that is like, know, we all have our inner childs with us all the time. And if you're going through something that is so big and, and as you both said, like surgery, something so big and heavy on your body to cope with, let alone all the medications that are going through your body and. the trauma or injury or, disease or any, you know, everyone has something you don't go in surgery for nothing. I do think I already had IBS before irritable bowel syndrome, before I had this trauma. So, and then afterwards, so I was diagnosed with complex regional pain syndrome and functional neurological disorder. To me, including IBS, those are all diagnoses under the same umbrella of an overworking nervous system, like a nervous system that is completely dysregulated. So I did later on think not had IBS my whole life, I'm not maybe not really surprised having something like CRPS, which is also. A dysregulation of the nervous system and I think that was just fired up by the trauma of surgery and of that injury . So, for me, when I'm doing therapy still for myself 'cause I'm, I'm still doing my own therapies as well to, both improve but also make sure that I keep on checking in with myself. Um, to me IBS is also just as much a big of a part of that as the other two diagnoses of after the accidents.

[00:23:42] Amanda: Yeah. Different region of the body. But, , I a hundred percent agree with you that these things are like. Likely all related because our nervous system touches every part of us.

[00:23:54] Eline: Yeah.

[00:23:54] Amanda: So how long did it take you, I know you spoke about how, you met with a psychosomatic somatic, physiotherapist, and this was the first person who kind of put you onto this idea that, of the brain body connection of the nervous system link between the pain. How long did it take you before you met this physiotherapist?

[00:24:22] Eline: That was over one and a half years after my first accident. I had no

[00:24:29] Amanda: Wow.

[00:24:30] Eline: that this existed like zero.

[00:24:34] Amanda: for that one and a half years, you were just in extreme pain. And, and unsure of why.

[00:24:43] Eline: Yeah. So the first year

[00:24:45] Amanda: Wow.

[00:24:46] Eline: go to physiotherapy for the first months, but I was in so much pain every time I got away from that. So my fear of going to physio was like building up and I would go, because again, I, I had the same mentality back then, like, not allowed to feel the sphere. I'm a tough girl.

I can do this, you know, I should be able to do this so that was really my fighter's mindset mode. But I was terrified going there because every time I came back, I wasn't tears for days because, pulling and pushing and I, I don't want anyone to touch my leg and it's just hurting and it was blue

so did go see a physio in the beginning. And then I had a, um, like a check-in with a doctor after a few months and he was very dismissive, saying like, well, you should have been able to walk right now already, so I'm just gonna send you to pain clinic. And that was it.

And he was like, yeah, I can give you some Gabapentin, which is like an, um, anti-epileptic, pill, which sometimes they use as well for chronic pain. So they put me on that and then basically they taught me won't be able to do anything anyways anymore I was 25 at that point. I needed to work. I could not do anything. I couldn't work and I, I needed to pay my bills.

So I was like , I'm 25 years old, I'm not gonna. another seven months until someone is gonna have a look at what is wrong with my body. So that was the moment that we, that we decided to move to the Netherlands also to be closer to my support network because I needed so much help. And so that we moved to the, to the Netherlands.

Um, I had another surgery that was exact, almost exactly a year after the first one. I had another surgery to take all my screws and plates out because they said, no matter what it is, that's step one that we would do because screws and plates can really irritate the nerves and the muscles and tendons. So it's like, okay, fine, let's do that. And then afterwards I wanted, really wanted to push for a rehabilitation clinic, and saw a rehabilitation doc in the hospital and he said, he literally said, no, we're not gonna send you to rehabilitation clinic because I believe that you can get better. And then in a rehab clinic, they will just. Teach you how to handle and deal with the pain and not make you better. And I wasn't shocked 'cause like if anything, what I

[00:27:10] Katie: Wow. Yeah.

[00:27:11] Eline: is not the purpose of a rehab clinic. And you know, they can really help out. But he was just adamant, he was like, no, we're not gonna send you there. You can do it by yourself.

So then for six months I had an alarm going off every 15 minutes to do an exercise and I drove everyone around me because every 15 minutes there was an alarm going off to do exercises. And then at one point, like half year in my mom was, my mom was quite desperate and we had a, a quite a big conversation where she was like, you need to go and see a physiotherapist.

And I told her, I was like, mom. What, what will I do there? Like I can maybe do something for two minutes and then I have 28 minutes left of a session that I'm unable to do anything. Like I, don't know, how on earth are they gonna help me? Like physio was way too much for me at that point. And then through a colleague of hers, she heard for the first time about a psychosomatic physio. And by coincidence there was one who was specialized in chronic pain around the corner of my house. so that's when I was like, okay. I read up on her and I read up on what psychosomatic, uh, physio is, and I was like, this sounds like something I will be able to do probably. But there was the first thing I, I felt was like, oh wow, maybe this is someone who can actually help me out. so I started to see her twice a week for a year. And then at that point, after a year, I was well enough to actually go and get accepted into a rehabilitation clinic because now with the knowledge of now, I know that they wouldn't have accepted me at that point when I wanted to go, because I wasn't, like, I wasn't able to do things that they would have me do. So yeah, it was, that was the first time I heard about, um, a psychosomatic, uh, psychologist or a physiotherapist. and she did teach me, so like I had my first proper pain education with her. She taught me so much about what is pain. Everyone knows pain, but what actually is it? What does it do in your body?

What does it do with your brain? does it work? And it, it made so much sense because I had all these, like weird symptoms as well, like brain fog. My memory was awful. I couldn't focus. I, I had like blurred vision and like now I know that all of those things were all hard of the fact that I was just in so much pain the whole time and my body and nervous system completely being dysregulated. So things really started to make a lot more sense. And she just taught me a lot about the mind body connection. Still very much from a, western medicine type of approach. So very much of like a biological, physiological approach. Only years later, after my second accident, I started to, Learn more about the somatics and also energetic, you know, energy work and energetic somatic work and going to your feelings and emotions more. So she taught me, I think that the theory behind everything and then later on I really dove deep into the practice of it as well.

[00:30:30] Katie: Can you tell us a little bit about pain and what it does within the body?

[00:30:34] Eline: Yeah. So the thing that was mind blowing for me already absolutely is that is no such thing as pain signals. We always talk about pain signals, but there is no such thing because the signals that your body knows or perceives is temperature differences. pressure differences and acidic differences. What it then does is that signal, so that piece of information goes to your brain, and your brain is actually analyzing, oh my God, this is, this is an alarm bell. This is dangerous. We need to make sure that we put that signal back to the right muscles to help you get rid of that danger. Or like go move away from the danger, which is the , fight flights, freeze phone mode, basically. So I was already mind blowing because all I could feel was pain so that is actually my brain creating this signal.

It wasn't necessarily coming from my leg itself. And there are parts of your brain that analyze if there's danger or not. And if very often, if you, if something big like a trauma happens, that piece of information gets stored into your brain and then it's trained and it's getting trained to analyze it better and better and better, whether you're in danger or not. When something big like a trauma happens, that part of your brain gets overexcited in terms of how quickly you are in danger. So it's like, a fire alarm that goes off when a fly is zooming around rather than when there's actually a fire going on. That's how I basically always explain it.

So we wanna train that fire alarm, so that piece of your brain not go off anymore when there's just a fly flying around, but you need to retrain that part of your brain that you are actually safe, that your body is safe, so that it will only go off when there's real, proper danger. And so that is basically what, yeah, what pain is.

And in the end, for me it was also really helpful to realize that my brain. My body, like my brain. And my body was only doing the job it is meant to do, which is to protect me. But it was just doing it a little bit too well

[00:32:49] Katie: Yeah. Like super overstimulated.

[00:32:51] Amanda: I think it's interesting that you said that you didn't receive a proper education on what pain was until you met with the psychosomatic. Physiotherapist and that you were sent to a pain clinic

and basically just given

[00:33:09] Katie: A drug.

[00:33:10] Amanda: medications.

[00:33:11] Katie: Hmm.

[00:33:12] Amanda: That's very interesting to me.

I shake my head.

[00:33:17] Katie: I also think it's so wild how pain in terms of your brain receptors, how pain and like holding yourself like this are the same. So if you're actually like getting stabbed with a needle and you held the other arm, you wouldn't feel pain.

[00:33:32] Eline: With like, why, you know, if you bang your elbow to something and you, you rub over it, we all do that automatically, which is actually such a great, thing because what you do is you cover a bigger piece of the area that what you bang your elbow in, you rub it.

So you give new stimuli to your brain. That part is actually going quicker than. The signal that, you know, analyzes that you are in pain. Hence why we all rub our elbow when you bang yourself, because you kind of trick your own brain in a way. We do that all automatically without knowing why we're actually doing it, but it's basically we're tricking our own brain by doing that, which I think is,

[00:34:13] Katie: Yeah, it's like a habitual thing, isn't it? Before we started recording, me and Amanda were. Saying how much we loved your Instagram and how we think that like your highlights are super cool. And you mentioned wanting to create what you didn't have. So I'm talking about, you know, your community where people feel, safe and seen. So what are the, what are some of the key elements you believe make a healing community truly inclusive and supportive?

[00:34:42] Eline: Oh, I love this question. This is such a good question. Um. To me, it's a place where everyone feels like they can share everything they wanna share, whether it's a bad day, whether it's a good day, whether it's something very painful, whether it's something very joyful. I want everyone to feel safe share whatever it is they need to share. So having a closed off group, knowing who's in that group, you know, doing a, check, not having everyone come in and out all the time. I think safety is very key, especially because so many of us have been dealing with this for years and probably, well, not probably, I can actually say of us have had experiences that were just not nice, where people reacted very dismissive around their symptoms or very. Patronizing about what they were going through or, you know, asking questions like, why, why are you able to do this now? And yesterday I wanted to go out for dinner, with you, but you can, you know, like those kind of comments. So I really want people to feel safe within a community, being able to share, so feeling safe enough to share whatever it is they wanna share. And also help each other out to reflect and self-reflect on your own journey. So at this point, there's no one in my community, and that's not by choice, but that's more the people that I, I think I attract. There's no one in there who says, oh, this is forever I'm gonna lean back and sit on the sofa and not do anything anymore. So everyone has this, this feeling or this little whisper or this little spark inside them that there is still something out there that might make them feel better and with better. I'm really like, I'm using this word, but I don't mean like, I don't wanna touch upon people's ableism, you know, I don't wanna say with better a hundred percent super fit person who can run marathons,

like better to me means able to live the life that you want to live. so that's just a little, a little side note, but everyone in the community at this point has this certain spark curiosity and is open to receive new feedback, new input, new healing modalities, knowledge as well. And I think to me, that is. very big difference to what I've seen in other support groups where it's very much, and this is purely speaking from my own experience of what I have seen and how I have perceived it, but it's very much doom and gloom and very much focus on medication. Like, oh, take more medication. Take more medication.

That's not what we do with the community. We could share some things about, you know, these type of medication have helped me, but we're not, that's not main focus we're very much more about, you know, believing that we, your body is there to help you and your body can heal you as well. And you just need to find the, the key and the right buttons to push and to turn to get your own body into a healing state.

And that is done with so much therapies and so many different types of modalities and, and sessions that you can do. But there is something for everyone out there and I just hope to. Give everyone a very low key way of experiencing those kind of sessions. So we have guest speakers every month. They're an expert in a certain, topic or healing modality. They come and do a workshop because I want to people the low key way of connecting with different healing modalities without suddenly having to spend loads of money or immediately doing a whole program with some someone, because then you feel what resonates.

I strongly believe that. I really strongly believe that you, if you're in a session and you're hooked because you're like, oh my God, this is amazing, or this is super interesting, you know, that, you know that feeling, they can take it away and, you know, maybe book a session with that person.

[00:38:37] Amanda: Yeah. Even just having the opportunity to gain awareness about different options, because one of the things that I have noticed, or if I look back on my journey, I'm sure both of you can relate to this, but I. As you're navigating chronic illness and dealing with these symptoms, there's a point where something new comes into your awareness, right?

And someone will say, well, I tried this and it, you know, this supplement, this healing modality, this thing. And it can be very easy to think, oh, maybe that's gonna be the thing. Maybe that's gonna be the thing that turns this all around and fixes me. Right? And it can be so easy to get, pulled into one specific thing and put all your hope in that basket.

And ultimately, what I've learned after years of navigating this is it's often not one thing. It's often a collection of things. And you find these are all of the helpers. That support me in my life to feel my best, but it's not just that one, that one thing. So to be able to have a place where you can share that information, a little bit of this and, and a little bit of that with your community, I think that's really beautiful.

[00:40:02] Eline: Yeah. Thank you. I think that was exactly the intention of doing, like setting it up like this. Yeah.

[00:40:07] Amanda: Yeah. That's amazing. Do you feel, in speaking with people in your community that this is kind of like another layer of healing for you to be able to be that support person for others?

[00:40:20] Eline: A hundred percent. A hundred percent. Because. First of all, just to realize for myself how far I've come as well, you know, when you hear symptoms of others, I'm like, oh yeah, wait, that was also part of my story. That was also part of my journey. But I also know, I I, I'm also still continuing to heal and having this power of the community really support each other and to not have to overexplain yourself a thousand times or with many words other people to realize what you're going through or in it.

And I think that's support is so helpful and I really wish your younger self to have that as well at that point, you know, having a community a group of a few women who understand. What I was going through and could help me, guide me into certain directions. I just wish for my younger self to, to have had that as well.

And for me now, it is definitely still helping in my healing as well because like I, yes, I'm further down the line, but I'm on the other hand also still in it. Like I'm still, I'm still in my wheelchair. I'm still using my crutches. Yes. I can now walk certain parts as well without crutches or without any mobility aid, but I'm also still there.

So I'm, you know, I feel like I, I'm, I'm still in both positions, like I'm here as a coach and I can help other people because of the tremendous amount of knowledge I've gathered over the last six years and experiences I've had

to lead a community where I really feel like I'm saying lead and I feel like, no, we're doing it all together. I don't wanna put myself out there. I'm facilitating the group, but we're literally all in it together because everyone is engaged, everyone is joining in, and everyone is super supportive.

It's just amazing to have that from all different aspects and, angles.

[00:42:11] Katie: Mm. That's beautiful. If you could speak directly to someone, like, with all that being said, if you could speak directly to someone who's just been diagnosed right, and is feeling super overwhelmed, what would you want them to hear first?

[00:42:25] Eline: Stick with your own gut feeling. Be radically honest with yourself. Are there any feelings that you feel that you are dismissing? Is there anything you're experiencing that you don't want, that you don't agree with, or that you don't wanna feel that you don't wanna see? Ask for help when you need it.

[00:42:42] Amanda: I was just going to say from a chronic pain perspective, because I find there is such a limitation on information out there. Like we said, you go to get referred to a chronic pain clinic and and you're handed medication. I would love to hear about some the tools that have really been. Key for you in managing chronic pain, whether those are physical therapies, uh, mindset work, whatever it is.

I would love just for someone who's listening to this and maybe has been dismissed or been experiencing chronic pain and hasn't found the tools, I would love for you to share some of the things that have really helped you.

[00:43:25] Eline: Wouldn't say lifestyle change, being radically honest with myself., I did look at my lifestyle, so I, at one point you people with chronic pain would really understand you don't have a choice anymore. Like you need to listen to your own body. I basically, I don't really drink anymore. I very, very rarely drink alcohol because I now very strongly notice once I drink alcohol, even if, if it's one glass of wine, my pain levels go up. Straight away, so I looked at that part of my life. I started to move at a pace that was good for me, which was Pilates. And I did a private Pilates the classes I was very much unable to do. So the movements were very, very limited, but at least I started to move my body and focus away from my leg the different parts of my body as well. Once I started to learn how to move the rest of my body as well and realized that my body was so much more than just my leg, I could train my arms, I could train my core. You know, if I had spasms, I knew I, I had to stop or like, you know, and that was the way I started to learn. Where my boundaries were, where my limits were, and not only but also mental and emotionally. I started to suddenly feel boundaries a lot more, which is something I hear a lot from people with chronic pain.

Like, how do you train until your boundary if you don't even know what your baseline is? And so doing something like this helped me to figure out what my baseline was and what my boundary, was, and then move from there. So it was lifestyle, movement, and I started to really face my emotional side. So I had, I've had a psychologist for. All those years. But I knew there was a very much an emotional side that I wasn't, gonna touch or I, I could talk about my emotions very easily. I couldn't really feel them properly. And that to me has made a massive, drastic difference when I decided to too, not hide away anymore. Let the tears come out anger, I still have a little bit of difficulties with, but also that like teaching myself how to feel emotions and truly feel them. My twin sister and I, we always say like, you know, we're very good at journaling because we write down everything like in observer mode, you know, we write down everything that we're feeling, but actually feeling it. We just didn't do that. And that was, to me, a very, very big, big difference as well. And it really does take some self, very honest, self-reflection. You know, looking at yourself and be like, right, these are things I might need to start looking at now and make the attention, like, it's not that I was suddenly crying every day. It's goes very small steps and having the right guidance. And one day I could feel, the sadness very profoundly. And then the other day I was like, I feel like numb. Like, peel down the skin and go deeper and deeper to start to really feel your emotions. I think those three things are movements, lifestyle, and start to truly feel your emotions are the big, the big life changing things that happens for me.

[00:46:48] Katie: I love

[00:46:49] Amanda: I love that.

[00:46:50] Katie: Yeah. I feel like there's so many people that don't their emotions or they're not in tune with them. And they don't even know where to start.

[00:46:59] Eline: And I see this, I actually get people who are just like, I don't have chronic pain, but can I still come because I just want to get more in touch with my body and my emotions again. I'm like, yeah, you know, that's perfect.

A chronic illness or chronic pain or burnouts or feeling overwhelmed. I think those are all signs of that have been stored in your body that are screaming for attention, but you're kind of like facing away from them, you know? Just like, Nope, don't wanna see it. Don't wanna feel it. I'm gonna move into a different direction. I,

[00:47:31] Katie: Mm-hmm. Did you, Amanda, did you go through that when you came out of the Army?

[00:47:37] Amanda: Yeah. It's funny you ask that because I was thinking about that earlier, Elene, when you were sharing about your thoughts on trauma and how your mom was saying, you know, you're showing signs of PTSD and you just didn't even wanna entertain that. You're like, no, I'm fine. That like spoke to my core because I had the same thing after coming back from Afghanistan.

I had family members who are trained as social workers and trained in mental health and addictions saying you have PTSD and my limited awareness at the time was, no, I don't because I'm coping fine. Like I perceived trauma as. Somebody who wa you know, someone who had PTSD was a person who was unable to cope in their life and I was coping, therefore I didn't have it right.

Um, so it's interesting because we do look at things from like an all or nothing perspective and, and don't really recognize that there could be massive things happening within your nervous system, even if your mindset is still focused on like, no, I'm fine. It's, it can be two things happening simultaneously.

[00:49:03] Eline: Yeah, I was thinking when I said that, I was like, I wonder , what it does to you. And I also think, maybe you also agree with that. Like I've heard about PTSD and you see it on TV and you see it on series and films, et cetera, and then suddenly you're in it yourself and you're like, no, that's not happening to me.

[00:49:20] Amanda: Yeah. Yeah, I remember, um, after coming back from Afghanistan, we, we go through, a process of, kind of reintegration and, they give you some education on PTSD and they, I think it was like a 10 minute, film that they show you. And, it's like how to recognize PTSD. And it basically shows like, you know, you're gonna turn into an alcoholic and you're going to be, you know, self isolating and reclusive, and you're gonna be really angry and having flashbacks.

And this, this picture that they present is like. This is what PTSD looks like. And so if you're not that, it's you don't make the connection. You're like, oh, that's not me. Like I'm, I'm fine. And not recognizing what I, what I know now is there's such a spectrum of experience and if you're a high achiever, if you're a person who's kind of goal oriented and like, you gotta just keep going, we tend to believe that these things aren't happening within our nervous system.

[00:50:36] Eline: Yeah, I completely agree with that. So interesting. 

[00:50:40] Katie: so what's next for the Spoonie community then? Um, how can our listeners perhaps support or get involved with your work?

[00:50:50] Eline: Well, I'm opening the doors once per three months, and for now I'm opening the doors on the 1st of May, which I've actually not announced on Instagram yet. So you've got. A debut there. The doors will open on the 1st of May and they'll be open for five days, and then they will close again for three months.

Again, I do that on purpose for the sake of the safety feeling that I really want to create and have in a, in a community. So they, yeah, people can find me on Instagram, which is the Spoonie community, reach out. There's loads and out there. But also feel free to send me a DM and I'm happy to share more the community. I'm also happy to share more about my coaching program, which I've got. yeah, so that's, that's where people can find me and where they find more information about the community as well.

[00:51:40] Eline: Gonna ask you a question, both of you,

[00:51:42] Amanda: Yeah.

[00:51:43] Katie: Yeah. Yeah.

[00:51:43] Eline: of your journeys, what is the biggest eye-opening lesson that you've learned, learned throughout these years?

[00:51:53] Katie: You can

[00:51:53] Amanda: Mm.

[00:51:54] Katie: if you want, Amanda, or I can.

[00:51:59] Amanda: Yeah, you go ahead. Let me think on that for a minute.

[00:52:03] Katie: Um, I would probably say that, learning that I was not invincible took time to accept because, I had a super high pressured, stressful, performance based job, which entailed me traveling around the world, which was great. But, know, the burnout was real. I was also a competitive bodybuilder. I was also a competitive horse rider. I was just burning the candle at both ends. And this was even after I got diagnosed with Crohn's, I was still going and wondering why, nothing was getting better. So I think once I accepted that something needed to change and I actually built up the courage to quit my job, which took a lot because that would just turn my whole life upside down. , it wasn't until I went through those really hard times, which excelled my growth. Do I now reflect back and think, yeah, that was my blessing. So I think that was like the turning point for me. But it took time. You know, it took time to build up the confidence to actually do that.

Um, but yeah, that was really pivotable in my journey.

[00:53:18] Amanda: Hmm, I can relate to that.

It's still, it's still a little bit of a soft spot. Hey.

[00:53:23] Katie: Yeah, it's still sore, you know.

[00:53:25] Amanda: I think for me it was just recognizing that the journey is never over. I think that I'm a person who has always looked at the end goal and always focused on the destination and in the healing journey. I think I, I looked at the world from that lens for quite a long time. The, and not even in a conscious way, but just, okay, if I can just find the right diet that, and just eat in that perfect way that manages my inflammation, then I'll be good.

Then I'll be happy, then I'll be healthy and if I can just find the, the right exercise routine that supports my body, then I'll be happy. And I started to finally recognize that that way of thinking was causing me harm. It was setting up expectation and not allowing me to just be present in my life where I am and being happy now, in the now moment.

And I was always just setting my sights on the future. And it's still a work in progress, kind of like you said, elene, you can be a masterpiece and a work in progress at the same time, and you can be still healing and be happy and joyful at the same time. But a lot of it has to do with mindset and stopping that constant chase, that constant pursuit of perfection, which, has always been a huge theme in my life.

[00:55:13] Eline: yeah. That's beautiful. I wonder for both of

[00:55:16] Amanda: Yeah.

[00:55:16] Eline: I resonate as well with what you're both say on different levels, to me, was a very pivotal moment as well when I let go of goals because I was always striving to, you know. I wanna walk in three weeks, I wanna walk a hundred meters. And then those three weeks passed and I was disappointed in myself.

And then I was like, you know, and also from the therapists around me, they were always asking, what's your goal? What's your goal? You need to have goals because the goal, you're motivated to work towards that. And I, at one point, let go of all the goals. I let go of the word goal. I changed that into an intention because I felt that was a lot softer and kinder towards myself. You, Katie, coming from like, you know, a very competitive background and then you, Amanda, with Strive, always striving to, being healthy and doing this, and then that's what happened. How did you, both of you manage the goal setting people around you and yourself?

[00:56:14] Amanda: Yeah, I think like you, I started to, because I'm. A very goal oriented person and like, we're very much taught that aren't we? We're, we're taught that if you listen to motivational speakers and, and coaches and they say, set goals and make sure there's smart goals and this is how we achieve our goals, and it's so focused on that, that destination, that goal.

And like you, I've, I've also learned to soften and learned that often when we set these goals, it's because we believe that something is going to get better in the, in the achieving of that goal, right? Like we, it's not necessarily about the specific goal. It's, we think that we are going to be happy when we reach that goal.

So we're kind of like, we're putting our happiness at the end of that finish line and. So I've, I've done the same, I've, really let go of being so goal focused and starting to say if I'm, if I'm incorporating something into my routine, whether that be a way of eating or a way of moving my body or, or just something in, in my daily life, it's, I've started incorporating these things with the intention that I'm doing this because it supports me, not necessarily like I'm going to the gym because I wanna lose 10 pounds.

Right? It's just kind of softening around that whole goal process entirely.

[00:57:52] Katie: Yeah, I think definitely, sopping out goals for intentions was a huge one. And also having the intention of learning how to slow down was massive. Because when you are like, I'm an Aries, I'm like all about smashing the goal. You know, I could never train and my coach would be like, just go to failure.

Well, no, no. How many reps is that? No, no, just go to failure. No, because I will keep going until I break my legs. So I've always been like super goal orientated, even when it comes to small things like that. But actually setting the intention to learn how to slow down and to completely reverse engineer that but still having aspirations.

Right. I think using mental contrasting through that, so say having like a big goal, but using mental contrasting and breaking that down into smaller goals really helped too, because you're not then using visualization and just thinking about the big goal all the time and potentially overwhelming yourself and creating anxiety around that, which is then just gonna cause inflammation and symptoms.

It was more like, let's just break this down into smaller bite-sized chunks and give yourself some compassion and some space to actually get there. So yeah, it was an interesting journey, but I still, I still have like big goals and big aspirations, but I just take a, a softer approach and I love the fact that you use intentions to do that because that's something that I definitely use in my daily practice and what I teach my, my clients to do too.

So yeah, it just takes that level of intensity out of it.

[00:59:26] Eline: I love that.

[00:59:27] Amanda: That was a great question.

[00:59:28] Katie: That was, I loved that one. never get, we never get asked questions,

[00:59:32] Amanda: I know. This is great. We should have you more often.

[00:59:37] Eline: I would love that.

[00:59:39] Katie: Q and a commence.

[00:59:42] Eline: I love it

[00:59:43] Amanda: Oh

[00:59:44] Katie: Oh, and I also was thinking about extrinsic and intrinsic goals as well. And I think you touched on that, Amanda, when you were talking about setting goals, not just for, you know, a specific weight or wanting to look good for holiday, but really, leaning into setting, intrinsic goals. So it's all about how you feel and performance based goals and things like that.

So you can still set goals, but on a, a healthier scale rather than, yeah. Solely, being about like the way you look 

[01:00:12] Amanda: yeah.

[01:00:13] Katie: Yeah.

[01:00:14] Amanda: So if anybody listening, relates to you, resonates with what you're sharing and would possibly like to follow you online or join your community, where can they find you?

[01:00:26] Eline: it a little bit before, but you can find me on my website, which is www the Spoonie community.com on Instagram under the same. So that's the Spoonie community on TikTok, under Spoonie community on thread, the Spoonie community. I, I would say out of all of those, Instagram is probably the best because I am very much online there and visible , and always like really, really, really feel free to send a message to send me DM because don't want anyone to feel like, oh no, I can't contact her or anything. Like the door's very much open, so I invite everyone who wants to send a message to send a message.

[01:01:10] Amanda: Well, thank you so much for being here today and sharing your story and I love what you're doing. I love the community that you're creating and I think that these conversations just have to happen more because there are so many people out there who feel very alone in their journey. So I love that you're creating a space where people feel heard and seen and supported.

I think it's amazing.

[01:01:35] Eline: I really

[01:01:36] Katie: Yeah.

[01:01:36] Eline: It was really nice.

[01:01:37] Katie: Thank you.