Epilepsy Beyond the Ordinary

What happens when ordinary deja vu becomes something far more complex? In honor of Epilepsy Awareness Day, join us as we uncover Emma's extraordinary journey with epilepsy, a condition she was unexpectedly diagnosed with at the age of 23. Her story is a testament to resilience as she navigates through the labyrinth of symptoms and misdiagnoses, revealing the often-overlooked intricacies of living with epilepsy. Emma's candid recount of a pivotal episode in Sri Lanka and her subsequent advocacy work offers a compelling look at the need for greater awareness and understanding of neurological conditions.

Emma's experiences paint a vivid picture of the emotional terrain that accompanies chronic illness. The gap between personal reality and public perception is stark, where "I'm fine" often masks a complex struggle. This conversation sheds light on the critical need for empathy and a deeper understanding of those living with chronic conditions. By sharing her personal experiences, Emma hopes to bridge the disconnect, offering insights into the hidden battles that many face and the importance of fostering a supportive community.

Art becomes a beacon of healing and expression for Emma, transforming her journey with epilepsy into a creative force. Her venture into illustration and storytelling is not only a means of personal acceptance but also a way to connect with others facing similar challenges. Through her work and collaborations like "Beyond the Ordinary," Emma champions resilience and neurodiversity, highlighting the profound impact of creativity as a tool for coping and building community. Tune in to explore how personal struggles can redefine success and lead to a powerful story of growth and empathy.

https://linktr.ee/byemmadearling

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Chapters

• 0:00 Emma's Journey With Epilepsy
• 11:09 Navigating Life With Chronic Illness
• 20:30 Expressing Acceptance Through Art
• 28:24 Navigating Personal Training With Chronic Illness
• 41:16 Discovering Empathy Through Personal Struggles
• 44:32 Celebrating Resilience and Neurodiversity

Transcript

Jen: 0:09

Welcome back to my Spoonie Sisters, and today we are thrilled to welcome Emma to my Spoonie Sisters. Emma is an incredible illustrator and advocate who uses her creativity as a powerful tool for healing. Diagnosed with epilepsy at 23, she has channeled her journey into art, therapy and self-discovery. Emma is also a personal trainer and co-author of the number one bestseller Beyond the Ordinary Discover the Power of Creative and Neurodiverse Women. She's here to share her story, talk about raising awareness for epilepsy and explore the diverse coping mechanisms that she has embraced. So let's dive in and learn more about her inspiring journey. Hi, emma, and welcome. How are you today?

Emma: 0:56

Good, thank you. I think to go off on tangents and forget the question, so this could be interesting it can be interesting, but you know what?

Jen: 1:04

I'm here for it, and I think Andy is too. We're excited to chat with you and hear all about you. Do you mind telling us your diagnosis story?

Emma: 1:13

I actually got diagnosed at 23. I think I actually had epilepsy maybe a year or so before that, but wasn't aware of what it was because I've only ever thought of epilepsy as one kind of thing in a very ignorant sense. I was very ignorant of my own condition because I didn't know that there were so many different types of seizures. So when I was diagnosed I had like a buildup were so many different types of seizures? So when I was diagnosed I had like a build-up over quite a few years of having these little weird moments, I would say, where I would be at work or somewhere familiar, and I feel like I'm having deja vu which sounds like a really like oh, everyone has that, but it's the different level of deja vu. And I thought, oh, it's probably because I've been here before. It's a different level of deja vu. And I thought that's probably because I've been here before. It's a bit strange.

Emma: 1:55

And then I kept having some weird things going on in my eyes and I was like it feels a bit odd. So I went to the dieticians and then they did a check on my eyes but your eyes got something. Something's a bit wrong. So we're going to send you to back to the doctors, and the doctors are going to refer you to the hospital, and this goes back and forth. Long story short, that wasn't anything. I was still like, well, what's the problem? Then I was like these things are still happening and it's still really bothering me, like can I have another opinion? So I went back to the gp and he sent me to a neuro neurologist oh, my god, I can't even remember his name, um and he. He didn't get back to me until like nine months later, because the waiting list is so long, obviously because of the nhs. It's um, well, you get seen when you get seen, and if it's not that important, as in, I'm not like a kind of person that would drop to the floor, have fits and hit myself or anything so I was low risk at that stage, went into that appointment with my mum first five minutes I was in there he diagnosed me like like

Emma: 3:00

that and all I remember him doing is looking into my eyes with a telescope, one of those weird I don't even know what they're called things. He took my knees and he was seeing my reflexes and then he goes yeah, you've got epilepsy. This is after me saying the symptoms and I thought what do you mean? I was like I don't have epilepsy, I definitely don't. I don't drop to the floor or anything, I just feel a bit funny. I thought I was just gonna then go home and tell me you need to do some like meditation or something, as in. I wasn't expecting you've got epilepsy.

Emma: 3:30

It was like what the leading up to that is, in the nine months that I was waiting, when I went to Sri Lanka after I'd graduated from university, I did the typical oh my god, I'm gonna go like help and be a volunteer in another country, because apparently that's what all British people will have to do. So went, I went to Sri Lanka volunteered with a friend. It was there that I was more worried than I'd ever been, because every other time I'd had an episode of deja vu. I was in a place that I'd been with before, around people that I'd known, so I thought it's just deja vu. That was the time that I was in a country I've never been to, surrounded by a group of people that I've never met, and I thoroughly had a meltdown and panicked. I was like, oh my God, this isn't right, something's not right, really not right. I went full panic mode, sweating, freaking out, had to be taken away from everyone, sat down like are you okay? I was like I don't know. It lasted for a good five to 10 minutes and then I was fine, wait for a good five to ten minutes. And then I was fine, wait for hospitals out there. They said, wait till you get home. You've got, like, an appointment, it'll be okay. Then, obviously, nine months later, they're like yeah, that was, that was a seizure, you were having a seizure. I was like, oh, I didn't know that was a seizure. They're like yeah, there's 40 plus different types of epilepsy and they do not look the same. Everyone thinks of just the one, because that's the one where you mostly get hurt. Obviously you have to think about how to make sure you're safe. The deja vu one didn't add up to me because I'd never heard of it. And why would? I was completely oblivious to that, even being a thing with any condition. If you'd never heard of it, why would you know?

Emma: 5:10

I found out when I was 23 and everything kind of went a bit downhill from there. Not gonna lie, I was very overwhelmed with the diagnosis because I'd been driving since I was 17. And that day they had to take away my license. So the independence of myself was kind of lost. I was like how am I going to get to work? How am I going to do this? How am I going to do that?

Emma: 5:33

I was very much like, but I've always been very independent as a person. I drove to and from uni all the time, even though it was an hour and a half drive for England. That's really far, by the way. I feel like it's not the same in Morocco. Um, it was, and I always drove myself to work. I did my own shopping, I lived with my parents, but I still did everything for myself and I felt like I was back at school, being like mum, can you take me to work? I was like I feel like a child. I hated it. That was a bit of aspiring into like depression, anxiety, things.

Emma: 6:02

So then started with medication. Ironically, since I was diagnosed, the epilepsy got worse. Then I did start to have seizures where I collapsed. One of the most memorable ones was my boyfriend and I had just been to the gym. We left and he was about to drive me home to be at home by myself, which is why I was it's a bit scary and went to get in the car and he was like are you okay? I was like no. He said that's the first time I'd ever said no, because I normally go no, no, I'm good. I'm good like because I'll just try to brush off and it's fine. You know, whatever, there I went, no, it's like he went like white as a sheet and he went around the car to catch me or ask us okay. I completely dropped to the floor, said that my legs went like stiff. Sounds horrible. Impression is not a nice one all I remember was saying no.

Emma: 6:48

I remember having a dream about unicorns, which is hilarious, I think, because I was there like my own little bubble, completely unfulfilled, having a great time. Unicorns which is hilarious, I think, because I was there like in my own little bubble, completely unfocused, we're having a great time. And suddenly I hear Emma, we're here, emma, okay, can you hear us? And they go sir, am I having a nap? Completely disassociated the situations with each other.

Emma: 7:05

I woke up to the ambulance team par tea, paramedics around me, my boyfriend there. They're going hold up, what are you doing? I said, oh no, you don't. You didn't need to call them, I'm fine. He's like no, you're not, you just dropped to the floor. I was like, yeah, but that sometimes happens, it's fine, like it's not over five minutes, you don't need to call anyone.

Emma: 7:26

He was terrified because he'd never seen me actually have a seizure in person. I think for him it's more like the panic of that and he had the first thing he thought to do, which is perhaps a thought straight away. Luckily they were about five minutes down the road. It's just lucky they were there, because otherwise that would have been like a couple of hours and I would have recovered, as it were. They checked my bloods and did everything and I said I'll speak to the. They're more worried about him than they were about me because he looks so shocked at seeing me so vulnerable and completely unresponsive that he was terrified. He was like I've actually thought you might have died. And then he was like, but then you were moving. So I was like it's fine.

Emma: 8:05

So I ran inside and so he tripped over the step gate into the house because he was panicking. I mean, bless him, he was absolutely brilliant. But I was like, do you want to take him into the hospital or not? Me like, it's fine, I was just. It was just very awkward. The reason. I remember that. So that's the time I realized because you physically see it, how much my diagnosis affected other people. Because I don't see it, I didn't really think anything of it. I sound, not anything of it. There were a lot of emotional attachments and things like that. Physically, seeing him like that freaked me out because I was like, can I actually look that bad? Like does is it really that bad? Because I don't. I'm there going, I'm asleep. Basically it feels like, and then I wake up. That's just that hole in between the stuff. Yeah, so that's happened for like a number of years or whatever, but that was obviously quite two years in um question was that? How do I get into illustration from that, wasn't it?

Jen: 8:57

yeah, but I want to interject for just a second. I think in andy I don't know if you have any experience with this as well, but I think if, if you're experiencing it yourself and of course this depends on the kind of seizure right, you don't see what you look like, you don't see what's going on, and so for those around you like like he was absolutely terrifying, absolutely terrifying. They're not used to seeing you in such a way.

Emma: 9:23

It just kudos to him for not falling flat on his face, you know I felt also because, um, he I'd spoken about it and he'd never seen it. It was almost like just a thing. It just didn't matter. Not didn't matter, but it hadn't been a thing in our relationship because at that point I think we'd only been together like a year or so. I remember the first date we went on my mum said tell him you have epilepsy in case something happens, picked me up in his car and I said just to let you know I have epilepsy, so if anything happens. It's a bit weird. He's called my mum. I showed him like my phone thing. I was like I know, what if that happens?

Emma: 10:04

it happens because I was very open about it. It was only till about a year, two years in, he'd actually seen me have a seizure where I collapsed. I think that's why it was such a shock, because he's seen you so normal, whatever that means. It's been a very weird experience for him to suddenly see me as this really vulnerable person. It's very difficult, um, because obviously we built a relationship over that time and it wasn't just like going on a date one time doesn't matter. It was like fully invested in relationship and he's like, oh my god, now I realize how terrifying it is.

Emma: 10:39

This is, whereas if I said that on the first date and I'd had a seizure, he'd probably been like, no, no way, because it is terrifying and it's not really nice. Well, you don't really have to dispose it. You don't have to do anything you don't want to. But I can't lie to people and it's such a massive part of my life now that I'm like it is what it is. If you like it, you like it or you have to like it, but it is a part of me and I've accepted that.

Jen: 11:25

Definitely it's a part of who you are. If people want to be part of your life, they need to accept all of who you are. Andy, do you have anything to chime in? I?

Andi: 11:33

do you know I like to throw the monkey wrenches in early. I have a question, because I know that our people that care for us, they freak out when something happens that they haven't normally seen or experienced. And we live it. Do you think perhaps maybe the boyfriend perhaps were freaking out because he was so used to you, seeing you fine as a description, I'm fine. But what that fine really looks like? You know what I'm saying fine to us, I'm fine. We use it all the time. But fine to us, in the big scheme of things, really isn't fine to the average person. It's just our everyday norm. So if they don't live a life with chronic illness and they're just the supporting cast, I think it freaks them out. Because what does fine really actually mean for real If we're like no, I'm fine, it's fine, it's fine. Whatever.

Andi: 12:23

The doctor's office was trash, disappointment was trash, but it's fine. I feel like garbage, but it's fine. Ouch, that hurts, but I'm fine. Oh no, I've had a full blown seizure. I took a nap though. Hey guys, why is everybody staring at me? It's really fine. And he's like well, wait a minute. You've been fine all these other times and it did not end up with you on the floor. This time, fine, looked different For me. It was my heart attack. Mine was hey, I'm fine, I'm fine, I'm fine. And then bam, whole cardiac arrest. That's it, dead, dead, dead 38 minutes. I told people that day I was fine. I had literally just told somebody I was fine, I wasn't. I was overwhelmed, my chest hurt, I hadn't slept, I was in the middle of a flare and then I was dead, dead, craziness.

Emma: 13:15

That's quite massive. Also, I love the way you just described it as, uh, like they're the co-supporting act kind of thing to us. I think that's a really brilliant way to look at it, because you are kind of the main person of your life. I think it's quite good to remember that. You don't have to cover that. Just make sure everyone else is fine, like they're the main part of the show, like you are in your own life.

Emma: 13:30

Ironically, when I talk about that time, I genuinely was fine. I think that's what scared me too, because normally if I'd have a flare-up of seizures, it would be because I was really, really stressed. I'd be having slept or I hadn't taken my medication. I'd done all those things. I'd also eaten, drunk enough water and gone to the gym. I genuinely felt fine and I think that was the shock.

Emma: 13:55

If I'd had a focal seizure is where I don't know if you know what focal seizure is, but for the purpose of this is when you are fully conscious but you still have the feeling of deja vu, as it were. You kind of. For me, I personally become mute and it can be known as an absence seizure, but it's dependent on what part of the brain. I'm a neurologist, so don't quote me on that. If I'm having a focal seizure, I'll just go, and if someone says anything to me I'll just say if you know me, that means I'm not good. So he'd seen me with those kind of seizures and they'd never built anything like that where he'd been present. Normally for me at that time time a focal seizure would then turn into a seizure. I'd collapse. So I was. It was more like the pre-panic before the actual show and I'd be like really so I think that's why I would get so panicky now, because it's been a few years later when I I don't have the. That's a whole other story. It's it's like so he, he'd know if I hadn't slept and I've been tired, I'd be like if I had a faux procedure. I'm going to bed, I'm not risking this, I'm having a nap. I don't want it to get to that point.

Emma: 15:01

But it's interesting, like where you said that you can say you're fine when you're really not fine, because it's a full-on masking thing. You pretend like everything's okay. You don't want to make either other people feel uncomfortable or to get in your own head about. Am I going to cause something if I think about it too much, or am I going to get too wound up and then that in itself is going to like cause some kind of stress. It's going to cause, like in my case, have a seizure. For your case, have a heart attack, which is like very extreme.

Emma: 15:31

And for people that don't have like a chronic illness or anything like that, they're like, how did it get to that point? Like you should just calm down or you should just whatever. And you're there going. Yeah, um, I don't know how to explain it unless you've been through it, because it's not like you're doing it on purpose. You're not there going.

Emma: 15:51

You know, I really fancy going to hospital today. I would really love a trip. It'd be great. You know what? I really just want someone to. Just I'll lie there and people bring me food while I feel absolutely rubbish. It's not that it's they're going. Just just make sure it goes away. Just don't panic about it. You're fine, you're fine, you're fine, you're fine. And it's like the constant reminder in your head. You'll see, people do say that mind overmatch or whatever, but in some cases it doesn't. It only works to a certain extent. It's, it's just, it is what it is. You can only learn to cope with that and the after effects and dealing with that in that sense. So that's very overwhelming at times. What I'd say I think I've struggled with the most is learning to cope with that and to allow myself to, instead of bullying myself for not living up to expectations of my previous self or of other people, which is a hard task to last.

Jen: 16:45

Really definitely, you explained it really well. Sometimes we think we're totally fine and we start out the day fine, but it might not end that way. We need to pay attention to that and regroup ourselves throughout the day to see where we're at and make sure we really are fine. But it might not end that way. We need to pay attention to that and regroup ourselves throughout the day to see where we're at and make sure we really are fine. But then again sometimes that that un-fine feeling comes out of nowhere. What's the backup plan for when that happens? We need a backup plan.

Emma: 17:06

I also think with that kind of things, I've grown to understand my condition. I've learned how I can cope with it, as in initially I'd be trying to push myself in the same sense of trying to do everything I used to do and having that expectation of myself, and now I know what I can and can't do. I've had the trial and error experience. I know what works and what doesn't work. I've also tried different medications and all that kind of stuff, but it's more of the uh, understanding yourself better. It's like relearning how you work and relearning how to adapt to what actually is good for you, and what used to be good for you might not be good for you anymore. Or you used to like do all the time, like even working how many days a week, or being awake for like certain amount of hours and not needing as much sleep or things like that. You have to learn. Okay, is this worth having in my head? Is this worth having a seizure for I'm going? No, it's not worth it. If I'm worried about it, it's in my head. I'm panicky, I won't do something. However, it's also, then, learning to cope with the not getting your head so much. You're going, you're actually fine. You just need to make sure that you feel secure or safe and not do as much up to the building up to that thing. Try not to worry about it as much, which is easier said than done. People say, no, just don't worry about it. But it has to be you that genuinely feels like you don't worry about it, because it's not that simple. It's just really getting to know yourself again, the whole new version of you.

Emma: 18:38

It definitely is different for people that have been diagnosed since birth, because that's their norm. It's not that that makes it any easier. I'm not disputing that. I'm saying that when I was diagnosed, when I was 23, I had a norm and then the norm had just gone. I had these expectations of being back to where I was. That really shook me. Used to be able to do like. You can't do that, but you used to be able to do that. And it's the, it's the missing and longing to that old, healthier version of me which was um, uh, you know it's been a tough pill to swallow. It's um, I think I'm, I'm getting there and I'm definitely a lot further down the line than I was. It's a positive, that is a positive.

Andi: 19:44

What would you say has been the most difficult and the most fun part of you dating yourself, to rediscover you. We kind of sit in the hey, this is my new, my normal has changed. But then it's like the exploration phase of what I can still do these things. What has been the most fun thing that you've discovered that you can still do? You just learned how to do differently. And then what has been the most challenging part of learning you to date you so that you can feel safe with you all the time?

Emma: 20:17

the way you've worded that, the whole aging yourself again. I've never thought of it in that kind of way and that's a really lovely way to kind of put it, because it is learning about yourself and you are dating yourself. It's a whole new feeling. The the thing that has been the most positive is that, um, I've started my own business and I wouldn't have done that unless I was really pushed to do it, to do it, and I was thinking that would be me. A lot later on in life, after I've had kids and after I've worked for someone else and done all that, I was thinking, yeah, that'll be the good time. I'll do that then, because I've always wanted to work for myself.

Emma: 20:57

But because life became a lot harder and it was a lot it's not very easy to find a full-time job that allows the people that have epilepsy no matter what they say, I always know the answer is because you can't fit into whatever they need from you at that particular job.

Emma: 21:15

I've been pushed to do the thing that I always wanted to do a lot sooner, and I'm quite grateful for that, in a way, because I've learned more about that now, so I actually have a lot more knowledge for the future in terms of that and also found out that that's something I really thrive in doing and also it's incredibly calm, so actually helps with coping.

Emma: 21:38

So I think that has really kind of come together in some kind of a fate way which I wouldn't have expected. Really, and if I had done it without having epilepsy, I don't think some of the stuff I create well, it wouldn't have been as informed or. But I thought it's more of a purpose now because I have a message to give and a story to tell, whereas if it was just like I wanted to become an illustrator, it's like here's some nice pictures. Let's be honest, that's still a hard job. It's quite hard to keep up with, you know, the market or whatever, and that stuff I do still enjoy, not disputing that. But it's the fact that I now feel that when I've done illustrations based around epilepsy or sharing and kind of helping to educate through the drawing or whatever, I get messages saying from on Instagram saying I've I experienced that I'm so glad you shared that so many people share the illustrations and helps me me feel not so alone, the fact that I've had others people feel not so alone.

Andi: 22:32

It's way more rewarding than just a nice picture do you think it's because now, when you do it and it's like awareness driven you are creating from a space of acceptance and it is being received in a space of acceptance and you feel safe. So I can do this all day. This does not feel like work. I am calm, you're reminding yourself you're safe because it's your journey, but it's helping to educate other people that may be along the way.

Andi: 22:58

I think it's beautiful that there is acceptance of us along the journey as we meet the people in our community. When we were scared to speak up at first, to go, hey, I have this thing or this may be going on, we were like I'm fine, it's fine, I have this thing. It's like our dirty little secret, but it's not really a secret, but don't look at me differently. And then we find our people in just you. Maybe you were just drawing a picture, because one day you just felt like it was heavy on you, like if I could put it into an image, this is what I feel. Like, if I could put it into an image, this is what I feel. And that image told a whole story to someone who also felt that way and it started the circle of acceptance in the community that is not often seen or accepted or valued. I am grateful for you and your talent and that you decided that one day this was going to be the thing that was going to help you heal and keep you calm.

Emma: 23:48

I love that you decided to pay it forward yeah, I don't think I realized it was a journey of acceptance, because the reason I started drawing about having epilepsy in my experience is because when I was in hospital I had surgery. It wasn't to my brain, I'm going to say this quickly. Hopefully my brain would sometimes stop my heart from beating because of the seizures. So I had to have a pacemaker put in um which was to basically just as a just in case, which I'm very privileged to be able to do that, because not a lot of people can get a pacemaker that quickly. Turnaround was very slow, very, very swift, but it was the being in hospital alone, isolated, for seven days before was only, and because it was during a COVID period, no one could come and visit and nothing was broken up for the day. I could call people, I tried to read, tried to distract myself, but the thing that actually made me feel most calm was weirdly drawing about what I was going through, because it felt like, even if I didn't share it, it felt like it was how do I put it? It felt like it was helping me, even if it didn't help anyone else. It was helping me cope and it took up time because I would always get really, really into what I was doing and really like hyper focus on it, so it would take out a lot of hours of the day. So I didn't feel reliant on someone calling me or trying to keep myself distracted and keep myself positive, because it wasn't not being funny. A hospital isn't really a nice place to be in and even if you're in a recovery ward, you become very aware that you're you're sick or you're not unwell or you're not right. And having that with me made me kind of cope better, and it wasn't just the drawing. I would then write about my experience within like the captions and say what happened, to kind of get my own head around what happened.

Emma: 25:44

Because I felt like I'm having a pacemaker fitted I'm so young and there was a debate between if I should have one, if I shouldn't, because it has to be done, redone every 10 years for the rest of your life. I was like that's a big commitment and that's why I'm so reluctant to have it. I feel like that was when I was okay. Well, if this is how this is gonna go, let's turn negative into a positive and try to share the story. If anyone else has to have a pacemaker and they're younger than me or they're in the same position. It's like. It's kind of like your feelings are valid. So I'm validating other people's feelings of accepting other people, even if I don't know that they're there, because that's what I'd have wanted.

Emma: 26:20

I've also always thought the people that have met me when I've always had epilepsy have treated me very differently to people that knew me before and after, because the people that have known me as just having epilepsy it's just kind of like, oh okay, like it's just it's not even looked upon when the people that you've known for ages, they kind of have this pre-conceived idea of what you were like. If you were then suddenly overly emotional or you can't do things that you used to do with them, it can be overwhelming having to continually explain your condition. Sometimes I just want to be like here's the picture. There you go, look at it, and I don't want to have to keep telling you over and over again. And that's not because I don't appreciate them. Sometimes it's just because I'm so exhausted from having to explain my existence and why it's different and why it's changed and why I am the way I am. As I've been through enough crap, I really don't need this one.

Emma: 27:19

It's another thing. I think sometimes, drawing it and being able to be like, yeah, this is how I feel or this is this is what I've been going through in my head with a picture and a couple of words that I've written, or the educational images of this, is what an aura looks like for a seizure. This is how a phone procedure works that you have like the words to explain what it is and how I feel. I don't have to constantly say it. I think it's a big weight off my shoulders. The constant explaining is is tiring. It's very draining. I think anyone that's had a situation like that will understand. When you're like, yes, I have this, yes, this happens, I'm going for this over again. It's like every time you go to a doctor's appointment and they go the intellectual history, you're like, oh really, yeah, do you know? But it's like, it's like you shouldn't you know this. I want to turn it with a book and be like read that then. Then we'll have a chat. I mean, I understand that exactly.

Jen: 28:10

It's almost like did you even look what other doctors have said about me? Maybe they are really that busy. I don't know what it's like to be in their shoes, but everything that you're saying right now actually has me thinking of a recording that I did with andy and a few others last week. Andy, I don't know if this is popping in your head, but we were talking about the importance of having an elevator pitch. One thing that I brought up to them is having a business card. I'm picturing a beautifully designed, because I'm looking at your website, which is gorgeous, by the way. You need a beautiful business card with a QR code to your website and an about you thing so you can hand that over and be like website, and an about you thing, too, so you can hand that over and be like this is what's going on, and that way, if you are exhausted or you're just tired of talking about it, you can say here you go. Now they have this beautiful piece of art, but they also have all the information about you as well.

Emma: 29:00

That's a really good idea actually the whole elevator pitch thing and doing that. But I think in my head I'm also a very emotional person, but the idea of going hi, nice to meet you there you go feels very like, not clinical, but a bit like, as I, they have stuff too it's not just all about me and like they also have. They might have stuff that they haven't shared and I'm a very open but say I think I'm I would overshare, let's be honest. Uh, I think sometimes that makes people feel comfortable and sometimes it makes them feel uncomfortable. If it's a person that feels aren't they don't feel comfortable sharing, I'll give them a card. But if it's someone that does feel comfortable sharing, maybe you can sometimes have a connection and learn something about something you didn't even know existed.

Emma: 29:49

When I think about it, uh, going back to when I thought I might have adhd and one of my friends I'd met via my boyfriend, she had adhd and we were talking about things. I was like, oh my god, you understand, it's like you get it, you actually as I, but I just, you know, I wouldn't have thought anyone and I just thought it was me being weird. And then, as soon as she kind of accepted the fact that she's like no, I do that, oh my god, no, that's not weird. So, yeah, but I do have adhd, though, and I was like, oh right, and then I was like it then got me looking into it, which made me more curious as to why not, why I acted it and I don't want to be like, oh, I self-diagnosed myself as adhd because that's really irritating.

Emma: 30:32

But I am also one of those people, only because, when I then, when I spoke to my neurologist about it, I said to him is there a chance I could have adhd?

Emma: 30:41

As, like I've been seeing him for like quite a few years, three years or something and he was like, yeah, probably like 90 of people that have epilepsy end up up having ADHD. And I was like you would have never told me that if I'd have never spoken to her and never had that connection with her. So, as much as that's a brilliant idea, especially like at events, to give an elevator pitch and like hand the card over I also think that it's important to communicate that, because then you can have some exchanges that are like absolutely brilliant. They've like formed amazing friendships. So then, be like, so like we get each other on a different level, because you understand me in a way that no one else could, because they haven't experienced it, and people don't understand really unless they haven't experienced the situation, which I think is brilliant, lovely, but also quite sad at the same time, I absolutely agree with you.

Jen: 31:28

I think there's a time and a place to have an elevator pitch or have a business card to give to someone. But then there's those times where, hey, let's sit down and have coffee and let's chat about this, because number one life is about connection. Right, we are not meant to live on an island by ourselves. Life is meant to be surrounded by other people and communicating and getting to know each other. And so there's some beauty in sharing our experiences and finding out how many similarities we have and how much we can support each other. And it's almost like meet someone that's like you and it's like, oh, can we be friends? We need to sit down, and and you can easily sit down and talk to someone for hours. But then there's times where people really do just want to get to know you and to learn more about what's going on with you. They want to better understand it so they can better support you.

Andi: 32:15

Well, I have a question. So you're a personal trainer and as a personal trainer that's also chronically ill I want to ask you what was the hardest thing for you as a trainer being on the other side of it now, but chronically ill so going from the gym goer I refer to myself as a gym rat because I was in there, I was picking up the heavy shit, I was putting it down, right, I was that's it gains, let's get them. And then life changed. And then I was like, oh my, I can't do that. I struggled a lot my first I want to say six or so months, because I was so used to being able to do it my old way. What is like one of the things that you learned how to do differently that you would say I'm so glad I learned how to do it differently because this is way better now.

Emma: 33:01

Really interesting question. Actually, I used to go to the gym four or five times a week as a normal. Then, obviously, when I was diagnosed, I still tried to do that. But four or five times a week as a as a normal, then obviously, when I was diagnosed, I still tried to do that, but then I'd be a lot more tired, quicker. I really wanted to become a personal trainer so I could be self-employed and I could pick as and when I worked. So that was so be flexible around me. Um but two.

Emma: 33:23

I loved it and it made me feel positive about myself. I was genuinely in my happy place, was going to the gym because I felt every time I leave, I'd never left feeling like I had a bad day or I had a bad workout, because at least I've done something active today. I also felt like all the personal trainers were all the same and they're all like either. There was no like personal trainer for someone like me, so that would understand if you cancelled last minute or if you couldn't do x, y and z, it wasn't because you were being flake and you didn't want to turn up. You couldn't be asked. It'd be like no, I'm genuinely not okay. I think the main reason I did it's because I wanted to understand myself better, because what you learn in, say what you learn in school, is really vague. When it comes to fitness, it'll just be like this is how you play football or whatever, and it's like, yeah, cool, great. That doesn't really help me understand it, unless you like some nutrition or anything like that. For me. I wasn't interested in it.

Emma: 34:18

Then as I got older I was, and I was like I really don't know anything about my body. I don't understand why things work, do a certain way, why things work a certain way. So I did work a certain way. So I did it purely for a selfish reason, because I wanted to understand why does this happen when this happens? Why does this happen when this happens? I found a lot of the training and the course to be very tailored to a certain person. I was like, well, that wouldn't work and that doesn't work and that's not quite true. I was like you have to do it to pass the training and whatever. It was insightful. I'm not saying it was completely useless, but I'm saying it was for someone that has a chronic illness and also someone who's a woman. You'd be like, okay, some of it was just a bit. The reason why I wanted to learn was because I thought I knew my body well.

Emma: 35:05

Then, as soon as I got diagnosed with epilepsy, I was like the whole, like you said, dating yourself again. I felt like, okay, I need some information here, I need someone to show me why these things happen and why they don't happen. I've actually found since taking medication it can fluctuate my weight really really drastically at points. So I used to be informed on how to help myself in any way that is possible and in an educated way. And just some random person on instagram or tiktok saying you should eat like 600 carrots or something stupid, like you need to know exactly what's right and what's wrong.

Emma: 35:40

But then education from that taught me okay, that's what is for the general statistic, as it were. And then thinking about telling it to myself. But then, ironically, um, I went to go apply for a job at the gym and they did the classic thing of you don't fit in what we need from you, which is, even if you're working freelance, it's the only to work x amount of hours and I was like I can't do that even as someone who's self-employed, they're like, yeah, we can't do that also taught me the whole.

Emma: 36:12

People are still quite brutal. Even if you're there doing a job, trying to help people, they it's. It's very selfish business thing. I'll say, okay, I guess I'll have to work on my own. Even since that point, I have avoided going to the gym and it's actually called me more problems, which is ironic because you think a place that's supposed to make people feel good wouldn't reject someone because of a health and fitness thing, and a place that used to be my massive happy place wasn't anymore. I don't like going there anymore, but I'm literally building up to go back just to go to the gym, not not even as a personal trainer, but it's still.

Emma: 36:46

It's a very like a journey that you have. You wouldn't expect it to be like that. I think that's a lot of the things I've learned with doing anything since being diagnosed, all just because I'm getting older. It's the. What you expect to happen isn't always what's going to happen, and you can have this foolproof plan of I'm going to be self-employed, I can look after my body and I can help other people in my condition. It's going to be great. You have this full idea life's like. No, that's not. That's not for you, you can do whatever else.

Emma: 37:14

I still like train and stuff. I mean not as much as I used to, even with I don't do it as much. I focus a lot more on the illustration, especially because it's the mental side of things has changed me because of that experience, kind of one, kind of filters into the other and helping that one grow and then hopefully, eventually it's going to be a, an even scale.

Andi: 37:36

I can't even remember what the question was now I don't know that the scale will ever be even, but there'll be more balance. I think we always, we go through life and every season of life we just exchange you know, the different voluntary or involuntary stressors, and that we tilt the scale all day long. The balance changes. But I think as we go through the journey, especially of the dating ourselves and getting to understand us more and what is the trigger and why does my body feel this way only around you that we learn to exit stage left and we learn to go. It's okay to say no and it's hey, I'm gonna love you from a distance because I have to love me a little bit more right now.

Andi: 38:19

I struggled with understanding what my identity was as a coach post heart attack, when I could no longer do the thing that gave me my identity right. So people would see me and be like, hey, coach, and I'm like, oh, blind, deaf, had a whole heart attack. I can't show you how to do that right now. I can't lift that. I can't lift anything over 10 pounds. I can talk you through it. But people started to look at me as if I couldn't do things and every diagnosis it it was like but I'm like however in the layers of days where they were bad, and I've had several of those days where they were bad, even as an entrepreneur.

Andi: 38:54

I look back at it now and I can see there were bad chunks, but so much good was happening while I was focusing on the man. Why isn't my life just? And then, seven years later, you have someone go. I don't think that you know this, but your life changed mine and just the little things that you choose to share. And so, yeah, we don't always see it when we're going through it, you don't always see it.

Andi: 39:22

The strength that comes from saying you don't always see it, the strength that comes from saying, hey, this is, this is me now, and it doesn't look like it always did, but I'm OK with me now, that acceptance portion is huge because the minute you go, I'm not who I once was, but I'm not who I'm going to be yet and I'm OK with where I am right now and I need you to be OK with it too. People look at you differently. You command a room differently. They accept you in a whole different way because it's no longer. Can I convince you to accept yourself? Can I convince you to accept that your normal may look a little bit different, but say that's lathered in so much pity and you're like you don't have to tell me that, because I already know that my normal is different.

Emma: 40:04

Yeah, stop waiting why did all of that as in the whole, you, the whole, sitting back and like you know when to leave and you know when to stay, you know when you need to love people at distance, and all that. It's very, yeah, very relevant for anyone that's been through like a major traumatic situation. And also, yeah, I understand what you mean when you feel like when I used to be going to the gym, I used to just I lift so much more but then it was like happy place and comfort place. I feel like that deteriorated slightly because of x, y and z. I mean like I didn't move, get out of bed for like three weeks or four weeks at all since I, when I had pacemaker fitted. And when then I went back and I was like I'm so weak, I can't do it, I was like how can I call myself a personal trainer if I can't even do it? And there's so much of that doubt within yourself. And when you said you need to have that confidence within yourself to then share it or you know, tell people or be confident that you know that you're in the place that you need to be and you're learning from I don't know you and current you, that is a really powerful thing to do because, like you said, once you have confidence and you know yourself and you can command a room, it's like yeah and I'm.

Emma: 41:17

I feel like this is it sounds horrible, but it's like it's happened for a reason, because this is all kind of come together and some things are bad and they happen and then just there's can't really put a nice spin on it. But sometimes I think the only what, the one of the ways I cope with it, is thinking what have I learned from this and what can I learn from this? And try to put that positive spin and try to be positive within myself and this is coming from a person that is ridiculously negative and have never been able to take a compliment ever. I find it difficult if anyone says like you look nice, I'm like. No, I don't like I'm, I'm like really awkward. But I feel like weirdly, having the epilepsy and having to redate myself as an adult which I think I was gonna say most people do, but I don't know that because I kind of put it down to the epilepsy that's when that pivotal moment happened.

Emma: 42:08

I feel like it's just all kind of weirdly come together at the right time. I'm not saying, you know, it's fucking great right now, because it's not, and let's be honest, there's always going to be a bit shitty bits and good bits. But I think I put so much pressure on myself for everything to be perfect all at once and for me to be okay straight away and for everything to go back to how it was straight away. And as the realization of no scrap that plan, let's make a new plan, which is to see how things go and accept you for you, instead of the trying to walk you back into the old version which, to be honest, was younger, more naive and had less empathy of understanding of this whole thing that you've been through. And it's amazing to kind of see that kind of transformation, especially like I worked in a care home for like six years as a receptionist and people like, oh gosh, I used to think people would judge me for that job a lot because I was like it was only supposed to be an intermittent job between university and then starting my career.

Emma: 43:09

But then my career never happened because I got epilepsy. Then I changed what the version of career meant because I then decided what I wanted to do, which is to start my own business, but equally, from that job I learned so much because the people that you meet, the stories that you hear and the understanding of what people have been through in life and they're, let's just say, the average person is 80 years old and I could relate to them in terms of a doctor's appointment or what medication they were on, things like that, and I'm like that's weird. But then also the reason I'm so good at this job is because I have that understanding and that wouldn't have happened if I didn't have epilepsy.

Andi: 43:47

I wouldn't have been in the hospital and seen one of the residents walking through being like, well, yeah, so he pacemaker, just yeah, me too weird, like that wouldn't have been so true, I have so many conversations like once, these scars, but I think that I am a better trainer and a better coach, because now I'm like you're not functionally moving your body and how do I know you're not functioning in your body. I live in chronic pain. I don't want you to live there and I think that we make literal. We make better. I'm going to say it. We make better trainers because our bodies attack itself all day, and so we're like there might be a more efficient way to do that where you can work the same muscle group without the injury that may come from you doing it incorrectly because you want to pick up heavy shit and put it down right. So I learned so much, and so now the young athletes that I work with, I see you, I know you want to go hard, you want to do all of this, you want to get all these gains. I get it. What I need you to do is pace you so that you can actually reap all the benefits of doing this Right. It forced me to slow down enough for me to understand and enjoy my process, but also be able to relate that to the generation that is watching me Like I can't rush the journey if I'm telling you not to rush the journey and while you're going to be frustrated, I got to sit with them and explain to them. I understand your frustration because I live your frustration and while you were trying to get stronger, coach is trying to get stronger with you. So I understand your frustration because I live it, but I live it for a different reason and here's why. So it got to open up all of these conversations. I live it for a different reason. Here is why. Now you may know that I have these health things. This is what it did to my body. This is what it did to my muscles. But before these diagnosis, I was an athlete that was going hard in the paint that wouldn't sit down. Then my body sat me down and now I'm recovering from being the athlete in my youth and trying to re-actually learn how to live in my body now and I'm trying to prevent you from having the things that you don't need to have because you won't sit down and pace. Now I did it. I was so angry at all of the diagnosis and now I look at it and go wait a minute, I needed to sit down. I needed to sit down so that I could teach our TikTok generation.

Andi: 46:06

There are people around you that don't look like you, that are carrying stuff that you may never know, and while we are bullying each other, we are being keyboard warriors and we're doing all of these things. I don't look sick. I'm your coach. I don't look sick. Here's what I got going on guys that it's like whoa, but you would have never seen that coming. So be kind, because you don't. It's free. It's free and you don't know what the person next to you is carrying.

Andi: 46:32

We all carry something heavy at any given day, but it wasn't until recently where my body and my mind accepted you are this part of your journey because this was meant for you. This was for you to change the narrative of what sick looks like, and continue to change the narrative, because I don't look sick and Emma, you don't look sick and Jen doesn't look sick and we're out here. So maybe maybe we're the normal. You see what I'm saying. Why do we go? But I'm sick, maybe we're the normal and everyone else is the weirdos, but we assume that we're the weirdos. What if everyone else was the weirdos? What if the Spoonies were the normal ones and everyone else is the weirdos?

Jen: 47:13

That is a really good way of putting it because, honestly, we are all carrying something, we are all carrying a load, but not everyone is brave enough to share it. I'm looking at the time, guys. We could go for hours. Emma, I think we're going to have to schedule a part two. If you're up for it, we're going to do it Before we close out. Congratulations on co-authoring Beyond the Ordinary. Can you tell us a little bit about it before we close?

Emma: 47:39

Yes, I can. Yeah, beyond the Ordinary is 30 different women. They've all written a chapter within the book and each one is talking about their experience of neurodiversity and how they even got there if they'd always had it, but it could be from their journey from abuse addiction. In my case, it was being diagnosed with epilepsy. There's a whole range of people from different ages. It's all talking about their unique experience as to how creativity helped them cope with something that was traumatic or life-changing. And a lot of the people in the book actually sell at the shop that I sell my stuff in in england. I mean, and they they've all had completely different life experiences, but they all make something because it brings them joy and helps them deal with something like adhd, which should be the normal, to be honest. Um, it helps them cope. So it's everyone's little snippet of like you said andy about.

Emma: 48:35

You wouldn't expect that person would have gone through that. There's a person I worked with for like I don't know two years and she was one that said I don't know part of the book. I was like, yeah, sure, I'd love to do that. Like she read my chapter and she was like I had no idea you had been through all of that. I was like, yeah, no you, why would you? I read her chapter and I was like bloody hell, like there's just so much that people don't know because they don't.

Emma: 49:00

It's not really always a place to share it, but the book is a lovely place to start to help understand people's stories, to learn how to empathize with other people and to show that creativity is a brilliant way to also bring people together, but also show that it's a brilliant way to cope with things that can be difficult. That's what I love about it as being part of it. Also, it was a joy to write for me because it was therapeutic in itself to write it, so you realize how much you've been through and how resilient I've been, because as soon as you write it all down, you're like I've been through all that. Yeah, I actually am. What these, all these my friends say I am. Oh, you're doing well, you are resilient, you are, you've like, dealt with a lot, but until you write it all down, you're there going.

Emma: 49:45

No, no, it's just another day. It's just another day, but it is. It's a lot to deal with and there's people that haven't been through things like a lot of people in the book have been through. It's the fact that those people still get up every day and do something and you're there like yeah, I'm actually pretty good, I'm pretty proud of myself because not everyone can do that. You know, it's a kind of a celebration and of the fact that people have been through a lot of stuff and are still managing to move forward in a way that makes them happy. Really, that's a really way to put it, but that's how I, that's how I feel about it. I can show you enough.

Jen: 50:20

This is what it looks like beautiful, you are not cringy whatsoever, sorry, I love the colors.

Andi: 50:27

I love everything about that.

Jen: 50:28

I love everything about that. It's gorgeous. We are going to share in the show notes how people can get a copy. Get in touch with you, see all the things, do all the things. But I'm telling you right now book it. We're going to do a second episode because we need it. Thank you for your time and Andy for joining. I cannot wait to chat with you both again and everyone out there. Until next time, don't forget your spoon.