Episode Transcript
[00:00:10] Speaker A: Hello. Welcome. You're listening to seasons one of narcolepsy navigators, brought to you by naps for life, narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kelly Boga, the founder of Naps for Life Narcolepsy, and welcome to our stories.
Hi, everyone. Welcome to Narcolepsy Navigators. This is Keely. I'm your host. And today we have two special guests. One iris, our marketing manager. And our special guest today is Matilda. Iris and I both have narcolepsy type one. And welcome to Matilda's story.
[00:01:00] Speaker B: So, for those of you that do know or don't know Matilda's story, obviously she has been called a medical marvel, a warrior in pajamas, because I did my research, and literally, like the girl who fought sleepiness better than anybody. Armed with a double espresso. Well, at three years old, she was diagnosed with narcolepsy, making her the youngest person to ever face this challenge. And her journey was documented in the heartfelt memoir waking Matilda, penned by her mother, Claire. So, Matilda, please introduce yourself.
[00:01:36] Speaker C: Okay. I'm Matilda, 17 years old, and I've had, obviously, narcotics since I was three, so. Yeah.
[00:01:43] Speaker B: And you're living in the US now?
[00:01:45] Speaker C: Yes, yes. I'm currently residing in LA. Yeah.
[00:01:49] Speaker B: Despite the british accent, she is.
[00:01:53] Speaker C: Yeah.
[00:01:54] Speaker B: Sorry, first question I have to ask, have you read the book?
[00:01:57] Speaker C: I actually have read some of it. I started reading it must be one or two years ago, and I got maybe a couple chapters in, but I couldn't. I couldn't finish it. It was too raw. My. I never really, like, I knew what my mum had gone through in theory. Right. But when you're reading it from her perspective, it's just a lot more emotional. And obviously, I don't remember half of that stuff, so, you know, so I just had to stop reading it. It was just too much.
[00:02:22] Speaker B: I can't imagine. I can't imagine reading that about myself.
[00:02:26] Speaker C: But, no, I have read some of it.
[00:02:28] Speaker B: So does it feel like you're kind of reading maybe from, like, it's not about you? It's kind of just the weird. It is, but it isn't, kind of.
[00:02:35] Speaker C: Yeah. I think I remember feeling like it was odd because in the back of my mind, I knew it was me, but it didn't sound like it was about me, if that makes any sense.
[00:02:44] Speaker B: Yeah. So you have narcolepsy type one. Correct.
[00:02:47] Speaker C: If it's got cataplexy, then, yes, cataflex. Yeah.
But yes. Yes. I have Martin arclops with cataplexy.
[00:02:54] Speaker A: So, Matilda, do you have siblings?
[00:02:59] Speaker C: I do have siblings. I have an older brother and an older sister. My older sister is currently in Scotland, and my older brother is at UC Santa Cruz.
[00:03:10] Speaker B: Oh, wow. Different. Completely different locations.
[00:03:14] Speaker C: Yeah.
[00:03:15] Speaker B: I don't know which one I would prefer.
[00:03:17] Speaker C: I don't either, but that's what I'm trying.
[00:03:22] Speaker B: So have you actually told your story before, from your perspective, or is this the first time?
[00:03:28] Speaker C: I had offers. I've had once an offer to speak at a conference, but I. From my perspective, before, no, I haven't. This is my first time.
[00:03:36] Speaker B: Yeah, but can imagine. It's probably, you know, quite difficult to have some privacy, maybe when people. Everybody wants to know, obviously, your story.
[00:03:47] Speaker C: I mean, I think when I. When my mom's book first came out, I was just like, wow, I'm gonna be famous.
When I was like, what, like eight at the time? Maybe. Maybe a bit older. Ten, probably. And I, you know, I was like, oh, I'm gonna be famous.
[00:04:02] Speaker B: So cool.
[00:04:03] Speaker C: And then now I'm just like, random people know me. That's so weird.
[00:04:10] Speaker B: It's just. I don't know. Do you ever. Would you go to the conferences with your mom and I?
[00:04:14] Speaker C: Yeah, I do. Yeah. I've been to. Oh, gosh, I probably can't count them all right now, but I've been to a number of conferences before. Yeah.
[00:04:21] Speaker B: Wow. So what's your, like, earliest memory like, that you kind of have of, you know, because you probably don't remember yourself without an arc. Elpsy. But it's just. Yeah. What's the earliest kind of memory that you have? It's kind of. You realized that there was something different.
[00:04:36] Speaker A: About you and how old were you, if you remember?
[00:04:38] Speaker C: Yeah, I actually have memories of my time in hospital when I was three years old. Yeah. I do remember the doctors taking my blood and me basically screaming at my mom, not wanting to do it. And I do remember these two kind. Well, I guess they're probably more like volunteers, but I saw them as nurses that came in and played barbies with me, and I'd never seen a Barbie doll before, so I was, like, really happy about it.
And I remember, although it might be more from pictures that. That I've seen since then, playing with my sister a little bit and with my brother and sister in our house in the UK. So I do remember that, actually.
[00:05:17] Speaker A: Yeah, I was going to say, so your memories of the hospital were positive ones, apart from taking the blood, because that would scare any child at that age.
[00:05:25] Speaker C: Yeah, I would say they're a bit of both. I think the nurse one stayed with me for a really long time because I, growing up, I could not stand male doctors, so I only wanted women to because I remembered the good experience. But I did remember three male doctors, and that was. And, you know, they were the ones I saw drawing my blood. So I was. Yeah.
[00:05:49] Speaker B: Yeah. Because there were quite a number of incorrect misdiagnosis. Let's say I remember with even brain tumor they diagnosed you with.
[00:05:58] Speaker C: Yeah. I mean, they even, like, didn't die. They said, oh, she can't have narcolepsy, she's too young. That kind of thing.
[00:06:04] Speaker B: Exactly. They didn't think it was possible.
[00:06:06] Speaker C: Yeah.
[00:06:07] Speaker B: I think that's probably one of the reasons why your story is most interesting. Of course, it's not obviously the age as well, I think, but it's definitely the fact that it took so long to get correct diagnosis and the lengths that your mom had to go through. And I think for a lot of us with narcolepsy, it's amazing to see that your entire family, like, uprooted and really dedicated, you know, their life to advocacy work and to getting answers. And it's sometimes rarely the case with the understanding. So I just think from your perspective, how aware are you or are they as supportive of these things?
[00:06:51] Speaker C: I'm very aware that I was blessed with a supportive family. I think my mom's probably the most supportive. My older siblings are supportive as well. They. They're obviously in different places now. But, yeah, I mean, it was, you know, it was a good environment to grow up in. And I went to a school that was, oh, my gosh, so supportive. You know, I had a mat back to the classroom where I could sleep, and I didn't like being outside the classroom in the nurse's office, so they just let me sleep in the classroom, you know, so why was that? I think I had a fear of probably being ostracized more than I already, you know, not that they made me feel that way, but. And I had been previously sleeping in a nurse's office at a prior school, and I just. I didn't like it. It was just not fun.
[00:07:29] Speaker A: Let's go back a bit after you had those blood tests and stuff. You remember those positive experiences with the nurses.
What's your sort of next memory? Is it still in England or you have moved now?
[00:07:41] Speaker C: Oh, I do remember moving. I remember our first, actually, I remember my parents checking out California beforehand and we stayed with some friends in Princeton, New Jersey, I think. And I remember the new apartment in LA and going to a new school, roughly. But my memory is obviously banned because of sleep deprivation like us all, so it's only fragments.
[00:08:05] Speaker B: So what do you remember? I mean, your journey to getting the correct dynasty. Remember anything or. And what age were you actually diagnosed? Was it actually three or a bit?
[00:08:15] Speaker C: Yeah. No, it was three. The can't remember his name. That sounds terrible. But there was a doctor, of course, in the book and they ended up diagnosing me. Or so, you know, saying, I think this is what she has. And I do remember the car drive up to Stanford. Actually, I had a box of coloring by my side and I was just doing some coloring on the journey and then falling asleep most of the time.
[00:08:35] Speaker B: You know, you have remarkable memory.
[00:08:37] Speaker C: Yeah. I mean, long term. Yeah. Not short term.
[00:08:40] Speaker B: Seriously, my earliest memory is like eight minus five.
[00:08:45] Speaker A: But I have a sister that remembers stuff when she was three.
[00:08:48] Speaker B: So definitely what I've read most of the book I think stood out was the fact that it was the cataplexy that really helped them be able to diagnose narcolepsy.
[00:08:56] Speaker C: Yeah.
[00:08:56] Speaker B: And I think obviously from our perspective, me, I have cataplexy as well. So does curly. And we always say it's like the worst symptom if we could, we don't want to deal with it. So how has your journey been with the narcolepsy symptoms? Which ones do you struggle with the most, which ones you don't?
[00:09:12] Speaker C: Yeah, I mean, obviously as I grew older, my meds changed depending on my needs. And yeah, my karaplexy is pretty under control at the moment, unless, you know, something really exciting happens or, you know, someone really makes me laugh. And it also depends on when my medication wears off course. But, yeah, I think I'm doing pretty okay on medicine at the moment. Uh, yeah, not too bad.
[00:09:36] Speaker A: So I want to go back to when you were little and you, so after they, after you were diagnosed, what, what do you remember of symptoms that you were having then?
[00:09:48] Speaker C: Oh, I don't really remember much about that. I know.
[00:09:51] Speaker A: What's your, what's your earliest memory of something that you felt uncomfortable about in.
[00:09:56] Speaker C: Your body, like ostracization or something?
[00:09:59] Speaker A: May, I don't know, maybe it didn't feel on the unfamiliar to you because it's all you ever felt, but like, okay, because you had other siblings, like, so at what point did you notice within yourself that things that were happening to you was not happening to your older brother. I mean, your younger brother or your older sister, like, say, the cataplexy or you being tired. At what point or what age did you think? Oh, that doesn't happen to my sister.
[00:10:25] Speaker C: I think it registered probably at a very young age that I was not the same as my siblings. But I think that was mainly because I looked around me and I noticed, like, this isn't happening to them. You know, this is only happening to me. And I think, you know, when people, like, for. I remember, like, when I was younger, you know, people would, like, sometimes try and catch me if I was having cataplexy, like, if, you know, I was really falling. No, that happened often. But I think that kind of idea of knowing that people are helping around you but not seeing the same with your siblings, sort of. Yeah.
[00:11:02] Speaker A: How did that make you feel?
[00:11:04] Speaker C: I don't think it registered as being anything unusual at the time because I just. I was so used to it, you know, growing up, and I think when I went in school, that's when it started to change.
[00:11:16] Speaker A: Do you want to expand on those feelings?
[00:11:20] Speaker C: Yeah. Going in school, I just remember, you know, my first school was a Spanish speaking elementary school. So, you know, first off, there was the language difference, and then the second one was the fact that I was in the nurse's office, and that just felt very, you know, it just made me feel very alienated from everyone because I always had to go to the nurse's office if I need snap. And then eventually I wasn't there for long. I stayed there for only, like, a couple months or something. And then I went to the school I grew up in, which was.
It was Catholic, actually, and it was, as a result, it was very, you know, they take care of you. They give you everything you need.
[00:11:57] Speaker B: Were your friends aware of it? Your school and all my friends.
[00:12:00] Speaker C: Everyone at the school knew, you know, and it wasn't a weird thing or anything. They just. They knew if I needed something, and they knew sometimes I had to take meds. Like, there was a time when I had to take medication in the middle of the day, and, you know, they knew that was normal.
[00:12:15] Speaker B: Did you have any problems throughout the classes, like staying asleep?
[00:12:18] Speaker C: Yeah. If I felt sleepy, I knew I could go to. I could just raise my hand and tell the teacher and the teacher. I would just go to the back of the classroom when I was little. And the moment that happened, the teacher would take the entire class into quiet time. So we would do something like grammar book there would be that quiet time, and people, I would get the occasional person saying, oh, I really wish I was going for a nap or something. Like, I can hear you, you know, but I just. At the time, I was just like, okay, well, they don't really understand. Like, they can try, but they don't really understand. Not that they should say that, you know, we are all little kids, so.
[00:12:52] Speaker A: I, like, the teacher made those adjustments.
[00:12:55] Speaker C: Yeah.
And when I was. When I grew older, probably about, say, 7th and 6th grade and stuff, I would fall asleep in my science class, actually. And because, no offense, but science is boring, you know, and my best friend, who I still keep in contact with, actually, and she would sat next to me in my science class, and she would just take my notes for me when I put my head down on the desk. So I moved my head just down on the desk, and the teacher would know that that was fine, so.
[00:13:26] Speaker A: Oh, that's nice. It's nice that you had that supportive friend.
[00:13:29] Speaker C: Yeah, I was. I was always like, oh, you. You're gonna take my notes? She's like, I remember that first time. She's like, yeah, I don't mind taking them. I was like, sweet. Now I don't have to worry about taking them myself later.
Yeah.
[00:13:40] Speaker A: Everyone needs a friend like that in the class.
[00:13:42] Speaker B: Yeah, it was very sweet.
[00:13:44] Speaker C: And obviously, she was taking her own notes at the same time, so.
[00:13:47] Speaker B: Wow, that's an amazing friend.
[00:13:49] Speaker C: Yeah.
[00:13:50] Speaker B: I don't know. I don't know if I should even ask this, but do you have any awareness of how unique your story is.
[00:13:57] Speaker C: To a certain degree? I think I know that my mom's book made a really big ripple, I guess, in the community. But I think until you said all those things in the beginning, you were saying all those nicknames. I was like, what?
[00:14:12] Speaker B: I apologize for that, Wendy.
[00:14:15] Speaker C: It's all good. I think I'm sort of coming into that a little bit more, that realize I'm obviously older than, you know, growing up, not so much.
[00:14:23] Speaker B: I think that's quite normal, because obviously your life is, you know, you live your life like a normal person, you know, wherever, everything. And I think especially in the narcolepsy community, even me, not a lot of people diagnosed so much later on, and even us, we struggle to have that kind of awareness or really acceptance for a while, not normal, but I think it's. It's just remarkable. We hear a lot of stories here on the podcast, and. And we've never heard one like yours before. Oh, yeah, yeah.
[00:14:50] Speaker A: I only know one of a person who had it from birth.
[00:14:54] Speaker C: Oh, wow.
[00:14:55] Speaker A: Yeah. And she didn't get diagnosed until she was, like, 15.
[00:15:00] Speaker C: Okay.
[00:15:00] Speaker A: She spent most of her years in hospital as a child, just not knowing. They just didn't know what was wrong with her. And when she was a baby, people used to say to her mom, oh, you're so lucky to have a baby that sleeps all the time. She's so quiet, she's so peaceful. And the mom would be like, yeah, well, I can't feed her if she's always sleeping. They're like, oh, you're so lucky. You know, you shouldn't complain about these things.
[00:15:20] Speaker C: That would be a lot more difficult than having it since the age of you. But I obviously don't remember.
[00:15:25] Speaker B: But I think for me, it's more in terms of the support, the incredible support system you seem to have had around you, especially in school, you know, because obviously I know for me, when I went to university, I wasn't diagnosed, obviously, until I was 28, like my professor. I remember once I fell asleep and I put myself in a front row so I wouldn't write, and then I did anyways. And I remember waking up with him, dropping a loud book next to my head.
[00:15:52] Speaker C: Oh, I thought you could say on your head.
[00:15:55] Speaker A: I was like, wow, thank God.
[00:15:57] Speaker B: No, that would have been abuse.
It was almost, you know, because I was sleeping in his lecture. And I think that's more the normal story that we hear because people are aware, you know, of narcolepsy, unfortunately. Do you think your experience would have been different if you had remained in the UK?
[00:16:15] Speaker C: Yes, I think from everything I know, because I have gone to school in the UK since, but I think it's just honestly not the best education system, and they're really shoddy when it comes to trying to give you accommodations. Like, one school I was in in the UK. Again, the only accommodation I could really have was, like, a place where, you know, someone who was physically disabled would go, right? So I had that bed, but then there was this issue wherever I. Some of the kids in school would try to, like, open the locks of the doors. So I was like, seriously, is this safe? So then I would go. So then I went to the nurse's office. But the issue with me staying in the nurse's office is that injured kids kept coming in.
[00:16:55] Speaker A: So it's like, how hard is it to get a little room?
[00:17:02] Speaker B: That was their solution. What was their solution to that?
[00:17:05] Speaker C: Well, I had to deal with it.
[00:17:06] Speaker B: Just had to deal with it.
Well, I'm currently in Portugal and cos in the UK, but I grew up in London as well, curly, like, so don't know exactly what part of the UK you're from.
[00:17:17] Speaker C: I'm technically from Bristol, but I'm talking about Scotland, where I was.
[00:17:20] Speaker B: Ah, yeah, okay. Yeah. Just wanted to make sure because I definitely know schools in London. I don't even. I don't think we even had a nurse or something.
[00:17:30] Speaker A: Yeah, I remember the nurse's office. Yeah. But we never went there unless you were really sick. I remember going there. If you, like, had a really bad period or something, they'd let you lay on the bed for maybe half an hour and then they'd send you back.
[00:17:43] Speaker B: Just stay in the hole and wait for the parents to come.
[00:17:46] Speaker C: My really good school here growing up, they had a, like, the quote unquote nurses office was actually also like the reception office place. So basically, if you had, like, a wound or something, you'd go there and one of the many people there would just grab some band aids and stuff, you know, like, clean you up and then call your parents and send you home, that kind of thing. So we didn't actually have a proper nurse's office and that's what.
[00:18:13] Speaker B: So how long did you study in the UK for?
[00:18:15] Speaker C: Oh, only like two years, probably. I was. I've been online for a good couple of years because, well, on and off for a couple years. Obviously Covid happened and I don't know, online is just so much easier than actual school.
You can choose your own timetable, you can nap when you want to, and then. Yeah, so I wasn't in there for very long, Covid, and a little afterwards as well.
[00:18:40] Speaker B: I was just going to ask if, obviously, Covid, for a lot of people, especially even with, you know, chronic illnesses and invisible illnesses, they were very affected and a lot of people in a very positive way. So I was just wondering if that was your experience or if you noticed anything different before and after.
[00:18:55] Speaker C: Yeah, I think the one downside, I think, for everyone in Covid was the fact that, you know, you don't have that same social interaction with people. And I'm not an extrovert by nature, so I was fine with that. But I do want to, you know, meet friends and stuff without having to wear a mask. Not that I don't understand the reason for it, but I think that was a drawback. I do think I enjoyed it a lot more, though, because I just, you know, I don't have to get up at, like, 07:00 a.m. and go to school and get dressed in the uniform, you know, or come back at, like, 04:00 p.m. and then do homework, you know. But I also. I enjoyed it because my mom actually taught me some English. She did. She was doing an MFA at the time, so she did this whole english course with me on different books, which is really good.
[00:19:38] Speaker A: Oh, that's nice.
[00:19:40] Speaker B: English seems to be your thing as well, then.
[00:19:41] Speaker C: Maybe. Yeah, I love writing and reading. Yeah, same here. Yeah.
[00:19:46] Speaker B: I study history. It's a bit different, but.
[00:19:48] Speaker C: Oh, I love history. Don't get me started on history. I can start talking all day.
[00:19:54] Speaker B: It's a 22nd.
But I actually wanted to say. I don't know. But in terms of, obviously, there's a lot of public perception, and, you know, it kind of obviously must have shaped somehow your experience, and I don't know if. How kind of that affected you and if there's any misconceptions that you'd like to correct.
[00:20:14] Speaker C: I think one of the interesting misconceptions I noticed growing up was that just because you have narcolepsy means you can't do anything. And I find this happens with both the community of people with narcolepsy when they come into it, and also, in general, the public. Right. And I think something. My mom, narcolepsy isn't you. It's only a part of you. And that really shaped my idea of what narcolepsy was, because I never really considered it to be, I don't know, as much of a drawback, I guess you could say, you know, it gives you so much, like, creativity, and it brings you into this whole community of other people, you know, that you never would have met otherwise. And I'm a positive thinker, so, you know, I always try and think of the good things, not the baddest.
[00:20:57] Speaker A: No, that's really good. That's a really good mindset to have.
[00:21:00] Speaker C: Yeah, but I think. Yeah. The misconception that we can't do anything, like, I've heard of people who weren't allowed to drive just because they have narcolepsy, whereas if you're safe and, you know, take a nap and then driver, you know, I just. I think it's very limiting if we have that mindset.
[00:21:16] Speaker A: Have done your driver's head yet?
[00:21:17] Speaker C: No, we don't own a car, so there's no point.
[00:21:20] Speaker B: Oh, I love driving. So as a person with narcolepsy, I can definitely say if they took away my driving, I would cry.
And I think I love what you said about the creativity.
[00:21:31] Speaker C: Yeah.
[00:21:31] Speaker B: Because that is something we always talk about. And there's something about people with narcolepsy being extra creative or, like, tapping into something that we don't quite know.
[00:21:43] Speaker C: Yeah. I think it's really like a sort of magical, I guess you could say, aspect of neuroclipsy. You know, I always. I like to think of neuroclipsy as, like, good and bad. Right. The bad is obviously that you have extreme sleep deprivation amongst, like, cataplexy if you have type one, and, you know, all manner of other sleep related stuff. But the good news is that, you know, you have creativity and all this stuff that you can work with.
[00:22:10] Speaker B: I do love it. I do. Sorry. It's because literally, your mom said something that took me years to figure out. And in my blog, if you go back to my very first post, I wrote narclipse the. Like, it's my life. Only years later that I actually changed it to narcissist a part of my life. My life, you know? And I think that is something that. It's amazing that she taught you so early on, you know, because you couldn't let it define you.
[00:22:37] Speaker C: Yeah. And I think it's made it so that, you know, I don't go about my day thinking, gosh, you know, it sucks that I have to go for a nap. It's more like, okay, so I have to go for a nap, and then what am I gonna do with the rest of my day?
[00:22:49] Speaker B: I love that.
[00:22:50] Speaker C: Yeah.
[00:22:52] Speaker A: Matilda, do you take regular naps? What's your sleep hygiene night?
[00:22:55] Speaker C: It's probably a little all over the place. I usually have one in the morning because I kind of wake up in the mornings early, and I don't really like falling back to sleep. Even if I'm tired. I just. I just want to get up and, you know, get on with the day. So I normally have one in the morning and then one or two later in the day as well. And my sleep hygiene could probably be a bit better, but I think it's okay.
[00:23:18] Speaker A: That sounds much better than a lot of people.
[00:23:20] Speaker B: Mine, definitely. Last night I did not sleep, just by the way, you know, do you suffer with insomnia or sleep paralysis? Hallucinations?
[00:23:28] Speaker A: What's your experience with that?
[00:23:29] Speaker C: I do have hallucinations. I have hypnogongic hallucinations, but I don't have them all the time that I can remember, obviously. I mean, like, when I was really, really little, like every little kid, you know, you have more nightmares when you're younger, right? So I would have nightmares all the time. But obviously, they're so real. I would wake up and, you know, think someone had, like, murdered another person or something. Or, you know, like, if I watch, that's why I have to be really careful watching World War Two movies and stuff, because if I watch it and then I go to bed, then I end up dreaming about it, and then I'm in the midst of World War Two, and I have done that before.
[00:24:02] Speaker B: That is so fascinating. World War Two is my favorite subject.
[00:24:05] Speaker C: I love world war two as well. That's why I like to watch the movies about it.
[00:24:08] Speaker A: But, you know, it's not so nice when you're being blown up.
[00:24:12] Speaker B: Oh, that's why even me and Curly say all the time, we can't watch horror movies.
[00:24:16] Speaker C: No, I can't.
[00:24:17] Speaker B: Yeah, because our brain comes up with enough to last your own horror movie.
[00:24:24] Speaker C: Gonna say, but I don't have insomnia or sleep paralysis.
[00:24:29] Speaker B: Oh, thank God.
[00:24:30] Speaker C: I do grind my teeth, though, if that counts as anything.
[00:24:33] Speaker A: Yes.
[00:24:34] Speaker C: Yeah.
[00:24:35] Speaker A: Bruxim is very real.
[00:24:36] Speaker C: Jaw pain. Yeah, bruxism. The jaw pain from it.
[00:24:39] Speaker A: See?
[00:24:39] Speaker B: And I think. I think it's something that they don't really usually talk about as well.
[00:24:43] Speaker A: LinkedIn or they should, because it seems.
[00:24:47] Speaker B: Like a lot of us do it.
So how do you feel? Obviously, your mom does a lot of advocacy work, and I think times when you're the subject of the book, it's that expectation of, oh, yeah, she's going to be the next big advocate. But, of course, you're your own person, you know, and I always think nobody, you should never do what people expect you to. You should always do what you want to do. So how do you see your future in terms of advocacy life? Does it interest you? Does it not? And if it doesn't, we completely respect that, and I understand it. So don't be afraid.
[00:25:19] Speaker C: I think it's a, it's a good question. I think I would definitely be interested in, you know, speaking at conferences or helping other people out who have narcolepsy. But I don't think I would get into the same sort of zone as my mom. I think I'd like to do something like actually being a therapist. I would like to do that. Yeah. Yeah.
[00:25:37] Speaker B: Interesting.
[00:25:38] Speaker C: Yeah. Because I want to. Obviously, when you have narcolepsy, you understand, you know, a good portion of hardship that people go through. Right. But I also think, I don't know if this is true or not, but people tell me that I'm very, you know, sympathetic. And so I was thinking, use that for therapy. And help other people out, even if they don't have narcolepsy, you know.
[00:25:59] Speaker A: That's very good.
[00:26:00] Speaker B: That's amazing. Definitely we need more therapists with narcolepsy that understand and definitely more, you know, people with narcolepsy in the medical community. I would say we can maybe educate other people.
[00:26:13] Speaker C: So true. So true.
[00:26:14] Speaker B: You know, besides being a therapist, you said you like to write and everything. What kind of writing and what's your artistic side, let's say, that you attribute to narcalepsy.
[00:26:22] Speaker C: So I would say I enjoy. I like doing crafts, actually making things. I enjoy writing a little bit. I really should do more of it. I've only written a little in the past couple years, but I have written, actually wrote a short story and for a class once, and my teacher had the story, along with all the other kids stories published in this, like, limited, you know, booklet thing.
[00:26:48] Speaker B: Oh, nice.
[00:26:51] Speaker C: And then I realized that there was a typo in it, so.
[00:26:53] Speaker B: Oh, no.
[00:26:57] Speaker C: It, like, cut out, like, half of the storyline, so I was like, oh, great.
[00:27:01] Speaker B: It just stay was. It was meant to be that way. That was intentional artistic choice.
But, you know, I think you obviously, you're probably the youngest person I think, we've interviewed so far, right?
[00:27:13] Speaker A: Yes.
[00:27:14] Speaker B: Do you have any fears about the future, especially, I know, in terms of medication or, you know, consequences long term? Is there anything that you fear or.
[00:27:24] Speaker C: Think about narcolepsy related or just in general?
[00:27:26] Speaker A: Both.
[00:27:28] Speaker C: I think. Obviously, the biggest question of our generation has to do with, you know, climate change and stuff, but narcolepsy related. I think one of my biggest fears is probably the. Because I do know that I have a very maternal aspect, so I do know that I want to have kids someday, and I think I'm worried that I'm gonna pass it on to them. That's my biggest fear. Again, narcolepsy has its bad and good sides, but I'd rather not pass it on to one of my kids.
So. Yeah, that's probably one of my biggest fears.
[00:27:59] Speaker A: That's understandable.
[00:28:01] Speaker C: Yeah.
[00:28:02] Speaker B: Yeah. Well, we don't have kids, so that's our big Oz, probably. I hadn't actually thought about that.
I just. I actually thought you were going to say that it was the pregnancy that would scare you, because usually you have to. Medication.
[00:28:16] Speaker C: Yeah, I mean, I probably wouldn't be super thrilled, you know, going through that, but at the end you get a baby, so, I mean, yeah, it would suck not having medication. And, you know, I've heard of all sorts of, you know, stories, you can't take any medication, and you then are sleepy all day.
[00:28:36] Speaker B: When was the last time you went.
[00:28:38] Speaker C: Without medication during the day? Yeah, a couple years ago.
[00:28:43] Speaker A: Do you remember how that felt?
[00:28:44] Speaker C: Yeah, I accidentally didn't take my meds that day. And by accidentally, I mean I completely forgot.
So I was thinking to myself, wow, I feel really tired today. And the good news was it was a home day. Anyway, so I. You know, I was like, man, I feel so tired. And we had these cats at the time, and they were just kittens. They were staying in this one room, and I went in and I just hung out with them, and I ended up falling asleep with them, like, multiple times during the day.
And I kept on saying to my mom, I just don't know why I'm so tired. And my mom's like, wait a second. Have you taken your meds today? It's like, oh, no, I haven't.
[00:29:19] Speaker B: Oh, that's horrible.
[00:29:21] Speaker C: It was, like, super. You know, it felt rough. It's just you constantly feel exhausted, and your body doesn't have any. You just. You fall asleep, and then you wake up and you're like, I don't feel refreshed. I need to fall asleep again.
[00:29:35] Speaker B: Yeah, I think that's. That's probably one of my thing, because obviously, I know in the US, it probably was one of the best choices your parents made, because they have so many choices in terms of even medication or, you know, support. I live in Portugal, not so much here, and right now we undergo a lot of shortages of medication. I don't know if that happens in the US.
[00:30:00] Speaker C: I don't know about that. My mom's wanting it.
[00:30:03] Speaker B: I don't think it really does. I think this Europe thing as well, that happens because in the UK, I think, currently. Does it happen sometimes, too?
[00:30:10] Speaker A: Yeah, it also got happening last year.
[00:30:13] Speaker B: Yeah. See, we are currently, again, no medication in any of the pharmacies.
So I think that is really brilliant, but. So do you think you're gonna stay in the US, or you think about going back to the UK and making some changes or. I don't know.
[00:30:31] Speaker C: I don't know if I'm gonna be, like, a superhero that saved the entire world.
Yeah, I guess. I think I would say I may be going back to the UK for college, but I don't really know yet. I. It sort of depends on the next, like, year or so, and otherwise I would stay here even after I come. If I do go to UK for college, I would come back because this is home, so, you know.
[00:30:59] Speaker B: Yeah, I was going to say, do you? Because obviously there must be people in your life that you meet new people that have never read your mom's book. They have no idea about your. So how does. How do you feel? Do you tell people straight away, or is it something that you keep to yourself, like.
[00:31:21] Speaker C: Well, it depends, honestly, on which part of the world you're in. I found if you go to an America, up to an american, and you do it, it's probably gonna get a positive response if you do the same.
When I was in Scotland, I tried that with people in school, and it did not end well.
[00:31:37] Speaker B: Really?
[00:31:38] Speaker C: Yeah, my first school was pretty bad. I was actually, like, kind of bullied there. So, yeah, I went to another one later on, and it was. I just didn't mention it to anyone unless it was my. My best friend there, so.
[00:31:55] Speaker B: Really? Wow.
[00:31:56] Speaker A: So it was like, kept on the.
[00:31:57] Speaker C: Rap and my teachers knew, but that was about it.
[00:31:59] Speaker A: Oh, wow.
[00:32:00] Speaker B: Well, there's not. I don't think I know a lot of people in Scotland with narcissistic. So there must not be a lot of awareness there.
[00:32:07] Speaker C: I don't think so.
[00:32:08] Speaker B: Yeah.
[00:32:09] Speaker C: But, you know, I. I've learned sort of that you can go up, you can approach a subject, but unless someone specifically asks you, it's probably best to avoid. Unless necessary, obviously.
[00:32:22] Speaker B: Yeah. See, that. That's very interesting. Would you think you'd go back to Scotland now? Would you still have that same approach, or would you open to talking about it?
[00:32:33] Speaker C: I don't know. I mean, honestly, my first. My first thought is always, I just want to get it off my chest so people know. Right. And then I don't have to deal with it later on down the road, but, you know, you sort of have to read the room and the situation at hand, so.
[00:32:48] Speaker A: Yeah, that's true.
[00:32:49] Speaker C: You don't really want to get a negative response to it.
[00:32:51] Speaker B: No, actually, I actually think that's really. That's a great way to put it. Yeah.
[00:32:56] Speaker A: Reading the room. Because not everybody is everybody's kind, and not everybody is even emotionally intelligent enough to take in information sometimes. So even if you tell them in good faith or as a pre warning or a pre whatever, they might not even be ready to receive it at that particular moment in time.
[00:33:15] Speaker C: Yeah, I think it's, you know, really important that we think about that.
[00:33:20] Speaker B: No, definitely. I think that's one of the. Obviously, especially for me, I was diagnosed when I lived in Africa, so in Africa, there is non awareness, and it was, you know, there's a lot of things like even about Scotland. Like, imagine in Africa, you know, people sometimes can associate it with. With, you know, witchcraft or possessions or. Wow.
[00:33:43] Speaker C: Okay.
[00:33:44] Speaker B: There's still a lot of misunderstanding. Yeah. And a lot of crazy thinking that it's just. Yeah, it's just, you know, old traditions or old mindsets. So I do like that because I'm quite like you. Like, oh, I just want to get it off my chest. Everybody knows.
But I like that you said that, because it kind of made me rethink my approach and be like, wait, no, read the room again.
[00:34:07] Speaker C: It just depends on where you are in the world. I think every culture is different, and every. Every person is different as well. So.
[00:34:15] Speaker B: So your mom does a lot of conferences, but are they mostly in the US, or do you.
[00:34:20] Speaker C: The UK at the moment, quite a few of them are in the US, but. But she does go to places like Europe in a couple months, I think she's going to one in France, maybe.
[00:34:32] Speaker B: Do you go to those ones, too?
[00:34:34] Speaker C: It honestly depends. Sometimes, you know, I. Normally, I try and go to as many as possible, but, you know, sometimes it's just too many in a row. Like, at one point last year, there was, like, three conferences back or something, and.
Or it was like two conferences or something, and my mom was swamp, and I went with her to one of them, and then there was another, I think, not long afterwards. Oh, yeah, there was another one she went to not long afterwards, and I stayed with friends, so.
[00:35:03] Speaker B: Wow, that's a full time job.
[00:35:05] Speaker C: Yeah, yeah.
[00:35:08] Speaker B: Literally sounds really, really, like, hard, you know? So it's a good thing a mom doesn't have narcolepsy, maybe, because that would kill me.
[00:35:17] Speaker C: I know. So, yeah, I go to the ones, like, I'm going to the one in Houston in the next month or so.
[00:35:29] Speaker B: With them. Easy or hard or do they wear you out?
[00:35:34] Speaker C: They do wear me out, I think, because obviously, you have to interact with a lot of people, and I'm an introvert, so, yeah, I can. I can be very social when I need to be.
And I do enjoy talking with people. You know, I enjoy hearing everyone's different stories, but I think when you get back to your hotel room, you're just like, oh, gosh, that was.
[00:36:01] Speaker A: So, do you. Have you made any friends with narcolepsy?
[00:36:07] Speaker C: Yeah, yeah, yeah, I did. I went to years ago now, but there was a conference called Florida, and it was. It was a really cool conference, actually. And there was a kid. There was a number of kids I met there. One of them, her name is hero. She's I don't know how they managed to choose a name that was so fitting, because obviously, she has neuropsychiatry, and she. Yeah, she's very nice person and, you know, keep in contact.
[00:36:31] Speaker A: Oh, that's good. So, Matilda, are you dating or have you dated?
[00:36:36] Speaker C: No, I'm not currently dating, and I wouldn't say I've technically dated anyone before.
[00:36:41] Speaker A: Okay.
[00:36:42] Speaker B: I wasn't gonna go there, but, you know.
[00:36:45] Speaker C: I'm more than open to in the future. Yeah, I'm not interested right now.
[00:36:50] Speaker A: Right now. Good for you.
[00:36:51] Speaker C: Yeah.
[00:36:52] Speaker B: Oh, good for you, hon. Trust me.
No, I think that's definitely, obviously, another, you know, part of your life that can also be really impacted by neurochlopsy.
[00:37:02] Speaker A: Yeah. Yeah. And challenging when you come to that new stage. I always say to people, because I was diagnosed when I. I started my symptoms when I was 15. I was diagnosed when I was 18, and I'm 41 now. That narcolepsy comes in waves.
[00:37:16] Speaker C: Yeah.
[00:37:17] Speaker A: Sometimes it's, like, really good. Like, I can remember being in my twenties, going to concert, standing up outside for the concert, like, 1 hour, and then going in for the concert, and then that's one another hour before the real act comes on, you know, the pre act, and then the real person comes on. And, um. And I did all this. And I think about this now. How. How did I do this? Like, how is it possible for me.
[00:37:41] Speaker B: To do wireless festival once in.
[00:37:44] Speaker A: In heels and everything fully with narcolepsy? How? Like, now I go straight to have my disability badge thing. I go straight on the disability door. I go straight in, and I get my seat straight away.
[00:38:00] Speaker B: No lining up.
[00:38:01] Speaker A: There's no.
[00:38:04] Speaker B: Sound like an old woman.
[00:38:07] Speaker C: I agree. I think it does come in waves. I think, you know, it depends on your age and the time of life, I think. Yeah.
[00:38:13] Speaker A: Yeah.
[00:38:14] Speaker B: So do you feel your symptoms have, did they change over time or.
[00:38:19] Speaker C: That's a question. I think it's sort of.
I know when I first got narcolepsy, I was vomiting from, actually, Xyrim. Like, my body couldn't handle it, but we created, like, a regimen that meant that I had a little bit of food with it, so my body was okay, and I had a probiotic drink to sort of settle the stomach, I guess. And I got used to the taste eventually, you know?
[00:38:48] Speaker A: But I think, yeah, it's really salty and it's horrible. I remember when I just started taking it, I'd have to take a mint afterwards. I'd have to have a drink of water. A lot of water. And then I'd have to take a mint after just to get rid of the taste because it just like saltwater. Yeah. It was like someone was feeding you water from the ocean.
[00:39:06] Speaker B: Like, yeah, well, we don't have dairy in Portugal, so I have no idea.
[00:39:12] Speaker C: I've also done. I'm on Zywave, actually, at the moment, and it's not salty. I can tell you that much.
[00:39:19] Speaker B: It's not as salty. So is that because do you feel like, obviously me, I've had to change my medication because it eventually wears off and then I have to change. Do you get that as well?
[00:39:32] Speaker C: Yeah, I think, you know, I've tried probably a good number of medications over the years, and Zywave was not Zyway. Xyrem was okay, but it wasn't like, it didn't make me sleep for the whole night. So when I got into Zyram for some Zywave, rather, for some weird reason, I started sleeping better.
[00:39:54] Speaker A: Oh, wow.
[00:39:55] Speaker C: Yeah.
Yeah. Even though, like, the scientists have all been like. But it doesn't actually have the same amount of, like, stuff that makes you sleep as siren does. So I was like, okay, well, apparently my body doesn't care.
[00:40:10] Speaker B: That's the fascinating thing about narcosy. Every single person is so different, you know, and the symptoms are so different for everybody. And that's what fascinates me the most of, like, because what works for you doesn't work for me. What works for me doesn't work for you. And then that question I actually wanted to ask, have you ever tried any alternatives, like, you know, the keto diet or, you know.
[00:40:32] Speaker C: Yeah, yeah, yeah. I have. I have tried keto, actually. I did it probably more so for weight loss when I was younger because I was getting really worried about my health.
And I did that with my mom, actually. She was very supportive about that. And we did that as well because of, you know, narcolepsy. And it did actually keep me awake, but it was very extreme. And I would say that it made it very difficult to go to a social event and then, you know, see a bunch of sugar in front of you and you're like, great. I can't help that.
So, yeah, I mean, at the moment, I'm not on anything, like, super special, but I have tried that kind of thing, and it does do the trick of keeping away with consequences.
[00:41:21] Speaker B: I think that is very interesting. I tried keto as well, not as extreme, because I can't really cook and I don't like it, but I think that's interesting. Because a lot of people do say your diet can be changed and that can make a big difference. But it is the extremity that you have to go to to change your diet, and that obviously impacts some other aspects of your life, like your social life. And is it worth it?
[00:41:49] Speaker C: Well, also, it ended up being right before we went to Scotland. So, you know, bad timing, and you move and you're like, okay, both.
[00:41:59] Speaker B: Did it eat there? Haggis.
[00:42:01] Speaker C: That is the traditional food. Yes. And the first time I saw it, someone said to me, you know what that is? I said, no. Do I want to know? They said, well, actually, it's like the intestines of different animals. And I was like, wonderful. Now I don't need to know. I won't eat that ever.
[00:42:17] Speaker B: That's as much as I know about Scotland.
[00:42:19] Speaker C: Yeah, don't worry. That's the worst.
[00:42:23] Speaker B: So, I just need to ask this, because since the beginning, I just. I think you're. Kylie would love to ask you.
So why did you decide to agree to an interview with us?
[00:42:36] Speaker C: That's a good question.
Well, why not? You know, I like the opportunity to, you know, try and interview, first off, my first one. And, you know, it doesn't do any harm.
[00:42:54] Speaker B: And you're natural girl.
[00:42:55] Speaker C: Thanks.
Yeah. And I think, you know, if I can help just, like, one person with narcopy, with something in my story, then, you know, it's worth it.
[00:43:07] Speaker B: There you go. See, it's in your blood.
[00:43:09] Speaker A: Cut right in.
[00:43:12] Speaker B: Last question. I have. Sorry, very last.
Have you thought about writing your own book one day?
[00:43:19] Speaker C: Oh, yes, actually, I have.
I have thought about it. I don't know. I don't know where I would start. That's the trouble. You know, there's so much.
[00:43:39] Speaker A: You know how you said you wrote the short story for class?
[00:43:41] Speaker C: Yeah.
[00:43:42] Speaker A: You could just start off with short stories of your memories. Like how you told me about the thing with the Barbie dolls. That's like a very distinct short memory. And you just do another one. Another. Before you know it, your book has just made itself.
[00:43:58] Speaker C: There you go. Yeah.
[00:44:00] Speaker B: That's how I did my blog. You know, it's called life in flashes, because it's literally flashes.
[00:44:04] Speaker C: Yeah.
[00:44:05] Speaker B: So you can take it. Fine.
[00:44:07] Speaker A: I don't need it.
[00:44:11] Speaker C: Yeah. I mean, I never actually technically finish a story that I write, so that would also be the issue. I'm terrible at finishing story.
[00:44:22] Speaker B: I can't.
[00:44:23] Speaker C: I get the idea for it and I write out all these little ideas, and I have, like, a long list of stories I've come up with ideas for. And I never finish them.
[00:44:31] Speaker B: That's my life story.
[00:44:33] Speaker C: Yeah, exactly.
A never ending story, definitely.
[00:44:39] Speaker B: I think that's probably an arc lepsy thing, too. I don't know.
[00:44:41] Speaker C: Maybe.
Yeah. But, yeah, I would definitely consider doing it.
[00:44:46] Speaker B: Can't wait.
[00:44:50] Speaker A: Watch this space, everybody.
If you could press a red button and get rid of narcolepsy, would you press it?
[00:45:01] Speaker C: Oh, that's a good question.
I don't know.
I think, first off, I don't know what it would be like without it. I think somebody who's lived ten years without Narcliffe would at least know whether or not they wanted to not have it. I think whilst there's obviously a lot of drawbacks to it, there's also a lot of bonuses, the creative creativity being one of them. I wouldn't really want to lose that. And I don't know if that would be impacted by, I'm guessing probably. And I mean, let's be honest, having a disability badge and stuff really helps things when you get into the best parking spots and stuff.
[00:45:45] Speaker B: Oh, I love that.
[00:45:47] Speaker C: I mean, yeah, I think I just don't know what it would be like without. So I don't know if I can answer that.
[00:45:57] Speaker B: What, so you wouldn't?
[00:46:01] Speaker C: Yeah, I probably wouldn't, but I don't know what it would be like beforehand.
[00:46:05] Speaker B: Anyway, so, crazy.
[00:46:09] Speaker A: Matilda, when you have been traveling, have.
[00:46:11] Speaker C: You used special assistance in the airport or.
[00:46:15] Speaker A: Yeah, in the airport.
[00:46:16] Speaker C: Um, well, we have gone to the airport before and I've been practically falling asleep because we were waiting in line for, like, instead of. But I think we were able. We either said no to a wheelchair or said yes. I can't remember. But anyway, not that I would normally pick yes, because obviously it sucks, but I think I was just, I just didn't care at that point. I was too tired and we had to get somewhere anyway, so I remember this guy, I think. I don't think we did it in the end, but I think the, this guy said to us, okay, well, why don't I do this? Why don't I take you like, and get you straight through this line? And so without the wheelchair, I managed to get straight through the line. I have had assistance. And normally I don't think when I'm traveling I need it as much because if you're on a plane, it's, you know, you just fall asleep half the time and the other time you just watch movies. So it's more like the airport that's the issue. But, yeah, you can usually as long as you do, the ticket ahead of time usually get through. And then for driving in a car, you can just nap half the time. So not really.
[00:47:25] Speaker A: For the future. If you ever decide to be a global trotter or I, if you ever decide to be into traveling, I recommend you take it on. It works wonders. I use it all the time. You never have to worry about missing your flights because it's the person's responsibility to make sure that you get on the flight.
So, yeah, it really, really helps because I was traveling from, when I was early, teenagers to go to Florida all the time to see my aunt.
And then you used to go, when you're under 16, you go with the air hostess and they take you through all the back parts of the airport where it's really great.
I turned 17, and then you can't go with the air horses anymore. You had to do it on your own. And the first time I do it on my own, and I hadn't been diagnosed with narcolepsy yet, but I already had the symptoms and I was like, oh, my God, this is the airport. So much bigger than I remembered because I was only used to taking all the bats ways. And then you have to remember about your flight and you constantly fall in asleep and things like that.
When I was much older, I realized there was such a thing as special assistance. I was like, oh, wow, that's amazing. They're just pushing you. You fall asleep, you know, someone will wake you up. Make sure you get on the plane and you don't have to worry about anything.
[00:48:43] Speaker C: That's nice. That's really nice.
[00:48:45] Speaker A: And trust me, it might not seem anything like if you're in a very small airport, like maybe Spain, like Madrid. The airport's really small. If you go to somewhere like JFK or like a really massive airport. Oh, my God, you wish like you had it, because when you don't, you look like you're drunk and Heathrow's horrible.
[00:49:02] Speaker B: Yeah.
[00:49:03] Speaker A: And people don't care if you're looking drunk in airport. That's the last person they're going to help.
[00:49:08] Speaker C: Yeah.
[00:49:09] Speaker B: Yeah, that is true.
[00:49:12] Speaker C: Yeah. Okay. That's good to know. That's good to know.
[00:49:16] Speaker A: So is there anything else you'd like to share or any, like, last words you want to say to the listeners?
[00:49:23] Speaker C: Yeah, just. Just don't let narcolepsy, you know, take over your life. It doesn't control you. You control it kind of thing, even if it sometimes feels the other way.
[00:49:38] Speaker A: That's nice.
So we usually end by saying, happy napping.
Happy napping, everyone. Happy napping.
[00:49:52] Speaker B: I'm not sorry.
[00:50:01] Speaker A: Yeah. Thanks for coming on. We really appreciate you sharing your story.
[00:50:06] Speaker C: Yeah, it was really fun.
[00:50:09] Speaker B: Like, cute. We feel so special.
[00:50:12] Speaker C: Yeah, it was super, super fun. I had many laughs throughout this instance.
[00:50:19] Speaker B: Don't worry. I think that's my creative side of literally. No, but seriously, like, we're so appreciative. Thank you so much. It's been really cool. I read the book years ago. Okay. I'm sorry. I'm gonna do it.
[00:50:37] Speaker C: Okay.
[00:50:39] Speaker B: I had to have a skin, you know, just quickly.
[00:50:41] Speaker C: But, yeah.
[00:50:41] Speaker B: So for me, thank you so much. It's been a pleasure. And you clearly have grown up, like, to be a very beautiful, mature girl. Like, I love your mom and your mom, like, your relationship with your mom, like, it's so beautiful to see.
[00:50:57] Speaker C: Yeah.
[00:50:57] Speaker B: You know how sportive she is.
[00:50:59] Speaker C: Yeah.
[00:51:00] Speaker B: So thank you. And thank your mom as well.
[00:51:02] Speaker C: So, yeah, it was really wonderful. Thank you so much.
[00:51:07] Speaker A: You're welcome, darling. Keep in touch. Matilda, thank you.
[00:51:13] Speaker B: Have an amazing day.
[00:51:15] Speaker C: Thank you. You too.
[00:51:16] Speaker A: For all the stuff you're going to be experiencing and doing in the future, I see bright things ahead for you.
[00:51:24] Speaker C: Yeah. I really enjoyed this. This is really great.
[00:51:27] Speaker B: Thank you, hon. We wanted to make it a good experience. I didn't feel like, you know, like.
[00:51:33] Speaker C: Yeah, I get that. It was really good.
[00:51:35] Speaker A: All right.
[00:51:36] Speaker C: Thank you so much.
[00:51:37] Speaker A: Bye, honey.
Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for it. Advice. Thank you for spending time here with us at narcolepsy navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
