S3E7 Hustling with Narcolepsy: Hugh’s Freelance Path

What if managing a condition could open new doors and redefine your career path? Meet Hugh, a talented video technologist from Plymouth, UK who has navigated the unpredictable waters of narcolepsy while making waves in the live entertainment industry. From working on big rock concerts to contributing to cutting-edge virtual productions like “The Mandalorian,” Hugh shares his unique insights into balancing a demanding career with the challenges of a condition that began during his university years. Join us as we explore how his journey has led him to embrace self-employment, offering the flexibility he needs to manage his symptoms while pursuing his passion for entertainment and technology.

You'll learn how community support plays a vital role in living with narcolepsy, and the hurdles one might face due to medication restrictions across different regions. With candid discussions around symptoms like sleep paralysis and vivid hypnagogic hallucinations, Hugh opens up about the emotional and practical realities of living with this condition. Discover how he has adjusted his life and career, the importance of accommodating work environments, and the ways in which cultural perceptions of narcolepsy can influence opportunities in unexpected ways.

Throughout this episode, we also touch upon the significance of managing narcolepsy symptoms without medication, the impact of new treatments like Wackix, and the role of naps in maintaining productivity. Hugh's reflections extend to gender-specific challenges and the need for more research on hormonal changes affecting those with narcolepsy. This conversation is not just about living with a condition; it's a testament to resilience, adaptability, and the power of advocacy, offering invaluable insights for anyone affected by or interested in narcolepsy.

Chapters

(00:13) Narcolepsy Navigators Intro
(11:12) Living With Narcolepsy
(24:10) Navigating Life With Narcolepsy
(28:26) Empowering Narcolepsy Advocacy Through Self-Employment
(35:59) Managing Narcolepsy Symptoms Without Medication
(40:38) Navigating Narcolepsy and Gender Roles

Transcript

00:13 - Kerly (Host)

Hello, welcome. You're listening to Season 3 of Narcolepsy Navigators, brought to you by Naps for Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. I'm Kerly Bwoga, the founder of Naps for Life CIC, and welcome to Narcolepsy Navigators. 

00:53 - Liz (Co-host)

I am Kerly, your host, and I'm Liz, your co-host, and we both have narcolepsy type 1. 

01:00 - Kerly (Host)

And today we're here with Hugh. He's from the UK and the topic for today is self-employment and hard work. Welcome to his story. Hi Hugh, how are you doing? 

01:11 - Hugh (Guest)

I'm very good thanks. 

01:14 - Kerly (Host)

And how has your week been, my week's? 

01:15 - Hugh (Guest)

been okay. Actually, it's all the better for having been a bank holiday week and having not to work on the bank holiday, but other than that, it's all good. The sun is out and that must be a bonus, given the simply appalling weather we've had this year. 

01:29 - Kerly (Host)

That's so true. I began to think that we weren't going to have a spring at all. 

01:34 - Hugh (Guest)

Yeah, I don't know. I feel the weather and gray, overcast skies and lots of rain. It gets me down and I'm always happier when the sun's out and not too hot. 

01:47 - Liz (Co-host)

So hot that we fall asleep. 

01:49 - Hugh (Guest)

Indeed, yeah, but early twenties, and that's golden. Occasionally you work abroad, and even in central Europe the summers can get 35, 36 degrees centigrade and you just think that's rubbish. I'm not happy with that. 

02:04 - Liz (Co-host)

Yeah, I agree. And how is your week, Haralee? 

02:09 - Kerly (Host)

It was okay. Yeah, it's gone really quick. Actually, it ended quite quickly. I've been doing assessments for hairdressing so I got another assessment out of the way, which is great. I finished the wig and I used the wig for the assessment to cut and it turned out into a nice cut. I had one of the teenagers put on the wig and they were like, yeah, this is my Nicki Minaj era, or whatever. And so they were happy and they were saying that yeah, they would buy it. 

02:38 - Liz (Co-host)

Nice, well done. 

02:39 - Kerly (Host)

That was nice. Yeah, it's always good to have approval from the youngsters. 

02:46 - Hugh (Guest)

The Gen was nice. 

02:46 - Liz (Co-host)

Yeah, it's always good to have approval from the youngsters the gen z's are happy with, indeed. And how's? 

02:49 - Kerly (Host)

the way kicks going. I'm not sure if it's working or not, because when I'm not at college I'm still sleeping and taking all my naps, like three, four naps in a day. But when I've been at college the last two weeks I didn't sleep in the class but we had practical, so I don't know if that's why I didn't sleep in the class. 

03:19

A true test would have been a theory class but, I didn't sleep in the two practical classes, but one of the practical classes was quite short, but then again, now I think about it, I did feel really sleepy. I probably shouldn't have ate lunch. And then I ate lunch, and then I went back to finish the cart and I chopped four inches off session of chops. Oh no, yeah. So luckily that wasn't a real person. 

03:43 - Hugh (Guest)

I mean, I've been taking it for nine months now and it's a very different drug to anything that I've taken before. So I've taken, for most things, modafinil, methylphenidate, dexamphetamines, sodium oxybate, and this feels different, certainly, to methylphenidate and dexamphetamine. I always felt that with dexamphetamine I used to have a transport workflow because when I was working in London and living in Hamel I'd basically pop my tablets just before I'd leap on the train and then snooze, because the first thing it would make me do is feel really sleepy and I'd snooze for about half an hour, get a leap off and feel terrible. I am alive, I am awake, and it's not a subtle drug. I'm definitely buzzing. It has such a short half-life that it actually works before you have to take some more. The whack just doesn't feel like that. It's a lot more subtle at the start as I get far fewer side effects from it. 

04:39

But sometimes I wonder whether it's working or not and I guess that from the cataplexy point of view it works quite nicely. I don't get cataplexy like I used to. I still get a bit of a twinge. It often surprises me, for instance, when I take my son to the cinema. I have no problem staying awake in the cinema and usually there's no way I can make through a long movie, even on deck seats, I'd have trouble staying awake. I went to a theatre show the other day and I stayed awake through that and I'd had lunch and had dinner, I'd had a beer or two and I'm still awake. So I guess it does work. 

05:11 - Kerly (Host)

That would be a good test for me. I'll go to the theatre. Maybe that's it Because I was thinking about that this morning. I'm thinking maybe the reason why I can't be sure that I feel the difference is because all the drugs have been and have been like speed, so I'm used to having that real rush like I feel a massive difference when it's kicked in. I know it's kicked in, and when it's not there, I know it's not there. Like the difference. 

05:38

It's so dramatic, and so I was thinking maybe because I've been on those drugs since I was 18, and when they took me off it was only three years ago, and now I've been put on awake. Maybe that's why my body's what is this? It can't feel that like immediate buzz. Oh, this is working. It doesn't feel like that. 

05:58 - Hugh (Guest)

Yeah, I think every single film I've been to see I've managed to stay awake, and even some reasonably long films, and that's made me quite pleased because I've then been able to go to sleep. I get very disruptive sleep, but I often found that dexamphetamine would make that a bit worse. So I don't have that anymore and sometimes I like to take that. I can do that on Wackix if I want to, and I don't find that on dexamphetamine. There's no way I can take a nap on that Once I've taken a dose. Then, other than the original sneeze, I'm raring to go, but it feels a bit unnatural. I've just got used to it over taking it for many years. 

06:38 - Kerly (Host)

I'm only eight weeks in, yeah. 

06:40 - Hugh (Guest)

And it certainly takes time to ramp up the full working sort of thing really, and I think it's successful for me or at least partly successful, I think and certainly the most pleasant drug of anything that I've taken so far to treat narcolepsy, whether it's cataplexy or excessive daytime sleepiness syndrome. 

07:02 - Kerly (Host)

I feel like if I stopped taking this, I wouldn't feel like I needed to kill someone to get hold of it. That's how I felt on methamphetamine and the others. 

07:14 - Hugh (Guest)

Yeah, I'd get intense withdrawal and I can only describe it as oh and I gave up smoking. It's that kind of feeling that withdrawal you get from giving up smoking. If I was working during the week, I would see at the weekends. Then I would try and have a drug holiday at the weekend and I'd be absolutely useless for probably two days and the withdrawal would be just so intense. I'd be so moody and grumpy. I didn't really like the feeling of dexamfetamin or taking it. I respected what it did and it certainly allowed me to work in situations that I simply wouldn't have been able to work in if I'd not been taking it. Yeah, the withdrawal was one of the really unpleasant things about it, and when your kid's telling you that you're pretty grumpy when you're on a drug holiday, you've got to listen to and go, that's not so cool. 

08:06 - Liz (Co-host)

I'm happy not to be taking it yeah, it's crazy the different side effects for the different medications, because I used to take metaphenil and in a way I missed the buzz of metaphenil because it really would get me through the day, but there were so many side effects. I was quite wired, like I'd get a lot of headaches and stomach aches and I was always hungry and then I'd have a massive crash at the end of the day. So wake-ix is a lot more subtle for me as well. But same as you, hugh, sometimes I can't really work out if it's actually working or not, because it is so subtle, but I'm awake, actually working or not, because it is so subtle, but I'm awake but I'm not feeling like all those side effects. So is it really? 

08:48 - Hugh (Guest)

working, but I guess it must be. Yeah, you're absolutely right. I took modafinil when it first came out and I think I probably must have been one of the first patients to be prescribed. I took it for a couple of years but it was pretty disappointing from the point of view of keeping me up. I found that it just made me really pretty angry and nasty whilst I was on it and a bit shouty. That's not the guy I am really in real life. I get really ratty on it. I used to take it out on my flatmates, which wasn't fair on them. After one outburst I was spectacularly grumpy. I just thought that's it. I can't take this anymore. This is not good. Went to see the specialist and said can I have something else please? 

09:27 - Liz (Co-host)

Yeah, it can really affect mood, definitely. What I found with Wakingz the other day, though, is I actually couldn't nap, and I was meant to join Kerly for a podcast in the evening, but I couldn't nap all day, even when I was meant to have my planned nap at work and then after work and then after dinner, and I kept trying to nap because I felt so groggy, but I just couldn't do it, and it's so odd. 

09:50

I wonder that's from the way kicks as well, or if that's just my brain some days is like nope, you're not napping today, even though you need it. 

10:00 - Hugh (Guest)

That's, I think, at the moment. I did wonder about having a nap before the podcast and my brain was saying no, you're good for this. And even having had a reasonably substantial dinner, my brain's still going no, you're good, you don't need the nap, you're not sleepy. 

10:13 - Liz (Co-host)

I'm glad it's not just me that happens too, because it feels so like it shouldn't happen, because we all have narcolepsy. Like surely we can just nap whenever we want. But then sometimes your brain just tricks you and it's like, nope, it's not happening today. So, liz, how was your week? My week was good, yeah. Also very happy, though, it was bank holiday Monday, so I only had to work three days this week, which is nice. But yeah, I had that weird thing on Tuesday where I couldn't nap and felt very groggy all day, but the rest of the week has been good. 

10:45

I have sometimes been struggling to nap at lunch times, which means my brain works a bit slower in the afternoons at work which is a bit frustrating, but I've managed to get through and I'm also enjoying the lighter evenings because I feel like that just fills me with so much joy and energy and I just love feeling that warmth on my skin. It makes me feel much more human. So, yeah, it's been quite a good week, I'd say. 

11:12 - Kerly (Host)

So, hugh, tell us who you are, where you're residing, your age, if you feel comfortable, and what do you do for a living. 

11:20 - Hugh (Guest)

I'm Hugh. I'm 53. I live in Plymouth. I describe myself as a video technologist by profession and what I mean by that is most of my life I've worked in live entertainment of some description that's theatre, rock and roll, pop, corporate events and I've just drifted into the area of video through lighting and sound and I basically do the video side of rock concerts, pop acts and things like that, whether that's system design, operating video, doing multi-camera, directing a load of different things that I do. My day job at the moment is that I'm a product manager for a company that makes video processing for the sorts of screens that you see at rock concerts the artists or to the side of the artists and increasingly used in what's called virtual production. Shows like the Mandalorian, for example, use great big LED screens behind the actors that. They can put a virtual environment, a virtual set, if you like behind the actors. They can do all sorts of clever things with that. They can put a virtual environment, a virtual set, if you like, behind the actors. They can do all sorts of clever things with that. They can change locations at a mouse click and change where the sun is at a mouse click. A company that I work for designs, the processing that makes all that sort of stuff happen. That's what I'm doing. 

12:40

How I got there is narcolepsy at its core really, because without narcolepsy I wouldn't be doing what I'm doing. How I got there is narcolepsy at its core really, because without narcolepsy I wouldn't be doing what I'm doing. So from that point of view, that is the silver lining. It has forced me to make some life choices that have got me here and, as you both know, it's hard. It's hard working with narcolepsy for all sorts of reasons and I was very lucky I didn't have narcolepsy as a teenager. I started to get the symptoms of narcolepsy when I was in university and that was the fractured sleep. I started drinking lots of coffee and smoking lots of cigarettes to keep me awake and then by the age of sort of 22, 23, I started to get hypnagogic hallucinations and sleep paralysis and that was really bad. I had really bad symptoms, sleep paralysis, really bad hypnagogic hallucinations and sleep paralysis, and that was really bad. I had really bad symptoms, sleep paralysis, really bad hypnagogic hallucinations, and I talked to a psychiatrist about that. He had no idea what I was on about. 

13:33 - Kerly (Host)

Did he think it was when you talked to him? 

13:35 - Hugh (Guest)

He'd had no answers for me, to be honest, and so I actually dropped out of university. So I only did a couple of years at university and I went to drama school. I went to the Royal West College of Music and Drama and trained as a theatre stage manager. I was much more drawn to doing lighting and sound, and much better at that. Those days the only way that most people of my kind of fright got a taste of technical theatre or a formal training in technical theatre was to do a course in stage management, and that's what I did, and so I left the Barnwood School in 1992 and I got diagnosed with narcolepsy in 1998. And somewhere along the lines my symptoms just got worse and worse and my hypnagogic hallucinations were terrible. I used to have like multiple episodes a night. They really freaked me out, they were really bad, and one day I just thought I've really had enough of this. 

14:29 - Kerly (Host)

Can I ask you, do you remember any of them? 

14:33 - Hugh (Guest)

Yeah, I remember them very clearly, could you? 

14:35 - Kerly (Host)

share with the listeners, for those who don't know what they are. 

14:39 - Hugh (Guest)

Yeah, the hypnagogic hallucinations are the sort of ones that I've experienced. They're different themes but the hallucinations are, you know, complete sensory kind of hallucinations. So the visual you can hear, you can feel, you can smell these hallucinations, so they're very vivid and very real and very frightening. And the sort of things that I'd have are that there's a presence in your room and it's lurking in the corner and you can feel the benevolence radiating from this thing like a ghost, I guess, a specter or something in the corner of the room. So you'd have those kind of apparitions. A common one was you'd have this sort of thing on your chest. There's a famous picture by Henry F fuseli called the nightmare, which you may be familiar with, and that has a maiden with this kind of normal type creature sat on a woman's chest and and it's that kind of feeling and you get that and you get those weirder and more freaky ones, the out-of-body experiences and much more ghostly, apparition-y kind of body experiences and much more ghostly, aphorism-y kind of nasty experiences and, yeah, just horrible and very frightening For me. 

15:52

I'd wake up and my body would still be paralyzed and it would take me a while I'd have to hold my head up, so my head would be straight and as my body slowly unparalyzed, I'd be able to like sit up. It was pretty awful. And I'd be able to like sit up. It was pretty awful. No-transcript. I have to say, if you're dating and stuff like that, it's not a big one for the bedroom, as it were, especially when you've been seeing someone for not a very long time and you've got things climbing through their window and you're totally freaked out and they're totally freaked out because you're totally freaked out. It's that kind of WTF. What the hell's going on? Who have I ended up with? Who is this madman? And so you haven't seen what I've seen. 

16:36

Awful, because I worked in theater. I was used to doing long days and working late nights. I drank a lot of coffee, which I could get free from the theater bar. I had a constant stream of coffee and I smoked a hell of a lot. That kept me awake. I thought genuinely that it wasn't anything weird. It was just feeling a bit depressed. I hadn't slept very well, which I probably hadn't, and feeling a bit depressed. I hadn't slept very well, which I probably hadn't, and I was just working long hours. 

16:59

It was the hypnagogic hallucinations and sleep paralysis that really drove me to get a diagnosis, and I was very lucky to be living in Oxford and Oxford's a really good place. If you've got something like narcolepsy or some such thing, it's a really good place to be ill. And when I was living there, a couple of the real top experts in narcolepsy were working at the hospitals in Oxford and were associated with the university. So it just happened that the locum GP who saw me and I said I don't know what this is, I'm not depressed, I'm not mad, I just have these things at night, she said I've no idea what you've got, but I know someone who might, someone who I went to the university with here in Oxford. He's very bright and he's a psychiatrist. Because I'm going to send him to see you, you can go and see him. But I saw him and I spoke to him about it. Okay, I'm not entirely sure what you have, but my professor wanted to come on to the held here. 

17:58 - Kerly (Host)

I like that yeah. 

18:00 - Hugh (Guest)

So I went to see a chap called Professor Gregory Storrs, who specialized in children's narcolepsy, and I sat down and explained what was going on for me. He actually had his registrar sat with him and he said I know exactly what you've got and you have this hypnagogic hallucinations. And he gave me the whole spiel about hypnagogic hallucinations, what they were, their cultural significance and everything else like that. And I said what do you do about it? And he said we can take some antidepressants. 

18:26

I thought really I'd had suffered depression when I was at university and through my young adult life, and so I'd taken antidepressants before and they sucked. I really didn't want to take any more, so I thought I'd rather just suck the sleep paralysis and hypnagogic hallucinations. Take that on the chin and accept that this is something that happened to me, but at the time I was beginning to start to get a bit more problems with VDS and feeling tired at work and falling asleep at work. So so I managed to get sent for sleep studies. That's when I got diagnosed with narcolepsy when I was about 28. 

19:01

And I was actually on tour as a sound operator for a big musical and obviously being diagnosed with narcolepsy when you're on tour doesn't go down with the company that I worked for. 

19:12

They're a bit mean to me when I was first diagnosed and I thought this sucks. 

19:16

Maybe I should just have a pause and think about what I'm going to do with my life, given that now I know what's been going on in my life and why I've been really tired, why I've been falling asleep, why I've had the sleep paralysis and hypnagogic hallucinations and I was starting to get cataplexy as well Cataplexy is really weird and why this is all happening to me. 

19:39

The doctor signed me off a bit, so I thought I'd go and investigate narcolepsy and how it worked for me and have a bit of time out, think about what I was going to do next, and I was very fortunate that when I was living in Oxford, I worked for a university theater there as a theater technician. The theater that I worked in used to have Oxford University students in for quite a lot of time about 20 weeks. I got pretty friendly with a lot of the students there. One of my students used to work for me in the holidays. Sometimes he was really good at lighting and we'd stay friends. When he graduated he ended up working for a company that's made the top notch lighting consoles in the world the lighting consoles that did the Rolling Stones and things like that, but the little kind of startup. 

20:26

They employed like 12 people but they made these amazing lighting consoles and they had a huge hole in their organization. He put me up for a job there doing technical support and training and said I think you'd be a great fit here. I got the job and it turned out to be one of the best things that's ever happened to me. They knew I went into that. They said I have narcolepsy and they said, yeah, so what? And that was that he has this. We've all got stuff wrong with us, don't worry about it. And that was. 

20:55

It was brilliant to have that acceptance from people because in my little sort of six months or something that I had out I started applying for jobs. I'd always fess up and say I have narcolepsy. Almost to see what these people would say. I can remember one job that I went for. The owners of the company that I was applying to work for I had a sense of human failure. It was really unpleasant to me, to the point I pretty much said I think I'm going to leave now and didn't even get a thank you for coming. I didn't even get my expenses paid or anything. This is not going to work out, is it? They're incredibly rude. 

21:27

But that company got bought by much bigger American company and they were pretty chill with me having narcolepsy it's just the way I roll and I can remember having a full body cataplexy attack. When I was out in Spain doing some training out in San Sebastian, one of the owners of the company phoned my managing director up and said he's just collapsed, do we send him to the hospital? And he just said he does that A couple of minutes, he'll be fine. And he did that. He does that, give him a couple of minutes, he'll be fine. And he did that a few times. You sometimes get one of our customers saying it's the end of the day, he's fallen asleep on the pay show stand. He does that, give him a couple of minutes, it'll be fine. They were really chill about it. All the more amazing that the American Lighting Company that bought us were Texans. Texas is a right-to-work state where you can be fired for a reason and immediately. 

22:18

They weren't known for being particularly nice to employees, but they were pretty decent to me. The narcolepsy was never a problem. 

22:25 - Liz (Co-host)

How come you disclosed your condition in the interviews? Just because I'm curious. I would usually wait until after I've been offered the job, but it's nice to hear different perspectives on that. 

22:37 - Hugh (Guest)

Sometimes I'll wait after an interview and then I'll mention that I had an bankruptcy, but always before I get hired because I want to know how they react. I was approached by a Belgian company to go work for them. They flew me and my partner out to Belgium a few times. The last stop was to have the company medical. I disclosed to their doctor that I had narcolepsy and letters and things from a specialist back home who's a professor of medicine. She ignored what my specialist said and basically dinged me on the fact that I had narcolepsy. I couldn't work at heights or do any of this. I was pretty put out. I said look, if the doctor says if I feel safe to work, then I'm safe to work. That's generally the way it works with me. If I'm happy to do something, then I'm happy to do something. I was really missed to lose a job because the doctor, who was a general practitioner, didn't know enough about my particular illness and wasn't actually even prepared to look at the extensive letter my specialist at the time wrote. 

23:38

I've talked to Hugh about this. I'm aware of this work and I think he's good for this, so I'm glad. If that's the company culture, then I want to know about that. Although it can hurt, turn down for something. Perhaps that's for the best, since it's a company culture, then I know about that. I almost want to see the reaction. 

24:00 - Liz (Co-host)

Yeah, that's a really good point actually, because it's nice to know that true colors up front, so you don't go and then you're like actually they're not going to support me. 

24:10 - Hugh (Guest)

Exactly. And I ended up in another company for three or four years which was and I ended up in another company for three or four years who provided the video equipment and crews for big rock and roll tours and theater shows in the West End and things, and again, the owners of the company just didn't care that I had narcolepsy, just not a problem. My office was attached to the warehouse and it was not uncommon for me In those days. I wasn't taking anything because I hadn't discovered dexamphetamine yet and I'd often be having a nap at my desk and I was near the warehouse and one of the older guys would just go, leave him alone. He's cool, leave him alone, don't you dare. Yeah, that was never a problem. Occasionally people would go say sleepy who or something, and you just give them a hard look and go. Very funny, or some of the other colleagues just go, just don't leave it alone sorry to interrupt you. 

25:07 - Liz (Co-host)

I'm just so curious how did you feel when you were diagnosed narcolepsy, because obviously it was a quite a long period that you're experiencing symptoms and then maybe wasn't the first thing that you saw, when you were experiencing the hallucinations, that it was actually narcolepsy I've heard of narcolepsy and I'd seen what narcolepsy was because I went to a boarding school and my school had a really good music department and we could usually attract really good professional musicians to play at the school. 

25:39 - Hugh (Guest)

And there used to be a chap who used to come and attend all these events, who lived locally with his friend and he had narcolepsy and, bless him, swept through every show, every concert and what's his deal? And and someone, oh, okay. So when it was suggested I had an idea that I probably had it before I was diagnosed, as a lot of us do. It was a release because it did confirm to me that probably I didn't spend vast amounts of time looking things up on the internet. I guess my instincts told me that I probably had it. 

26:14

Also, it opens a lot of questions and you start to question your whole life and you have a light bulb. But that's why I was feeling this is why this happened to me, and suddenly bits of the jigsaw in your life start to make sense as you put the pieces together and go ah, okay, I get why I was doing this and why I felt like that. And then part of you goes oh fuck, how am I going to cope with this? How am I going to deal with this? Now I know this. How am I going to move forward? And that's why I think it's probably quite wise. I took a few months out after I'd been diagnosed and, although I had some work, I thought no, I'm just going back to what I did before, and it really has made me sick a little bit, and I probably need to sit down and think about how this is actually going to work for me going forward. 

27:03 - Kerly (Host)

I was going to say would you recommend that to other people that after they're diagnosed they should take some time to sit with it. 

27:09 - Hugh (Guest)

Yeah, if you have to. I'm not advocating people just go on the dole or something, but yeah, I think sometimes you're taking some time out possibly is a good thing to do and perhaps getting some support, some therapy or something like that up you through those first few months, because if you're like me, you go. Okay, I get it. I've got narcolepsy, but in some respects that opens more questions and solves and it certainly knocked my confidence for a bit and certainly my brain's. Good, I'm reasonably smart guy but I need to see how I can make my symptoms work in the world of work and in my personal life going forwards. How does that work? And it took me a while to do the research, get the confidence back and actually have to find someone who's prepared to employ me, for whom me having naps at work just wasn't a problem. 

28:06 - Liz (Co-host)

And what kind of reflections or conclusions did you come to during that period of time where you gave yourself time to think these things through? 

28:17 - Hugh (Guest)

during that period of time where you gave yourself time to think these things through. I did a lot of research. I had a computer at home. I was on the internet we're talking 97, 98. So the internet was pretty rudimentary. 

28:26

But the most important thing for me was that I found Narcolepsy UK, or UKAN as it was called then, and in the magazine they would publish like a list of people who were up for being regional reps. And there was a woman who was about my age, maybe a little bit younger than me, who lived in Oxford, and so I got to meet the first person with narcolepsy and that was really important for me to meet someone else who just understood and knew. And so I met up with her and we just had a really good chat and lots of emails about how it worked for her, because she'd had it for a bit longer than I had and she'd got used to university and whatever and got a good job and she managed that she had medication for it and that was a big thing for me. I used to be a director and trustee of Narcolepsy UK for many years and I'd certainly recommend going to some of the events that they set up, whether it's a conference or the local meetups, because meeting other people in narcolepsy is a wonderful thing and it makes you feel that you're not on your own and you're not struggling on your own Because a lot of the time your specialist, their time is precious and they don't get to spend an awful lot of time with you, depending on the relationship that you have with specialists and what hospital you go to and all that kind of stuff, what kind of doctor they are, whether you have access to them. 

29:54

They don't have narcolepsy, so they don't know necessarily. They only have what their patients tell them and that's a very different experience to actually talking to someone who's been there and done that and live with it and work with it or not work with it. Everyone's journey is valid and something to learn from Meeting someone. The first time with narcolepsy was just amazing. When I was at the lighting company that I worked for, our American parent company had sent over a sales guy to work for us in the UK from the US and his mother had narcolepsy. He'd just chuckle and just go. He just reminded me of my mom. One of my cataplexy triggers is smart or rude jokes or whatever. I'm a filthy public school boy. I have a school boy sense of humor really, but school boy gags and things made me I just have to think about them when I start getting cataplexy and he'd just look at me and see my face twitch and go look at you knocking out. 

30:47

Look at you you remind me just of my mum. It was really nice to hear him and his fondness for his mom and the fact that he'd grown up with, I think, 11 other siblings who had narcolepsy and that's how they looked after her and she was a nurse and she had a full-time job. But that's when when he described them, as when they were watching the funnies on the TV, the cartoons or whatever, and she'd start laughing they'd have to rescue her cigarettes before she'd have a catapult attack, burn the sofa with a cigarette. 

31:19 - Liz (Co-host)

Gosh, that's funny. And you see, your topic is self-employment. 

31:26 - Hugh (Guest)

Self-employment. Yes, I've had various bits of self-employment and I started off when I left drama school being self-employed. Although I have a full-time job, I still do self-employed activity, sort of side hustle. Until the pandemic I had almost 10, 12 years of unbroken self-employment. Only the pandemic forced me to take a full-time job for a bit and it's working out. But the company I work for let me off some good behavior and let me do my side hustle from time to time. As I said, I used to do video technology type stuff for corporate events, for rock bands and pop stars and do some multi-camera directing. So I did that for about 10, 12 years. 

32:12 - Liz (Co-host)

How do you manage the work-life balance and managing narcolepsy at the same time? 

32:19 - Hugh (Guest)

Oh, a tricky one. One of the nice things about being self-employed, especially if you have a certain amount of notoriety for what you do, is that you can pick and choose what you do, so you can say no to things that you don't want to do. Some of my colleagues would tour the world and do stadium rock bands and stuff like that, which just didn't interest me. I get very bored really, and it's for me, so I always used to enjoy doing things where I'd program things, set them up and just leave or go out for a short amount of time. Do a festival tour, happy with the festival tour, do short arena tours, but never really do any more than that. When you're taking amphetamine, no one gives you a prescription for longer than a month. Anyway, at least they never gave me a dexedex for longer than a month, so I couldn't go out on tour without coming home and getting another dexedex or amphetamine. And then there's certain places that I can't work. So I can't work in the Middle East, because narcotics are just a no-no Even in countries like Dubai or the United Arab Emirates. 

33:23

There's a lot of work for Western techies like myself. Risk of taking narcotics into the UAE is just too great. They're basically illegal unless you have a doctor whose speciality is in narcolepsy in the UAE just too great. They're basically illegal. Unless you have a doctor who specializes in narcolepsy in the UAE who's prepared to prescribe them to you locally and that's very unlikely You're not going to be able to get them there. 

33:44

So there's loads of work in the Middle East for people like me, in Saudi Arabia, qatar, kuwait just too tricky with the drugs and some places like China. Again, I've worked in China but I didn't take my drugs with me and it's lucky that sometimes some of the things I do mean that I can get away without having to take drugs all the time Because I work in the evenings, I'm good in the evenings, so sometimes I'm not having to take drugs to parts of the world where they don't snarl favorably on narcotics. But essentially amphetamines are narcotic and it's tricky to get it through. I've got amphetamines into the United States. I've got them into Russia and Ukraine and many other countries. There are some places where it's really too difficult and I've had to rely on naps to get through. 

34:32 - Liz (Co-host)

And you're obviously a very ambitious person and have achieved a lot in your career. What tips would you give to other people with narcolepsy who also want to achieve things within their profession when it's going to self-employment. 

34:46 - Kerly (Host)

Do you think that is a better? 

34:49 - Hugh (Guest)

I think sometimes self-employment can work, depending on what you're doing. I think I've met a lot of people with narcolepsy who are self-employed because it just suits their lifestyle, it suits the way they work, and sometimes just because they've ended up on the wrong end of the employers and they've just thought you know stuff, this, I want to work for myself, I want to do my own thing, and it can sometimes be a benefit for people. Again, it really depends on what field that you work in and what you're trying to do. But there are lots of things you can do with narcolepsy. If you can have naps, if you're the sort of person who needs to have a nap a few times during the day and you've experienced workplaces where they're not prepared to make a reasonable adjustment, or at least a reasonable adjustment to your particular needs, maybe thinking about that route is a way forward. So I would recommend considering it, especially if you're bemused with your current situation and want to do something worthwhile with your life. You just have to find the right path. 

35:52 - Liz (Co-host)

You just have to find the right path. Do you have any other? 

36:00 - Hugh (Guest)

strategies, apart from medication, to help you manage your symptoms day to day. 

36:02

Naps definitely naps, even if I'm taking Wackix. I've got used to taking naps, they're part of my life. I like sleeping the little bit that I do, as long as I don't have hypnagogic hallucinations or something. I've found that sometimes in the days when I took dexamphetamine, as I've mentioned, it's not a pleasant drug and I don't always like taking it, and if I don't have it I won't take it. I've found that having a nap sometimes allowed me to get through the day, but what I was trying to do in the evening, when I tend to be more alive and more awake anyway, I could get through and do a show in the evening to the bands that I was working for without necessarily having to use medication. And I would just mention that for a year or so I didn't take any medication. Relatively recently, because I got diagnosed with high blood pressure. 

36:51 - Kerly (Host)

Ah, yes. 

36:52 - Hugh (Guest)

If you have high blood pressure, dexys are a no-no. Yeah, they take you off them. 

36:57 - Kerly (Host)

That's happened to me. I almost had a stroke, and so they took me off at cold turkey, which was really rough. 

37:06 - Hugh (Guest)

I went into hospital to go for basically a drugs review to see if I could take Wackix. And because I go to the Royal Brompton the first thing they do when you walk through the door you sit in the clinic and someone walls up. They take your blood pressure, they take your bloods before you do anything, but they check your kidneys and liver function and they put you in an ECG because they're heart and lungs hostile. And my specialist is a sleep apnea expert and my specialist is a sleep apnea expert and my previous was a sleep apnea and they just have a few people that are treating narcolepsy. That tends to mean that I went in to have a WACx review. 

37:43

The first thing they do is they sit you down, check you out, they do observations and my blood pressure was really high and the nurse went. I'm going to leave you for 45 minutes, have a cup of tea, I'll come back and do it again. And then she did me one arm, looked at my blood pressure, then did me on the other arm and then went to fetch one of the specialist registrars who was on duty a very earnest young doctor to come and have a look. And so he did my blood pressure again and was very unhappy and put me down onto the ward, checked me over, listened to my lungs, chest, did everything, looked at all the results and then called my consultants and they said are you out of breath? Do you have trouble going upstairs? Do you have trouble walking? Soundly goes, no, no, I don't have any problems with that. Your blood pressure is really high and we need to do something about it. We need to find out why. 

38:32

And I said so what about the tech service? I said you're going to have to come off, that you can't take that anymore. I'm really sorry and yeah, so it took me a while. I had to work without any help for a bit, and including the sort of rock and roll work that I do, and yeah, that was tough, but naps helped me get through. I think when I was working for a video company sometimes I don't want to have a nap where people can see me because I feel a bit vulnerable people seeing that I'm napping we used to have some executive toilets which were very nice for clients. I used to go and bunk off to the executive toilets and have a nap and sometimes I'd fall off. So somebody in the store next door, so we'd plop. It was like I fell off the loo. 

39:10 - Liz (Co-host)

Okay, I've done that. That's helped me out numerous times. 

39:13 - Hugh (Guest)

You just find a comfy loo, this design just the right way. I put my head back like that. I'm not going to fall this way and 10 minutes, yes, I'm not even around, and sometimes it's in the woods. You get caught out and you fall off. 

39:33 - Liz (Co-host)

I'm always on the lookout for a place I can nap Whenever I go out. I'm like that would be a good spot. That one's not great. That one's too visible. That looks very comfy, yeah. 

39:44 - Hugh (Guest)

At work. Although I work from home now in Plymouth, my office is in London and I have the comfy chair, a very expensive comfy chair, especially bought for my particular requirements of napping. So I can just leave it there, close my eyes and hope that I don't snort. 

40:04 - Liz (Co-host)

Have you achieved more or less than you thought you would after you received your diagnosis of narcolepsy. 

40:12 - Hugh (Guest)

That's a very good question. I think having narcolepsy made me use directions in my career that perhaps wouldn't have been evident if I'd not had. And certainly before I was diagnosed I wasn't sure I did lighting. I was good at lighting, I was good at sound. I didn't know which one of those I preferred doing more than the other. To be honest, I don't know how far I would have gotten neither of those professions. But what's being diagnosed with narcolepsy did is. 

40:42

That gave me the opportunity to have some time out to think about what I was going to do next. And, as I said, I ended up working for this lighting company and the great thing about that lighting company was that I ended up training and supporting and helping some of the biggest lighting designers and production designers, people who design big rock and roll shows in the world. That was a godsend to me from a career perspective because these people knew who I was, what I did, what I could do for them, and then that gave me a career. Basically, and for people who knew me and liked me, having an archaeology just wasn't a problem and even if they thought maybe he's not the touring kind of guy, I'd still get invited to go and set up shows, make the work before they went out on tour. So from that perspective, if I hadn't had an archaeology I wouldn't have got the job in the sliding company, and everything else that I've done subsequent to that has been based on having worked at that company. The first job I got after I was diagnosed. 

41:42 - Liz (Co-host)

Wow, it's like the sliding doors, right. 

41:47 - Hugh (Guest)

Exactly, and you know what could have happened. I don't think too hard about it, really. There are times when I've been doing a video. So I work for a German rock band. They're very big in the German speaking world and they can sell out stadiums, and there's something to be said about doing what I'm doing operating the video or makes all the video behind them work and I'm doing that in front of 60,000 Germans who are losing their shit. 

42:11 - Kerly (Host)

And. 

42:11 - Hugh (Guest)

I'm thinking to myself I love my job. And then I'm thinking, without narcolepsy I wouldn't be doing that, I wouldn't have this experience. And in that sliding doors moment, who knows what would have happened to me if I hadn't had it? Maybe I would have been successful, maybe not, I don't know. But certainly a part of me wants to succeed. 

42:31

I don't want narcolepsy to get in the way and I know for some people that narcolepsy thing will always be an issue with me. They've seen me and they know me professionally and the fact that I have narcolepsy means they'll never employ me, I'll never work. But that's really their problem and not mine. And the people who know me, who employ me, who I work for, they've got to be chill with the fact that that's just the way I roll. 

43:00

And the German bands I work for, the crew on the bands, all the people who I show a tour bus with, they all know I have narcolepsy. And there will always be someone on the crew who, after the show, having had a shower, got on this store bus there with a glass of wine and munching on a post-show sandwich. But suddenly the dexamfetamine would have run out. And when you hit that sort of fifth point with dexamfetamine it just runs out and you fall asleep. I would have hit this point and just with a glass of wine still in my hand and someone would have just gently taken the wine glass out of my hand to stop it dribbling on the floor. 

43:33

A monitor engineer that I work with once said you're the only person who will never get glasses and a moustache and a sharpie put on your face when you fall asleep in the crew room, because everyone else other than you gets a sharpie, moustache and some glasses on. 

43:48 - Kerly (Host)

That's nice that they respect you enough to do that. 

43:52 - Liz (Co-host)

And do you think expectations on you as a man are different from a woman when it comes to managing your narcolepsy, being able to show vulnerabilities around having a health condition? 

44:08 - Hugh (Guest)

I think women have it probably a lot harder than men. Well, certainly they do have a target than men, I think, because a lot of women are going to want to have children and at the point at which you want to have children and have kids, that probably brings a whole level of stuff that goes along with it, and I can't imagine being asked to stop taking your medication and having to look after kids when you have narcolepsy. It must be really tough to have a son and he's great. He's grown up without me having narcolepsy. But I think it's a different challenge when you're having to breastfeed and take kids out to the toddler groups or whatever. That must be really hard. And I think having things like periods and things like that when you have narcolepsy I don't know what that is. I can't experience that. 

44:55 - Kerly (Host)

It's so interesting that you mentioned that, because this year at the Wake Up Narcolepsy Conference, dr Emmanuel talks about this. He was saying that he wasn't happy. He mentioned this to researchers and stuff and they didn't seem to think that it was even worth researching and he was like but there must be a difference between how a woman is when she's not having an opioid and when she is. These are the things that he's trying to push forward for them to research, because it must make a difference. 

45:20 - Hugh (Guest)

there isn't enough research being done about these differences and why, when the body has these hormonal changes, what effect it has when you already have an alcohol in the system exactly and going on from that, how narcolepsy in the system Exactly and going on from that, how narcolepsy would affect women going through perimenopause or the menopause but there's very little research done on that. 

45:45

I think that goes to a whole host of medical issues that often the experiences of women, or indeed the racial and cultural differences, are not really investigated or looked into, as, for example, rooster diagnosis and things like that. How is narcolepsy perceived in different cultures and whether that's a problem with getting a diagnosis. I think a lot of these things aren't really researched as much as they could be, given that there are other illnesses that have the same frequency as narcolepsy that are a lot better known and have a lot more research and funding behind trying to find cures for I just think sometimes we're considered just sleepy, and that's the thing. I think that there are more profound implications for studying how the sleep-wake mechanisms of the brain really actually work. I think studying people with narcolepsy is the gateway to doing that. 

46:35 - Kerly (Host)

Yeah, I totally agree. 

46:37 - Liz (Co-host)

I think it can help everyone if research into sleep is invaluable, because everyone needs sleep. If we benefit from that because they put more money into research for us as well, then everyone's happy. 

46:49 - Hugh (Guest)

I once heard one of the great narcolepsy specialists. When I was diagnosed he had done research that suggested the average medical student received 30 minutes worth of training in sleep medicine, which is given that the average human spends eight hours asleep. It's just amazing. And that even urologists and their specialist training have a fairly limited amount of training in sleep, which goes to show that if GPs and neurologists don't have much training in it, then there's no wonder that it takes a lot of people a long time to be diagnosed. And actually what I'm lucky in that whilst I'd had narcolepsy for a while before I was diagnosed, when I actually really pushed to get a diagnosis, I actually got one pretty quickly, whereas it can take people haggling with their GP to get them referred, and even when they do get referred, they don't always get referred to the right place. 

47:44 - Liz (Co-host)

Yeah, so true. 

47:45 - Kerly (Host)

I was going to say for all the doctors listening out there we want to pressure you to do more research because we're already in 2024. We have to get to a point in life where people value sleep as much as they value food and exercise. You've got to think of it on that level, just like how you would say to someone you must drink your water every day. You have to think of sleep as that important as food, as exercise and water. Sleep has to come up a level and has to be seen as the same and I think once they start valuing it at that level, they will want to teach it more, they will want to give more to it, because it is as valuable as that essential part of life itself and and people need to sleep. 

48:33 - Hugh (Guest)

They need enough sleep. I think there are so many ailments that people commonly suffer from that can have their roots at not getting a decent amount of sleep, and I think it's really pretty poor that medical students don't get an awful lot of sleep medicine training Because really, when you think about it, an experienced general practitioner, when delivered with someone who presents these symptoms excessive sleepiness, cataplexy, feet paralysis and hypnagogic hallucinations it's like a smoking gun. I suppose people have different severities of symptoms. For your classic narcolepsy, those telltale signs, even if it was just excessive tiredness, if you weren't presenting with any kind of depression or whatever, you want to go get them checked out for sleep apnea and then if they've got the added complexity of the cataplex, nothing else has cataplexed. Yeah, it's a slam dunk. 

49:31 - Kerly (Host)

It's so funny you say that because it's a slam dunk to the point where it's almost shocking that it's on the diagnosed. 

49:41 - Hugh (Guest)

Yeah, I think there are many people who haven't been diagnosed, who've been thinking what the hell is going on with my life and I guess it must be quite frightening and not really knowing or not really understanding what these symptoms are and where they come from. Because cataplexy is just a weird one. There are other illnesses where you get the excessive daytime sleepiness Cataplexy, that's just weird and people get sleep paralysis, hypnagogic hallucinations, without having to have knock-and-out sleep. 

50:12 - Liz (Co-host)

But cataplexy, that's just weird and there is nothing larger I think now might be your time for my red button question, but I have a feeling that I know what you're gonna say. I'm gonna ask it anyway by the way okay. So if you could press a red button and completely get rid of narcolepsy from your life and never have experienced it, would you do it, and why? 

50:37 - Hugh (Guest)

Yes, I probably would. 

50:39 - Liz (Co-host)

That surprised me. 

50:40 - Hugh (Guest)

I know it's gotten me to where I am and I've made the choices that I've made and I have been reasonably successful in my career, even notwithstanding the fact that I have narcolepsy. But it's not a barrel of laughs. It's not fun. It hasn't made my life always very easy and whilst I can live with this, I can put up with it. It's not a fun condition and Pat would probably not have it. 

51:07 - Liz (Co-host)

I think we can all share that sentiment, at least on some days anyway. 

51:11 - Hugh (Guest)

The broken sleep. I've lived with it for so long now. Just not having a full night's sleep Decades. I think it must be so blissful to be able to sleep. I remember when I was a kid being able to go to bed at 11 o'clock and wake up at seven and having slept the night through. I've not done that for so long. The last time I actually got anything like that, I was on a trial for sodium oxybate, because you have to take one dose wake yourself up. It was almost impossible. 

51:41

I'd take another dose and then it knocked you out for a few hours. That's the nearest I've got to having a decent night's sleep. From that point of view, I could cope with all the other symptoms. It's just not sleeping. That really gets to me. 

51:55 - Kerly (Host)

Thank you for coming on and sharing your story. It was really good to have you on. 

52:00 - Hugh (Guest)

Thank you for inviting me. 

52:02 - Kerly (Host)

It was a pleasure. 

52:03 - Liz (Co-host)

Likewise, To end it, I always like to say happy napping everyone. 

52:10 - Kerly (Host)

Happy napping. Everyone, cheers, cheers, bye, bye, thanks, everyone Happy napping. 

52:12 - Liz (Co-host)

Everyone Cheers, Cheers. 

52:13 - Hugh (Guest)

Bye-bye. 

52:14 - Liz (Co-host)

Thanks, Hugh Bye. 

52:21 - Kerly (Host)

Narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life CIC, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website wwwnapsforlifecom. If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email us at narcolepsynavigators at gmailcom. You can also support us by donating at the website. Happy napping everyone.