Episode Transcript
(0:09) Hello, welcome, you're listening to season one of Narcolepsy Navigators, brought to you by Naps (0:16) for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating (0:23) illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic (0:29) hypersomnia. I am Kerly Boger, the founder of Naps for Life Narcolepsy and welcome to our stories.
(0:38) Hello and welcome to the podcast episode with Kerli and Liz. Today we're going to be talking (0:45) about Kerlys journey with her narcolepsy. Hello Kerli.
Hi Liz, how are you? I'm good, (0:51) how are you doing? I'm good. Good. How was your Christmas break and how did you find it managing (0:57) narcolepsy and cataplexy over the festive period? Christmas was good, it was nice to be with family (1:03) and get a break from just being by yourself but this year I had many cataplexy attacks, (1:10) much more than usual and a lot of sleep attacks, much more than last year so that was very (1:17) interesting and I'm not sure why because usually it's my sister which is very funny that triggers (1:22) all my cataplexy but I was having more cataplexy not just for laughing but for other symptoms, (1:33) emotions? Yes, for other emotions which was very strange to me.
Yeah, interesting. And do you know (1:43) like what other emotions were causing it? Frustration, yeah. Often felt around family? (1:50) Yeah, frustration.
It was just so many and it wasn't that funny so. Yeah, your family aren't (1:57) that funny, shouldn't have had that many cataplexy. Yeah, my sister wasn't like ripping it like she (2:03) usually does so I don't know why I was having so many and just like we were watching Elf and then (2:12) I had a cataplexy that led into a sleep attack.
Oh no. That led into paralysis, yeah and then when (2:20) I came back, I don't even know how much of the film I saw because I was just like (2:25) going back into sleep attacks. It was very strange.
Yeah, I think a lot of people can relate that, (2:32) I mean I as well slept through a lot of Christmas films so I really saw the ending to many of those. (2:39) Okay, so you had a lot of sleep over Christmas. Yeah.
And I think we were saying, I was saying (2:46) to you earlier as well, I had a similar experience where I was napping probably twice as much as I (2:51) usually do when I'm working even though I was taking my medication so I don't know if it's (2:57) just something to do with being more in a more relaxed environment and yeah my body taking (3:04) advantage of the break or something. Yeah, maybe. Yeah, so yeah I can relate to that.
Like it almost (3:10) like the body knows that you don't have to go to college, you don't have to go to work so it's like (3:16) why not rest? Yeah, why not sleep through the whole day? It is frustrating at times though because (3:23) I find it difficult to work out if the naps are helping me or if actually sleeping that much is (3:28) making me more lethargic and more tired. Yeah, and I don't know the answer to that either. Yeah.
(3:34) It's hard to work out and it's so individual as well. My mum would probably say that it is (3:38) making me more sleepy, yeah, but I don't know. It's so hard to resist though when you're just (3:43) snuggled up under a blanket and you're watching a film and you feel that the sleep haze coming on (3:48) and you're like you know what I'm just gonna let it happen.
Yeah, there's no need to fight it. Exactly. (3:59) So can you tell us a bit more about your journey with narcolepsy? So when I was 15 years old (4:06) and I was in high school in year 10, I started to fall asleep in some of my classes (4:13) and I used to do a lot of sports and stuff like that and I just felt (4:18) more tired when I do the sports and when I come home from school.
I'd still do my homework but (4:26) then I would fall asleep after I do my homework or during the time when I was doing my homework I'd (4:31) fall asleep. It was a bit strange but I didn't really think that much of it at the time and (4:40) the doctors told my parents that I was anemic and this is why you know it was happening so (4:46) yeah they had me on iron tablets and stuff and that should like fix that you know in due time. (4:52) Yeah.
And then I started having cataplexy and at the time didn't know what it was and it was being (5:01) triggered by laughter and my very first cataplexy that I can remember was like my sister was like (5:10) I must have been ironing and then I finished ironing my clothes and then I my sister took the (5:16) iron when it was like you know after you iron you leave the iron to cool before you wrap the cord (5:21) because you're supposed to wrap the cord until the iron cools. Yeah. So the iron was waiting to cool (5:27) down and then she picked the iron up when it was probably like almost cool or whatever and started (5:31) chasing me around the house with the iron and then I just I was running away and then I fell (5:37) I laughed and just fell to the floor.
Okay. That's like my first memory of cataplexy. Yeah.
And so (5:44) this stuff like this kept happening and so they would just still oh they're so funny (5:50) that's why I would fall down like you know when people laugh so much that their stomach hurts and (5:54) your knees go weak and so that's what they thought it was and but it just kept happening and so then (6:00) when we talked to the doctors they were like oh she's having panic attacks because it would happen (6:05) at school like there was a ledge that I used to sit on near the drama room and I'm only five foot (6:13) four so I'm quite short and back then I was very slim and you need to sit on the ledge and I mean (6:17) my legs would like hang off and I remember like boys in the older years they would like go past (6:22) and then like put on your legs yeah and then I would like have have cataplexy yeah and then my (6:28) friends would have to quickly to hold me up so that kept happening and then they we talked to (6:33) the doctor and they're like oh you need to tell people at school to stop doing things like that (6:37) because she's having panic attacks this is what's happening and just don't put yourself in situations (6:43) where people can make you panic that's why these things happen. Yeah and did you think at the time (6:48) it was panic attacks or did that not feel like the right explanation for you? (6:53) For the panic attack I guess I was just like yeah when someone scares you then okay fair enough so (6:59) yeah you just kind of accepted it and were like yeah okay you'll trust their judgment yeah yeah (7:05) yeah. Wow so when you were at school and you started falling asleep did it affect your grades (7:11) at all or did you manage to get by? I managed to get by it didn't really affect my grades because (7:16) which was good and when I did my GCSEs I just like did my all my exams and then I just redo (7:25) them twice and then I would sleep the rest of the exam and so people would like find this very (7:30) strange and you'd see like other students like near you and they would like like trying to like (7:38) wake you yeah what are you doing like you know it's an exam you can't be sleeping like have you (7:43) the you know have you done the exam are you ready it's like a ready finish and they're like no is (7:47) that possible you're finished and they'd say that things like that yeah but I had it's not I wasn't (7:52) cheating or anything I literally had finished yeah and then now I was tired and I just needed (7:57) to nap and I napped and I remember being allowed to bring water in okay I don't know why but I (8:03) had requested that I was to bring water in and they allowed me and um and that used to annoy (8:08) some of the other students as well but yeah that was it but I was fine and I just napped at the end (8:13) and I didn't think anything of it yeah and then when I moved to college so like say that's the (8:19) summer and everything's sort of okay sort of dealing with it oh yeah I used to walk to school (8:25) it was like 14 but five minutes walk to school and 45 minutes walk back home but by the time I (8:31) reached year 11 it had become too much to do it so I had to start taking the bus yeah I was just (8:37) feeling too tired from the walk and so then I started so that's when we started to know like (8:43) something is up it's not just the panic attacks and the thing yeah and they sent me to see a (8:49) psychiatrist because they thought it was in my head I was making it up oh wow and we went for a (8:53) couple of sessions and the mum was like no we're not going back um they're asking you stuff about (8:58) your childhood it's like trying to figure out if you were abused or things like that yeah trying (9:03) to put things in your head and none of these things happen none of these things are relevant (9:07) to whether someone is why someone is sleeping all the time in classes yeah it makes sense (9:14) so both my parents are teachers so that sort of helped in in a way in that it wasn't like a teacher (9:21) from school saying to a parent that wasn't a teacher oh your child is doing this in class or (9:25) whatever they're also a teacher so they would be like okay if a teacher's come to them complaining (9:30) about a student that is sleeping in class it must be a certain amount of sleep it can't just be like (9:37) a small thing or they wouldn't have brought it into attention it's not just a one-off yeah exactly (9:43) because they wouldn't have complained to a parent either unless it had been so much that they thought (9:48) it wasn't going to affect the child's learning yeah yeah so that's what happened (9:54) and then we went to college and then strangely in that period like from summer to september when (10:01) I started college it just seemed to have just rapidly got worse because I hit college and it (10:07) was just like what happened in those few months it was just like a completely different thing (10:12) yeah and what did that look like for you I probably picked the worst subjects in the world to be doing (10:19) when you haven't been diagnosed with um an illness and you're having these things I was doing (10:25) maths retake because it passed maths so I yeah I passed all the other subjects but I didn't pass (10:30) maths and I didn't pass geography and I took 11 subjects and I passed everything else yeah so (10:35) I had to retake maths because if you don't pass maths you have to retake it I had to retake maths (10:40) I was doing piano outside of as an extra curricular yeah and I took law I took sociology (10:47) and intellectual wow very heavy subject yeah all a levels like the worst combination of well (10:53) yeah it's like books books yeah oh no so my English teacher she just like hated me for the (11:01) most like you know how dare you come to class and sleep through the lessons and then you're given (11:07) homework and you don't read all the chapters that you're supposed to read and then come back to (11:10) class the next day and sleep again yeah it was really irritating I could tell it was irritating (11:16) and because at that point they probably think you're just going out too much or not getting (11:21) enough sleep by choice or being rude yeah being lazy or why did you even pick these subjects in (11:27) the first place if you knew or you thought they were boring yeah but this was another case and (11:34) so I did my classes and I was fine to do the homework and hand the assignments in and I was (11:42) getting good grades on the assignments once I handed them in but definitely this issue to keep (11:47) up with the reading was torturous yeah law was fine I managed to keep up with law and sociology (11:54) I just I was still able to keep up with those and handing my assignments and stuff the problem is (11:59) is that because I slept through so much of the classes the teachers start to get really concerned (12:03) especially my sociology teacher about exams because then when I started to do exams I (12:10) would sleep through the exams unlike well unlike in high school yeah I could do the exam and sleep (12:15) after it had got to a point where I couldn't control the knockout sleep at all yeah so (12:21) I would sleep in the exams like I'd start the exams I'd start writing and then I would fall (12:25) asleep and then no one would wake me so then I would sleep through the exam and then I wouldn't (12:31) have passed the exam because I didn't even write hardly anything yeah and did you come up with any (12:43) strategies at that point to just try and keep yourself awake even if they weren't helpful at all (12:48) you know just to get by I started going to gym and you know to try to boost energy yeah blood (12:55) circulation in my brain and um no that wasn't helpful before if only the gym could have solved (13:02) knockout sleep that would be great so that didn't really help but I did try it and um and you know (13:09) nothing else I just kept pushing myself because I thought I didn't know what was happening but I (13:14) just thought I would be able to push through it because I remember my dad saying to me okay you (13:18) know we don't know what's happening with you but you don't have to finish these courses you can just (13:22) you can just quit them yeah and then you can you can go back and do something else later you know (13:28) once we figure out what's happening yeah but I am not a quitter I hate to quit things so I was just (13:34) like I'd rather it's a very bad trait to like force yourself to push through something even when (13:39) you're dying and I was like really suffering and it's still even my piano teacher was just like you (13:46) don't you're not practicing enough or whatever yeah and that's like but you know I thought that (13:51) it was when I think back now I think even with someone without narcolepsy three a levels those (13:57) particular ones plus piano plus maths is a lot definitely so a levels for anyone is very (14:06) challenging particularly at that age because I guess it's the first time that you're faced with (14:11) that much information and that many exams and in that level of detail yeah and so just then my maths (14:23) teacher she her husband gave her an article of someone who had narcolepsy who was a teacher and (14:30) she had to quit her job and she gave it to me and she said my husband found this and he said (14:35) please take this to your doctor if this doesn't help you I don't know what will and I took it to (14:40) my doctor and then within a month we got an appointment to see a sleep specialist yeah and (14:46) when we went to see a specialist he asked me like what are your symptoms what's happening with you (14:52) I just said I'm having muscle control weakness you know every time when I laugh I fall to the (14:57) floor I am sleeping all the time and do all my classes and everything and he said to me you (15:04) have narcolepsy I was in there five minutes yeah wow yeah five minutes and he's like yeah you have (15:10) narcolepsy and we're just in shock because one there was no people at this time so there's no (15:15) it was back in the day back in the days there's no way to do research and this is something you (15:20) have to go to the library or you know I think they had what was the one of the first search (15:25) engines thing that they had oh my gosh um it was like yahoo yeah even before yahoo there was another (15:31) one I can't remember the name but yeah it was there was one that was before yahoo and that's (15:38) all they had at the time and I said we didn't know anything about what is narcolepsy what is this (15:43) thing and he gave us like a little sheet of paper and like a little leaflet yeah like back and front (15:50) talked about it and it had a reference to narcolepsy UK and then we contacted them and (15:58) they have produced a four piece of paper booklet that was probably like three pages long or (16:03) something that came out like every three months or yeah something like that wow so that's all (16:10) the information that you have to go on really yeah it's just like wow and so I got the impression (16:16) and then he's like you have to say that you have tests and everything but I know that you have it (16:20) it's like 100% it's textbook narcolepsy yeah so there's textbook and I'm surprised you weren't (16:25) diagnosed you know this is crazy that it's taken this long and so there's three years um of before (16:31) I got my diagnosis but it came two weeks before finding SAMS okay so it was handy in that respect (16:37) yeah so I did get my extra time even though I couldn't take my sociology exam because the teacher (16:45) refused to send me for exams right he dropped me from the class and I just refused to accept it so (16:51) I just continued to attend good for you he was like you have to know why you're coming because (16:56) you don't want to take the exams I already spent so much of the year doing things the class I might (17:01) as well finish it so I just used to still attend a class but I couldn't take the exam but English (17:06) literature and law didn't allow me to take the exams yeah and so I took them I passed in literature (17:11) and I passed law but with low grades but I passed yeah and maths I went up a grade which was nice (17:19) so I went from an E to a D so that was very good yeah and I didn't have sociology and I didn't I (17:25) had to drop piano so it's a lot when you're a teenager and you're going you have all the (17:31) hormonal fluctuations of a teenager and you have narcolepsy symptoms as well not knowing what that (17:37) is and then having a diagnosis did you find that affected your mental health at all or how are you (17:44) kind of feeling in yourself at that point I was happy with this diagnosis because like at church (17:51) like they would say people they have this sort of like Jamaican joke thing about this thing called (17:57) dropsy and I think that basically dropsy is narcolepsy (18:04) is what they called narcolepsy in Jamaica back in the day and they didn't know what it was yeah so (18:09) they made up their own name for it and called it dropsy dropsy I mean it's quite accurate yeah (18:14) and so people would say stuff like that oh she's got dropsy or whatever so I was quite happy to (18:20) get diagnosed so then I would say no I don't have dropsy I have narcolepsy it's a serious thing (18:25) you know because they saw dropsy as some type of joke or whatever you know just like nodding off (18:32) at the table after too many cherries yeah yeah or eating too much food or whatever and they just saw (18:36) that as like normal and it's like no that's not what it's about it's much more complicated than (18:41) that and so it made me feel validated so I didn't really care if people said negative things because (18:47) I'm like I would just be like I have narcolepsy yeah that's why I come back yeah so I like I knew (18:54) that it was like a proper thing because I had to go to the hospital they had to attach things to (18:58) my brain like it's serious it's not like a joke so yeah so whenever people say I'll be like yeah (19:03) you can say what you like it's not I this is neurological it's happening inside of my brain (19:09) it's not I'm not making it up it's not a mental thing this is real yeah yeah and how did you find (19:15) the acceptance from your family and friends did they understand your condition or did it take a bit (19:19) of time to help them understand what it was really like for you well thankfully my family (19:25) was very supportive even dad because more when before the diagnosis I felt that mum was the one (19:31) that was more pushing that really felt something was wrong with me and I didn't feel like dad was (19:36) like I don't think dad really believed that something was wrong with me but once I got my (19:40) diagnosis he came on board 100 yeah yeah so that helped once you had the actual yeah the printed (19:46) diagnosis yeah you were like see it's there it's on paper yeah and my sisters yeah they were fine (19:54) and um my friends yeah sort of bit by bit sort of how can they help what can they do you know (20:03) knowing that you don't have to wake me every time I'm asleep like if I was in charge you have to (20:08) pop me every time right yeah so like things like that yeah just let you sleep yeah and did you start (20:15) medication straight away yes I started medication straight away I was on modafinil and 100 100 grams (20:24) and how I understood it I was just like oh you get you take your medication and it just makes you (20:30) normal that was my understanding of it and as long as you take your medication you know you can (20:35) just sort of function as as if yeah as life was before but that wasn't the case but that's how I (20:42) understood it in my head yeah so like every time it was when it was working at the beginning I would (20:48) feel like my old self to the most part and um I'd still have to take my naps as I was instructed to (20:58) take my naps so I took my naps twice a day and um I took my medication and I functioned quite fine (21:04) and then maybe after like six months or so then I'd find it wasn't as effective and then they'd (21:13) have to up my dose and that seemed to be like a continuous pattern of me feeling really good (21:18) and functioning great and then after several months or a year then I need an up dose again (21:25) and that continued yeah so by the time I started to have stomach aches and feel unwell from the (21:32) daffodil I was on it from I was 18 till I was in my 20s late 20s and what dose were you on (21:40) at that point by the time I stopped taking daffodil I was on 800 wow that's a high dose yeah (21:47) and was that enough to keep you awake and functioning throughout the day with my with (21:52) my naps yes yeah but you were having side effects and things yeah I was having side effects and it (21:59) it was quite interesting because it was like imagine at 18 I started at 100 yeah and I've (22:05) gone all the way up to 800 it's a lot yeah difference yeah that is a big jump I think (22:11) the maximum dose I got to was 400 milligrams um a day but I also had to come off (22:18) modafinil because of the side effects like it was just making me feel quite like low mood and (22:23) I was getting lots of stomach aches and I was hungry all the time as well yeah um did you get (22:29) the same I don't remember being hungry but I do remember the stomach aches were really bad (22:33) and I already had not so long after that diagnosis I ended up with IBS oh no so they (22:40) have an extra stomach it wasn't really helpful and that summer we spent so much of the summer (22:45) in hospital trying to figure out why my stomach was hurting me so much yeah and then finally one (22:50) of the doctors was like I think it's the medication that she's on let's take her off it yeah and then (22:56) the stomachs went away oh wow so then I realized that's what it was yeah and did you go on to (23:00) another medication after that or did you have a period of time without no they put me on something (23:05) straight away okay yeah so fast forwarding to now how are you finding it managing narcolepsy (23:16) are you taking medication or um yeah are you managing without it so I recently two years ago (23:23) um my blood pressure raised quite high so they thought I was gonna have a stroke so they took (23:29) me off my stimulants which was very scary for my body because being on stimulants from the 18 years (23:37) old until I'm 40 now so until 38 it's a long time to go on stimulants and then they didn't (23:44) titrate me off they took me off cold turkey and my body was like what are you doing you evil person (23:52) this is horrible and I sleep in like 12 hours a day for months wow and I had to go to Kenya (23:59) to recuperate with my my dad who's in the countryside in Kenya um and I had to go there (24:06) and recuperate and I was there for six weeks and mum was like I was like a baby I'll just eat and (24:14) sleep eat and sleep eat and sleep eat and sleep I just I sleep and I wake up and I'd be hungry (24:19) yeah and eat and then I'd work on the rest of it oh yeah it's just crazy and I just like (24:25) snap at people like something that really like very weird like snaps all over the place yeah (24:31) it wouldn't take a lot to like get me like be upset yeah I guess when you're so tired and you're not (24:38) the narcolepsy symptoms aren't being managed it's very hard to regulate your emotions as well on top (24:43) of that yeah definitely I become very irritable when I'm tired as most people close to me know (24:50) I say to people if you imagine if you weren't getting sleep it does make you irritable you just (24:58) can't help it because your body can't function properly you can't think straight you don't have (25:04) patience for anything yeah at that level and that's that's why that that level of sleep deprivation (25:10) it causes that yeah definitely yeah don't know about you as well but I find when I start getting (25:15) really tired um even when I am taking my medication I find it's I start getting a lot of negative (25:21) thinking patterns and it's really hard for me to stay positive and I start um yeah just thinking (25:27) like negative thoughts or getting more anxious and I feel like it's because my brain is so tired (25:32) it just can't keep those at bay anymore um so I start thinking you know the rose-tinted glasses (25:38) come off and everything seems like so bleak and yeah I'm like right I just need to have a nap or (25:43) go to sleep and hopefully I'll feel better afterwards yeah and usually you do yeah yeah (25:48) and then you wake up and you're like oh well yeah I'm sorry about earlier yeah yes exactly I was a (25:53) bit grumpy yeah I feel better now so you've decided to set up a podcast and you're doing some other (26:01) work um with your Naps for Life as well um what inspired you to do all of that? So um with Naps (26:10) for Life um it's been three years now that I've been running Naps for Life as a peer-to-peer support (26:14) group on Facebook and it's like Zoom meetings and allows people to just come and be themselves be (26:23) around other people who have narcolepsy and just like then share their stories what's happening (26:27) their week their life talk about narcolepsy or not talk about narcolepsy you know it depends you (26:33) know some people talking about how their week has been and what different ways narcolepsy has (26:40) affected their week that helps them and some people not talking about anything with narcolepsy (26:44) helps them as well yeah so it's open for both and um everyone around them anyone around the world (26:51) can come and enjoy and I've met such amazing people from it and all walks of life and stories (26:58) people I would have never met otherwise so from that I thought to myself there are a lot of people (27:04) who come on who also don't come on the Zoom they just talk in the chat and and maybe they don't (27:13) want to come on because they don't want to show their face because when I started Naps for Life (27:18) I started in COVID and there were some trolls or some like negative people because you know Zoom (27:26) wasn't that popular before and COVID made Zoom really popular there was like some like predator (27:31) people who used to try to join you're right yeah join people's um Zooms and stuff and so because (27:38) of that I made the policy that people had to put the cameras on because then you couldn't have a (27:43) know who they were and yeah wow they must they really need to get a lot of people who do that (27:49) just joining other people's Zooms just to troll them yeah so I had to do it in a way where I (27:54) couldn't post the Zoom links like publicly you had to be a part of the you had to be part of the page (28:01) you had to like answer questions in order to join the page to have access to that side so that we (28:06) wouldn't have like we need to filter out like the weird people yeah yeah so so we did that that (28:14) so because of all these people that I've met I wanted to tell their stories just like how that (28:20) teacher the maths teacher I'd love if I ever could meet her again to thank her as you know she she (28:26) doesn't know how much she helped change my life yeah and so I want to tell other people's stories (28:31) so they can help change someone else's life because what might happen what might resonate (28:36) to someone from my story might not resonate to someone else what someone hears from your story (28:40) they will resonate with that and someone else might not resonate yeah definitely I think all (28:47) our journeys even though they overlap quite a lot they are all very individualistic at the same time (28:53) yeah um and so you know you can speak to some people who have the same symptoms as you or the (28:58) same medication and that really makes sense for you and then you hear other stories and you're (29:03) like okay well it's not like my story but it's actually really good to hear those as well yes (29:08) yeah and I and I like that also because I met a lot of people who got their symptoms later in life (29:15) and I always find those um stories quite fascinating as well because they got to I (29:22) would say to them it's interesting and it must be harder for them I'm not saying it's easy for (29:28) anyone who has narcolepsy as a child or anything like that especially like kids that didn't have it (29:33) and then got it because of like the vaccine and things like that that was me yeah so you're one of (29:40) the vaccine babies so yeah so it does make things a bit different but I I just wanted to (29:49) just had brain fog that's completely blank now oh so you're saying how good it is to like connect (29:55) people even when your stories are quite different oh yes and the people
