Episode Transcript
[00:00:06] Speaker A: Hello. Welcome. You're listening to season one of narcolepsy navigators, brought to you by naps for life, narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerly Bwoga, the founder of Naps for life Narcolepsy, and welcome to our stories.
Hello and welcome to Narcolepsy Navigators. This is Kerala, your host, and today we're talking to Shakara Johnson. Welcome to her story. Hi, Shakara, how are you?
[00:00:47] Speaker B: Good. Hi, everyone.
[00:00:49] Speaker A: Did I say your name correctly pronounced?
[00:00:52] Speaker B: Saqqara. Sakara.
[00:00:54] Speaker A: Saqqara.
[00:00:54] Speaker B: There's no sh. It's yes.
[00:00:58] Speaker A: Saqqara.
[00:00:59] Speaker B: Yes.
[00:00:59] Speaker A: My apologies. So, Sakara, would you please introduce yourself? Tell us where you're from, what part of the world you are in, and what do you do for a living? And just a little snippet about yourself.
[00:01:14] Speaker B: Okay. My name is Sakara Johnson. I live in the United States. Well, Philadelphia. Amongst my many talents, I do audio and video for my church organization and various events that we put together.
I dabble a little bit in web design, tech support.
[00:01:39] Speaker A: Ah, that's good. What year were you diagnosed?
[00:01:43] Speaker B: I was diagnosed in the year of 2015.
But I would say that I had a battle with what's now narcolepsy for years. I was born premature at a pound and 14oz. And because of this, I also had to have a drach installed to help my, you breathing. I've always had health challenges. I was misdiagnosed a few times with a few things.
I was first diagnosed with upper airway resistance syndrome. For those of you that don't know that, according to what the doctors explained to me, if I remember correctly, it's when your brain isn't getting enough oxygen. So when I sleep, they said that my brain would be waking up 27 times every hour.
So they did a sleep study and they. That's what they found. And then a year or so afterwards, I got approved by one of his famous doctors here. I think he retired now, Doctor Rosenberg, he told my mom that I would have been a candidate for the MLSt test. So I did that. And then that's when they found out that I was narcoleptic. Like severely narcoleptic. Before that, they also thought I had sleep apnea.
[00:03:22] Speaker A: I was just about to ask you about that because you mentioned about your brain waking you up so many times in the night, not being able to get oxygen.
And so that sort of reminded me of a little bit how they explained sleep apnea. So I've. That's what I want to ask you.
[00:03:42] Speaker B: If.
[00:03:42] Speaker A: If they thought you had sleep apnea as well, or what was the main differences between sleep apnea and the respiratory one that they found that you had?
[00:03:50] Speaker B: So they thought I had sleep apnea, and I ended up using a CPAP machine.
And I know there's people out there in the sleep community that do use it, and they say it's very helpful.
But for me, personally, in my personal experience with it, I didn't find that it was helpful. I found that I would wake up many times in the night feeling like I was suffocating, you know, because you sleep with the mask on your face, and then you have the machine, it's really loud, and I could really feel, like, the air being pushed into my lungs. It was, like, a very forceful, like, push.
You know, I think they had it on, like, the highest setting. So a lot of times at night, I would just rip it off. I wake up because I would be uncomfortable. So the. So I'm not really sure if there's a difference with the sleep apnea and the upper airway resistance syndrome that I can remember.
I just remember them saying that my airway wasn't opening enough. So because I had trach. I had tracheal reconstruction at four years old, and because of this, they ended up having to take, like, a piece of my rib, make a stent, like, in my airway to help me breathe. So every so often, I would have to go into the emergency room, and they have to remove the scar tissue, and basically, so I can, you know, breathe better, and my airway was more open. My last surgery was 2018, I believe. Yeah.
[00:05:34] Speaker A: So this is something that they've had to keep redoing from UFO till 2018. This is a regular thing that they have to keep adjusting.
[00:05:44] Speaker B: Yes.
Yeah. And, you know, it is funny, because you would think by now I will be used to it. But before I get the surgery, I go to, like, the ear, nose, and throw doctors, and they do what's called scoping, where they put a huge camera up your nose to look in your airway. And it is the most uncomfortable thing you can ever, like, experience.
Like, imagine. I mean, like, I don't like anything up my nose. So you're just. The whole time, you're just feeling, like, a whole bunch of pressure.
[00:06:22] Speaker A: Yeah, I'm sure people can imagine because people were complaining about just having to do their COVID test or whatever. When they had to go up their nose?
[00:06:29] Speaker B: Yeah, I don't think anybody enjoys having anything up their nose.
[00:06:33] Speaker A: So it seems because of your trait and the history with having that, you were not sleeping well for a very long time.
[00:06:43] Speaker B: Yeah, because of my airway, I tend to snore. Growing up, you would think I was getting enough sleep, but I would always find myself falling asleep in class, and all the teachers be like, hey, look, we don't want to bother her. I mean, her grades are fine, but she's sleeping in class.
[00:06:58] Speaker A: So when did it get to a point where your parents and yourself realized that, okay, this is more than just the falling asleep in class that you have been having most of your life, and this is probably connected to the trait, and they weren't there was like, okay, so that's fine. We're used to that. That's fine. What was the point where they thought, actually, this is more than the trach. This is something else.
[00:07:22] Speaker B: The point that connected all of it, really, is, aside from getting the trach out. Moving to Philadelphia from New York. When I was four years old, I fell out the tree and hit my head on a brick. And I think the head injury caused the narcolepsy.
I've had a few head injuries. I think the one that happened when I was four years old really put the icing on the cake, so to speak.
So it wasn't until I got diagnosed with the narcolepsy. After doing the MslT, by this time, it's 2015, I'm in college, I'm working. I was studying to get my driver's license. I had a lot of stuff going on. So when we got the results and doctor was like, yeah, she's narcoleptic. My mom's face was like, oh, did.
[00:08:23] Speaker A: You know what narcolepsy was at the time when he was telling you?
[00:08:26] Speaker B: I didn't. When I got diagnosed, I didn't know anything about narcolepsy. I didn't know there were support groups out there. My initial reaction was, okay, black people don't get sleep disorders. I felt very alone in the process. It's a very big adjustment. Then the narcolepsy happened, and it's like my world just stopped because I'm like, okay, so I can't drive.
[00:08:52] Speaker A: They took away your license straight away. Oh, wow.
[00:08:54] Speaker B: Yeah, I never got my license. I had my learner's permit. But every time I went to take the test, I would always fail. And I'm like, okay, why? So after I got diagnosed, I was put on armidafinil or Nuvajil. And I was put on, like, the lowest dose. I'm falling asleep throughout the day. I just feel the same. So then I got to, like, the highest dose, which 250 milligrams. The first day I took that, I was like, oh, this is nice. I feel awake. I can do stuff.
[00:09:27] Speaker A: That must have been a nice feeling.
[00:09:29] Speaker B: Yeah, it has some side effects. I started getting these, like, tremors in my hands. Oh, no. So when I first started taking, my hands would be shaking. So I asked my sleep specialist, is this normal? She said, oh, yeah, it's fine. It's just the side effects of the medication. I'm like, I don't think this is supposed to be happening.
[00:09:45] Speaker A: So did your tremors stop?
[00:09:47] Speaker B: They stopped. I also noticed that my energy would come in waves. Some days I would be really energetic, and then other days, when I was a meds, I would be like, this supposed to keep me awake. But why do I feel like I need to take a nap? I didn't experience cataplexy right away, and this is just with the disorder itself, but a lot of times I would be at work and I would be facing out, or I would drop stuff, drop my phone, and I'm like, okay, I think I need a nap.
[00:10:18] Speaker A: So were you taking scheduled naps?
[00:10:20] Speaker B: No, I was not. And I know that that is a big thing that we have to do.
[00:10:25] Speaker A: At the time when you were working, did your employers know, and were they giving you, like, reasonable adjustments and things like that?
[00:10:34] Speaker B: Yeah. So my mom actually owned a daycare, and I worked with her and a few people in the community, and, you know, they knew. So when the kids would go down for a nap, that's when I would take my team in a nap.
[00:10:47] Speaker A: Okay.
[00:10:48] Speaker B: I think one of the main reasons why I never got into the scheduled naps thing is because I always feel like I'm gonna miss something if I take a nap. I always feel like I have to be doing something.
[00:10:59] Speaker A: So you're focused on trying to utilize your waking hours as best as possible. You don't want to use your waking hours to nap?
[00:11:07] Speaker B: Yes. So usually if I'm feeling tired, I'll get up and move around. I'll just push through the excessive days of sleepiness, and as opposed to going.
[00:11:17] Speaker A: In and having a nap, I'm learning.
[00:11:18] Speaker B: Now for eight years, I need to take naps, and, you know, I can do everything that I want to do. I gotta take it easy.
[00:11:29] Speaker A: Do you think your fear of missing out has something to do with, like, social isolation?
[00:11:37] Speaker B: I think it's like the opposite. I tend to be a introvert. I can go periods where I'm just home or I'm by myself and I'm fine.
Upon diagnosis, I guess I didn't know who to reach out to. I didn't know there were people like me that had this disorder. We're not really represented as a community.
[00:12:01] Speaker A: Like in the media, just for the listeners. Clarify Akara, she is black and I am also black. So that's what she means when she says our community. It's a conversation that we had on World Narcolepsy Day. And I also wrote an article about it that although from the research, there's nothing that shows that narcolepsy is across the board on all different people of race, all cultures and all racial backgrounds. But for some strange reason, it's not represented in the media, it's not represented on social groups, it's not represented in conferences in that way. And we're not sure why this is, but there is a lack of representation with men and also with people of colour. Don't know why this is, but this is what has happened. So we were discussing this on one ocalypsy day, and I was saying, in England, there was a time when I was beginning to wonder, like, I could count on one hand all the people of colour at the conference, and I was wondering if someone forgot to like, send out the memos to everyone. How come the other people of color didn't attend? Or were the other people of colour not diagnosed yet? And from my research when I wrote the article, it isn't that they're not diagnosed. So we can only think that they just haven't found out about the conferences, or they don't know that there's. The support is out there, or they're afraid to reach out for the support. But we want to bring more representation so that no one feels alone and no one feels that there is not someone else out there that can relate to them on every aspect, not just on your symptoms, but also based on your cultural background as well.
[00:13:55] Speaker B: I think that's why it's so important for us to form our own support groups, because we need our own space. This podcast is so important, and podcasts like it because you get to talk about different topics and you learn stuff that affects the african american community that you might not know if you are of a different race. Yes, you know that's true.
[00:14:20] Speaker A: So you mentioned earlier that when you were diagnosed, you were like, this doesn't happen to our black people. Why did you think so?
[00:14:27] Speaker B: Well, mainly because if it does happen to black people, we don't talk about it. You know, we're not. We're not really one to, like, go to therapy and talk about our feelings.
I know for me, I. I tend to keep a lot of things inside. I don't, you know, there's the. That stigma of going to therapy, of seeking out help, and, you know, it's like, well, I'm independent. I can do, you know, everything on my own. I don't need, you know, help, but you really do need a community. So when I found out I was diagnosed, I'm like, okay, well, you know, this doesn't happen to people like me because I've only seen people of other races have this. It just was a foreign concept, me getting diagnosed with a sleep disorder. You know, it's uncommon for it to happen to someone like me or someone who looks like me. Yeah. So that was my initial thinking, which.
[00:15:23] Speaker A: I think it's good that we mentioned this, because I think there might be other black people out there who might be thinking the same thing. Like, this doesn't happen to us, and it does. It happens to anyone. And so we have to normalize it. And I hope this helps. And people know that. And it's not going to have to. We're not going to have to wait until some famous person's daughter or child gets narcolepsy for there to be suddenly representation of it in the media for people of color. And then they'll all of a sudden, people will get on board and start paying attention. In that respect. Yeah, we have to normalize talking about it. But, yes, in our spaces, yes, we are taught, you know, to push through things and, you know, if you're tired, you're working too hard and things like that. And these sorts of concepts will make it harder for people to get diagnosed because you will think there's nothing wrong with you, and you just have to keep pushing through it. And you might not think to ask for help. We have to take that away. And so people should feel, if you are feeling sleepy, you know, your body, if something feels not right to you and you think, you know, this has never happened to me before. I don't feel. I'm not sleeping well at night or I'm sleeping too much in the day. And this never used to happen to me before. I used to be very energetic, very functional. It's okay to mention to your doctor that you, you're feeling unwell or you don't feel yourself and ask for a sleep study to be done and just to check if everything is okay, it's okay to help.
So how did your family take your diagnosis? Were they supportive like your siblings and your parents?
[00:17:10] Speaker B: Yes, I come from very supportive family. My mom and my dad were very supportive, my siblings as well. When I did start doing advocacy work, attending support groups with projects and the narcolepsy network and all the other ones, they were very supportive. I tossed over into my community because when I found out I had it, I was like, okay, well, should I tell everybody? I was kind of skeptical to tell everyone.
I have a very supportive family and very supportive spiritual community as well, so that is always a plus. That's good. And I'm learning when I'm pushing myself too hard to just be like, okay, you need a break.
[00:17:53] Speaker A: It's okay to miss out on a few things now and then.
[00:17:56] Speaker B: Yes.
[00:17:57] Speaker A: And so the people at church, you were saying they also were supportive as well?
[00:18:04] Speaker B: Yes, very supportive. We've done group meditations to help as well, and it's just a blessing to have the support that I do. I know everybody doesn't have that. Yeah, that's good.
[00:18:17] Speaker A: I'm glad you had a more positive experience. I used to have some people say, I remember when I was just diagnosed, things like, oh, you haven't, you know, you're not praying enough. That's why God won't heal you and things of that nature. Yeah, I remember that was very annoying. When you're much younger and you're sort of. You're just starting growing in your faith, you don't have the, like, I don't know, like the backup words or what to say back to someone when they say something like that to you. Like, now I know what I would say, but back then, I just, you know, sort of didn't know, but. And I remember that I used, because of things like people saying weird things like that to me. I used to always be praying to be cured, but then we know that narcolepsy is not. It's an incurable disease. I used to pray all the time to be cured from narcolepsy. It wasn't until I started to accept. I remember when I just. There was a season, and I just gave it all to God, and I stopped praying for being cured, and everything changed. It was just amazing. Like, it's like I was carrying, like, a bus on my shoulders, and then I stopped praying for a miracle and stopped praying to be cured. And it's like a weight just lifted off my shoulders. I just started to, like, accept the disease for what it was. And things just got easier, and doors started to open in different places that I didn't see these doors opening before. And I started to realize that, you know, not everybody is cured from their disease, not in the Bible, not in life. You know, some people do get those miracles and they're cured from cancer and things like that, but that's not everybody's story. Sometimes God can use you in your ailment to bless many people that he wouldn't be able to, or he wouldn't have had the opportunity to use you in that way if you were well.
[00:20:14] Speaker B: Right? Yeah, no, I totally agree. I remember this one meditation we did, and I remember one of the community members coming to me and telling me, like, do not be afraid of your condition, your narcolepsy. It is a blessing. And I didn't understand what she meant at the time. Because of narcolepsy and because of how I've accepted it and I'm handling it, it has become a blessing. And I know that it's not something that I can change. And that was one of the things that I was so concerned about when I first got diagnosed. I'm like, okay, well, how can I control this? How can I change it? Like, and I had to come to terms with that. Like you, I had to, like you said, I had to accept it. And at first I was like, okay, well, here we go. Like, here's another thing. This, like, here's another thing that's wrong with me. But, you know, I had to really, like, change my thinking. Oh, you can still do the things you want to do. It's just going to take some time. And if you need to take breaks, you can take breaks. But I've started to see it as a blessing, and it took that, you know, group meditation and that community member coming to me and telling me to accept it and not be afraid of, you know, the disorder. So I totally understand what you're saying.
[00:21:34] Speaker A: I like what you say. You just have to take your time. Have you ever been in a car with someone in the passenger seat or something? In a car and you're driving, and then you drive up next to another car and this person is, like, in a rush, like they're in a hurry and they're trying to beat the lights or whatever to go where they're going, and then they're driving that really fast and, like, you know, trying to overtake people. And then, like, five minutes later, you reach a red light and you turn and you see that you and the and you haven't been driving. You're in the passenger seat, but your driver is not driving extra fast or anything. And then you end up at the lights back next to the same person that you were next to before, like they were. It's so funny because they're in such a hurry and doing the most to, you know, to be everything, and then you both end up at the same destination. And I think it's almost like understanding that, like, you have your list or you have your things that you need to accomplish in life. We all get into the same destination. It's just like, some of us are getting to there faster than others or whatever. And sometimes you don't even need to rush because you ended up there the same time as everyone else. Regardless of rushing or not rushing, you still end up gonna end up at the traffic lights together. So, yeah.
[00:22:56] Speaker B: Yeah.
[00:22:59] Speaker A: Let's talk about relationships. How has narcolepsy affected your relationships, if it has at all, or dating life?
[00:23:09] Speaker B: It's funny you asked me that, because people ask me this all the time. I would say that it has. There was only, like, one relationship that is affected because all the other ones. I didn't have narcolepsy at the time. Thinking back on it, it was just, like, a lack of understanding in the relationship with, you know, what was going on. And it was a lot of, like, outside opinions on my condition and what I should do and how my partner should help or, like, how they should or shouldn't have to deal with the fact that I had this disorder that I couldn't control. And I remember my partner's friends and stuff saying, like, okay, well, why can't she stay awake? Or why. Why is she sleeping? Or, why does she talk like that? Or, you know, it was always something.
[00:24:00] Speaker A: Like, obviously, you can't control the narcolepsy, but did it make you sort of feel like you were bringing all the issues or whatever? Because they kept saying, oh, why can't you do this? And why can't you do that? So obviously, you must be the problem then.
[00:24:13] Speaker B: Yeah.
[00:24:13] Speaker A: All the stuff is on you.
[00:24:15] Speaker B: Yeah. Yeah. It definitely made me feel, you know, insecure battle with, like, low self esteem. It was always a thing of, like, oh, well, you know, you're sweet, but you're too nice.
In my head, it was like, okay, so what side of me do you want? Do you want the person that is nice, or do you want the other side? Because the other side, I could. I could be cut off. I could cut you off. You know, I could be really nasty to you?
[00:24:45] Speaker A: The mood swings, yes. Which is a part of narcolepsy that maybe we don't talk about enough, but it is there.
[00:24:52] Speaker B: I feel like the mood swings are definitely not talked about a lot because personally, in eight years now, I've had narcolepsy. I've been up and down with my emotions. I, along with, like, having major things happen. Like, major things happened prior to diagnosis. I was in school, you know, I was working. I had lost, like, a really close family member. My nana passed away, and I saw sunk into, like, a real deep depression. And at first, I didn't know what it was. Depression. I never got diagnosed for it or whatever. I just, like, I was dealing with that. I was on academic probation with school, and I just kind of lost my zest for life. You know, I thought if I buried myself in my schoolwork, then I wouldn't have to deal with the loss. I wouldn't have to cope with, like, her not being here anymore. And that's kind of always been my thing, and I probably need to find some better coping mechanisms, but I used to tend to, like, thrive under pressure. So when she passed, you know, I was trying to. I was working. You know, it just was a lot going on. I was dealing with, like, my relationship, possible breakup. Like, it was just a lot of emotions, you know, happening, like, all at once. So I kind of lost my appetite. Like, I wouldn't eat. I just wanted to sleep. I wasn't really. I wasn't really myself. You know, I was really, you know, I found that I was really low.
[00:26:24] Speaker A: Like, did you feel like, you know, Clepsy was getting worse at this point?
[00:26:28] Speaker B: Yeah, I did. Because I. Because I was trying to push through all the. Because I was trying to push my emotions and my feelings down, and I was trying to stay awake for school. And I was, you know, just trying to push through all this stuff. You know, I feel like it made the excessive daytime sleepiness worse. It heightened my cataplexy.
[00:26:50] Speaker A: Yeah, because this is where it started becoming.
[00:26:52] Speaker B: Yes.
[00:26:53] Speaker A: Your symptoms get worse when you're more stressed. If you're grieving all these types of emotion, they make the symptoms worse. Yeah, that's why it's really difficult. But.
But we have to learn how to manage our emotions well, if you don't want your symptoms to get out of control.
[00:27:15] Speaker B: That's another thing that we don't really talk about is, like, the mental. The mental health of it all and how, like. And how our symptoms and narcolepsy, like, how much of our mental health is affected.
I mean, I just, like, think about, like, the fact that I sunk into like, a really deep depression. I mean, thankfully, I didn't have, you know, any suicidal thoughts or anything like that. I wasn't eating, you know, I just wanted to sleep. I just wanted to, like, isolate myself in a box for like, it felt like a month. But I didn't, you know, like, that was my thought. Like, I just wanted to, like, just be alone for, like, just like, just until I can get past this, you know, grieving period or just, you know, just until I felt okay. Narcolepsy has a lot of components to it.
[00:28:12] Speaker A: Yes, no, definitely. If I could give something to the world when it comes to narcolepsy, I would suggest to insurance companies and in countries where we don't use insurance companies in the way that they do in the US, I would suggest that every time you diagnose someone with narcolepsy, you have to set them up, not only putting them on medication, but you need to put them with a counsellor long term, that they go to counselling alongside taking their physical medication, they have to attend counselling. I think it would be very helpful because it's a part of the diagnosis which they leave to the side and you just have to work it out for yourself. And it shouldn't be that way because it affects your mental health in a huge way. And left untapped or left without support or for a very long time will lead people, leads to people having very bad depression because they don't have an outlet or, you know, that's why I think it's so important. This is something I hope that they start doing in the future, that once they're putting people on medication and they're diagnosing them, they're also setting them up for talk therapy.
[00:29:32] Speaker B: Yeah, yeah, I mean, that's an excellent suggestion. There probably should be like a panel discussion or something with the insurance companies, you know, like an expert, you know, just. Yeah, just talk about mental health and how much having a sleepless or whatever, any type of disorder, but for the sake of this podcast, a sleep disorder is, you know, affecting like, your mental health. And in that discussion, they should talk about coping mechanisms or ways to, ways to, you know, to deal with situations like what to do when you find yourself to be in a state of depression.
[00:30:20] Speaker A: Yeah, definitely. They should be teaching you techniques because it is, people can feel very alone and very isolated in it, and it has its way. Sometimes you might be going through a season where you're still able to work and accomplish things. And then you might dip into a season. It might only last a few months for someone, another person. It might last, you know, two years or whatever, where things seem to be getting considerably worse. You're not able to work, but if you don't have support, you don't know that you can come through this.
It is something I like to tell people who are just diagnosed that narcolepsy comes in waves.
It's not just one. It doesn't stay like one thing for the whole time. So you might just be diagnosed and you might take your medication, you feel fantastic, on top of the world and you're fine. That's great. But this is not going to be your experience, monoclonal for the rest of your life. It's going to be like this for a season, and then the season is going to change.
But no one can tell you when that season is going to be or how long it's going to be before it changes. And then you're going to have a dip, and then it's going to go up again, and then you're going to have another dip. It does that sometimes it is because of, you know, circumstances, things that outward things that's happening in your life, in your family or around you, and sometimes it has nothing to do with any of that and it just does its dip and you have to deal with it. But knowing that it's going to. It's not going to stay wherever it's at at the moment, whether that's low or high, it's not going to stay there forever. It's really important to know. So when you do drop into the lows of it, you don't have to worry because it's going to move out of it. It's just. No one can tell you when. It's just, this season is not going to be forever.
It will change again because that's just how it works. It keeps changing. It has a way of keeping you on your toes.
Do you think that narcolepsy, having narcolepsy makes it harder to date? I find that it does.
[00:32:21] Speaker B: It does. Or just in general? I do think it does. Um, because a lot of times you might not want to disclose that you have a, you know, that you have a sleep disorder. And then there's also the social aspect of it. It's like, okay, well, if you do meet someone, you know, you have to tell them that you have narcolepsy, and then it's like you're out, and then it's kind of like this social anxiety thing of like, oh, my God, what if I'm out on a date and have a cataplectic episode or I'm dropping stuff or kind of, like, embarrassment and something? I think. I think it can be very isolating. It can be very difficult to date. Because I was saying there was a lot of, like, misconceptions about dating with narcolepsy.
And, you know, a lot of people think, oh, you know, you just fall asleep all the time, or you just like, do you just fall asleep randomly? Like, I remember that was one of the main questions I got from, you know, this partner's friends. Like, oh, so do you just randomly fall asleep? I'm like, no, it's much deeper than that. Like, the issue is not falling asleep. The issue is staying asleep and, you know, managing the day to day.
[00:33:54] Speaker A: I would encourage people who do not have narcolepsy. If you meet someone who has narcolepsy, don't be afraid to date them. Just listen to them. What you should ask them is, how does narcolepsy affect you and what can I do to help if.
If you anything, and then listen to what they say, what ways you can help, if even if they need help, they might not need your help. But if they do, listen to them and be aware that things can't be sort of. Things might need to change very dramatically or drastically sometimes. And also things might need to be on schedule. I know these two things are contradicting each other, but this does help in that they might need to know about. They might need to put something in their diary ahead of time. And the reason they need to do this is because the person needs to plan. Maybe they need to plan to have a nap before they go out and meet you. So they can't spontaneously just go on a date any time or any day you want, because they might need to plan to make sure that they're napping and everything that's important.
And then the opposite of that would be they booked the date with you and then they had a catoplexy attack, or they had a sleep attack, and then they had to cancel the date. It wasn't because they cancelled the date because they didn't want to see you or they were being rude.
[00:35:33] Speaker B: They.
[00:35:34] Speaker A: Any of those things.
Do you think, like, things like, that would help people to know, like, things can change? Like, suddenly, you know, they might have to cancel, not because they don't want to see you, but they could have had a capex attack. Now, it might not be safe for them to travel to take public transport to go out and meet you or, you know, they might have a sleep attack and they might have to cancel and, or you're texting and then they fall asleep and then they didn't text you back and then they just went to bed the next day. You're saying, oh, oh, she didn't even. Or, you know, this person couldn't even bother to text me back. But it wasn't that, but because they fell asleep. This is the reason why I tend to try to disclose early, because I find that if I don't disclose early and I try to keep the secret to myself, this is what happens to me. I fall asleep on people, I do this and then they think that I'm ignoring them and stuff like that. And I wasn't ignoring them, it's just that I fell asleep then. I didn't remember that I was texting them before. So, you know, that time has passed. We reached the next day. I totally forgot that that even happened. And people start to think that you're being rude and you're not being rude.
[00:36:50] Speaker B: Yeah, no, that is something I am famous for. My bad texting or falling asleep mid text, I falling asleep mid text, falling asleep, washing dishes. I falling asleep eating. If I'm really exhausted, like those tips will be definitely be helpful for someone in the dating world. I mean, you know, I think people probably should just come out with a little pamphlet and say, I have this and this is how you can help me and.
[00:37:27] Speaker A: Yeah, no, no, that is a really good idea. That is a good idea. We should probably make one and put it out there because I think that's a really good idea. People should just put on the forums. What are the dating tips you would want to put in a pamphlet for non narcoleptics who want to date people with narcolepsy. This is what they should know. These are the tips.
[00:37:50] Speaker B: Yeah.
[00:37:51] Speaker A: Don't want to travel far away because if you travel an hour to meet somebody in the city or in a different location to where you live and you have to travel 1 hour to meet them, then you can only talk to them for 1 hour. Because after 45 minutes of having this conversation or going to the museum or to dinner or to, for a coffee or whatever, you're going to start to feel sleepy. And in your head as you're enjoying this conversation, what you are thinking about is, oh, what? This travel back home. The hour it's going to take me to travel back home. I'm going to be very sleepy on this travel back home. It's hard to enjoy the date when you know, you know that this needs to wrap up real quick because I've got to go home, and this is going to be like, you know. Yeah, that's gonna be a journey going back home.
[00:38:41] Speaker B: I haven't had the experience of falling asleep on a date, but I can imagine it could be very embarrassing, like.
Like, not just for you, but for the people around you. Like, if you're at a restaurant and there's people looking and you're sleeping, and then they're like, they know that they're.
[00:39:04] Speaker A: Sleeping on the date.
[00:39:06] Speaker B: Like, oh, my God.
Yeah. It's just like the scenarios. Yeah.
[00:39:17] Speaker A: If there was a red button and you could press this red button, and then you would no longer have narcolepsy, would you press it?
[00:39:26] Speaker B: No.
[00:39:28] Speaker A: Why?
[00:39:28] Speaker B: No, I don't. I don't think I would it because I feel like narcolepsy is now a part of me. I've accepted that it's a part of me, and it has opened doors for me and has led me to a better understanding of myself, and it has, you know, gave me the opportunity to learn how to take better care of myself, to monitor my sleep, make sure I'm eating healthy. So, no, I would not push the red button, even though if I was in a situation, I was tempted to, I don't think I would.
[00:40:11] Speaker A: So narcolepsy has benefited you now and has taught you how to take better care of yourself. I like that.
[00:40:18] Speaker B: Yes.
[00:40:20] Speaker A: Yeah, that's really cool. So is there anything about narcolepsy that you would like the listeners to know that we haven't talked about or that you'd like to share?
[00:40:31] Speaker B: Okay, so for the new.
I would like to share. For the newly diagnosed, people know that it is a beautiful journey not to be afraid to reach out to people. And for the non narcolepsic people, it is a very fascinating disorder. Do your research, learn about it, talk to somebody who has it.
You might gain a friend, you might gain travel buddies. It's just, you know, ups and downs. You know, I'm looking at it as a very positive sleep disorder, as opposed to, like, all the negative things that, you know, we might see out there and, like, all the negative. I'm trying to think, of course. Of course. Now I can't. Having a brain fog. I can't think of anything negative.
[00:41:25] Speaker A: For those of you who are listening, a brain fog is, um. Is one of this one of the symptoms of narcolepsy? And it's when your brain sort of goes blank. And you forget. You forget what you were saying or what you were thinking. And this happens to us quite a lot.
[00:41:42] Speaker B: Yes.
Yes. You can also experience what we like to call automatic behavior or on forget what the medical term word is. But that's when you would experience something like micro sleep. You're sleeping.
You are unaware that you're sleeping, but you're still doing what you were doing. Like, let's say you were writing a paper or taking notes, and you fall asleep, but you're still taking notes. So on one side of your paper, your handwriting might be neat, and then the other side, when you fall asleep and you're writing, it's, like, scribbled. And this usually lasts a few minutes or a few seconds. For me personally, it's lasted. I want to say the longest has been two minutes. The automatic behavior has lasted two minutes. The brain fog is constant.
It's constant.
[00:42:50] Speaker A: I like that. The honesty. Yeah. The brain fog has happened all the time. All the time.
[00:42:55] Speaker B: Yes.
[00:42:56] Speaker A: It's so frustrating. You know, when it happens, they talk in a mid sentence. You just, like, completely blank. And it's just like, where did all the information go? It was just right there.
[00:43:07] Speaker B: Yes. Like, I mean, I could just think about countless conversations I've had with friends, and we could be in the middle of a real deep conversation, and then the brain fog happens, and they'd be like, okay, what was I saying? What were we talking about?
And then you have to, like, you know, retrace your steps, and then you're just like, okay. It's like, I don't want to talk about this anymore because I don't remember when we left off.
[00:43:33] Speaker A: And that's all. Thank you for, of course, coming on the podcast. Thank you for sharing a bit of your story with us. We appreciate you, and we appreciate it, and we wish you all the best in your future with your work and your family and your life.
[00:43:52] Speaker B: Thank you so much. Okay. For listeners that don't know, this is my very first time actually on a podcast. This was fun. You know, I could definitely see myself doing this more often.
One of the main concerns I was, like, stressing about earlier this week was, like, my voice on the microphone. It's like, okay, I know how I sound regularly, and then it's like, when I'm on the microphone, it's, like, amplified. I have to accept, like, you can't control it. But, yes, this was fun. Thank you.
[00:44:25] Speaker A: No, you're welcome. We enjoyed having you also. We enjoyed having you also. I think everyone's, um, a bit nervous about hearing their own voice like played back and stuff. But we don't tend to listen to our own voices on a daily basis, so I think it takes a while to get used to hearing your own voice. All right, well everyone, have a good day and bye bye everyone. Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
Thank you for spending time here with us at narcolepsy navigators. I hope you learnt 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.
