Episode Transcript
[00:00:00] Speaker A: Hi everyone. Welcome to Narcolepsy Navigators. My name is Kerly Bwoga. I'm your host.
[00:00:47] Speaker B: And I'm Liz, your co host for today. And we both have narcolepsy type 1.
[00:00:52] Speaker A: Today we're joined by Glenn from Australia. And the topic today is road to correct diagnosis.
[00:00:57] Speaker C: This.
[00:00:57] Speaker A: Hi, Glenn, how are you doing?
[00:00:59] Speaker C: Hi, I'm well, thanks. How, how are you both?
[00:01:03] Speaker A: Yeah, I'm okay.
It's been a sleepy day. Well, your day is just starting, isn't it, where you are? So for some perspective as you're recording this Right now, it's 7:14 in London and it is 6:14am In Sydney the next day. So it's a Sunday in London and it is Monday.
Yes.
[00:01:29] Speaker B: Ben, tell us a bit about yourself and how old you are, if you like, and what you do day to day and a bit about your diagnosis as well.
[00:01:37] Speaker C: Yeah, sure. Well, I'm 57. I live in Sydney, Australia, which is where I was born and bred. I work in local government or what you might call civil service.
[00:01:51] Speaker D: I work full time.
[00:01:54] Speaker C: As to my diagnosis, well, I started experiencing symptoms at around age 14.
[00:02:05] Speaker D: And the short version is it took about.
About 20 years to be correctly diagnosed with narcolepsy.
[00:02:14] Speaker A: That's a long journey. 20 years.
[00:02:17] Speaker C: Yes.
[00:02:18] Speaker D: Way too long.
[00:02:19] Speaker A: Do you have narcolepsy type 1 or type 2?
[00:02:23] Speaker C: Type 2.
[00:02:24] Speaker A: We have type 2. Okay. Yes, thank you for sharing that with us.
[00:02:28] Speaker B: And what are your symptoms like at the moment?
[00:02:31] Speaker C: Well, I think like a lot of people, you have good days and bad days. Generally it's not too bad, but that's, you know, every day can provide a challenge medicated with dexamphetamine, which works well for the most part.
But of course, when there are things that might interrupt your sleep more than normal, then that can have effects.
[00:02:59] Speaker B: And how many hours of sleep a night would you say that you get, roughly?
[00:03:07] Speaker C: Usually around seven, six to seven.
[00:03:12] Speaker B: Okay. And does that get you through the day or is that not quite enough for you?
[00:03:19] Speaker C: Generally it gets me through the day, depending, of course, on the quality of sleep. I tend to find that I wake up at least a couple of times a night. Then sometimes you lie there longer than others trying to get back to sleep. Other times you'll go back to sleep quickly. So.
But generally, yeah, I get through my days okay with my medication.
[00:03:42] Speaker A: Okay, so what medications are you on? Are you taking daytime medication and nighttime or just daytime?
[00:03:49] Speaker C: Just daytime. Which I take 5 milligrams of dexamphetamine three times a day.
[00:03:55] Speaker B: And do you have any reasonable adjustments at work at all?
[00:03:58] Speaker C: They're pretty good at work. They're aware of my condition and there's not really that many adjustments. Desk bound most of the time, although I do occasionally do things out in the field, so.
But if I ask for any accommodation that they would give it, but generally they're aware and it might be just a case of even, you know, if I say I'm in a meeting, for example, and someone notices I'm having a microsleep, they might just message me external to the meeting and just check. Are you okay? Have you taken your medication, etc. Etc.
[00:04:37] Speaker A: How long have you been working for this company?
[00:04:41] Speaker C: I've been there over 17 years, actually.
[00:04:44] Speaker A: Oh, that's a long time. So, yes, they're very used to you and everything.
[00:04:50] Speaker C: Yes.
[00:04:50] Speaker B: Do you feel like having narcolepsy when you were not diagnosed and now that you're diagnosed has impacted your career choices at all?
[00:04:59] Speaker C: I don't know if it's impacted it directly, but there were certainly effects on how I did my job, particularly when I was undiagnosed and.
Yeah, well, actually, no, that's, that's not quite true. In one sense, there was a direct, direct impact a place I was working at the time of diagnosis and my episodes were getting more severe in terms of trying to stay awake at work and, and ultimately I lost that job. I, I didn't completely get fired, but I was sent back to a lower position where, where I had come from. Now, in fairness, that was. They use the medical condition as an excuse because there were some other things going on that, you know, they basically didn't want to spend any time training me up in the Rolex, expected me to just jump straight in and do everything.
So yeah, that was an excuse. But if not for that happening, mind you, I wouldn't have been diagnosed. So it actually worked out for the best.
[00:06:13] Speaker B: Oh, interesting. So that was a kind of like a catalyst for you then, seeking advice and investigation.
[00:06:19] Speaker C: Yes, because if I go back a bit further, at another organization I was at for a long time, I was having episodes of excessive daytime sleepiness.
And it would manifest. Like, in particular, I remember a time we were away at a conference and you just sitting there, you know, the room was set up in a horseshoe shape and I was at the back, so I'm directly facing any of the presenters.
And I was having trouble there, you know, I was nodding off and, you know, like there were people like the executive director who were presenting and it was, you know, there are a few wisecracks made by colleagues, including the executive director. So that was pretty embarrassing because you don't know what's going on or why.
So at that point I.
That's when I first sought out some information and I had heard about sleep apnea. So I spoke to my general physician and lot to cut a long story short there, I ended up getting tested, having a sleep study, and I was diagnosed with obstructive sleep apnea.
And I didn't really have any success. Tried CPAP at the time and what I found was that I would rip the mask off in my sleep, so it just wasn't doing any good. And in the end, the specialist was not very helpful. At some point I found out, and I can't remember how, but I found out that had a financial interest in the company that was importing the CPAP devices. So when I asked him for alternatives, he didn't really have any and basically told me it was my choice. So my choice was to do nothing.
So then fast forward some years and that's when I was having severe episodes again at work and I was given certain ultimatums. And this was.
Internet was still in its infancy and I couldn't really find much, so I couldn't see any option but to go back to the specialist I'd seen before.
As it happened, in a stroke of good fortune, he happened to be on leave, but they did have someone filling in and so we had to start again because of the gap. And I got treated again. I had lost significant weight, so the sleep apnea was still there, but it was only considered mild and not enough to explain the episode. So then I was tested further and the narcolepsy was diagnosed.
[00:09:22] Speaker A: So that's really good in that case for you, especially the fact that you lost weight, because that really helped. Otherwise they would have said, oh, yeah, it would have been more likely for them to have wanted to blame the sleep apnea still. Yes, but because you had lost weight, that really helped because then they could say, oh yeah, definitely, it's your sleep apnea has improved even though you hadn't been using the machine.
Which I found very interesting that that doctor gave you that choice because sleep apnea is very dangerous. So I find it interesting that he was just like, no, you can use it or you cannot use it. It's like, well, you're stopping breathing at night and you're.
[00:10:02] Speaker C: Yes, yes. Thinking about that. That is kind of strange. I just didn't take to him at all. And it's funny, in one of the support groups I'm in, an Australian one might have been last year, there was some people asking for recommendations for a specialist and this, this guy's name came up and, oh, I see. So and so. And he's fantastic.
And I did put a comment in, only that, look, my experience was very different, but I'm glad that you had a good experience.
I didn't. You know, I'm not going to go slander someone on social media, but I very much would have liked to because I just thought that he was less than helpful.
[00:10:52] Speaker B: I feel like we've heard that a lot where, you know, especially talking to people who are outside of the uk, where the healthcare situation is different, and even in the uk that specialists, you know, there aren't a lot of sleep specialists and even when there are, unfortunately there's not a whole lot of research into things like narcolepsy, other sleep conditions, so there's not a lot of awareness. And then it means that even when people are very clearly presenting with sleep difficulties, they don't get put forward for sleep studies or they don't get put forward for the right tests and then it just prolongs the whole diagnosis process.
[00:11:32] Speaker C: Yeah, that's certainly an issue. I mean, I'd never even heard of narcolepsy and it was only that I saw a report on the news the first time around that mentioned sleep apnea. And that's when I thought, oh, that might explain what's going on with me and prompted me to make inquiries and then had my first sleep study.
[00:11:58] Speaker A: After you were diagnosed, did you feel like a relief after you did, like your test and did they start your medication straight away?
[00:12:07] Speaker C: Yeah. Oh, it was, it was a huge relief just to know that there was something apart from sleep apnea, which I had had, as I mentioned, a bad experience in trying any sort of treatment to know that there was something else and that it could be treated? Yeah, it was a huge relief and it was literally life changing.
[00:12:33] Speaker B: And if you take us right back to the beginning, what were the main symptoms that you were experiencing from that young age when you, you first started experiencing it?
[00:12:44] Speaker C: Well, with hindsight, I believe that the onset was a result of severe head trauma that I had at around age 13 or 14.
Thirteen, actually, now that I think about it. And I had a fractured skull. And then from around that time onwards, I would, particularly in the evenings, I would be super tired and struggle to stay awake in front of the tv and it would be really frustrating, like you're watching a TV show, a movie or whatever, and of course I want to see it through to the end. And the main memory that sticks out from then is my mother always, glenn, go to bed. And it's like I would fight that urge. And to a certain extent, possibly I still do that today. It's like, no, I will decide what time I go to bed. No, no one's, no one's telling me to go to bed. Even if I know it's the right thing to do. It's like, no.
Yeah, so the sentence, it was mainly in the evenings or when I would, you know, for example, even when I'd finished school and I go out, like, particularly to the movies. And I had this girl that I was keen on at the time, that was someone from school, and we ended up reconnecting and used to go out all the time. And I remember one time we went to movie and I could barely stay awake through the course of the movie. And then on the way home, she basically said, look, if that happens again, that's it, we're done.
I was devastated, you know, because it's not like I was doing it on purpose, you know, it's not like, yeah, I'll show you, I'll just fall asleep.
I had no idea what's going on. And I desperately wanted to stay awake so I could follow the plot of the movie. You know, you spend hard earned cash on a cinema ticket and it's like, yeah, I want to get my money's worth. So anyway, yeah, they were the main symptoms. So. But then, as I mentioned, it developed further to a point where I was struggling at work, you know, like in, in meetings and training courses, particularly where you just trying to sit there and pay attention and it's like, you know, and you just be, you know, nodding off and it's like, oh, man. And yes, you feel bad because you don't know why it's happening. And then other people, you know, they'll, they'll make their own judgments whether, whether they're expressed or not, you know, they're still judging you. Like, like, oh, what's he been doing all night? Or isn't he interested in laughing, in my presentation, things like that. So you're always thinking, oh, man, this is. This is terrible.
[00:15:56] Speaker B: It's so true. How easily it is misunderstood, the symptoms. I find it a lot with yawning, because obviously, you know, we're very tired people. We yawn a lot. I yawn probably, like, God knows how many times a day. And if people don't know about your condition, and even if they do, I sometimes wonder, like, how that comes across. You don't want people to think that you're, you know, bored of what they're saying. It's just like you can't control it. And the other extreme of that, obviously, is falling asleep as well.
Yeah, it's frustrating that sometimes it sends a message that we really don't mean to send at all.
[00:16:32] Speaker A: I didn't realize that we yawned a lot until I started doing this podcast.
Seriously, Like, I never realized at all. And then all of a sudden, every time I talk to someone with narcolepsy, I would hear them yawning, and I'd be like, oh, my gosh, sweet. These people are yawning so much. If they're yawning so much, I must be yawning a lot as well. Like, oh, my gosh, how could I never notice this all these years? And seriously, it's weird, but all these years, I never associated yawning and narcolepsy together until I started this podcast.
[00:17:08] Speaker B: And also, we're always doing the podcast in the evening, so it's like, I might make it through the day without yawning as often, but by the time it hits 6:00, I probably yawn, like, every five minutes or something. Ridiculous. Glenn, what stopped you from investigating what was going on? Did you think that it was within the realm of a normal experience, or did you just not know where to go for answers?
[00:17:34] Speaker C: Well, if I go back to when I was 14, there were a lot of things going on actually, at the time because I'd gone to see my general physician and he was on leave and saw a different doctor, and I had some chest issues, and he basically straight away said, oh, he has asthma. That's like, oh, okay. So then I got sent to Children's Hospital, and they started looking into all sorts of things at the time, which one of the things was my height. And anyway, I got diagnosed with osteoporosis at a young age, and that was.
That was the result of a misdiagnosis when I was only we lad, as it were, where specialist had misdiagnosed me as being allergic to all dairy products.
So I never got sufficient calcium in my formative years, so my bones didn't develop as they should have. So I had that going on. And then also, following their head trauma, I experienced episodes of vertigo, which couldn't be totally explained. Like, it would be, for example, just going up in a lift and when the lift would stop at whatever floor, I would feel like I'm still going up, and it's just like, oh, man. So I had all that and they were trying to. They tried to figure that out and I got sent to a different specialist to check that and they couldn't find any reason for it. So, anyway, then going, you know, a few years forward, particularly around the time of that conference, I mentioned where I started having problems. So that's when, coincidentally, I first heard of sleep apnea and went back to my physician and asked if I could get a sleep study and he asked why. And then I explained my symptoms. So, yeah, off I went. And as I said, I didn't find that specialist particularly helpful and I didn't know what else to do, so I did nothing. When he couldn't give me any other options, I'm like, well, I just felt stuck. And I felt like. Not that I'd wasted my time, because obviously they confirmed there was an issue, but I had no idea how to treat that.
And it was only years later, when it was severely impacting my work. Then I then got retested and diagnosed with narcolepsy. And in between, it never occurred to me that there could be something else explaining my symptoms. I'd never heard of narcolepsy, so I guess, you know, struggle through as best as I could.
[00:20:45] Speaker B: What really baffles me is that when you went to the sleep specialist, or even your GP and said, I can't stay awake, that no one thought, oh, it could be narcolepsy earlier on.
[00:20:59] Speaker C: Yeah, with hindsight, that baffles me to an extent. I just think that there's a lot of ignorance out there. People don't necessarily know about it, including the medical profession. I think there is more knowledge now, but still not a lot. And my understanding is, like, through all the years of study they have to do to become a doctor, that sleep health really only forms a tiny part of what they do.
[00:21:28] Speaker A: Yeah, it's very, very small indeed. Noclips is like a day of education.
[00:21:36] Speaker C: Yes. Well, I'll give you an example of how that can manifest, which was one time when I was. I'd applied for a job and was basically successful and as part of that, I had to do a medical test. Now, so I go along to their doctor, and I mentioned that I was on dexamphetamine because I figured I had to do a urine test, so I figured it would show up in their screening. So I explained what I had while I was on that medication. And this doctor just said to me, oh, are you sure you have it? Maybe you're just depressed. Which I found absolutely staggering because considering the nature of the medication and how tightly controlled the supply is, it's like, how do you not get that? I can't just walk into a pharmacy and get this medication. You know, I've had to have all sorts of tests and whatnot. Yeah, yeah, I'm depressed. No, I'm depressed by your lack of knowledge on this subject, but otherwise, no, I'm doing quite fine, thank you. I didn't say that to him, but I just. I assured him that, no, no, I'm not suffering depression.
[00:22:54] Speaker B: It's also just so patronizing as well that he's questioning your knowledge. Like, you're the expert in your condition because you've lived with it however many years. So for him to say, oh, are you sure that's your condition? It's like, yeah, I'm pretty sure. Like, you've known me for five minutes and I've known myself for years. Like, I know what's going on here.
[00:23:15] Speaker A: It's also very rude to the previous doctor who diagnosed you, because by him saying that, he's suggesting that the doctor who diagnosed you was wrong and made a mistake and told you wrong information and the tests were wrong, but he is right and he's just met you, so that is what's funny.
[00:23:38] Speaker C: Yeah, and I'm very fortunate that, as I said, when I went to the sleep specialist second time around and saw a different doctor, he was just so much better. And he's still my training specialist to this day, all those years later. So. And he's been so good, like, even right from the start, because I turned up, as I mentioned, I was having episodes at work. So I turned up with this letter from my employer which basically said that, you know, something to the effect of, oh, we need a reply within 24 hours, blah, blah, blah. And. And he's reading this letter and he said to me, they're being assholes to you. And I'm like, yeah, you don't have to tell me. I'm living it every day. You know, my manager at the time, she was just awful. And it was one of the worst times of my life. But the end result is I would go through it again just to get. Get the correct diagnosis. So I was fortunate in that respect.
[00:24:47] Speaker B: Do you feel like you face discrimination at work based on your condition?
[00:24:54] Speaker C: No, I'm lucky. I've never felt that. It's like I'm happy to tell people about it because I think it's important firstly to provide awareness that it even exists, and then that people can have some sort of understanding as to what's going on with me, that it's not anything, you know, sinister as to why I might be struggling to pay attention to something. You know, it's not that I've been out partying all night or that I'm bored and disinterested, so I find that helps. But of course, there's always new people and, you know, you don't always want to be like, oh, hi, yeah, I'm Glenn and I have narcolepsy. Hi. You know, and, yeah, a lot of people still would never have even heard of that, but. But generally, yeah, people in my immediate team and across my business unit, they're aware of it. So.
And. And other times there might be the opportunity to mention something like if I am in a training course. And it's not to say that every time I'm in a training course, I struggle. It just depends if I'm in sleep debt, for example, that will provide more challenges. But if things have been going well, a lot of the times I can be fully alert and no one would even know that I have the condition.
[00:26:28] Speaker A: What's it like in Australia with narcolepsy? Is there a lot of support there in your area where you're living? Sydney. You said it was Sydney, correct?
[00:26:38] Speaker C: Yes.
Well, I mean, I don't know what it's like elsewhere. I find it pretty good in that. Firstly, I found Narcolepsy Support group on Facebook, which is of course based in the usa, and I joined up there and. And that was an eye opener. And then from there it led me to the Narcolepsy Australia group and just being involved in that, and I'm on the committee there and help organize meetups and just to be a part of a community where you know that they understand your symptoms and the effects that it has, it's very affirming, I find, to be a part of that. And which is why I'm happy to do something like this, because, yeah, if I can share my story, and it even made a difference to one person who might hear something, see something, go, oh, yeah, okay, you know, set that Light bulb off. And just for people to know that they aren't alone, I think that's really important.
[00:27:45] Speaker A: Well, thank you, Glenn, for taking part in and helping in your community in Australia. That's really good. You know, we need more advocates out there, so thank you for giving your time and stuff. That's really cool. Is there, should I say, a lot of representation of men in the Australian narcolepsy?
[00:28:05] Speaker C: Well, there are some, but I tend to find across the board it seems to be more females that are involved in all of this. And it's not that women have it more. You know, I think of course there's a stereotype about men and their health and how they, you know, just ignore things.
So I certainly. And I think there is a stereotype there for a reason. So I suspect a lot of men just ignore it and, you know, no, I don't need anything. I'll just tough this out and. Which is unfortunate, but yeah, there's definitely far more female representation in all of this.
[00:28:47] Speaker B: That's why I think it's so important to do these things and to have a variety of people sharing their views because like you said, even if just one person sees that and can relate and that then helps them to maybe accept more their diagnosis. Yeah. Kind of face it a bit more. That's just so important.
[00:29:11] Speaker C: Yeah. And just to let people know that you can still later rewarding life, basically. You know, there are challenges, of course, but. But life is generally pretty good. Yeah.
[00:29:22] Speaker A: And they don't have to be ashamed. That's another thing I want to get out there, especially to the men, that it's okay to admit it and it's not something that you should be ashamed of.
[00:29:33] Speaker C: Yes, absolutely. Since I've been diagnosed, I've never been ashamed about it. It's not like I've done something or not done something that caused it. It's. Well, apart from walking out in front of a car, that wasn't entirely helpful. And I would certainly make a different choice there if I had my options again. But yeah, there's no reason to be ashamed. Although I get that some people are. That's extremely unfortunate.
[00:30:01] Speaker B: And do you have a supportive social circle, family life over there in Sydney?
[00:30:08] Speaker C: Well, generally, yes. My family are supportive and my friends are supportive mostly. I did have one rather disappointing experience, I guess you would say, going back some years.
There's basically my medication had run out and I was waiting on a script from my specialist and anyway, finally the script turned up and so I went to the pharmacy to get it filled and this particular day was a Friday. I had the day off and I was meeting up with friends for an extended lunch.
So it's like, oh, great, I have my new medication and everything's good to go. And when I got to the pharmacy, there was a problem with the script. The specialists had made an error. And anyway, they managed to call him and he insisted that, no, there was no error with the script. So there was the pharmacy saying, it's wrong, the specialist saying, no, it isn't. And there's me in the middle with no, you know, no medication. And basically they said, look, you can try another pharmacy and see they might fill it. But which I couldn't do till the next day anyway. And I still.
In the end, I had to speak to the personal assistant for the specialist and ask them, look, please, can he just send a new one? I'm not sure what they're saying, but if he could just send it, it'll be really helpful, which he ended up doing. And then that finally got resolved. But in the meantime, I met up with a group of friends, and in this circle there are a couple of them that can behave rather poorly in a group situation.
And which is what happened on this particular Friday where we're sitting in the beer garden of a pub and we'd had lunch and we're all just sitting around and I fell into a deep sleep. And anyway, they all.
They all got up and moved inside the pub at some point and just left me there with a note sort of stuck on me. That was worse. The effect of a free to a good home or something like that, that was.
That was devastating at the time, you know, when I woke up and I saw that and I made my way inside, found them, they had taken at least my backpack with them, and I just picked up my backpack and walked out. And I had something else on that evening anyway, so I just left and I'm just like, wow, that's. You know, because what would other people know about why I'm there asleep? And, you know, it's like, nah, that's. That was poor. And I've never forgotten how I felt that day. You know, even now, it's still probably a bit raw, you know, so.
[00:33:30] Speaker A: I'm sorry you had to go through that, Glenn.
[00:33:32] Speaker C: Yeah, that was. That was no fun. But generally people are pretty good. They're pretty understanding and, you know, like, I'll have friends say, like, if I'm at the cinema or something, and they'll say, oh, do you want me to wake you? And I'll be like, yeah, I didn't pay $25 to sleep. I can do that at home for free, you know. You know, so they'll elbow me or whatever, you know. So, yeah, that's fine.
[00:33:57] Speaker B: How did you actually feel in that situation when your friends left you outside with the note on you?
[00:34:03] Speaker C: Oh, well, I felt like. Wanted to shrivel up and die. You know, I just wanted to be anywhere except there. And I couldn't believe that they would do that. Well, I could and I couldn't. It's like, yeah, they can be basically, so a couple of them. And it's like, yeah, okay, well, I'm glad, you know, you managed to amuse yourself because you certainly didn't amuse me in any way, shape or form.
[00:34:33] Speaker B: And how did you deal with that situation? Did you just kind of brush it under the rug or did it not sit well with you going forward?
[00:34:41] Speaker C: Oh, I probably just brush it under the rug to an extent. You know, it's like, I guess I made certain allowances, not that I excused what they did.
[00:34:51] Speaker D: Ultimately, it was my choice to keep interacting with them or not, and which I did. And I just. It's like, yeah, well, that's what they're like. And that's reflected. Touching on them, certainly not on me. I mean, over the years since we're probably not quite as close as we.
Or I'm certainly not as close with them as they were. And there's been a few other episodes which completely unrelated to my condition, you know, like one of the. The ring leaders that would have been behind that, you know, like at some point he was hiding people doing me off Facebook and took great delight in telling other people in that I know and telling them that he'd done that, you know, like it was some sort of magic one. So that just confirmed to me, well, yeah, they can be really hot at times, and I can't change that. It's my choice.
[00:35:50] Speaker B: I've had to tell friends off before when I was much younger for taking photos of me when I was sleeping.
[00:35:57] Speaker A: Ah.
[00:35:59] Speaker B: I think it was before I was diagnosed and when I was after diagnosed, when I'd just been diagnosed and if we went on road trips or things together and I fell asleep in the car, like on the bus, and they take photos of me as a joke. And eventually I was like, guys, I don't find that funny because I'm not in control of it.
And, you know, I didn't look great when I sleep, when I just have the sleep attack, you know, got my eyes probably fluttering Open, probably drooling and, you know, the whole work's going on.
[00:36:32] Speaker D: Yes.
[00:36:34] Speaker B: So you're telling us about your. Your social circle and how do you find it balancing having narcolepsy and a social life as well?
[00:36:44] Speaker C: Well, I don't let it impede my social life. I do whatever I want to do and perhaps suffer for it at times. Like, there might come a weekend day where it's just like, nope, that's it. I'll have all these things, like just basic chores or whatever planned, and none of it might happen as a consequence of what I've done, you know, leading up to that. And the way I see it is, well, that's okay. I'll do them when I can do them. So, yeah, I mean, it comes back to the spoon theory, I guess, that you've got X amount of spoons and I'm not missing out on things that I want to do. So other things can wait if they, you know, that's just how it is. And especially finally, after many years. I live alone, so it only affects me, and that's fine. I can forgive myself quite easily.
[00:37:47] Speaker A: I like that. Don't get stressed. Go and do the stuff you want to do. The dishes can wait.
[00:37:53] Speaker C: Yeah, that's it.
[00:37:56] Speaker A: I like that. I should tell that to myself more often.
Housework can wait.
[00:38:03] Speaker C: Yes.
[00:38:06] Speaker B: It's so true. I think it's kind of more complicated when you live with someone because I've just moved in with my partner and sometimes the weekend comes along and I'm like, right, I want to go and do something nice for myself in the week. I'm totally written off after work.
[00:38:23] Speaker C: Yeah.
[00:38:23] Speaker B: So I might go out for, you know, the majority of the day, as much as I can do. And then I come home and say, he cooks dinner. And that means it's my 10 to wash up. Right. But I've run out of spoons because I've used all my spoons. Going out and doing the nice thing for myself.
[00:38:39] Speaker C: Yeah.
[00:38:40] Speaker B: And then that's quite a hard conversation of being like, okay, I didn't leave enough spoons to do the washing up and I'm really sorry. So it has to wait till the next day. But I can see why, you know, living alone actually gives you the benefit of you can use your spoons however you want because no one else is really relying on you to. To help with things.
[00:39:01] Speaker C: Yes. Although I try to keep things in reasonable auto in case, you know, someone does come over at short notice, for example. And to that end, I saw something once called the Two minute rule, which is basically if something takes two minutes to do, just do it on the spot and get rid of it. And that way it doesn't build up into something more challenging. I try to adopt that across the board, including at work. You know, it's like, yeah, it might not be the single most important thing that it's on my agenda, but if it only takes two minutes and something else might be taking hours, yeah, if I can just get rid of that and it's one thing off the list, bang, we're done. Good.
So I try and do that at work and at home and it works pretty well.
[00:39:56] Speaker A: That's good advice. I'm going to take that one actually, because I tend to put away the two minute things and focus on the bigger stuff and then that, that two minute thing ends up adding up to a massive.
[00:40:08] Speaker C: Yeah, yeah. And of course for someone else it might not be super important to you, but to them it might be super important and at least they feel like, yes, you are paying them attention. I mean, another thing along those lines, I was fortunate pre diagnosis, and this is going back around the time of that conference. I talked about the employer I had there. We did this training course on stress. And the main takeaway from me, well, the facilitator told us in summary that stress is a choice. Like you have a choice how you react to any situation. Now, I think that can be an oversimplification. Not always, but there are times when it's pretty difficult not to react in certain ways. But the lesson she gave at the time, which changed my life as much as anything, even my diagnosis was she talked about basically life being a circle. Like she drew on the whiteboard a circle. And she said inside the circle are things that are within your power to change. Like, okay, what will I have for lunch today? What color socks will I put on, for example, what will I watch on TV tonight? Those sort of things. And then outside the circle, things that you can't change, whether that be, you know, how heavy the traffic will be on the way to work, or will it rain on Sunday and so on. And what she suggested to us was that if you focus what's inside the circle, that two things will happen. One, you'll have a lot less stress because you're only worrying about things that you can actually have an impact on. And two, she said you'll find that over time the circle will gradually expand and more things fall under your control. And I can't say for sure the second one has happened, but certainly the first One. And I find that helpful, particularly with chronic illness, to not worry about what I, what I can't change, you know.
[00:42:28] Speaker A: So, yeah, that's such good advice, Glenn. Thank you for sharing that.
[00:42:34] Speaker C: Just when I heard it, like, it just really resonated. And that's how I live my life to the point where it is noticeable, where I have people commenting on that like, I wish everyone was like you, not worrying about the little things. It's like, well, what's the point?
[00:42:50] Speaker B: And do you have any other strategies that you use day to day that helps you manage the emotions that come.
[00:42:57] Speaker C: Up from narcolepsy, particularly? It's just a case of, you know, I do, I just try and get, get the most out of every day. So I know I've got certain responsibilities at work. So again, that's, I don't think it's unique to someone with narcolepsy, but just, you know, breaking down tasks into smaller segments, as it were, or, you know, just you can focus on one thing and get that done rather than get overwhelmed, as it were, by, I've got so much to do, I don't know where to begin. Or you pick somewhere and let's do that and then, which is encouraging. When you can chalk that off and it's done, then move on to something else. And also, I suppose one thing I could be better at is asking for help sometimes, but I think that's true of a lot of people. Again, not just people with narcolepsy, when you do have too much on your plate. But I guess to a certain extent I inherited that from my mother, who was the classic people pleaser personality. I do like helping people, so, you know, sometimes I take on more than I should and that's something I'm always trying to work on.
[00:44:20] Speaker D: So.
[00:44:22] Speaker B: Do you think having narcolepsy has encouraged you or forced you to listen to your body more than you would have if you didn't have it?
[00:44:32] Speaker C: Oh, that definitely. I mean, I never had any great reason to listen to my body before.
So yeah, that's certainly, you know, sometimes you want to listen and you just can't for various reasons. Like, for example, the other night, just watching tv, I worked a late shift, which meant I didn't get home till about 8pm and just watching TV. And then like, I remember at some point just falling asleep, you know, I dozed off in front of the tv and then you sort of wake and it's like, yeah, yeah, look, I need to just turn that off and go to bed. And then it's like. But before that can even happen, you fall asleep again, you know, and that cycle can repeat itself several times before you finally do. Right now that then you get up, turn it off and head upstairs. So I find that can be a challenge. Is the same too. I mentioned earlier about how things might catch up on the weekend and what I have found not as much lately, I've been a bit better about it. But it can be like on a Sunday where you get up and have breakfast in front of the tv, say. And then again before you've taken your medication, you might doze off and just, you know, you'll wake up at some point. Oh yeah, yeah, I haven't taken my medication. No wonder I fell asleep and. But that you can go through that several times over before you finally do get up and do that. And what I've learned there is to not beat myself up and say, well, you know, if you had have taken your medication straight away, you might have had a more productive day. I just see it as well, look, I've done all these things during the week whatnot and it's not, you know, my body's forcing me to rest, so I just have to accept that and that's fine. I'm used to that now.
[00:46:40] Speaker A: That's good. There are some people who I've met in the past who take weekend breaks from their medication. So they'll take their medication in the week and then on the weekends they just relax and then they just don't take their meds and just let the body do what it will.
[00:46:57] Speaker C: Yeah, I get that, but I'm not as rigid about taking it, but particularly if I've got something on, then yeah, I will take it so that I can, you know, enjoy whatever it is. Yeah. Focus on what I'm doing.
[00:47:11] Speaker B: Yes, I think it's so nice to hear that you give yourself grace over those things. So when something doesn't quite go to plan or your body is extra tired that you're not hard on yourself, that's a really hard place to get to. But it really does make a difference.
[00:47:28] Speaker C: Yes, absolutely. I mean, self acceptance can be challenging in so many ways, but obviously more so when you have a chronic illness. And I think that's really important because if you can't accept what you have and how it impacts upon you, how can you realistically expect other people to make those sort of allowances?
[00:47:58] Speaker B: Yeah, it's so true. Was there any other questions you wanted to ask, Carolee before my red button question?
[00:48:07] Speaker A: If there was one important takeaway you'd like people to take from your podcast story. What would you like it to be?
[00:48:16] Speaker C: Well, pretty simple one, which is basically, be kind to yourself.
[00:48:23] Speaker A: That's nice.
[00:48:25] Speaker B: Very important one.
[00:48:27] Speaker C: Yes, extremely important.
[00:48:29] Speaker B: And do you think you've always been like that, or has it taken you a while to get to that point?
[00:48:35] Speaker C: Early on, there was certain frustrations and, you know, sort of shaking your fist at the cloud, like, yelling at the sky, like, why me? But, no, I don't think it took too long to realize that. Look, it just.
And as much as I don't necessarily like the expression, it is what it is. These are the cards I've been dealt, and I will play them as. As best I can. And I do that just about every day.
[00:49:10] Speaker B: Amazing.
So, time for my favorite question, which is, if you could press a red button and completely get rid of narcolepsy from your life, would you do it? And why?
[00:49:24] Speaker C: Oh, of course. I can't imagine anyone that would say, oh, yeah, that, you know, narcolepsy has been my partner for, you know, 30 years, and I can't imagine life without it. No, I. I can certainly imagine life without it. And.
And I would. Yeah, yeah. Because there are just so many little things. Like.
Like, even the medication works well, but it's not without its side effects. Like, my body, for example, overheats on a regular basis, so that, you know, I can be dressed just in a T shirt in the middle of winter, and people look at you like you're crazy. But then in summer, you know, you.
You get ready for work, you've had a shower, whatever, you get dressed, and you can walk out the door, and within five minutes, you feel like you need a shower again. And it's like those sorts of things, things I could certainly do without. Like, summer used to be my favorite season. I remember as a child spending lots of time at the beach, and now it's like, bring on autumn and winter. I just can't wait, you know? So I would struggle to think of any good reason as to why someone would want to keep it around. So, yeah, if it was as simple as pressing a button and, yeah, boom, yeah, of course I would do that. But I don't. You know, by the same token, I'm not sitting around every day desperately praying for that red button to appear, because I know. I know that's not going to happen.
[00:51:02] Speaker B: You might be surprised as well. I thought that everyone would give that answer, but actually, we've had a real mixture of answers from people.
[00:51:10] Speaker C: Well, yeah, I guess different people say it differently. And look, the one thing I would say. Well, one of many things, I never sure of something to say, but I have met through the community many wonderful people. So I guess I would say if it meant giving up knowing those people. Well, no, then my answer might be different.
[00:51:33] Speaker D: Yeah, interesting.
[00:51:36] Speaker C: I can add two more to the list now.
[00:51:38] Speaker B: Yeah, go on.
[00:51:39] Speaker C: Yes. Well, Curly and Liz.
[00:51:46] Speaker B: I think that makes such a big difference, and it really has made a difference for me doing this podcast with Caralee and meeting so many people, because before that, which was just a few months ago, I rarely spoke to anyone with narcolepsy. So I just felt so isolated all the time.
[00:52:03] Speaker C: Yeah.
[00:52:04] Speaker B: So I was just saying, I think for me doing the podcast, it's made such a big difference to my mental health, but also just not feeling alone with narcolepsy anymore because it's just completely normalizing it for me because all the time I'm hearing people's stories and experiences that I can very much relate to. And so it just kind of reinforces that actually we are all trying our best. Yes, A really nice thing.
[00:52:31] Speaker C: Yeah. I think to that end, it's important to realize that you trying your best, your best might be different to what my best is, you know, and that's fine. Another thing that had a great impact on my life, there's a poem eta, and I won't recite the whole thing here because it's a little bit long, but I would encourage people to read that because I think that's something that really can benefit a lot of people, not just people with chronic illnesses.
[00:53:01] Speaker A: So everyone check out the poem. Di Narata.
[00:53:05] Speaker C: Yes.
[00:53:07] Speaker B: Do you have a favorite line from it, Glenn?
[00:53:09] Speaker C: Yes, I'll just pull that up. Well, it's not all that long. It's go placidly amid the noise and the haste, and remember what peace there may be in silence as far as possible without surrender. Be on good terms with all persons. Speak your truth quietly and clearly, and listen to others, even to the dull and the ignorant. They too have their story.
Avoid loud and aggressive persons. They are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter. For always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble. It is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is. Many persons strive for high ideals, and everywhere life is full of heroism. Be yourself especially. Do not feign affection, neither be cynical about love. For in the face of all aridity and disenchantment, it is as perennial as the grass. Take only the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness beyond a wholesome discipline. Be gentle with yourself. You are a child of the universe, no less than the trees and the stars. You have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore, be at peace with God, whatever you conceive him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
[00:55:17] Speaker A: Oh, that's nice.
[00:55:18] Speaker C: Yeah, Friend shared with me and it just resonated so much.
[00:55:24] Speaker A: Thank you for sharing that. That was nice.
[00:55:27] Speaker C: You've always lived in London?
[00:55:29] Speaker A: Well, I was born in Jamaica and I lived there till I was seven, then I came here. But I have some friends in Australia. In the Gold Coast. Yeah, in Sydney and in Melbourne.
[00:55:42] Speaker C: Okay. Yeah, yeah. And how do you know Iris?
[00:55:46] Speaker A: Oh, Julie introduced us when she traveled from Angola to London. Julie contacted me and said that she had a friend that was coming to London if I could look out for her and it was covered time.
[00:55:58] Speaker C: Oh, yeah.
[00:55:59] Speaker A: That's how I got introduced to Iris.
[00:56:01] Speaker C: Cool.
[00:56:02] Speaker A: She's a little fireball. She is.
[00:56:05] Speaker C: Yes, definitely. Well, I'm lucky. I can go back and have a nap after this, I think.
[00:56:11] Speaker A: Yeah, that's nice.
[00:56:12] Speaker D: Yes.
[00:56:13] Speaker A: When do you start work? Today?
[00:56:15] Speaker C: I don't.
[00:56:15] Speaker A: Oh, Monday I have a day off.
[00:56:18] Speaker C: Yes.
[00:56:19] Speaker A: Yeah.
[00:56:19] Speaker C: Yes, I rostered day off.
[00:56:21] Speaker A: Oh, that's good.
[00:56:22] Speaker C: Yeah. Yeah. So then it will only be because I work two Saturdays in four, and then after that I take my roster day off so that I still get it two day weekend. So I was off yesterday and yeah, I do have plenty of things to do, but that's okay. They don't have to be done by 8am, so. Yeah.
[00:56:46] Speaker A: Well, thank you, Glenn, for coming on and talking to us at Narcolepsy Navigators. It was wonderful speaking to you and hearing your story and the nuggets of wisdom that you shared with us, especially about the stress and the two minute rule. I'm gonna try to implement those into my life.
[00:57:03] Speaker C: Very good.
[00:57:04] Speaker A: I really need help with my stress levels. It's really bad.
So, yeah, I'm going to try to implement those things. Thank you very much.
[00:57:16] Speaker C: No, thank you for having me. It was a pleasure.
[00:57:19] Speaker A: You're welcome.
[00:57:21] Speaker B: And happy napping, everyone.
[00:57:23] Speaker A: Happy napping.
Thank you.
[00:57:26] Speaker C: Bye, Graham.
[00:57:27] Speaker A: Bye. 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.
