Episode Transcript
00:10 - Kerly (Host)
Hello, welcome. You're listening to season one of Narcolepsy Navigators brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerly Bwoga, the founder of Naps for Life Narcolepsy, and welcome to our stories. Hi everyone, and welcome to Narcolepsy Navigators. My name is Kerly, I'm your host
00:48- Liz (Co-host)
I'm Liz, your co-host for today, and we both have narcolepsy type 1.
00:52 - Kerly (Host)
Today we're joined by Christine. She is from Ireland and the topic for today is mental health. Welcome, Hello, I'm good.
01:02 - Christine (Guest)
How was your week? Yeah, no, it's been good. I've just been back to work after the Easter break, so that's a short week, so that's always a plus.
01:12 - Liz (Co-host)
Definitely, Kerly. How has your week been?
01:15 - Kerly (Host)
Not been good week. My epilepsy has been very bad. I've been spending most of the days in bed, very, very exhausted and probably being able to only do one hour of anything worth accomplishing every day. So, yeah, it's been rough.
01:29 - Liz (Co-host)
I know, is that because of lack of sleep or anything triggered it in particular?
01:34 - Kerly (Host)
lots of vivid dreams. Yeah, abductions and torture and lovely stuff. Yeah, I don't know. A friend of mine was saying that maybe I over pushed myself doing the coloring book and then college, and then I started the wig course. I was just like a lot and trying to keep up with my part-time job, like a lot just all at once. And then we had the Easter break and my body was just like that's it watch, and then it just collapsed and then it just needed to like sleep for a week, to like yeah, I think maybe that's what happened it's like the adrenaline or something like once you stop yeah, I find that I get sick or just literally cannot stop sleeping.
02:14 - Christine (Guest)
So, yeah, no, I totally relate to that as well what about you?
02:18 - Kerly (Host)
how was your week?
02:18 - Liz (Co-host)
yeah, it's been okay. I've also had a funny couple of weeks. So I started a new job a while ago, like I mentioned, and I increased my medication to keep up with the demands of the job. But a side effect of the medication for me is anxiety. So I had an almost like panic type thing on the train the other day which I've never experienced before and I've been so weird about getting on trains since then, which is so annoying. But yeah, it's been okay. I'm breathing my way through the train journeys, which are absolutely fine in reality. But yeah, also had a few days off last week and just napped constantly, which was lovely but also not the best use of my time. But there you go. Good to have a break. So, yeah, it sounds like both of us are having a bit of burnout and recovery at the moment yeah, definitely.
03:06 - Christine (Guest)
It's like when you get a break and a day off as well, you want to do something fun, not sleep. It's just like I feel like sometimes I'm like, oh, I've got a day off, but all I've done is sleep and not like done something super fun that I actually wanted to do. And so, yeah, burnout is definitely difficult, because I feel like we encounter it quite often because of the exhaustion and you were saying, carolee of like doing too many, too many different things, but it's just like our energy levels are just so like I don't know, like we just have to. I think that's it's like you're caught in a rock, in a hard place where you're like, oh, like I really want to do as much as I can while I'm awake, but then, if you do, like even the tiniest thing that just pushes you over the energy, it's just like, oh no now we're over it.
03:53 - Liz (Co-host)
Oh, it's the worst, it really is it's hard, but we've all made it today, so that's a positive.
03:59 - Kerly (Host)
We're all here that's true, but let's dive in so, christine, do you have narcolepsy type one or two, so I have type one, which is narcolepsy with cataplexy.
04:11 - Christine (Guest)
So I originally had was diagnosed with type two, but then they realized that the cataplexy was actually in my jaw, not my legs, so that's why they didn't pick it up.
04:21 - Kerly (Host)
Oh, that's interesting. I haven't heard that one before.
04:25 - Christine (Guest)
Yeah. So I said to the consultant like when I laugh I can really struggle to get my head up, and I feel like this weird weakness and like, while some things are really funny sometimes, I'm like I don't really understand why I can't pick my head up. And he's like, oh, he's like that's your cataplexy. So he was like it was never picked up on my legs because they put that little sensor on your legs during your sleep study.
04:49 - Kerly (Host)
But they yeah, that's not where it was so yeah that's so interesting because that's why they put it on our legs. I always wondered about that.
04:58 - Liz (Co-host)
I don't think I had. I don't remember having any electrodes or whatever they were on my legs at all.
05:05 - Christine (Guest)
Yeah, yeah sometimes take them off, like after the night time, so you might not have had them on the full time, so you might not have noticed or you might not have had them on. There's so many different variations of sleep studies.
05:19 - Liz (Co-host)
I feel as well yeah, definitely, because my cataplexy is definitely in my face more than any other part of my body. Oh, it's really attractive when I can barely keep my eyes open when I'm trying to tell a joke, and it's frustrating too because you're like it's really funny. I just can't get the words out like if only they knew what was going on right now. They would love it too, but there you go so yes, I have round.
05:46 - Christine (Guest)
Yeah, in conclusion, I have type 1 narcolepsy with cataplexy and what year were you diagnosed?
05:52
so I was diagnosed in December 2017. I was actually initially diagnosed with sleep apnea in 2014 and the initial sleep study, but after, like the CPAP and all didn't work, I went back and he was like I think the sleep study could be done again, so they sent me to Glasgow and then they eventually got the correct diagnosis then. So probably I was experiencing symptoms since I was about 16 or 17, so the symptoms had been there for nearly 10 years by the time I had been finally diagnosed correctly, wow.
06:26 - Kerly (Host)
So they sent you from Ireland to Glasgow to have the test.
06:30 - Christine (Guest)
Yes, because in Northern Ireland there's a very small sleep department and there's only like two consultants at the minute, so they didn't have the capacity to do the sleep study here, because I think maybe only once a month they did them and because it was such a backlog and he knew like mines had maybe been like on the go for a long time. Um, he was like we're just gonna outsource this and he wrote a letter to a colleague in Glasgow and they flew me over and got it done. So, yeah, I think it was just a resource.
07:05 - Liz (Co-host)
That's really good. How did you feel when you got your diagnosis?
07:09 - Christine (Guest)
I'm not crazy. Basically, like a weird, you go through a really like strange set of emotions where you're like relieved, you're like I knew there was something wrong with me. Now there's an answer, but then that kind of turns on its head and you're like, oh no, there's something wrong with me. There actually is something wrong with me and you know it's incurable. And then you kind of just go through all the whole stages of grief. I feel like you're you start looking back into your past and you're mad and you're like that's what was wrong with me, like, and then you're sad. There's just so many different emotions. I feel like you go through at different stages, like initially it's like oh, and then it's like you just over time, go through all the like stages. I guess um did you did you feel?
07:55
did you feel the same or?
07:56 - Liz (Co-host)
yeah, absolutely I think. Yeah, I was so relieved when I got the diagnosis, like you said, because it kind of validates everything you've been experiencing. And then, as soon as the relief was gone, it was just like sadness of like, oh great, and I remember being given a leaflet which I just read in the car on the way home was like, oh okay, this is my life now. Yeah, and I kind of think as well and I've mentioned before on this podcast, I'm not sure that I've ever really left that grief cycle.
08:26 - Christine (Guest)
I think I just go in different in and out of different stages all the time yeah, I would definitely say that, especially when you are having a particularly difficult time with symptoms, like recently, I've just been feeling just really like, yeah, just like, and Matt, like kind of annoyed again, like, oh, I'm doing all these things and I still, I still, at the end of the day, you still can't cure it that kind of way. So, yeah, but yeah, it took a while to be diagnosed, but I suppose I'll wait for your questions because I don't want to, I don't want to say, like the story and you're like I'm just going ask that we like the free flow.
09:05 - Liz (Co-host)
It's good.
09:05 - Kerly (Host)
It's good okay yeah, I was really relieved when I got diagnosed, because it was so bad at the time and so I knew something was wrong. It was just finally, oh, finally, we've got an answer and. I didn't really go into a stage of grief, I don't think, because I was just like so happy that I had something to say back to people, like when they would say, oh why are you doing this? Like I have narcolepsy, so huh so yeah, so like that was really um.
09:33
And then whenever I go to the hospital, there would be like a group of people like I can't remember how long this was for, maybe for a year, but every time we'd go there'd like be lots of students. They'd all like be in a circle like taking notes. Everything I said, celebrity or something, was really like yeah that's kind of cool yeah.
09:55
So I didn't quite mind that. It was just like quite fascinating to me. Like why were they so like amazed about everything that was coming out of my mouth? And it's just, you just go like every few months and talk to the doctor about what happened three months before and then go again and talk to him about it's really weird, but every time they'd just be like taking notes and they were just like so fascinated it's funny because there's loads of things that happen to us in the daily that we just get on with.
10:23 - Christine (Guest)
But then if you tell someone else, they're like that isn't normal. I remember coming into work and telling people like, oh, I thought someone broke into my house last night and then the night before I thought someone was trying to kidnap me and they're just like. I'm like but I'm sure everyone has them dreams and they're like no extreme silence you know, before you're diagnosed you're like.
10:45 - Liz (Co-host)
People must have thought I was like, absolutely crazy yeah, I legit used to think that I could see dead people, because I would see so many people walking into my room at night. I was like I've, I can see ghosts.
10:58 - Christine (Guest)
That's what it is oh it's, it's so strange. Like when I was younger as well, like I would have been saying to my mom like I think our house is haunted, like I, you know, I really think that. And she'd be like no, like no, this was a field before the house was built here. No one was here before us. I remember turning on the lights and stuff and maybe like convinced, um, but obviously that must have been the start of like the hypnagogic hallucinations, but I just thought I was some sort of haunted child. What's wrong like this is so strange, and all I watch is Disney.
11:35 - Liz (Co-host)
It doesn't make sense oh, so true, our brains screw us over oh like I don't know what.
11:43 - Christine (Guest)
I've seen Ghostbusters recently and I was like I can't even look at that image because if I look at that I'm gonna log that for a night you know what?
11:52 - Liz (Co-host)
I've been watching? Game of Thrones, which is so gory, and I've actually not had any nightmares, so I don't know like it's so strange because sometimes, like you say, I'll literally see a picture of something and that will go in my head, but hours of Game of Thrones, nothing, wow.
12:09 - Christine (Guest)
Funny you say that, yeah, I never. Gore doesn't seem to feature. But it's all like about people trying to like get on top of me or like strangle me, but no one's ever tried to knife me. Maybe it's because it's swords or something I'm like, ah, that's not going to happen.
12:28 - Liz (Co-host)
Yeah they're not scary. Poltergeist, on the other hand, terrifying.
12:32 - Kerly (Host)
You have time left. You're both really young. Wait until you've been stabbed a few times. Bury the lie. Oh my God.
12:40 - Christine (Guest)
No.
12:43 - Kerly (Host)
Yeah, covered in snakes, no, I've had the snakes.
12:46 - Christine (Guest)
I've had the snakes, I've had the bugs. I've had like earthquakes, fire, like there's so many. It's all like natural, not all of them, but there's a lot of natural disasters involved, in mine as well the knife thing was not bad.
13:02 - Kerly (Host)
It's bad. The knife thing is worse than being's bad. I think it's the knife thing's worse than this. Being stabbed is worse than being shot, definitely.
13:09 - Christine (Guest)
I love how we're talking with this all yeah we know we've been through it a few times we're like in some sort of criminal gang. It's like, oh no, we are, we just have a really crazy brain very vivid imagination.
13:25 - Kerly (Host)
Yeah, definitely can you share with us your journey to being diagnosed with narcolepsy and how has this condition impacted your daily life and mental health?
13:37 - Christine (Guest)
okay, so I probably would say that I first felt abnormally tired when I was about 16 or 17. I was at school and I just would have came home from school and slept until dinner. My mum would be like, waking me up, like do your homework, go to bed the next morning. It was just impossible to get me away. She just would have been. And the thing is my mum would have been, quite like you know, would have made my breakfast and things like that, like I don't know where I would be if I didn't have her in that aspect of my life, because she would have come in, been like okay, christine, time to get up. She would have had to have woken me an hour and a half before my brother, my brother would literally wake up 20 minutes, rock out, get onto the bus he would be so fast and getting ready. I would fall asleep while putting my uniform on. She would come back in and be like are you ready for breakfast? I'd be asleep again and she'd like literally like, poking me, like right, and then I'd be eating my breakfast and I'd fall asleep while eating my breakfast. It was just a constant like and she'd be like Christine, what, what are you like? You know like, why I don't't understand what's taking you so long, and I'd be like I couldn't understand. And she actually took me to the doctor to get like bloods and things done. And back then I just feel like if the doctor was like no, your bloods are normal, you're just young, you're just, you're a girl who's growing up All teenagers get tired and my mum would be like okay, but okay, but like you know, she didn't know what else to do. Um, and especially when, like a medical you know medical professional was like there's nothing wrong with her, she was like right, well, there's nothing. You know, I don't know what this is.
15:16
And then basically in school, I got through school I don't know how I think it was, because I had that routine and I had her to kind of help me through just the basics of life. And then when I got to university, that's when things got real rocky because I had no routine anymore. I only had 12 hours of class, which sounds good, but like it was a law degree, but so it was all this reading, like constant, constant reading, um, and I would say that's when my mental health really I declined, because I had never before thought maybe I won't pass this. You know like maybe I won't actually scrape through, because school I always had a kind of like self-worth issue that I always thought that like, even if I got really good grades, I still didn't think that I was smart. But it was because I was overcompensating all the time, like I was doing double the work. I might have got the A, but I was so stressed, I just felt like it was just gonna slip out of my fingers. You know like I just felt like I was. You know my mom would be like you're so stressed, like, and then you get the A's. I don't understand, but it was because I had to put so much effort like all of my being and to being, like having everything done, all the dots you know, lined up.
16:30
And then in university that compensation was just really scary because I didn't. The format was different. I, you know like I only had 12 hours of class. So the structure I think once I left that home life routine, my sleep was going to get started and getting worse, but the narcolepsy symptoms were becoming harder and harder to mask. And then in lectures I'd be nipping myself, I would be writing notes and then look just like, wake up and it was an automatic behavior. I was writing gibberish and then it's like what's the point going to these lectures? So then I'm finally here.
17:05
I got quite stressed and I thought, right, this was the third time I was going to go back to the doctor. I was like, right, I'm taking my lecture notes with me because I don't think he's going to believe. Like I don't know how else to explain how exhausted I am. And I said to him look, this is not an iron issue. I like I don't know what else, like I've been tested for all this. And I said, like the only way I can explain to you is to look at my lecture notes. I was like I am falling asleep. It's not my eyesight, like all these tests. And he just looked at it and, like I don't know if he thought I was having a stroke or something, he was, he sent me to neurology but that was the start of the referral process. But that was you know, I just what.
17:46
I think back, I'm like I'm really glad that I was like a stubborn person because and kind of like sassy at that time, I'm not as bad now, but like I just think I might never have been diagnosed if I hadn't have pushed them to really, um, look at it, so, yeah, I got through uni, but the diagnosis timing was just awful because I basically was going through professional exams. So it's like school I overcompensated uni, I scraped through, but then when you work like a nine-to-five job and then you're doing chartered accountant exams on that same schedule and going to class Friday, saturday, it all it really crumbled then because I just I physically didn't have the time to make up any more work than I could possibly do. So at that time they had incorrectly diagnosed me with sleep apnea and because they gave me a CPAP, which is not what I needed, I did and, within the time frame, couldn't get the diagnosis before my exams, which meant that I didn't have any medication while doing these professional exams. And if you don't have the proper diagnosis and medication, it's difficult because whilst you can have accommodations when you have your diagnosis, you can't have accommodations if you don't.
19:01
So that's why I always tell people like you know people be like well, if you know that's what's wrong with you, do you really need the diagnosis? And it's like, yes, yes, you do, because if you don't have it on paper, they don't really accommodate for it. So I had 15 minutes extra time and these exams were four days, consecutive days of four hours, four hours each. So it was really it was impossible because no matter how I studied, the energy was always going to get me. So, like in the first few days I I had high marks, but see the third and fourth, you could just see how they dipped while while I burned out.
19:42
So it was just, it was frustrating, because now I think in university, if you have narcolepsy, you have the right to have like a bed, you have the right to stop the clock if you need to sleep, like all these things that would have made such a difference. And then, like, obviously, when you think about grief and the stages of grief we were talking about earlier, like that, that time, that time it was so difficult because I was just like you know, if things could have been different if I had been diagnosed earlier, like I could have already adjusted to this. But then that's why you raise awareness, so that it doesn't, it doesn't happen to someone else, and so, yeah, that's, that's a kind of long winded approach of the diagnosis story.
20:30 - Liz (Co-host)
It's so important to get that message out there of what narcolepsy actually looks like, because health professionals I think we've said so many times on this podcast like had very similar stories over and over again Health professionals just don't recognize narcolepsy very easily, narcolepsy very easily, so people do end up being diagnosed with really random things like low iron, low vitamin d. You're just a teenager, you're vegetarian, sleep apnea, like, and that doesn't help anyone. So, yeah, so important to just raise the message of what it actually is and it was very clever of you to bring your book in.
21:08 - Kerly (Host)
I think that's a really good one. I think that, and if people video themselves, I think that's a good way to go forward.
21:15
If, like, bring evidence to the doctor, because I think that will help, because I think sometimes we just don't have the correct language to use to explain it, because using the word tired is never the good language to explain what we're going through, and so I think, bringing that paper really like, without you having to say anything, something physical that you can look at and see that something must be wrong with this person, because why is the handwriting this way?
21:41 - Christine (Guest)
this is yeah, I think in my part I was just so desperate for him to understand, like that, you know, there was always seemed to be an excuse for the tiredness, like first time it was I was a teenager, then I was at university. Oh, university students party too much they're, you know, obviously they're too tired and I'm like no, I'm just trying to go to my lectures like I don't understand. So, yeah, some sort of evidence. And I think journaling is good because you can. If you're writing the daily struggles and the daily symptoms, if you have a consultant appointment, then you can be like right, I usually like to write down um a few things because you don't see them for me anyway. I don't see my consultant that often, so if I have questions it's like oh, here we go.
22:30 - Kerly (Host)
I'm like well, issue number one no, that's really good. I saw people they should do that even for the GP. I do it all the time. I know they don't like it because GP's not supposed to see you for that long, but if you don't want me to come back regularly, this is the way I write the list.
22:48
I put it down and you look at it and we just let's just get through it real quick, oh yeah you don't have to see me again, you know, for a long time, if we just like nip these things in the bud no, no, it's so true.
23:02 - Christine (Guest)
And like the, even if our for our cognitive ability as well like I can forget. So before I'm going on, I'm like, okay, I'm going to say this, this and this, and then he'll ask me something that's really left field and I'll be like, oh, I didn't really think about that, and then I'll forget. So then that's why I'm like here's my list, I'll set that down you know what I think?
23:23 - Liz (Co-host)
there's something about being a person with narcolepsy and having to become organized, and so many people I know who have narcolepsy write themselves so many lists like have these little strategies to stay organized throughout the day more than the average person oh yeah, yeah, like I'm.
23:40 - Christine (Guest)
I. I think it's because, like, I remember going to therapy and she was, like you know, sometimes it's not great to over make too many lists, because then you're kind of telling your brain that you can't rely on it. But I'm like, but I can't, I need, you know, I actually need to pack your toothbrush, so it's just, I just have to, it's just the easiest way for me.
24:03 - Kerly (Host)
I would tell everyone who has narcolepsy or a sleep disorder to get a whiteboard. Put it up in your house, or a chalkboard or something. Have it in your kitchen. It's so helpful and then when you're when you're running late to go out, you just take a picture of the chalkboard and you have it on your phone. So then you have double, because I'm just like you're saying, christine, you can forget so quickly. It just takes one person asking you something that's not what your mind was thinking about and then you've completely forgotten the whole thing. You've been to the supermarket, went for one thing, you left and then got back home and realized you didn't even get the thing that you were supposed to have gotten and more important things in the supermarket. This happens. So if you don't have your list going, yeah, even things like medication.
24:54 - Christine (Guest)
I have to take that every day and, like I came over to my sister's house nearly forgot it like literally number one on the list.
25:04 - Liz (Co-host)
I've done that. I went on a weekend away a few weekends ago and I almost forgot the syringe for Xyrem. It was the very last second, as I was leaving the house, I was like the syringe, because if I don't have the syringe I can't take the medication. And I have forgotten the syringe before and tried measuring out with a spoon and it does not work.
25:26 - Christine (Guest)
Is that what you're on, Xyrem? Yeah, the nighttime liquid medication ah, okay, and the other medication you were saying earlier that makes you anxious, is that xyrem or is that a different one?
25:37 - Liz (Co-host)
so xyrem did cause anxiety for me, yeah, and that's what I increased recently. But I also take pitolisin, which actually has been quite good.
25:46 - Christine (Guest)
That's a daytime stimulant oh, okay, it's interesting because some I just asked because everybody's on a different, some people can be in a real variety um, there's so many different medications for us, sorry, that's why I was just curious what medications do you take or like?
26:02 - Liz (Co-host)
how do you manage your symptoms day to day?
26:04 - Christine (Guest)
so I take concerta. It's a stimulant for the daytime, and then then I take Fluoxetine. It's an antidepressant, but it's prescribed for my nightmares, because there was a point. I just went to him, went to my consultant and said, like I would nearly with the tiredness, just about. But the nightmares are just tipping me over, like I, my mental state the next day is improper, it's affecting my life so badly. So he put me on fluoxetine which suppresses the REM, so that you're not just chilling in REM all night and streaming up Spielberg type nightmares. So yeah, it has definitely helped a lot. They're still quite vivid, but they're not as dangerous or something. So I can be flying instead of I don't know being killed, which is much better.
26:58 - Kerly (Host)
Yeah, I've been on both of those.
27:00 - Christine (Guest)
Yeah, I'd much rather be a superhero than, like you know, be a victim.
27:06 - Liz (Co-host)
Mantra for life. That really is so, as well as the kind of struggles that you've had with the nightmares affecting your mental health. How would you say that narcolepsy has also kind of impacted that?
27:21 - Christine (Guest)
I think managing narcolepsy is a constant kind of cycle that you have to go through. You can't. There's no day that you wake up and you don't experience a symptom. Well, I that's maybe personal to me, but it's every day. It's Christmas, it's your birthday, it's breaks away with friends.
27:40
You have to deal with it constantly and I think sometimes the toll that can take on your mental health is that you're just thinking please give me a break, like I just want to do the tasks that everyone else does and not have you just feel like sometimes basic things that other people take for granted can be stressful. So I was trying to explain to my friend like I was like easy things can for other people can be really stressful for us. So I think that can impact your kind of mental resilience at times, because you're just sort of like I can be really stressful for us. So I think that can impact your kind of mental resilience at times because you're just sort of like I can't really take on any more stress. You know, because the sleep deprivation I read, like whenever you're that sleep deprived in the morning, your cortisol is super high. So like when you think of it that way, like I'm just like is it any wonder that I find it so overwhelming to go for a food shop? Or do you know, if I have, like, if I have to meet a friend in the morning but maybe someone wanted to do something the evening before, I find that. I find like the social aspect of it quite difficult and trying to keep yourself right in terms of drawing boundaries with I need to nap at this time, no, I can't go to that, or I'm gonna have to need a day off and then kind of keeping that boundary but also not isolating yourself.
28:58
I just feel like it's a real. It's something I still haven't kneeled down better than I was, but I think anxiety wise, uh as well, it's a thing that you there's just a feeling of lack of control sometimes and I really don't like that. Like I really like planned things and trying to plan things where I can. But see that where you just get a random flare of symptoms and you're like this is really unfair, I don't think that I, you know, I shouldn't, shouldn't have this, and then you're like, oh right, well, that's the nature of the condition and just the frustration of that can just make you mad and then you're sad because you're just like you know, I'm just really struggling. And then you're feeling like because it's chronic you know you don't always want to be sharing that with people because you're feeling like, oh, they're thinking here, she goes again. Just yeah, yeah, I have a lot of feelings. I just uh, it does.
29:58
It really impacts your mental health and your self-worth and your ability to do things and execute tasks as you would want to. And another thing I read recently was like if you can carry out and execute the tasks that you plan to do, it really like boosts your self-worth. And that really made me think. Is that why I feel so low whenever, say, I sleep in by accident and then I don't get to meet a friend that I meant to? That you know the the feeling of not being able to accomplish what I wanted to accomplish from the smallest tasks really affects your like trust in yourself. And at the end of the day, it's not even about the trust in yourself. It's just a physical condition that you can't help. But you take it personally, if you know what I mean.
30:38 - Kerly (Host)
Yeah, definitely saying that to my sister the other day. Because because every day this week she's like okay, have you done the editing? Have you done the editing? No, I have not done the editing yet. And then she's like yeah, maybe you pack too many things, like my other friend was saying. And then I said to her the problem is I'm packing myself with stuff in order to not be depressed. And she goes that doesn't make sense. I was like, yeah, but because I feel validation from accomplishing things.
31:08
If I'm not accomplishing things, that makes me depressed. And if I have time to, if I have appointments or assignment, that or people counting on me to do something, then I like have to do it. I have to think, oh, okay, I need to nap and then I have to do this thing. I have to nap and then I have to do this thing. So like I have to constantly be sort of on the go in my mind, thinking, okay, I need to nap because I need to do this thing. You know this person's counting on me or whatever. It's just like constantly, like the pressure is like there. But if I don't do any of those things, then soon the depression takes over and I'm like, oh, my god, I'm 41 years old, I don't have a boyfriend. I don't have a husband, I live alone. I have a cat. I don't have kids. And then my mind starts playing these stories to me and then.
31:53
I get depressed. So if I make myself very busy I'll have time for the depression. Doesn't kick in because there's no time in the space in my brain for it, because it's so busy trying to accomplish these little tasks. Doesn't have time to sit and think oh poor Kelly.
32:08 - Christine (Guest)
Yeah yeah, no, definitely. It's unique, like because, again, we have such a vivid imagination for nightmares, where our minds, I feel like, are great at telling us, telling us like really dark tales. You're just like you just be sitting there and like you know, like in Barbie, when she's like she, she's like does anyone ever think about dying? And they're like because she's like, have you seen the Barbie film? Yeah, yeah, there's a part of it. Basically, barbie's not functioning as she should and they're all dancing as they always do. And then she's like does anyone ever thinking about dying? And she's like, they're like what?
32:55
That's not allowed in barbie world everyone's really happy. What are you talking about? Like the intrusive thoughts sometimes can creep up really easily, and especially exhaustion, it just feels like it just feeds into it. But, um, yeah, mental health is a massive thing. With narcolepsy, I just feel like to be able to cope with it. Mental health is, like it's crucial. I feel like that you start to address that because you just you have your whole life to kind of live inside your head and you may as well make it a what do they say? You may as well make it a nice place to be or as nice as you can. But it's not easy, it's really difficult.
33:31 - Liz (Co-host)
Definitely. It's actually really quite cathartic to hear other people expressing that as well, because I think one of the things that I struggle with the most day to day is the frustration and like the constant frustration at how difficult it is to deal with narcolepsy and that just never goes away and it goes. It comes and goes in waves, but it doesn't fully go away. And sometimes I'm just sitting in a room at work and I'm looking around everyone and I'm like, oh my god, these people can just stay awake all day and just sleep all night and it's so easy for them. And when something doesn't feel easy for you and you feel like you're on your own with that, like it does just cause huge feelings of frustration all the time that it's, it's kind of hard to know sometimes what to do with those emotions no matter, like you know what therapy you go to, what positive affirmations you read, like, as you say, that frustration of people just naturally being able to sleep and stay awake, it it doesn't go away.
34:26 - Christine (Guest)
And, like people, when I first started my blog, people were like, oh, that's so nice and I'm like, no, you don't understand I'm. I had to let the anger out in a healthy way because I just thought if I get one more stupid question or stupid comment about me telling people I have narcolepsy, I'm going to scream like I'm actually going to lose my mind. So if public awareness is this bad, then we need to start raising awareness, because I just couldn't. Just the comments you get, like it's just people are hilarious and what are those comments that you've received?
35:03 - Liz (Co-host)
because I know, like me and Kerry have talked about this before, but I'm wondering if there's something about being from I'm hoping I get this right Northern Ireland, where it might be kind of even smaller communities, potentially more rural and therefore even more of a lack of awareness so I think in Northern Ireland there's only like a hundred people.
35:23 - Christine (Guest)
So Belfast is like a. Belfast, where I live, is like a couple, a couple of hundred thousand. So it's a city. But yeah, awareness is next to nothing, like people I'd say. People always say to me like, oh, I would love to be able to sleep during the day. And I'm like, why, what? No, it's because I don't sleep at night, that's why I'm sleeping during the day. And like, ah, do you know, maybe I have a bit of that. And I'm like, no, what do you mean? And they're like, oh, I'm really tired. And then I start, then I start questioning them. Then I'm like, right, so what time do you go to your bed? And they're like, oh, I wouldn't, I wouldn't usually wind down to like 1am and I'm like, no, you're just not sleeping because of stupidity. I literally am doing like my nighttime routine at 9 30 at night oh, meditation, and like let's wind down and let's put all the lights off and I still don't sleep, like, oh, it just drives me crazy, like literally.
36:19
And then there's, there's loads of people that just they, just they hear sleep and they just think, oh, you know, like you're, just you're this one is just making this up and I'm like my favorite thing to do is like be like you know this the way. Explain to them how it's diagnosed. So I'm like they literally scanned my brain. Like you can't make this up. They witnessed how many minutes it took me to go under REM. Like this is not something that I'm just like I'm a bit tired, like this is scientifically proven and they're just, yeah, they just. So many people, a lot of people, want to relate to the tiredness.
37:00
But, yeah, someone said to me a while back don't say tired, say excessive daytime sleepiness, because when people hear tired, they think it's their type of tired, which is not the same, like they're not going to fall asleep at inappropriate times, like they'll maybe feel a bit tired but they'll go to their bed and they feel refreshed, whereas we don't get that and you know there's a lot of ignorance out there. So, yeah, I tried to like channel that annoyance and to raise an awareness. But yeah, I think people try to relate but it's annoying sometimes. You know if it's a competition, that's when it really annoys me. Oh, you think you're tired now, like wait until you have, like children and whatever, and I'm like I don't have children, but I'm awake every couple hours, I can also cry.
37:55
You know that's just people. I think people are always trying to compare and it's like the more tired you are, the more busy you are.
38:03 - Kerly (Host)
Like that's like a status kind of thing, like oh, I'm so important and I'm like good for you what would you like to see change in terms of support resources for people with narcolepsy, and how can friends and family, and even like the healthcare system, better assist individuals dealing with the condition?
38:26 - Christine (Guest)
what I would say to people that maybe have their, maybe parents of someone that has narcolepsy, or it's their brother, sister, friend. Um, I think there's a lot of frustration, even from their part, seeing like a loved one go through something that they can't directly help them. You know they can't take it away, they can't cure narcolepsy. But what I would say to them is, like I don't expect you to be able to like get the cure for narcolepsy. It's the day to day living. So like the things like doing your food shop, preparing meals, cleaning your house, all like tasks that require a lot of energy and that we don't like maybe have the actual physical ability to complete in one sitting. For example, cleaning my house, I have to split in three. So one evening I'll have to like gather all the items like off the floor, like tidy, like there's anything on the floor and I think to tidy, I tidy it all away. Then the next morning I might clean the bathroom. You know like I have to split all that up because my energy if I did all that in one sitting it's too much. I just can't do it. So like things like that. Like you know the spoon theory. If family or friends haven't heard of that.
39:41
I would tell them basically that that our energy is like having a limited amount of spoons and some tasks require more spoons than others. So that, like basically say, you've a really busy week where, for example, you've exams or you have friends over, or you know that if you come back from a holiday even, or a different location for work, that you're going to be exhausted, try and draft in the trips like, try and be like, please help me with my food shop, please like help me. I think the most difficult thing for me, even like now, is asking for help, like and it's because we're trying not to be a bother, but at the same time, like there's no point of smiling as our ship is sinking, like there's just, it's just not, there's not, it's not benefiting you, it's just not. And you know what most people don't mind helping you. They just don't know. And if they don't know, they can't help. So I would say it's not even you know to do with narcolepsy itself.
40:42
It's coping with it, and something as simple as making your food and tidying helping you tidy your room can be the best thing in the world when you're too, exhausted and when you're especially, you know in your environment, like us, like I don't know what you use, but I spend a lot of time at home, so if I'm in my room and it's messy, it can really it's just really annoying so, and that can affect your mental health oh, yeah, I say if my apartment looks like a raccoon's been through it, then I am not well, it's just like stuff everywhere.
41:17
I'm like, oh, it's like tidy mind, what is it? Tidy place, tidy mind, sort of thing. But yeah, and that's what I say to family members. Anyway, it's, it's not complicated and don't complicate, you know, trying to figure out all these mad solutions on narcolepsy. Just be there for the daily tasks, because and you know, just kind of, if someone's having a bad time with narcolepsy, don't be like, oh, did you do too much or did you do this and why are you not doing this?
41:46
Um, just know that if their narcolepsy symptoms are flaring the way you do it in motion, they can't. There's no point saying what did you do yesterday or what are you going to do tomorrow, because you're in it. You know. Yeah, they like you know I'm here for you and give them a hug, like it's honestly not that complicated, but people sometimes see your narcolepsy as a complex puzzle and you just want a hug. I know that's really not like very revolutionary advice to give, but you just don't have time, you just don't have the energy to dissect it sometimes you just can't. And then healthcare system.
42:22
Okay, sorry, I'll summarize this I really think you give everyone free, like free therapy, because therapy is expensive, yes, yes, not anybody, not everyone has the ability to afford that. Gym classes as well, like exercise classes. If they had some sort of either discounted rate or free gym classes, and it doesn't have to be intense, because intense doesn't always work for me, but like even yoga or pilates or something, would be great. And then if you were really in the thick of like narcolepsy symptoms, actual like health care assistance I know this might seem like far out, but like there's some times where I'm like I would really just need someone to do my shopping for me and clean my bathroom. And if you, if they did that, my, my mental, my energy could be kept to getting better instead of sinking even further because I'm trying to keep up. And then the last thing, sorry, is medical skills. They need to provide a more comprehensive education on sleep, because I know that medical schools here only maybe do a lecture one lecture over the course of seven years on sleep. It's usually focused on sleep apnea and not the neurological side of like narcolepsy. So you know, if gps and doctors aren't taught the signposts in the first place, you know how are we ever going to be diagnosed.
43:43
The public and advocates, people like ourselves, can raise awareness. But if the medical resource at the front was right in the first place, we wouldn't have to do all this. You know, I mean we, we still like doing it to raise awareness and help, but it's just. I do feel like there's a lot of onus put on the GP and I know there's a lot like from knowing someone. I know there's a lot to cover. But even the medical schools offering it as an additional course or something you know just that they want to know for their own education. Because I do feel bad. I can't like I'm too empathetic at times, but I can see why people don't get diagnosed when they don't even know the basic symptoms of something like narcolepsy. Yeah, so true, well said, I'm like speech over. I just had to read that part because I was like I know I'll forget no, that was so well said.
44:35 - Kerly (Host)
Oh my gosh, you just touched on all the spots.
44:38 - Liz (Co-host)
I think it's so true as well with family and friends, with how they can help. And you're so right, sometimes just keeping it simple and helping with those daily tasks is the best thing to do. And I'm trying to say this as loudly as possible so my partner can hear um, but it's actually so true, and I think particularly when I talk to my parents and they are naturally fixers and so they want to just make everything better instantly, which is so lovely, but sometimes it's like actually I'm not looking for a solution to my problem, I just want you to hear where I'm at and like how hard my day was. And, like you say, just having a cuddle can just sometimes make it all better and it doesn't take the narcolepsy away, but it just shows that someone is sitting there with you in those emotions and that helps to validate it.
45:30 - Christine (Guest)
Oh, totally like you you don't have to have like a fast emotional intelligence to just be like oh, that really sucks. Do you want an ice cream? It's the simplest of things so true and with our sugar cravings. Yes, we always want an ice cream please can we have a nap after, because it'll probably knock us out.
45:52
I have a funny story actually about an ice cream, but I'll keep it for the night so I was in Rome with a now ex-boyfriend and I was on one of those city site site centers. We were up at the top of the bus, but just before that we had gelato, which I was like this is delicious, loved it, got on the bus, was like okay, so ready for this tour, and then I woke up. I didn't even realize I'd fallen asleep. And he goes to me uh, the Coliseum's just around the corner, and I was like how do you know that? He's like christine.
46:26
This is not the first time we've been around. You've been asleep, so you've been through the whole 20 stops or whatever, and I was only seeing it for the first time. Oh, my god, different times too. Like my friend, one time we did the same thing in budapest and she was like, oh, do you know? Like oh, so that's right now, that's down that street. And I was like why do you know so much? She's like Kristen, you're asleep during the what you would learn when you're awake.
46:54 - Liz (Co-host)
Christine, you need to learn your lesson. We need to do walking tours okay, Because we can't fall asleep on walking tours.
47:01 - Christine (Guest)
After that I was like I'm done, I'm done, like I love the idea of it. I think I love the idea of it. And then I'm just like Grandpa Simpson and the whole way around it.
47:10 - Liz (Co-host)
It's like no it's not gonna work. I would love to hear more about your blog as well and how you started it, what you write about and how you feel that helps your mental health.
47:23 - Kerly (Host)
And what it's called as well, so people can look it up.
47:25 - Christine (Guest)
So it's called thegirlwhor can look it up. So it's called the girl who ran away in her sleep. Dot com. Quite lengthy. If I look back now I'm like I should have stuck to something shorter or at least seo friendly.
47:36
But the idea was that you know the Coldplay song paradise if you go through the lyrics of that song. It's basically about the little. If you watch even the video as well, the little elephant is lost and he's on the tube and stuff and he's in the corporate world and he's like totally away from his tribe and everything that he likes. And then you see at the end he like reunites with all the other elephants. So it's kind of like I ran away in my sleep because I was running in my sleep, in my nightmares. But I also started that blog when I left my corporate job and I just was trying to find like where are my elephants? This is not really like where I'm meant to be and I think I was just trying to make sense of it all and it wasn't like it was cathartic to chat about it. I just I think it was really helped me to process it because each blog post I was able to put to bed the memories, I think. So I tried to like I started from the start and that was like when I was little and really couldn't get up for school, and I tried to make it kind of funny as well, because it was just kind of like some of it is funny. So, yes, I just tried to find the fun, the humor in it, without like other people thinking, oh my god, you're laughing at our condition. But it's just the way I coped with it.
48:49
And so I wrote about all the different phases, about from school to relationships that's another minefield to doing exams and the fear of failure. And then there's like the fear of failure and then actually feeling is like like for a perfectionist at the time it was like my worst nightmare. And then navigating that was okay, it's here. Actually the corporate world wasn't serving me anyway. Like I lost my job because of narcolepsy, because I failed my exams. My contract had a stipulation where you had to do the them in a certain time frame, so like that was so traumatic and probably one of the worst times of my life and I just wrote it. I wrote about it and I think by writing about it I'm like okay, like that actually happened and that was.
49:38
You know that was traumatic because I think at the time I just needed to keep going. I needed to go through the motions like, okay, I've lost my job, no problem, I'm gonna work here for a while and I'm gonna look for a job. Oh, I'll get another job. But like I didn't process any of that. So, yeah, I think it's just like it's a light-hearted in parts. And then other parts you're like, oh, my god, it's so dark. But I didn't want to hide away from the darkness either, because that is people's experience with narcolepsy and you can't, like you can make it's like we can laugh at it, but you can't, um, but no, it's just like trying to make light of it. But at the same time, like you do need to kind of tell the parts that are dark, because it might help someone else that I've been through this dark, dark thing and I'm still here, like I've actually got over that.
50:20 - Liz (Co-host)
Um, so yeah, that's amazing and I can totally relate with the job situation, because I had a job that I was in for three months and I'm not sure whether I, so I quit it in the end, and I'm not sure whether I left because of the narcolepsy or it just, yeah, it all seemed a bit much for me. To be honest. The pace is way too quick. I just couldn't keep up with it, and it's very hard when you leave a job for narcolepsy related reasons, because I don't know about you. But I definitely felt like I was a bit of a failure, like a cry.
50:55 - Christine (Guest)
Yeah, yeah.
50:57 - Liz (Co-host)
And it is a traumatic thing to go through that and it's a big emotion or lots of emotions to have to process. I mean, I'm personally glad I had that experience because I feel like I learned a lot and it's led me to where I am now and listening much more to my body. But can you tell us more about kind of your experience?
51:15 - Christine (Guest)
of it. I think, as you said there about, um, just feeling like a failure, that was. That was a really tough thing, because I think when you're initially, or even just before you're, diagnosed, you don't understand that this physical condition is not your fault and you internalize all that like oh, like this, this is clearly my fault, that I'm not passing these exams, I'm not doing enough, I'm not enough and like the self-worth, like issues that that caused or were quite deeply ingrained even when I was diagnosed. I mean, I was the kind of child that was always studying like high, achieving, and then, for all that work, it felt to be ripped away from me and I just I had a real identity crisis. I didn't really know what to do next because I didn't know who to be when I wasn't passing exams. And I know like I know like that sounds a bit sad, but I think a lot of people that are like that haven't had to address that as their identity, unless it's been ripped away, which is probably like.
52:22
You probably felt like this as well, where you just literally you just didn't know where to turn. Like you just kind of were like am I, where does my career? You had this like stairs of career and then it's like there's no path anymore, like I don't know where to go. So I think, mental health wise, definitely one of my managers that I used to work with said to me Christine, please, like, please, please, please, don't let this define you, and I didn't even understand what that meant at the time. But she basically said, like she meant like you've got a good personality and like you're really good to be around. I'd really hate if this moment in your life basically turned you to the dark side or something. And it's, it's, it's really true.
53:03
I can I honestly can understand why people would be like really impacted, but I think I was just like I'm still here, like I'm still, I can still try to do something else. But, yeah, therapy had to go to therapy because I just didn't know. And then, out of therapy, that blog was born as well, because she we a lot of the work we did was around identity and what other things I like doing, and what other things I like doing and what other things you know, like what makes me feel good and worth issues. So it's just something you never really explore until you have to. So you were probably the same, were you in speech and language therapy before that, or is that a new career?
53:49 - Liz (Co-host)
Yeah, so it was a different part, a different field of speech and language therapy. So it was in a general hospital and I was always something I really wanted to do. And then I got into that setting and it was just a nightmare, like it was so fast paced. It was around the time I'd started my medication, so my anxiety symptoms were very high. In fact, the anxiety was so fast paced. I was around the time I'd started my medication, so my anxiety symptoms were very high. In fact, the anxiety was so bad and the adrenaline was so strong that I wasn't even napping at lunchtimes because which I need to do every day um, because it was just like I was so zingy on it, but in a bad way way.
54:28
So, yeah, I massively burnt out and it was one of those environments where, because I was, because it was super fast paced and because my anxiety was so high at the time, I just couldn't retain any information. So I think, like we were saying earlier you know we always have to write things down all the time and that I was just going into overdrive in that role. Yeah, it really wasn't working for me. But I'm so glad I had that experience because, funnily enough, my manager at the time also said something to me which was no job is worth your mental health, um, and that was. I just needed to hear that, because I was like you know what? It's so true, and I don't need to be in this job. I need a job, I need to get paid, but it doesn't have to be this role that's so true, it really is.
55:17 - Christine (Guest)
And your career is longer than you think. You know like people be, like you have to do xyz right now and it's like you actually have a lot more time than I think. When you come out of uni you realize you know, definitely it's a marathon, like it's a marathon, not a race.
55:34 - Liz (Co-host)
You don't have to go like right away for sure and I think if you speak to lots of different people narcolepsy or no narcolepsy so many people have had a similar life experience where they've gone into a job they thought was great and then quickly realized it wasn't for them, and whether they've quit or been fired, actually it leads you in a different direction. That's probably better for you in the long run this is it.
56:00 - Christine (Guest)
I, I think as well. I probably would eventually have burnt out at some point. You know, even if I had survived the exams and stayed on to be manager or whatever the pressure, the more work that's added on, the worse my symptoms got. So it just seemed like that career was never gonna serve me, because no matter what company you went to, it was like the same workload, just a different name for it or a different kind of boss. So, as you say, like I'm just like, I think I am where I'm meant to be now. It was difficult, but I've definitely just kind of addressed these kind of issues now rather than later.
56:37 - Liz (Co-host)
So better late than never, carolee, is there any other questions or is now a good time for my red button question?
56:46 - Kerly (Host)
I want to ask Christine, were you ever diagnosed with with any mental conditions?
56:53 - Christine (Guest)
my therapist diagnosed me with generalized anxiety disorder, but in terms of I I never know. Did I have anxiety before I had narcolepsy or do I have anxiety because of narcolepsy? It's like the chicken and the egg. A lot of my anxiety, which is like social anxiety, is surrounded by the fact, like, am I going to have enough energy to complete this food shop? No, I'm not, so I'm not going to leave. I'm not going to leave.
57:22
I feel like everything I feel in terms of mental health is secondary to having narcolepsy and the out of control feeling. And then there's also a thing like I, like I don't have a formal diagnosis, but I really suspect I have ADHD. But I again, as you were talking earlier, curly about um, you need to nap, then you need to do xyz and then you need to sleep. I feel like it's just because I have limited time. I always feel like I'm behind and then my thoughts are racing and I can't relax. I don't know again if it's correlated, but I've kind of have this ADHD style of thinking now because I'm trying to get as much done in the time given and then you don't know. You know, obviously people with inattentive ADHD have trouble concentrating, but so do. People with inattentive ADHD have trouble concentrating, but so do people with narcolepsy. So it's like you know. And then whenever you think about it being genetic, you know, and it's normalized a lot in families and I'm like maybe we just all have.
58:21 - Liz (Co-host)
ADHD no it's just yeah, definitely worth exploring definitely so.
58:28 - Kerly (Host)
Also, is there anything from your therapy that really helps you and you think you'd like to share? Do you think it might help other people?
58:37 - Christine (Guest)
routine, I think, is something that as children, we're put into a routine, we follow our families little routine. But as adults, sometimes when you have your own time and space and you're like I'm gonna do whatever I want and then you're like, no, actually you know a routine in terms of see simple things like when are you gonna do your food shop and when are you gonna clean your house, down to the specifics would, I think, really helped me. And also pomodoro method it's 25 minutes working and then five minute break. 25 minutes working, five minute break and that little reward of either being able to to like read it, I don't know could be anything like going to the bathroom or I would finish my makeup or something in the morning when I'm at work.
59:26
If I'm working from home, that concentration is a lot easier for me to complete tasks and it can be transcend for everything. For housework, if you're like, oh, I'll only spend like 10 minutes, 20 minutes doing something, versus oh, it's going to take me three hours, it's just a lot more manageable. Break everything down. Break every single task down. Break everything down. Break every single task down from lift bag to go to fridge and lift lunch out. I just think other people might think it's silly, but honestly, whatever works 25 minutes, then have a break yeah, so, pomodoro, I'll write it in the chat.
01:00:05
If you look that up, there's um ADHD. People do it really well. There's like a few youtube people that go through it.
01:00:12 - Liz (Co-host)
So yeah, it's all yawn of the podcast today. Congrats, that's actually so good we've done well, we have. We actually have um. So do you set an alarm for that method, or do you just kind of look at the clock?
01:00:29 - Christine (Guest)
so I'm a Harry Potter nerd. If you go on YouTube and type in Harry Potter Pomodoro, it'll play like the Gryffindor common room for 25 minutes and it's just pages. I know I sound really weird. This is where my cred goes through the floor. You can do that for everything, like Lord of the Rings, like whatever you're into, but it's so soothing. And then the alarm goes off. On the YouTube video it doesn't have to be Harry Potter. There's loads. There's like body doubling where other people are like typing, and then they take a break and then, yeah, type it into YouTube. Honestly, it's a really weird word, but it's really soothing.
01:01:10 - Liz (Co-host)
Okay, I'm excited to look into that.
01:01:12 - Christine (Guest)
If you like ASMR, you'll like it, I think.
01:01:16 - Liz (Co-host)
Sounds good. Okay, so is now a good time for the red button question.
01:01:21 - Kerly (Host)
Yes, go ahead.
01:01:22 - Liz (Co-host)
Yay, okay, if you could press the red button and completely get rid of narcolepsy from your life and never have experienced it, would you do it, and why that's really difficult?
01:01:34 - Christine (Guest)
I probably would like to get rid of it, but then I have had a lot of growth having in terms of having had to deal with something like narcolepsy. I have kind of grown as a person. I don't know, I probably would. Yeah, would you?
01:01:51 - Liz (Co-host)
oh, I don't know. No one's ever asked my own question back to me. I don't think. I don't know what the answer is I think I think I would. It depends what day you ask me on and what time of day you ask me. But maybe majority no, just because this is my life and I feel like it's helped me to be an empathetic person, which has helped me in my career, and it's taught me a lot of life lessons, as hard and as painful as it is sometimes, I I think I would.
01:02:20 - Christine (Guest)
Maybe I'm let I'm grateful that I went through those lessons because I was, in a way, forced to face some of my like, basically mental struggles that I was just sweeping under the carpet on some difficult days.
01:02:35
I definitely would like to say, like I've learned enough lessons, I would like to get rid of it now, please yeah but I think you know there is growth and adversity and I'm on a completely different path now, but maybe this is the most authentic path to me and I needed something like that to really make me kind of do it, because otherwise I was going to burn myself out regardless. Because I just wanted to be ambition wise, I was always going to push myself really, really hard. So I feel like something, some sort of brakes needed to be put on to be like no, I mean, who knows like if I didn't have narcolepsy, I might have pushed myself so hard that I would have developed some other health conditions.
01:03:19 - Liz (Co-host)
So it's kind of hard to know, isn't it a bit of a vague answer, but sometimes yes, sometimes no it's all right, we'll accept it, and can you tell us a bit about your podcast as well, before you go?
01:03:33 - Christine (Guest)
so my podcast is called mind your sleep, and myself and another girl called Aoife Hart co-host it as well, and basically the message behind it is mind. It focuses on the mental health aspect. You're being a unique approach to narcolepsy because sometimes, you know, not everybody has. Just because we all have narcolepsy, not necessarily does everyone feel the same way about it or approach it in the same way. And, uh, health being like the aspects of health that affect sleep, like nutrition, mental health and exercise and things like that.
01:04:13
So basically all the things we've tried in terms of trying to help manage our symptoms and just kind of we're hoping to interview, like um, psychiatrists and nutritionists and things and just they're just what they know about sleep and how, like nutrition and nutritionists and things and just their just what they know about sleep and how, like nutrition and mental health and exercise as well, impacts your sleep. So it's kind of like we can't get rid of narcolepsy, but sometimes we can alleviate our symptoms a wee bit. So anything it helps, you know. So, um, and then we go through everyday things like how's our week? Is there anything we're reading anything? That's because we like to kind of be like we're normal people too, you know, like in a way, like we're not, you know, we have interests outside of just having narcolepsy Interest, but identity I mean sorry.
01:05:03 - Liz (Co-host)
Narcolepsy is my number one interest. I love it.
01:05:14 - Kerly (Host)
Sounds good. She's my number one interest. Sounds good. Thanks very much for having me as a guest. Oh, thanks for coming on. It was really good to hear your story and and all your suggestions. For all the doctors out there that's listening and all the people in politics that are listening, there's so much information in this podcast for you to implement and make some changes that will help lots of people.
01:05:37 - Liz (Co-host)
You've heard it here first, so it's also a nice cathartic episode, always good to share how we're feeling and get out there definitely.
01:05:50 - Christine (Guest)
Um, I always struggle with the end of these things jingle, jingle, jingle.
01:05:56 - Liz (Co-host)
Okay, bye everyone. My favorite phrase I like to say is happy napping everyone.
01:06:04 - Kerly (Host)
Oh, that's a good one, that's a good one views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Thank you for spending time here with us at narcolepsyators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
