S3E5 Lisa's Story: From Falling Asleep at Work to Entrepreneur

In this heartfelt episode of Narcolepsy Navigators, Kerly sits down with Lisa Isaac, an inspiring woman living with narcolepsy type 1 and cataplexy in New Zealand. From her days as a sporty teenager needing frequent naps, to being misdiagnosed with epilepsy, Lisa shares her winding journey to an accurate diagnosis — and how she finally found community and support.

Lisa opens up about:

• Her move from the UK to New Zealand
• Being dismissed by doctors and labeled "lazy"
• Her struggle with cataplexy triggered by laughter
• The challenges of living in a country with few specialists
• How creativity became her unexpected lifeline

Lisa’s story is a testament to resilience, advocacy, and the power of finding community. Her laughter is infectious, her honesty is refreshing, and her advice for others is invaluable.

Chapters

• 5:09 The first signs and misdiagnosis
• 8:21 Cataplexy’s impact on daily life
• 12:23 Self-diagnosis and finding the right doctor
• 17:09 Living with narcolepsy in New Zealand
• 22:34 Family support and finding her creative passion
• 31:49 Challenges with vaccinations and autoimmune conditions
• 44:27 Would she press the red button?

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 Keri Boger, the founder of Naps for
Life CIC, and welcome to Narcolepsy Navigators. I am Kirli, your host. I have narcolepsy
type 1 and today I'm here with lovely Lisa Isaac, who is in New Zealand, and welcome to her
story. Hi, lisa, how are you doing?

01:02 - Lisa (Guest)
Oh, I'm good, kirl you. Yeah, all good. Just got up from the start of the day on a Sunday
morning and yeah, it's raining, so yeah, but I'm all good, thank you.
01:13 - Kerly (Host)
We had some sun today 20 degrees in England. Wow, the days before weren't like that, and
then last week they said it was 20 degrees and it wasn't 20 it was windy and it was more like
14 degrees and some people went out thinking it was 20. So so, lisa, can you tell the
audience they know your name now but where you're from, how old you are if you want to
discuss this and also where you're residing?
01:45 - Lisa (Guest)
I'm originally from Torquay in South Devon and my age is 55 and I emigrated to New
Zealand in 2006. So, yeah, been living here ever since, so love the way of life out here, yeah
yeah, I visited in 2020 for a friend's wedding.
02:09 - Kerly (Host)
It's so lovely. It's a lovely island. Yeah, people are very friendly and I got to go to North Island
and South. Yeah, the wedding was in Dunedin, but I traveled the whole of North Island yeah,
I traveled the whole of North Island before I went to Dunedin.
02:23 - Lisa (Guest)
It is beautiful. We lived in Dunedin for a couple of years and we're currently in the North
Island living. But definitely, mr South, yeah, it's quite different. Both islands are quite different
from each other. I find, yeah, yeah, no, it's good, it's good out here, life's good.
02:41 - Kerly (Host)
So which part were you living in when you were in North Island? Oh, it's good out here, life's
good.

02:44 - Lisa (Guest)
So which part were you living in when you were in North Island? Oh crikey, we've moved
around a little bit. So currently in Masterton, which is about an hour and a half drive from
Wellington from anybody that sort of has done the journey or knows the area you have to go
through Wellington and through a set of hills called the Rimutaka Hills Probably should be on
one of the worst journeys in the world, type thing Crazy drivers New Zealanders they really
are. And then it brings you into Wairarapa country, which is Featherston, carterton, greytown
and Masterton. So we live right at the north end, at the other side of Masterton, on a smallish
lifestyle sort of plot, a little bit bit of land but out in the country a bit more.

03:30 - Kerly (Host)
Yeah, yeah, I love it. I have some friends in wellington. I went to wellington.
03:34 - Lisa (Guest)
It's very windy down there oh yeah, it is the windy city. Yeah, it can get really bad sometimes
and flown in a couple of times where the plane's been like go right aside when it's landed.
03:46 - Kerly (Host)
Yeah, I went to Oakland and Hamilton.
03:50 - Lisa (Guest)
I got sick in Rotorua yeah, it can be quite overpowering sometimes. There I couldn't live
there, definitely not.
03:57 - Kerly (Host)
Oh my goodness yeah, I don't know how they do it. I guess you probably just get
acclimatized to it, but it was really giving me headaches when I was yeah it is rather smelly
in Rotorua but yeah, it's very diverse country, the countryside.

04:10 - Lisa (Guest)
You can travel right for a couple of hours and if we went north for a couple of hours we'd be
going through the desert road and seeing a volcano and then you've got the hot springs and
quite beautiful it reminded me of Wales and the Caribbean sort of squashed together, which
is quite interesting because it's just like one minute you see sheep and then the next minute
you can see a beach, and it's not.
04:34 - Kerly (Host)
you don't associate those things.
04:36 - Lisa (Guest)
It's strange really. And then when you're in the South Island, we lived in central Otago, in
Cornwall, for about 10 years and that to me in some respects was like living in the
Mediterranean a little bit. It was very wine-growing country and olive trees everywhere.
Cornwall was nice as well yeah, the town with the big fruit. So, lisa, when were you?
Officially? It was about 2008.
05:09
So after you moved to New Zealand, yes, I'd always felt tired all throughout my life, as
perhaps not as a small child, but as a teenager definitely.
05:17
And my dad, who was quite old-fashioned and he would say to me oh, I swear you've been
bitten by a taxi fly because it causes.
05:29
And I didn't really think anything of it and went through my life just having little cat naps,
spending all day, like perhaps on the weekend, in bed, lived as much of a normal life as I

possibly could do, felt that I was quite sporty, as it was a teenager, I would apply myself to all
sorts of things, but afterwards I just needed a little nap and I'd be good to go again, really.
05:57
And then it wasn't until we came out here to New Zealand and my husband's convinced it's
because everything's the other way around and I stopped working because I had quite a
pressurized job before we left the UK and I stopped working over here so that we could
settle in properly bring the kids up. I was there doing the normal mum thing. It was going to
allow me a bit of time to do that and it all started happening with a vengeance when we
moved to the South Island, which was in 2008. The children were settled into school and I
found that I wanted to get a little part-time job, so I did end up, bizarrely, working at the
School of Medicine in Dunedin and worked with all these professors one was the head of the
neurology department.
06:57
What a coincidence, oh yeah, and I used to take some like minutes for their meetings and I
can remember one meeting whereby I was sat next to a doctor and I was taking minutes.
07:11
So one minute he nudged me and he said Lisa, did you have a late night last night or did you
have too much to drink or something? And I went oh, what came around my minutes that I'd
written, oh my God, I'd obviously gone into like automatic behaviour. I'd written like squiggles
and squirrels all over this page, didn't know what the hell it was all about. And it started to
progress quite quickly from there where I was doing things like going for lunch, getting a bit
of fresh air, and I'd actually end up falling asleep walking along the road. I did that on the
pavement, which was quite scary, and then I hit my head on the cupboard kitchen door when
we were renting this property and my son's convinced that my cataplexy started from there,
because every time I started laughing my knees would buckle and my husband was saying
to me you're not laughing like you used to because I would really enjoy having such a good
hearty belly roll sort of thing.
08:21
And again, very quickly it progressed from that to me losing control of my legs. I'd end up on
the floor and then I would sit, say like of an evening, in the chair and my face would start to
twitch. I kept thinking, oh gosh, perhaps I've got like a brain tumour or something. We moved
from Dunedin to Cromwell and within the first week of us being there my sister came over
from the UK and saw all this happening and of course she was like oh, that's not right,
there's something drastically wrong. We need to get you to the doctors. Long story cut very
short.
09:02
I went and saw a doctor. She then referred me back to the neurology department from where
I used to work and had like the normal sort of tests ECG and I did have a MRI and they
diagnosed me with epilepsy and put me on to epilepsy medication. I was mortified. I kept
thinking, oh my God. Within the space of about six months, I would say, the knee buckling
went to full paralyzation, with the cataplexy when I laughed I was on the floor, not being able
to move, sometimes for, say, say, a few seconds to a couple of minutes, depending on how
funny something was or how anxious I was feeling. Sometimes it would happen if I just

thought of something funny in my head and I would just go down like a pancake and also
certain people would set me off. I still get my head around that, really yeah, there are people
triggers.
10:14 - Kerly (Host)
So you have emotional connection and you also have people triggers. Sometimes the trigger
of the person is because of the emotion that they give you. Yeah, like one of my sisters my
younger sister she's my trigger because she's always telling jokes, so that's her thing. But
some other people it might be something like their husband. I have a friend who used to get
it if her husband was coming home and she hadn't tidied up the house and she'd be anxious,
and then, as soon as he'd come in the door, she'd have it.
10:49
Oh gosh, oh my that's terrible.
10:53 - Lisa (Guest)
Yeah, oh. So that does make sense to me. Now I've got a couple of friends who still
obviously do that, so I kept thinking you know, I'm taking this epilepsy medication and it
made me like a zombie. Honestly, I was just totally out of it. It was as much as I could do to
get myself up, get the kids to school, and by the time I got home I would just sleep the whole
day and I swear that I think my husband bless him. He really thought I was being lazy half
the time. He'd come home and he'd be like what have you done all day?
11:28 - Kerly (Host)
Oh my.
11:28 - Lisa (Guest)
God, where's the day gone, anyway? So I knew I didn't have epilepsy and I kept going back
to the doctor and saying look, when I'm having these fits or seizures or whatever they are,
I'm fully conscious. I can hear everything that's going on around me. It's not that I'm not
remembering what's happening. They didn't. No, no, you've been diagnosed with epilepsy.
You've got to keep on top of the medication. I thought, oh, nobody's listening. Why is nobody
listening to me? Then I do my own research and I literally like Googled I fall down when I
laugh. And lo and behold then the Narcolepsy Foundation in the UK. I started reading stuff
and every single point that it was labeling with things that were connected with narcolepsy.
12:23
I kept thinking, oh, my god, that's me you know everything and it was and went back and I
made an appointment, and it was when you can get into the doctors the next day. I said look,
I think I've got a condition called narcolepsy and another thing that's factored with it called
cataplexy. The doctor wouldn't even entertain it and I just thought ridiculous. In the end,
luckily enough for me, a new medical practice opened up. So I changed the medical practice
and finally saw a doctor who just would listen to me.
13:03
She arranged for me to go and see a sleep specialist in Christchurch and within probably, I
would say two months later after seeing him, my husband said that I must have had a
cataplexy attack in the waiting room, but I actually can't remember that. Anyway, within half

an hour of him taking my medical history what sort of symptoms I've been having he more or
less said I'm 99. He sent me to go and get a blood test, and I always forget what the little
marker is on the blood. Is it HLNA, something 0, 114 or whatever? And he said it's not 100%
positive, but people with type 1 narcolepsy normally tend to have this sort of like receptor in
their blood. And yeah, lo and behold, I did, of course. Then he prescribed dexamphetamine
tablets for me, which I've been taking now since 2008. I did trial at one point modafinil. My
cataplexy came back with a vengeance when I took that medication because at the time the
dexamphetamine tablets weren't funded when I first started taking them so I was having to
pay for them.
14:11
However, now that's totally different. But, yeah, I find that I can still drive. The doctors are
okay with me doing that over here. I know what my limits are. Living with it since then, I know
what my trigger points are as well, and it's not ideal having to take those tablets every single
day, but now, in order that I don't sleep my life away, that's what I have to do. So that's like
where I am really, but I'm also conscious that I try and keep up with any news that's
happening.
14:46
I have met three other ladies in New Zealand. Wow, it was really weird, but there used to be
a television program that came on and it was like current events and that sort of thing. It was
just with one of them. It was a advert and it said how do you feel? Every time you laughed,
you fell down on the floor. This happens to this lady and I just went oh my god, what the
heck. I watched the program, obviously, and it was a lady in Auckland who was basically
telling her narcolepsy story. And it said then afterwards if you have any questions or
connections with anything we've aired on the program, then contact our Facebook page.
15:35
So I thought, oh, my god, I'm going to do that. And I ended up contacting her and we were,
oh gosh, quite in close contact for, I would say, about five or six years, and I ended up
meeting her when we lived in central Otago, yeah, and it was quite peculiar though, because
we both started laughing and then we were both like and then more recently my hairdresser.
16:05
She said, oh, I know somebody who just lives in the next town across. She's just been
recently diagnosed with type 1 narcolepsy. And like sometimes when people say, oh yeah,
I've got narcolepsy and you're like, oh no, you don't.
16:21
I don't really know what you're talking about and I was thinking it was one of those situations.
But no again. This lady does have type 1 narcolepsy with gataplasty and she's just. It's a
whole new process for her and I just feel that it's been quite in some respects not nice. But
I've been there for her as a little bit of support so that she can try and understand a little bit
about what she's going through.
16:46 - Kerly (Host)
I definitely need help in those really early days. I remember back in the day where there was
nothing for us and if you're lucky, if you found something on Facebook, and usually everyone

was in america and there were nowhere else and no one in britain would talk to you about it,
or everyone is so stigmatized, yeah there's definitely nothing over here.
17:09 - Lisa (Guest)
Although it's, it is recognized as a disability. However, it's means tested, so therefore, if you
too much money, there's no disability allowance or anything like that. And I've been seeing,
oh videos on all different social media platforms of people that have like support dogs and
different aids and things like that and I'm just like, oh my gosh, they're so lucky to be able to
even have a say, a counsellor or a government or a department that actually understand
about what their needs are. Because I know that, don't get me wrong I don't feel like I'm
disadvantaged and, like I said, I just want to live my life and experience my life without
sleeping through it that means I've got my own business, which I'm quite proud of.
18:08
I think possibly what is it? If you don't mind, I sell chalk paints, teach people how to use it,
recycle bits of furniture, creative. But I think that had it not been for my narcolepsy, I may not
have gone down that road. So in some respects it's ironic. It's led me there because if I'm
focused on something, I don't go to sleep. Yeah, it's quite crazy really, lisa.
18:37 - Kerly (Host)
I don't know if you knew the part of our brain that's affected because of the lack of sleep, and
everything makes us more creative oh, is that right? Oh, that's interesting, I'm yet to find
someone with narcolepsy who doesn't have super creative abilities, even if that's not their
main job. It's like always been there in the background and then usually when they get sick,
it just comes.
19:02 - Lisa (Guest)
So to the front, yeah oh, that's peculiar because I remember just feeling the need to get my
teeth into something when I started, and it could have been anything from like paper cutting
to. I made cakes for people for a while Celebration cakes and things, just so that I could
focus without that pressure of being sat on a computer where one minute I'm typing, next
minute it's gobbledygook, yeah, that sort of thing.
19:30
And don't get me wrong, you know some days are more difficult than others. I'm finding, as
I'm getting older, that my memory's been affected. Not a huge point where I'm forgetting
names of things or anything like that, but sometimes somebody will say something to me.
Mind you, I think my kids are probably quite good at like saying oh yes, mum, you did say
that. And I'm like did I say that? Yeah, I can't remember. I can't remember, yeah, saying oh
yes, mum, you did say that, and I'm like did I say that?
19:56 - Kerly (Host)
yeah, I think now yeah, because you can't remember. Yeah, that sort of thing, I get that with
my sister all the time and she'll say to me and I'll be like no, you never told me that she's like
no, you didn't. Then she says to me who? Which two of us have a memory problem? You're
not going to see against me right now. I'm telling you. You never told me this story. I've never
heard it before, ever.

20:17 - Lisa (Guest)
Yeah and certain things like that. So it's quite funny from that respect. Oh yeah, we do have
a laugh about it sometimes how did your children take your diagnosis?
20:28 - Kerly (Host)
and your husband?
20:30 - Lisa (Guest)
initially my kids coped better with it than what my husband did. I still think now, sometimes,
after all these years, my husband, nigel, he can't get his head around how one minute I can
feel okay and then that overwhelming tiredness, because he's always said to me if you're
feeling tired, go to bed. But no, it's not like that. He still can't understand how that can
happen. He obviously knows and they are very supportive, but I think also because it has
been for such a long time now, it's just part of the norm. It doesn't affect him so much.
21:06
Before the diagnosis yeah, I do think he thought that I was just couldn't be bothered to do
anything around the house or the breakfast dishes, and it probably was a bit of a worry for
him. We would go out in the car and where we lived we had this like long driveway but it was
shared and he'd be driving, I'd be in the passenger seat. We would literally get to the end of
the driveway, missing out on all this beautiful sort of scenery or whatever, because I'd just be
asleep. I would take the kids to the cinema. That's a nice nap right there.
21:45
Then there's been times in the past when my night time sleep is atrocious. I do get
paralyzations and I'll get really lucid dreams, and it's always the same People breaking into
the house, I'm attacked and I'm trying to get myself out of the nightmare and I'm going oh,
because I can't speak, or whatever. But then there's also times when I've believed that
Nigel's the person that's attacking me and then I've attacked him in my sleep, like all the leg
kicking or whatever, and so he's had to put up with a lot, really, but but he's still here yeah it's
just my way of life now.
22:34
Initially, when I was first experiencing all of this, I was taking myself out of social situations
because I didn't want to be having a cataplexy attack in the middle of a party or something
like that, for instance, whereas in the past I've always been a bit of a social butterfly. It did
affect me that way. But now I've just got to that point where, as long as I've got somebody
with me and nine times out of ten it's either my husband or my daughter she's very good,
she'll just be like oh yeah no leave mum alone.
23:06
She'll be fine in a minute and then when my muscles are then back into 100% and I can get
back up or whatever they're like. Oh my god, are you okay? Oh yeah, no, I'm not having the
fit. Honestly, it's just difficult, isn't it? Luckily enough, I've not been in a situation where
anybody's called an ambulance or anything like that. It's okay nine times out of ten. My
tablets control my narcolepsy. I know that I could go on to antidepressants for that, for 100%
control of the cataplexy, but I don't really want to go down that road.

23:38 - Kerly (Host)
Let's hope somebody somewhere out there one day can come up with a cure for it and also
actually because you're getting older, you don't want to probably put more medications into
your body that could cause other side effects as well because it's not 100% guaranteed that
it will control the cataplexy.
23:55
I've been on antidepressants for the cataplexy for years and, yes, it controls it a lot, as in I'm
not falling to the floor all the time because I'm on it. If I came off it I'd be falling to the floor all
the time, but it never got rid of it. Or, like some people, they take their meds they never have
any cataplexy. That's never been my story, not since I've been 15 years old till now, yeah,
but it's definitely improved like a lot.
24:25 - Lisa (Guest)
I must admit it has put me in a situation whereby, just with all that autoimmune thing going
on in my body, there's been so many times when I've questioned where did it stem from?
Where? What actually happened? I did have a flu jab, probably about 12 years ago, and I
woke up a couple of days afterwards and my husband said to me I think you've had a stroke,
lisa. You know, let's get to the doctor. All my face had just dropped on one side and I couldn't
speak. Anyway, long story cut short, I had got Bell's palsy another autoimmune disease and
the doctor that I saw at the time told me it was related back to the flu immunization that I'd
had.
25:25
I then obviously I'm aware that there was the pandemics vaccination- which was given to so
many people in the UK because it was swine flu, yeah, and the consequences of not enough
research done about it, all of that. So then, when the COVID vaccine came out over here, I
made the decision not to get it done because I just thought I don't know what it's going to do
to me. My specialist was just basically, the advice that we're giving out is that you should get
it done, together with my doctor's advice was the same, but I just felt that I couldn't go
through with it because what sort of related issues that could possibly have. Then
afterwards, yeah, what would it release? Just with my system being as it is? My husband
and my two children they're adults now they had it done.
26:22
I've got nothing against having it done, but we all caught covid at the same time. My
symptoms were not any different from there, which I thought was quite interesting. I just will
not prescribe now to having any more immunizations done for anything, because it just
scares me to death. Oh my god, what's it gonna do to me?
26:46 - Kerly (Host)
if you have autoimmune disease, they put you under special people to have it done early.
They called me in to have it done early and then they said have you ever had any reactions
to any um injection ever in your life? And there was a year I was visiting kenya and I had to
take yellow fever and I had a massive swelling the day before we flew and to go to the
hospital. So I mentioned that to them and they said said okay, you definitely can't have
Pfizer, then you'll have antigenica instead. So I thought okay. So they gave me antigenica,

sat down 15 minutes, as they said, or whatever. I was feeling a bit drowsy or whatever. The
lady gave me some water, went home to mum, still wasn't like feeling 100%.
27:33
By the next day, like like within under 24 hours, my throat closed up. Yeah, I had to go to be
taken to hospital by ambulance and I was staying out of the hospital. I was trying my best not
to get into the hospital because so many people were dying. Yeah, I was in the waiting room
and a girl just looked at me and she said oh my god, you've got reactions to covid jab she
goes. You look like my sister, but she had a rash on top of that you have, yeah, steroids and
everything.
28:07
And then when the second job came around, no one would give it to me. They kept ringing
me and saying come for the jab, and whenever I'd go to the place and tell them what
happened the first time, they're like no, you need to have it done at a hospital, you can't have
it done at clinics, and whatever. Saying that, and I never got that job and after that I got
allergy. My period stopped for a long time yeah, and I got peanut allergy and apple allergy
after this whole thing.
28:36 - Lisa (Guest)
I was made to feel a bit like a leper for not getting it done and I mean we went into full
lockdown here in New Zealand, I think before the UK did yeah, I know, I was there in the
middle of New.
28:51 - Kerly (Host)
Zealand. I arrived 5th of February and I stayed the whole month because I went there for the
wedding and my birthday and everything. And when I got back to England, oh the drama. I
was able to say to New Zealand where I was safe. It was like they didn't lock this place down
till god knows when I got back toilet paper and sanitizers and stuff and I was like what is
going on?
29:14
because at the time when I left New Zealand they were saying on the they weren't even
calling it COVID, they were just saying there's an outbreak in China. That's all they were
saying at the time. But the airlines told us, because I was supposed to fly through China, you
need to change your ticket because people are getting stuck in China. They're not saying
this on the news, but we're telling our people change your ticket. We changed the ticket. Two
weeks later I flew and on the like, couple days before I flew, new Zealand locked out
anybody coming into China. So if I had not changed my ticket, I would have been stuck in
China oh my, oh, my goodness.
29:50 - Lisa (Guest)
Yeah, because they wouldn't have let you in.
29:52 - Kerly (Host)
Yeah, that's one thing, it's extreme, yeah they were so strict, and that's why I enjoyed my
holiday so much. I felt so safe. I didn't know anything was happening. It wasn't until the end
of the holiday that we started hearing on the news oh, there's six outbreaks in another

country that's not China and another country has it, another country has it but still there was
nothing saying that anyone in England had it.
30:14 - Lisa (Guest)
Yet three or four countries had now had two cases, or two cases or two cases yeah, crazy,
eh, really, looking back on it, I remember one day after lockdown and finish on whatever, and
we were going to go to a home show exhibition and I know I'm digressing a bit because it's
not, but it did concern me and I wasn't allowed in because I hadn't been vaccinated.
30:39
I didn't have my vaccine pass on my phone, blah, blah, blah blah. But yeah, but I just made
that decision and I thought, no, I've made it, I'm going to stick with it. I don't know what it
could possibly do to my body again and I'm not prepared to put myself through Bell's palsy,
definitely because it was horrible, horrible, yeah, and with that whole autoimmunity, just not
knowing what effect it could possibly have.
31:06 - Kerly (Host)
And a lot of people got sick from the injections. It triggered things in people's bodies that
people don't even know about.
31:13 - Lisa (Guest)
And it's still happening now, yeah, yeah. So for once in my life I think I feel very glad about
the decision that I stood by my possible health benefits. But I know that it's thecolepsy
effecting also my eyesight, but I do have like quite high pressure behind my eyes. I go to the
opticians regularly to make sure that glaucoma hasn't set in or anything like that but, I guess
does it go hand in hand with the whole sort of degenerative disease that it is all sorts of or is
it just the fact that I'm getting older and that sort of thing?
31:49
but I also feel out here that I've just disappeared under the radar a little bit. If that makes
sense, there's not enough people with the disease to have a help group or like a conference
or anything, nothing like that yeah, there's quite a lot that happens in Australia.
32:10
But then obviously you've got to be able to afford to, yeah, to fly out, then go over there for a
conference or whatever. But yeah, it's just peculiar way, I just look back and my dad bless
him, saying to me you're, you've been bitten by a tsetse, fly, lisa. And now I think, oh, my
god, was it a childhood disease that did this to me? Was it an immunization that I had?
32:34 - Kerly (Host)
oh, who knows, you'll never know that's usually the three things they say. Either it's genetic,
it runs in your family, you had some type of virus or something that triggered it off, or some
type of immunization. Oh, and there's a fourth one severe head injury. Oh really yeah.
32:52 - Lisa (Guest)
I haven't had a head injury, apart from hitting my head on the kitchen cupboard. But, yeah, I
just think you've got to thank your lucky stars, haven't you really? And try and be positive

about it, and for me, that positivity has manifested in me being creative and now having my
own business, and hopefully it's going from strength to strength.
33:17 - Kerly (Host)
Can you share, like your website, so people can know where to find you?
33:20 - Lisa (Guest)
Yes, yeah, I can do that just getting it out there, and if it makes you feel good about painting
something or upcycling something, the love of doing it, and that's all that counts at the end of
the day, isn't it really? But, yeah, it stops me from falling asleep. So, yeah, and I just got to
make hay whilst the sun shines, really, because I don't know how much longer I'm going to
be able to carry on doing it really, but whilst I can, I will.
33:49 - Kerly (Host)
So yeah, that's me that's really good. So is there anything about narcolepsy that you'd like
people to know?
34:01 - Lisa (Guest)
I tell you, what does make me laugh is when people say to you oh god, I feel exhausted, I
feel so tired and I think you've got no idea. You've got no idea about. Yeah, you might just
feel a little bit tired, but oh my gosh, no, I don't know. It must be like the equivalent of maybe
running a marathon every day and then having to get back up the next day and doing the
same thing all over again, because I think it's just so important to try and keep in a positive
mindset. It could be quite easy to go down that whole road.
34:37
Of woe is me, but I think the trigger point for me has been do I want to spend the rest of my
life asleep? Don't get me wrong. There's nothing more than I crave sometimes and I think,
oh, I just have a little cat in my hand, and I don't think it's so invigorated. It could be like five
minutes or ten minutes or even a couple of hours. But yeah, you've just got to keep on
plodding through life, because we're not here for very long, are we? So you've got to make
the most of it.
35:07
And if that means for me, keeping up with my medication and you just never know what's
around the corner. Life's too precious to just sleep it away at the end of the day, really. So
that's my take on it and I think as long as I keep telling myself that, then that's what gets me
through. Having a good support network, my family there's only the four of us out here.
However, being able to speak to people about it helps. I know sometimes during a cataplexy
attack, people just can think oh, she's gone to sleep and I'm like no, I'm not asleep.
35:46 - Kerly (Host)
I'm very much here here I can hear you know it's the whole education sort of thing.
35:50 - Lisa (Guest)
But then there aren't so many people over here that have got in new zealand that the
population base isn't the same as what it is in the uk. Hopefully there's probably more
awareness now than they used to be. That lady that I was saying that was being recently

diagnosed. Only somebody with narcolepsy can know what they're going through really at
the end of the day, and I just feel that I needed to be there for her. Yeah, support is a big one
really if you've got a good support structure there's nothing like having an narcolepsy friend.
36:27 - Kerly (Host)
I remember when things were really smart in the UK and I've met Lindsay Radcliffe. Shout
out to Lindsay and she was the only person in England that wanted to talk and we spoke for
two hours straight and then she was like oh my gosh, we're so tired now we need to to take
a nap, and everything that she said I was just like it's like she was reading my mind.
36:50 - Lisa (Guest)
And I was like who is?
36:51 - Kerly (Host)
this woman, this is crazy. And then she invited me to her wedding and I went up to
Manchester and I went to her wedding. And it was like we call each other twins. Oh my gosh,
it was like when I just watched her mannerisms, everything I was like oh my god, this is what
I look like yeah, I think my motto is life is definitely too short.
37:17 - Lisa (Guest)
I'm not going to sleep the rest of my life away and basically try and get out there and do as
much as I possibly can before I can't anymore, you know wear that red dress go on that
holiday.
37:34 - Kerly (Host)
Do what you need to do. It doesn't matter if you're gonna sleep half the time and the other
half time you'll be awake.
37:40 - Lisa (Guest)
So you will get some memories and go back and re-watch that film, if you have to.
37:49 - Kerly (Host)
That's a beautiful thing also about non-clips you can watch the same film maybe four times
before you actually get the whole film, because especially if it's comedy or you've had some
cataplexy during some of it. So next time you watch it, hopefully you have a catapult, a
different part.
38:06 - Lisa (Guest)
I said, oh my gosh, I didn't know that happened in the film I think I was into watching a Netflix
series, and it took me a couple of months to watch something that a normal person would
have been Like over a weekend or whatever. Yeah, a couple of months it took me to watch it,
but still got there at the end. That's what counts absolutely. And just keep on laughing as
well, because, like now, I haven't had my medication this morning, because what are we? It's
eight o'clock here and and?
38:42
I can laugh and I'm okay, depending on how tired I feel can have a knock-on effect to the
cataplexy. Then if that sort of makes sense, yeah, 100%, yeah. So I try and have what I call

maybe a good night time routine where I try and settle myself a bit more before I go to bed.
Sometimes I'll have a bath, just that whole sort of like wind down, nice sleeping environment
and I know that I'm only going to get a few hours sleep. So I try and make the most of that
sleep that I do try. But also I'm finding, as I'm getting older, that my sleep during the night is
getting worse as well that the length of sleep, more or less. I think. Possibly as you do get
older you're like anything tends to wake me up. That's quite annoying really when the rest of
the house is like deathly quiet and I try and then creep around if I wake up or whatever we've
got dogs, and then the dogs will start barking, or.
39:46
It's quite crazy, though, because, going through the teenage years, I can look back and
remember, especially before having my children, which was like early 20s. I go out partying
on a weekend and I'd spend a real good 24 hours in bed if I wanted to, and I would get
brilliant sleep and I look back on those days now and I think, oh my god, where's that gone?
Because I definitely possibly three or four hours at the most.
40:17
I just mean four hours max and you just say oh, here we go again, type thing it's always
interesting.
40:24 - Kerly (Host)
You meet people and they're like, oh my gosh, I only had five hours sleep last night, I only
had six hours sleep. And you just look at them and you're thinking, oh poor you, poor, poor
you. And they're like, oh my gosh, they're like I can't function, I've got bags under my eyes,
like you're talking to the wrong person. Okay, no sympathy for me. Here I just I'm. I'm living
on four hours every day, so suck it up.
40:48 - Lisa (Guest)
I think I probably feel thankful that at least I've got to that point where I have got a diagnosis.
I know what I'm dealing with and it's up to me how far I do any research or whatever or keep
up with what's happening. I still think, oh my gosh, I still can't believe that I've got what I've
got. It's the morning times that are worse for me. I'll probably be up at about five o'clock and
then I'm awake so I'll do some stuff, but then I find that I want to go back to bed again
because I do feel quite sleepy. But if I know I do have a big day ahead of me, I will try and
have a bit more sleep if I can.
41:33
At work I've got a really good business partner. Actually we've got a workshop area and I'll
just flick the lights off and have 10 minute nap just to get me through the rest of the day. I'm
not saying that I do that every day, but but I know that I can if I need to. I think you've just got
to try and find that sort of what works for you. I've seen TV programmes where people are
wearing that headgear and stuff. If that's what you've got to do, then so be it.
41:59
I've never got to that point where I've been scared about a situation that I'm in with my
cataplexy. I used to fight it when it first started happening, which is quite consuming, but then
I think I must have just got to that point where I thought no, I've just got to go with it and I try

and think about other things when it's happening so that it stops me from thinking funny
things, if that makes sense or like that emotional heightenedness.
42:30
Nine times out of ten it's when something hysterically funny happens for me, or, as we were
talking about that trigger person. That's made a lot of sense to me now, so I thank you for
letting me know about that. Perhaps I should come back to the uk, because then it would be
the other way around with a body clock. Maybe I don't know I would be able to sleep through
the night time. Then I know that there's so much research that's going on behind the scenes.
It is difficult here in new zealand when you don't have that many specialists that know about
the disease, really, but I'm sure it's probably better now than what it was say 10, 20 years
ago and the more we speak about it is, the more we bring awareness, so that more people
can get diagnosed early, yeah and social media platforms are such a great way of doing that
as well.
43:27
Looking back on it, just that's how you finding me, or whatever. I just thought, oh, because I
was. I saw all these comments on the Facebook page about oh, I can't remember what the
subject was, but I thought that's when I needed to comment about try living here in New
Zealand yeah exactly, yeah, and you're right.
43:47
It is about getting it out there and making people aware, and although I am over here, I do
still try to post like stuff on my facebook page about, like world narcolepsy day or whatever
and things like that, because just to make people aware and I think it's something that a lot
of people have heard of but don't actually recognize what it is what it really looks like or how
it really affects people.
44:15 - Kerly (Host)
So that's me really. So I have one more question for you. You could press a red button and
by pressing red button you'd get rid of narcolepsy. Would you press it? And why not?
44:27 - Lisa (Guest)
oh gosh this is going to sound very strange in a way, but for me I perhaps would like to do
that with the cataplexy. I would definitely push that red button for that because it is so weird.
But maybe not so much for narcolepsy now that I've lived with it for so long, because for me
that's the normal and for me also I wouldn't be doing something that I love now. I'm not
saying that I would be starting a job that I didn't love doing, but I'm a firm believer sometimes
that if something's meant to be, it happens. I just feel what's good for my soul is allowing that
creativity to come out, that whole passionate side of what I'm doing, helping people achieve
similar things for them. I just get such a buzz out of doing that and I think maybe if I push
that button on narcolepsy, yeah, I wouldn't perhaps maybe be so passionate about these
things yeah, I don't know if that makes sense to anybody, but yeah.
45:39
I feel cataplexy. Definitely bam, that'd be gone.
45:43 - Kerly (Host)

But yeah, no, I'll live with my narcolepsy, that's okay oh, lisa, it was lovely talking to you and
hearing your story.
45:54 - Lisa (Guest)
It's really refreshing, yeah and if it helps just one person maybe recognize anything
that symptoms if they're going through it and it's not that whole scariness behind. Oh, my
god, my God, what the heck have I got and why am I falling on the floor and I can't move and
all that sort of stuff and thinking brain tumour or whatever. Had I been maybe a bit more
aware back then. But then, as I say, you know Google, who knows what might have
happened if I just hadn't thought I'm just going to try and self-diagnose because nobody's
listening to me.
46:29 - Kerly (Host)
Yeah, you had to really advocate for yourself.
46:32 - Lisa (Guest)
Absolutely so. Cataplexy can go, but I'll stick with my narcolepsy.
46:38 - Kerly (Host)
That's nice.
46:41 - Lisa (Guest)
Thank you so much.
46:43 - Kerly (Host)
Thanks for coming on. We really appreciate you and wish you a good rest of your day. Thank
you At the end usually say happy napping to everyone. Happy napping, Happy napping.
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.