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S2 E5 Jewel Gibson: Catamenial seizures and running with epilepsy (AUTO TRANSCRIPT)

NB. Accurate transcripts take time/money beyond my current funds. I am slowing working through, but in the meantime this transcript has been automatically transcribed. Unfortunately there are errors in it, making it difficult to read in places.

If you would like an accurate transcript, please email and I will provide one asap (no cost to you).

JEWEL: I literally since last year started I guess living an adventure. Like I just started like being in a space where I want to do things that I've always wanted to do. Cause I think, you know, when you become a mom or a wife and your life mergers with other people's lives, then you lose sight of some of the things that you wanted to do. So I think it's pretty cool. To, be in a space now where I can do those things and I'm doing those games even despite the seizures.

FRAN (in studio): Hello adventurers, it's Fran Turauskis here and you are listening to Seize Your Adventure.

You just heard a taster of my interview today with blogger and runner, Jewel Gibson. Jewel describes herself as a mum, a wife, a teacher, and a blogger from Brooklyn, New York. Her Instagram and blog, Life's A Jewel, focuses on motherhood and encouraging women to live healthier lives, She also uses her platform to talk about the day-to-day challenges navigating a seizure disorder.

This episode is in fact part one of two. Jewel is very multifaceted, and during our chat I asked her about her experience with pregnancy and being a mother with epilepsy. But because that is a little bit off the usual path for this podcast, I’m going to save that part of the conversation for its own episode next week.

Today’s episode is going to focus on Jewel’s diagnosis journey, how epilepsy affects her day to day, and the relationship between her epilepsy and running.

Jewel was an athlete and runner in highschool, so when she saw an advert from The Epilepsy Foundation of Metropolitan New York about running the United Airlines Half Marathon, she figured it would be fun to try. She wanted to run to help eliminate the stigma about epilepsy and seizures, as well as raise awareness within the community.

But when Jewel started training, she realised that her seizures and epilepsy were going to make running more difficult than she remembered! Jewel couldn't find any information on running with epilepsy, and how this might affect the way you train. She had to figure it out on her own and learn how to run without aggravating the condition. Her blog post about her training was one of the few articles I could find on the extra concerns of running with epilepsy.

Pseudoseizures - Now more commonly known as psychogenic seizures, which are not caused by electrical activity in the brain. Also called Non-epileptic seizures (NES), dissociative seizures, non-epileptic attacks. The name 'pseudoseizure' is an older term. In the UK it is not used because it suggests the person is not having 'real' seizures.

FRAN (to JEWEL): So let's start off by going back to your diagnosis, how did you find out that you had epilepsy? How did it start for you?

JEWEL: So, I found out roughly 12 years ago I was sick and I was laying on the couch with a friend and I thought I was shivering because I was cold. you know, my friend was like, no, I think something else is wrong. then next thing I knew I was an ambulance being on tickets to the hospital. um, the experience that first night was rough because the nurse in the hospital thought I was on something or thought I had taken something. And, She made my mom leave the room because she got out of mine because my mom and she just kept saying it to me: “Tell me what you took. Tell me what you took. It's okay to tell me what you took”. And I'm just like, I didn't take anything. I don't know if she was well versed in what a seizure looked like. a seizure could happen, from other things. Cause I also had a fever and two years prior I was also in a car accident.

And at that time I hadn't really had that's my first time I had ever had a seizure. So it was really weird to have that experience where someone, if you're trying to figure out what's wrong with you, why someone is trying to convince you that you took something that you weren't probably weren't supposed to take, which caused the situation that happened to you.

So there was a lot of emotion. in that space at the hospital, and just new challenges, get a hold of like what was actually happening to me and trying to convince the nurse to help me and get me to a place where I can be okay. As opposed to trying to convince me that I had adjusted something that I needed to tell her. So after going through 20 minutes of trying to convince her that I hadn't taken anything, they finally, um, gave me, I believe it was lorazepam to kind of calm the seizure down. I seen him in the hospital all that week. Cause I constantly kept having the seizures and they like, they wouldn't stop.

And the doctors were trying different types of, um, medications just to get the seizures to stop. And so between the various cocktails of medications that I was on eventually after a week, the seizures stop and I was able to go home. and then after going to see different neurologists and doctors, it wasn't until years later that I, got a diagnosis.

So, it took a little while to get to the point where I could figure out what was going on with me. I was very independent prior to having my seizures. I also had a child and my son was almost two at the start of my seizures. So. My family was very, very supportive. Um, and, helping me transition from, being independent to being dependent because I needed them a lot more than I did prior to that.

I know my dad and my mom both came with me to all her appointments and, they helped me take care of my son and my brother would take me also to my appointments and leave with me, to go with me, to walk around with me. Cause I also couldn't go outside by myself. I couldn't drive I and go to school anymore.

So it was a really difficult time for me as a young adult to be stripped from my. Independence. And now having to solely be dependent on others to make sure that I was okay, but my family was really strong and they were strong for me. And they were very helpful in helping me be okay with leaning on them and depending on them.

So that part was easy, right? That part was easy because they were so supportive, making sure that I was okay and making sure that I had what I needed and that my son had what he needed. and it was, it was a rough few years, like the first three, four years, after having my first seizure was really rough.

and it wasn't until that fourth year that I felt like I kind of was able to get a handle on. Controlling them and being able to like, get my license to drive and then also being able to, um, go back to school and go back to work. so yeah, those first few years are really, really rough.

FRAN: Yeah, thank you for sharing that. And I think it's really interesting to hear you talk about the way that you were met when you went into the hospital initially? cause I actually had a very similar thing from the paramedics when I was in the hospital. I was at university when I had my first one and I was with my house mates. I think it was in the evening. And they, they were asking the same question. They were asking me, have you taken anything? Have you been drinking and all this kind of stuff? And for me it felt very accusatory at the time. Yeah. was quite lucky that they, took me at my word quite quickly, but it sounds like you had a bit more, difficulty in essentially convincing the people that should have been helping and listening to you, to look for the, the actual reason behind it.

Can you just explain very quickly the type of seizures you have and the type of seizure you had that first time?

JEWEL: so the first time they really couldn't tell me what type of seizure I had. It was only after doing, a few tests that they were able to, tell me what they were. they, um, so at first they told me that I had pseudo seizures.

FRAN: Hmm.

JEWEL: And I was just like, okay, I don't really know. what would that is? And I don't really understand like what you mean. And, they were explaining to me that typically a pseudo seizure epileptic seizure, which results from psychological conditions rather than like brain function. So like you can have a pseudo seizure because of stress. Or PTSD or something like that. But what I later found out was that most people who have pseudo seizures have a second type of seizure as well. So, the seizures were masking themselves as pseudo seizures. So there wasn't any on activity showing one, the EEG.

And then later on, , maybe I want to say roughly two or three years later, , I was getting married and I wanted to start a family or my husband. So we did a sleep study at the hospital, the doctor was like, you know, your seizures are a lot deeper in your brain.

It would be very evasive for me to like go deeper, to figure out like, what is like really happening, unless you have like a bigger seizure. I really couldn't tell you. Well, unless like, as time goes on, other types of seizures starts to reveal itself. Cause I can see the activity.

I just can't tell you, like what's actually happening. So then they realized that I was also having seizures in my sleep. So he's like, yeah, that's definitely not a pseudo seizure because it's something that you're having you're asleep. And he was just like we kind of need to do more testing and following up, so we did more testing and following up. I got to the point where, I saw another doctor and then I was just giving her, My like history. And then like what I feel like when I have seizures or like what happens when I have seizures and ultimately it came down to that. I have catamenial seizures. So um, these are seizures that frequently, um, happened during, minstrels cycles. Like, during. After or before your cycle? even sometimes if you ovulate. So, they were like hormonal base and they're gender specific. So they only happen in women. so now, um, with that information, things started to change a little bit because it almost was like, I felt like, okay, am I like the doc-- Like some doctors are making me feel like I was making this up and I didn't really have anything else to go off of. And when I spoke to other people, they kept telling me like, yeah, it took me five years to get diagnosed with the official like type of seizure or some people it's automatic.

And then other people, it takes them a few years before one lady told me it took her 10 years. So. Yeah. Found out that I had catamenial seizures. And since then, it's been a bit of a roller coaster because, you know, being a woman your horomones change every month, something that is difficult to work around with something that you can't. Figure out when you own is not like something like stress that you can manage and fix, or it's not like, um, knowing like certain triggers that you have, that you can kind of manage them fixed.

it's going to happen every month. And you kinda just have to brace yourself and be prepared that you may or may not have a seizure because your hormones are shifting.

FRAN: Mm. Yeah, I think you, you kind of hit the nail on the head there with the, you've got, you've got a trigger for it, which is quite nice in a way that you know why it happens, but because it's a trigger you can't control. That's almost worse as it were, but you, you do go into a fair amount of detail on your, your blog that you have, Life's a Jewel. Why did you decide to actually make it a blog? Why did you decide that that was something that you wanted to put out there for the world?

JEWEL: I felt that it was important to do that because after having my first seizure, I didn't really know where to go there. I don't really know where to turn there. Weren't really many people, one that looked like me and two that was actually sharing. Cause I think, There's so many stigmas attached to epilepsy and attached to the community that people don't want to talk about it and people don't want to share. And, it's not as sexy as breast cancer, well cancer, where people were sharing that they have cancer. And what I mean by sexy, it means like it's not that kind of illness well, that's making money. So that we can fund research into all the things and we have all these great spokespeople is not a sexy advertisable illness, where people are out here like advocating and talking about or whatever.

It really took a little while for there to be people that were stepping up to advocate that we're stepping up to talk about it that we're breaking their silence to talk about it. so I felt like when I was looking for a voice, there weren't many. I felt like I, it to be what I didn't see for myself for other people.

FRAN: mmm. did you ever feel the need to keep quiet yourself? Did you ever feel like you had to hide your epilepsy?

JEWEL: Of course, especially at work. I think the workplace is where most people have had their chronic illnesses because you feel like it could be used against you. Um, by profession. I'm a teacher, I'm a high school English teacher and, sometimes. You know, it is difficult to get up because I'm tired and my body hurts. And yet I have to stand in front of these 30 beautiful children everyday and teach them and be present and, and focus and do all the things and show them love. And when some days I don't have the energy to even get myself out of bed. when you are at work, you know, you have to be on, you have to, especially in what I do.

You have to be on, you have to. be visible. You have to be, friendly and parent and you have to be there. And with the side effects of some of the medications we have available to us, that's hard because a lot of the medication make you drowsy. They give you anxiety, they make you tired.

They make you feel like a zombie. And so it's difficult to balance being present and being all the things and doing your job effectively. And taking care of your epilepsy and taking care of your health. and so that was like, that is the place where I have for the most part. Yeah. Chosen to hide that part of me in mostly people who I work with don't really know that I have a blog.

They don't really follow me on Instagram. So they don't really know that part of my life. They just know that I'm a teacher and that's it. And so hasn't been easier. Until recently to kind of hide that part of who I am. And I am privileged to be an, a, the space now or in a school now where, I can be open with my master games and, the people that I work with about what I'm, what I'm dealing with on a daily basis.

And my students are very supportive. And they're very open. it's funny. I'm actually was off this week and I had a follow up neuro neuro appointment because I had two seizures last week. and, I'm going to have to wear the, 72 hour, EEG at work.

FRAN: Yeah.

JEWEL: And so that's going to be interesting. It's going to be, it's going to be interesting. This will be the first time that I've ever been anywhere socially with the device one. the other times that I've done it I've stayed home, so I didn't work. So I was home and I didn't really go to school. So I was able to like, hide that part of me.

And so now. I have to wear it for 72 hours. And the procedure, I'm going to do it like in March, the middle of March. all weekend to my husband about like, how am I going to talk to the boys about this? I'm like, what am I going to say? Like how, because I work in an all boys school. So I'm just like, how am I going to talk to, you know, administration about my scholars about it? And it's, it's been. And emotional journey because now this is going to be a part of me where I'm going to have to be vulnerable. And it's going to be a lot of vulnerable moments with myself and my scholars.

I'm sure they're going to ask me a ton of questions. and they're going to be very intrigued by the device and like what it does and the whole thing. So I'm, I'm ready for that. , I'm just trying to figure out how it's going to feel for me to be out and about and around people that respect me professionally.

And for them to see this private part of who I am that I haven't really shared with them, you know, actually ended with the world, but not with this part of who I am.

FRAN: Absolutely. I think, like you say there's going to be a lot of questions. It's going to be a good talking point at the very least where you can kind of have an end to that conversation. And if all else fails, you can get yourself a really nice hat and just wear that.

JEWEL: Exactly

FRAN: But it's true. The, um, like you say, you, you have a blog while you're telling the world about it, but it is very different having those in depth conversations with the people that you see day to day, because there's the different, different sides of you that you're showing. I hope that it will go well for you. I look forward to hearing more about it when,

JEWEL: Yeah. I'm actually thinking about writing a blog post about it, so

FRAN: yeah, I think it would really, really be interesting for people. And, of course, hopefully it will bring you some more information about the seizures so that that side of it can be fixed up a little bit as well with luck. So, let's talk about the content of your blog let's but because one of the reasons that I wanted to speak to you was one of your blog posts in particular, and you did this as part of the epilepsy blog relay for living well with epilepsy. And it was five points that you learned about running with epilepsy. So that's obviously something that I, I'm very interested in myself. I took up running within the last couple of years since I was diagnosed with epilepsy. And it's something which I've been kind of figuring out myself, over the past couple of years. So to see your five points out there was really helpful for me.

I think because it kind of. I recognize myself in what you were writing. can you just go back to the start in terms of, what were you training for when you started running with epilepsy?

JEWEL: I started training for the half marathon, the United airlines, half member barn, as a part of the epilepsy foundation of metropolitan new York's team. I got an email that said, Hey, we have, more spaces on our team. you should join it. It was like a generic, email that went out and I saw it and I was just like, why should I do this? Like, this sounds really cool. I'm very athletic. I ran track in high school. So in my mind it was just like, it's going to be like riding a bike. Like if you rode a bike, when you were a kid and then you didn't ride a bike for years, then you finally get back on his bike, your mind, and your body is going to automatically know what to do. So I thought, okay, naturally, you know, I'm, I'm a writer. I've been an athlete most of my life. And I ran track in high school. This should just be a piece of cake. Little bit. I realized that there were a lot of things that I did. didn't put into contracts when I was thinking about it because when I was running track in high school, I wasn't, , I didn't have seizures. And so these are part of my body. Well, part of my history, that isn't what it is now. And so my body was able to do things that I feel like sometimes. I'm not able to do some times now and I wasn't as tired then I was younger. And I was able to get the proper amount of sleep that I'm able to get for most people. Well, epilepsy, you really should be getting the same amount of sleep as a toddler from, from what I understand and, what adult, you know, is sleeping 13 hours. So 15 hours a day. None. Like none. So it was like factoring in the fact of knowing what my body can handle. And , being able to, um, no, my limits and staying hydrated, make making sure that I slept well, so that I can be focused and, I can be prepared for what I was going to endure.

When you run, um, your body changes a lot. And I think like after I started running, I felt a lot better. physically than I thought I wouldn't. Cause most people think, Oh, you're, you're, you're exhausting a lot of energy when you run. But I feel like when you run, you get more energy after running, like I feel, I feel better. I feel a lot more alive. And so running from me became something that I did. It became something that I was doing for the epilepsy foundation, because it was my opportunity to give back to a foundation that I felt like had been given to people like me and to raise money for research, that I knew was very much needed for our community.

So that was my ultimate, really, if we're doing it and my ultimate reason for wanting to finish, but I think along the way, I started to love running again and running became an outlet for me. And it became a way for me to find peace within myself and find peace within my body. because I physically, like I said earlier, like physically, sometimes I don't want to get up.

And that was like pushing me to, I get up. I feel like, okay, time, those months that I was training was like, you can't give up, you made this promise to yourself that you were going to do this, and you're doing this To raise money for research for other people who are like you. And so what if you don't run then that thousand dollars or that $1,500 you could have raised could help somebody. So I think that also was pulling on my heartstrings and making me more conscious of other people who don't have the opportunities that I have, because there are people who have epilepsy, who aren't as. Independent as we are. And who struggled with their day to day and who have people who care for them. And so what about the people who care for them and people who stay home to care for people are part of our community. And so it just became so much bigger than me. and it became more about what I can give back to our community, that training for it. And. fighting a better understanding about what my body needed during this time. So I can actually execute. This was like so important to me, it became so important to me. And it was so dope to have my husband and my mom and my siblings support me because I ran by myself. Like even though you run with a team, once you start running. You know I didn't really know anyone else on the team. So once I started running, I was there by myself. I didn't really have anybody running alongside of me. All those things, all those thoughts were keeping me going, what was pushing me during the entire half marathon. I'm so happy that I did it. Uh, I did it two years in a row. Did it very year before last and last year. But last year I actually had a team. My brother, one of my brothers ran with me. two of my really good friends run with me as well.

FRAN: Yeah, it sounds fantastic. And you can just hear how, um, relaxed you feel when you're kind of by running and that kind of thing. Uh, completely hear you have the idea of it. Running for something that's beyond yourself as well, that you say that concept of other people that just don't have the physical abilities sometimes because of their epilepsy and sometimes because of a condition that goes alongside it. Um, so being able to use those times between your seizures, I think is, very impressive for sure. do you still keep up the running when you're not training for something.

JEWEL: Yeah. so one of my really good friends, she's also a runner. And so she and I, um, we go running I try to run at least once a week. the last time I ran though, honestly, was last summer. because I was in an accident in August at the end of August. So I haven't been able to run because my arm was, in a sling, and then it was in an arm race. So I just got the arm break off in, December and I'm slowly like getting, physical therapy for my arm. so once I feel like my arm can withstand, because even though. A lot of people are like, Oh, it's just your arm. And like, you need your legs to run. Right. But when you're running, your arms are also moving with your legs and your it's like a whole body experience, like running is not just about your legs, its about your entire body.

It's about your breathing. It's about outside of your leg. Because, the accident also impaired my breathing because my chest muscle, it was cold. I needed to make sure that I was in a position where I wasn't going to strain my body because I wanted to do something that I love. So I've taken the time to heal recuperate.

So I plan on starting to run again. I want to say in April, when it gets a little bit warmer, Um, my body's not used to running in the cold, I mean, anymore. Like I had to like running in the coal and that's another thing, the marathon in March, and then March every year. And it is the first year that I ran, it was 22 degrees and the windshield, it was like negative, like 10.

It was, it was so cold. And his last year this last year. It was about 35.

FRAN: I'm trying to do the, you know, I'm trying to do the conversion because we work in Celsius over here, but it's, it's, that's my that's big minus numbers. That's like cold, New York Weather right there.

JEWEL: it was cooold. Okay. It was so cold. So during I started training the end of November and the run was in March, so I ran through the whole winter every morning, five o'clock, four hour. And then sometimes at night when I came home, because it's kind of like, if you don't, if you don't train in the weather that you're going to run in, your body's not going to be used to being in the cold. So I had to get used to being in that kind of weather and training in that kind of weather when it, when I have to run.

FRAN: Yeah. I mean, that's a bit cruel of them to put it in March, but at the same time, it's a, at least it keeps you going through the winter. It gives you an

JEWEL: Yes. Yes. And I have to say that running in the summertime is not as great as it needs sound because it's hot. And so your body is hot and you're sweating and

FRAN: I certainly I'm really bad in the summer. I was really worried because my race, last year I did a long race in July and I was really worried that it would be that proper peak. Summer weather and got really lucky with that because the first half of the race was all nice and foggy and Misty, and then it just got a little bit hot in the afternoon and then I could chill in the evening.

JEWEL: right. Cause it was probably early in the morning.

FRAN: yeah, yeah. That's uh, I've heard from other people that when they race in hot weather, when they run in hot weather, it's much worse as a trigger for their seizures. So even though the cold is difficult on your body and difficult on your breathing and that kind of thing gets potentially was a better race and a better time for you to deal it.

JEWEL: definitely.

FRAN: Yeah. you mentioned very briefly that you feel. you run your head feels a bit clearer and that kind of thing. Did you have any seizures while you were training?

JEWEL: No, I didn't actually, I didn't, have any, and I usually record, but since I've since I've had my first seizure, I actually write down every time I have a seizure so I can keep a record. like, write down when I have a seizure and like, how many times. so that I like I can kind of like keep track over the time, over the years. it's proven helpful. Cause I can you one, you get to see how your growth, right. And when like celebrating one day seizure-free is like, I'm also for. Some people. and there are people that I know that have been seizure free for years, at any time, seizure for you is amazing. Like during that time that I was training, I feel like my body was able to release the stress. That probably was pen was pens up. Cause I think when you don't exercise, you're not moving the muscles that you need to move and, um, your body's not getting what it needs. And so I think, I feel like during that time, when I was training, I was in a different space mentally.

I don't think many things were stressing me out. I think I was able to think and focus. Differently. I just think that exercise allows your body to move in a different way, because they're your, body's releasing all these different chemicals that are released when you exercise. And, it, I feel like you're in a better place mentally and emotionally when you exercise. I think a combination of all those things, probably heightened my seizure threshold and May need, Less worried about like my health and just more worried about living with the seizures with epilepsy, you can, you can become a little anxious because it was just like, You're always wondering if you're going to have a seizure or when you're gonna have a seizure. And where are you when that time happened? If you're going to be okay. Like all of those questions sometimes arise if I'm in an unfamiliar place. like if I felt like I was going to have a seizure all weekend, well now for the rest of the week, I'm worried and I'm, extra cautious on it. Just, I feel like it removes a lot of the worry that I was having.

FRAN: Yeah. And the anxiety is something which I think can be very overlooked by people that, if you're not seeing the seizures, people don't necessarily recognize that the anxiety comes in part of that. Even if you're not having the seizures. still, occasionally I've been very lucky. I'm coming up to my five year anniversary,


FRAN: I know, I can't believe it's five years. And so I realized the other day. And I was like, Oh, that five year milestone. There's all kinds of things that open up for you. I can go

JEWEL: Yeah.

FRAN: scuba diving now if I want to. And that kind of thing.

JEWEL: People don't understand that those little things matter.

FRAN: Yeah. Yeah. but it is interesting. The stuff that is new, like scuba diving, I would probably still get anxious because it's something that is a different strain on your body. the anxiety levels kind of ramp up a little bit, even, even if you're body physically, isn't having always there at the back of your mind, isn't there?

JEWEL: Yeah. It doesn't it doesn't unfortunately, because it doesn't, it doesn't, it's just like, you know, being so excited about having something and then feeling like it's going to go away. You know, it's like, it's, definitely brings a level of anxiety that, only people with chronic illnesses can understand. I feel like, they may not be able to understand it in other ways. But it is definitely like this constant worry of feeling like you're not going to be okay at some point in a day or that something's gonna happen where you may have a seizure or it's just a constant worry then I think, you know, we, we have to focus on, or maybe we shouldn't focus on them and I don't know, to kind of make sure that we're okay.

I think it's always the Costco to making sure that we're okay.

FRAN: Yeah, for sure.

I always ask everyone, the podcast is called seizure adventure and the idea that adventure is different for everybody. So what is adventure to you? How would you describe adventure?

JEWEL: Wow. That's a good question. Um, I think adventure for me is I'm doing something different and, being able two, explore and, and things that are unusual and exciting. Yeah. So

that's what, that's how I would venture.

FRAN: yeah, I think it's a good. Yeah, And somebody is hoping to be a bit more adventurous, if they're hoping to start running, or if they're hoping to start doing things that are new to them and they have epilepsy?

JEWEL: Sure. I think with anything you have to take one day at a time set a small goal and, Once you beat the small goal, set another goal. for me, I knew that I needed to run 13.5 miles after not having run for years. So when I started training, I didn't tell myself, okay, I need to run this whole 13.5 miles right now. It was okay. This is my goal. as I need to be here by March 1st. So what am I going to do right now that I know that I can actually do something that's measurable? And I was like, okay, I'm going to run them out. I want to run them out. 15 minutes. And then 15 minutes turn to 12 minutes and 12 minutes terms of 10 and 10 turned to eight. And then, you know, , it just went from there. And so I think with anything that we choose to do, as far as the venture is concerned, and it really depends on what it is that they want to do. Some things you may have to just jump right out of the window and just do it, that book. Just do it, you know, like somethings, if you want to write a book, if you want to read a book, that project that you're working on this business venture or business idea, those things are the kind of things that you could just jump out there and just try to get started and find all the information you needed to find and maybe make some contacts and network with people. get some funding, do all the things you can to like get this idea. Off of the ground. And then there are other things bike running and exercise that may take a little longer, or that may take a different approach. But I think every adventure, that we set out to do can be done. we just taking baby steps and just deciding warm what you want to do. And just trying to figure out what steps you need to take for yourself that feel comfortable

FRAN: Yeah, I say similar things to people quite a lot, but I think it never, it can never be said enough because I needed to hear that today.


FRAN: It's it's something which it's easy to say sometimes. Yeah. Not always as easy to do. the, the more you say it, and if you start saying it to other people, you have to have to live what you say, uh, if somebody is newly diagnosed with epilepsy,

JEWEL: the one thing I would take away is to just research, research, research. I don't think you can know enough about something that is affecting your life. I think it's great to have as much knowledge. About the condition as possible, to have as much knowledge about the resources that are available to you, and to your family, and just figuring out, you know, your triggers and figuring out, you know, a way to be okay with there's no life, cause it's an, a life.

And I think I like the, for me, it's like, Yeah. You know, a lot of people are like, I'm glad me, why me that happened to me. And it's kind of just like, well, why not? You, you know, like life, isn't over research as much as you can. So that way you can continue to live your life as close as possible to how you would have wanted to live in. if you didn't have, epilepsy. And I think some people, are diagnosed with various chronic illnesses and start to feel like their life is over because they can't do certain, activities or jobs or, you know, whatever it is. after being diagnosed, I think that anything is possible. I think that some things are temporary and I feel like there are always ways around things. And so just to figure out

FRAN: Speaking to Jewel, it was just so interesting to hear about her changing relationship to epilepsy, and how it perhaps changed her relationship with family as well. I think in the interview you get a taste of some of the different coping and self care techniques she employs, and go ahead and follow her on Instagram, for some more inspiration and advice. At the moment, she is doing a lot about bringing nature inside and her love of house plants, it’s really fun, her feed is beautiful. You can obviously also learn a bit more about her on her blog, and you can also hear more from her on the Well Fit Mama podcast, with her friend Autumn. The links to all of those are in the shownotes for you.

I’m going to take just 3 or 4 minutes here for a bit of news. Seize Your Adventure has a new team member, and it’s another Francesca - Francesca York. Luckily she goes by the name Frankie, so it shouldn’t get too confusing. But Frankie is a long-time supporter of Seize Your Adventure, right back when it was still just a blog. Some of the contributions and stories on the website really helped Frankie when she was going through a tough time with her own epilepsy. I’m very glad to say she has been seizure-free since last October, and she will be helping out behind the microphone over the next few months as my volunteer Intern, and you will hear more of her story in the future.

Frankie is volunteering her time, and it means the world to me. As you know this podcast is a labour of love supported by contributors and listeners. You can also support financially by becoming a Patron. Head to, support starts at just $3 a month which is about $1.50 per episode. If we hit $250 a month, it covers the basic costs and work for one episode and I can pay Frankie a bit for her time...

The snippet of music in today’s episode came from Kev Rowe on soundcloud under a creative commons license.

And I’m going to pass back to Jewel to close the episode, with a little bit of a reminder to pause every now and then, remind yourself that you are adventurous, and consider what challenges you could take on in the future…

Safe Adventures.

JEWEL: I like the question about adventure, that was a pretty cool question. Um, cause I don't think we really think about like adventure like that. Right. and I think in the way that you ask the question, you phrase it, like it makes you think about what adventures are you taking daily or weekly or monthly, and either maybe thinking about some things that you want to do that you haven't been able to do. And so I think that's a pretty cool question because I've literally from last year, just started, I guess, living in a venture. Like I just started like being in a space where I want to do things that I've always wanted to do. Cause I think, you know, when you become a mom or a wife and your life mergers with other people's lives, then you lose sight of some of the things that you wanted to do. So I think it's pretty cool. To, be in a space now where I can do those things and I'm doing those games even despite the seizures. So I think it's a, I think that was pretty cool. It, it, outside of the question. The question is I think my goal, one of my goals is to eventually run a full marathon.

FRAN: yes.

JEWEL: hopefully before I'm 40. Yes. I'm 34. So I'm like maybe, maybe in the next year or two, you know, I'll start training for a marathon. Definitely want to do it. Either by 40 or before for you. But 40 is like the, Yeah, I don't know. I guess I would have to do a little bit more research on like, which. I actually want to run. I know as like a five borough one. It's pretty like, somebody was like, you, you spend the night in Central Park and attendant, like it's crazy.

FRAN: That sounds awesome.

JEWEL: Yeah. But it's cool.

FRAN: I'll have an excuse to go back to New York.


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