Episode Transcript
[00:00:12] Speaker A: Hello.
[00:00:12] Speaker B: Welcome. You're listening to seasons one of narcolepsy navigators, brought to you by naps for life narcolepsy. Narcolepsy Navigators is a podcast for raising aware of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerley Boga, the founder of Naps for Life Narcolepsy, and welcome to our stories.
Today we are going to talk to Liz from the UK, and the topic is travel. We will discuss the good, the bad, and everything in between.
Hello. So welcome, Liz.
[00:00:56] Speaker A: Thank you.
[00:00:57] Speaker B: How are you?
[00:00:57] Speaker A: I'm doing good. How are you?
[00:00:59] Speaker B: Yeah, I'm okay.
So please tell us, introduce yourself and also tell us, when were you diagnosed? How long did it take for you to get diagnosed?
[00:01:12] Speaker A: Okay, so I'm Liz, I'm 28 and I'm from Bristol, but living in London at the moment. And I was diagnosed when I was 18 years old. After four years of experiencing symptoms, I was actually diagnosed the week before I went to uni. So that was interesting.
And, yeah, given medication literally that week, and off I went to Manchester University. Yeah. So that was very interesting experience.
[00:01:40] Speaker B: Okay, what do you do for a living?
[00:01:42] Speaker A: So I work as a speech and language therapist, and I work with young people who have communication needs in schools at the moment and moving into the stammering world soon.
[00:01:54] Speaker B: Cool. And how do you find your narcolepsy affects you at work?
[00:01:59] Speaker A: Oh, that's a good question. Well, so, first of all, I take two medications to keep me awake. I take sodium oxybate at night to help me sleep, and then I've just started wakex, or pitolescent, if that's how you say it, in the day. And so that helps me get through the majority of the day. But I also have to have a nap at lunchtime. Yeah. So I've got a yoga mat that I sleep on in a small office at lunchtime just for like, 2030 minutes, and usually that gets me through the rest of the day.
[00:02:28] Speaker B: Oh, that's good.
[00:02:29] Speaker A: Yeah. Then sometimes I might have a little nap after dinner as well. That's good.
[00:02:34] Speaker B: So, Liz, let's talk about travel.
Have you been traveling lately?
[00:02:39] Speaker A: I have. So I recently took a career break. I went away for. So I had a five month career break and I traveled for three months. Yeah. Which was really, really cool. But there were some obstacles along the way with going on the travels, particularly because I take sodium oxidate, which is a control drug. So it was actually really tricky trying to work out which countries I could take that in for longer periods because I didn't know this when I started the medication. A lot of countries only let you take in a small amount of controlled drugs, so either sort of seven days worth, two weeks worth, or up to a month at the maximum, which is so tricky when you want to travel for sort of three months. Backpacking.
[00:03:23] Speaker B: Backpacking. I see. Yes, because they don't want you to think that you could be selling.
If you take three months of controlled drugs. That's a druggie right there.
[00:03:35] Speaker A: Going to end up in prison somewhere, which is not my plan.
So, yeah, I've actually just written a little article for narcolepsy UK about my experiences of it, because I just wanted to let other people know how tricky it was to actually plan when I really had no idea about that at all.
[00:03:52] Speaker B: So did it mean that some of the countries on your list you couldn't go to.
[00:03:56] Speaker A: Yeah, so I couldn't go to Thailand because in the guidance online, it said you can't take GHBN in any form. And I could not get a clear answer from anyone like doctors or online whether GHB was exactly the same as sodium oxybate and whether that would count or not. So, yeah, I couldn't go there, which was a shame.
[00:04:17] Speaker B: So you couldn't take it into Thailand at all?
[00:04:20] Speaker A: That's what it says. I mean, it doesn't say sodium oxybate, it says GHB, which obviously is an illegal drug. But when I checked with a pharmacist, they said it's the same chemical compound.
[00:04:30] Speaker B: Yes.
[00:04:30] Speaker A: And so I didn't know whether it would count.
[00:04:33] Speaker B: This is very disappointing to me because Thailand's on my list of places to visit.
[00:04:37] Speaker A: Yeah, I know. It was crushing. Yeah.
But, I mean, I have a feeling that if you turned up with sodium oxybate, they would see it as a different medication. Like, they wouldn't see it as GHB necessarily, because it doesn't say GHB on the label. Right. But I didn't want to risk know.
[00:04:55] Speaker B: Yeah, because after you paid your ticket and everything, imagine you turn up and then they confiscate the stuff.
[00:05:00] Speaker A: Yeah, exactly. And the worst thing is that I actually booked all my flights to Southeast Asia and the different countries. And then after I booked my flights, I found out about the medication. Oh, no, not the best. So I had to do some rearranging. But in the end, after a lot of googling and actually going to the embassies of different countries.
[00:05:23] Speaker B: Oh, my God.
[00:05:24] Speaker A: Well, in the UK in London, which wasn't very helpful. They would just say, actually, for Vietnam, they just said in the embassy, they were like, oh, well, just try and take the medication in, in the doses that you need, the higher quantities you need, and see if they let you in at the border.
I was like, great, thanks for that. That's really reassuring.
[00:05:47] Speaker B: Wow.
And then if they say no, you can't come in without it, then they take away the drugs.
[00:05:53] Speaker A: Exactly.
[00:05:54] Speaker B: Then how do you survive the rest of the trip? Exactly. Sleeping all the time in a country by yourself? Did you travel alone?
[00:06:02] Speaker A: Yeah, so I did a bit of traveling by myself, but also group tours.
[00:06:06] Speaker B: Okay.
[00:06:06] Speaker A: Yeah. And my partner came out as well for some of.
[00:06:08] Speaker B: Oh, that's nice.
[00:06:10] Speaker A: Yeah.
[00:06:11] Speaker B: So did you use any special assistance when you were traveling?
[00:06:15] Speaker A: Oh, I didn't, but I wish I did because I actually did have a complicated situation in one of the airports. It was when I was coming back from Vietnam, and I think it was Vietnam, I wanted to skip the queue for check in because I was so tired. I was like, you know what? I just want to get through this queue that's taking forever. And I showed them my medical letter to say, I have narcolepsy and said, can I skip the queue? I've got this medical condition. And they were like, okay, I'll look at your letter and let you know. They took about 20 minutes reading this letter, and I was like, why is it taking so long? And they looked really concerned. So I went up to them and said, what's the hold up?
And they were, you know, we've had a look at your letter. I think they were Google translating it.
And so it's never great, is it, with medical stuff? And I think they then Google translated cataplexy and it come up with, like, paralysis because they were then saying to me, we don't know if you're even safe to get on the flight because you have this condition and it causes this effect. And I was trying to explain to them, like, no, it's perfectly safe for me to get on the flight.
[00:07:28] Speaker B: How did I get here in the first place?
[00:07:30] Speaker A: Exactly. I've been traveling by myself. I can have a job and all of this, but obviously there was a language barrier there. And in the end, actually, because I was so tired, I just started crying and was like, please, can I have my letter back? I was like, I'll just wait in the queue. It's fine.
And then they were like, you know what? It's fine. Just skip the queue. Just go through.
But, yeah, I've also had some good moments, not just stressful.
[00:07:56] Speaker B: That's why I always encourage people to take special assistance when I travel. I always take the special assistance because you never miss your flight, because they have to take care of you. You go in, you check in special assistance, they put you in a wheelchair, they will.
[00:08:13] Speaker A: Oh, really? That sounds great.
[00:08:15] Speaker B: They wheel you up, you can fall asleep.
[00:08:17] Speaker A: Nice.
[00:08:18] Speaker B: They wheel you up, they leave you, they come back, someone else wheels you into the plane, they help you with your bags up the stairs.
[00:08:26] Speaker A: That does sound good.
[00:08:27] Speaker B: Sit down and it doesn't matter whether you fall asleep. You can't miss your flight when you come off the plane. I remember traveling without special assistance. Being in a big airport like JFK, just the walk from JFK, if you were healthy, fit, adult, is tiring. When your cataplexes start kicking in and you start looking like you're drunk, there's one type of people that they don't have sympathy for in the airport, and that's drunk people. So no one's going to be sympathizing with you. If you start looking a bit drunk or looking a bit od, they're not going to think, oh, this person's unwell. They're going to be like, why have you been drinking so early? You're not supposed to drink before you get on a flight. This type of thing.
[00:09:05] Speaker A: Classic drunk british person. Abroad.
[00:09:08] Speaker B: Abroad, yeah. They're not going to have sympathy for you. And so I find using special assistance, it's a free service. You don't ever have to worry about missing your flight. This is their responsibility to make sure that you get on the flight and you don't miss it. And they carry your luggage as well, which is wonderful.
[00:09:24] Speaker A: Maybe I should do that. I feel like, as someone with a health condition, I often have this annoying pride where I feel like I can't accept help because I have to prove that I can do it, which actually is just detrimental to myself a lot of the time.
[00:09:38] Speaker B: Yeah.
[00:09:39] Speaker A: So I really need to be more open to actually accepting help and being open about my condition with not just the really close people in my life.
[00:09:49] Speaker B: Yeah, that's a work in progress. I think when you do have an illness and it takes away some of your, I would say, rights, but it's like autonomy. Independence. Yes, it takes away your independence. It means that you feel, like, cheated. And so I think it gives you almost like an extra zeal to feel that you need to be prideful or you need to do things on your own or whatever. Almost like to prove to yourself that you can do it. And so then it is more difficult to ask for help because you're always like, in your mind, I can do it, I can do it, definitely. I think that can be very helpful in some areas, but then I think in other areas, you might be surprised that a little bit of help can go a long way. And I think in traveling, it really helps because then when you get to your destination, you're not as exhausted and stuff. Because I find usually when you travel, this happens to people, I think, even who do not have narcolepsy. Traveling is something that does take a lot of energy. And when you get to the next destination, it might take a day or so to recover. You might be jet lagged or things like that, and your body acclimatized into the new environment. I think if you add that to being absolutely exhausted all the time and then not having had any help to travel there, then you're just so like, oh, my gosh, you just want to sleep for two days to recover. But at least if you get some help part of the way, when you get there, you're not so completely beat.
[00:11:29] Speaker A: Yeah, it's a good idea. I'll definitely look into that next time. And you're right. And the thing with holidays is, obviously, if you travel further abroad, when you get there, you're so tired that the first couple of days are just recovering anyway, which was why it was quite nice to have a longer term trip because I could fully acclimatize.
[00:11:47] Speaker B: And then you didn't feel like your holiday was wasted. Yeah. Not saying that people feel that their holiday is wasted, but you've got more time. Yes. As someone with narcolepsy, if you're traveling somewhere, say you went for ten days, and if you took two days to climatize, you've already missed two days of your holiday. But if you were going for a longer period of time, that really helps. And you don't feel like you've missed out.
[00:12:08] Speaker A: Yeah, definitely. And, yeah, so it was a really amazing experience, actually. And I'm so glad I did it because I had no idea how it would work for someone like me who has narcolepsy. But actually, the first thing I did was so I joined a group tour in Vietnam and Cambodia. It was for 18 to 30 year olds. It was weird because I was actually one of the oldest, which I wasn't expecting, but it was a really good group of people, and it was nice how it was all set up because you are traveling around quite a lot by bus. So there was loads of opportunities to nap. And I wasn't the only one napping, which was so nice. Everyone was falling asleep all the time and actually a lot of people in the group were really chilled and they would just take time out to rest. And that made me feel more confident in doing that myself instead of feeling like I had to push myself all the time to see everything, which actually isn't helpful because then you burn out.
[00:13:04] Speaker B: And you don't want to enjoy.
[00:13:05] Speaker A: Yeah, exactly.
That was nice. And I could really take it at my own pace. There were a few early morning starts, though.
[00:13:13] Speaker B: That would have been difficult.
[00:13:14] Speaker A: Yeah. Around sort of like 05:00 a.m. How.
[00:13:17] Speaker B: Did you manage that with the sodium oxybate? Did that mean you had to take one dose instead of two?
[00:13:25] Speaker A: No, I think there was one time, actually, we had to get up at 04:00 a.m. To go and see temples before it got really busy. And I actually just went to bed so early. I think I went to bed at like 08:00 p.m. So I could get about six, 7 hours sleep.
[00:13:41] Speaker B: Okay.
[00:13:41] Speaker A: And that meant that when I woke up, I did feel groggy, but it wasn't in an unsafe way.
[00:13:47] Speaker B: Okay.
[00:13:47] Speaker A: Yeah. I could still get up and move around and have conversation, but then it did mean I was exhausted by about 04:00 p.m.
But that was fine. I could just go back to the hotel and chill out.
[00:13:59] Speaker B: Yeah, but you didn't get to miss the temple. That's good.
[00:14:02] Speaker A: Yeah. And I think the nice thing about a tour as well is you can opt in and out of activities.
[00:14:08] Speaker B: Okay.
[00:14:08] Speaker A: So if there are things that you don't want to do or you feel too tired to do, you can just say, actually, I'm going to chill back at the hotel or just have some alone time and I'll see you guys later.
[00:14:19] Speaker B: Okay, well, that's really helpful. Yeah, that's good. So where else did you go apart from Vietnam?
[00:14:25] Speaker A: So, yeah, the tours, Vietnam and Cambodia. And then I went to Indonesia for a month.
[00:14:30] Speaker B: Oh, wow.
[00:14:31] Speaker A: My partner came along with me for that one, which was really nice.
[00:14:36] Speaker B: Oh, that sounds nice. And any trouble there with the medication or anything?
[00:14:41] Speaker A: No. So Indonesia and Japan, which are the last two places I went to, they let you take in as much as you need for your.
[00:14:49] Speaker B: Oh, that's really nice.
[00:14:51] Speaker A: But for your whole trip. So not just where you are in that how long you are in that country, but also for the places you're going to.
[00:14:58] Speaker B: Oh, wow.
[00:14:59] Speaker A: Yeah.
[00:14:59] Speaker B: Oh, so those are good places. So anyone who has narcolepsy, Indonesia and Japan, those are the places to visit. Yeah.
[00:15:07] Speaker A: And obviously Japan is known to be a very efficient and organized country.
So I just had to fill in a form online, and I think they got back to me within a couple of days to say, like, yeah, we've approved your medication. You just need to print this form, bring it along with you. So that all went pretty smoothly, which was great.
[00:15:26] Speaker B: Oh, that's good.
[00:15:28] Speaker A: Yeah, really nice. And when I was Indonesia, so I was traveling with my partner, which was really nice to have someone to sit with me while I nap in different places.
[00:15:38] Speaker B: Yeah. So you don't look od. Yeah. Because that's always been my thing when I was traveling. You're always sort of, like, conscious of your bags and your luggage and everything like that. I remember when I was in San Francisco airport. Anyone listening? It has a very good library. Has amazing sleeping spots all over the library, undisturbed, really big chairs. You can put one chair for your feet, one chair for your body.
Very comfortable.
[00:16:07] Speaker A: Amazing. Yeah, that sounds good.
[00:16:11] Speaker B: Yeah.
[00:16:11] Speaker A: I think that's the tricky thing about going away. Traveling by yourself is working out the nap situation.
That's definitely something that I was really apprehensive about. Do you have any tips on how you manage that when you're out and about?
[00:16:26] Speaker B: I always sort of looking for a place that's really safe, like in the airport. I find what's good is that other people are tired as well. So I look for places where other people are also napping. So that seems more safe because everyone's sort of sleeping in this sort of area. So the likelihood that someone would go over and disturb a whole group of people sleeping seems less than if you were just, like, on your own. So try to sleep close to groups of a group nap. Yes, a group of people, and otherwise a closed space that seems quite safe. Like, for instance, when I found the library, like a place, like.
[00:17:09] Speaker A: So when I was in Indonesia, obviously, it's hot weather over there most of.
[00:17:15] Speaker B: The time, so that makes narcal worse.
[00:17:17] Speaker A: It does, but it made it easier to find places to nap because I could just go to a park or I could nap on the beach.
[00:17:26] Speaker B: Oh, yeah.
[00:17:27] Speaker A: Whereas I find it really tricky in cold. Know, like, uk in the winter.
[00:17:32] Speaker B: Yes.
[00:17:33] Speaker A: Because if you go out for a whole day, where do you nap?
[00:17:36] Speaker B: That's so true. Yeah. It does work in the summer because you can go to the park and lie down and everyone thinks you're sunbathing. They can have in a great snooze.
Exactly.
[00:17:45] Speaker A: Put your sunglasses.
[00:17:46] Speaker B: Yeah, exactly.
Yeah, that's true. It is difficult in the winter. There isn't safe places to nap.
Yeah, there isn't safe places to nap.
[00:17:57] Speaker A: And I don't love napping in public. It's something that I used to be really open with it and fine about it, and as I've gotten older, I've actually become more awkward about napping in public.
[00:18:09] Speaker B: Maybe it's the vulnerability.
[00:18:11] Speaker A: Yeah, I think it is. It's definitely something I'm more aware of. And being in know, you don't want to be necessarily like napping in a Starbucks with your bag next to know, because you don't know what will happen. But, yeah, it was great when I was away because I did feel safe in most places, and it was warm, so it was so easy to just find parks to nap in, even in Japan as well. And obviously they have the bullet trains there, so that was great.
[00:18:38] Speaker B: What's the bullet train?
[00:18:39] Speaker A: It's a super fast train that goes across the country.
Yeah, it's amazing to be on. I don't know how fast it goes. It might be something like 200 miles an hour.
[00:18:50] Speaker B: Wow.
[00:18:50] Speaker A: Yeah, it's amazing. And we went on that a fair few times, and that was a great place to have a nap because the chairs are so comfy as well.
Oh.
[00:19:06] Speaker B: It was.
[00:19:06] Speaker A: It was a luxurious nap, for sure.
[00:19:10] Speaker B: Yeah, that's really good. Did you find in Japan that. Did you see a lot of people that were sleeping in Japan?
[00:19:17] Speaker A: I actually was looking out for this because I've heard that in Japan there is a high percentage of people with narcolepsy.
[00:19:23] Speaker B: Yeah.
[00:19:24] Speaker A: I can't remember where or when I heard that fact.
[00:19:27] Speaker B: Yeah. Is it? Yeah.
[00:19:29] Speaker A: Okay. I definitely saw people sleeping on trains a fair amount.
But you see that anywhere? Pretty much, but there were. Yeah, I definitely saw a lot of heads know, falling asleep in various places, mainly public transport.
[00:19:44] Speaker B: I've talked to one of a lady that lives in Japan that has narcolepsy, and she was saying that that's why it was really difficult to get diagnosed because so many people are sleeping there because they work so hard.
If you say to someone you're tired, they say to you, yeah, good. And you say, why? Is it because you're meant to be tired? You're tired because you're working hard to be successful. That is why you're tired. So if you're not tired, you're not working hard enough, so you don't really want to be successful. So if you're tired and you're sleeping. That's a good sign because it means that you're working so hard at your job, you're going to be so successful. This is why you're sleeping.
[00:20:26] Speaker A: Wow. That's a very different way of looking at.
[00:20:30] Speaker B: Yeah, yeah.
[00:20:31] Speaker A: And I can see why that would make it really difficult to get a diagnosis. And it's already hard to get a diagnosis in the UK, where the culture is not necessarily like, grind culture to that.
Yeah, yeah. That's tricky. But it was so interesting in Japan. Just culturally know, the language is so different and it feels like a whole world away from the UK.
It's just like totally different. But that was great. I love being immersed in the culture and traveling around. I did a group tour there as well, actually, which was a bit more full on, and that was quite tiring. But as I said earlier, I did skip quite a few of the activities because I was like, you know what? I'm going to enjoy it more if I feel rested.
[00:21:15] Speaker B: Yes.
[00:21:16] Speaker A: And that's more important to me than seeing another temple. Even though the temples were beautiful, we did see a lot of them.
[00:21:22] Speaker B: Yeah. You have narcolepsy type one or type two.
[00:21:25] Speaker A: So I have narcolepsy type one.
[00:21:27] Speaker B: Okay, so then you have cataplexy. So, yeah, if you pushed yourself so, so far and then you triggered this cataplexy attack and stuff, then that would have helped take away from your experience. And then even when looking back, maybe you're looking back at the photos and stuff, but you might not even collectively remember if you really enjoyed that day. Or those hours might be like a blur rather than if you took the rest and then you really enjoyed the next activity because you were fully alert to enjoy it.
[00:22:01] Speaker A: I think I'm quite lucky because my cataplexy isn't very severe.
[00:22:06] Speaker B: Okay.
[00:22:07] Speaker A: It's pretty mild, especially with the medications that I'm on. So I only get minor kind of. My knees go a bit weak or, like, my head drops a bit if I'm really, really tired. But it probably happens less than, like once a week. Something I did find quite hard when I was traveling is so a friend came with me on the group tour, and she's really patient with me and understands as much as a kind of able bodied person can understand with the health condition. But there were times when she just had so much more energy than me and could go and do all these things. And it was hard sometimes to see that and to be the person that has to take that step back.
[00:22:49] Speaker B: Yes, I can imagine.
[00:22:52] Speaker A: But it was definitely still worth going. And I'm so glad I did it.
I also had two weeks traveling by myself, which is something I was so proud of.
[00:23:01] Speaker B: Well done.
[00:23:02] Speaker A: Thank you. Yeah, as I said, I didn't know whether I'd be able to do that and I've never done that before, so.
[00:23:10] Speaker B: It'S a great accomplishment.
[00:23:11] Speaker A: Yeah. I was very, very chuffed with myself that I did that. I was in Indonesia for most of those two weeks and then a few days in Japan by myself. It was actually so much easier than I thought because I could completely create my own schedule.
[00:23:26] Speaker B: Yes.
[00:23:27] Speaker A: So some people would get up super early in the hostel and go out for the whole day and I was like, you know what? I'd love to do that, but that's not how it's going to work for me. So I just tended to go out maybe a couple of hours in the morning, go back to the hostel for lunch, have a good nap, then maybe do something sort of later in the afternoon, going into the evening, like go out for dinner and then obviously have a nice early night. And, yeah, it was really good. And I tried to be quite open with the people around me about having narcolepsy because sometimes people would invite me out and they'd say, like, oh, do you want to come out for a day trip and do this? And I'd have to explain, like, I do want to come, but actually, because I have to nap in the middle of the day, this is how it would look for me. So maybe I could go and find a park to nap in and meet you later or just join for half the day, for example.
[00:24:18] Speaker B: And they were receptive?
[00:24:21] Speaker A: Yeah. For the most part, people, I think they didn't really understand it, but they were open to it. And they would sometimes ask questions, which I find helpful when people are like, oh, I don't know about that. Can you tell me more instead of.
[00:24:34] Speaker B: Making assumptions or pretending like they know?
[00:24:38] Speaker A: Yeah. There was only one instance that I didn't really like where I went out for dinner with everyone and I'd literally just told one of the people there that I had narcolepsy because I'd spent the day with them. And when we were at the dinner, they were like, oh, are you falling asleep? And I don't know if they said it as a joke or out of genuine concern, but I was like, no, I wasn't falling asleep. Maybe I was looking a bit tired after the meal. I always get a bit of a food coma afterwards and I didn't really appreciate that comment, but I don't think it came from a bad place.
[00:25:11] Speaker B: Yeah, I don't like that comment either. Yeah.
Are you looking sleepy? No, I'm fine.
[00:25:17] Speaker A: Yeah, I am sleepy. Because you're boring me. Not because of the narcolepsy, but, yeah, I think it's funny, isn't it, when you tell people about narcolepsy, how different people react? And I have found just generally in life, and maybe sometimes when I was traveling, people don't really know what to say. And then sometimes they make annoying comments like, oh, wow, I wish I could nap every day.
[00:25:42] Speaker B: Yes, I hate that one as well.
[00:25:44] Speaker A: Yeah. Do you get that sometimes?
[00:25:46] Speaker B: Yes. If only I could sleep all the time now. It doesn't work that way.
[00:25:52] Speaker A: Yeah, it's very frustrating. And you want to bite that person's head off and literally say, like, well, I have to take a lot of medication just so I can stay awake and not fall asleep all the time.
[00:26:06] Speaker B: Yeah. And I'm not sleeping at night. I'm hardly sleeping at night. And I'm having insomnia, and I'm having vivid dreams, and I'm having paralysis. No, it's not a walk in the park.
[00:26:17] Speaker A: 100%. And I think this is something I've had to say to my friends as well, because most of them. Well, yeah, all of my friends know that I have narcolepsy. It's something I am quite open with, with that group. And then, particularly when I was younger, sometimes people would make jokes about it. And I don't mind if people make a joke about it if I think they fully understand what it's like to go through it, if they have the best possible understanding that they can have as an able bodied person. But I don't like people making jokes when I don't think they get it, because then it just feels like you're really undermining or minimizing my experience of this hard condition.
So I had to have a few words with friends over the years. One that used to really get me at uni was when people would say, like, oh, you should come out. And if I said like, no, I'm tired. I can't come out right now, they'd be like, oh, you're so boring. And that used to wind me up so much and be like, do you know how hard I tried just to get through day to day life?
[00:27:20] Speaker B: Of course I want to be social. Who doesn't want to be social? Who doesn't want to go out and hang out and have a laugh or have a drink? Or whatever. No, that's not true. How does that make me boring?
[00:27:32] Speaker A: It's difficult as well, because naturally I'm an extrovert. But I'm an extrovert with narcolepsy. So it's like a different picture. I have to have social time for my own well being. But then I have to withdraw and have alone time. And it's not because I want it. It's just because I have to let my brain decompress and I have to sleep and relax so I can recharge my batteries more often.
[00:27:58] Speaker B: That's a really good way of putting it.
I so relate to that because I'm also an extrovert. I wrote an article on this for health union earlier this year. Turning from a social butterfly to a hermit. Because as you're saying, your body needs the social interaction. Because that's how you survive as an.
[00:28:24] Speaker A: Extrovert and enjoy life.
[00:28:26] Speaker B: Yeah. But then your physical body doesn't want it and needs the rest in order to survive. So you're fighting like this. And I think I found since COVID becoming more and more into the hermit than the social butterfly situation, it's very scary because don't want to be in this hermit situation, but just not having the energy to survive the social situations.
[00:28:54] Speaker A: Yeah, yeah, I totally get that. And I think Covid had a similar effect on me. Just the pandemic in general, because I think before that I would really push myself to be as social as possible. And actually, probably to my detriment, I would work as much as I could. I would go out or have plans most evenings and all weekends. And I really don't know how I did that. Because in a way, for me, I mean, the pandemic and being at home all the time, it did lower my threshold of what I could manage, which isn't ideal, but I felt like it also gave me permission to not do as much. And I did find that helpful. And actually, now that things are kind of relatively back to normal, I have been doing less day to day and been prioritizing staying at home in the evenings and just like trying to make myself a nice meal and having days to myself on the weekend. So even though my threshold for the energy levels is lower, I think it has been nice to accept that as well and give myself that time.
[00:30:01] Speaker B: Yeah. That permission to say, that's okay, you don't have to go to everything. Yeah, definitely. I just find it's sort of difficult with keeping friendships. I don't know if you have this when you always having to say no to stuff. Then after a while, people don't seem to want to invite you to stuff anymore. For me, it was like with church, and then all the people that I was really close to when I joined this church, they were all from abroad, so they came here to work and stuff for a couple of years. And so they've all gone back to New Zealand, Australia, to Spain, to South America. And so now I'm left with all the people that are left here, and they don't seem to understand it, like, how the other people understood it. And I'm just, like, fed up of having to explain things to them. And I'm just like. I just feel if this was the other group, they would have come to my house and got me.
If I didn't make it to church in the afternoon, they would have been like, let's go for a walk. And we would have gone out for a walk or something.
More effort would have been made. But it was like, no one really bothers. Maybe a few people may call me and check on me in the week, whatever. And then if I turn up to church, they haven't seen me for, like, four months. Like, oh, it's so nice to see you, and everything like that. And then that's it. And then they don't see you for two months, whatever. They're like, okay, where have you been? At home. It takes over an hour to get to church on the bus. And that's traveling as well. And underground takes up a lot of spoons.
[00:31:42] Speaker A: It does. I love that spoon theory of, like, and I find that a really good way to describe it to people and help them understand narcolepsy. Like, actually, you have 20 spoons, and activities only take you, like, one spoon. But for me, I have, like, what, maybe twelve spoons if I'm lucky, if it's a good day. And activities take me, like, two or three spoons. So actually, by the time it gets to the evening and it's your birthday party, I really want to be there. I don't want to be sat at home by myself. But I have one spoon left. And I can either travel to your party and sit there and not say anything because I'm so tired, or I can make myself dinner and drag myself to bed, but I don't have any spoons left to even tidy up or talk to my friend on the phone or interact with my housemates.
And it is really hard to constantly advocate for yourself in that way and constantly have to say to your friends, like, look, I love you, and I want to see you and I want to be there for you at the really important events in your life, like birthday parties or engagement parties. But it takes a lot out of you as a person with narcolepsy. And I have felt really bad when I've let friends down when I haven't been able to go to their events. And I don't think they do always understand how tricky it is to get yourself to those spaces.
[00:33:08] Speaker B: Yes, I agree.
I had a friend, two of them. They had birthdays and I really wanted to go, but then I had to look at how I was going to get to their birthday.
I didn't really want to take the underground because it drains me. And how long was it going to take? If I took the bus and when I worked out how long it would take or if I took the uber, how much it would cost that way or whatever, it was just like, too expensive to take Uber, too long to take bus.
And I tried to get, when I got a sister or someone to see if they could come with me or that type of thing. It was just becoming so complicated. I was like, it's someone's birthday. It should be quite easy to do this. Why is this?
[00:33:56] Speaker A: It should be fun.
[00:33:57] Speaker B: Yeah. And I shouldn't be stressed about this whole thing. And I just got them gifts and posted to them and I didn't attend. But I don't think they know how bad I felt not attending their birthdays. It really did something to my soul to not go because I've known these people since I was eleven years old and I really want to attend. It was their 40th birthday and it hurt me not to go, but I really had to think about my health.
[00:34:24] Speaker A: Yeah, definitely. And it's important.
[00:34:26] Speaker B: And I had to also think, getting there is one thing, but then you have to think after the event, if you survive getting there and you're okay and you survive the party, then getting home. Oh, my gosh, now you're completely exhausted. You need to get back home. You need to get back home safe.
[00:34:44] Speaker A: Yes. That is the worst thing. So when going to parties or even just like meeting a friend in a pub for a meal or something, most of the time I can get myself there and I can maybe last an hour or two of conversation. If it's like, after work, this is on a good day, but getting back, there is something that happens where my brain is just like, you know what? You are absolutely exhausted right now. And the thought of having to navigate the tube or city mapper on my phone.
[00:35:18] Speaker B: Yes.
[00:35:18] Speaker A: Is like, so overwhelming that. I literally just want to cry.
[00:35:21] Speaker B: Yeah.
[00:35:23] Speaker A: You really have to take that into account when you're thinking about. It's not just, yeah, getting there, interacting with everyone at this event, it's getting home when your brain is like, so.
[00:35:32] Speaker B: Has shut off, basically. It's like, I don't want to do this. I do not want to navigate you to get home. This is draining. I want to sleep. This is what I want to do. And you're forcing me to think and to pivot. No.
[00:35:46] Speaker A: Yeah, it's so tricky.
[00:35:48] Speaker B: And then you fall asleep and then you wake up in a panic because you don't know where you are and you're trying to get your bearings. But please, God, or please let me not have gone past my station five stops and then have to get off the train, walk all the way around to the other platform, take another train backwards, and then when you're taking the train backwards, you're, like, tapping yourself, pinching yourself. Please stay awake so it doesn't happen again.
[00:36:14] Speaker A: Yeah. One of the things I find as well is my friends do like to go out to the pub for a drink. My partner likes to have a drink, and sometimes if I'm staying at his or he's staying at mine, he's had a few too many drinks. And so not only do I have to get myself home when my brain has shut off, but I also have to get him home.
[00:36:32] Speaker B: Oh, dear.
[00:36:32] Speaker A: I mean, I'm not saying he's, like, rolling on the floor or anything, but know in a merry state, not really focusing on the bus times and whatnot. And I find it so hard to keep my cool in those moments because I'm like, I literally need to be asleep right now and I've got to travel an hour home because it's London and everything takes so long.
Something I found hard navigating with friendships is not drinking since I've stopped. Started sodium oxybate, not so much now, but definitely when I was younger. So I started sodium oxbate when I was 23, which obviously, for most people is when they're in the prime of their life, going out all the time, particularly in London. I did find it really hard not being part of that and getting Fomo when my friends were going out and I would still join in as much as I could. But obviously, if you're not drinking, then your energy levels drop a lot quicker and you have much lower tolerance for drunk people.
[00:37:33] Speaker B: Yes.
[00:37:35] Speaker A: So, yeah, I could last a couple of hours, and then it would hit like, to be honest, even like 10:00 p.m. And I would be like, guys, I've got to get out of here. You're starting to repeat the same stories. Be tired. I can't hold conversation anymore. And I did feel like it did affect some of my relationships, which was sad because I used to love having those tipsy moments with your friends where you're dancing or telling each other, like, a funny story and really having those bonding moments. Something I found even harder is navigating my social life with new people, with not drinking. Because if a friend has, like, a new partner or a friend that they bring along to the social situation, everyone seems to fast forward their bonding by drinking together. And that just seems to make it so much easier. It's like a social lubricant. It makes conversation easier, gives them energy. And so having to kind of be.
[00:38:35] Speaker B: Fun and energetic without having that extra boost.
[00:38:41] Speaker A: Yeah, without having the boost of the alcohol in terms of energy and just like, kind of the social vibrancy it gives you, that has been, I guess, quite tricky. And I have to rely on my natural charisma.
It fluctuates.
[00:38:56] Speaker B: That's funny. No, I don't drink, so I haven't had the same experience as you. But hearing your story makes me realize maybe that's why my tolerance is so low for hanging out with people who are drinking. Because maybe that's why I used to get irritated faster when now it start to make sense. Yeah, maybe that's why recently I went to a friend's birthday and everyone was drinking wine and whatever. I was with these adults and everyone's sitting down eating and they're drinking wine and that's fine.
One drink, two glasses. They seem fine. Then dinner finished, and then they went downstairs to cupcake and stuff like that. And now some of them were on their fifth or 6th glass of wine. And I was just like, they're starting to behave very od. And I was just like, they should have stopped upstairs when they were on four. I don't know what's happening to them now. And then I danced about a couple of songs or whatever, and then I just sat down. And then I could tell that people might have felt that I was being antisocial or whatever, but I wasn't. It's just that I was not on alcohol, so I was not on this buz that they were on. And they're like, come on, dance with us. And I was like, okay, now just calm yourself. Like, leave me alone. I'll sit here when the nice song comes on that I want to dance to. I will get out, but I don't need to. And by 10:00 I was, like, looking at my watch, and I was thinking, yeah, I need to go home. Yeah. I was like, I've got sodoroxabate to take at 11:00 I need to start heading home. But I went with a friend, a neighbor, and she was also drinking, and she left her phone at home. We thought that she had left it in the uber, so we needed to go back together. So I was like, I had to wait until she was ready to go. Yeah. And so that means that I start to get more and more sort of irritated by everyone around me. And I was just like, oh, I haven't been around people who drink in a long time. It's very interesting to watch the behavior unfold. But I was just, like, starting to get very sort of like, yeah, I think I've had enough. The dinner was lovely, but this is too much for me now.
[00:41:17] Speaker A: Yeah, 100%. I think it's fair to say drunk people are really annoying, especially when you're sober.
Just, yeah, kind of like they start repeating the same things and spitting on you when they're talking, and you're like, I can't deal with this anymore.
[00:41:32] Speaker B: I need an out.
[00:41:35] Speaker A: Get me home.
[00:41:36] Speaker B: Yeah. And what's funny is that this is the time when you want your knockout seat to kick in, and it doesn't. You're just like, why should it look on my face that I'm, like, dying to sleep or something? No, it's not showing.
[00:41:49] Speaker A: It's funny as well, because I think when people are drinking, I think it does make people uncomfortable if you're not.
[00:41:56] Speaker B: Yes, I did feel that, because they would come up and say, oh, do you want to get a glass of. Why? Do you want to get something? I said, no, it's fine. And then say you had said to get something else, like a gingerbread or whatever, as soon as you'd finished, that they'd want to buy you, like, another one, because that's what they were doing for themselves, that they always need to top up or whatever, but it's just not necessary.
[00:42:21] Speaker A: Yeah. And I don't want to make my friends uncomfortable by not drinking. I mean, most of them know I'm a good secret keeper, so if anything happens when they're drunk, I'm not going to shout about it, make them feel bad.
But, yeah, I think when I've been in other situations with people I don't know as well, it does make them uncomfortable, and I don't really understand why, but they're like, oh, have a drink. Go on, it'll be fun. And trying to persuade you and you don't really want to be a mood killer right there and be like, well, I can't drink because I have a long term health condition, and blah, blah, blah.
[00:42:55] Speaker B: I shite down real quick. I just say I'm on medication.
[00:42:59] Speaker A: Yeah.
[00:43:02] Speaker B: I'm on very strong medication, which cannot be mixed with alcohol.
Okay, conversation is finished.
Vibe. Completely.
[00:43:16] Speaker A: But, yeah, luckily, my friends are getting older now, so they drink less anyway, which is good.
So they're up for more sober activities.
[00:43:28] Speaker B: That's good.
[00:43:29] Speaker A: Which is nice. I did have a weekend away recently, though, with friends. It was our ten year anniversary of starting uni.
[00:43:36] Speaker B: Oh, that's nice.
[00:43:37] Speaker A: Yeah, it went by in a flash.
It's funny because my partner asked me before the meeting, not the meeting. Sounds very formal before the get together, the trip away. Yeah. He was like, are you looking forward to the weekend away? And I was like, I don't know if you ever feel this, but I obviously love my friends and I love going away with them, but it does involve a lot of energy.
[00:44:01] Speaker B: Yes.
[00:44:02] Speaker A: So on one hand, I was really excited to see them. On the other hand, I was like, oh, God, this is going to absolutely kill me. Because not only do I have to potentially go on a night out, which for me lasts until, like, midnight maximum, but I have to socialize the entire day as well on both days.
So it's always a double edged sword with things like that.
[00:44:26] Speaker B: Yeah. And then you have to navigate everybody's personalities and everything.
[00:44:33] Speaker A: Luckily, my friendship group are pretty chill in terms of everyone gets on very well. There's no drama.
But, yeah, it's a shame with things like that. I find sometimes if I am invited on weekends away, like, I've just been invited on a work weekend away with a group of friends, and you don't want to miss out, but also, you're like, oh, do I want to make everyone kind of have to slow down their day or like, I'm going to have to nap in the middle of the day and I can't stay out late, so how is that going to work? You don't want to be a burden for other people.
[00:45:08] Speaker B: Yeah. Do you ever find that when you're really tired and you've been on trips with that group trip, you went with other people, that you can get more snappy when you really need to sleep?
[00:45:21] Speaker A: Yeah, 100%. It's so hard to regulate my emotions when I'm that tired.
I think sometimes the people around me can tell that I'm getting tired before I know myself because I start to maybe get sleepy eyes or I'm not really following the conversation anymore, just sort of like staring into the distance. But yeah, it's definitely harder to maintain my cool when I'm that tired. And if someone says something or does something that annoys me, usually I would probably let it go. But in that situation, if I'm ready for a nap and they piss me off, that's it, the tiger comes out.
[00:46:02] Speaker B: Yeah, I'm exactly the same.
And I feel bad if I've snapped at someone because I've been tired. But the thing is, it's like I don't think people realize when you're completely sleep deprived and then there's nonsense happening around you or people ask you silly questions.
It's just that your brain doesn't have filter or whatever. It's just that it says whatever it's feeling and it could be bad. And most of the time you don't actually remember everything that you said that was horrible. But this is why you shouldn't irritate me or say stuff to me when I am at the brink of the edge.
[00:46:57] Speaker A: Yeah. I've had to give my partner many warnings that sometimes he can wind me up. And it's funny, but there are other times when I'm very tired when it's not a good idea to wind me.
[00:47:08] Speaker B: Up because not the time.
[00:47:10] Speaker A: No, I will not get the joke, and it will be blown way out of proportion.
And I hate that feeling where you're just so exhausted that you literally want to cry.
And navigating that in public around people can be very difficult. And it's usually a sign for me, like, get your ass home. You need to nap on a bus or in your bed. Straight.
[00:47:34] Speaker B: Yeah, yeah, definitely.
[00:47:36] Speaker A: Just an exit situation needed.
[00:47:38] Speaker B: When I went to Cornwall on a church trip, yeah. I had to take myself away from people so that I wouldn't kill them.
The fuse was, like, real strong, and it was just like so many personalities, all these people that I didn't know on the trip. And so I was just like, oh, my God, I forgot what it's like to have to navigate so many new people. My brain was just like, oh, no, we cannot have this.
I remember it was something simple. I think someone was like, can she use my blanket or something? And I was like, no, you can't use my blanket because I've used it to put as extra as a pillow because we're sleeping, like, on sleeping bags on top of a sofa bed.
[00:48:28] Speaker A: Yeah.
[00:48:28] Speaker B: And I was like, no. And she's like, oh, I'm really cold. I said, no, you can't have it. And I was thinking, why is she asking, like, keep asking me for it? What's wrong with her? I just had to remove myself from the situation.
How annoying is this? And people were around me, like, looking at me, like, really strangely, like, it's just a blanket. And I was just like, oh, you cannot have it. I don't care if it's cold.
[00:48:51] Speaker A: I'm tired right now, and I'm not rational.
Don't ask me questions.
[00:48:55] Speaker B: Yeah.
[00:48:56] Speaker A: Something that when you go to situations like that, when you're with a group away or even when I was traveling, I did find it quite tiring to constantly have to advocate for myself. So saying to people, you know what? This is the condition I have and this is the symptoms. So I'm going to have to nap in the middle of the day and I'm going to get a bit tired sometimes. Obviously, it's so important to do because it does make people around you more aware of what's happening. Even having that conversation sometimes takes a lot of energy.
[00:49:29] Speaker B: Yeah, it does. You just wish that they would just know or you just wouldn't have to have the conversation in the first place. Yeah.
[00:49:37] Speaker A: I find it frustrating at work sometimes because we often have new people join the team. So there might be, like, agency staff or locum staff who are really friendly, and they might invite me for lunch, which is really nice, but I have my routine at work where I have a nap in my lunch break because that helps me get through the rest of the day. And so it's a fine balance sometimes because I don't want them to think I'm rude and not having lunch with them every day. But then they see me walking out the room, so they're like, well, where is she going?
[00:50:10] Speaker B: Having lunch by yourself? She won't have lunch with us, but she wants to do her own thing. Fine.
[00:50:15] Speaker A: Exactly. But then having to say to new people all the time, well, actually, I have this health condition and it can make you feel quite vulnerable having to have that conversation with new people all the time.
[00:50:29] Speaker B: Did they ever say stuff to you like, oh, do you want some coffee? Or you should have a red ball, and that will help. Stuff like that?
[00:50:39] Speaker A: Yeah. I've definitely had some unsolicited advice before. I remember when I was in one of my previous jobs and I told someone that I had narcolepsy and they were like, oh, have you tried hypnotherapy? And I was like, no, haven't tried that one. They were like, what about acupuncture? I was like, right, listen, it's a neurological condition. It's the brain chemicals, okay? I don't think that's going to be changed by a few needles. But if it did, I would have tried it by now already. Yeah, there's been some interesting advice.
[00:51:12] Speaker B: It's always interesting, the advice, because I just always think, if this was the cure or if this was the thing, do you not think the pharmaceutical companies would have bottled it to buy now and be selling it to the thousands? Because everyone would be cured by narcolepsy by now. They'd have done it. Yeah.
[00:51:33] Speaker A: It's like, sorry, you're not, like, the most brainier person in the world. Finally discovered that coffee is going to solve all our problems.
Yeah. It's always fun and games, trying to work out who to tell and how to explain it as well in the clearest way, without having to give too much of yourself away.
[00:51:53] Speaker B: In that moment, a friend from Anna from Spain, she was saying how she changed the spoon theory to using it to describe it as a battery for a mobile phone.
[00:52:08] Speaker A: I like that.
[00:52:08] Speaker B: And she goes, she found that people understood it more because they understand, like, when their battery is on 5% and they need to plug it in, and the urgency.
Oh, my God, they get it. And so she goes, she explained it to them that way, and they were.
[00:52:24] Speaker A: Like, wow, their mind is blown.
[00:52:26] Speaker B: Yes.
[00:52:27] Speaker A: I've done that before with. I've told people, like, my brain is like a malfunctioning iPhone. The battery is real old.
It turns off randomly. It goes from, like, 99% to suddenly it has 1%, and it needs to turn off right away.
Yeah. It's always a good way to pitch it with the technology.
[00:52:48] Speaker B: Yeah. So I tried that for college when I started in September, the hairdressing course. And it seemed to work. Yeah.
[00:52:57] Speaker A: It was successful.
[00:52:58] Speaker B: Yeah. They seem to understand it, especially the teenagers. A lot of teenagers.
I said, tell them when I wake up at. You wake up, you're at 100%. When I wake up at 70%. And before, when I was on stimulants, I would have taken some medication that would have gone back up to 100, but I don't have stimulants. So then I had to have a shower. 10% gone and had breakfast. 10% gone.
I had to take a bus to college. 10% gone. Like what?
We did class.
You're already gone past 50 already. I said, yeah, I need to nap to top up, otherwise we're going down by the end of the day. I'm going home. I'm on 5%. You know what that's like.
[00:53:51] Speaker A: I love that. Actually. I've never really explained the spoon theory as the phone analogy in that much detail, but I think that definitely will resonate more with the Gen Z's. They'll get that. They'll be like, oh God. Okay, the phone battery's dying. I think I'm going to steal that one.
[00:54:07] Speaker B: Yeah.
So, Liz, thank you for talking to us about travel and work and everything in between. And everything in between. Exactly.
And we wish you all the best in your job and your life.
[00:54:25] Speaker A: Thank you.
[00:54:26] Speaker B: Yeah. And maybe you can come again and speak on another topic in the future.
[00:54:31] Speaker A: Yeah, I'd love to. And also, I just want to say, in case I put anyone off travel with some of my horror stories, it was actually an amazing experience and I really recommend looking into travel groups because that was an easier option. And also you can contact the company beforehand and say, like, this is my situation. Do you think it can be accommodated for, which is what I did? And they said like, well, we have a tour bus that you can nap on, so that might work. But even solo travel, finding somewhere to go where you feel safe and just going by your own routine, it's an amazing sense of freedom. So I would really recommend it. But also make sure you look into the countries that you can take sodium oxpate to. And yeah, check the UK embassy's websites.
[00:55:18] Speaker B: Very good. Good advice.
[00:55:20] Speaker A: Thank you, Liz, thanks.
[00:55:21] Speaker B: 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 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, it's.
