S3E1 Sarah: Owning Narcolepsy - The Power of Laughing Back

[00:00:00] Speaker A: FOREIGN. [00:00:13] Speaker B: Hello, welcome. You are listening to season three of Narcolepsy Navigators brought to you by Naps for Life cic. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hyperplasia, hypersomnia and Kleine Levin syndrome. I'm Kearley Bogart, the founder of Naps for Life CIC and welcome to our stories. Hi everyone, this is Narcolepsy Navigators. I am Kiralee, your host. [00:00:47] Speaker C: And I'm Liz, your co host for today. And we both have narcolepsy type 1. [00:00:51] Speaker B: Today we're here with Sarah Alberton. She's from Los Angeles and welcome to her story. Liz, how was your weekend? [00:01:00] Speaker C: Mine was good. So I traveled home to see some friends. One of them is leaving for Australia and she was having a party in the evening. But I've got a full on week coming up. So I'm working five days this week when I usually work four days. And so I had to make the decision of like whether to go or not and how late to stay. I arrived about eight and I left about half ten. [00:01:25] Speaker A: So I did a good two and. [00:01:27] Speaker C: A half hours of socializing in the evening. And then I was like, yeah, I'm done. Gotta get that early night, save some energy for the week coming up. Which is a shame. I wanted to stay but got to be sensible. So there you go. How is your week currently? [00:01:40] Speaker B: There's been five days of just like continuous sleeping, like 12 hours in a day. Ridiculous. So I'm so glad it stopped on Thursday. So like start fresh, be a semi normal again. So yeah, yesterday I went to visit a friend in hospital because his son's not well, he's suddenly became sick. So I went to visit them and that was nice. And it was nice to see when I was leaving, like you only allowed two people in the children's ward at a time visiting. So when I was leaving, her husband had come with the oldest son. So then we got, she got to go out and have an E cigarette which she looked so much better than when I came hours before, which was nice. So I know that my visit helped somewhat. So that was good. [00:02:22] Speaker C: And how was your week, Sarah? [00:02:24] Speaker A: My week was all right. You know, Los Angeles doesn't usually get rain, so the days that it does rain I feel extra tired because it just, it's like harder to get up and get out of bed because we're used to the sunshine which I think does help My nerclopsy, when I get outside and like am out in the sun, it helps me wake up. Yeah, mostly. All right. The day it kind of rained, wasn't great. And there were a couple nights where I wanted to go out and stay out later for standup, but had to go home earlier than I wanted so that I could get back and drive safely and everything. So, yeah, there's that. And also I think it was. Might have been the week before last, but I had another cataplexy. My. Which I have even with the medicine, probably like once every three weeks or so. I always have full body cataplexies. Cause my body's just like, it's all or nothing. So my boyfriend said something funny and it was so funny that I fell into his arms and he caught me. He loved that because he's like, oh, that's a genuine joke. So, like, when I find something funny, it's like a professional thinks he's funny. And it's not faking. That's not polite laughter. That means you actually think it's funny. It's been so great, all of that. So it's. It's very nice living with him because he's been able to make it a little easier with everything. So that's been nice. [00:03:37] Speaker C: Is that a new relationship? [00:03:39] Speaker A: Three years. You know, we got together during the pandemic and we've been living together for two years. So then the most understanding person that I've ever dated that got the narcolepsy. But I think at that point I hadn't been in a serious relationship in a while. And I was kind of just done. I was like, hey, up front, here are the cards. This is what I have. This is. We were friends first, so he already knew that. But, you know, I kind of was. I decided a while back not to tolerate people in my life that aren't going to like, get it and empathize with it and like, actually understand it where I am. Good. Yeah, it took me a while. I had to burn some bridges with some toxic friendships. And that was hard. But, oh, my God, my life is so much better after because you don't need those people. [00:04:23] Speaker C: So true. And have you found when you were dating that some people weren't as supportive or didn't really get it? [00:04:30] Speaker A: I mean, it's a little weird. You know, there's other. There's some other things I had to explain too, because I have sexsomnia on top of the narcolepsy. So that's something I always had to explain. To people before we got to that stage. But also sometimes it's just people don't understand because you can't see it. So unless I'm having a cataplexy every day, some people just. It's in the back of their minds and they almost forget that I have it until, you know, they hear me talking out on stage or, you know, see me have an incident or episodes. A lot of times they just kind of just forgot and they don't realize. Yeah, it's hard for me to wake up or I might, you know, oversleep on my nap. And that's hard. And I've had people that definitely didn't have the level of empathy or maturity about it that my current boyfriend has. And also some ones that we just weren't great for each other. We used to argue so much with an ex back and forth that I'd be in an argument, I'd get so mad that I'd have a cataplexy. Sometimes he'd catch me, but sometimes he. [00:05:26] Speaker B: Would miss another illness. Just in case listeners and myself, I don't know what that was. [00:05:36] Speaker A: I didn't even know there was a name for this until a couple years ago. It is another sleep thing. It is where my body will initiate sexual relations in my sleep when I'm sleeping. Which I didn't know there was a name for this until I came across it in a narcolepsy online community. Now, it's. I don't think it's a symptom of narcolepsy, but they're not mutually exclusive. And it's never been with someone I hadn't slept with. It's always just been like, my body already knows that person. It's just. It's thing. And it's always been like, clearly I initiated it because I was on top, you know, like that sort of thing. And it's a weird state for both you and your partner to wake up in. So there are solutions for it. Basically. Clothing as barriers helps, but I've always been very upfront into talking to people and being like, okay, this is a thing I have. If you have a problem with it, you know, wear pajama pants to bed or something. Like, it's a very strange thing to have to tell people that you're dating. Yeah, sometimes I initiate sex in my sleep and sometimes they're like, oh, that's. I've never heard that before. That's interesting. But he'd be upset about it, oddly enough. Guess it's a good way to wake. [00:06:39] Speaker B: Up you can just imagine guys liking that, thinking, oh, yeah, that's so cool. [00:06:43] Speaker C: That's interesting. [00:06:45] Speaker A: Yeah, it is. And I think it's just, hey, like. [00:06:47] Speaker B: Once you have one sleeping disorder, you're very prone to get another. [00:06:51] Speaker A: Yes. [00:06:51] Speaker B: But you're my first person with narcolepsy that I've heard that has this combination. I haven't met this combination before. [00:06:58] Speaker A: Yeah. And I think because the type one, we have a lack of hypocretin, which Orexin, I guess depending on it, has two names. But because of that, I think that chemical regulates food, sleep, and arousal as well. So it does affect in some level our sexual desirability, too. So I always thought that was interesting because it's like, oh, like, could eat all day, sleep all day, and like, you know, like, found that it. Because of that. I feel like that's why there's more of that. I don't know. [00:07:29] Speaker C: And so just because I'm so curious about this. When you initiate sex or sexual relations, like, you would be asleep and then would you wake up at some point in that process or could you go through. [00:07:41] Speaker A: Okay, it wouldn't be an entire thing. No, I would wake up and be on top, partner inside me kind of thing. And it is started happening with my college boyfriend. And I didn't know that there was a name for it, but it's usually always been someone I was like, consistently dating. It wasn't like a. You know, and we both kind of woke up during that and it was just like, whoa, what's, what's happening? And of course you're in college. You're like, yeah, of course we're going to just keep doing it. Fine. And then it wasn't until during the pandemic that I even discovered that there was a word for it. So it's nice when there is the vocabulary for it, when you've got a word to explain it and then definition somewhere. It's not like, you're not the only one that experiences this. [00:08:20] Speaker C: Yeah, definitely. Okay, cool. Because I've seen on a documentary, I think it happened to someone else, but they were a guy. Which can, I guess, be more problematic because it could be seen as, like, more threatening if the other person who's a woman doesn't know the situation or. [00:08:36] Speaker B: Even if they do, you know, I. [00:08:38] Speaker A: Mean, really, I've just learned it's all about communication. Communication. Like, that's just when it comes to anything medically different about you, your partner, or whoever you choose to sleep with. Even if it's just like a friends with benefit situation or whatever. Like, just communicating. That has, like, made everything so much easier. [00:08:54] Speaker C: Yeah, definitely. Oh, well, thank you sharing. It's so interesting. [00:08:57] Speaker A: I'm sure. I am open book, great good person. [00:09:01] Speaker C: To have on a podcast to tell. [00:09:03] Speaker B: Us your age, your location, and the year you were diagnosed. [00:09:07] Speaker A: So I'm in the entertainment industry, so I don't disclose my exact age because it's super ageist and I'm fine. So I'm so sorry. I'm not like. [00:09:16] Speaker B: No, not at all. That's fine. [00:09:18] Speaker A: I'm like between late 20s and like early 30s, I'll say that. And. But it's a super ageist industry, so I don't disclose my age. But I was originally diagnosed when I was 15, almost 16, in Lowell, Kentucky, where I grew up. You guys might know from the Kentucky Derby, Bourbon and Muhammad Ali, that's what it's known for. It's in the middle of the country. I was misdiagnosed for several years. I started having symptoms when I was like, probably at the end of eighth grade, early freshman year, which is when you're. When I was 13, about to turn 14 is what I said. Two years of symptoms before I was properly diagnosed. And we went to loads of doctors trying to figure out what was wrong. And that was a tough time. And I was sleeping in, like, all my classes, and people were treating me like I was lazy, even though I was a great student. Like, up until that point, I had gotten anything lower than a B ever on, like, a grade. And so, like, it was a weird time. And my parents, always the type that are like, oh, we're gonna go see a doctor, because the doctor will have the answers. Doctors don't always have answers, especially pediatricians because they misdiagnosed narcolepsy. Like, I think something like 80 or 90%, like a really high percentage for pediatricians. And it wasn't until I had anaplexy in class that we decided to go to a neurologist because I had also had. And I want to mention this because I want to know if anybody else has had these too. When I was 7. And when I was 9, I had elementary seizures and they happened in my sleep. Probably haven't studies being done on this, but I had one seizure when I was seven, one when I was nine. I took medicine till I was 11. And because of that, when I had a cataplexy, my parents decided to see a neurologist, and he was the one that properly diagnosed me. [00:11:03] Speaker B: So at that point you had stopped taking the medication for the seizures. So did your parents think the seizures were back? Right. [00:11:10] Speaker A: They didn't think it was a seizure, but they thought that because I had a history of. That it could be related somehow. And. And I don't think they haven't done enough studies on it to prove whether or not that is related. But, yeah, so that was something that had happened. But because of that, they decided, oh, well, let's go to this other kind of doctor. And that's the thing. It's always the right kind of doctor you go to. And I was very lucky because I had a friend from middle school that I went to high school with, too. And her dad was a neurologist. So I had my cataplexy right before a test. I forgot the calculator you had to have in geometry. You know, the expensive calculators that make you buy. And so I went to go in front of the class to borrow one from the teacher. And, like, I heard someone say something, like, about, like a crush of mine or something, and it threw me off. And then I, like, had a full body cataplexy to the ground. And this was a new teacher. This is, like, her first year teaching. And she was like. She was, like, so freaked out. She's like, oh, my God, are you okay? You know, she's like, in front of me, like, snapping her fingers, trying to, like, wake me up. And she's like, you know, like, you know, what's the square root of, you know, 68? I'm like, I don't know that. And then I. And then I, you know, I wake up after a couple minutes. The thing is, I can hear some of this happening when I have a cataplexy. It's like a. Almost like a sleep paralysis where I can hear what's going on around me. And that's the reason I did decently in some of my classes. Cause I had sleep paralysis. I could hear the whole lesson. I couldn't see what was on the board, but I could hear the lesson. But I got up and I was like, oh, like, I'll take the test. She's like, no, no, no. Your parents have been called. They're going to pick you up. We're going to go to the office. Because we didn't have a nurse. We didn't have a nurse at our school. And it was spring break this next week. So during that week, my friend's dad was able to fit me in to see him as a neurologist. So I was very lucky because neurologists didn't take months to get a proper appointment. And I also want to say I was very lucky because I knew him already and so he believed everything I said was accurate. My symptoms and that happens with a lot of people with invisible disabilities when trying to get diagnosed. I did try to get diagnosed for two years before that I went to several different doctors. You know, I got tested for diabetes and hypoglycemia because I used to eat sugars to stay awake. You know, I'd eat something to stay awake. And I got tested for so many different things. They thought it was maybe ADD or it was depression and it was so many other things were terms were thrown out there and mono. I had mono when I was 10 and they thought it was like an extended case of mono. And I was like, well, that doesn't make sense because it was three years where I didn't have tiredness. And it's really interesting because it's just sometimes I think for med school in the US they get a very short amount of time that doctors that aren't specialized in it where they cover sleep disorders. It's a very short section. It's not long at all. [00:13:54] Speaker B: I think it's all around the world short. My friend's a surgeon. Well, she's a GP now, but she used to be a surgeon and she knew more about narcolepsy because she was my friend than everybody in her whole class. The sleep section was the most minute. [00:14:07] Speaker A: Yeah, yeah. But like I said, I consider myself super lucky that I was able to get diagnosed so early because most people, it can take them a decade or longer to get diagnosed from when symptoms started. So I was very lucky and it still took me two years. So I try to look at the positives of it, I guess. [00:14:34] Speaker C: And how did you feel when you were diagnosed? [00:14:36] Speaker A: Honestly, I was relieved. And that is because there are some other symptoms there because I was seeing and hearing things that weren't there. So I thought I was a little bit crazy. So I was like, as 15 year old girl, I've been hearing and seeing things that I knew weren't actually there. And I was thinking to myself, wow, I'm a crazy, but I'm smart so I can learn how to navigate the world in a certain way. So I was just trying to prepare myself as an adult if I was going to be a crazy person, how can I navigate the world, like be okay? I found it was, it was a symptom of narcolepsy and I was actually just relieved. I was like, oh, I'm not crazy. I Just, I just have narcolepsy. [00:15:11] Speaker C: We've heard that so much from so many different people. [00:15:14] Speaker B: Yeah, it does feel so much better though. I know it's a sad thing. Like I say this with empathy to anyone that's listening who has serious mental disorder or anything, but trust me, having narcolepsy makes me have great empathy for people who have schizophrenia. Because that feeling of when you're hearing something and then having to tell someone else who you know hasn't experienced this thing that you just heard or saw, there's no way to explain this to someone else who has not experienced it without them looking at you side eyed like you're crazy. There's just like no other way. They will think that something's up with you. It's either that or they don't believe you. There's no other way getting around it. So when you have another name for it, it's like, oh, okay, gosh, it's just narcolepsy, that's fine. Oh my gosh, thank God. Like I'm not losing my mind. [00:15:58] Speaker A: And that is the thing that I feared too. And that's why I've always than communicating with my partners who like I'm a comedian, I am pretty light hearted about things. But I say like the one thing never joke about is if I'm questioning reality. I need you to be honest with me because sometimes when I first wake up from a really intense dream, usually in my naps because I take a medication at night that helps regulate my night sleep. But when I wake up from my naps, sometimes I'll be very out of it. I'll be confused, I'll think I had a phone conversation that I didn't. Or when I used to live with roommates, I thought like a roommate had come home and we, we talked about a thing, but we didn't. And so sometimes I will have very realistic dreams and I'm not sure whether it's happened or not. And so that's another thing that is really important to me with the people I live with that I'm around. I'm like, hey, if I'm questioning reality for any reason, I need you to just be upfront. Don't, don't ever turn that into a joke. I could joke about almost everything. It's like the one thing don't make me think I'm crazy. Yeah. [00:16:56] Speaker C: Gaslighting. [00:16:58] Speaker A: But I agree about the empathy as well. Yeah, questioning your reality is just a scary thing. [00:17:03] Speaker C: What do your, your symptom look like now and what medications do you take to manage that. [00:17:08] Speaker A: The symptoms I have, I have excessive daytime sleepiness, destructive nighttime sleepiness, I have sleep paralysis, I have cataplexy. Like I said, full body. I think there's only been one or two times ever where it was just the face. Almost always it's when I'm standing and it's full body cataplexy like to the ground or into somebody's arms if they're nearby to catch me and well, probably more hypno, hypnopompic hallucinations more than hypnagogic. Usually when I first wake up is more likely when I'm going to have a hallucination. Before I was medicated it was very severe. I think before I was medicated at that height I was getting like between three to six cataplexy a day. This is before I was medicated and but my record is 8. But I am on a few different medications. So I take extended release of Vyvanse in the morning. It's like a 20 milligram Vyvanse in the morning and then after my nap in the afternoon I'll take a 10 milligram Ritalin or generic Ritalin, whatever. And then at night I take Xyrem. Xyrem was a medication that I know it's like stupid expensive but it is the one that has helped the most because that decreased my cataplexy cassette. I was having like three to six a day and now I have one every three weeks. So the level of difference for that made it possible for me to be able to go to college not close to my parents, to move to Chicago six hours away and then eventually moved to la and now I'm thousands of miles away from family. But it really allowed me to be able to do more. As much as I wish they would make it more affordable for everybody and they have like a prescription program, all that stuff they do with the insurance which I'm on. But it's still. I wish that's one thing is I, I know everyone probably complains about the NHS a lot but we would kill to have it here. We would kill to have that here. But yeah, so I, I've had these medications. It took me a while to find the right combo that worked for me and it took me a couple years cuz I was also a teenager dealing with hormones and they tried, they really tried to push medications on me at one point that didn't work. Like they tried to push, what's it called, like the new Vigil or Provigil or I forgot what. [00:19:17] Speaker B: Modafinil. [00:19:18] Speaker A: Yeah, they tried to push that on me when I was a teenager and that made me feel crazy. And then a couple years later, another doctor tried to push it on me again. And this is a doctor in Chicago. And she gave me a sample at the office, which they do in the US Sometimes. They give you a sample and then you refill your prescription at the pharmacy. So she gave it to me and didn't tell me that it affected my birth control. And it was the pharmacist that told me. What. Because I went to refill my birth control and that medication at the same time. So these can flip. And I was like, oh. And my doctor did not tell me that. And I was seeing somebody, my college boyfriend at the time. And so I stopped seeing that doctor immediately because that was ridiculous. And it had me really affect the trust I had in some doctors and whether they actually were trying to just push a drug. There have been rules in the US preventing, like, you know, the pharmaceutical companies from, like, bribing doctors to push their meds, but, like, they really didn't start getting regulated until, like, I think the last, like, next year. [00:20:15] Speaker B: Wow. [00:20:15] Speaker A: But there was a whole issue for a while where, like, med pharmaceutical companies would take a doctor out for, like, a nice dinner and give them a bunch of samples and be like, oh, we really want to push this drug. And ridiculous. Because I told her that it wasn't. And it also made me depressed again. So I. I've never been on that. But for a long time, doctors were telling me, oh, well, long term, that's not going to be good for you to be on these upper med, you know, these medications that are considered uppers. But more recent studies have come out, and if you started taking it before you were an adult, then it doesn't affect your heart negatively. Which I found out from my general doctor in la, who I love. He's the first general doctor I've ever had that had other patients that had narcolepsy. And he even took his class about sleeping disorders because he had. He has me as a patient. So it just. He told me that. Wow. Long answer to the question. [00:21:06] Speaker B: But no, not that. Like, he's taking a personal investment in his patients. Yeah. That's nice. [00:21:14] Speaker C: How much does Xyrem oil medication actually cost in the US Because I think people in the UK just like, won't have any concept really, of how much. [00:21:23] Speaker A: Yeah, well, first of all, they do a trick. They do this thing called a prescription delivery. Right. They do a thing where it's like they will charge the insurance company basically as much as the insurance company will pay. And then they, if you make under a certain amount of money, they make you Pay, you know, $35. So right now looking at it like out of pocket for one bottle and sometimes you need two bottles a month, it ends up being, I think right now it's saying like starting prices even on like a site like GoodRx is like 7800 and I am on a medium dose. So mine would be out of pocket about $15,000 a month, which is not, you know, feasible for most people. It's not feasible for me. So. So then what they do, because it's so astronomically high, they charge the insurance company, the insurance companies will maybe pay maybe 2, 000 of that. Right? And then they charge the customer 35, which makes it affordable. But also then the insurance is super expensive. My insurance is $900 a month just to like have my medication. And off top of that in the US you also have to pay for your medication and every time you see a doctor you have to have a copay. Every time I see my specialist I had to pay like 65. Every time I get my, my medication like Vyvanse or my Rinlan I have to pay co pays. My Vyvanse I think per month is like 65. My Rinolin I think's a bit cheaper, I think that's 35. But like so with medications and insurance like I'm spending over a thousand dollars a month just to stay awake and be like a normal person. So I think people in the UK don't quite understand like how, how messed up. I don't know if I can curse in here, but it would, I would use a curse if I was able to, but it's like that messed up. And this company has, they've had a monopoly on the medication. It's just about, I think this year it might start to go generic so they might finally have some competition where they might lower the cost. But it's really ridiculous. Xym used to be owned by a different company called Orphan Pharmaceuticals. And the idea was that they were organization trying to bring medications for rare disorders and they used to have it be a lot more affordable. And Xyrem has continually upped and upped and pharmaceuticality has like a 94% profit margin on their medications. It's like that much for the drug but it's super regulated because one of the main ingredients is ghb which is a date grape. Jug. So it is complicated because. And they've been studying it, I think since the 80s, you know, for, for a long time. But it didn't get approved till I think the early 2000s and did some online research and found out about it and so we had to drive to Cincinnati to go to that doctor that, to prescribe it because at the time there were like maybe 10 or 15 doctors in the whole of the US that would prescribe it. [00:24:04] Speaker B: Wow. [00:24:05] Speaker A: But it's. And some people are afraid to take it, some people are afraid to take it or scared to take it. And I was just looking for, I was like, hey, I'll try anything. Do either of you take that medication or. [00:24:17] Speaker B: Yeah, yeah, both of us. [00:24:18] Speaker A: I mean it was a life changing medication for me and, you know, I wish that they didn't, you know, make such a profit on us, but does it cost money in the UK or is it free in the uk? [00:24:30] Speaker B: Yeah, it's free for us because we have the nhs. So yeah, now it's probably easier to get on it, but I, I've only been on it just before COVID So 2019, I finally got on it and it's been around for ages. But they weren't just like giving it out to. Everybody had to like, had tried like every drug in the system and it was just like the last one that they'd give you if you tried every single thing. People who got narcolepsy through the vaccination, like Liz, those people, yeah, she. Those people got given Xyrem straight away. But those of us who had it before who didn't get it because the government basically injected people and gave them narcolepsy. So those people in that cross action suit or whatever they, or I said, I guess the government maybe felt guilty so they felt they had to fix the problem. And everywhere else it was more like what we call like a postal lottery system. Like depending where you live, you might have. The doctor might have had, I don't know, more scope on how much expensive medication he could give out. And so those people might have got. If they lived in a certain area and if you lived in a different area, you might not have been able to get on the list or it. [00:25:37] Speaker A: Just takes a while to. How long were you on the list to get it? [00:25:41] Speaker B: Yes, absolutely. I started my scissors at 15. I was diagnosed when I was 19 and I didn't get on it until the other day. And I'm 41. Yeah, I just got on it in 2019. It's like the last drug that I hadn't taken. I've taken everything else. And at that point I was. My cat pictures had got worse and I was falling all the time on the street and stuff. And my sisters were like, oh, we're going to have to wrap Kaylee in bubble wrap every time she leaves the house. Cause I was like, just having accidents all the time. [00:26:09] Speaker A: At one point I was. They thought about getting me a helmet, like. Like somebody that has seizures as well, because, like, just to prevent that. But that's. That's tough. I'm really glad that you got on it. [00:26:19] Speaker B: Um, yeah. So that helped my cat Pepsi, like, tremendously. Like, I still have cataplexy every day, but now I don't fall. Yeah, I don't fall anymore. Like, if I fall. This very rare situation. Yeah. [00:26:30] Speaker A: Yeah. It's interesting how it shows in different people. You know, I've talked to some people, but not that many people that also have cataplexy. I think most of people with narcolepsy that I know have more of the excessive daytime sleepiness and not the severity of cataplexy that, you know, I had experienced. So it's, like I said, a different experience. And it's. It can be scary because you. You're not sure what you feel comfortable doing. For me, the only reason I felt comfortable driving is because my cataplexy always happens when I stand, when I'm standing and I always have like a full body hexy. So it's never really. I think it's happened maybe twice or three times ever when I've been sitting. That's it. Which is. I don't know why bodies are weird, but yeah, it's great that they cover it. I mean, I can't believe that it's free. Like, that's amazing. But yeah, the lottery system, that is. That's tough. [00:27:17] Speaker C: I think I had to go to because I, like Carolee said I was one of the. The swine flu babies. So I got it when I was 14 through the vaccine. And even though that was the case when I was living up north in Manchester, I couldn't access the medications. And I think I got moved around to like three different trust. And it was only when I moved to London, when I started working that I could actually get the medication, but it took like years. So I started my job without having really, like, adequate medication and was struggling so bad, but then eventually got it. So, yeah. [00:27:52] Speaker A: Yeah. I don't know how I could have done. And do you also take medicine to stay awake during the day? [00:27:57] Speaker C: Yeah. So I take. I've just started a new medication called Zin, which is also known as Wick. [00:28:03] Speaker A: It. [00:28:03] Speaker C: It works on the kind of histamine pattern process in the brain. [00:28:08] Speaker B: I just. I just recently started taking. I'm still waiting for it to kick in. I'm now on seven tablets a day, and I feel no different. But I am putting this down to the fact that I have five sleeping disorders, not one. And so I'm just thinking that maybe this is the case. Why? Because this is the only medication I haven't taken yet. I've taken everything else. If this doesn't work, I have nothing else to take because they really took me off Ritalin because it started affecting my heart. So they took me off that. So now I'm just, like, hoping, you know, he said to go up to eight tablets and I'm on seven. So next week I'm up to eight. And so I'm just hoping that when I hit eight, it's just magically going to start working. This is my hope. [00:28:45] Speaker A: Sometimes it takes a while. When I was trying to figure out the right combo of medicines, I think they'd have me on a medication for, you know, about six weeks, you know, to two months sometimes, to figure out if it worked. You know, for some reason. For me, what works, what has worked best are the. Like, I changed a little bit. I used to take focal and extended release. And then after, oddly enough, after the 2016 election, I started getting a lot more stressed. And after that, that election happened. And so I switched to Vyvanse after that because I think it was just. I don't know why. The medication was just making me more irritable and, you know, like, heightened. So I. I just switched. I still kept the rhythm, but I. I switched to the Vyvanse and that. That seems to have worked. But, I mean, our bodies change over time, too, and some. Some days are hard. Sometimes I have to take two different Ritalin pills at night, in the evening, to stay up a little bit later or something. I think my thing is I'm always afraid I'm gonna, like. I'm afraid, like, pharmacy won't have it because we've had shortages in the US and it's like I'm worried about running out of medication. [00:29:47] Speaker C: Oh, can you tell us a bit about how you got into comedy and doing your podcast as well? [00:29:58] Speaker A: Oh, of course, yes. So I. Well, I was a theater major in college and I went to school outside Chicago. And, you know, it was a very serious theater school. It was like a Meisner School, and I actually went over and I did Bonnet in Oxford as a study abroad over outside of London. And then it was very serious school. So I started going to Chicago on the one day off on like the Sundays and go do comedy improv classes. So as like a different way to relax and do something different. So I was doing improv, and then I did sketch. I did I.O. and Second City Conservatory and annoyance. They have all these theaters there. And then I moved to Chicago after I graduated, and then I just kind of threw myself into improv and sketch. And then shortly after that, I started Stand up because I didn't want it. To worry about coordinating eight people's schedules just to perform comedy. And I never thought. I just decided to try it. One night I had seeing Stand up, and I was like, no, like, I like doing characters, like doing improv and all this other stuff. And one day I was just like, you know what? Like, let me just try it. You know, I'll just try it. And I really liked it. I liked it a lot more than I thought. And I had met a couple women at my first open mic that talked to me afterwards and were like, oh, you should definitely keep doing it. You know, like, they encouraged me. It was a January night. I just, like, Googled, like, closest open mic to me. I walked in, like, the very cold weather. Chicago was like 30 degrees. It was probably, well, I don't know what, below freezing. So zero Celsius. I don't know how it. I'm sorry, I don't know the conversion rate of it. It was basically very cold. It's like at least two levels of pants weather, you know. And so I walked a couple walks to a mic and went to it, liked it more than I thought, and just started throwing myself into the scene there. And about a couple months in, another friend I made, I. I started making friends in that scene. And somebody that, oh, you got narcolepsy. Like, you need to talk about that on stage. And it was something that hadn't occurred to me because it was. So then I went through different stages of my life where sometimes I kept it secret and only close friends knew or someone I dated knew because I didn't want to, you know, be judged on it. And then I was like, you know what? You know, I should. And it started working really well. I started writing jokes about it, and then it was such a positive response. It wasn't, oh, I feel sorry for you. It's, oh, wow, that's really interesting. Like, I want to know more about that, what's that like? And it was great to be able to find a way to take this thing that, you know, has been a level of a burden in my life and make light of it. Not now. I don't make light of it. Like it's not narcolepsy. I'm not making fun of people, I'm making fun of the situations that happen or the, the people that don't understand it, you know, and the silly questions I get asked all the time, you know, like, can you just fall asleep right now for me? And like, like ridiculous stuff like that. And I, you know, turning that around and having a room filled with laughter and entertaining people from that was just a really great way. And I started being way more open about the narcolepsy. And honestly that is how I fully came to accept it first for myself. That's where I really came to my self acceptance was through sharing it through comedy. You know, I say comedy is therapy. No, I'm just kidding. Please go see a therapist. If you need to see a therapist. Don't just Mike. [00:33:08] Speaker B: It's not the same when you say that. That's. There's the show, I can't remember the name of it now. Mrs. She's Jewish and she has on Netflix. I think she's Jimmy. And then her husband says he wants a divorce or something and he's moving out, he's met another woman. And then she just goes to a bar and there's a comedy thing and she just starts speaking the Margaret Basil. That's it. That's it. Yeah. [00:33:34] Speaker A: I mean, and like I said, it's not easy, but I, I think I tried to find ways to talk about it to make it a little bit more relatable. And, and so I've been building my narcolepsy material for years. And then during the pandemic, I started to write a solo show, an hour long solo show from all the material. Because while standup is great, I love standup, I will always do standup. To be able to go deeper on a topic like narcolepsy, you don't have the time. And stand up for every 45 seconds you're talking, you should get 15 seconds of laughter, right? There's like a time thing. So with a solo show you have a little bit more freedom to maybe take a couple minutes and be a bit more serious for a few minutes to make a deeper point, you know, about asking for empathy or that. So I kind of built this show and wrote that. And then I got a director, my Director Josh Sobel was amazing. And then I took it to the Edinburgh Fringe for 2023 and premiered it there. Never been Fringe before. This is my first Fringe, and. And now I. Then I've done it a couple times in the US I'm looking at doing some small runs and then hopefully doing it at colleges as well. Kind of like it's a little bit of edutainment, so it is a comedy show throughout. But I'm also educating on narcolepsy and the major symptoms I experience so people can come out of it laughing. But also having learned and hopefully having more understanding with people with invisible disabilities and all the things that we go through. [00:34:53] Speaker C: Wow, that's amazing. And such a cool way to spread awareness of narcolepsy as well and have a really good impact. [00:35:00] Speaker A: Yeah, it's. I think it's important. And it's not just about necklace. Like I said, so many people have disabilities that you can't tell by looking at the person. And, like, I think people just need to have a little bit more empathy, understanding. Like, I used to feel embarrassed to on the train, you know, in Chicago to, like, ask someone to get up from a seat so I could sit down and, you know, because, you know, what if they don't? And, like, I don't look like there's anything wrong with me, you know, And I wish I had the confidence and, you know, the ability now I have, like, the words I would say now and the ability now to say speak up for myself. But at the time, I think I still felt bad because I didn't look like there was anything wrong with me. And it took a while and some therapy to get a test that in myself. [00:35:44] Speaker B: Would you. Would you ask. [00:35:45] Speaker A: Now, LA does not have the best transit system, so we. There will be a train nearby in about a year and a half, I think. But now I would say, hey, like, can I please sit down? I have a sleeping disorder and I need to. There were many a times when I would fall asleep standing up on the train. [00:36:05] Speaker B: Yeah, that's so normal. I've worn a medical necklace, like, forever. And then recently they made the lan. And then I made my own lanyard and I wore that for a while. Narcissi Naps for Life lanyard. And then they made the flower lanyards for all the hidden disabilities. Yeah. So now it's like you can type in sunflower lanyard on Google and then it takes you and it's got. I think it has probably almost every country in the world on the. Maybe not Every country, but most of the countries in the world, it's on there. And you can. They're all associated with it now. And then you get. One second, I'll get it. [00:36:42] Speaker A: Awesome. I. I had a necklace for a little bit that did that for when I was riding on the train, but that's awesome. [00:36:48] Speaker B: So now I have this. [00:36:49] Speaker A: Ah. [00:36:50] Speaker B: And then first they used to sell them, like at supermarkets. Like, I don't know if you have. [00:36:54] Speaker A: I've never seen before. [00:36:56] Speaker B: Yeah, like they said, just give this part out. The top part. Yeah, just came out. And then someone decided to add the extra part to it where you can have your picture. And then on the other side, it just has the flower, the sunflower, and it says hidden disability. But now you can have your picture and you can put your disability. Disability is. So mine says, like narcolepsy type 1. And then it says, please contact. And then it has my contact person details on it. So that would have been on the other side of my necklace, that. But here it's just on there. And then you can pick, like different things. Like it says, like it shows like a little man saying that you're slow when you're walking or. And like it has a seat. [00:37:32] Speaker A: Sits. [00:37:32] Speaker B: Person sitting down. You need to sit down. And a little clock thing that maybe you might be walking slow. Like, stuff like that. [00:37:39] Speaker A: That's so great. No, I haven't seen this before. I don't know if this is. Yeah, I've never seen. Is this a thing throughout Europe as well, or is it just a UK thing? [00:37:49] Speaker B: No, all over the world. You could. It's. When I went on the other day, I saw other countries. You could choose the country that you lived in. Cook. Yeah, I love that. [00:37:59] Speaker A: I think that's so great because then it's something you can just slip on if you're worried about being in public when you're walking alone or whatever. [00:38:05] Speaker B: And which is quite good because most of the people in transit, they know this. Now, maybe the public doesn't know it as much, but I've been on the train where I was like, going to do something and then one of the attendees was like, you can just give me a seat and you can go back and sit down. Give me a seat number and I'll just bring the food to you. And I was like, oh, I'm okay. And she's like. She goes, I'm on the oxen because you're wearing the lanyards. So I know that something. You have something. So if you didn't want to Stand and wait. You could just give me the number of your seat and I'd bring it to you. And I was like, oh, my gosh, it's working. Because I know. I wish the public could understand it more because sometimes I want to ask for a seat and people just look at me and they, whatever. But, like, where I don't feel bad is if I'm wearing it and then I sit on the disabled seat and then people are staring at me and then someone else comes in that's old or whatever. And if I'm really tired, I don't feel any way. Like I don't get up. Even when I had my necklace one, I wouldn't. And I could see, like, old people or other people looking at me, speaking and saying, whatever. And I was like, say whatever. You just need to say something to me. But then I would just say to you, I have a hidden disability. I have narcolepsy. And I'm very exhausted right now and I'm not getting up, like, at the back. So go to the back. This is where I'm sitting. [00:39:15] Speaker A: But can I tell you one of the reasons I also love the uk? When I went to London last year, I saw that in the transit in the tube, there was a big ad that said, like, not every disability is visible. And they had like a whole campaign about. And I, you know, I thought that was amazing because it just. People don't realize that. And so many millions of people have invisible disabilities and people that still don't know exactly what's wrong with them. But it is so important to have stuff like that. And I really appreciate that you shared that they had this. Now that's awesome. [00:39:44] Speaker B: Yeah, and I'm glad that it's that worldwide now. So anyone just like, go on Sunflower Lanyards, you know, dot com and find your country and get your landlord sent to you. And it's not very. It's not expensive. It's like under $10. So it's very affordable. It's much, much cheaper than if you got a necklace. If you get a necklace, you know, imprinted and everything's on and that. [00:40:05] Speaker A: They also talk about the mental fogginess because I feel like most places haven't mentioned as much the brain fog, you know, but, like, that can happen, too. I love that they go through each of the symptoms and everything. That's fantastic. [00:40:22] Speaker C: Can you tell us a bit about your podcast as well? Because I had a little listen to it earlier. Only five or 10 minutes. It sounds so interesting. [00:40:29] Speaker B: I want to ask what Was how did you come up with the concept of being in bed? Because that's how I found you originally. And I was just like, why did I. Because I did a podcast course in order to start this podcast. And one of the part of the course they're saying you have to look for people in a similar niche to you to see what they're doing. That's how I stumbled on you. And I thought, this is so clever. I was like, oh my gosh, this is like the best idea ever. Do it in from the bed. [00:40:55] Speaker A: It's like, well, as a. So I originally started just an audio podcast back when I lived in Chicago and I had. Marc Maron had inspired me a little bit. So Mark Marin is a comedian and he had a podcast, has a podcast called wtf. And when he first started the podcast, he had gone through a part of depression and had been a little suicidal and he thought about almost killing himself in the garage. And so he later decided to take that space and turn it into something positive and he started doing his podcast from his garage. Now, I didn't try to kill myself in my bed, let's be clear. But I did feel like the bed was a place where I felt a weird feeling about. It was like, I feel like I've wasted so much time in bed today, you know, this day or so I was trying to find something to do productive in the bed. Not that productive things have not happened in that bed. But I decided I was like, well, you know, let's, you know. And I joked about it with a roommate and it was just like, just do it, you know, like, just do, do the podcast. My roommate Emily at the time was like, you should just make it a podcast. And so I did. And I was surprised at how many people were fine just jumping in bed with me. I. I originally did it from my own bed, you know, in my apartment. And then. And then I did it and I moved to LA a little bit and then the pandemic happened. So try to do some remote. It didn't work. Concept didn't work as well remotely. Since the pandemic, I did like relaunch it as the video podcast. And that's been going well. It's called Sleeping with Sarah, which I also love the alliteration, but yeah, because I feel like a lot of creative people have sleep issues or sleep disorders. So I usually ask people if they have any of that. So we talk about a mix of like if they have a sleeping disorder, we talk about that a little bit and. Or weird dreams. And that sort of stuff. But then we also talk about, you know, if they do comedy, you talk about comedy. Sometimes we. You're off into employ different topics like ghosts and, you know, cults or whatever else. But we talk about, you know, sleep comedy, relationships, that sort of thing. And it's been a really fun podcast and it's a good way for me to share a little bit more about the narcolepsy and awareness to that and also learn about other sleeping disorders. I've people on that have circadian rhythm disorder. I've had people on that, you know, have had issues where they like, punch somebody in their sleep by accident. Things like that. [00:43:07] Speaker B: REM behavioral disorder. That's that one. That's what that one's called. I have that. Yeah. [00:43:12] Speaker A: And so it's really good to, to be able to share it. And it's been fun because I'm getting these great comedians that are talented and fun to be in. And we just get in bed together, put on pajamas and record the podcast. So it's. It's a good time. [00:43:25] Speaker C: Amazing. [00:43:27] Speaker A: And It's. It's on YouTube for the video aspect. It's YouTube, the backslash linking Westera. And then we have sleeping with Sarah Pod on Instagram and sitting with Sarah on TikTok. So got all those things. But yes, please follow because that helps and subscribe and all that. And then. But that's a. It's been a fun, fun way to bring more awareness to it and kind of just get to know more people in a fun, intimate way. And comfortable. It's comfortable. It's a good way. It's a nice, comfy podcast. [00:43:57] Speaker C: Nice. Lying in bed in your pajamas. Sounds great. And have you found it cathartic, a tool for yourself doing that podcast and interacting with lots of people who have sleep disorders or just talking about sleep and then also getting a chance to talk about narcolepsy as well. [00:44:12] Speaker A: Yeah, absolutely. It's a good way to also relate to a person. Be like, oh, wow. Yeah. I always, I always start the podcast by asking like, how'd you sleep last night? Talking about that. Sometimes people are like, oh, I slept great. And some people were like, I slept horrible. Like, this is what happened. I had this crazy dream. I couldn't go back to sleep. And just. And also just kind of even the playing field because like, some days we have good days, sometimes we have bad days. Just kind of how you guys start asking about how your week is, you know, and sharing how you've experienced that. And it's just a good Way to segue in. And like I said, sometimes we talk about sleep almost the whole podcast, and sometimes we talk about it for five minutes or a couple minutes. But I think it's just important because sleep is so important to life in general. And, yeah, it's a good way to share what's. What's going on or what. What has been happening. And with the comedy, it's just really good to share my experience and be able to get something positive out of that. Not just educating people, but having people laugh about it. Anytime I do a show with, like, a hundred people at. Or something, at least one person will come up to me after the show and say, like, oh, I know someone that has narcolepsy, or I have narcolepsy. And it's just really nice to build more of a community. And, you know, so it's. It's really important to me, which is why I did, you know, the solo show. And I would love for that to, you know, eventually maybe be like my first special after I toured a little bit. So that's the big goal for that, is to get it on a platform that reaches a lot. Lot of people. [00:45:32] Speaker C: Amazing. [00:45:33] Speaker B: Yeah. I hope you do get reached that goal. It's brilliant. It's. It's brilliant. It's really creative. I love it. And as people with narcolepsy, we know we've tapped into that creative part of our brain is more turned on than other people's. And it's nice that sleep be more normalized in conversation, because with this rat race that we're living in and living on, it's so easy for people to push and say, oh, sleep's not important. You know, you just got to work harder, keep pushing. But sleep is fundamental to living. Just drinking water and eating food. That's how important it is. And we've got to get that message out there. So people respect sleep. I think that's so important. [00:46:15] Speaker A: Totally agree. I think that's really important. So. And I think that this is really great to be able to talk to other people with narcolepsy and, like, just connect, because I. I don't think people understand how rare it is. It's not as easy to meet people that have it, or if you do, like, unless the sunflower lanyard thing, you know, it's hard to know if somebody has it, or also some people might be keeping it a secret for some reason, but sharing it. And I love it when somebody shares it with me because it's just a nice way to make people feel less Alone, too, which I think is important because this can feel. You can feel a little lonely, you can feel a little lost. And it's just so important to have that community like that. So I think this is a really great one to do, too. [00:46:53] Speaker C: I think the other nice thing as well about having your show is that, for one, the jokes about narcolepsy are written by someone with narcissism. [00:47:02] Speaker A: Yes, yes. [00:47:03] Speaker C: And they're actually, like, factually accurate as well, instead of being this, like, crazy portrayal that people just, like, drop to the forest flawlessly, which just doesn't really happen. [00:47:14] Speaker A: Yeah, yeah. I mean, I do. Yeah, yeah. There's. There's a process. There's like a motion that happens. It's not like you just suddenly drop down or fall backwards. And. And, yeah, I think that's, you know, that is important to me. And it's. And it's also for anyone that has narcolepsy, if you do ever see my show, which is called Awaken Narcoleptic, it's also the only show that you should feel very comfortable. If you laugh so hard you have a cataplexy, I will not call you out. I will not say anything about it. I will let you just be. Because that's the way it is, you know, So I also want to encourage people because I understand the. The hesitation sometimes to go to comedy if you have narcolepsy, because if you do laugh so hard, you might have a cataplexy. And for me, I'll take it as a compliment. It's not. You know, I will never make anybody feel bad for falling asleep during the show, especially if it's, you know, as a reaction to a joke. [00:48:01] Speaker B: So my sister has been taken to me to a lot of comedy shows of recent, like, the last two years. And I went to one, this American lady. I can't remember her name, but she. Yeah, I have a book of hers that. Anyway, she. I love so much that I was just, like, praying in my head, oh, my God, will she just stop telling the jokes now? Because I had had so many caterpillar back to back to back that I just couldn't come out of it. And I was just like, oh, my God, would she just shut up now? Like, not jokes. Like, we were sitting close to the front. I was thinking, oh, my God, soon we're going to be noticed. And then this is going to be awful. But thank God we never got noticed. [00:48:37] Speaker A: So. And I think I do some things to try to prevent that from going to comedy. I try to, like, do like a reverse acting exercise. Sometimes if I'm going to see comedy, I'll like, do this thing where you add layers of an onion to yourself because then you. You peel the layers and you make yourself more vulnerable. So I try to do some weird mental gymnastic before I go to a show sometimes, but. But it's. Yeah, it's hard, but I definitely. I've definitely seen some, like, I've seen a couple comedic plays and comedy where I did. To have category in my seat. That was one of the few times that was in my seat. But that was. That was when I was a teenager still, so that was a while ago. But that, like I said, it's hard, but I think, like, it's still important for you to enjoy the show and not worry about, you know, I think it's better because I. I feel like most people wouldn't call that out, you know, And I think it's. I think it's important to just allow yourself to enjoy the thing you want to enjoy. And I think it's great that you're going to see a lot of comedy because you should. You should be able to enjoy comedy. [00:49:35] Speaker B: Comedy is my. It's the genre I like the most. So I think it's just like, very unfortunate that nocturne tries to come and steal it away. Like, I remember as a teenager, yeah, I must have been 19 or probably going 20 at the time. I was going to the gym and I love Friends and I used to watch Friends and I know that I was going to laugh and I just would watch it anyway. I remember one time I was at the gym, I was watching it and I laughed. I had a cataplexy. I was on the treadmill and it threw me back and I threw. I went into the cross machine at the back. And then all I remember is seeing the lady's eyes. Her eyes were like really big and. But I was fine. Like, I was laughing and then I was thrown back, but I didn't feel like hurt or anything. It was just like a bit of a shock because it was like it happened so quickly and then everyone was like fussing and I was just like, okay, I'm fine. And then the guy showed me that I was supposed to. I didn't know this. It has this little clip on the. On the, on the machine. There's a clip that you supposed to clip onto your body or something so that if you stop moving on the machine, it. And then the machine stops. But I didn't know what that clip was for. I Don't remember them showing me this in orientation of the gym that you clip yourself. So I used to see people do it, but I was just. I didn't know what it was for and so I didn't bother to ask anybody why they were all clipping themselves when they got on the machine for. It was nothing. Yeah. So after that I cooked myself because. Yeah, that one, he was like traumatized with the whole thing. By the whole thing. [00:50:59] Speaker A: Well, I'm glad you're okay. I. Yeah, I didn't know that because I hate running, so I can't. [00:51:05] Speaker B: I can't run either, but I was just walking. I just used to walk on the treadmill really fast, not run. So. [00:51:10] Speaker A: Yeah. [00:51:14] Speaker C: Can I ask a silly cataplexy question? Because my cataplexy is not as severe, so I'm kind of more affected by the daytime sleepiness and my catholics is more like in my face or I have occasionally fallen to the floor, but it's quite rare, especially with medication. So when you get cataplexy, does it make you then fall into a sleep attack? [00:51:34] Speaker A: I wouldn't. I say it's more so for me. It's more like I can feel it happening but I can't stop it. And anyone that has seen me have a cataplexy can like see it, that it's about to happen. Based on my experience. Expression. I don't know how to explain exactly, but I feel it in my knees first. I almost like bounce up and down a couple times and then I collapse. But my body knows it's going to happen. So the way I collapse is usually in like a safe way, kind of like a. The best way to describe it, I think is like. I think I read somebody described, like it's a marionette puppet. When you cut the strings off, it's like I. I collapse, but I kind of bounce a couple times before I collapse. And as long as there's nothing in the way that I can hit my head on, I usually fall in a safe way. And there's one time I was like actually running to a show because we were late with a friend of mine and she said something and it made me laugh and I. And I started to have a cataplexy, but it was right by a fence that had like a spiky thing on it and she was worried I was going to like hit my head so she was able to catch me. But. But yeah, usually I. I feel it coming on, am unable to vocalize it before it. And I'm always usually Just out in my brain for, like, a few seconds. The most it's been out is, like, I think, like, two minutes the longest. But I can usually hear what's going on around me before I fully can. Can wake up. More recently, the longest one I had, I went to Disneyland, and I was very excited about riding the Guardians of the Galaxy ride, which is, like the drop ride, like the Tower of Terror. And we were right at the front of the line. I was, like, so excited to go on the ride that I had a full cataplexy. And my boyfriend had to explain to the people that, no, she's safe to go on the ride. Let her go with the next one. [00:53:06] Speaker B: Because they're like, no, no, no. [00:53:08] Speaker A: They let me. They let me. They let me go. But sure, it made some people nervous, but I'm very excited and happy. And that's the thing that's hard. It's like, we want to be able to feel good emotion. You know, we want to feel emotions. But when we reach. When I reach, like, a certain heightened emotion, whether it's a good emotion or a bad emotion, if it's like. If I feel too much, it's like, oh, we're gonna monitor that. We're gonna bring that down, and you're gonna have a cataplexy. But I'd rather. I'd rather go for it and not hold back my joy and not have a cataplexy. [00:53:37] Speaker C: Yeah, totally. You want to feel all those emotions and not have to control it, like you say. [00:53:43] Speaker A: But there are some people I've known for years that still have never seen me do it. It's just. And there are some people I had just met that see me have one. You know, the nice thing is I'm so open about it now. I don't hide it anymore. So people kind of get it. And if people see my show, they really get it. And so it's. It's just a great thing because I feel really comfortable now, like, no matter where I. You know. And although I do notice that it happens more often, the more stressed I am. And. And I think that's with a lot of things, like, symptoms get worse. The more stressed you are, the more pressure you put on yourself. So I've been trying to do better with, like, you know, intentions and therapy and, you know, meditation. Although meditation can be hard because I can fall asleep while I'm meditating, too. But, like, yeah, that's kind of. For me, that's where that happens. For. For you. Do you feel it more in your Face first or. [00:54:32] Speaker C: Yeah, definitely say, like, wait, were you asking me or carrying? [00:54:35] Speaker A: Oh, I was asking you, but I'd also love to hear. Also has to say. Yeah, I love that. Yeah. [00:54:40] Speaker B: Yeah. [00:54:40] Speaker C: So I feel it in my. When I'm not taking medication, I sort of feel it in my face. So it particularly happens, like, if I'm trying to tell a joke. So I wouldn't make a very good comedian, I don't think. And then I would get it in my knee and sometimes, yeah, I would, like, totally fall to the ground, but I would never look, like, properly out of it. [00:55:00] Speaker A: Like, I would still be kind of. [00:55:02] Speaker B: Like moving around a little bit, like. [00:55:04] Speaker C: A little drunk sloth or something. Yeah. But how about you, Carolee? [00:55:07] Speaker B: No, I get everything. So, like, in my face, I feel it usually first in my face and my leg. And then if I'm going to have a complete, complete collapse, it just. It usually happens quite quick and it just happens. But now on the Zuram, usually I'm just having face. Upper body ones mostly. And then occasionally I have the full collapse. So I have. Some people have a personal trigger. Like, laughter is my highest trigger, and then stress and then lack of sleep. But some people have a person trigger. Do you have a person trigger? Like, so my sister, one of my sisters, she's a person trigger. So if I'm around her, she triggers it. She's really. She's very funny. And sometimes when she's not even told the joke properly, like, I remember not. So at Christmas, she. I think a little bit before Christmas even, I went over and then she must have did something. I just went like this. She didn't even, like, get into the joke properly. And I collapsed. [00:55:58] Speaker A: Wow. [00:55:58] Speaker B: Yeah. My mom was like, saying, oh, dad, don't trigger Kelly when she's near the stairs. What's wrong with you? Like, like, things like that. But she triggers them like. Like that. And she's the only person. [00:56:09] Speaker A: I don't have a person, but sometimes a specific thing was. Sometimes it's a very specific trigger that I used to do, which is. This is odd because Liz reminded me of this. So for a while. You know that feeling when you say something out loud that's, like, funny, but you hold back your own laughter because you're not supposed to laugh at your own thing. That is a specific cataplexy trigger for me, which is why I don't do puns. Because if I do puns, like, I love a good pun. It's like, silly and nerdy, but that's the times, not when I'm on stage though. It's. It's kind of weird. It's like if you ever run on stage, if you ever performed in theater, like, which I have like all my life, you know, my body. I've also never sneezed on stage, you know, so I think your body, when you're on stage, you know you're being watched and your body kind of knows that. So. I've never had a kid of plexi on stage, which is strange. One time in Call in high school, I did play like, like a guard in the background of a play that was like I. I had a different, smaller part in a different scene, but I had to stand in the background of a play and be a guard and stand still. Definitely fell asleep standing up during that part. But so performing. I've never had a cataplexy while I was on stage. Knock on wood. But, but yeah, that specific trigger of saying something kind of nerdy, funny, but you hold back your own laughter, that has been a trigger for me in the past. But that's just when I myself have done it. [00:57:28] Speaker B: What about if like people around you, you've had a cataplexy attack? It's already happening. You can hear everything that's going on. They know that you've started to have it because it's actually happening. For me, I need everyone to go quiet now, absolute silence, so that I can come out of it. If people keep talking and, or fussing over you or like if you're in a place where you don't know people and they start to fast. Or if I'm around family and they continue the joke and it continues or whatever. Or if I'm in the cinema watching the movie and it's continuing and I just go deeper and deeper and deeper and deeper and deeper into it. [00:58:00] Speaker A: Well, it has happened where I've kind of had a couple back to back. Especially somebody like caught me, you know. So like I've had times when my partner caught me and like he said something else on top of that that was kind of funny. And so I kept like, kind of like I was like trying to get up and then like I kept bringing down, but I was like, I'll try to get up. And then like it brings me back. It's like I have like two or it's. For me it's more like I would. [00:58:22] Speaker B: Have like two multiple. [00:58:25] Speaker A: Like after that it's kind of like an aftershock of it, you know, so. So that's kind of how it works for me. And Almost, like, in recent memory, the ones that have happened like that have been when people caught me so I was already in somebody's arms. I wasn't down. So I'm trying to think. But for me, it doesn't matter if people are talking around me, because I. I really. In my mind, a lot of it. I try just to do some mental things. I'm like, I'm gonna wake up. I'm getting up. I'm waking myself up. Because I do that with my sleep paralysis. So in high school, especially when I was sleeping through almost a sitting in every class, and I didn't know what was wrong with me, but I used to have a sleep paralysis in every class. And I used to, like, be down on my desk like this, and I would try to. Could hear everything that was going on, but couldn't, like, wake up. So I'd mentally be like, lift your head. Lift your head. Lift your head. No, would be able to lift my head, but right when I got to lifting my head, I'd fall back down. [00:59:16] Speaker B: Yes. [00:59:17] Speaker A: I couldn't get out of it unless someone said my name or physically touched me. Those were the ways I was able to get it. Like, then when the bell rang, someone had to, like, touch me to wait for the teacher called on me. So a lot of times the teacher would be like, sarah, what's the answer to the question I just had? And I would know the answer because I could hear the question. And. And so it kind of threw my teachers for a loop because they thought they'd, like, embarrass me. And, you know, it's just like, oh, I just. But for me, it was. The thing that was harder to get out of was a sleep paralysis. Cause I would have those for 25 minutes in a class, or, you know, I think 40 minutes. And that, especially if there's a hallucination on top of that, it can be really scary. [00:59:54] Speaker B: Yeah. And very frustrating. I remember, like, it's funny that you say, like, keep your head. Put your head up. Put your head up. I remember saying to myself, okay, wiggle your toe. I think I saw this in a movie or something, and the lady had. She had been in a coma or something. And so she's like, wiggle your big toe. And it works. Like, I had to say this to myself for 25 minutes, but finally I was able to wiggle a toe. And it was after that that my body was able to get me out of the process. But it took a long time and, like, really strong and, like, repeating it over and over and over and over again. Very tiring. [01:00:25] Speaker A: It is. But I do believe in some mental power with that. So that is cool to hear that you've used that as well. So. Yes. To other people. Narcolepsy Listening to the podcast, if you feel like you're stuck in a sleep process, just try your mental thing. Just manifest what you want to do. If you're like, I want to wake up, I want to wake up, I want to get out of. And then maybe that will help. So ELL is all about manifesting. So a little bit. But yeah, I think that stuff helps like to be able to just like. Because if you can't get up, you know, for me it's just like being willfully. Even if I just shout it in my head, wake up, you know? [01:00:59] Speaker C: Yeah. What is your best narcolepsy joke that you have in your nose? [01:01:15] Speaker A: I mean, I have a few that I like. Let's see. One of the ones I like a lot because I get asked a lot of questions about narcolepsy. So the question I get asked the most is, oh, you've got narcolepsy. Does that mean you fall asleep during sex? Not any more than a regular girl. [01:01:27] Speaker C: Love that. I actually watched that on your Instagram when I was sat with my mum. [01:01:32] Speaker A: She was. [01:01:33] Speaker C: Looked very awkward. I thought it was very funny. [01:01:35] Speaker A: But yeah, and so that's one I like a lot. There's some other story ones. You know, it just. I think in the terms of the context it works better on stage always. You know, but it is a lot of fun. Yeah. So there's. Yeah, there's a bunch I do, you know, I have some about the cataplexy and explain is a real thing. You see it in movies. People fall down thought it cataplexy. It happens at a sudden shock or change of emotion. It really sucks because I've always wanted a surprise party. [01:02:02] Speaker B: Yeah. [01:02:03] Speaker A: No one surprise party. Because, you know, for me, surprise is also a thing. I. I actually once had somebody who. This is when I started telling people on a first date, it was like a second date and somebody came to to pick me up at my apartment building and like came out and like jumped out of the bushes to surprise me. And then I. Cataplexy. Yeah, but. But like I said, like that was just a thing that was at the time when I wasn't as open about it. So then I started being more open about it. So. [01:02:28] Speaker C: Yeah, I bet they felt so bad after that. [01:02:31] Speaker A: Yeah. But it's like for me, I pretty openly like I, I don't think, you know, any kind of joke, you know, offends me about it. Like, you can try to do a joke about narcolepsy, but my jokes are going to be better than yours, you know, like, in terms of like a right non narcoleptic person doing that, you know. And so it's like I, I never really find a fence to it. I think movies that included it, most of them were inaccurate, except for a couple like Twin Falls, Idaho or whatever. That one was fairly accurate. And, you know, a lot of them are inaccurate. But like, it doesn't bother me because at the very least people kind of get what it is because it's mentioned in a film, which I think helps. But. But yeah, like, I'm pretty, pretty chill about it. I don't think I get offended easily when it comes to jokes about it or anything. [01:03:18] Speaker C: It probably helps being a comedian that you have quite a thick skin in general because I imagine you might get like heckled and stuff at times. And you have to deal with banter from people and turn that into something that's actually funny. Instead of their, like, shitty comments or whatever. [01:03:33] Speaker A: Or some people after shows, like, not believing me, they're like, oh, did you just make that up for the joke? It's goodness that make, you know, yeah, making up for the joke. Then my life would be a whole lot easier if that were the case, you know, if I just made it up for the joke. But no, but I think that's another thing that, like I said, with the invisible disability, people don't see it sometimes. It's hard for them. Most of the time I just get weird questions afterwards. You know, like I said, that's where the sex question came from. And people feel like they are entitled to ask me very personal questions about myself. But like I said, if it's a bad enough question, it'll just end up as a joke. And then you're nutty. [01:04:08] Speaker B: Oh, isn't that the people that sleep with dead people? [01:04:10] Speaker A: Oh, I used to have a joke about that too. So, yes, for a while I've changed that joke. It's like, oh, I have narcolepsy. Not to be confused with necrophilia or. And I've changed that throughout the years. Sometimes it's nymphomadia, sometimes I say narcissism. Just substitute another word there. Because, yeah, I always find it funny. [01:04:28] Speaker B: When I've been asked that, because I'm thinking if I was that person. I don't think people who do that tell other people about that not introduce themselves and say, like, by the way, I have no, you know, I am a necrophilia. I don't think they want to keep that quite personal to themselves. [01:04:45] Speaker A: It's between them and their backyard. Right. [01:04:48] Speaker B: Come on. [01:04:49] Speaker C: What's the main misconception about narcolepsy that you would hope to change through your comedy? [01:04:55] Speaker A: Ooh, okay. I. I think that it's like, you know, let's see. Main misconception is just assuming it's all it. It's like sleep attacks are the same exact way because there's a difference between me being so tired that I can barely keep my eyes up and I have like a micro sleep or like something like that. And then, you know, versus a cataplexy versus that. It's not just one thing. There's lots of different ways I can fall asleep. I can fall asleep in a multitude of ways. It's a rainbow of ways to fall asleep. So it's not just one thing. And also the forgetfulness and the confusion, I think that affects me a lot. It is. I'm very bad with faces and names, which is not great for comedy. And I, in a especially, it might be like, I remember, you know, what you look like, but then you change your hair. And then I, you know, so for me, that is where I get. I think that having more empathy with that, like, understanding that I'm forgetful or, you know, not taking offense if it's. It's like, oh, I'm running five minutes late because, you know, went to the car and then I realized I forgot my keys and then I forgot my wallet. And I think the forgetfulness affects me a lot. And I think it's one that people don't talk about as much, the brain fog and how that can affect your daily life. Like, yes, I have medicine that. That keeps me awake, but then I, you know, have to try to schedule more time to do things. So. So that's. That's happens for me. So that's. That's kind of what I hope people have more empathy for. And that snatches that. Like, not everyone has cataplexy. I think it's like 40% or so have cataplexy. And so not everybody has this falling down thing, but, you know, just understanding it. [01:06:27] Speaker C: Yeah, definitely. And I. I think your show will really help to see that raise awareness. And I really hope you can do it in London at some point if you love to. [01:06:37] Speaker A: I'm looking at right now, I'm trying to look at some spaces in New York and Chicago, but I would love to go to London. So, yeah, we can Chuck R. If you got some good recommendations of places to do that. So, yeah, I'd love to. [01:06:54] Speaker C: So if you could press a red button and completely get rid of narcolepsy and cataplexy from your life and never have experienced it, would you do it? And why? [01:07:03] Speaker A: I've thought about this a lot, and it's been a thing that has been really hard for me. But I really like my life right now. And it took me a while to get to that point. Took me a while to have the strength to be able to talk about it and share it. And I'm not sure if I would just push a button and take it away, because I think it's made me stronger to have to overcome this. You know, I think from bringing awareness, talking about it on stage has made other people feel less alone and more understood. And I think that's really important. And I think, you know, I'm not sure if I would be a comedian without the narcolepsy, to be honest. I don't know. Like you said, a certain level of creativity, because we're in REM so much and because our brain works the way it is, there's a certain level of creativity. And I love that part of myself. And I'm. And I love my dreams. Like, you know, when I'm not taking Xyrem. Like, my dreams could last for, like, what feel like hours and days and a fascinating thing that's hard to explain to anybody else. Like, I experience the world different than 99% of the people out there and kind of love that. So I'm not sure if I. Not sure if I would, because I don't know where or who I would be without it. And I think right now it's taken a long time to get to this point. It's not an overnight thing. I think right now I've finally gotten to the point where I really feel comfortable talking about it. I'm really happy that I have this thing because I can share it and make people feel less alone. Well said question, by the way. That is. And I can totally understand why some people would also, you know, be like, you know, no, like, I want cheap insurance and, you know, all this other stuff. But. And it doesn't make anything easy. But I don't think anyone's life is easy. Otherwise it'd be kind of boring, right? [01:08:38] Speaker C: Yeah, definitely. Thank you so much. It's been great having you on the show today, and so interesting to hear about your your comedy and the raising the ways that you're spreading awareness as well. I think you're definitely going to go far and I will start listening to your podcast. I'm excited to make my way through all the episodes. [01:08:55] Speaker A: Please do. And also feel free to follow me on Instagram because that stuff matters in la. So it's just that they're all Britain is my personal Instagram. So awesome. So. But yeah, thank you so much and I'll keep tuning in for your show too. [01:09:10] Speaker B: Thank you. So Sarah, say your Instagram handle so. [01:09:13] Speaker A: Everyone can Sarah Albritton. So Sarah S A R A H A L B R I T T O N on Instagram. [01:09:21] Speaker B: You heard that here, everyone. So follow Sarah and. And when you're having those nights when you have those nightmares and stuff that we get, you know, just pop onto Sarah's podcast and have a laugh. [01:09:32] Speaker A: Yeah, it'll get you out. And also sleepysarah.com for shows and stuff. Sarah, show dates. [01:09:37] Speaker B: That's great. Thank you Sarah for coming on. We really appreciate you having you on. It was really interesting talking to you and hearing about your story. [01:09:44] Speaker A: Well, thank you so much for having me on. [01:09:46] Speaker B: That's all right. [01:09:48] Speaker C: Happy napping everyone. [01:09:49] Speaker B: My favorite views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life cic, which is a non profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our Polygon podcast and join our sleep disorder support group by visiting the website www.naps4life.com. If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email [email protected] you can also support us by donating at the website Happy Napping.