Kyoto and welcome to Swim Chats, a podcast about swimming.
I'm Shona Riddell, a writer and swimmer from Wellington Alteredo
in New Zealand. For each episode, I talk to a
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description. First of all, welcome to the
podcast, Kate. And I'll just explain to
listeners that we do know each other in real life.
I was going to say that we swim together and in swim squad, but
it's more that we sort of swim parallel to each other.
True, because we're in different lengths.
So I I've probably known you just over a year because I
think, yeah, I think I joined just over a year ago.
I know that you're, you're a sea swimmer and a pool swimmer, but
I don't know your, your sort of swim origin story of like when
you started. So would I'd like to share that
first for me and for people listening.
Sure. Happy to share that.
I actually swam as a child growing up.
So I swam in a competitive swim squad called Rainbow, I think it
was, and it was at the Boys and Girls Institute in Wellington
when that still existed. So lots of really early sort of
5:00 AM starts and getting out of bed at the crack of dawn.
And then I went on to play water polo semi competitively.
So I ended up in a team that was, I think it was the under
sixteens for Wellington. And I really enjoyed playing for
a club as well as school. So yeah, I really got into the
fun side of swimming through water polo when I was at
college. And then I had a bit of a break
from swimming. So when I got to university and
into my first job, I didn't really swim that much.
And then I moved up to Auckland in 2000, was looking to kind of
make new friends and settle into life up there.
So I joined a swim squad, an Adult Swim squad there at the
Tepid Baths down on the waterfront.
And then while I was there, some people said, oh, we do sea
swimming as well if you'd like to join.
And so I did a few sea swims with them and then I did my
first ever ocean swimming event, 2001.
Kept doing that, moved overseas for a bit, came back to
Wellington and then again kind of went back into the pool, but
swimming on my own. And then eventually I found my
way to Barb's group. I think through my hairdresser
at the time, it suggested that Barb was great and there were
really friendly people there. So I found Barb's group and then
I stumbled upon Teemon's for Nobos group.
Just was down at Freiburg one Friday morning and saw all these
people were having a lovely time and asked them in the changing
rooms, who are you and what's it all about?
And then I joined into to that squad as well.
So yeah, now I'm really into it. Sea swimming and pool swimming
kind of come and gone a bit throughout my life.
Yeah, that's cool. Thank you.
And you mentioning your hairdresser sort of made me
think about how, you know when we're swimming, like we don't
always know what people's jobs or professions are, and that
sort of can come up later. And so for me, I didn't know
what your day job was until you were in the newspaper, I think
it was about a year ago and you were profiled about living in
Wellington and you know, you're swimming.
Just while we're talking about jobs, do you want to talk about
your your day job? Sure.
You're right, though. Swimming is a great leveller, so
no one really knows what anyone does outside of what we do in
the pool or the sea. And I love that side of it
actually just being yeah, just being a swim buddy with lots of
people. But my day job is chief
executive officer at Volunteer Service Abroad.
I've been here nearly four years in this job and VSA, as we call
ourselves, scenes New Zealanders into lots of locations across
the wider Pacific for volunteering assignments, up to
two years for each assignment. And it is volunteer work, but we
do cover an allowance and accommodation and travel costs
and insurance. So yeah, we're a little charity,
but doing good work internationally.
Yeah, that's cool. And so as part of your role, I
imagine that you get to travel to different parts of the
Pacific and, and are there opportunities to swim where,
where you are like when you're not working?
Yes, I do get to travel quite a bit.
So I've been to all of our country locations which spans
from Timor Leste, which is really South Asia rather than
the Pacific, through Papua New Guinea, Bodenville, Vanuatu,
across into Kitty Bus and then into Polynesia, So Samoa, Tonga,
Cook Islands, Fiji. So I have been to all of those
locations in the last few years, but I have to say swimming
hasn't featured highly on my time there, which might sound
odd. But the reason for that is that
a number of those patients swimming is quite hard.
So due to pollution and the local areas that you're in,
particularly if you're in the urban centers, you just can't
swim. And the risk of infection and
illness is quite high. And also sometimes just not safe
to get into the sea. So it might be that there isn't
really a lagoon sitting and it's quite exposed to the elements.
So yeah, lots of different reasons.
And then obviously just being busy, so often I'm in and out,
quite a busy agenda of things going on.
But I did one good story from when I travelled.
I did get to swim at a beach called Bonegie and the Solomon
Islands, which is about two hours drive out of Honiara over
very potholed roads. And you get there and no one
else on the beach, get into the water and there's all these sort
of ships and planes and things that came down during the war,
which have now become amazing snorkeling and dive sites not
far off the beach. You come out there snorkeling
and suddenly there's just this amazing array of marine life and
things going on. Yeah, every now and then I get
an amazing experience like that in the water, but most of the
time it's it's just work. Yeah, fair enough.
Yeah, You're on a work trip. And it's also a reminder that
not everybody of water is swimmable, and not everybody is
as lucky as we are to have, you know, swimmable water.
Yes. Yeah.
I know that another of your roles has been with water safety
in New Zealand. Was that your swimming that sort
of brought you into that role or is that more a separate?
Thing, yeah. So I was on the board of Water
Safety New Zealand. I ended up being the chair for a
few years as well. And Water Safety New Zealand is
kind of like the peak body for the water safety sector in New
Zealand. So safe, life saving, Coast
Guard swimming New Zealand, but lots of little smaller kind of
groupings as well. And I did get into that because
I was really interested in water and safety and just how we could
do better in terms of the drowning problem in New Zealand.
And I was interested in continuing to do a little bit of
governance work as well alongside my day job.
So yeah, that is a really fascinating organization to be
part of and really interesting to see all of the different
sector groups that do really good work around water safety in
New Zealand, despite the fact we have one of the highest routing
rates actually in the developed world.
Yeah. It is still.
Yes, yeah, still really high. It's interesting.
It kind of fluctuates up and down a little bit year on year,
which could be related to climate or I think COVID.
Actually the numbers dropped a bit and then went up a bit as
people got back into open water activities.
So can be really influenced in New Zealand by changes that are
happening, but it is still high. And I know that you're a very
accomplished swimmer. You're in the fast lane and swim
squad. Have you done any long distance
swimming like I know you you've enjoyed being in swim events
over the years. Like what sort of distances have
you done? Gosh, I don't know if I put
myself in the accomplished swimmer category convened to
some other amazing Wellington swimmers.
Yes, the longest I have swam would be a 10 kilometre swim and
I did it with Fit and Able, which I think you might have had
others on the show that talked about that.
But there are great organization in the South Island that run
swim adventures. So we went to Moana and swam on
Lake Branagh, which is a really big body of water, very cold in
winter but reasonable temperature in summer.
And and as part of that three or four days of swim adventure, One
of the parts of it was a 10 kilometer swim from one end of
the lake to the other. And the thing I really loved
about it was really well supported.
So we had someone in an IRB right alongside us helping out
whenever we needed, and there was also lots of stopping.
So it wasn't a race by any stretch.
We stopped every sort of half an hour or so, had lots of lollies
and snacks and drinks of water and even like a hot coffee and
things at one point. So yeah, I did it with a couple
of Swan buddies, which helped, but also just lovely kind of
atmosphere and stopping lots and in really good conditions as
well. So I couldn't claim to be able
to do long distance at pace kind of fast swim events, but I
really love that one the. Other one that's that's massive
congratulations. I just.
Wanted to get there. We all felt like, Oh my gosh,
that was amazing and kind of a interesting experience because I
think that shows that probably lots of people can do that
distance, but we just don't quite put ourselves out there to
do it. Exactly.
The sort of thing that interests me is doing a longer swim sort
of in an atmosphere like that where you're not competing, like
you're just there to do it. Sort of nice people.
I would finally encourage it because lots of us, I'm not
really that interested in competing necessarily, but it
was just a really nice way to do it.
I did do the epic swimming in Taupo, but just the seven and a
half one seven and a half K, which is lots of loops around
and around. And I have to say I quite
enjoyed it, but I didn't enjoy it nearly as much as the 10K.
You know, it was some good friends and kind of stopping
lots along the way. That was more my kind of style
of swimming. Yeah, mine too.
And I've, I've heard a little bit about the Lake Brunner sort
of trip that they offer. I didn't know there was a K as
part of that. And it's a S Island lake, so as
you said, the water temperature can be quite fresh.
Were people wearing wet suits for that there?
Were a few, yeah, say half and half, a few wearing wet suits
and a few not. And I think from memory maybe it
was somewhere between kind of 17 and 18° ish.
So for a Wellington swimmer, which I am, that's actually
pretty mild. And I don't wear a wetsuit
anymore. So I was non wetsuit.
And there was a yeah, a few of us that were non wetsuit as
well. But it was pretty relaxed about
whether you were a wetsuit or not, just whatever you felt
comfortable with. And do you tend to swim year
round in Wellington? I do now yes and I wasn't a year
round swimmer until about or after COVID till about 20 maybe.
2021 is when I started Norm Wetsuit and year round at that
point. And was that, you know, partly
because pools were closed and whole social distancing, or do
you think it just kind of felt like time to carry on through
the year? I think it was definitely
related to pools being closed. So I live in Island Bay and
working at home, I can see the hat, the water from where I am.
It was about August, I think it was that second kind of period
of lockdown in 2021. I just thought, you know what,
I'm just going to go and jump in the sea and have a go and see
what it's like. And I just did a lap or two up
and down in Island Bay and felt great and thought she's not as
cold as I thought it would be. And I think I can manage that.
And I also had been swimming right through summer without a
wet suit. And I've got a good friend in
Teammons group who kind of, we egged each other on and we were
both kind of jumping in for cold plunges after squad.
And then we looked at each other and we were like, maybe we'll
just keep going. Like why don't we just keep
swimming and see what happens? And if we get to a point where
it is actually too cold and we're not enjoying it, we can
always put the wetsuit back on, but just never put it back on.
And then it rolled around to summer again, and off you go.
Yeah, which was pretty amazing. And yeah, it does seem to be a
theme in Wellington that people shed their wet suits at some
stage and just enjoy that connection.
I'm not quite there. I mean, I found as soon as I
stopped bringing the wet suit, I just felt much more comfortable
in the water and a weird way. I felt cold, of course.
But yeah, my body was kind of in a better position in the water.
So I wasn't getting kind of my hips pushed up and things out of
sync and just so much more freedom to be able to move and
your arms and not restricted around the rest of your body.
Yeah, it just felt a whole lot better to be without the
wetsuit. But I did find it incredibly
cold to start with. And I'd have the full on shakes
afterwards and you know, take an hour to warm up and things that
that gets a little bit easier as well the more you do it.
Yeah. And do you just sort of learn to
listen to your body and you just sort of get more acclimatized
and figure out when when it's time to get out?
I think that that is the case. I definitely was a quite
cautious to start with. So we'd just go not even as far
as I thought I could go, and then come back and stay
relatively close to shore. And I always remember it felt
like quite a push to go even to the second or the third boy, or
even once I got to the lighthouse without a wet set.
That was an amazing moment of like, oh, actually I think I
could do this. So yeah, listening to your body
and my good radar for it was, how do I feel after this one?
So often when you're in the water, it's really hard to tell.
Am I cold or am I just getting worried about it?
That afterwards I would know based on how much I was
shivering and shaking or whether I could hold a conversation in
the changing rooms or not. It's always a good taste as
well. Yeah, and how do you like to
warm up afterwards? I'm a big fan of the layers, so
I don't have a shower because I think that actually makes me
colder. So stay to straight out of the
water and then putting on heaps of layers.
So like a thermal and then a one jersey and a second jersey and
the big swim coat, hats and gloves and lots of warm drinks.
So is try to carry a warm drink with me with its cup of tea or
just a bottle of hot water. And then of course coffee is
great. So food and warm drinks is good
as well. Yeah, cool.
And so this next part we can, I can cut this out if you, if
you're not comfortable talking about it, but I was going to ask
about your your trip and the long swim that you did over
there. Yes, yes.
Thank you. Are you all right to talk about
that? Yeah, I'd really like to.
Yeah, I'm happy to. Do that.
Yeah. OK, Cool.
So am I right that it was it was last year you had a family trip
to Europe and you'd planned quite a Big Lake swim?
So we went to Italy and we were up in a place called Largo
Daughter, which is about an hour north of Milan.
Really, really beautiful spot. And I did an event in the Ocean
Man series kind of halfway along the lake to another point on the
lake. So I think it was about 5, maybe
just over 5 kilometers. But as you can imagine, the kind
of that time of year, it was warm air temperature and then
warm also in the lake. So it felt probably longer than
a typical swim in New Zealand, just because you're grappling
with that change in temperature as well.
Yeah, yeah, yeah. And yeah, so it's hot European
summer. So that's something we're not
used to in Wellington. And I remember following along.
I think you set up a separate WhatsApp chat.
Yeah, I did. Yeah, yeah.
And what was the swim like on the day?
Like even 5 KS is still, you know, for most people, that's a
pretty big swim. That would be a good few hours.
Yeah, yeah, I mean, it was great.
I I guess the thing I noticed right away was those swims in
other parts of the world are such a big event.
I don't know if you've done 1 China, but they, there's all
this hype in there. It's like music and people
talking on microphones. There's so much going on.
Yeah, there was a lot and there was heaps of people.
I mean, there would have been, I think well over 1000 people that
were competing in different events on the day.
So that was quite different for me.
I'd never done an event like that outside of New Zealand.
And the other thing I noticed was just probably because of the
logistics of it, there was quite a lot of, you know, time to get
to the start line. And then the finish of the event
was kind of an hour from where we were staying.
So there's lots of different logistics around it.
And then, yeah, just a lot more people in the water and some
pretty competitive people and all wet suit, wet suited up,
which I found fascinating how warm it was that people were.
I'd say most of the people were wearing wet suits, which really
surprised me too. Different kind of open border
culture. Yes.
And did you enjoy the good swim itself?
I think I found that I it felt like a really long way, even
though I'd done longer swims. And I think that was partly down
to the, as I say, the water temperature, the air
temperature, the amount of kind of fessing about getting to this
hotline and all that kind of stuff.
But it was, it was great to do it and it was really good
atmosphere and good thing to do. So I definitely recommend it to
other people if you're planning a trip to Europe or all other
parts of the world. I think they do similar swims as
well, but not as low key as New Zealand is what I'd say.
Yeah, that makes sense. And also, you know, it might
have felt a bit longer because you're doing it by yourself,
right? Like I'm assuming you didn't.
Yeah, yeah, I think. We find a different feeling too.
I think so. Shine I I had my family there,
obviously, but they're not swimmers.
So I was kind of on my own on the swimming front.
And yeah, it kind of reminded me.
It's quite nice to have swim buddies who can kind of, you
know, go to the start line with you and, and have a chat and
things. So yeah, yeah.
And then I found the recovery afterwards quite hard, but I
think that's because we were travelling straight away.
So the next day we got on a train and went down to the.
And then I'm really happy to talk about kind of what happened
next because I had a seizure essentially a day and a half,
maybe 2 days afterwards in Venice.
So it was all quite an extreme kind of experience and I don't
think it, well, I know now that it wasn't related to this woman
necessarily, but probably that put me into a state where I was
potentially dehydrated or yeah, kind of other things going on in
terms of over exertion that might have contributed.
Yeah. Yeah.
And yeah, I'm, I'm really sorry, but that happened to you.
I remember thinking at the time when you sort of said what
happened after you got back. But you know, that sounded quite
scary and also quite surreal. Was that the first time you'd
had a seizure? Yes, absolutely.
I'd never had a seizure before and I don't remember any of it,
which is is also another really surreal thing about seizures or
any kind of medical event that kind of leaves you unconscious.
So I now know that it was a tonic clinic seizure, which used
to be called a grand Mal seizure back a few well quite a long
time ago. And subsequently I've been
diagnosed with eucalypse. So I'm happy to kind of talk
more about that because it's been quite a major kind of shift
in terms of life changes. But at the time I.
I was walking, we'd had a busy day kind of out and about in
Venice and then was walking through the streets.
And I have no memory of this, but I think I kind of stopped
being out of talk coherently to my partner and daughter.
And the next thing I was on the ground, you know, shaking,
unconscious. And then I woke up and I was in
an ambulance boat of all things. But that's how it goes in
Venice. So they don't have ambulance
that drives obviously, because there's no streets.
So I was in the boat and I actually made a phone call.
I don't really remember this, but I made a phone call to my
partner to say I'm in a boat, where are you?
What's going on? And that was when I realized
that clearly something had happened.
Ended up in the emergency room at the Venice hospital, but what
turned out to be nearly 24 hours.
Again, quite a fascinating experience and easier in
hindsight when you look back on it.
No one spoke English really, so everything in Italian.
I was in a room full of other patients who were also talking
to each other in Italian and sharing food and having a chat
and lots and lots of different testing, which really kind of
led to the potential that they thought it could have been
epilepsy but needed more assessment and things to look
at. So suggestion was go home, get
some more assessment and see what's happened.
Yeah. And how did you find the journey
home? Like were you still recovering
from the seizure at that point? In hindsight, yes, I was, but I
don't think I really knew at the time that that was the case.
So yeah, I felt quite the least way I can describe it as I felt
like I kind of had perhaps kind of head injury type symptoms.
So really tired, really kind of light headed and not quite with
it. Almost struggling to find words
from time to time, so not quite able to string together
sentences or get things coherent in my own mind.
So I didn't quite know at the time that those are, they call
it postictal, but post seizure symptoms that are really common
and particularly when you've had a tonic clonic seizure because
of the deep impact on your brain at the time.
So, yeah, so we changed all our flights and ended up on quite a
long stretch back to New Zealand via Germany in the end of all
places, which, you know, again, I have kind of mixed amounts of
memory of, but I just remember getting back and thinking it's
great to be home, yeah. And when so how long was it sort
of before you were diagnosed? Like what was the.
Yeah, like after you got back to New Zealand and then the
diagnosis, was it a long wait or was it something that happened
fairly quickly? It was.
A fairly long wait, but I imagine other people have waited
much longer for diagnosis so I can't complain really.
And I think the New Zealand health system has been amazing
from my perspective. So I was diagnosed in late
September. But in order, in order to
diagnose epilepsy, the criteria essentially are that you need to
have another seizure. So more than one seizure within
roughly kind of 12 months to two years as the general rule.
But it could be longer than that.
Or, and, or you need to have epilepsy confirmed on an EEG.
And an EEG is the one where they stick the nodes all over your
head and then do all sorts of different procedures to try to
induce a seizure from an eclectic perspective and then
see what your brain is doing. So for me, I saw my GP straight
away and then I was quickly referred to the neurology
department at Wellington Hospital and they sent me for an
EEG really fast, which will happen quite fast as well as a
brain. And the brain MRI thankfully
came up fine because sometimes with epilepsy, there might be
lesions on the brain or things that are causing the seizures.
But the EEG showed what's called epileptic spikes, I think they
call it, which is where your brain, the electrical activity
in your brain is suggestive of seizure activity.
So, and then I had a couple of or one other at that time, minor
kind of seizure. So it wasn't one where I fell
unconscious. So we're shaking.
But the thing with the epilepsy is that there's a whole spectrum
of different seizures that can happen.
So I'd had another minor seizure and then I had the EEG which
confirmed epilepsy. So that combination of things
meant by late September I've been diagnosed with epilepsy.
Well, and at that time, did you know other people who had
epilepsy? Was it something you were very
familiar with? I knew nobody at that point.
There was no family history of it, which is sometimes the case.
There was no, yeah, sometimes it's based on having a head
injury earlier in life or things like that.
But I didn't have any of that history.
So I didn't have any family connections.
And I also, at the time, wasn't aware of any friends that had
epilepsy. But it is quite a hidden thing.
So unless you know or that person has decided to share it,
there'd be no reason why you might suspect that someone has
epilepsy. It's quite interesting.
I was looking on the Epilepsy New Zealand website, which I'll
link to, and I think it said there were 65 million people
worldwide who have it, which is a lot.
I mean, that's not, I think it's .8% of the world's population.
And like, there are different types of epilepsy, but it can
affect anybody basically sort of different ages, genders, you
know, populations. Do you know if it's common to
develop it later in life? Yeah, I think your steps are
right. So I know.
So I've heard it's 1% of New Zealanders, so it'd be about
right, kind of .8 of the worldwide population, which is
quite a few, right. But it's still only 1%, which I
guess means you're unlikely to know someone, but you're
probably walking past someone on the street day-to-day, but you
wouldn't know. Yeah.
So I, I think a, yeah, I was really surprised to be in that
1% because I didn't have any of the history.
But the more I read about it, the more I realized that it can
develop at any age and often with absolutely no, I think it's
60% or 65% have absolutely no known cause for the eclipse.
And then there are though, a number of people who might
develop it, particularly in childhood, I think who could
grow out of it, so to speak. But at my age and stage of life,
you don't necessarily grow out of it.
It's something that you have for the rest of your life that
really common to have no known cause.
Wow, And since your diagnosis, have you come into contact with
any other swimmers who have epilepsy, whether they're in New
Zealand or anywhere else? Like cuz they're sort of a
group, you know, like not not necessarily a support group, but
just people that you can talk to who are in a similar boat to
you. I've struggled to find many
shine it and I'm happy to talk about kind of what I've done to
managed swimming with epilepsy because that's not an easy
thing. I think the first one of so the
specialist told me a few things when I got diagnosed in this
order. So you can't drive, you can't
swim and you can't travel for the foreseeable future.
So I was like, OK, that actually takes out quite a lot of what I
do, both in my spare time, but so at work.
But I've worked our ways around all of those things in different
regards. I found a bit of information
online, particularly about swimming in the pool, nothing
online about swimming in the open water, a bit about kind of
what to do if you're just paddling in the shallows, but
not much about actual swimming. And then I did come across one
woman who's in Barb's group, Shona, and I think her name's
Jenny, but I'm not 100% sure because I haven't seen her very
much at Barb's lately, who did come up to me and say, hey, I,
I've had epilepsy. I understand.
I think she had a brain lesion. So she was able to have surgery,
which then removed the kind of likelihood for seizures.
So that is really the only person that I've had just a a
slight brush with in terms of swimming and epilepsy.
Yeah, which isn't much, is it, considering how many swimmers
there are in Wellington. But maybe people listening to
this podcast like someone will be a swimmer with epilepsy.
They might be overseas as well. Yeah.
Cease listeners and you know, maybe they can make contact as
well and they'll have they'll have advice and experience and.
Yeah. I'll also mention that I'm
recording this in March. Today's the 23rd, and this is
quite timely because March the 26th is Epilepsy Awareness Day
and the theme is Purple Day. So it's hashtag Purple Day and
then people are encouraged to wear purple, which I am today,
even though this is an audio podcast, but I'll wear it again
on the 26th, hopefully. Did I say 26?
Yeah. Good.
OK, that's Epilepsy Awareness Day.
Is there like I know you were only diagnosed sort of in the
last year. Are you planning on doing
anything to sort of mark the day or?
Yeah, it's funny. I've had a few thoughts about
what I could do because I would like to.
I think raising awareness is really important, not just for
like me being able to tell my story, which is lovely, but I
think I'd love just to meet other people, particularly in
the swimming community or even in the work kind of seems to
maybe do similar jobs to mine because you can learn so much
from other people that do have it.
And yes, I struggled with what to do this year because it's all
quite new for me as well. And I had thought that I might
get some swim caps printed or some towels and kind of sell
those and raise some money. So I know, but I've left it all
a bit late. So I don't think I'm going to
make it for this for this people day.
But maybe that's a next year thing if I can get organized.
So what I'm going to do for this one is actually just share my
story a bit more widely. So this is great to be able to
come on your podcast, but also I, I will share some information
with Epilepsy New Zealand that they can put up through their
channels. And yeah, just really keen for
people to kind of know that it's a thing and that it exists.
And then hopefully people might reach out and ask me questions
or I can actually just find some other people to chat to about it
because it's something I don't know much about and I still
don't know many people who have had it.
I did, and now that I've got it and talking to other people, I
did find out that one of my previous work colleagues, his
daughter and his wife both have epilepsy.
So that was really helpful actually just have a coffee with
him and a chat about what it's been like for how Maggie says a
supporter of his his family. But what they've found helpful
as well was really helpful for me.
Oh, that's good. Yeah.
And you've been, you've been continuing to swim, you know,
with modifications, obviously. So in the pool for example, have
you had to do anything differently?
Yeah, I, well, the first thing was when I came back from Italy,
I'd actually dislocated my shoulder during the seizure and
ended up tearing muscles and my shoulder subscapular I think it
was. So that was quite good because
it meant I had to get back into swimming slowly.
So that was one thing the specialist had said, first of
all they said don't swim. And then they said, well, if
you're going to just really manage your energy and listen to
your body, so don't start off 1,000,000 miles an hour, you
know, just go slowly and also tell the lifeguard.
So if you're in the pool on your own, tell the lifeguard.
And I did start doing that, particularly at Freiburg and
they were awesome. So it's kind of a little bit
nervous at first because I thought they might turn around
and say you can't swim, like go, go get your clothes back on and
leave. But actually they quite often
stood at the end of the lane and kind of had a look at what I was
doing. So I felt really comfortable
with that. And the other thing I've done in
the pool is kept swimming with the squad, so and told people so
I told enough people that were particularly in my lane, like
you say, showing we're kind of in different lanes.
But most of the people that are in my lane know that I've got
epilepsy. So if I had a seizure in the
pool, they would notice hopefully, because I would stop
swimming obviously, and potentially start to start to
sink. So knowing what to do, just to
pull the person out, get them on the side of the pool and do the
right things from there. So the pool has been relatively
easy, although I've just taken it slowly and kind of figured it
out. As I say, the open water was
much harder to figure out. Yeah, just with the poll, you
mentioned when you had your seizure, you dislocated your
shoulder. So obviously there's a risk of
injury when you have seizures. So just for people listening, if
you're at the pool when you have a seizure, obviously pull you
out, but but also should people be sort of cushioning you to
make sure that you don't hit your head or anything like that?
Yeah, great question. So, so the reason I dislocated
my shoulder, and this is no offence to my partner, but he
was trying to sort of wrestle me into the recovery position along
with a couple of other people that were supporting me at the
time. That might seem like the right
thing to do, but actually it's the wrong thing to do if
someone's having a seizure. So what you should do is first
of all, get the person to safety.
Or if they're, you know, if I was already outside the pool,
like in the changing room, for example, just move objects away
that are potentially things that I could knock up against if I
was shaking in particular and get me to the ground.
So I'll probably be on the ground already if I've fallen
unconscious, but safely getting the person to the ground and
then actually leaving the person to seize up.
So it might be that, you know, my arms and legs are both moving
or I'm just moving a little bit, but don't touch the person while
the seizure is happening, which is really important to stop
things like tore muscles or dislocations of joints and
things. Because the nature of a tonic
clonic is that tonic clonic means that you're seizing up and
then your muscles are relaxing as well.
So if you catch someone halfway through, you can pretty quickly
injure them. But you're right to cushion the
heat. So the heat's the main thing.
So, you know, maybe Chuck a towel under the air or something
just to cushion the head. And then once the shaking stops
or the seizures over, if I was unconscious, you know, come back
to consciousness, but be really out of it.
So you might be what I was, for example, really unsure where I
was, you know, what's going on, where am I and I might be quite,
you know, wanting to get up and kind of walk away.
That actually just getting the person to sit somewhere quiet
and safe and comfortable. And then I wear a little wrist
kind of band on my smartwatch, which has anhi number, the
number to call in case of emergency sets.
That's a thing that means that whoever's with me doesn't
necessarily need to know who I am or who to contact that you
could quickly find that inflation.
And the other thing is if the seizure happens in a pool,
calling an ambulance is A and I think that's because obviously
the likelihood of drowning is much, much higher, but also
secondary drowning is an issue as well.
So I might have been hailed water.
So even though I'm looking OK and I'm kind of sitting up and
conscious and you still need to get checked out.
Afterwards, Thank you. And you sort of touched on
earlier that you're also starting to get back into the
sea. Do you want to talk about?
Yeah, the. Process around that and tell how
that works for you. Yeah.
Well, as I say, I looked far and wide for information about this,
tried to come up with all sorts of innovative ways to swarm.
Yeah. And in the end, I decided that I
needed to weigh out my own level of personal risk that I was
prepared to take, knowing that there was absolutely a high risk
that if I had a seizure, it would be really dangerous.
And the open water, because you're much further away from
help, obviously. But for my own kind of physical
mental health, it was really important to me to be able to
keep swimming and doing something that I enjoyed.
So I did definitely took a good couple of months off swimming in
the open water. And then I got back into it
slowly, just bobbing and dipping with friends kind of close to
shore. And then when I started open
water swimming again, two things I did I think have made the
biggest difference. So swimming only in shallow
water, so where I can stand up, but also the person who's
swimming with me can stand up, which means that if they needed
to Get Me Out of the water quickly, it's much easier to
kind of to do that. And the second thing is I swam
with a tether. So I think it's designed for
triathletes, swimmers maybe, where someone's supporting
another person and needs to be staying really close together
with that that person. So it's like a couple of waist
belts with a bungee cord between them.
And that just means that I know I've always got a swim buddy
right there so you don't end up getting separated.
But also, if I had a seizure and I needed help, the cord would go
touch pretty quickly. And so it's a signal to the
other swimmer I kind of need to stop and check out what's
happening with Kate. Yeah.
So those are the two things I've done.
Telling people you've got Eucalypse is the key thing.
And so, you know, Barb and team on both know, for example, say
they kind of keep an eye out for me as well, but particularly in
the water, having people that know that you've got the
condition that things might happen, but hopefully highly
likely it won't happen, but it could happen.
It's really cool that you can keep swimming because I mean,
it's, it's a big part of your life, right, For one thing.
And you know, for a lot of us, it's a, it's a social thing.
And it's also that connection with the water.
Yeah, yeah. So.
Yeah, I'm really pleased. Yeah, same to you.
But you can keep doing it. Yeah, I think because you do get
told lots of things you can't do when you get diagnosed with a
health condition. Epilepsy is no different to lots
of other ones, I'm sure. And initially I did focus a lot
on what I couldn't do and sort of, you know, you can start
thinking, gosh, this is terrible, you know, I can't
drive a car and I can't swim. But then for me, like once I've
figured out ways to adapt and to get around those things, it
actually made it quite interesting.
So some of the things that I've done now, like shallow swimming
is really fascinating because you see a lot more things under
the water, particularly around Island Bay and places that you
just don't see when you're quite far off.
Off land it's a different experience.
So weirdly this kind of being some advantages to the
adaptations. Even things like not driving, I
get lots of lifts for people and it's really lovely to have car
chats and catch up with people, which is another advantage
really, Yeah. Yeah, that's cool.
Yeah. I like how sometimes changes,
even though they're very unexpected, they can give you a
different perspective on things, right?
Or there can be unexpected benefits.
Yes. And I imagine a big part of
things would be rebuilding confidence.
Is that fair to say? Like, you know, having a medical
episode can be a bit of a knock. Yeah.
To sort of physical confidence and emotional confidence.
Yeah, definitely. And I think because I didn't
experience like I did experience obviously, but I didn't
experience seeing the seizure happen.
I think for those around me, it was much more traumatic in some
ways. And I've heard that from other
people who have seen someone have a seizure maybe at school
or at work or somewhere and they remember it really vividly.
So since I've heard epilepsy, it she, a lot of people have said,
Oh my gosh, you know, someone at school and you had a seizure and
we didn't know what to do. And it was.
So I think it must be quite terrifying for those people that
are observing it. And for me personally, there's a
degree of you don't quite feel as confident and invincible in
terms of what could happen to you.
But I do feel really confident actually that someone would come
and help. So that's that's kind of a cool
thing as well, just knowing that there's not much you can do for
yourself actually, when you're having a seizure, you're very
much reliant on people around you.
Yeah, yeah, I, I haven't had a major medical episode myself,
but I've had very close family members have major health
diagnosis. And I know that there can be
quite a roller coaster with emotions and just sort of
processing all the new information you get.
Especially like, like you said, the medical side can often focus
on what the person can't do, like what all the limitations
are. But I can't remember where I was
going. I had I had a point and a
question. That it's not entirely solution
focused as well about how to get around those things you can't
do. So the swimming thing, for
example, I've figured out, as I said, what I wanted to do.
And then travel's been really interesting as well because
that's a big part of my job work wise.
And I am, I will be back travelling internationally very
soon. But even just kind of working
through all the steps to figure out when am I safe to travel and
what do I need to do differently.
And yeah, so there, there's definitely a lot to think about
and it can get quite depressing if you start to kind of go down
that rabbit hole of all the things you can't do.
But I've had to be really patient and also just try to
focus on the things that are going well or the adaptations
that I I came back. So yeah.
So when I remembered what I was going to say, but yeah,
basically, like I know that when you're in the sort of immediate
aftermath of the diagnosis, you're just sort of taking it
day-to-day and sort of processing.
And then there can come a point where you start being able to
think ahead and maybe make goals, even if they're different
goals. And it sounds like you might be
sort of reaching that point if you're able to plan travel and
think about things you want to do in the future there.
Do you feel like there's somewhere you want to take your
swimming at the moment? Or are you just sort of happy
with things as the way they are and just see see sort of how it
goes? Yeah, yes, we're just so to the
first part of what you're saying.
The other thing with epilepsy is you end up on anti seizure
medication very quickly. So that's the first line of
defence and for some people that works and for some people it
doesn't. So luckily I seem to be in the
category of people that it does work for.
So it controls the seizures. But even getting used to that,
you know, like you say, you kind of have all these things you
have to get your head around. That's been quite an interesting
learning experience and trialing different medication that works
or doesn't work, dealing with side effects.
So you're needing to settle that down in terms of swimming, you
have kind of been pondering because normally I do have a
swim kind of goal or event on the horizon.
But this summer I've intentionally not put any events
in the diary and partly because I can't, but also just wanted to
kind of take it day by day and see what happens.
One goal I did have was just to try swimming in some different
locations in the shallow water, which has been really good.
You know, it's great to go with Bob to Plummeton the other day
went out to Titahi Bay with another friend, even went round
to the other side of Miramar Peninsula with a couple of
friends recently. And so lots of kind of
interesting swums where you can look at things underwater.
But I'd like to thank, you know, maybe by next summer, seizure
free obviously. And with medication working
well, I'd like to think I might be able to get back to some swum
events. I don't have any huge ones.
I think I just want to kind of we'll back up to confidence from
a distance perspective and yeah, I'll kind of take it a step at a
time and see what that might look like once I've got my head
around epilepsy and how it all works.
Yeah, that sounds very like a good idea.
And do you have swim events in New Zealand that were particular
favourites that you wouldn't mind doing again?
Yeah. Well, I've never done the one at
Blue Lake and so that was on my list to want to do at some
point. So I'd love to do that.
I've done their Run Your Toto swim a couple of times and
although it's a hard one, like it's an early start and it's
quite a long way that from on your Toto Island, which is up in
Auckland back to Saint Heliers Beach.
I'd quite like to have another go at that because it's a really
interesting, interesting swim to do.
I really enjoyed the fit and able swim adventure, so I'd love
to do another one of those at some point.
Yeah, I just think there's so many cool places to swim in New
Zealand and lots of places I've just not been to.
Even getting up to Lee or go to Ireland or somewhere and having
a look at what's going on there would be amazing.
So yeah, lots of things I'd love to do.
I know. Yeah, there are so many amazing
options, aren't there? Yeah, yeah.
The final question or not, not necessarily final, but it's
quite broad. But is there any sort of call to
action you would like people listening to this to do so?
I'm going to publish it on Epilepsy Awareness Day on the
26th. Is there anything you would like
people to do in terms of visiting the Epilepsy New
Zealand website or doing something in particular to sort
of raise awareness or support people with epilepsy?
The thing that I'd love people to do is just to become more
aware. And that might just be, yeah,
like you say, having a look on the Epilepsy New Zealand
website, if you know people who've got it, maybe just being
curious in the questions that you ask or looking seeking to
learn more about it. But I do think it's one of those
things with, because it's so invisible to other people, it is
a really hard one for people to get their head around.
And I don't necessarily like myself.
I don't necessarily need a lot of extra accommodations or
support at this point, but I have really appreciated those
people that are just a bit curious about it.
I've appreciated all the people who've gone, hey, you can't
drive, can I give you a lift somewhere?
Or, you know, do you need a swim buddy?
I think those things are really helpful.
So maybe it's thinking about what it is, getting a bit more
aware about it. And if there's someone in your
life that has epilepsy, I think having a chat to them and
perhaps asking them, you know, is there anything I can do
practically to support you? Those things will be great.
Yeah, that sounds good. Because sometimes people are
worried about saying the wrong thing, aren't they?
Like, I know I worry about saying the wrong thing to people
because we're not always taught what to say.
Yeah, I think so. And I've noticed some people
might say things like, are you feeling better now?
And it's like, oh look, I am like I'm feeling pretty good.
But you never be Sir 100%. I think it's the same as someone
who's maybe had a has a heart condition which is for the rest
of their life. Or a brain injury, right?
Or a brain injury, great example.
So you're managing it, but you're managing it as part of
who you are for the rest of your life.
So I think just being careful about the types of questions you
ask, but also the way you frame them is, is really helpful.
So that you're conscious of the person living with that
condition for the rest of their life, but that there are lots of
things they can do and and they're kind of working it out
for themselves. Yeah, and it hasn't been that
long since you were diagnosed, but do you feel that people are
growing an awareness of epilepsy and what it is over time or is
it too soon for me to ask? Yeah, I honestly, I don't know
the answer to that. I I mean, I have to say from my
own perspective, I had no idea. Like I didn't really know what.
I had no idea really what it was.
I, I thought I might have seen it in movies or in ATV show or
something, but I was probably quite scared of it.
So when I was told I was diagnosed, I thought, Oh my
gosh, I'll be having seizures every week and I'll be, you
know, I have to give up my job and I'll.
But in reality, actually for a lot of people, it's not at that
extreme level. It's something that's just
always there in the background. So yeah, I think it's it's one
of those things where if you don't know, then you won't
necessarily understand what it's all about.
And I don't think we can all be experts in every health
condition or medical thing that's out there.
But maybe even just me having it and talking about it would mean
that people might say, oh, I know Kate or I know of Kate or
I've heard Kate talking about it.
So I might go and just find out a bit more about it, which is a
great thing I think. Cool.
Well, but yeah, thank you, Kate. I really appreciate you coming
on the podcast to tell your story and to to help people
better understand epilepsy and swimming with the epilepsy.
I imagine like there'll be people listening to this podcast
who want to get in touch or have their own experiences.
So I'll put the, you know, podcasts, contact details and
the show notes, and I'll link to Epilepsy New Zealand, Yeah.
Is there anything else you want to mention that we haven't
covered yet? I guess one thing I do just want
to be careful to say is that what I've described as my
experience and also what I'm comfortable with.
So I'm not necessarily advocating that anyone with
epilepsy could get in the sea and just, you know, start
swimming or advocating that everyone can get control over
their seizures with medication. There are all sorts of different
types of epilepsy, and there's also different levels of risk
that people should or could be taking.
So I did want to be really careful to say that because
that's the other thing I've learned is that you have to just
be mindful of what works for you.
So I think that's important. Yeah.
And just, I think I've just been so grateful for all the people
that have offered help, whether they knew about epilepsy or not.
You know, they've just been really curious and really came
to help, which makes it so much easier.
That's great. Yeah, that's awesome.
OK. Yeah, that's a really good point
about also everybody's an individual and health and safety
disclaimer. And I mean, the thing was
medical professional. Yeah, sure.
And the thing with swimming is it doesn't necessarily mean.
Yeah, So I think you need to swim to enjoy it.
So it doesn't necessarily mean jumping in the water and
swimming exactly the same distance that I might have done
a year ago. It can be just as fun to be like
splashing around in the shallows and having a great time with
your friends. So I think, yeah, just accepting
what you can do and maybe doing that in a way that works for you
is such an important thing to remember.
Yeah, yeah, yeah. That is a really good way to sum
up the the episode and yeah. And the podcast in general.
Like we, yeah, we all connect with the water in different ways
and there are lots of different ways to find joy in it.
So, yeah. Thanks so much for your time
today, Kate. Yeah, you're welcome.
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