Episode Transcript
[00:00:00] Speaker A: Foreign.
[00:00:10] Speaker B: Hello, welcome. You're listening to season two of Narcolepsy Navigators, brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kearley Boga, the founder of Naps for Life Narcolepsy and welcome to our stories.
Hi, everyone and welcome to Narcolepsy Navigators. I am Kerly and I have narcolepsy type 1, sleep apnea, restless leg syndrome, REM behavioral disorder and pruric limb disorder. But I mostly focus on my narcolepsy, even though I have multiple sleeping disorders. And I am your host and I'm.
[00:01:01] Speaker C: Liz, the co host and I have narcolepsy type 1. So that's with cataplexy as well.
[00:01:06] Speaker B: Hi, Liz, how is your week? How are you doing?
[00:01:09] Speaker C: Hi, everyone. Yeah, I'm doing all right. So I'm very tired right now. Just had a very busy week at work, using lots of brain power. And I've also got my period, so that completely wipes me out. So I'm just vegging out on the sofa right now, but I'm here and I'm breathing, so we'll see how it goes. How are you today, Kerly?
[00:01:30] Speaker B: Yeah, I'm fine. A little bit tired because I just had dinner and you know, that makes you sleepy. Then my sister was like, you know, you have interview now. I'm like, yeah. And I feel sleepy. And she goes, why did you eat? So you know, girls gotta eat.
[00:01:45] Speaker C: We've got to get that food.
[00:01:46] Speaker A: So. Yeah, potatoes.
[00:01:48] Speaker B: Yeah, that makes me sleepy. But I just had my hair done. I just had my hair done.
[00:01:53] Speaker A: Looks very nice. What did you have them?
[00:01:54] Speaker B: So I have locks. So every six weeks, weeks I go back to have it redone. So the part of the locks that has re. The part of the hair that has grown out, she tightens that part so then it looks completely fresh. So like if you saw me yesterday, you'd see lots of like regrowth. The new hair that has grown, you'd see probably like 2 inches or so or an inch of growth. So now you won't be able to see that anymore because it's tightened so it just looks like really neat and fresh.
[00:02:22] Speaker C: So your hair is wrapped up in it?
[00:02:24] Speaker B: Yes, sort of. Yeah, sorry.
[00:02:26] Speaker C: My basic knowledge.
[00:02:28] Speaker B: Yeah, it's. Yeah, my hair is locked, is locked into. Well, that's what locks is. My Loose hair. My loose Afro hair is all together in the lock.
[00:02:38] Speaker C: Does that hurt when it's done?
[00:02:40] Speaker B: No, it doesn't hurt.
[00:02:41] Speaker C: Oh, that's good. I've seen videos of people getting their hair like Afro hair braided and they're like wincing away.
[00:02:47] Speaker B: Yeah, that hurts more. No, this doesn't hurt.
[00:02:50] Speaker C: Yeah, that's good. Well, it's looking good.
[00:02:52] Speaker B: Yeah, you shouldn't feel any pain. If you're feeling pain, then that's not a good thing, you know, you shouldn't feel pain.
[00:02:56] Speaker C: Yeah. You need a new hairdresser.
[00:02:58] Speaker B: Yeah. And that means you're having too much tension on your hair. As I'm studying here, just hairdressing at the moment. If you're doing a style that is causing you that much pain, you're pulling on your hair strands too much and there's too much tension. That can lead to things like traction alopecia and things like that. So you shouldn't want to. Yeah, I know sometimes you do stuff for fashion, but sometimes, you know, it might be fashionable now and then maybe in. If you keep doing that, in five years time, you might have wished you didn't do that hairstyle.
[00:03:27] Speaker C: Yeah, that's like when I do these, like slick back tight ponytails and I just know it's gonna start, like, receding up hair soon.
[00:03:35] Speaker B: Yeah, yeah.
[00:03:36] Speaker A: I done a slip back today and I was like, oh, the headache. Like, it was so tight. Everyone's like, oh, your hair looks so nice. And I'm like, yeah, I'm never doing it again. Stop saying that, you'll make me want to do it again. And I just. Yeah, I had greasy hair, so it was fine. Greasy hair, slip, back, bun.
[00:03:51] Speaker C: That's me, like three days a week.
[00:03:52] Speaker A: Yes. Love it.
[00:03:56] Speaker B: So today we're speaking with Chloe and the subject is hallucinations. And welcome to her story.
[00:04:04] Speaker C: Welcome to our guest. Chloe, do you want to introduce yourself?
[00:04:08] Speaker A: I'm Chloe, I'm 23, I'm from Brighton but I'm currently living, living in Cardiff to study uni. I have narcolepsy, type 1 and obstructive sleep apnea.
[00:04:18] Speaker C: Winning combination.
[00:04:19] Speaker A: Perfect combo.
Day was good. I started off my day at clinic because I'm at uni studying optometry. So I done about two hours of clinic and then I went and met a lady who has just given birth to twins. So she needs some help walking her dogs. So I volunteered to walk her dogs. I then needed a nap, but, yeah, it's been a busy day.
[00:04:38] Speaker C: Nice. And tell us a bit about your journey to your diagnosis of narcolepsy when you first started experiencing symptoms and all of that?
[00:04:47] Speaker A: I got diagnosed about two years ago. 2021, 2022 time. It was actually just after Covid. Yeah, I've known, I've had it since I was like 12, 13 because like we would go away on camping trips or like we would go in the car anywhere, like to school and I would struggle to get out of bed in the morning. Anyway, as soon as I got in the car I was like, nap. It's a 10 minute journey. Try and nap as quick as possible. Or even that. I just literally couldn't stay awake. And then I'd go to school every single lesson within the first 15 minutes I was asleep. And I'd have to tell my friend, you know, keep, keep nudging me. She's like, girl, you're not sleeping. I was like, no, trust me, I'm sleeping. 9:00 at night, I'm trying to go to bed on the dot and I'm just waking up exhausted. So yeah, I'd get her to try and poke me, wake me up, all of that. And it then slowly progressed to. I was then falling asleep. As soon as I got home, I was falling asleep on the train, I was falling asleep on the bus. I couldn't stay awake. When I was 18, I got a job as a barista and I was holding coffee jugs and I would only wake up because I would be burning my hand from all the steaming. Either that or I've dropped the milk. Every employer I've had has thought I was high. They never like, I didn't know it was narcolepsy, so I had no excuse. And I couldn't say I was hungover because I wasn't. I didn't really drink much and I couldn't say like, you know, it's not hungover. I'm not sleeping at night. I'm just. I don't know, I can't explain it. Coffee didn't really help. Kind of done the opposite. It made me just tired with a fast heart rate. So I couldn't explain that either. When they'd be like, oh, just, you know, go and have a coffee. It's really hard to turn around and be like, that's not going to help me. And I don't understand why. So yeah, it was to the point where I was going to the doctors religiously every three to six months. Sometimes I would take my parents and they just didn't take me seriously. Like one of them was like, well, you're awake now, so it can't be narcolepsy. And I just was like, wow, that's a pie in the face. And it makes me feel really small. I've cried in front of doctors and I was like, why won't you take me seriously? And the lady was like, you need to pull yourself together. And sort of ushered me out. I'm not like an abrupt person and I'm not like a. Listen to me. Like, you know, like some people can be and I'm just not. I'm quite gentle with how I approach things. And it only got to the point where I was bored of hearing you don't weigh enough. So I'd eat loads of food and don't go to the gym so that I put on weight and I'll go back and be like, right, well away more now. And I still got the same problems. So now what? Well, you're vitamin D deficient. So I double dose on vitamin D, come back three months, six months later and be like, well, now what? Like vitamin D is fine. I put on weight, I'm two sizes bigger, I don't go to the gym as excessively as what you thought I did. I've changed my diet, I've started eating like this, I've regulated my sleep, nothing's helping. And it was only when I cracked. So I had a car crash. I was driving my brother's car. Wasn't actually my car, I was just insured on it, thank God I was driving his car and there's a little route home where it goes from like a 60 into a 50 and it will turn into a 30 and I was doing the turn from 50 into 30 and I fell asleep whilst doing that turn. So I probably was swinging at like 45, possibly 50. I actually don't remember any of that journey, which was kind of scary. And I'd hit a advert trailer. So advert trailer spun one way, I span the other way, bumpers gone one way. It was just debris everywhere, but it was quiet so there was no car around. So I kind of just tucked the advert trailer back, got back in my car, phoned my friend because I was too scared to phone my parents and was like, you need to come and get me. I don't know what I've just done. I think I fell asleep and you know, help. And they towed my car back. I told my dad I hit a badger. Obviously he knew instantly that was a lie. He went, he fell asleep and at the time they. Not that they didn't Believe me. But they didn't think it could be narcolepsy and they just thought it was iron deficiency or. I was going to the gym a lot. I was kickboxing three, four times a week for two hours at a time, sometimes running to the gym, which is 10, 15 minutes away. So I was sometimes running there. Running back or cycling there, Cycling back. I was quite active. My parents saw that as you're doing too much. Like, that's why you're exhausted and it's, you know, which is fine. But, like, when you're really trying to convince people, it's really hard when, you know, it just sounds crazy to everybody.
Yeah, I crashed my car. They knew I'd fallen asleep. My mum and my dad turn around and was like, right, you know what we actually did, you know, we think you've got narcolepsy. Like, we. We can see it now, you know, it's not just like, we've got photos, we've got videos of you asleep everywhere. The evidence is all there, you know, You've just got to look at it. The evidence was all there. And I think I phoned the doctor and I was like, right, I had enough, right? My bloods have come back. They were clear. They dismissed me and I was waiting to hear back from them and they just didn't tell me. So I phoned them up and I was like, right, can I find out the results of my bloods, please? Obviously, the day after I'd had the car crash, I was fueled with some anger, and they were like, yeah, you've been discharged. Everything's clear. And I was like, why won't you take me seriously? I just crashed my car. I could have, like, obviously. There was a few French words in between, like, I've written off the car. I've just had to pay a grand for, like, all repairs because I can't go through insurance because they thought I hit a fox. And, you know, they don't actually know what I've done. And, you know, you can't take me seriously. I could have hit someone. I could have hit. I could have hurt myself. I could have hurt somebody else. I could have done way more damage than what I've already done. You keep telling me I'm normal. I was like, this isn't normal. Nothing about this is normal. Nothing about falling asleep about 40 times a day is normal. I can't stay awake when I laugh. Like, I just sort of go dizzy. That's not normal. And you told me that was just a quirky laugh. Nothing is Normal. And she was like, I was gonna pass you over to a doctor and like kind of put me on hold and pass me over to a doctor who was like, look, can't promise that the sleep studies are going to take you seriously. You don't have the symptoms. I'll write a referral anyway. So they wrote the referral and within a week sleep studies phoned me. And the first thing she did was apologize. She said I should have been referred to them years and years and years ago. They were like, there is no way that you should have waited this long just to get a referral. They didn't even do the Epsworth leafiness scale on me. And every time I was going back and saying, I can't stay awake, I am sleepy, they didn't even think of doing that test. And that test is an indicator that you have a sleep disorder. Like, come on, it's not hard. Like that's like the basic. Yeah, someone says I'm excessively tired. You think that's her sleepiness scale? Let's just try it. So yeah, they done that. She apologized, she told me she most likely thinks it is narcolepsy. There's no way. It's not. And the other thing that she said is there's no way. I don't really have sleep apnea because it's usually for 50 year old bald men, really, really, really overweight. And I was like, oh yeah, sweet. Oh, I know, sleep apnea. Then test comes back obstructive sleep apnea and I'm falling. Like I think it's 15 and a half, which is not too bad. Like I don't think it's really bad. I think it's like on the verge of being like, okay, but you know, you do still stop breathing. And then I have narcolepsy, type one. It was very interesting, my first few studies. First one, I didn't sleep at all. So then they thought they'd try it again the next night. Again I didn't sleep at all because they're all wired up like two nights in a row I had not slept. So then they were like, right, third night, third time's a charm, let's try it again. And I managed to get, they managed to get about two hours sleep recorded and sorted. So I was able to go in and do the next step, which is like where they tell you to nap. Yeah. My quickest time into REM and falling asleep was 45 seconds.
[00:12:00] Speaker C: Wow.
[00:12:01] Speaker A: They were like insane. We've never seen that. And I was like, well, you're welcome. There you go. Education right there.
[00:12:07] Speaker C: Yeah, it really is.
[00:12:10] Speaker A: But, yeah, that was my journey. It was all through Covid, I think, from getting the referral and hearing back from them. From then actually getting able to sign up for doing all of the sleep studies was two years because we hit Covid. So I got my referral, I got told I was added to the waiting list and they're going to see me really soon. And then Covid hit and I had to wait two years to get seen. And I, trust me, I was phoning every time I thought that restrictions were just lifted. I was like, where am I? In the queue? When are you going to see me? And they were like, about another month. So a month's time I'd find, when are you going to see me? And they're like, well, restrictions have gone back up probably another three months.
[00:12:44] Speaker C: That must have been so painful considering you literally had symptoms from the age of like 12. You finally convinced doctors to take you seriously and then you just couldn't get through because of COVID This final barrier just got you.
[00:12:59] Speaker A: Yeah. And after the car crash, I gave my car up. I stopped driving. I said, I'm not driving, not until I know I'm medicated, I'm safe and I'm not going to hurt anybody or I'm going to hurt myself. Like the amount of times I would curb it and I didn't think anything of it and it wasn't until my car crashed I thought, oh, my God, that could have been a person. Yeah. And I wouldn't have known. That's dangerous. So I was like, gave it all up. And I don't know if you've seen on my page, I do a lot of motorsport, so I go car. I do. I've done a few Jonathan Palmer sports days. They're really, really good fun. And I currently race for the uni in the motorsport team would say I'm amazing. They've all been racing since they came out the womb and I haven't. I've raced about five times a year on rental go karts for 15 minutes. You know, I race for the uni.
[00:13:42] Speaker C: That's amazing.
[00:13:43] Speaker A: So, yeah, we do a lot of stuff like that. So giving up my car was like giving up a really big part of me. Like, I love driving, even if like literally just pop into shops. I love the drive and I love driving. I love being in a car. And so giving that up was like, I just gave up half of myself. I can't do anything, I can't race. I Can't. You know, I may have lied to some of the race days that we went to and said I was, you know, I didn't have any medical conditions.
[00:14:09] Speaker B: Yeah. Because I was gonna ask you, how did you get to do the go cuts and stuff continuously?
[00:14:13] Speaker A: Oh, I don't tell them.
[00:14:14] Speaker B: Yeah, because I did it once and I. I crashed. I fell asleep and I crashed into a tree and yeah, I fell and it fell right next to me.
[00:14:23] Speaker A: No. Yeah, no, I've never fallen asleep. Go karting, I think.
[00:14:27] Speaker B: Oh, no, wrong one. Not go karting. Quad Viking biking.
[00:14:30] Speaker A: Yeah. The adrenaline for me, even when quad biking, I love doing little wheelies. Like, it's just, I've got so much adrenaline going through me because I feel like me. Like this is what I love. Like, there's no way any afterwards, though, comatose, absolutely comatose for like two days straight. Like, I'll race with the uni and I will be asleep for the whole journey back. I will have to miss all my lectures the next day because again, comatose. I ache, I'm knackered. No tablets are touching the surface. It is one of those days where I'm like, I feel a zombie. It's always like that. But it's worth it for me. Like, I think it's balanced, that it makes me happy.
[00:15:06] Speaker C: I feel like a lot of people who have narcolepsy have something that they can just about stay awake for because they love it so much.
[00:15:14] Speaker A: Yeah, yeah. Everyone has that one thing that you're like, even if it's going to kill me the next day, a pin in narcolepsy. For the moment. Yeah.
[00:15:22] Speaker C: It's worth it to like push yourself over the edge.
[00:15:25] Speaker A: Yeah, just a little bit.
[00:15:31] Speaker C: And how did you feel when you were finally diagnosed with narcolepsy and sleep apnoea?
[00:15:37] Speaker A: So I got a letter to give me the diagnosis. My parents were already home and they'd seen that a letter had come from the hospital to set the scene. My mum stood behind me and I didn't, at first I didn't understand why she was stood behind me. I was just opening a letter and my dad was slowly reaching his arm out to sort of cut my armpit, like, just in case. I opened it up and I read it and I had a full blown cataplexy attack. So I was so happy. I did, I did have a catapulty attack. I read it and I was like, oh, my God. Oh, my God. And so as I've said it, I've gone up and, yeah, legs went Face when they were laughing, like my parents. I want them to laugh at it. Like, it's not. It's not a bad thing. Like, I kind of find the cataplexy really funny. And I think if I was to find it really dramatic and really like, like, well, I have cataplexy. I can't stay standing when I laugh. People are gonna, like, panic and pander to me. I don't want that. Like, laugh is funny. Like, I can't say standing when I laugh. That's hilarious. So then I laugh at myself and I make it even worse. And I think it just puts such a lighter mood to it. So, yeah, they tried to catch me as I've opened the letter for my diagnosis. But it was just a really. It was a good rush of emotions. Like, I was just, I'm not crazy. It's not all in my head. Here's the proof. It's in writing. Massive weight lifted off my shoulders.
[00:16:48] Speaker C: Definitely. I think that's such a classic story as well, to like, I had a similar experience. It didn't take that many years. It was four years to get diagnosed. But the constant going to the doctors and saying, I'm still tired. And they're like, check your floods and do all these, like, random tests. And I remember I literally had to go with a printout of what narcolepsy was. And I was like, I almost missed this appointment because I fell asleep. And that was the first time that they actually took me seriously.
[00:17:19] Speaker A: Yeah, trying to get a doctor to take seriously is impossible. Sometimes it's impossible.
[00:17:24] Speaker B: It's interesting, both of you, because you actually had the clip out of narcolepsy to show and you already knew what narcolepsy was. Yeah, well, in my case, it was so long ago that I even know we even know what nocopsy was. There was no Google even exist. So there was no checking your incentives on any system to see what popped up. Nothing like that. If it wasn't for the teacher's husband that found a newspaper article of someone who had it and gave it to me, God knows how long I would have weighted more after constantly, like you going to the doctors, you know, doing someone's test, going to psychiatrist, everything. But there wasn't. We didn't have anything to Google to search to anything. We never even heard of it before.
[00:18:13] Speaker C: It makes you think, like, how many people around that time would have taken even longer to get diagnosed or just not got a diagnosis at all? Because I think so many people in, like, mine and Chloe's generation Would have just googled it or. Yeah, found it online somewhere.
[00:18:32] Speaker A: Oh, I love Googling my symptoms. It's great. I usually tell myself I've got five days to live. It's such a dramatic roller coaster. I'll enjoy it so much.
[00:18:39] Speaker C: We've already got narcolepsy. We don't need any more illnesses.
[00:18:41] Speaker A: I was like, what else can I add to my list? Right, what could it be?
[00:18:45] Speaker C: Air conditions.
[00:18:47] Speaker B: Be careful what you wish. Be careful what you wish for. The two of you could end up with more like me.
[00:18:52] Speaker A: Join the Getting tested for. For epilepsy. So I've started having. And it didn't start. It's always been like. My friends have always joked that I look like I'm having an epileptic fit when I'm asleep and I really scare them. And I've just noticed, like, my face sometimes will have these uncontrollable, like, twitches and it's almost like I want to grip my teeth to make it stop. Any way I can describe it is like, say you got like a rope or a band or anything. And it's like I've got no consciousness in my head, but it's like a band that will go like this of consciousness and it'll wave forward and wave forward and I'll lose all consciousness everywhere. But like, it's almost like a wall. And then it started happening in my legs and like, just loads of other stuff and it happens, like in clusters. And they think it might be epilepsy, but they also think it's a rarer type of narcolepsy that they don't know much about at the moment. It's a really, really, really rare form of cataplexy. It's almost. It mimics epilepsy, but without having a full fit. It's just. Yeah, it's really, it's. It's sleep related, but they don't know much about it at the moment, so it's. It's very rare.
[00:19:53] Speaker C: I don't know if this is related, but I've had this feeling before where it's like the whole room goes like.
[00:20:00] Speaker A: Like that.
[00:20:01] Speaker C: And it's so odd. I'm just like walking around and everything.
[00:20:04] Speaker A: Like, you're like that? Yeah, yeah.
[00:20:06] Speaker C: And I have no idea what that is, but I did ask a doctor or a sleep pharmacist once and they said it could just be like the fatigue kicking in. But it kind of sounds like what you're saying with this different, like, wave.
[00:20:20] Speaker A: Of energy and it's just. Yeah, yeah, yeah.
[00:20:24] Speaker C: Interesting.
[00:20:25] Speaker A: Again, they don't know much about it and it wasn't really suggested that it could be like they've jumped straight on the epilepsy train because my granddad had epilepsy. But I know that it has the potential to be. They said, you know, there's not much that they know about it. It's not very well heard of. It's something I think is getting looked into is a slightly rarer form of cataplexy in the fact that it's not just linked to emotions. It will be, it will be that consciousness related. Obviously I don't go unconscious. I just feel like all my muscles in my face are just uncontrollably twitching.
[00:20:57] Speaker C: I get twitchy eyes when I'm tired.
[00:20:59] Speaker B: To say this so that people know about the lazy eye.
Yeah. So I've noticed it with different people with narcolepsy that everyone has a slight lazy eye. And so I was just looking at Kelly's eyes to see if I could find her lazy eye and I found it and then she has agreed that she does have a lazy eye.
[00:21:19] Speaker C: I'd like to know the scientific facts behind this, Caralee, that every narcolepsy.
[00:21:26] Speaker B: I don't know the scientific facts but I have looked at pictures of myself prior to having narcolepsy and pictures after. And I have lazy eye. After I was diagnosed, after I had narcolepsy, I have a lazy eye and before then my pictures don't have it. And when I look at other people who have narcolepsy and I look at their, their photographs, I can find their lazy eye, especially if they're really tired. It's there. Everyone, one of their eyes is weaker. It's. It, it's. Yeah, it's smaller. Yeah.
[00:21:57] Speaker A: From optometry point of view, it is. You do have. Some people have muscle imbalances. I've had it since I was a kid. So mine, I don't know if it's narcolepsy related, but when one of the muscles, one eye is just not as strong as the other, sometimes we've got difference in prescription as well. So, like if one eye is stronger than the other anyway, in prescription it's going to suppress the other and the other one just doesn't work. So, yeah, that's why I see some people get patched and that to try and make the weaker eye stronger. Mine is, yeah. It wasn't as noticeable when I was a kid and was like almost there and my mum was like, you didn't really need a patch. Like you only Had a little lazy eye. And now in every single photo, I'm like, my eye goes like this. It's a thing.
[00:22:36] Speaker B: It's a thing.
[00:22:37] Speaker A: And I've got, like, nothing. Control over and more like, again, that wave of energy. It's just something that I think needs a bit more time to, you know, more people to say. Oh, yeah, actually, I've got that.
[00:22:48] Speaker B: No, it's interesting you're saying that, because this year I started to have cataplexy. I think. I don't. I'm not sure if I mentioned this to you, that, like, over the Christmas, I was saying. Remember I was saying to you I was having cataplexy. That was not from my normal emotions. Like, it wasn't any emotions that should have triggered it, but it was just happening. And in the summer when I went to Spain, I had really bad cataplexy. Yes, it was really hot. So that could have, like.
But I had, like, an unbelievable episode where no one around me knew I was ill and I was. So it's like I had some type of, like, heat stroke that put me into a cataplexy where I felt like I was dying, but no one knew that I was dying. And I was sitting right next to the driver and I couldn't breathe. My heart was racing and I was twitching and everyone. No one knew.
[00:23:44] Speaker A: Yeah. Narcolepsy is, like, obviously heightened by the heat. But also, I think if you're on stimulants, like, I'm on stimulants. Stimulants and heat are not good friends. They do not go well together. And I found that out this summer when I just could not cool down. And I was like, someone put me in an ice bath. What is happening? Yeah, they don't. Narcolepsy and heat, stimulants and heat, bad combo.
[00:24:09] Speaker C: And so what medication are you on at the moment?
[00:24:12] Speaker A: So I'm on modafinil and methylphenidate. The modafinil on its own wasn't strong enough. It didn't really work. And then I'm on methylphenidate, which they originally put me on 15mg a day. Helped at first. Body adapted to it really quickly. So Now I'm on 400 milligrams of modafinil and 60 milligrams of methylphenidate, which I think is almost max. I've maxed out Modafinil. That's full whack. Methylphenidate. I think I'm almost there.
[00:24:41] Speaker B: Sorry. Don't let them push Him a definite. Any higher than that?
[00:24:44] Speaker A: No, they can't.
[00:24:45] Speaker B: I entered. I entered mine at 800.
[00:24:48] Speaker A: Yeah, I think it's not recommended past 400. I do know a few people that are on 800, but my consultant was like, once you've reached 400, 800 isn't going to do much more for you. So we're not going to push that, we're just going to try a different drug. Sorry, what was your other question?
[00:25:02] Speaker C: How is your sleep at night? Like, do you find that your sleep is actually okay or is it quite broken?
[00:25:08] Speaker A: My sleep is always really broken. It always has been, with or without the stimulants. There's definitely days where I don't need to take my full dosage and I do play it by ear and there's some days where I literally can just have the modafinil. There's other days where like, today I've done a dog walk for about an hour and a half, which killed me. Took about half an hour walk there just to get to the house, half an hour walk back. I didn't have time for like a nap. I usually have a nap around lunchtime, but because my clinic and the dog walk overlapped, didn't have time for a nap. So I will take full whack dosage there because of all of the walk in, I'm knackered by the time it comes to bed and it has actually worn out. Yeah. So my sleep is broken either way. I never sleep through the whole night. I think I've done a post once which compared mine and my mates like apple watch sleep things. And mine is literally just. You go into sleep for like an hour, you wake up asleep for about half hour, wake up again, you're awake for ages to go back to sleep.
[00:25:58] Speaker C: It's.
[00:25:58] Speaker A: It's. Yeah. When people say, oh, narcolepsy. God, you must sleep so well. God, I wish I had that. And you're like, yeah, okay.
[00:26:06] Speaker C: Oh, my God, the amount of times I've had that. Like, oh, you must sleep all the time. Like, you're so lucky. I'm just like, yeah, Literally you do that.
[00:26:14] Speaker A: You're like, okay, yeah. I don't even know what to say to you. I used to explain myself. Now I'm like, I can't even laugh at this.
[00:26:21] Speaker C: I think that's the thing. Like, it's. It's great to have your close friends and family know and the people that you want to know about the condition, but sometimes there are people around you who don't get it. And it's like, actually, it's not my job to educate you and I don't have the energy to do that right now. And that's okay.
[00:26:38] Speaker A: Yeah, exactly. I am definitely an educator. Like, I am. Hi. Narcolepsy. It's a conversation I always have with everybody, like the whole motorsport team. I've got it. They know I've got it. They know I haven't put it on my license to race, so they're well aware. Except the president. I didn't tell him because I didn't know if he was going to withdraw me from the group, and I really hope they haven't told him. So soon. Find out when I'm withdrawn. That's fine. We'll move, take the L and leave. But they were all like, wow. All things considered, like, they were just. It's the first time I've got a really nice reaction to, like, they just saw me take some meds and they were like, oh, what are you taking? And I was like, legalized cocaine and as a joke. And they were like, no, seriously, what are you taking us out? This and this. And they thought I had adhd. And I was like, no, I have narcolepsy. And one of them was like, I'm so sorry, you're gonna have to tell me what that is, because I don't know what that is. And it sounds really close to necrophilia and I really don't want to think you're a necrophiliac. And I was like, this conversation took a very weird turn.
So I did explain narcolepsy. And, you know, the questions were, so, do you do this? Like, do you do that? Well, that must feel really cool. Like, you know, how did you know? What's this? Like, like, they were just genuine questions. They weren't ones that were like, had a condescending underlying tone to them. They were just really nice about it.
[00:27:52] Speaker C: That's the best reaction you can hope for, I think, is when people are genuinely interested and they want to learn and they might have misinformation that they've learned over time, but they're open to kind of new. New information about that.
[00:28:06] Speaker A: Yeah, definitely. It makes it feel nicer. Yeah.
[00:28:08] Speaker C: And so do you have any other strategies to manage your narcolepsy day to day? Like you said, sometimes you have planned naps, but it sounds like you have a really busy schedule. So do you have anything like day to day at uni?
[00:28:21] Speaker A: I do, but it's. Some of it's very controversial. I mean, if I'm having My plan nap. It's great. Like I will have time. I've got to give at least an hour and a half for just a 20 minute nap. Because you've got the 20 minute nap, you've got the. I like to wind down before it. So I like to meditate. So I tend to meditate beforehand, have my nap and then if I don't wake up to the alarm from the nap, that's where I need this, the room to be. Like, right, I haven't woken up. I've now got 10 minutes to get in my scrubs and walk to a place that's like 10 minutes away anyway. So yeah, fan naps. I do sit and I. Sometimes if I know I'm falling asleep, I'll be pinching myself in lectures, but I don't know if anybody else. You pinch yourself and eventually you get so numb to the fact you're pinching yourself that you keep pinching and it does nothing. I don't do any drinks, I don't do coffee because I'm on so many stimulants and I have done that before and it made my heart rate shoot straight up to about 170. Almost passed out. So that's not a trick to help me drinking lots and lots of water. I say this quite a lot on my page. Drink water, loads of it, by the gallon. Just keep chugging your water because you'll need to pee so often you won't have time to fall asleep.
[00:29:25] Speaker C: That's actually a great tip. I've never heard that one before.
[00:29:28] Speaker A: Well, it works because I drink about 2, 3 liters of water a day, which is obviously good for the stimulants because they do dehydrate you, but I am on that loo about 100 times a day. There is no way I'm falling asleep in my lectures if I need to pee. So I'm glad I'm not the only.
[00:29:44] Speaker C: One that does the pinching as well because I, I don't know why, but I think it's just something like I automatically started doing when I first started experiencing the sleepiness. And even now if I'm really desperate, I will try, but it's like it just doesn't work, does it really?
[00:29:59] Speaker A: No, not always, no. It's the pinching. So I do the pinching and that, that sometimes, you know, gets numb. I've sat there before and gone, yeah.
[00:30:06] Speaker B: That'S what I do.
[00:30:07] Speaker A: I do this again. I get so used to my hands slapping my face that I might as well just be asleep a Pinch under my thighs because that's a really sensitive part. That really hurts. Yeah, that really, really hurts. I don't do that often, but that. Really. Sorry.
[00:30:21] Speaker C: I sometimes worry that, like, people would see the bruises on my arms or, like, legs and be like, are you okay? Like, what's going on there?
[00:30:28] Speaker A: Yeah, I do that quite a lot. I think I have once, like, what did I do? I think once I, like, bit my hand because the pincher wasn't working. I was like, this is a really important revision study session for my exam that's coming up. And I am a nodding dog. And. Yeah, there's just so many things I think narcoleptics try and clutch at.
[00:30:53] Speaker B: So we haven't talked about the hallucinations and that was our topic.
[00:30:57] Speaker A: Yes. Have you got any questions that you want to answer about the hallucinations, or do you want me to waffle on? Because I'm happy to do either.
[00:31:03] Speaker B: What are your experiences with hallucinations?
[00:31:05] Speaker A: Never really nice ones. I think my first hallucination was a really, really, like a really gentle, nice hallucination. I saw a hummingbird in my bedroom. It was. It was just almost like I was coming out of a nap and I just saw this really pretty hummingbird in my bedroom. And then from there, it's just been trauma, and it's horrible. I get a lot of. We always say it's the lady with long fingernails or long fingers, and she's just a dark figure. I know it's a lady. I don't know who it is, but she has these really horrible, spindly thin nails. They're like this, like, huge. And they scratch at me and they claw the inside of my mouth and they claw my chest. And I feel like I've been strangled. And I felt like I've had my feet taken. Like I've been dragged out of my bed. And then I wake up and I'm sitting in my bed and it's just really confusing. It's just a lot of being choked and being strangled and being clawed at. I get a lot of the inside of the mouth. Like someone's clawing at me.
[00:32:00] Speaker C: That's so horrible.
[00:32:01] Speaker A: It's not nice. And again, getting pinned down by my ankles or getting dragged. I did have a. This is gonna be like, I'm gonna trauma dump now. I had an abusive boyfriend. He never done the choking and he never done the thing. But he got to the point where in an argument, he would chuck a glass of water over me. He would tower over me or, like, hit next to me to try and make me jump. And I think a lot of my hallucinations are because of that. A lot of them are really dark and really horrible. And they are people in my room, people standing in my room, people trying to hurt me or like choke me or. It's never nice once. I think the sleep apnea doesn't help because when I do wake up from the shock of being like the hallucination of being strangled, I've stopped breathing, like from the sleep apnea. So I do wake up, like really out of breath. And it's not nice to clarify other.
[00:32:49] Speaker C: Hallucinations, mainly when you're falling asleep or when you're waking up, or both. Or do you also get them when you're having sleep attacks in the day as well?
[00:32:57] Speaker A: No, literally just as I'm falling asleep, it's like a. It can go in and out. So, like I can wake up and I'll get up, I'll walk around and I'll be like, right, I've shaken it off. I'm gonna go back to sleep, I'll get back in the bed and it will just happen again. Nothing I do at the moment seems to shake it off. And they always get worse. Near exam season, because I'm stressed.
[00:33:14] Speaker B: You had the one with the man with the hat.
[00:33:18] Speaker A: Man with a hat. I don't have one with a man with a hat. There's usually a bigger. There's usually. It's either a dark figure, like a guy. It's usually a guy, yeah.
[00:33:27] Speaker B: There's a figure of a dark. There's a figure of a man of a dark figure, which is definitely a man. And he's wearing a hat. A lot of people on forums, when I remember first describing this, I'm on a forum and so many people had the same one and I was like, oh my God. He visits everyone. This man.
[00:33:46] Speaker A: Yeah, I've never had one with a hat. I always get a really odd shaped lady with spindly fingers at the side.
[00:33:52] Speaker B: Of the bed or at the bottom of the bed. The man with the hat.
[00:33:55] Speaker A: Yeah. She's horrible. That's nasty. Absolutely.
[00:33:58] Speaker C: It's the inside of the house that is really getting to me right now. As you're saying.
[00:34:04] Speaker A: It honestly feels like someone is clawing at the inside of my cheeks. And with hallucinations, you can feel it. That's the worst thing. It's so real. You can literally feel it. Like even when I'm being strangled, I can feel them on me and I can feel the weight of them on me. And it's just. I'm like, if I was to tell anybody this, I sound like an absolute crazy person. And that's why I didn't tell the doctors about my hallucinations. But it's so such a narcolepsy thing. Like, you know, you're sleep deprived. It's going to happen, so.
[00:34:29] Speaker C: And I think it's something that isn't given, like, the full recognition either from medical staff or, you know, people in that field because they don't realize, like, the actual physical feelings and emotions that come along with the hallucinations can actually cause, like, traumatic feelings that you're dealing with on a regular basis. And especially for you, it sounds like, you know, in a way it's linked to your experiences with the abusive partner.
[00:34:56] Speaker A: Yeah.
[00:34:57] Speaker C: That must be, like, even more upsetting for you.
[00:35:01] Speaker A: It's never nice. I did get to the point. I was having them every night. I think this was my exam season. And we hadn't had the house redone. So where the stairs led down straight into the front room, and top of the stairs was my bedroom. And every time I went to sleep, my mum used to sit near the bottom of the stairs and just listen because she could usually hear if I was stirring. Because I start. I don't mumble, but I start making like.
Like, I'm trying to scream noises. But, like, it's mumbly. And I have woken up so many times from hallucinations screaming. Sometimes I remember screaming. Other times I don't remember screaming. I just know that, like, the first time my brother ran into my room and was like, chloe, are you okay? Oh, my God, what just happened? And I was like, oh, no, just wake up. And he's like, you were literally screaming at the top of your lungs. What the hell? Second and third time, he would just shout from his room, are you good? And I just shout back, fine.
[00:35:51] Speaker C: And, like, good system.
[00:35:53] Speaker A: Yeah, good system. And then, like, when it happened, quite a lot, he just stopped asking me. And in the morning would be like, you screamed again? I was like, yeah. But my mum, she sits at the bottom of the stairs and she would try and wake me gently. She's not going to be like, wake up. But she would try and wake me so that, you know, and she would sit with me until I fall back to sleep. And when she sat with me, I would have no other hallucinations in a uni. My mum can't sit with me. She can't calm me down. And I haven't figured out how to calm down and get into that space. Where I'm no longer petrified of what I've just hallucinated.
[00:36:29] Speaker B: Yeah, I know you have a dog. We were talking about this earlier, before we started. You have a dog, but your dog is not with you at university.
No, no, no. When you're at home and when you're at home and you have the dog, have you noticed that he can sometimes help you after you've had a hallucination or when you're going into it or something by just looking at him and recognizing that he actually isn't upset or that hasn't helped, or.
[00:36:55] Speaker A: I don't hallucinate when he sleeps with me, but I do have a cat that sleeps with me. My little tinker Bella always sleeps with me, and she always sleeps on my chest. And the one thing I will say is I totally believe that animals know, and they just have this sick sense they. They know stuff. And I left my weighted blanket. I swear by my weighted blanket for my restless legs. Absolutely swear by it. And if I don't have it, I can't sleep because I need the weight on my legs. And she just knew. And instead of sleeping on my chest that night, she put herself on my legs and she stretched herself out. She's quite a fat cat. Okay, so she weighs a bit. So she stretched herself out on my legs, and I was able to sleep that night because she slept on my legs. So she tends to the healing. Yeah. Doesn't help with my hallucination. She's not learned that yet, so she's slacking a bit. But she does help with my restless legs.
[00:37:46] Speaker B: At least she's off of that. I'm gonna have to tell DJ about the restless leg thing. So he knows that's where he's supposed to be.
[00:37:53] Speaker A: Yeah. Start training them early.
[00:37:55] Speaker B: He helps with the hallucinations because when I ever. If I come out of it, I am still. When you still try to determine whether whether this actually was a hallucination or it wasn't. Like, when you. You haven't realized that you're completely awakened. Was that a reality or was it not? Or did that just happen and you're still, like, in that panic? I look at him, and if he's absolutely calm, I know that this never happened. This is. This was something that my brain just, like, made up. But if he looks like his ears are up and he looks like, really, like, panic, I know that something else is happening.
[00:38:26] Speaker A: Yeah, yeah. They are usually good indicators.
Sometimes I get, like, just auditory hallucinations, so I can. It would always be when I Put my head to my pillow and it's like, something's in my pillow. Like, the auditory ones are usually really nice. So when my nan passed away, all I could hear. She used to fall asleep to the radio. All I could hear was that guy's voice, the radio. And it was just really nice. It was really comforting. It was quite recent, after she passed. And it was one of the nicest hallucinations I've ever had because, you know, she used to fall asleep to that. I'm about to fall asleep to it. It's a nice hallucination. It was just. I felt a bit more, like, connected to my nana and she was my best mate, so it was great. Other times, yeah, I just hear music. I'll put my head to the pillow and it's music. Songs I've never heard before in my life, but I recite the lyrics to you. I could tell you the melody. And then when I try and search for the song doesn't exist. It's really oddly the same.
[00:39:20] Speaker C: Yeah.
When I first started experiencing that, I was convinced that my brain was tuning into radios and that I was hearing radio stations. Because I was like, I can hear the exact song. I can hear the person talking. And I would, like, tell my mom, this is when I was a teenager and probably before I was diagnosed. I was like, mom, I, like, my brain is tuning into the radio. I can hear everything. We need to find the station. And she'd be like, I don't think that's happening to you, Liz. But, yeah, it's such a weird thing when you hear it so vividly in your head. Oh, yeah.
[00:39:53] Speaker A: I tell you the melodies and everything. It's like, it's not.
[00:39:57] Speaker C: Sometimes I write, like, great songs in my head and I'm. When I'm having these hallucinations, I'm like, that could be a real hit. And then I kind of come to you, like, no. Can't remember any of it.
[00:40:07] Speaker A: Yeah.
[00:40:08] Speaker B: The most beautiful music. Like, my. Both my sisters sing. They've got amazing voices and I. But I only get them when I'm really, really sick. If I'm really, really, really, really sick, I get. That's when I get the song ones, and it's like angel singing. It's the most. The most amazing singer in the world. Doesn't compare to this. To the voice that I'm hearing.
[00:40:29] Speaker A: Yeah. Definitely.
[00:40:30] Speaker C: Must be my singing voice.
[00:40:32] Speaker A: Caroly, I was about to say. I think it is.
Yeah, they're nice. I do forget as well. I love that, you know, the hallucinations aren't the nice part, but the vivid dreaming, the dreams I get are. They can sometimes be of the same nature of the hallucinations. Not very nice. But the majority of my dreams are really nice. And it's like watching a flu and trying to say that to people. Like, I dream nearly every night, and I can sometimes control what I do in my dream, but it's a full movie. Like, I can tell you the start, the middle, the end, what happened. Like, the whole plot. I can tell you how I got from one to the other. It's like, I've watched a Netflix series, and it's great. And they're like, oh, I barely remember my dreams. I don't think I've dreamt in, like, three weeks. And part of me is like, yeah, well, have narcolepsy. That's the only good bit.
[00:41:15] Speaker C: I mean, I would say my dreams are definitely a mixture of nice sometimes, but mostly just, like, the weirdest things or sometimes so freaky. But it's like, I don't even react sometimes when they're horrible anymore. Like, I'll wake up and be like, oh, yeah, I just had a dream that so and so was beheaded, and then they were hit by a car. And, like, my mom's, like, looking at me like, are you all right? And I'm like, yeah, it's just, you know, just another dream.
[00:41:41] Speaker A: Yeah, I mean, I can't watch. I can't watch any horror movies. I. I do know my triggers now for bad, Bad dreams and bad hallucinations. And I really wanted to watch the Jeffrey Dahmer series. Like, really, really, really wanted to watch it. And I watched the first episode, and I almost punched my boyfriend's lights out because I thought he was trying to, like, strangle me to death. Because, you know, Jeffrey, you know, strangled some of them. I was there, and I don't know who he is. He's a serial killer. Yeah, it's a series on Netflix about a serial killer. And he, you know, was a very nice person. Not a very nice person. And I just basically hallucinated all night that my boyfriend was trying to kill me and he was trying to strangle me. I kept hallucinating him on top of me, just trying to strangle me. When I woke up, I was like, you're such a douche. Why would you do that? And he was like, what? What's going on? I went downstairs for a smoke. I haven't even been in the bed. Yeah, I can see why we're not together anymore, because I'm Absolutely. Crackers. We're very interesting.
[00:42:41] Speaker C: We're very interesting sleeping buddies, people with narcolepsy. Like, all kinds of things happen that you just. You don't tell the other person fully what you've experienced. But they get snippets like you're shouting at them or like, yeah, your legs are moving around in the bed.
[00:42:56] Speaker A: Yeah, I think I screamed once. It just so happens that the cats are having a fight in my room at the exact same time. And I screamed from this hallucination. And it was the second time he slept around mine at the start of the relationship. And I obviously let out this big scream and then just went back to sleep. And he woke up going.
Jumped out of bed, threw a pillow and was like, what? What? What are we screaming at? I was like, what are you screaming? And he was like, you just screamed? And I was like, did I?
[00:43:24] Speaker B: No.
[00:43:24] Speaker A: Like, sometimes I don't remember doing it. I was like, screaming and woke me up. And I'm like, why are you screaming? What are you screaming for? And he's like, just screamed. And I was like, sorry, darling, my bad.
[00:43:34] Speaker C: I had the same experience where I was staying at a friend's house, and there was four of us sleeping, like in the kind of a big room. And I think I must have screamed but then not realized. And then I just woke up and like, all my friends were screaming. They were like, liz, like, why are you screaming? And then we, like, couldn't work out what happened. I was like, I don't know. Like, if something happened that's just so disorientated that, like all of us were screaming and no one knew why.
[00:43:59] Speaker A: Yeah, it does throw you off a little bit.
[00:44:01] Speaker C: Yeah, sometimes.
[00:44:02] Speaker A: Good. Yeah. There's times like the hallucinations, one of my. So my first ex boyfriend, and when I first knew I had, like when I was like 17, 18. This is the not very nice one. We don't like him. He. I'd hallucinated that he'd come back and I was having a nap. And he came back from work, just told me he was gonna pop out to the gym, he'll grab some dinner on the way home. And then, like, I can cook him dinner. I was like, yeah, sweet. You know, I need to carry on napping. I'm exhausted. So when he did actually come home, I asked him how the gym was, and he was like, what do you mean? I haven't been to the gym yet. I was like, but you.
Because I've only just finished work. I've only just got in and it was like, oh, my God. I just, like. So that was a hallucination, didn't actually have a conversation with you, but you're so fully convinced about that conversation, fully convinced it happened, that you're like, how do I not look like a crazy person and be like, yeah, I'm just in a conversation with you on my own?
[00:44:59] Speaker C: Yeah. It's so weird. When I was living at home, I used to fall asleep on the sofa and then I would think I heard my mum coming home and, like, haven't had. I thought I'd have a conversation with her and then I'd fall asleep again, I thought. And then she'd come home and then I'd be like, referring to something in the conversation we had earlier and she'd just be like, what are you talking about? But it's so real. I also used to hallucinate that I'd woken up and had dinner, but I hadn't actually had dinner. So then she'd bring food and I'd be like, but I've eaten. It's just the weirdest thing.
[00:45:34] Speaker A: Yeah, definitely. It does confuse you a lot. I think that's the hardest part, is that you do have to then sit there and nitpick. What is. What has actually happened? What was a hallucination? Obviously the scary ones, the people with the long fingers. Well, I know that's not real. If it is real. Well, my parents letting into my house at night, but, you know, I know that's not real. Whereas the ones where it's, oh, I've just come home and have a conversation with my mum, or I've just come home and had a conversation about dinner and, you know, they're going to be back in a bit and then when they come back, it's a completely different story. And none of that's actually happened. Yeah, your whole sense of like, oh, my God, reality is a little bit. You do feel a little bit out of place. You feel a little bit like, oh, okay, yeah.
[00:46:15] Speaker B: Have any of you had a hallucination where you gained strength?
[00:46:19] Speaker A: Gained strength?
[00:46:21] Speaker B: You know, you can have hypnopompic and hypno hallucination. So there's once where I had one where I gained strength. And I've met one other person with narcolepsy who also this happened to and she threw her uncle across the room when she had hers. So when I had mine, I had fallen asleep and my sister came to my room when I was still living at home. My. Obviously my version of the story and their version story is Completely different. But my version of the story is that I was sleeping in my room, which I was. And they came into the room, and my sister said that there was a flying rat. And then I was like, oh, my God. And then I started to run out the room. And for some reason, she was running really slow. And I could understand why she wasn't running faster because we needed to get away from the flying rats. And all I can remember was Liz is laughing at Liz.
And all I could hear was my parents going, oh, my God, she's trying to kill her. She's trying to kill her. And then my dad came and he separated me from my sister, and then he pushed me towards the room with the rat and took my sister away from the room with the rat. And then. And it was hard for him to separate us. And then when he finally separate us, and they got. They got her back or whatever, and then they were going, oh, my God, she's trying to kill us. She's trying to kill her. And. And, like, really, like, thinking that I was gonna kill her. And then I was crouched down on the floor, and then I was just, like, really, like, traumatized by the whole experience. I just couldn't understand why they were pushing me towards the room and why they were pulling her away. And their version of the story is that none of that. She went to the room to wake me. She woke me. I jumped up, and I started attacking her. And then dad had to separate. And that's when mom and dad were screaming that you're trying to kill her. And they had to separate us. And then I came up with a story about this flying rat. And I was like, that is not what happened.
[00:48:08] Speaker A: Yeah.
[00:48:09] Speaker B: When I told the neurologist, she said, yeah, you had this upon waking up. So it was that type of hallucination. Upon waking up, when they touched you, you were in the dream. It came out of it. It started to act it out.
[00:48:21] Speaker A: And.
[00:48:21] Speaker B: And then something goes. You gain strength. And that's the reason why your parents thought you were trying to kill her. That's why you had so much power.
[00:48:28] Speaker A: Yeah.
[00:48:28] Speaker B: In that moment. Yeah. I've never had one since that. I gained strength the way I did that that day.
[00:48:33] Speaker C: Wow.
[00:48:34] Speaker A: Yeah. That's almost like sleepwalking, when you act out something.
[00:48:36] Speaker C: Yeah.
[00:48:37] Speaker B: Yeah, I do. I do that with. With the REM behavioral disorder. Sleep walking, Sleep eating, Talking in your sleep, acting out your dreams.
[00:48:45] Speaker A: Yeah, my sleep all the time. And I wake up to me saying the most craziest stuff as well. Like, I think sometimes like on the subject of rats, I think I did say the rat's hair is blue. When I woke up once and I was like, what did I just say? And I don't know. I woke up the other night because I was talking about my granddad to my mum and my dad and I think in my sleep I woke up and I was like, don't forget to get granddad's suit. And I was like, what have I just said? Wake up saying really random things. Like I think sometimes my ex boyfriend used to think I was having conversations with him and I'd wake up saying something and it would be legitimate and it would sometimes make sense. So he'd answer me and then I'd turn around and be like, what? What? Why have you said like what? What are you talking about? And he was like, you just said something. And I was like, oh, like, why.
[00:49:29] Speaker C: Are you making me up? Like I'm trying to sleep.
[00:49:31] Speaker A: Did you know I was asleep? Why are you talking to me? I'm asleep.
[00:49:34] Speaker C: Do you guys ever get it where you're dreaming and your dream has seemed really real? They like you thought you'd had a conversation with someone and then you wake up and it's such an ingrained memory that you can' out whether it's actually happened or whether it was a dream all the time.
[00:49:49] Speaker A: I had that when I started uni. Me and my flatmates have moved now because something to do with like they didn't do a evacuation plan so I had to move anyway. But my flatmates and I didn't really gel and I think it was probably about the third weekend and I hallucinated that I was taking a nap and they walked into my room even though I locked the door. I know it wouldn't have happened, but in my head I'm like, oh my God, this has happened. And from a night out they've walked into my room and started having a go at me saying like, I'm boring and you know, I don't do this, I don't do that. And really, really having a go at me and we had a full blown argument and it felt so real. And then the next morning I was like, okay, I know this has happened. If I walk into the kitchen and it's really, really awkward, you can hear like a pin drop. But if I walk into that kitchen and they act like nothing's happened, I know that was a dream. So I kind of walked really sheepish into the kitchen, sort of grabbed my milk to make myself tea and, and they're like, so how was your night, Chloe? And I was like, there we go, didn't happen. That is the confirmation I needed.
[00:50:50] Speaker C: It's so weird, isn't it, having to look for external clues to try and work out if the thing that you think has happened has actually happened or not.
[00:50:58] Speaker A: Yeah, yeah, definitely. Yeah. It was really, really odd.
[00:51:05] Speaker C: And it seems like at uni, obviously you do have a really busy lifestyle. How have you actually found it, managing all that and like going out and, you know, the pressures to socialize all the time.
[00:51:17] Speaker A: It was hard at first. Like, I won't lie, it was really hard. I think going from being at home. My routine was, I work a full time job, 9 till 5, I come home, I have dinner, I go to sleep. There wasn't really much more I did except on, you know, like the occasional day where I would go out with family or friends. So coming to uni, where it's, you know, I do my own. My mom cooked for me because I was exhausted from work, so I would sleep. So I've got to come home from uni, I have to cook, I have to meal prep in my head. Like that doesn't work very often. And then I have to plan my own, like shopping my washing and get into lectures, making sure I've got all the stuff, the content in the lectures, the content for exams, for clinic, extra clinical time. And then I was doing like, you know, I want to make friends. So being an older student, it's a little bit harder because I don't gel with the 18 year olds, I don't gel with the 19 year olds. I'm trying, but we don't have anything in common. I'm a Hannah Montana and a Disney Channel generation and you don't even know who Hannah Montana is.
[00:52:11] Speaker C: Me and Caroly, I was like, no.
[00:52:13] Speaker A: But like the 18 year olds, we're like, yeah, we met Hannah Montana. It wasn't really big, you know, And I was like, we're not the same people. I'm sorry, it's never gonna work. Like, I don't get along with you. And it was just really hard at first. I think I tried to go to the socials and I know some people do drink on their stimulant medication, but I choose not to. I've read the side effects and I don't want that. I don't want to deal with those side effects. You could end up in hospital. I don't think it's the smartest thing to do. And I'm fun enough about it. I will hands up say that I can not drink and have the exact same fun, if not more fun. But for the uni drinking, like, culture, that isn't very easily accepted. And I spent the first term, I think, you know, really putting myself out there. I have really bad social anxiety sometimes and I was really putting myself out there. You know, I'm Cardiff, I don't know anybody. I'm a older student and there's people here that are going to get along a lot better than me. And I've also got narcolepsy, so, you know, I'm putting myself at disadvantage anyway. But I'm still going to try. You know, I would. I would first tell people, you know, they'd offer to buy me a drink. I'll be like, oh, sorry, I don't drink. I'm just drinking lemonade. And then I noticed that's the conversation over. Nobody wants to talk to you if you don't drink. And they don't want to invite you out if you don't drink because you can't get drunk with them. And you can't have a laugh about being drunk. You can't have a laugh about being silly or something silly that you did when you were drunk. Like, I do get it. I've been there, I've done that. I've done the whole drinking culture thing. And, you know, you can't do a pub crawl or pub golf if you can't drink. So I think I just, before Christmas, I was like, right, I've got no mates because I don't drink. Everybody thinks, you know, she's boring because she don't drink. And they're not even bothering to get to know me so bad. So I gave all the societies a really big break, you know, they wouldn't have remembered who I am anyway. There's so many people that go to them. I just went back after Christmas and I get a bottle of wine, really cheap wine, I'm not gonna waste my money, and I tip that wine out and I get a bottle of like, no seco or fake wine, because it has that alcohol smell, it has the alcohol taste, it's just not got anything in it. And I will tip it into the bottle that I've just poured the real wine out of. And that's what I take to the pre or the thingy with me. So when there's drinking games and it's like down a bit, you drink. Even if they went to taste my drink, it just tastes like it has got that tang of alcohol in it. So they wouldn't know any different. And they're probably already too drunk to really notice. But it was the. I can't drink because of my meds. I'm not going to compromise my meds and falling asleep 40 times a day to drink with you and make friends.
[00:54:38] Speaker C: Yeah.
[00:54:38] Speaker A: But if it takes me faking it a little bit just for you to want to get to know me, I'll do that. And I did find my friends, and I've luckily found I've got two really, really good mates and they're really lovely and they are used to having mates that don't drink for their own personal reasons. So when I don't look like I'm drinking a lot or I just go with my wine and then I go, oh, I don't want any more. I'm just going to get lemonades. When I'm at the bar, they don't question it. They don't ask any different. They don't ask, why are you not drinking? They're like, yeah, that's fine. Like, you're good. Like, I don't really like to drink anyway, so. And it will get to the point where I will say, I don't drink, but I'm not gonna put myself back in that just yet. Like, that's interesting. Like, studying and all of that. You can, you know, it's not easy, but, like, you study, you know, you gotta go to your food shop. Your food shop. There's nothing fake about it. There's nothing that you have to put on a rouge for. But the whole going out, that's the hardest part with narcolepsy. And also, you know, everyone wants to go to the pub. I am knackered.
[00:55:37] Speaker C: Yeah.
[00:55:37] Speaker A: Do I want to miss, you know, am I gonna get fomo? Am I gonna miss out? You know, it's the biggest time to try and make friends. And I want to stay at home and nap because I'm knackered. Like, it's a really big balance. And juggling it is probably been the hardest thing with uni and narcolepsy.
[00:55:58] Speaker C: So one of the questions that I really like to ask everyone on the podcast is this. If you could press a red button and completely get rid of narcolepsy from your life and have never experienced it, would you do it? And why?
[00:56:14] Speaker A: No, I wouldn't. Again, I think there's so many different ways you can view having narcolepsy, but it has made me have only friends that are good for me. When I first got narcolepsy and I was going through the whole Diagnosis process. I lost all my friends and it came to the realization they weren't, they weren't friends. It's put really good people in my life and people that have a genuine care for me and want to look after me and want to help me and they, they care for my well being, which is the nicest feeling ever. And I wouldn't be at Cardiff doing what I'm doing if I didn't have narcolepsy. I would be probably as a vet and I don't know if, you know, vets have the highest suicide rate.
[00:56:52] Speaker B: Really?
[00:56:52] Speaker A: Yeah. And it's quite an intense job and I commend anybody that can do it.
[00:56:57] Speaker B: But as an animal doctor, animal vets.
[00:57:02] Speaker A: Have the highest suicide rate among most of the occupations that you can go into.
[00:57:06] Speaker B: Do they know why that is?
[00:57:08] Speaker A: No, I don't know why.
Again, a lot of it happens at uni as well. I know that the uni students have a really high suicide rate and we had to have a mental health briefing in one of my uni interviews because I was going to go into veterinary and then I changed my mind last minute about mental health and how we'd cope with mental health problems because their suicide rate is, is worryingly high. So, yeah, it would have steered me down that path and my life would be completely different. And I very much appreciate how everything is at the moment taking up yoga because I think it helps my narcolepsy, the stretching helps the restless legs and that's just made my mental health so much better. Like I'm in a really good space. And I think I do have narcolepsy to thank for that. And I think the first, you know, you go through your grieving stages, but once I've come out of all my grieving stages, I realized that it is my little superpower. Like I feel very much that I'm able to help others because of it. Blunt about it and you'd feel very misunderstood. And I feel like I'm a person that I can show that I'm understanding and I can help and I can take something off your plate because I don't know if you've heard the spoon theories. I'll use one of my spoons to help you. I understand you've, you've used all your spoons and you've still got so much to do and you just need a little bit of help. Like I get it and I feel like narcolepsy has made me a better person in the short term. Yeah, I'm quite thankful for it. I guess despite all of it, it's obviously downfalls, but I am grateful. I've got it.
[00:58:39] Speaker C: That's great. Thank you so much for. Yeah, telling us about your whole journey and everything that's going on for you at the moment. And obviously we want to hear about your. Your narcolepsy Instagram page and all your social media stuff. So time to share with everyone.
[00:58:56] Speaker A: So narcolepsy, SSE or Sleep Solves Everything is just a page where I put my unfiltered comments. My sarcasm again. If you've ever seen Chandler from Friends, I'm pretty much him. I deal with everything through sarcasm and comedy, and it's just the stuff you really want to say to people or you just. You really wish people understood or the nitty gritty things that people.
Pinching yourself. I haven't seen any narcolepsy pages. Admit that everybody does that. And yet when I upload a thing about it, everyone goes mad. Like, oh, my God. Yeah, I pinch myself to try and stay awake. Like, it's the stuff that we all do but don't talk about. That's my page. It's just, you know, we all know we do it. It's the elephant in the room. So I'm gonna make a post about it.
[00:59:42] Speaker C: Amazing. I love that.
[00:59:44] Speaker B: Yeah. So everyone go and check out her page. Sleep Solves Everything.
[00:59:50] Speaker A: Awesome. Thank you, guys. Thank you for having me. It's been really nice.
[00:59:54] Speaker B: Yeah, it was nice to speak to you and to hear about your story and talk about hallucinations and everything else in between. If there. If there was one thing you wanted to be, the overall takeaway from this interview, what would you want it to be?
[01:00:11] Speaker A: I think for anyone listening, narcolepsy, how you view it, is all mindset. And it can either be your superpower or it could be your kryptonite. You just have to choose.
You won't have to stick with it and work with it. Wise words, wise words. No worries.
[01:00:29] Speaker C: Like I said at the end of the episode last time, happy napping, everyone.
[01:00:33] Speaker B: Happy napping.
Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
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