S3E11 Navigating Narcolepsy in Namibia Josephine's Journey

In this episode of Narcolepsy Navigators, hosts Kerly Bwoga and Liz are joined by Josephine Niipinge from Namibia, who shares her experience of living with narcolepsy with cataplexy. Diagnosed at the young age of 13, Josephine discusses the challenges she faced due to perceptions of witchcraft and lack of awareness about her condition in her community. She talks about her struggle to get appropriate medical treatment and how it impacted her education and social life. Josephine recounts her journey from being misdiagnosed and taken off medication to eventually finding effective treatment and resuming her studies. She highlights the need for increased awareness about narcolepsy in Namibia and reflects on how her condition has made her more resilient.

Episode Highlights

03:51 Josephine's Diagnosis Journey

04:47 Challenges and Misunderstandings

07:12 Life with Narcolepsy: School and University

21:27 Teaching Career and Managing Narcolepsy

28:01 Living with Narcolepsy

29:43 Challenges in Social Life and Teaching

34:31 Raising Awareness in Namibia

Transcript

00:13 - Kerly (Host)
Hello, welcome. You're listening to Season 3 of Narcolepsy Navigators, brought to you by Naps for Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. I'm Keri Boger, the founder of Naps for Life CIC, and welcome to Narcolepsy Navigators. I am Kierley, your host. 

00:50 - Liz (Co-host)
And I'm Liz, your co-host, and we both have narcolepsy with cataplexy. 

00:56 - Kerly (Host)
And today we have Josephine from the Nibia, and welcome to her story. So, liz, how was your week? 

01:06 - Liz (Co-host)
And welcome to her story. So, liz, how was your week? My week has been good. I am excited to be back on the podcast because it's been a while since I was last on it, had a little break, and yeah, so it's good to be back. 

01:21
And I have set up an Instagram trying to raise awareness about narcolepsy, so I've posted a few things. I even posted a video of myself talking, which was definitely out of my comfort zone, but I thought I'd give it a go, and that's called the dressing gown club. Yeah, so give that a follow, if you're listening. And I had a birthday party last night, which was really fun, did a murder mystery with a few of my friends, and it was actually very hard to follow because there was too many of us so I couldn't even remember everyone's characters, let alone their different backstories, so it was a bit manic, but I think most people enjoyed it and a few people managed to guess the murderer. So, yeah, I've had a good week. And then today I just chilled, which was nice, and there was sunshine, so it was good to just relax. 

02:36 - Kerly (Host)
How was your week, caroley? Yeah, my week went fast again, but it was good. I did a perm for the first time curly perm and the client was happy, so that's good, nice, yeah, and it's much harder than you realize, like even on the, from doing it on the dummy to doing it on a real person. It's a bit more challenging yeah and we got some sunshine, which is nice, and so we hope it continues definitely and how was your week, j, josephine? 

03:04 - Josephine (Guest)
It was good. 

03:10 - Kerly (Host)
What did you do? 

03:13 - Josephine (Guest)
I was just busy with work. Busy with work. Yeah, I work as a teacher, so examination is approaching. I am just busy with summarising my things. What subjects I teach? Natural science and home ecology, grade four to seven. 

03:37 - Liz (Co-host)
Is that age four to seven or like? 

03:40 - Kerly (Host)
grade four to seven Grade it's grade, isn't it? It's the grades. 

03:46 - Liz (Co-host)
Ah, okay, Nice so. 

03:52 - Kerly (Host)
Josephine, can you introduce yourself? Tell us your name, where you're from your age, if you feel comfortable and what year were you diagnosed? 

04:14 - Josephine (Guest)
I'm Josephine Ipinge, 28 years of age, from Namibia, and I was diagnosed in 2009. Ah, okay, yeah, that is when I was diagnosed. And that is when I was diagnosed people thought like I was misdiagnosed or something. There was someone that told my mom that the medication that I'm taking parentry are for these people that are having epilepsy or something. So my mom took the advice and then I had to stop. So all those years I was just there suffering. 

05:13 - Kerly (Host)
Wow. So how old were you at that time, do you remember? 

05:19 - Josephine (Guest)
13. Oh. 

05:23 - Kerly (Host)
Yeah. 

05:24 - Liz (Co-host)
So you were really young when you were diagnosed yeah wow, and what kind of symptoms were you experiencing at that age? 

05:40 - Josephine (Guest)
okay, I remember the day I started. I was in class and I remember my teacher asking me if I was feeling well, but then, I don't know why, she saw these signs that you just sometimes you look tired or something, or you look sleepy, or you are sleeping, but you don't even know you are doing. So. The teacher asked me, then I said I'm fine, and then after a few minutes, again she asked me what is wrong with you? And I was like no, I don't feel anything, because I also don't know how to explain how I feel Like I'm not sick or something and then she chased me out of her class that is where it started now, from there, because it's like I'm being disrespectful sleeping in class and I said I'm not sick. So he sent me out From there. That is when my mom took me to the clinic, but on that day that is not when I was diagnosed, that was 2012. 2013, that is when the symptoms got to. I would be sleepwalking, I'll be hearing voices, I'll feel strange things happening to me. Yeah. 

07:02 - Kerly (Host)
And what did you tell your mom? Did you explain this to your mom? 

07:06 - Josephine (Guest)
that time I was in high school. 

07:08
But yeah, I was in the hostel so I used to go home only for weekends, but she knew what was happening when I'm going back to school. She used to help me with carrying my things to escort me to where we get the hide. Now I'll be there behind because I'll be walking while I'm sleeping and then from there, that is now when she decided to take me to the hospital for the second time. And what happened then? So we just went to a district hospital and then that is not where I was diagnosed. This doctor had to send me to Oshakati State Hospital. That is the biggest hospital that side. 

07:59
Okay, then when we went there, they referred us to the psychiatric ward, that is ward 16. And that's the thing they told me to stop the medication, because almost with this psychiatric ward, people think that it's just for people that are not fine, like are mentally disturbed or something. So they were like no, you can continue. They were like no, I cannot continue going for follow-ups. Those are the family members now, because the pills that I was taking, apparently they are for people that are mentally disturbed. 

08:37 - Kerly (Host)
Oh wow, so they gave you a different type of medication. 

08:40 - Josephine (Guest)
They did not know. 

08:42 - Liz (Co-host)
So were you diagnosed with narcolepsy. Did you say 2009? 

08:47 - Josephine (Guest)
Yes, 2009. 

08:49 - Liz (Co-host)
Ah, and then they gave you medication for narcolepsy. 

08:54 - Josephine (Guest)
I was taking Ritalin. 

08:56 - Liz (Co-host)
But then they thought that you had psychiatric symptoms, so they took you off the medication. Is that right? 

09:07 - Josephine (Guest)
it was one of the relatives. She's the one who told my mom that was not supposed to take those medication, because they are for people that are mentally disturbed okay. 

09:20 - Kerly (Host)
So how did you feel when they said you couldn't have the medication anymore and so you couldn't go back to your doctor? 

09:28 - Josephine (Guest)
yeah, I didn't go back because most of the time I was just in the hostel. Since I was in high school I just used to come from there to go to the doctor. So I had no, I just stopped. 

09:44 - Liz (Co-host)
Why were you in the hospital for a long time? Excuse me, why were you in the hospital for a long time? 

09:58 - Kerly (Host)
You were saying that you had to stay in the hospital. 

10:02 - Josephine (Guest)
No, I did not stay in the hospital. Stay in the hospital. No, I did not stay in the hospital. I said that time I was in high school, so I was in the hostel at school. Oh okay, when it's time for me to go for a follow-up, my mom have to come to get me from school. 

10:19 - Kerly (Host)
Yeah, so once the family friend advised your mom to take you off the Ritalin. Then, when you were on it, you were on it for a couple of months. She said, yeah, three to four months, four months. Did you feel any different? 

10:38 - Josephine (Guest)
Yeah, I knew they were really helping me, but then I had no choice really helping me. 

10:47 - Kerly (Host)
But then I had no choice. Yeah, because you were a child and you're under the care of the parent, so the parent decides what to do. But it was helping you. So when you got taken off and then you didn't have, how did you cope then? 

10:58 - Josephine (Guest)
I really don't know how I coped because, like at school, in class, I'll be there, but then I was just doing. Well, I was just the first in class, so most of the people did not really pay attention to me. 

11:17 - Kerly (Host)
Ah you were lucky that you were bright Until grade 10. What happened at grade 10? 

11:25 - Josephine (Guest)
until grade 10. What happened at grade 10? Up from grade 8, up to grade 10, I was performing well. Grade 11, that is now when things started to be difficult. So my grades started to go like low, like I was no more the best learner, like I used to be. And how did that make you feel? It was not easy for me, especially the pressure that was coming from the teacher's side, when they know that you used to do well and then later on you just started performing like your grades are going low. They were not happy with it and I was not happy, but there's nothing that I could do. 

12:03 - Liz (Co-host)
Why do you think your mum believed the friend instead of the advice from the doctor about the medication? 

12:17 - Josephine (Guest)
advice from the doctor about the medication. I think the reason my mom believes is because number one, that word where I used to go, that is where they treat these mentally disturbed people. And the second reason the person that told my mom is a nurse. So she thought the person knew better because he's a nurse. 

12:37 - Liz (Co-host)
So she thought the person knew better because he's a nurse, that must have been really hard coming off a medication that was working very well for you. 

12:49 - Josephine (Guest)
Yeah, it was really hard for me. I was not even expecting to pass grade 12 to finish my school. 

12:58 - Kerly (Host)
Did you finish? Were you able to finish? 

13:02 - Josephine (Guest)
Yeah, I managed to finish, although I was not having higher points, like how was my parents expecting? But for me it was like a miracle because I was not expecting it. When my result came out then I saw I got these points. I was like, oh okay, how did I do this? But then my aunt could not believe she was even saying no, let's try again and check is really your points? Because in 10, I was among those people that stopped their school, like I had higher marks at the whole school, higher points, oh wow. But now grade 12, when I completed, my points were very low but then I qualified to go to UNAM. That was the good part, that my points were like good enough for me to go to the UNAM. What's UNAM? Unam is an institution. It's a tertiary institution. 

14:14 - Kerly (Host)
A special institution for learning, like a university or college. It's University of Namibia, oh okay, that's good so you decided to go to uni, so what did you choose to study? 

14:28 - Josephine (Guest)
I chose education. What was it like my first year? I was only attending my major modules. My first year, I was only attending my major modules. When it's time for core modules, I'll go to the hostel and sleep. So I ended up passing first year with core modules behind. 

14:48
That's not good, and to me it was still like how did I do this? Because in class you'll still be sleeping, people are making fun of you and what was hard is studying on a laptop, oh yeah. Second year I failed. Oh no. And from that failure, that is now when I decided that, no, I'll have to go back to that hospital to see if they will still send me to the, because I knew that if what the other lady was saying is true, then it will not happen again. So I decided to go back because of everything that happened, even the situation at home. But what was happening at home? At that time I was not staying with my mom, I was staying with my aunt, and I feel like it really brings a lot of misunderstanding or conflicts between the two of us. 

15:43 - Kerly (Host)
Okay. 

15:43 - Josephine (Guest)
Because she would feel like I don't want to work or I don't want to do this and that. 

15:49 - Kerly (Host)
So you were having all these symptoms and she couldn't understand what was happening. 

15:54 - Josephine (Guest)
Yeah, she couldn't understand. 

15:56 - Liz (Co-host)
Did you get any support at university for your narcolepsy? 

16:05 - Josephine (Guest)
The only help that I got is after I went back to the doctor to get diagnosed this first year. I told them my situation or my condition. They were still like asking for the doctor's what? Oh, the letter, yes, the letter from the doctor that proves that I have that condition. 

16:25 - Kerly (Host)
And that was. 

16:25 - Josephine (Guest)
The only help that I got is for me to get in the hostel, and that was in my last year already and that was in my last year already, so when you went back to the doctors was it easy to get the letter or you had to redo the test when I went back, because it was still the same person that I found it there, so it was not that hard to get the letter because he could still remember me. 

16:56
Oh, okay, yeah. And the other thing, the way I was diagnosed, it's not like I went through tests or sleep tests like I had other people did, it was just through the symptoms. 

17:11 - Kerly (Host)
Ah, yeah, wow, it's because of the symptoms so that's very interesting because it means that your doctor knew the symptoms of narcolepsy. Most of the time, people tell the symptoms and the doctors don't know the symptoms and so they don't get diagnosed. Yeah, so your case is the opposite, which is very uncommon, that the doctors you would tell them the symptoms and straight away they know. So when you got your letter back and everything, how did you feel? 

17:53 - Josephine (Guest)
Okay, that was. I went back 2016,. 2016, december, so 2017,. I started when I went back to varsity. Things were easier, but then I did not get the help like, maybe to be given extra time or things like that. Ah, to be given extra time or things like that. 

18:22 - Liz (Co-host)
The only help that I got was for me to get space in the hostel. Why did? 

18:29 - Josephine (Guest)
they not give you extra time, for I think with that I went back on treatment. I was having having my meds, so I was doing well with it. Okay, yeah, because first when I went there there were times when I missed my tests and things like that, and then I went back to tell them about my condition and then they said they could not help me because that time I was not having that letter. So after I got it I did not I did not go back to ask for help like that because after that I even managed to clear out all the modules that I left behind oh wow, that's very good. 

19:14 - Kerly (Host)
So your medication, your treatment was working. 

19:18 - Liz (Co-host)
What medication were you taking then? 

19:22 - Josephine (Guest)
I was on Ritalin. Yeah, I was taking Ritalin twice a day, morning and then midday. 

19:32 - Kerly (Host)
And what are you taking now? The same. 

19:36 - Josephine (Guest)
I'm taking, I'm on. 

19:38 - Kerly (Host)
Consulta. Oh yeah, consulta, you don't like this one, I like this one. 

19:44 - Josephine (Guest)
It's really it's much better than the other one, because this one I only take once in the morning. 

19:51 - Kerly (Host)
Yeah, yeah, I've been on Consulta. It's quite nice. Yeah, yeah, I've been on concerto. 

19:59 - Josephine (Guest)
It's quite nice. Yeah, since I took in the morning, I did not even sleep up to now. 

20:04 - Kerly (Host)
Wow, yes, it's working really well. That's really good. How did your mom feel when you went back and got your papers and stuff? 

20:15 - Josephine (Guest)
My mom didn't have a problem with anything For me. She understood everything. That's good. That holiday my aunt sent me to my mom's house so that apparently I must go and rest, since it's her Now. She did not, she could not understand. I don't want to work or something. Then I must go and take a break, or something. All right, that is now when I got a chance to, I told my mom that no, the medication that I was taking, they were really helping me and I'm thinking of just going back again. That year I was already repeating my second year and I was also scared of failing again. Oh wow. 

21:03 - Kerly (Host)
So you did four years of university. Four years instead of three. 

21:09 - Josephine (Guest)
No, okay, I did all nursing. All nursing is taking four years. Okay, it took me. Was it five or six? Because I started 2014 and I completed 2018. Okay, yeah, I got my qualification in 2019. 

21:27 - Liz (Co-host)
And how is your career going as a teacher, whilst also managing narcolepsy too? 

21:36 - Josephine (Guest)
Okay, as for now, I'm doing well. I'm really coping. Not like when I started, because when I started I was on Ritalin and whenever I'm having an admin period, whenever I'm off, I'll have to take a nap, but now, since I started Consult consulta I'm doing really well. The only thing maybe the problem that I have is okay people asking you questions you look tired, did you sleep last night? Things like that and even my kids. Sometimes they'll ask me such questions. But even though they're asking me like that, I don't feel anything. It's maybe because of my eyes. They will see my eyes looking tired or sleepy, but for me I don't feel anything how many children? 

22:35 - Kerly (Host)
I don't have any yet. 

22:37 - Josephine (Guest)
Oh, I thought you said that your children oh no, my kids at school, my learners oh the children at school. 

22:46 - Kerly (Host)
They can see it. Yes, oh they're very observant, those little children. 

22:51 - Liz (Co-host)
Does anyone at your school know that you have narcolepsy? Any of the staff or the head teacher? 

22:58 - Josephine (Guest)
Yeah, they know Most of them. They know Even my principal. I told him about it and yeah, and they're supportive. 

23:12 - Kerly (Host)
Yeah, they are. That's good, that's really good. Do you think there are any stigmas? Are there any things that like negative things about having narcolepsy and living in the Nibia? 

23:32 - Josephine (Guest)
The only thing that we have here are experiencing. I think most of the people still. They are still not aware of narcolepsy. They don't know about it because even people that I told about my story, whether it's my colleagues or my friends, they will just tell you that someone is witching you. 

23:56 - Liz (Co-host)
It's like witchcraft or something ah, okay, is that quite common like for people to think that it's witchcraft? 

24:08 - Josephine (Guest)
yeah, that's what they think, because for me, even when I started, they took me to the traditional healers. Okay, we went there, I think, three times with these traditional healers. They'll tell you that someone did what to you and things like that. But then there was even one that told me that parentry I'll go mad, or things like that. I'll end up in the streets picking papers, or something like that. Oh, that's very uncomfortable. 

24:40
But now, before I went back for the second time, I started searching Because I was really confused. I did not know what is happening to me. Why is it only me? No one else is doing what I'm doing or experiencing what I'm experiencing. I looked for my health passport where the doctor wrote. I have to search where he wrote the first time I went there and also I started searching on internet like the symptoms that I'm having, that I'm having. And after I said I found this lady it's who? Julie, julie Flaker. Yeah, I found her in her story and the things were like almost the same thing that are happening to me and from there I was like a bit relieved. 

25:30 - Liz (Co-host)
Wow, how old were you then? That was 2016. So you had the original diagnosis in 2009, but then you didn't really believe that's what it was, or you weren't sure. 

25:50 - Josephine (Guest)
Okay, that time, 2009, I was still young, so I did not even read what was written there, what condition and things like that. So that's why I even believed when they told me that the medication that I was taking are not the right medication, even though I knew they were helping me. Even though I knew they were helping me. Yeah, then, later on, when life started to happen me, that is now when I started searching because things were really getting worse so what was happening? 

26:25 - Kerly (Host)
what was worsening? 

26:28 - Josephine (Guest)
end of 2016. That is when I said I decided to go back. Okay, yeah, and my reasons were, firstly, it's because of my studies, because I was repeating my second year then and I was just scared that what if I fail again this year? What will happen? Who is going to pay for me? And things like that, because my mom is unemployed. 

26:53 - Kerly (Host)
Yeah, do you have support groups and in the nanavia is there support groups for narcolepsy there no, no oh dear wow, there is nothing because, like I said, I started searching, even on facebook. 

27:11 - Josephine (Guest)
I found this group and I think that's where I met you. It's Kerry or who? Yeah, kerry, I don't know if I'm pronouncing your name correctly. That's where I met you. I think, yeah, and from that group I could see that I am the only one, I think, from our country, or even from Africa. So did that make you feel more alone? Even? 

27:32 - Kerly (Host)
from Africa. So did that make you feel more alone? No, not really. 

27:47 - Josephine (Guest)
You were happy to find more people. Yeah, I was happy to find more people. I could understand that also, it's a condition that exists. It's not like I'm going to go mad, like how the traditional healers told me how does it feel to be the only person you know with narcolepsy? 

28:12
yeah, it's not. Um, it's not good, because no one understands what you are going through. Even if you tell them your story, they don't take it serious or they'll make fun of it, and that's what I hate. Fun of it, and that's what I hate. People make fun of you and so on. Or they'll say they wish they could be sleeping like me, or things like that. Yeah, or maybe they'll say you look like you're drunk, or something, because they don't understand yeah, there's a lot of crazy people out there saying these things to people. 

28:58 - Kerly (Host)
It's not good. So with your teaching, do you ever get any episodes in class when you're teaching, or no? 

29:10 - Josephine (Guest)
For now I don't Wow, but when I started because I started working in 2022, I was still on retailing, but I always used to make sure that I don't sit. I always keep myself busy walking around in the class or things like that, because the moment I take a seat, then that is when I will start sleeping. 

29:40 - Liz (Co-host)
We all know that feeling. 

29:44 - Kerly (Host)
So how is your social life and like with your friends, do they understand? 

29:52 - Josephine (Guest)
Yeah, I don't really have friends. But the people that are close to me, yeah, I have two. But the people that are close to me, yeah, I have two. One friend, like where I'm working, is far from home. Okay, it's very far, yeah. So, yeah, the person that is close to me, she understands me. 

30:17 - Liz (Co-host)
That's good. Do you think having narcolepsy stops you making friends? 

30:23 - Josephine (Guest)
not really, since I'm not really that person that goes out to meet new people and so on. So it's really hard for me to make friends were you like that before the narcolepsy? 

30:37 - Kerly (Host)
You liked to stay at home and stuff. 

30:41 - Josephine (Guest)
Before narcolepsy I was still young oh yes, it's true, you were still young. 

30:49 - Kerly (Host)
Yes you're right, you weren't concerned about going out because you were still a child, that's so true. 

30:55 - Liz (Co-host)
Do you think if you didn't have narcolepsy, you would want to go out more and make friends or meet people? 

31:10 - Josephine (Guest)
Yeah, because now I think the other reason that I hardly go out reason that I hardly go out, I don't this feeling when you are like sleeping and among people or things like that, and people start making fun of it. What is it that I wanted to say? 

31:36 - Kerly (Host)
You're having brain fog oh. 

31:40 - Josephine (Guest)
And also the other thing is, whenever I'm going somewhere, like I'm in a car or something, and I end up sleeping, when I wake up I feel like I'm lost or something. Yeah, like I get lost easily. You think that you're going this direction, but you're going the opposite direction, so I feel like it's not safe for me to be going up and down Travelling around by yourself. Yeah. 

32:12 - Liz (Co-host)
And what kind of things do people say when they make fun of narcolepsy? They? 

32:21 - Josephine (Guest)
make fun of narcolepsy. Okay, like for me. They even used to call me names. Like when I was in school, I was given names and they were like there are certain teachers that used to send me out when I start sleeping. They'll ask me to stand up. Right, when I stand up, I will still sleep, and then they'll send me out to go and wash my face. They will be like making fun of it. What type of person are you like? You are still standing and you are still sleeping, and then the class will start laughing about it. Still, you go out, you wash your face, you continue sleeping. So it was just like other people were just making fun of it. It was like fun with them. 

33:15 - Liz (Co-host)
But then for it was not good and do you think that has affected your confidence telling people about your narcolepsy? 

33:31 - Josephine (Guest)
With telling people like mostly people that are close to me, I don't hide it so that they just know that, oh, if she's doing like this. But then when you tell people, then they'll start also like they are being observant and starting feeling pity or maybe be like oh, you look sleepy or things like that, which also I don't like. But then I don't have a problem telling people my condition. It's only that some people you tell them, but later on they'll be questioning you after you. They see you doing things and then they'll be like why are you doing this and that? But then the reason I told you is because I want you to know that in case this and this happens, you already know and what do you think needs to happen to raise people's awareness of narcolepsy in Namibia? 

34:37
yeah, that one I seriously don't know, because it's like we really need to raise awareness because most of the people like I say, the ones that I told about my condition they will just be saying no, it's not a condition. Even if you tell them that this is something that is not having a cure or something they'll say no, you just need to the to go to to traditional healers, go to other countries to get help, go to churches and so on so people need more awareness of yeah, that can't be fixed by traditional healers and things I didn't get that that's right. 

35:35 - Liz (Co-host)
So you're saying people need more awareness of narcolepsy? Yes, they need to know it can't be fixed by traditional healers. 

35:51 - Josephine (Guest)
Yeah, because even when I used to go back for follow-ups when I was not working, I used to go to the state hospital. You see that people that you find there that are helping you they are the one that works there in the hospital, but also them they know nothing about it. It's only the specialist that knows If the specialist is not there, and that hospital where I used to go it was only maybe one specialist. Yeah, so all these people that will help you with writing and so on, taking your story, recording it somewhere, they will still ask you this a lot of questions, because they don't know. Even if you tell them that I'm having narcolepsy, the person will ask you what is narcolepsy? And then you'll be like, but you are the one that did what nursing, or you are a doctor, but you still don't know. So it's like the people don't really know about this condition. 

37:01 - Liz (Co-host)
Yeah, and what is the main thing you would like people to know about narcolepsy? 

37:11 - Josephine (Guest)
what I want them to know is like it's a condition, it's not a witchcraft, that like they are thinking and it cannot be fixed, because for me there were even times that they took me to churches for prayers and so on. It's not something that can be fixed and it's not just about sleeping. There are other things that are involved. 

37:45 - Kerly (Host)
So do you have narcolepsy type 1 or 2? You have cataplexy or no? I have type 1. Ah, so you have cataplexy. Is your cataplexy in your face and your hands more, or do you fall? Is your? 

38:01 - Josephine (Guest)
catapulting your face and your hands more, or do you fall? I would say it's on my face and my hands, because there are times that I will just drop things. I remember when I was in high school. When I started, I could not laugh at a joke. The moment I laughed, my neck or my jaw would drop on the table. 

38:25 - Liz (Co-host)
And is it? 

38:25 - Josephine (Guest)
triggered by any other emotions for you. Yeah, Like I said, I could not laugh and I think surprise also, because sometimes I'll be on my phone scrolling something and then I see something on my phone and then you just see the phone will drop on the floor. 

38:54 - Liz (Co-host)
Yeah, that's a classic one, very common. 

39:03 - Josephine (Guest)
And how does the cataplexy impact your life? Oh, with catlexy now I don't really experience that for now. It was just common back then when I was not taking the medication. But otherwise these years I don't really experience it, maybe just once a month. 

39:17 - Kerly (Host)
Wow, wow, amazing. So it seems to me that your medication is under a lot of control. 

39:25 - Josephine (Guest)
Yeah, because also it will only happen if I don't take my medication. 

39:32 - Liz (Co-host)
And how easy is it to access medication for narcolepsy in Namibia? 

39:40 - Josephine (Guest)
It's not easy. It's not easy Like even when I started working here. I had to struggle the nearest hospital that I went to. I went there for my water because I was told where I was diagnosed, that I can get my medication at any nearest hospital. But then I went there and then they told me, no, we don't have such medication. You only find them in Oshakati that is at the north, now, where I came from, and now that I'm working in the south, you can only find them in Windhoek. That is the capital city now. So I have to travel there and that is where my specialist is. 

40:30 - Kerly (Host)
Wow, that's a long try. 

40:35 - Josephine (Guest)
Do you try? I'm actually scared of that you guys are driving. No, I'm actually scared of that you guys are driving. No, I'm not. 

40:45 - Liz (Co-host)
I can drive, but I don't have a car at the moment. 

40:51 - Josephine (Guest)
Oh, okay, I think the thing that made me scared also when I searched about who. When I found Julie, I read a part where she said there was a time she just found herself parking in the what In the college parking. She didn't know how she got there. 

41:11 - Liz (Co-host)
Yeah, that is a bit scary. 

41:13 - Josephine (Guest)
Yeah, yeah, because with me I don't drive. But then I would walk from where I was staying it's a town. I would walk from where I stay to town, like to the mall to go do my shopping because it was not like far, but then I would find myself there without knowing how I got there. Gosh, that's dangerous. 

41:45 - Kerly (Host)
Yeah. 

41:47 - Liz (Co-host)
That automatic behaviour kicking in. 

41:52 - Josephine (Guest)
Yeah, but now how do you call that? 

41:57 - Liz (Co-host)
Like automatic behaviours. 

41:59 - Kerly (Host)
Yeah, when you're doing something and you continue to do it, like driving or reading or writing yeah yeah, you fall. 

42:10 - Liz (Co-host)
Or falling, asleep, yeah, you keep going. 

42:16 - Kerly (Host)
It's really weird yeah, so how are? So? How are your nightmares and stuff now? Or hallucinations? Do you get those or no? 

42:29 - Josephine (Guest)
They're not that common anymore. I don't really experience them anymore. Oh wow, that's nice. But then they were worse. I would hear voices, and that time it was worse maybe because I didn't also know what was happening. Yeah, so I would hear voices, I would feel strange things happening to me, but up to now I don't sleep in a dark room. I always make sure my lights are on whenever I'm sleeping. 

43:05 - Liz (Co-host)
I like to keep a light on as well. 

43:09 - Josephine (Guest)
Yeah, it really helps. 

43:11 - Liz (Co-host)
Yeah, in case you have a nightmare, and then you wake up and you can see that everything is okay. And are you dating Josephine? No, what do you think about having a partner and how you would manage the narcolepsy? 

43:38 - Josephine (Guest)
Yeah with dating. I really don't know what to say about that, because I feel like I need someone that can, like, understand me, not judge me, yeah how does that feel easy to find? 

44:06
or difficult. It's not easy to find, and what is even making it hard is because I'm always in those. Where will I meet the person now? So what are your hobbies? My hobbies? I like sport. Sports, yeah, so mostly. Or let me just say working out. Mostly when I'm, when I'm on my free time, I'll be like I'll go for jogging or I'll do some workouts in my room. 

44:46 - Liz (Co-host)
How do you balance work and life activities? 

44:55 - Josephine (Guest)
It's not that easy, but then I'm managing. You're managing, yeah, because at work I don't really use my condition as an excuse for not doing something. I always make sure that if there's something that I need to do, I have to do it. If it is going to work for afternoon classes, I do that, so I don't end up not doing things and then given an excuse because of my condition. But then at home I'm struggling with cooking. 

45:43
I don't know how you guys are doing. I can't. I might stay up until late, but the moment I start cooking, I'm always burning my pots. I'm always burning my food, yeah. 

45:59 - Kerly (Host)
That is very normal. 

46:00 - Liz (Co-host)
You're not alone yeah, make sure you have a good fire alarm we're saying make sure you have a good fire alarm. 

46:20 - Kerly (Host)
I must make sure I have. What A good fire alarm they have. This thing you put in the ceiling and so when the place smokes, it goes. 

46:35 - Josephine (Guest)
Oh, I don't even know that. Yeah, yeah, I don't know it. I'm hearing it for the first time. 

46:47 - Liz (Co-host)
So I've got a question to ask you to finish off the episode. 

46:54 - Josephine (Guest)
I don't really have much to say, just to thank you for giving me this opportunity to share my story. 

47:04 - Kerly (Host)
it was such an honor for me and thank you for coming on. You're the first person we've had from the continent of Africa, very privileged to wave the Nenebian flag, and so we look forward to having your podcast out there so other people in other countries in Africa will come forward and share their story as well. Okay, okay, one second. 

47:31 - Liz (Co-host)
This is going to ask you one more question so my last question is if you could press a red button and get rid of narcolepsy from your life, so you never had it would you press the button, and why? 

47:56 - Josephine (Guest)
Yeah, I would do that Because I feel like my life would not be like this. I will not be here if it wasn't for narcolepsy. 

48:05 - Liz (Co-host)
Yeah, so you'd want to get rid of narcolepsy. 

48:14 - Josephine (Guest)
Yeah, I would like to do that. If it was possible, possible, then I would do it, is there? 

48:20 - Liz (Co-host)
anything that you like about narcolepsy or it's helped you to do. 

48:38 - Kerly (Host)
No no. 

48:43 - Josephine (Guest)
I don't think there's nothing good about this thing. 

48:49 - Liz (Co-host)
Thank you for your honesty. 

48:49 - Josephine (Guest)
It made me stronger. I like it. I had to continue pushing even though I had no hope or I felt like, especially with my studies, but then I did not give up up. I had to continue pushing until I got where I am. 

49:04 - Liz (Co-host)
Yeah, thank you for sharing your story today. It was really nice to hear about your experiences my pleasure so we like to end by saying happy napping everyone. 

49:25 - Kerly (Host)
Happy napping everyone. That's nice. Thank you, darling. Thank you. Narcolepsy navigators is produced by a team of volunteers working for the naps for life cic, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website wwwnapsforlifecom. If you or someone you know has a sleep disorder and would like to share your story on narcolepsy navigators, please email us at narcolepsy navigators at gmailcom. You can also support us by donating at the website. Happy napping everyone.