Episode Transcript
[00:00:10] Speaker A: Hello, welcome. You're listening to seasons two of Narcolepsy Navigators, brought to you by Naps For Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerry Boger, the founder of Naps For Life Narcolepsy and welcome to our stories.
Hello and welcome to seasons two of Narcolepsy Navigators. Hi, everyone. Welcome to Narcolepsy Navigators. I'm Kelly, your host. I have narcolepsy type 1.
[00:00:55] Speaker B: I'm Liz, your co host and I also have narcolepsy with cataplexy.
[00:00:59] Speaker A: And today we have Tambie and we're going to hear about her story. Story. Liz, how was your week?
[00:01:05] Speaker B: My week has been good. I had, so I had a holiday a couple weeks ago which was so nice, so relaxing in Greece and then I came back and went straight back into work and the warning signs are going off in my head like, oh, no, it's starting to get dark in the evenings and I hate how that, how tired that makes me feel. So I'm getting a bit nervous about the winter coming and the effect it will have on my energy levels.
[00:01:36] Speaker A: So Naps for Life is officially a cic.
[00:01:40] Speaker C: Yay.
[00:01:41] Speaker A: Started back at college and just sort of adjusting to that whole thing with college. And I'm doing a nightmare course with the sleep consultant recommended I do a nightmare course called image therapy or something. Image, wow. Yeah, it's very strange. I, I don't, I haven't found it useful yet. So I'm hoping my next lesson will be able to see how this is going to really be implemented in a nightmare. That's going to actually help. So I asked the teacher, has she ever dealt with people with narcolepsy before? And she goes, she has. So I'm just trying to be open minded and put my fingers crossed.
[00:02:21] Speaker B: So what is the aim of the course?
[00:02:24] Speaker A: To lessen your nightmares, apparently.
[00:02:26] Speaker B: Right. Through using strategies that you can then use when you're in a nightmare.
[00:02:31] Speaker A: Yes.
[00:02:32] Speaker B: Oh, that's so interesting.
[00:02:35] Speaker A: Yeah. So if it works. Yeah, I'll be telling everyone about it. Trying to be open minded about.
[00:02:40] Speaker B: And how far through the course? A year?
[00:02:42] Speaker A: Three. We've got two more sessions. I think there's five sessions and it.
[00:02:46] Speaker B: Was recommended by the hospital.
[00:02:49] Speaker A: Yeah, they're sleep specialists.
[00:02:51] Speaker B: Wow, that's a cool service. I didn't know that existed.
[00:02:54] Speaker A: Yeah. So Tammy, how was your week?
[00:02:56] Speaker B: Do you want to introduce yourself to our listeners? So tell us where your base, if you're comfortable, how old you are, and also what age you were diagnosed with narcolepsy.
[00:03:09] Speaker C: Okay. So my name is Tambi and I live in Peterborough. So I had an official diagnosis when I was 26, but my narcolepsy started when I was 12. So I'm originally from Zimbabwe. And when I was back home, those. When I was growing up, I was one of those children that my mom had to put a lot of effort. I don't know why she felt that I needed to be a lady, but she had to put a lot of effort and threatening to me to be a lady because I was always all over the place. So much energy. I was also quite good in school, did a lot of reading. And then at the age of 12, and I think just started changing. Falling asleep could even with. I'm at home with my sister and my cousins, people want to. They come to play, I end up falling asleep. If there are chores that have to be done in the house, I would always fall asleep. In my household, you would not dare even sleep in the afternoon if you are not doing your house chores, if you are not outside playing, unless you are unwell, then you were excused. But there was no excuse for sleeping during the day. So I would go and hide in there because I was so sleepy and fall asleep.
[00:04:28] Speaker B: Oh.
[00:04:29] Speaker C: Or if I was sitting the toilet, I was falling asleep. And then I started getting into fights at school because people started calling me names and at 12. And one of the teachers is the one that then said to my mom, there's a lot of change in this girl, that something is not right, and we just need to find out what it is because, you know, she's always falling asleep. One of the teachers that used to do the swimming then stopped me from swimming because she was like, it's not safe for you to be swimming when you. Because I would just fall asleep, even if I'm standing and they're like, no, no, no, no, we can't have that. My mom wasn't so worried about it. But then, you know, my other cousin and his wife that we used to live with as well, started noticing these things. And then one day, my mom, I was in the bathroom, happened to not lock the door on that particular day, and she opened the door and I was asleep in a tub full of water, and she panicked. And from that time right up until till maybe when I was about 16 or so, I was never allowed to have a bath with the doors locked. And if the I was having a bath, it had to be very little water. The water wouldn't even cover my bum.
[00:05:45] Speaker A: Wow.
[00:05:46] Speaker C: If I insisted that I was going to have a long bath, then my sister would have to be sent to sit with me in the bathroom. And it was just so intrusive.
And then the other thing as well that started happening was the hallucinations. So when I fall asleep during the day, when I have a. An attack during the day and I wake up, I don't know whether I'm waking up in a panic or what, but I'd always have this hallucination.
And my grandmother used to believe that, you know, when, if you're having an hallucination, you'd have to break an egg on top of the person for the hallucinations.
She used to believe that, you know, it would just scare away the evil spirits.
[00:06:31] Speaker A: So they started breaking lots of eggs.
[00:06:33] Speaker C: On your head every time I had the hallucination? Yes. They would literally just take a raw egg and break it on my head.
[00:06:39] Speaker B: Wow.
[00:06:40] Speaker C: And then I was screaming, I'd be very angry. And then she'd be like, oh, no, just rub it in your hair. Rub it in your hair.
[00:06:47] Speaker B: Oh, gosh.
[00:06:48] Speaker A: Hair mask.
[00:06:49] Speaker B: Yeah.
[00:06:50] Speaker C: The other, the good thing was it benefited me, as in my hair. But to this day, I hate the stench of raw eggs.
I cannot stand the raw eggs. And, you know, after a while, she then said to my mom, no, she can't still be having these hallucinations because this egg treatment should have worked.
The egg treatment is not working.
So at 13, I started high school and went to a boarding school. And oh, gosh, that was awful. That was the worst experience in my life, really, for the three years that I was in that school, I had the worst, worst treatment I have ever experienced in my life.
[00:07:40] Speaker A: From the teachers or the children or both.
[00:07:43] Speaker C: Both.
[00:07:44] Speaker A: When you joined the secondary school, the boarding school, did your mom explain or your grandma go with you and explain to the teachers that you've been having this sleeping issue previous?
[00:07:55] Speaker C: No, there was no, there was no diagnosis. You see, there's. So it was just like this was just happened in a space of less than a year, that this whole thing was escalating. And everyone was like, oh, no, she's growing. That's what happens when she's growing. And one of the church members who was actually medical professional, said in a psychiatric ward, says, maybe she's depressed.
It could be depression. Or my mom was like, so why would she be depressed? You know, and then because she's worried. Understandably. She was trying her best by telling people about the situation and trying to find out what is happening. And then everyone giving. They're giving advice. And then you'd also have people coming, interrogating. It was just, you know, asking you all sorts of questions, being asked. So have you been sexually assaulted? Have you been. Something must have happened to you that is now just making you fall asleep or that, you know, you'd rather not face. And you are choosing to sleep then.
[00:09:05] Speaker B: And I'm guessing there was very little understanding of narcolepsy or awareness of it at that time.
[00:09:12] Speaker C: There's none. There's none.
So what would happen? When I was in this boarding school, I then started having the cataplexy every time I was, you know, and it was mainly around negative emotions. If I'm very upset or if I'm not anxious, then on top of falling asleep and I'm having the cataplexy and when I fall down, I can actually hear what is happening around me. And you would have incidences where I would be whipped to get up or I can see that people are just around me. Some are worried. Some children are worried. Some people are just, you know, making a joke out of this whole thing. And you'd have teachers just saying, oh, just leave. She's just doing it for attention. Attention seeker, I was called. Wow. Wow. She's just an attention seeker. So just leave it. She'll get up on her own when she wants to get up. And at some point, on a couple of occasions, I was actually hosed.
Yeah.
[00:10:15] Speaker B: Oh, my God.
[00:10:16] Speaker A: Oh, my gosh. Waterboarding. That's taking it to another level.
[00:10:22] Speaker C: Oh, and you. You would, Kelly, I would have you know that it was actually a Seventh Day Adventist boarding school.
[00:10:29] Speaker A: Wow.
[00:10:31] Speaker C: Yeah. It was a Christian boarding school.
[00:10:33] Speaker B: That's so dangerous to be faced down when you're in a cataplat. Peptic attack.
[00:10:40] Speaker C: Panicking because someone has got a hose on me is not. Is even making me worse. Cataplexy worse.
[00:10:49] Speaker B: Yeah. And the risk of not being able to breathe or inhaling water in that situation.
[00:10:55] Speaker C: And so the headmaster's wife then started saying to my mom, oh, I'm going to. We'll have to take it with the gp. Something is wrong. We'll have to take it to the gp. That was when I was in the second year of high school and during the holidays, my mom took me my gp, who then said, oh, she's now putting on weight. So it could just be the weight that she's putting on. That is making her fall asleep. And my mom was like, actually, no, this whole thing started when she was about 12. Or maybe it's the hormones of puberty, you know how the girls are like. And my mom said, no, I've got four girls and she's the last of the whole. None of her sisters have been through this. So I think a year later, the doctor actually said to my mom, do you think it could be the vaccines? That's because we used. We used to have. When we were 12, we had.
We used to have like three vaccines that they gave us. One, there was a German measles and something else, and rubella, I think it was called.
It's like, you know, it could be one of the vaccines. She could have just been one of the very few people that could have had a negative side effect to the vaccine. But then they ruled that out. And so when I was on my holidays, my mom is taking me to GPs and specialists. When I'm at school, a headmaster's wife is taking me to gps. And we had one of the teachers, she used to teach a religious education. And she was an Australian lady who. She came back, I think this was when I was in year two. She came back from her holidays. After the holidays, she came back from Australia and she had done some research around diet.
So I was now having a special diet. They had decided that they were going to remove wheat from my diet. So from before breakfast out, while others were having bread and stuff or corn porridge, I would have oats porridge. I didn't have any bread for lunch when they were having rice. And so you can imagine this is in a dining room in a boarding school where already I'm being bullied in the classroom for falling asleep all the time.
And my grades have. My performance has been extremely affected. And then I'm in the dining room where back then, because I was young, I didn't actually see it as any help. I felt like I was being targeted.
And so they would bring this special diet for me on the table and I would have to have a notebook. So this lady said to me, I'm giving you this notebook. She gave me a very pretty notebook and a pen. Every time you fall asleep, I want you. When you wake up, I want you to write that you have fallen asleep. I know you. You will not be able to count how, calculate how long you were asleep, but I want you to write when you're falling asleep. And I also want you to write everything that you're eating. And then maybe after a Month or so. We will see if there's any change. There was no change. Then they're like, oh, she needs to exercise. The same lady, she was so dedicated. She would come to the girls dormitory in the morning, every morning to take me for a job.
[00:14:11] Speaker B: And how did you feel towards this woman? Did you feel like she was trying to help you or were you like.
[00:14:18] Speaker C: Yeah, I felt in the, you know, initially when she was doing this whole diet thing, I, I wasn't happy with it, but I then every time I would call out, speak to my mom, my mom would say to me, oh, Mrs. Butcher said this. Oh, Mrs. Butcher said that, or Mrs. Butcher said the other. So she would always call my mother back home to feedback to my mom what is happening or what it is that she's trying out. She was one person that I felt really understood me. Her and the headmaster's wife, Mrs. Birkenstock, she was also very compassionate. She would give me chocolates, chocolates.
She used to feel that maybe I'm low on sugar, that's why I'm falling.
[00:15:02] Speaker B: Asleep and she's silver lining.
[00:15:09] Speaker C: Don't let Butcher know that I'm giving you any sweet misses but let's stop sugar, let's stop wheat, let's stop. You know, this. The too much starch. That wasn't helping. So the jogging only happened maybe for a week because while I was jogging, I would have a cataplexy fit.
[00:15:34] Speaker A: You reckon it was from the stress of making you exercise?
[00:15:39] Speaker C: I think in hindsight it might have been, you know, from the stress or just the anxiety of the whole situation.
[00:15:46] Speaker B: Yeah.
[00:15:51] Speaker C: My, My sister, My older sister and I were at this boarding school. So in year three, she was doing her gcses, we used to call them all levels back then.
And when she finished the year, she finished her all levels. I was now doing. I was in Form 3 and I told my mom that I'm not going to go back to that school without on my own.
And I remember my mom saying, oh, everyone went to that school. So that is the school you are going to go to. You don't get to decide which school you are going to go to. So we.
I was like, oh, okay.
Come the start of the year in January, just after Christmas, in fact. Yeah, it was, you know, the week, the Christmas week, just after Christmas, just before New Year, she's like, oh, we need to go and, you know, do the.
I need to take you. Because the school used to provide their own uniform, so you'd have to take measurements and everything to be Sent to the school that had to be done before January so that by. By the time you get to school, you've got your whole set of uniforms done.
I was like, you don't need to take any measurements because I'm not going there. Just like, well, you are going back to school. Like, well, I'm not going to school.
It's like, well, I'm not looking for a school for you, Tambi. If you are not going to go back to that school, you're going to sit at home. And so when January came, I spent two weeks at home because I would not go back to the boarding school. And my mom was like, well, I'm not going to look for a new school for you.
[00:17:26] Speaker A: How did that make you feel?
[00:17:27] Speaker C: It made me feel very angry because she was my support network. She was the one person that was always. She would call me Sleeping Beauty. She was, you know. Yes. She would always call me sleeping. She was. So she never made me feel awkward about the sleeping. So that made me feel very angry. And then when she realized that I was not going to go and I told, you know, I told her that I've been. I'm being mistreated in that school. And she's like, whoa, why would they do that to you? They've never done that to anyone. Everyone is so nice, even when I speak to them about your sleeping. And also, one thing that also made me very angry is that my sister would never say this thing. What was happening to my mom at school. It was only when then, or one day my uncle passed away. Like, oh, what is she doing here? She's not in school. And my mother said, oh, yes, because she's refused to go back to school.
She's deciding that she should tell me which school she should go to. And, you know, I just needed to understand that. It's not. It's not like that. It doesn't work like that. My mom was very firm. So my dad. My dad died when I was about 14 months. So she was widowed at 36.
She never remarried.
[00:18:40] Speaker A: Oh, wow.
[00:18:40] Speaker C: And. Oh, yeah. So my mom was very strict and she would always tell us that I'm the father and the mother of this house. So I have the last say.
So my uncle said to her, so what is going to happen? Because she is a mini Betty. Because my mom was. My mom's name is Betty Betty. She's as stubborn as you, so she's not going to get an education. So that's when they're like, oh, well. Because she keeps telling. So my mom was like, well, she keeps telling stories about how she's being mistreated at school and stuff like that. And my uncle was like, but that's not even.
Why would she be telling you these stories? Where is her sister? So she, they've called my sister and my uncle is asking my sister what happens? What has been happening at school with yours with Tambi? Oh, and then my sister cried and she started telling them all the things that was happening at the school.
[00:19:34] Speaker A: Wow. It sounds like she was going through a lot of stress as well.
[00:19:37] Speaker B: So you were saying Tambi about say your uncle came in.
[00:19:41] Speaker C: Oh, yeah. So anyway, so, you know, they got to find out that, you know, things were not.
Things were as Tambi was saying.
So we started the search for a new school and all the schools that my mother would have wanted, Christina, she believed in private education and stuff like that. They were only awfully booked. So I had to retake my year three, which was the only way to get, to get into. That was the only place in one of the last schools that she tried.
It was year three. And you know, she's like, oh, you know, since you haven't been doing very well, you might as well retake it. And in my, when I was in my boarding school, I was one of the young ones anyway, so that worked out.
[00:20:37] Speaker B: How did it feel to have to retake the year?
[00:20:43] Speaker C: So having to, you know, when people, when people hear that, oh, she's doing her form three again, it sounds like, oh, she had to repeat because she failed or there's always speculation of, to the reason why this happened. So it was a bit uncomfortable for me to go and retake the year knowing that my friends are already ahead. But I understandably, I wasn't even doing well in any of my subjects anyway and I was in a new school, so no one, I didn't know anyone there.
But the good, the positive thing was before I started in this new school, my mom had to go and sit down with the head teacher and just say, you know, this is the situation. My daughter has this, we don't know what it is, but she's always falling asleep. So she is still falling asleep.
And this is the situation. This was her experience in her last school.
So the school I went to, I went to a school called Queen Elizabeth High School.
And in my town, the head of the headmistress of that school was well known for her strictness and, you know, more or less quite ruthless.
So she just said to my mom, oh, just leave that one with me. I would Definitely make sure that that won't happen in my school. Wow, Gary.
Yeah. So she's like, oh, no, that, that certainly won't happen in my school. No pupil or teacher is going to mistreat her.
[00:22:33] Speaker B: Oh, that's good.
[00:22:35] Speaker A: I thought she meant the opposite.
[00:22:37] Speaker C: Yeah, yeah. Oh, no, no, no, no. So I had.
When I went there again, she was also a believer that it must be sugar. The problem is sugar. So she would always say to me, if I'm feeling. Her name was Mrs. Clark. If I'm feeling as sleepy, I must excuse myself and go upstairs to her office and she'll give me a chocolate. That should fix the problem. Yes, that should fix the problem. And when that wasn't working, she's like, no, it's coffee. Coffee is what she needs. And my mom was like, oh, no, no, no.
We don't even drink caffeinated tea in our house. So like, no, I think coffee is a bit much. Let's.
If. So then I started seeing a specialist who was.
Initially, he referred me to a psychiatrist because there's like, oh, no, there's just something. I was given antidepressants, Ritalin.
He even. Yeah. Because he, he was like, oh, it could. The. The psych. The psychiatrist came up with adhd.
[00:24:02] Speaker A: Okay.
[00:24:04] Speaker C: And my GP went back to our doctor and my doctor was like, oh, she's. She's anything but hyper. So I don't know what this psychiatrist is talking about that it's adhd.
So we had the anti. Antidepressants.
I had the ADHD medication, some medication that the GP is trying, other medication that somebody who, who knows someone who told them that they know someone who knows someone who's falling asle sleep has recommended.
By the age of 16, I developed ulcers.
[00:24:47] Speaker A: Oh, from the combination of all of these medications.
[00:24:50] Speaker C: Yes.
[00:24:52] Speaker B: Is that stomach ulcers?
[00:24:53] Speaker C: Yes, stomach ulcers.
[00:24:55] Speaker A: Did you feel any different after taking these, Any of the medications Ritalin started.
[00:25:00] Speaker C: Giving me increasing my, My nightmare and sleep paralysis. At that point, they didn't even understand, didn't even know anything about sleep paralysis. Oh. So that was the other thing, you know, when I told you that I started this whole thing of falling asleep and the nightmares at the age of 12.
[00:25:16] Speaker B: Yeah.
[00:25:17] Speaker C: My mom would now have me sleep in her bed because on top of the nightmares, I was sleepwalking and my mom was like, oh, no.
So I would sleep in her bed. So if I wake up, my mom wakes up and they'll be like, oh, you know, don't. Don't wake her up. If she's sleepwalking. Don't wake her up.
And then there was an incident where I'd been sleepwalking and went to the door, tried to unlock the door. But because the doors back home, you have to bolt the doors, you had to have. The screen is locked and bolted and then the main door is. So when my. One of my cousins told my mom, because my mom wasn't around there and said, oh, you know, this is. Was the situation that happened last night and my mom was like, no, this is really getting dangerous. So she would lock her bedroom door. So if I'm sleep walking and then I get to a bedroom door and then it's unlocked on a couple of occasions that I do actually remember what was happening. Woke up on the floor in my mother's arms on the floor. Both of us slept on the floor.
[00:26:26] Speaker A: Wow.
[00:26:27] Speaker B: Because you slept walk, slap walk and then just fall asleep?
[00:26:31] Speaker C: I think so, yeah. I think that was. Must have happened. And then she obviously just, I don't know, maybe just held me and.
[00:26:39] Speaker A: Yeah, sounds like she was very supportive.
[00:26:42] Speaker C: She's a superman.
Oh, yeah.
[00:26:47] Speaker B: Your biggest advocate.
[00:26:50] Speaker A: So at what point did you get diagnosed?
[00:26:53] Speaker C: I came here when I was 26 and one of my sisters, she said when I registered at the GP and had to tell the GP about this falling asleep business and did GPD know what I was talking about. And Tambo had done her research and she went, she printed out. This was in 2002, she came back from work and she said, you need to make an appointment with the GP and I want you to take this print out to her.
So she had printed out about narcolepsy. So she was in finance and someone she was working with had kind had mentioned something about narcolepsy to her. Narcolepsy and cataplexy and. But then I was about 26 when I came. The cataplexy wasn't so much as in falling down, but I still had the muscle weakness and it would get worse when with laughter. Couldn't control my muscles. So if I'm sitting, you know, you just. You do have categories. So if you're not falling down, you're not just a muscle weakness. You understand what I'm talking about? Yeah, yeah.
[00:27:56] Speaker A: We are knees buckling. Yeah, exactly.
[00:28:00] Speaker C: Water.
[00:28:00] Speaker A: But you're not in water.
[00:28:02] Speaker C: Yes, yes, exactly. So even if I'm sitting down and I'm not necessarily going to fall down. So anyway, she's given me this printout, I've taken it to the gp. This was in Croydon and I said well, I'm back again and I've got a printout about narcolepsy. And she says to me, oh, you know, yesterday when you left, I kind of thought that it could be narcolepsy. But I have been a GP in my 10 years of being a GP. I've never treated anybody with narcolepsy. I did study about narcolepsy in my medical school, but have never come across anyone with it. So, okay. Left her with a printout that was around 2 in the afternoon. She called me at 8 o'clock the next day and she said, I've got, I want you to go and see. I read the printout and spoke to a very good friend of mine. I was in, I was in medical school with him. And so I need you to go and see him. And his name is Dr. McDonald's. Mr. McDonald. So you're going to go to St. Thomas Hospital and you just say to he, he already knows, I've already spoken to him that you're coming. Having had this sleeping situation from the age of 12, I sat in that man's consultation room and for the first time in my life, I spoke to somebody who actually understood what I was talking about.
[00:29:31] Speaker A: Wow.
[00:29:32] Speaker C: And I just cried and cried and cried and I was like, you know, it's the first time that someone actually understands, you know, someone actually gets what I'm talking about. It's not like I, because I had not just gotten to a point of not talking about it because I'm now conscious that people don't understand what I'm talking about. So it's either I'm making it up or I'm just, you know, attention seeking. And he's like, oh, yeah, you have, you have classic textbook narcolepsy. That's, that's what it is. So now that we've had this chat, we will, you'll have to go back to your GP and we'll have to now see, see you through the formal channel. So she'll have to do a formal referral to me and my clinic and then we'll have to see you. And so that, that might take a while. So, yeah, it took me a good, almost, almost three weeks before I went there. And, you know, it's like, okay, this is what it is. So we are going to do. So the sleep study back then was at St. Thomas Hospital.
She's like, okay, so we are going to do what is called a sleep study and in the meantime, I'll just put you on Modafinil. So I Started on Modafinil. I think within week it was just the stomach ache.
[00:30:50] Speaker A: Wow.
[00:30:52] Speaker C: It just caused me pain in my stomach, headaches. And I didn't quite understand, quite.
I could not actually explain what was happening.
You know, like butterflies or whatever it is. Then I didn't even know, you know, I would like. No, it can be anxiety, whatever it was. Obviously by then, it was always the sleep study then obviously confirmed or thing that. Because people didn't understand that. Also, if you are always falling asleep, why do you then say you can't sleep at night? How does that work?
Obviously it's not a medical condition. It's just that you're not sleeping at night. You should just sleep at night, go to bed early. Or everyone would accept the people who've got the condition. Everybody knows how to treat it or knows. Knows what to do. I remember there was. There was a guy at one of the pastors in my church, so his wife. That was before she actually had a cancer diagnosis. I remember her saying to me that, have you tried losing weight? Because the sleeping is because of your weight. It could be because of your weight. So if you just try losing weight or when you're falling asleep, can you not just stand up?
[00:32:07] Speaker B: So ignorant.
[00:32:10] Speaker A: Like, it's interesting because it's. It sounds so simple, like you wouldn't have thought of it yourself.
[00:32:15] Speaker C: Yeah, yes, yes.
I was like, well, I can actually do that. So, yeah, just. Just try standing up. I said, okay, I'll do that.
And. And oh, you have to chew gum as well. If you're chewing gum, you're not going to fall asleep.
[00:32:32] Speaker A: I haven't heard that one. That's a new one.
[00:32:35] Speaker B: Yeah.
[00:32:36] Speaker C: So I was like, oh, okay. So to start with, I cannot chew gum because of my stomach ulcers.
I'm like, oh, okay. But maybe it could be the stomach, the ulcers that are actually causing sleeping. Because I know of a relative of mine in Jamaica, and at this point I'm struggling to be polite.
So I then had to say to her, so how do you deal with your narcolepsy? What do you do? She says, no, I don't have the narcolepsy, so you're not qualified to talk.
You can't tell me what to do because I've had this condition. So you do not have the condition. You don't tell me what I must stop doing and what I'm not doing. Right.
[00:33:20] Speaker B: Yes.
[00:33:22] Speaker C: From a very young age. And anything and everything that you are suggesting has already been tried. Do you know, get the point where you'll be pinching yourself to keep awake.
[00:33:34] Speaker B: Yeah.
[00:33:35] Speaker C: And I would always be on the bus or on the Tube. I can see that. This is my next stop. I have a moment. Because that's what my mother used to call it. A moment. I have a moment, two seconds. By the time I wake up, the doors are closing.
[00:33:49] Speaker A: Yeah. You just missed the stop.
[00:33:51] Speaker C: Yep. So I have to then go back, get out of the train, try and go back. I have been given tickets on. On the train. I've been given tickets twice because I have woken up past my stop and this is not on the underground, but this is like on the overground trains. I've walking up past my stop, so I have to go through the barriers to go to the opposite side. And it would seem like you're just wanting to jump the barriers. Ah.
So people cannot understand that. How did. Okay, so you fell asleep. Well, that's. You should have known not to fall asleep.
I have lost jobs and couldn't even study because I was always falling asleep. So I then worked out that if I'm doing this care work because I'm always on my feet.
And so when I started doing this care work, I used to. I used to work in this place in Barnett and we used to have like a sleeping room, a staff sleeping room. It was so convenient because when I'm so tired because I'm such a clean freak and the staff know that the residence rooms had to be perfectly clean according to TAMBI standards. So if I'm having a moment, I would just say, I'm going to clean so and so's room.
[00:35:20] Speaker A: Oh, and no one would make any difference.
[00:35:23] Speaker C: Yeah. Because back then, between 2004, 2008, I didn't have. You know, you'd think that if I have to tell them that I've got a sleeping condition, or if I have, I've got this situation, then no one is going to employ me.
And then even if they still keep me on the job, I'd never had any reasonable adjustments at the workplace.
[00:35:48] Speaker A: Wow.
[00:35:49] Speaker C: The one place that they said. So when I. One of the managers who was there, he was quite. He was such a good guy. And when he was leaving, because I'd never. I didn't declare this when I did my application when he was leaving the place in 2009, he then said to me, you need to tell HR about this, because my worry is because staff are already complaining about it, HR don't have it documented that you actually have an illness that you are actually being treated for. And then the modafino wasn't working. I think I got to something like 400 meals or something like that and then ended up having to stop it. So he was like, you know, if they know that you taking your medication or they don't understand it, they're just going to create problems for you.
So I then had to do that. But, you know, I still had to come up with ways of trying to keep away. The worst is falling asleep when you're waiting for the bus and you're standing.
[00:36:48] Speaker A: Oh, yes, I can just imagine that.
[00:36:51] Speaker C: Yeah.
[00:36:52] Speaker A: And it's only been a few seconds that you were asleep, but you've missed the bus.
[00:36:57] Speaker C: Yes.
And you know in London, when the bus driver is going, he's going, yeah.
[00:37:03] Speaker B: They're not waiting.
[00:37:05] Speaker C: No, no. And you're just like, oh, my goodness. I was just here, surely.
Oh, I think I could write a book about all the adventures of traveling with narcolepsy. So because of that, I've never been able to drive. Never been able to drive. I keep failing my airport scale. No, what's that?
[00:37:28] Speaker A: What's an Episcopal?
[00:37:30] Speaker C: The airport scale. The sleep airport scale.
[00:37:33] Speaker A: Oh, the first one that they give you.
[00:37:35] Speaker C: Yes.
[00:37:35] Speaker A: Yeah.
[00:37:36] Speaker C: Yes, yes. So mine is always. I think it's only this time around in January that it was less than 15.
Yeah. So hopefully I can start applying for my drivings because this. This business of living in a village and not driving is just not doing it at all. Yeah. I actually got to. I think my Second consultant was Dr. Mooza. He's a really good guy. Yeah, he's. He's really good. But for a while I've just been seeing locums. And the one frustrating thing, even with nhs, even in this day and age, is still having to repeat your story because you've got a new consultant. That just. That just really frustrates me.
[00:38:20] Speaker B: Yeah.
[00:38:20] Speaker C: So last year I just had to say to them, I need to see Dr. Moza. I'm not. Or. Or I just don't bother, you know, having these telephone consultations at the end of the day, because they're just telephone consultations. You're not doing anything for me. Keep talking about changing my. Because I'm now on Dexon Fitamin. I've been on Dexon Fitamin for 10 years now. And that works.
[00:38:40] Speaker A: Oh, that works.
[00:38:42] Speaker C: Yeah, that works.
[00:38:43] Speaker B: Do you still have to nap during the day or not at all?
[00:38:47] Speaker C: Sometimes I have to nap during the day and sometimes I. Now and again, I. I will. I will fall asleep. But thing with the Dex amphetamine is because I've been taking it for a long time. It is now just induced anxiety, which is one of the side effects. Yeah. Which that's really awful. And if I. Because I have to take two doses, I'm on a high dose now, which I've been on since 2017 thereabout. So I take about 20 meals twice a day. So if I take my last dose anytime after 1pm because that's again, the Dex amphetamine also comes with insomnia.
[00:39:29] Speaker B: Oh no. It's so annoying that so many of the narcolepsy medications that keep you awake in the day can then affect your nighttime sleep.
[00:39:40] Speaker C: Yep, yep. So because I've taken it for so long, I've actually worked out that even if I am tired, if I have not taken my second dose, I'm not going to take it anytime after one in the afternoon or two because then it's going to keep me up maybe right up until 11, 12, midnight. And then even if I fall asleep, you know, the usual narcolepsy situation where you can't maintain sleep and. Yeah. So you know, the sleep paralysis as well. That is another nightmare. But I have worked out that I don't. So I sleep with a light on. I've got a night, you know, just the bedside lamp on.
[00:40:21] Speaker B: Yeah.
[00:40:22] Speaker C: And either if I've got my classic music or my jazz, but I just have to have some music in the background.
[00:40:29] Speaker A: And you find that helps?
[00:40:31] Speaker C: Yeah, it might be in my mind, but it helps. But now I don't have also have. Does anyone have the olfactory hallucination smell? Yes.
[00:40:45] Speaker A: Yes.
[00:40:47] Speaker C: For a long time I didn't actually realize that it was hallucinations. I would always. It's either I'm smelling like a stale nicotine or like a leathery smell. And every time I would always smell that. So when I started doing the living job in 2020, after going around maybe two or three clients, because if I'm doing it as a live in care, I live in the client's home.
[00:41:15] Speaker A: Ah.
[00:41:16] Speaker C: It then dawned on me that how am I smelling the same smell that I smell at home when I'm in this woman's house and then I've now in this place and I'm still smelling the same. The smell. Anyway, social life and family. Not. You've got family members who actually don't understand what's happening with you and then you have friends that do understand or appear to be very supportive. But sometimes the social demands can also be too much.
[00:41:50] Speaker B: Yeah.
And so do you find that Your, your family and your friends and not don't understand as much as you would like.
[00:42:01] Speaker C: I have, you know, so because of my experiences, I was growing up with this whole thing. I don't tend not to make a lot of friends. So if I've got friends, maybe they are just two or three people that I call friends. They do understand. So. But they'll be like, oh, no, let's go out or let's go to this party or let's go to this place. And they're like, I just can't do that. No, don't worry, I'll be with you. I'll make sure, I'll make sure, you know, you're okay. And it's nice, it's very good. But the downside is that support is they also don't actually understand that that kind of socializing is also too much for me.
[00:42:39] Speaker B: Yeah.
[00:42:41] Speaker C: And even though you are there to support and nowadays I've gotten my confidence back, that I do actually tell people that I've got narcolepsy because before.
So, you know, you get people who are going to tell you that when you tell them that you've got narcolepsy. It's the questioning that to me becomes too much, that sometimes I can't deal with too much explaining all the time. Having to explain to people that I'm falling asleep because I've got narcolepsy. Or you have people who, they mean it in a compliment as in a good thing, you know, like, oh, you're so intelligent. Oh, you're so well read. Why don't you just go and study? Why don't you just get a degree? I passed that level. Or if I'm going to go back there, I would need a lot of support because at the point where I should have done it, I was not able to do it. And then when the medication started working, my confidence had already been eroded at that point. And, you know, just thinking that I have to sit in a classroom environment where I might fall asleep. I don't know if any of you have experienced it where, whether you're in a training, a work training or something and you know, you have a moment and you get the person up there saying, oh, am I boring you?
Or being told, oh, how rude, how rude of you to fall asleep.
[00:44:05] Speaker B: Yeah.
[00:44:05] Speaker C: And then you have to explain to people that actually it's not like that I have. It's sometimes I just find it so overwhelming.
[00:44:13] Speaker B: It's so tiring having to always advocate for yourself in every new situation, with every new person you've put.
[00:44:22] Speaker C: Yeah, you've. You have definitely articulated it. Well, it's just advocating for yourself because no one is doing it.
And then there's. You get to a workplace where they say, okay, they're going to give you. I worked in a housing, very big housing company that after having to go through occupational health, they then said, okay, we'll put in reasonable adjustments in place. The room that you're going to go and take your nap in. Sometimes somebody is using it to. For key work meetings.
[00:44:55] Speaker A: No.
[00:44:56] Speaker C: Yep. Then they say, okay, we've reviewed it. It's not working. So you can take your lunch at a set time where you know that at least by this time I must be feeling tired. Then you take your lunch there and then you can have a nap. Went back to HR. HR said you are entitled to 30 minutes lunch break. So if your manager is saying you should take your nap within your 30 minutes lunch break, she's not adjusting anything because it's within your lunch break that you're entitled to have. So she's not adjusting anything for you. Yeah. So that's another thing as well. I don't know how or when because it's not just an eclectic. Even people with other unseen disabilities still struggle in workplaces.
[00:45:45] Speaker B: Yeah.
[00:45:46] Speaker C: Yeah.
[00:45:47] Speaker B: And what keeps you going through times that are hard?
[00:45:52] Speaker C: Well, my mother used to keep me going, but now that she's late, I struggle.
And I think, I don't know, do I, whether I'm giving up or.
Sometimes I just feel like I'm just floating, you know, I'm just. It's just taking it one day at a time. Really?
[00:46:11] Speaker A: Yeah.
[00:46:11] Speaker C: In moments like this where I don't have a job, I just then try and do things that I love and motivate myself to get out of bed as if I was working. Because that's the other thing that you, you. Then I don't know whether you guys experience it, but with me, I experienced that if I, because of the narcolepsy, if I'm not going to maintain my routine of waking up at the same time, if I then start waking up later, it means that when I, when I start working, I'm struggling to keep awake the times that had been falling. Lying in bed.
[00:46:48] Speaker A: Yeah, definitely.
[00:46:49] Speaker C: So now and again I will have a lie in and you know, like today I woke up at 10, but if I'm going to be waking up at 10 every day, they're woken up in a random times. I find it then just disturbs the routine.
[00:47:03] Speaker A: Yeah, routine is very important with Narcolepsy.
[00:47:06] Speaker B: And what do you think, what do you wish that people knew about narcolepsy, whether it's in the workplace or in your social life or just in general, that would make things easier for people.
[00:47:19] Speaker C: Like us or people like you in my community. I just wish that people would understand that narcolepsy does actually affect black people because you get, oh, that's such a white thing in a. Comments like that.
Where did you get. Where did you get that from? Are you not just now, you know, getting all these diagnosis. Because other people get this diagnosis? I think the people that I come across have never actually come met a black person with narcolepsy, or if they have met that person, they don't have a diagnosis to say that they've got narcolepsy. Because I've come actually come across two people in my Zimbabwean community. One of them actually had a child. She was referred to me through somebody that I worked with years ago, because she just found me on Facebook and said to me, oh, you know, someone said, I must speak to you because my son is going through this. And she described everything. And I said, oh, my goodness, that is so narcolepsy. The boy was about 14. And I said, well, you know, this is what you need to do. So I think some people just haven't come across that. So I just wish that people do. Would understand that our bodies are made the same. So it's very possible that a black person will also have narcolepsy and also to do their research and understand that my weight, yes, I could actually do something about it, but some of my weight is also a side effect of the narcolepsy. Yeah. And even though I can lose weight, it, I. It means that I have to work 10 times harder as the other person, as the next person. So cray. You know, cravings of starchy foods and sweet foods is, as Dr. Musa told me, is also caused with the hormones that. That has to do with the narcolepsy.
[00:49:20] Speaker A: Yes.
[00:49:22] Speaker C: And also in our community, as narcolepsy people, we need to be supportive to each other, get in touch more. Kelly does. I know Kelly's really good at that.
[00:49:33] Speaker B: I'm a bit more quiet on the scene.
[00:49:37] Speaker C: Yeah, well, I am as well. I think for me, I just.
I find commitments very difficult. Today I had to set the alarm, say that, okay, I have back home by such a time. I have to be indoors by such a time. And I have to psychologically emotionally psych myself up. And for socializing. Yes.
For doing certain Things, those are the things that people also don't understand.
[00:50:04] Speaker B: Yeah.
[00:50:05] Speaker C: That if I turn up, I have made such a great effort and when I'm out there, please do not just start asking me to be on the dance floor. If I go to the parties or don't ask too much, you know, I'm here. It's, it's enough that I've already made this effort to get there, you know. And.
[00:50:39] Speaker B: So if you could press a red button and get rid of narcolepsy and never have experienced it, would you do it? And why?
[00:50:56] Speaker C: I, I guess I would. I, I would want to do it if it means that, you know, I, it would take me back in time and I would have to catch up on all the things that I missed in life and erase all the negative experiences that I had.
But if that's not going to change anything, then no, I wouldn't actually press the red. Actually the answer is no, I wouldn't. I wouldn't.
Because as much as it is a condition that I have that does come with these challenges in day to day life, it doesn't cost me much pain.
And with the having had narcolepsy, I think it has actually made me a person who is more empathetic and sympathetic to other people. So I have observed that it doesn't. I don't need somebody to tell me their whole story for me to just be, to understand what is happening. And as I've grown older with this condition and you know, reflecting on things that have gone wrong and right, which I do a lot, I would not change it because I think it has given me the opportunity to be a better person. Yeah. Would I be the person I am if I didn't have this condition or if I have had an. Experienced the things I have had? I don't know. But yeah, I wouldn't really take it away. It's something that can't be treated. I would actually try and see if something can be done about it, but I wouldn't.
[00:52:46] Speaker B: Oh, thank you so much, Tambi. It's been so interesting to hear your story and wow, you've really been through a lot and I'm sure our listeners will love hearing just all your, about all about your experiences.
[00:53:00] Speaker A: A lot of people would not have been able to endure the things that you enjoyed, especially as a child. Like, you know, that's really was. I'm glad that you're, you, you had that support there from your mom, you know, I'm so glad that you had that.
[00:53:16] Speaker C: Yeah. Oh yeah. My mom was Very supportive. You know, apart from calling me Sleeping Beauty, she would always come up with silly things to say, you know, like if she walks in the room, she'll be like, oh, my goodness, the telly is watching her.
The telly's watching her again.
Yeah, but which is one thing that I do actually admire about people like you, Kelly and Liz, where you are confident enough to go out there and advocate for people with narcolepsy and educate people.
Because this, that is all that is lacking really, in our community.
[00:53:58] Speaker A: Yes.
[00:53:59] Speaker C: Is educating people on unseen disabilities.
Because once you say it's a disability, the first thing people are going to try and say, but there's nothing wrong with you. Yes, yes. There's nothing wrong with you. So, you know, when I'm on. The one thing that I actually works as an icebreaker for conversations around narcolepsy is the badge that you sent me. Oh, yeah. Because I've got it on my winter coat. It's just the naps for life. So people were like, oh, yeah, what is that about? Or you get people actually saying, oh my gosh, what's. Is that about sleeping? Yes, about narcolepsy. Yes. And you know, you. Then you get to. It gives me the opportunity as a one to one to educate people about it, but I'm not, I'm not yet confident to.
That's so brilliant.
[00:54:53] Speaker A: I like that.
[00:54:54] Speaker C: Yes, it's. It's something that is very useful. Very useful.
[00:55:00] Speaker B: You're definitely doing your bit. Educating people in Petersburg.
[00:55:04] Speaker C: Yes, everywhere on the. Because I use public transport, on the trains mainly is when people be asking you about, oh, what's, what's that about? And one thing, you know, Liz, when you asked me that if there's anything that's.
I would want people to know about, you know, narcolepsy is.
I've had a number of people saying to me, oh, that is. I wish I could be able to just sleep like you. I wish I could just be able to nap like you.
That. That isn't something that, you know, you just wish that people wouldn't say things like that to me.
[00:55:46] Speaker B: Yeah, yeah. It's so annoying when people say that.
[00:55:51] Speaker C: Yes, yes. Or something like this. I don't really watch Holyokes or something that. Oh, is that the narcolepsy, you know, that they showed in the Holyokes?
It's not someone, some program someone has seen on the telly, like. Well, I haven't actually seen it. Or someone has referred me to a film where there was narcolepsy. I've Watched it. I was like, no, no. So maybe these people that are doing these shows need to just get in touch with Kelly and just, you know, naps for life. And I totally agree.
[00:56:27] Speaker A: I don't understand. It bugs me a lot. I want.
[00:56:31] Speaker C: Why don't you just do a tiny.
[00:56:32] Speaker A: Bit of research law put in place to stop them being able to misrepresent narcolepsy in the media? It's absolutely crazy. They would never do this to other illnesses like heart condition or stroke or anything like that. How dare they think that we're the butt of the joke? No, it's not hard to get in contact with a charity and say, can I. Can you. Can you introduce me? Or get on a Facebook thing and say, can you introduce me to. I'm doing a film. Can you introduce me to some of your members? Maybe I can. I can watch them for a few weeks. I can. I can shadow them. I'm sure a few of us would not mind and say, yes, that's fine, so that you can have accurate information.
[00:57:18] Speaker C: That's true. That's true. But having said that, I won't say which organization, but I've had a negative experience with the narcolepsy organization online or on Facebook, so I don't know how much luck those people might have.
[00:57:35] Speaker A: Yeah, that's true. So, yeah, I don't know. So maybe they did reach out and had a negative experience and then they thought, I'll just do my own thing.
[00:57:43] Speaker C: Yeah.
[00:57:44] Speaker B: Yeah. It's been lovely having you on our podcast, Tambi. Thank you so much for joining us.
[00:57:50] Speaker A: Yeah, thank you so much very much.
[00:57:52] Speaker C: For creating the podcast story.
[00:57:54] Speaker B: And we like to say at the end, happy napping, everyone.
[00:57:57] Speaker C: Happy napping. Yes, I think. I think that's what is going to happen as soon as I. I get onto this prayer session thing, which only has a few because finish it's for an hour, almost probably fall asleep.
[00:58:11] Speaker B: I think we'll all be napping after this.
[00:58:13] Speaker C: Yes.
Yes. Yes, indeed.
Yes. Nice chatting to you guys. And hopefully I will come back on your Friday night Zoom Kelly.
[00:58:27] Speaker A: Oh, that would be nice. We'd love to have you back.
[00:58:29] Speaker C: All right, you take care, guys. Bye. Bye. Take care.
[00:58:32] Speaker B: Bye, Tabby.
[00:58:34] Speaker A: I want to thank everyone for listening to season one of Narcolepsy Navigators. January to September. Now, I always like to refer to idiopathic hypersomnia as narcolepsy's sister. If we use this analogy, then narcolepsy also has a brother. His name is Klein Levin.
So it turns out that the focus of the podcast at the beginning was supposed to be for narcolepsy and ih I didn't realize at the time that I was forget I was missing out Another sleeping disorder that falls into the same category as narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. This sleeping disorder is called Kindlevin, so all four disorders are a part of the central disorder of hypersomnia. This is what the podcast will be focusing on. Although the podcast is named Narcolepsy Navigators, we are here to tell the stories of people who have narcolepsy type 1, narcolepsy type 2, idiopathic hypersomnia and Kline Levin. If you're out there and you have any of these disorders, please contact us so we can share your story.
Thank you for spending time here with us at Narcolepsy Navigators. 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.
Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
