February 15, 2026 • 43 mins
Guest Mike Lee shared his inspiring journey of overcoming severe physical and mental health challenges.
Mike, a former firefighter, lifeguard, and ambulance officer, recounted his experiences with a rare autoimmune condition, IgG4-related disease, which affects only 1.8 people per million. His health struggles began in 2017 when he woke up with severe pain that led to a series of hospital visits. His condition caused his internal organs to attack his body, resulting in intense pain and confusion. Despite the rarity of his diagnosis, Mike was fortunate to encounter a doctor who recognised the symptoms and initiated the necessary tests.
As Mike navigated his diagnosis, he emphasised the importance of being an advocate for oneself in medical situations. He shared how he pushed for additional tests, which ultimately led to the discovery of two brain aneurysms. While unrelated to his autoimmune condition, the aneurysms posed a significant threat to his life. Despite the gravity of the situation, Mike and his wife responded with humour and resilience, which helped them cope with the emotional toll.
Mike underwent annual scans to monitor the aneurysms, and in 2024, one of them showed signs of potential rupture. Fortunately, advancements in medical technology allowed for minimally invasive surgery, sparing him from open brain surgery. Reflecting on his journey, Mike expressed gratitude for his autoimmune condition, as it inadvertently led to the discovery of the aneurysms before they became life-threatening.
Throughout the episode, psychotherapist Kyle MacDonald provided insights into how individuals process life-altering diagnoses, likening the experience to grief. He emphasised the importance of building strong relationships with medical professionals and seeking support from family, friends, or advocacy services to navigate the complexities of medical care.
Mike also shared how he became a medical advocate for others, including his father and a fellow hospital patient, by helping them understand medical jargon and empowering them to ask questions. He highlighted the significance of communication, emotional openness, and leaning on support networks during challenging times.
The episode concluded with a reminder to cherish life’s small moments and to seek help when needed.
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Episode Transcript
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Speaker 1 (00:08):
You're listening to a podcast from News Talk sed B.
Follow this and our wide range of podcasts now on iHeartRadio.
Speaker 2 (00:20):
Greetings and welcome. I'm Hamish Williams and you're listening to
the podcast version of The Nutters Club, a radio show
about mental health broadcast weekly on News Talk z B.
Each week we talk with people about their mental health
experiences in the hope that it might help you with
your own. The show is broadcast live on Sunday nights
(00:41):
on News Talk said B right across New Zealand and
around the world. Our guest this week is Mike Lee,
and he talks about dealing with the mental health challenges
that come from experiencing severe physical health conditions. For Mike,
it was an autoimmune condition and not one, but two
(01:01):
brain aneurysms. He shares what worked for him to never
lose hope even when the reality of situation was filled
with both pain and uncertainty. Let us know what you think,
as well as what you learn from our chat with
Mike on any of our social media platforms. Just search
for The Nutterers Club ENDZ and you'll find you're most
(01:22):
welcome to come join. Over one hundred and forty one
thousand fellow nutters. Let's get into this week's episode. Tell
us a little bit about yourself, Mike. Where were you born?
Where'd you grow up?
Speaker 3 (01:32):
I grew up in Mangay, South Auckland, went to ODU
College and sort of worked my way through this living
in the South and then headed on to wound up
as a volunteer firefighter up in Silverdale, and then became
one of the first career firefighters at Silverdale and moved
(01:55):
into the paid fire service after shortly after that. And yeah,
then doing a bit of ambulance stuff, doing a bit
of lifeguarding, living outdoors, really just enjoying being out there
doing stuff.
Speaker 2 (02:08):
Sounds like a really great life.
Speaker 3 (02:11):
Yeah, I'm pretty lucky.
Speaker 2 (02:13):
I mean the firefighting for a start, I mean, how
many years were you a volunteer firefighter?
Speaker 3 (02:17):
I was a volunteer fire fighter for about four or
five years, and then transitioning over to paid at the
same station. Fantastic, So all up seventeen years in the
fire service. Yeah, well that's that's an amazing contribution. Yeah
it was. It was a lot of fun too.
Speaker 4 (02:31):
Yeah.
Speaker 2 (02:31):
Good, And I'm glad to hear you say that, because
you know it can be it's it's not an easy job.
Speaker 3 (02:36):
No, I mean I was. I was eighteen years old,
and I still remember at vividly. One of the first
sort of bad fatal questions I went to was, you know,
half a dozen people dead in one family, and so
there was a kind of a rapid learning cave. But
all of these things sort of around at who we are.
(02:58):
I had a good friend who struggled with that particular crash,
but it didn't sort of seem to stick too much
for me, and it actually became a sounding for me
to be able to deal with the next one because
it wasn't as bad as that one.
Speaker 2 (03:12):
Do you think it gave you a different appreciation for
life hugely in what way?
Speaker 3 (03:18):
Well, I'd seen it end quite a bit, and so
that kind of rounded rounded things out for me a bit. Yeah,
it's sort of. It definitely takes a psychological toll on you,
but in a good way and a bad way kind
of all as a blend. And I wouldn't change it
(03:38):
for the.
Speaker 2 (03:39):
World in terms of how that affects you going forward.
You know, and you sort of understand your systems and
processes because I assume that you know, you would have
had you know, the ambulance at Saint John's would have
would have been a lot of you call outs and
things like that, so you sort of walked alongside the
medical profession anyway when you were doing that work, right.
Speaker 3 (03:59):
And and what I actually did is while I was
a volunteer fireman, I was also a volunteer lifeguard, but
I was also a volunteer ambulance officer as well.
Speaker 2 (04:07):
Oh right, well, there we get.
Speaker 3 (04:08):
I was doing all three of them just because I
was young, single, had plenty of time on my hands.
Speaker 2 (04:14):
And it seemed like a good idea at the time
type thing.
Speaker 3 (04:16):
Yep, and you know it was. You know, there were
definitely some very enjoyable times.
Speaker 2 (04:20):
Okay, So you had a reasonably well rounded basic medical
knowledge then, and you know things like first aid and
all the sort of stuff. And I've had a paramedic
explained to me, you know, being a paramedic is being
a bush doctor that you know, can can respond quickly.
Speaker 3 (04:38):
Yeah. Yeah, I was probably the guy carrying the bush
doctor's bag.
Speaker 2 (04:41):
Gotcha, gotcha. Okay, but then it comes to you and
you've ended up having what can only be described and
we'll get you to walk us through some of it.
But you've had an incredible string of medical diagnosis, all
of which could have potentially been quite fatal for you,
and yet here you are with us tonight. So when
(05:03):
did your physical health start becoming more of a more
of an you in your life, or more prevalent that
it was going to require your attention and time.
Speaker 3 (05:13):
It all basically started around twenty seventeen. Twenty seventeen, I
woke up one morning and I felt like I had
a bit of a crook back and tried to click.
It wouldn't click. And then I thought, all that pain's
a bit more than just the back, and so I
said to my wife, Hey, I think I need to
go to hospital. This is getting pretty painful. And she said, ah,
(05:37):
you know hospital, Shall we just go to White Cross?
So I popped in the car. You just saw the
kids out, because we had two young boys, and so
I jumped in the car. Thought I'll be fine. You know,
I'm a fine and I've done all these other things
in my life, so I can drive myself to go
and get checked out because it'll just be a niggle
of some sort. And yeah, dumbest car drive I ever did,
(05:58):
because part way there, I'm buckling over going. Oh, I'm
not sure I'm going to do the end of this trip.
But I got there and it was sort of the
start of it where my internal organs had started to
attack my body I've got to think called IgG fur
related disease, which we now know but didn't know it then,
(06:19):
and my body was basically just attacking certain parts of
my organs and the pain was pretty intense. So that's
sort of where it first started. And then yeah, then
it's sort of been the roller coaster of working through that.
It wasn't just one organ being attacked, there was several
(06:39):
being attacked. It was a rare disease. One point people
out of a million was the sort of numbers that
they talked about back in twenty seventeen, and so I
sort of I definitely fell back on the support of
my wife and family because it was this rare thing.
(06:59):
Nobody could really give me any answers, you know. The
surgical team were fantastic and we've since worked it through that. Actually,
thisicular illness was sort of first found I think early
two thousands, was sort of started as being pieced together
in Japan, but it was being written about in Japanese
so it kind of was going under the radar, and
(07:21):
you know, the the the hospital visits were getting more
and more frequent, they different organs were being affected, and
so the eventually they connected me up to what they
now what they call a multidisciplinary team. So because I've
(07:41):
got so many organs that are affected, they would at
the time they would have regular meetings about me so
that I didn't suffer the frustration that I first did
of have I got one thing or have I got
five things? And so that sort of headed down a
path of sort of getting getting to understand really what
(08:03):
this thing was. And that's kind of sort of where
it's at the first Yeah, we've.
Speaker 2 (08:09):
Got to take a break, but when we come back,
let's talk about how that diagnosis in its first stage
affected your life day to day, because you know, hey,
one day you're just running around doing whatever, and the
next just starting taking to learn a whole bunch of
different terms and a different way to actually live. Mike,
just take me back though, you know when you when
you were driving to the car and you were saying
(08:30):
you were feeling, you know, pretty pretty crocking and sort
of wondering what this pain was. Did you just walk
in there and they and they said, oh my, just
this neuro was the autoimmune four disease IG four. I
thought that this is IG four, you know, I mean,
you're you're one point eight out of a million people,
get it? I mean, did this all happen reasonably quickly
(08:51):
or was it a little bit more nuanced and drawn
out in that?
Speaker 3 (08:55):
I Ultimately, I actually think that I was pretty lucky
so that the doctor that I walked into, when I
went into the A and E there, I just was
explaining to them that I wasn't very signific and pain
and I don't know what it was, and it wasn't
normal for me, and I was just really quite fortunate
(09:16):
that particular night that one of the doctors that was
on had come to New Zealand fairly recently, I believe,
from the Philippines. And he said, well, you know, I'll
do a scan of that area because that's the pain
you're talking about, and we'll have a look at that.
And then when the scan came back, he was looking
at it and he said, well, I think you've got
(09:38):
this thing called mesenteric piniculitis. And so already I'm starting
to go back into my ambulance in five days and
going I need to start understanding some medical medical things
here and yeah, and he said, but it's really abnormal
because this would normally be a secondary presentation. I've never
seen it like this before, and so it was pure
(09:59):
fluke that I saw a doctor who had recently seen it.
So he did a whole lot of blood tests and
then gave me out some pain management, got me on
my way home, and so I got home and then
I got a phone call from my GP and he said,
you know, the blood test results are in and they're
(10:19):
not good. Make your way to hospital. And so, you know,
I owe my life to my GP. He's been phenomenal,
and so yeah, when I got into the hospital and
they were looking at the scans and talking and there was,
you know, lots of discussion from different people, and anyone
(10:44):
that's been in hospital, you'll get it. Doctors are doing
a fantastic job, don't get me wrong, but you'll be
getting a lot of medical jarg and chucked at you.
And it's and it's confusing, and you're also in the
stress of I'm in the situation I've ever been in before.
And then one of the doctors come in and he
starts talking about, you know, well with the scans just
(11:06):
showing these problems with you pancreas, and I drink a lot,
so that was not unexpected, but he was saying for
a different reason. And then the next doctor comes in
and says, you know, we are not too worried about
the lesions on your kidneys, but we'll have a look
at that. And I'm sitting there starting to kind of
freak out quite a lot, and my wife was with me,
(11:28):
and both of us are said, in goa, and if
I got one thing or three things, you know, what.
Speaker 2 (11:33):
Was the stress of that? Like for you though, because
you know you're coming in here right and you're having to,
like you said, process new terms, new words. But these
are high stakes because if you don't understand what's going on, Yeah,
this could be the difference between life or death. I mean,
what was your level of understanding at that time and
how did it affect you at that time?
Speaker 3 (11:53):
My level of understanding of this condition was near on zero.
But I didn't know of from from my background and
through other people in life that I knew of that
it had issues. You know, when people start talking about
lesions on things that can often mean the big sea,
and so you start to think those thoughts and then
(12:15):
you know they were not worried about the current level
of damage on your pancreas well. The only thing I
knew of that would damage to pancreas apart from alcohol
was pancreatic cancer. So now I've got two of those
chucked at me and my wife and I were, you know,
we're freaking out.
Speaker 2 (12:34):
What freaking out look like for you guys?
Speaker 3 (12:38):
Tears, just confusion, But ultimately we were just fairly lucky
that through some through some good friends, and through the
doctors sort of starting to communicate with each other, that
(12:59):
they then started to come together. Instead of being specialists
for the kidneys and a specialist for the pancreas, they
started sort of talking to me together about these things
that I've got, And so that was that was quite
huge and starting to take out that stress that you know,
I wasn't dealing Okay, yes I'm now dealing with three things,
(13:23):
but at least it's not have I got this, or
have I got this? Or have I got this? Therefore
it's unknown.
Speaker 2 (13:29):
So how did you deal with that then? In terms
of like what what did you do to try and
alleviate that that that stress that was, you know, having
such a major impact on you. You don't mean where
you did it affect your sleep at all? Or was
there you know, did you guys go for more do
some more exercise? What what was the idea that you
actually put into action to try and manage this.
Speaker 3 (13:50):
We well, I'm trying to think back actually, because I
think probably some of it was block it out. You know,
we would talk about it, sure, but you know, I
can't actually think back to what we did. I mean
immediately stopped drinking because my pancreas had problems, so and
(14:13):
I do like wine, and but you know that we
we did that. We were we were always going for
walks at night anyway, so we still kept doing those
things and just really being a solid family, you know,
letting the people around me help me if I was
(14:36):
having a bad day. Tears are fine. You know, I've
seen people that would bottle things up and that doesn't
often end well. So you know the stress of the unknown.
Really just communicating and being open and not being afraid
to show some emotion about it.
Speaker 2 (14:57):
So being able to have had a successful diagnosis really
and in a way that meant you could deal with
it was one thing, but then you you had a
completely different, and I believe unrelated another symptom pop up
for you. When did this happen and how did it
come about for you? And what was it?
Speaker 3 (15:19):
Yeah, so towards the end of twenty seventeen, twenty eighteen,
they were medicating me to try and get this thing
under control. That was an interesting time. The medication that
I was on basically meant I couldn't sleep or masses
of massive doses of this stuff, and with that I
(15:43):
was experiencing a lot of headaches. I then wound up
having another flare up of the condition, and so I
went to hospital. And so I'm in the hospital and
I I think one of the things that has sort
of helped me through this is being willing to be
an advocate for myself. You know. Once I learnt that
this was a rare thing, I knew that I needed
to do what I could to try and understand it
(16:05):
as a layman. And so I got into the hospital
on this particular trip and the surgeons came to see me.
They were looking at me and they scanned me again.
I've had so many CT scans and mri eyes, I'm
probably glow at night. But I said to them, look,
(16:26):
you've scanned everything else that I'm saying is hurting, and
I'm telling you of this pounding headache, and you've done
all the stroke tests, and I'm passing that I would
actually like you to scan my head before you let
me leave the hospital. And so they said, yep, we
don't think it's related, but we'll just do that because
it seems prudent and it'll make you happy bit more relaxed.
(16:49):
And so you know, the surgeons at that stage, they
were already starting to come on to the path of
realizing the patient was more than just the one condition.
And so they scanned my head. And I still remember
sitting with my wife, Justine, and we're sitting in my
bed and the neurosurgeon comes in and he says, look,
(17:11):
mister Lee, sorry to tell you this, but you've got
two aneurysms in your head. It's not related to your
other condition, but you've got these bubbles in your you know,
in the outer wall of your arteries in your brain
that makes you feel This is going to sound crazy,
but Justine and I laughed, and the neurosurgeon looked at
(17:33):
us and he said, I don't normally get that experience
that response from patients. And we just sent him and said, well,
what else could it be? We were already sort of,
I guess, applying a bit of black humor to it
that of course I'd have something else, you know, it
couldn't just be that one thing. And so, yeah, he
(17:55):
sat down and we went through the scenarios for the
I had two aneurysms, not just one. One on the
left side of my brain, one on the right.
Speaker 2 (18:05):
Okay, well you know, balance it out exactly.
Speaker 3 (18:07):
Why have one?
Speaker 2 (18:08):
Why have one two for the price of one scan?
Speaker 3 (18:11):
Yeah, indeed, And so they here sort of took me
through that, which was obviously it was scary as we
started to go through the detail of how they would
treat it. For these particular aneurysms, they were right in
the middle of my brain, and so the technology in
twenty seventeen was that they couldn't really treat that anyway
other than an open brain surgery. And so his advice was,
(18:37):
don't you know, We're just going to put you on
a program of scanning you every year and if we
see a change, then we'll revisit that decision, and so
that's what we did. And then in May twenty twenty four,
I went from my routine annual scan and got promptly
advised that the aneurysm and the right side of my
(18:58):
brain was changing shape, indicating a shape that's likely to burst.
Kind Of for anyone that doesn't know what an aneurysm,
it's like you get a bike tube and it's got
a bubble on the side of it and it's going
to pop. That's kind of what it is.
Speaker 5 (19:13):
And then you really don't want it to pop.
Speaker 4 (19:16):
Oh no, no, no.
Speaker 3 (19:18):
You know, they made it quite clear that the prognosis
for a failure of that outer wall wouldn't have necessarily
been a good outcome.
Speaker 2 (19:29):
So when you are faced with this, you know, and
I kind of I'd love that you had the response
that you did for a start, Like I just I
think that's actually really healthier when you say it's crazy,
but I think it's great. You know, we don't get
to choose how these things happen. They so you get
to choose the way that you respond, though, and then
(19:50):
when you are actually looking at the reality of it,
did you ever think at all that this this could
not go your way and that perhaps this could be
could be curtains.
Speaker 3 (19:59):
Absolutely, so whilst we laughed there and then when you
gave us that diagnosis, there were plenty of tears afterwards.
So you know, when you know that for this particular condition,
fifty percent of people get to make it to hospital
if it ruptures, and then of the fifty percent to
get to hospital, only fifty percent get to leave hospital,
(20:22):
and then of the fifty percent to get to leave hospital,
only five or so percent of that will have no
side effect. And so knowing that if this thing went
in my head it would probably not have a good outcome, yep,
how does.
Speaker 2 (20:41):
That change the way that you view yourself, the world,
your relationships when you're faced with your own mortality.
Speaker 3 (20:49):
I think it opens up your heart. I think you
really realize that we're here for a short time. Make
it a good time. You know, we're not necessarily here
for a long time.
Speaker 4 (21:06):
You know.
Speaker 3 (21:08):
I was loving diving, but having two things in my
head that we didn't know if it would affect it
or not. We weren't going to like just take that punt.
So diving, whilst it was a lot of fun, became
one of the things that I no longer do, but
you know, the you just have to try and sort
of find the positives out of something, you know, and
(21:29):
I really do think that there's a lot of negative
things that have happened to me, but the finding that
that's a tiny snippet of something positive can give you
the strength to get out of it.
Speaker 2 (21:43):
What was he positive thing about the brain and neurism, Well.
Speaker 3 (21:48):
The positive thing about my brain aneurysm was then actually
coming to the realization that my horrible, big, nasty autoimmune
condition had actually saved my life. So sounds crazy, but oh,
you're on the right show for that. So you know,
if I hadn't had the automun condition, I had absolutely
no symptoms from the aneurysms at all. And when they
(22:12):
went and did the first aneurysm operation, which I was
lucky enough, they could do it intravenously through the arteries,
technology had changed so they could get to that without
cracking my skull open, which is good because I've now
had two of them. But the you know, just the
(22:37):
I think it's it's just really it grounds you.
Speaker 2 (22:41):
You, Yeah, you suddenly start having a great appreciation for
all the small things, right.
Speaker 3 (22:50):
Yep, absolutely yeah, and and I think it's it's just
so important for people to let their friends and family
know where they're at mentally with stuff like this, because
if you lock yourself away, it can become all consuming.
Speaker 2 (23:08):
We're going to take a break and we come back.
We'll bring Kylon to actually talk to us a little
bit about how we can manage these kind of diagnosies
in our life as we're going forward and get his
take on it as well. But we'll continue also chatting
with Mike here tonight on the Nutters Club. Back soon.
Speaker 1 (23:25):
This is the Nutters Club thanks to New Zealand on
air on News talksz'd be.
Speaker 2 (23:30):
All right, welcome back to the Nutters Club. We've of
course been talking with our guest tonight, Mike about his
medical diagnosises the effect on his mental health as well
as his physical But then Cole, look, you know you've
been sitting there very patiently listening for all this when
you know Mike's been talking about, you know, some of
his reactions and then kind of having like a very
(23:52):
pragmatic and practical approach to it. Is that something that's
normal for people or is there one way that people
tend to respond to life threatening diagnosises more so than others.
Speaker 5 (24:06):
Yeah, I mean, I think I think the easiest way
to think about it is the technical terms we talk
about adjustment. But actually I think it's like grief. You know,
most people know have known someone who's died or knows
someone who has lost someone close to them, and so
they have some sense of what that process looks like.
I think the thing is that when we get a
(24:27):
life altering or life changing diagnosis, what we're doing this
sounds kind of weird, is we're kind of grieving the future.
Speaker 3 (24:33):
Like we all have.
Speaker 5 (24:34):
The slightly unrealistic denial of our mortality version of our
story where we just sort of go on forever and
you know, maybe we know at some point we're going
to die, but you know, life will just sort of
remain unchanged and then at some point will just disappear
in a puff of smoke. Because we're sort of hard
wired to deny mortality. It kind of keeps us getting
out of bed in the morning. You don't want to
do well on it too much, otherwise you end up
(24:56):
doing a job like mine. So, you know, I think
it is about grief, and it is about making that
adjustment to thinking about how is our you know, life
going to be different, whether it's you know, losing diving,
or you know, having to make different decisions about our
day to day life, or actually just all of a
sudden have to learn about these conditions and you know,
(25:18):
accept the reality that changes are going to have to happen.
And of course you asked how to different people respond? Well,
I think, just like grief, different people respond differently, right.
I mean, what I heard you from you, Mike is
you had enough knowledge that you could quite quickly build
on that. But it also sounds to me like you're
someone who who gains reassurance from understanding and knowledge. Some
people you know, and you know, different strokes for different folks.
(25:41):
So people prefer to remain relatively ignorant, to let the
experts in their life handle it and just know, I
only know what they need to know and everything in between, right,
And some people might be very private, and some people
might feel free talking quite publicly about it. So, just
like grief and loss, I think there's a whole range
of things. But I think the main thing is to
make sure that we accept it reality and stay engaged
(26:02):
with the science and the treatment that we need to do.
Because I think when these things can go sideways is
when we just go so I don't want to know
about any of it. And we stopped taking the pearls,
or we stopped talking to the doctors, or we stopped
going to the appointments, because actually the distress of that
is too harder. We solve it through avoidance.
Speaker 2 (26:18):
What I really liked about your story there, Mic, is
that you talked about actually doing some of your own
work and being really active in it and pushing them
back away, but on the doctors, not in a disrespectful
way or anything like that, but you know, this is
your life, so it's actually you know, if you're going
to ask questions at any point in your existence, now
(26:40):
is a good time to do it. Which reminded me.
You know, there's a bit of an old saying, you know,
doctor knows best, and they do, like you know, I
don't think any of us in this room would imagine
that we know more than you know medical doctors, but
sometimes they just need a little bit more encouragement support.
And that you said that Mic was recognizing and understanding
the process as much of anything, But did you when
(27:02):
you're actually going through that, and when you were doing
that research, did you actually feel more re assured that
there was hope, that you know, there was something else
out there? Was that what was driving you?
Speaker 3 (27:14):
I think it was, you know, I think sort of
the I could either like you were saying, I could
have sat there and just let it happen to me.
But on you know, my job and my brain is
around processing data and innovation, and so I just couldn't
not and so it'd have been like switching my brain
(27:36):
off literally, and and so I dived into some of
that stuff. I did some research on my own. I
took it to my GP, showed him the research that
I had done. He was open to seeing it. You know,
I was one of the unlucky people that was having
(27:56):
negative side effects to the medications that are trying to
treat me with that. Some of them were pretty bad
side effects, you know, internal bleeding, spleen, doubling in size,
live a stone to pack up, And I'm thinking, if
my lover is going to pack up, I'll choose the wine.
Thank you very much.
Speaker 2 (28:12):
Fair enough, I'm going out with a nice central target penut.
Speaker 5 (28:17):
But actually what you're describing there is something really important too.
Just to jump in because we talk about this a
lot on the show, So you know, some people will
sort of think, you know, well, I don't want to
be a difficult patient. I don't want to question the doctor,
or you know, I don't want I feel too nervous
to share my thoughts with them. But actually it comes
down to the relationship. And one of the most important things,
particularly with your GP, and it applies to therapists and
(28:39):
other people you see regularly, is to build that good relationship,
you know, that mutual respect. And if you have that
mutual respect, then you can bring your ideas and a
good doctor will listen to them and consider them.
Speaker 3 (28:49):
And I absolutely second that. So the you know, the
way I didn't hit them combatively, you know you're doing
it wrong. I want to do it this way. It
was really just sort of saying to them, you know,
this seems complex, I'm confused. Can you explain it more?
And I really do I do fine, because I've seen
(29:11):
a lot of doctors that when you open with them
how you're feeling, they'll actually take a bit longer and they'll
explain it a bit more. And if you're starting to
sort of really engage with your condition, that can really
help them treat you because they're now seeing a more
rounded picture.
Speaker 2 (29:30):
Let's go to the lines. Mark, good morning to you.
Speaker 4 (29:34):
Oh, I thank you for taking my call. I was
just going to say, when you first came on, you
were talking about a diagnosis, and I think that the
pain and the body who've got a remarkable ability to recover.
That's what I've just discovered. I'll walk about five k's
(29:56):
every day when I can, and I haven't needed for
about forty years now.
Speaker 2 (30:02):
Yeah, So five k's and you've done that how many
every day? For how long? Mark?
Speaker 4 (30:09):
Oh? Quite a long time since the late eighties. I'm
sixty six now, sixty five.
Speaker 2 (30:19):
And when you started doing and what were some of
the changes that you noticed in yourself? You know, once
you'd been doing it for a while, because you know,
you start doing these things, thinking was more positive.
Speaker 4 (30:30):
Yes, and I would sleep better. I was able to
work better. And I went into partnership with my doctor
and we set up a business and I did that
for a long time. But my father had tuberculosis. He
was a pilot bomb of pilot and they found the
only thing that would cure them was bed rest and
(30:50):
also heavy medication. And I think they discovered in hospitals
that people can really recover and make a group fist
of things.
Speaker 2 (31:01):
Yeah, so physical activity consistently, Kyle, is this something that
we know can have a positive out out look for
people outcomes?
Speaker 5 (31:10):
Oh, I mean it's fair to say it's probably always
a good idea, but it certainly can shift our move
and you know, some people find that it's nothing that
works for them. I guess the main thing is that
to always be trying to do, you know, more than
your creating good habits and doing more than you did
yesterday is always a good idea.
Speaker 2 (31:29):
So small and consistent. When's the race at the of life?
Speaker 4 (31:32):
Right?
Speaker 5 (31:33):
Absolutely?
Speaker 2 (31:34):
Yeah, fantastic, Mark, That's a really great one. Thanks so
much for sharing.
Speaker 4 (31:38):
That's all right. I had we had a surgeon friend.
I lived in m you are with my mother for
a thirty years and a surgeon friend came to came
to visit and he said, look, you've had this diagnosis
of schizophrenia. Please don't go jogging. So I just walk.
I walk everywhere and get the busy.
Speaker 2 (31:57):
Brilliant. Whatever works.
Speaker 4 (32:00):
Thanks all of this Fear program.
Speaker 2 (32:02):
Thanks very much.
Speaker 3 (32:03):
Mark.
Speaker 4 (32:03):
Go Well.
Speaker 2 (32:05):
You were saying, Mike, you know, walking in something that
you've done quite a.
Speaker 3 (32:08):
Bit of yep walking. It's just fantastic. It does get
Like Mirke was saying, it gives you a chance to
reset your brain, get off your device, and just you
go out there and see what's happening in the world
around you. And you can see things that just snake.
You know, there might be a bird flying in a tree,
it might be a bumblebee or whatever. It might be
(32:30):
a dog doing something stupid. My wife and I were
driving today and this guy is walking his dog and
the dog stops, wouldn't move. The guy keeps walking and
the dogs just watching the retract, delete, extend. The guy
eventually stops and looks back at the dog and he
works out the dog wants to cross the road. So
we're sitting at the lights and the dog. The guy
gets back to his dog and he points at the crossing.
(32:53):
The dog stands on his hind legs and hits the button.
Way yeah, no way, yep, there was. We saw it
for our own eyes and we absolutely yeah, that's very
well trained. But you know, you're out there walking, you
see random things and it can just change your mood.
It can make you just forget about something that was
really bothering you.
Speaker 2 (33:14):
The things we see when we go on a walk.
So it wasn't always just about you though, with some
of the the medical experiences that you had, and actually, Mike,
you ended up having a couple of experiences where you
inadvertently became a medal medical advocate for others. How did
this come about and what was it that you ended
(33:36):
up experiencing with this?
Speaker 3 (33:39):
Yeah, thanks, Amris, so way before I got my own diagnosis.
My dad's he's still with us today, but he's you know,
he's pretty frail. He's in the care of hospice, so
he's sort of, you know, not got he's got more
days behind him than he has ahead of him. But
(33:59):
I was sitting with him at hospital and the doctors
were coming in and talking to him about several things,
and I could see that he was confused, you know,
the medical jargon and just the stress of you know,
being in the hospital and he just wasn't getting it.
And then the doctors would sort of leave and he
(34:21):
would look at me blankly and I'd be like what,
and he said, well, I don't know what they said,
you know, I don't even didn't even really hear what
they said, and I said, well, they you know, I'm
not a doctor, but I was able to sort of
say to Dad, you know that they're meaning this, They're
saying these things, we need to start looking at these
(34:42):
as treatment options whatever. And so I wound up being
his advocate. And my dad's got a whole range of
complex health conditions COPD so's airways, he's had two strokes,
he's had cardiac issues, he's had circulatory issues, he's very frail.
It's a very complex patient. And so the doctors, you know,
(35:06):
I would then articulate to them all of his things.
And so we were sitting in the hospital one day
and I was doing that with Dad, and in the
same room the dad was in, there was another family,
lovely simone lady, and she was sort of hearing me
(35:27):
talking to Dad after the doctors had left, and so
she said, come and talk to me. So I went
and sat with her and sort of, you know, she goes,
where are you guys from, and wanted to know a
bit about us. And then I was sitting back with
Dad and the doctors came back in to talk to her.
And so it's one of those open planned rooms and
(35:48):
it's not that your eavesdropping, but you can't kind of help.
It's like, you know, and when they when we hear
certain things, maybe it triggers that I kind of wanted
to listen into that because it sounds pretty scary or interesting.
And so after the doctors left, she was like talking
(36:08):
to her family saying, you know, what did that mean?
And it wasn't that she didn't want to ask the
doctors a question. I think she was just shell shocked
at being in hospital like most people. And so I'd
overheard her talking to her son asking these questions and
I said, well, you know, this is the sort of
(36:31):
things that the doctor said. You know, and I said
to her quite clearly, I'm not a doctor, but this
is what this type of thing means, and sort of
just in normal language, and she went, oh cool, So
you know, come and tell me more. So when I
sat with her again and we talked a bit more
and built her a relationship. And I think this really
(36:51):
comes down to, as Kyle was saying before, the relationship
side of it. So I inadvertently built a relationship with
this lady. And so she starts telling me all the
things that have been ailing her for a long time,
and then anyway, the doctors come back and to have
another chat with her, and they said, you know, you
need to go and sit back with your father because
(37:12):
we need to talk to this lady. And this she
turns around and goes nope, boy stays And so the
doctors looked at me and they're like, what the heck
has happened here? And so they told her all the
things that they were wanting to talk to her about,
and then she would look at me and I'd ask
a couple of questions and then the doctors, and it
(37:34):
actually started to change the relationships that she was having
with her doctor, because then she felt comfortable that she
could ask a question. And so that patient advocacy think
can then empower people that are mentally struggling. You know,
are they trying to hide it, are they trying to
not feel stupid or all of those things. And so
(37:54):
because they hear somebody else sort of pose a question
or speak up on their behalf, they then start to
build that thought process that actually, I can do this too,
And then that interaction actually started to engage the doctors
in a different way with her. You know, I noticeably
saw over the time that dad was in hospital because
were there for like a week or so, the doctors
(38:17):
were talking to her more and more clearly every single day,
and she was asking questions every single day.
Speaker 2 (38:24):
Kle, I'm sure there's a lot of different reasons, but
you know, why do people sometimes not ask questions of
their medical advisors, of their of their doctors. You know,
why do some people shy away from, you know, wanting
to even engage in that process.
Speaker 5 (38:41):
Well, there's an old study that they did, and a
lot of medicols now do this as part of their training,
which is they get doctors to actually lie down in
a bed and be talked at by experts and you know,
have the experience of being a patient. Because one of
the things that and again this is coming background to
answer your question, one of the really obvious answers to
that is if you're in bed and you're in one
(39:03):
of those skimpy little nightgown things, and you're feeling poorly
and you're having trouble, and you haven't a decent meal
for a couple of days, and you're on your own
and you're surrounded by strangers, and someone comes in and
dumps a whole lot of information on you. You're probably not
going to process it that well anyway for a start, right, well,
when you put it that way, But also some people
have to struggle to speak up generally in their lives.
(39:26):
I mean, we've talked to thousands probably on this show
over the years, but it's actually quite an assertive thing
to be able to ask a doctor to stop and
explain something. I mean, and to some extent, you know,
it also depends on how much we just blindly trust
authority or how much knowledge we actually have to start with.
So I think you know, even to ask a question
imployes that you're understanding enough about what you're being told
(39:49):
to ask a question about it, right, I mean, if
it's all Greek to me, then you don't even know
where to start. So I think there's lots of answers
to that question, but they do come down to being
and of course, you know, all due respect to doctors
who do a tough job, but some doctors are also
better at explaining stuff to patients and others. We have
(40:09):
to accept that. So yeah, but being able to find
ways to have those conversations are already important. And of
course the first step, like we've just heard Mike describe
and like we talk about a lot on the show,
is get someone else who's well, who's feeling onto it
and they're sitting in a chair rather than a bed.
That's a good start in terms of actually being able
to ask those questions.
Speaker 3 (40:30):
Now, my advocate was my wife, right, So even though
I've able to articonate this stuff now, back at that time,
it wasn't me sitting there processing it. It was her
And then we would talk and she would tease things out.
It was you know, and that's why, you know, I
got to where I am now because of that support network.
(40:53):
You know that, because even though when they're talking to
you and now I'm obviously I understand my condition a
lot more, but back then my wife would be you know,
what does that mean? Explain that because I'm sitting there
shell shop right, Yeah, exactly.
Speaker 5 (41:09):
The emotions are getting in the way because of course.
Speaker 3 (41:11):
And it's seriously, when you're the patient, it's just coming
at you. Yeah, and the people around you are the
ones that are picking up the pieces.
Speaker 4 (41:21):
Yeah.
Speaker 5 (41:21):
I mean to give a really simple example, hate mish.
I think most people, if for instance, they're getting a
really terrible diagnosis like a terminal potentially like cancer, no
one hears anything after cancer, right, you know that's really
normal because that's what when the emotions kick in and
all of a sudden we can't think straight at all.
Speaker 2 (41:37):
So so, what though, can I do if I don't
have a mic that just happens to be in my
in my wardroom, or I don't have Mike's wife. What
are the options open to me? Is there anyone else
there that could potentially help me?
Speaker 5 (41:52):
Well, most people have a phone these days, they can
record it. You can ask the doctor's permission just to
record the information that they're giving to you so you
can go back and listen to it later. You can
write stuff down, that's another good looking, straightforward strategy, and
if they are doing notes, and also ask for a
copy of the notes, not because you want to snoop
through things, but again it's a way to actually get
the information written form and ask nurses. Particular, if you're
(42:17):
in a hospital ward, keep going back to the nurses
because they'll be turning up more frequently for a start, right,
so you could say, hey, look, I didn't understand that
thing that he said, what's this condition? And they that
would either be able to answer your question or they
may be able to go get the doctor to come
back at some point.
Speaker 2 (42:30):
And also too like if you actually want to have
an advocate person there there is an advocacy service.
Speaker 5 (42:36):
Yeah, there is. In most hospitals will have support services
that you can access, you know. I mean a lot
of the advocacy services are really useful, particularly if you're
trying to navigate a tricky situation. But I think in
the first instance is ideally friend or family member to
help you fundamentally just kind of think straight and make
sure you're getting all the information down.
Speaker 2 (42:57):
That's it for this episode of The Nutters Club, thanks
to our incredible guest Mike Lee, as well as psychotherapist
Kyle McDonald. If you liked what you heard and think
it might help someone out there there, please share this
episode on your own channels or with family and friends.
And if you ever want to be part of the show,
then give us a call or text. When we broadcast
(43:17):
live on News Talk SETB eleven pm Sunday nights, New
Zealand standard time. Check out newstalkzb dot co dot z
for local frequencies or a link to the live stream.
A big thanks to New Zealand on Air for their
ongoing support and making the show. Take care and always
remember that the world's a better place with you in it.
(43:39):
Life it isn't easy, it is, however, with it.
Speaker 1 (43:53):
For more from News Talk SEDB, listen live on air
or online, and keep our shows with you wherever you
go with our podcasts on iHeartRadio.
You're listening to a podcast from News Talk sed B.
Follow this and our wide range of podcasts now on iHeartRadio.
Speaker 2 (00:20):
Greetings and welcome. I'm Hamish Williams and you're listening to
the podcast version of The Nutters Club, a radio show
about mental health broadcast weekly on News Talk z B.
Each week we talk with people about their mental health
experiences in the hope that it might help you with
your own. The show is broadcast live on Sunday nights
(00:41):
on News Talk said B right across New Zealand and
around the world. Our guest this week is Mike Lee,
and he talks about dealing with the mental health challenges
that come from experiencing severe physical health conditions. For Mike,
it was an autoimmune condition and not one, but two
(01:01):
brain aneurysms. He shares what worked for him to never
lose hope even when the reality of situation was filled
with both pain and uncertainty. Let us know what you think,
as well as what you learn from our chat with
Mike on any of our social media platforms. Just search
for The Nutterers Club ENDZ and you'll find you're most
(01:22):
welcome to come join. Over one hundred and forty one
thousand fellow nutters. Let's get into this week's episode. Tell
us a little bit about yourself, Mike. Where were you born?
Where'd you grow up?
Speaker 3 (01:32):
I grew up in Mangay, South Auckland, went to ODU
College and sort of worked my way through this living
in the South and then headed on to wound up
as a volunteer firefighter up in Silverdale, and then became
one of the first career firefighters at Silverdale and moved
(01:55):
into the paid fire service after shortly after that. And yeah,
then doing a bit of ambulance stuff, doing a bit
of lifeguarding, living outdoors, really just enjoying being out there
doing stuff.
Speaker 2 (02:08):
Sounds like a really great life.
Speaker 3 (02:11):
Yeah, I'm pretty lucky.
Speaker 2 (02:13):
I mean the firefighting for a start, I mean, how
many years were you a volunteer firefighter?
Speaker 3 (02:17):
I was a volunteer fire fighter for about four or
five years, and then transitioning over to paid at the
same station. Fantastic, So all up seventeen years in the
fire service. Yeah, well that's that's an amazing contribution. Yeah
it was. It was a lot of fun too.
Speaker 4 (02:31):
Yeah.
Speaker 2 (02:31):
Good, And I'm glad to hear you say that, because
you know it can be it's it's not an easy job.
Speaker 3 (02:36):
No, I mean I was. I was eighteen years old,
and I still remember at vividly. One of the first
sort of bad fatal questions I went to was, you know,
half a dozen people dead in one family, and so
there was a kind of a rapid learning cave. But
all of these things sort of around at who we are.
(02:58):
I had a good friend who struggled with that particular crash,
but it didn't sort of seem to stick too much
for me, and it actually became a sounding for me
to be able to deal with the next one because
it wasn't as bad as that one.
Speaker 2 (03:12):
Do you think it gave you a different appreciation for
life hugely in what way?
Speaker 3 (03:18):
Well, I'd seen it end quite a bit, and so
that kind of rounded rounded things out for me a bit. Yeah,
it's sort of. It definitely takes a psychological toll on you,
but in a good way and a bad way kind
of all as a blend. And I wouldn't change it
(03:38):
for the.
Speaker 2 (03:39):
World in terms of how that affects you going forward.
You know, and you sort of understand your systems and
processes because I assume that you know, you would have
had you know, the ambulance at Saint John's would have
would have been a lot of you call outs and
things like that, so you sort of walked alongside the
medical profession anyway when you were doing that work, right.
Speaker 3 (03:59):
And and what I actually did is while I was
a volunteer fireman, I was also a volunteer lifeguard, but
I was also a volunteer ambulance officer as well.
Speaker 2 (04:07):
Oh right, well, there we get.
Speaker 3 (04:08):
I was doing all three of them just because I
was young, single, had plenty of time on my hands.
Speaker 2 (04:14):
And it seemed like a good idea at the time
type thing.
Speaker 3 (04:16):
Yep, and you know it was. You know, there were
definitely some very enjoyable times.
Speaker 2 (04:20):
Okay, So you had a reasonably well rounded basic medical
knowledge then, and you know things like first aid and
all the sort of stuff. And I've had a paramedic
explained to me, you know, being a paramedic is being
a bush doctor that you know, can can respond quickly.
Speaker 3 (04:38):
Yeah. Yeah, I was probably the guy carrying the bush
doctor's bag.
Speaker 2 (04:41):
Gotcha, gotcha. Okay, but then it comes to you and
you've ended up having what can only be described and
we'll get you to walk us through some of it.
But you've had an incredible string of medical diagnosis, all
of which could have potentially been quite fatal for you,
and yet here you are with us tonight. So when
(05:03):
did your physical health start becoming more of a more
of an you in your life, or more prevalent that
it was going to require your attention and time.
Speaker 3 (05:13):
It all basically started around twenty seventeen. Twenty seventeen, I
woke up one morning and I felt like I had
a bit of a crook back and tried to click.
It wouldn't click. And then I thought, all that pain's
a bit more than just the back, and so I
said to my wife, Hey, I think I need to
go to hospital. This is getting pretty painful. And she said, ah,
(05:37):
you know hospital, Shall we just go to White Cross?
So I popped in the car. You just saw the
kids out, because we had two young boys, and so
I jumped in the car. Thought I'll be fine. You know,
I'm a fine and I've done all these other things
in my life, so I can drive myself to go
and get checked out because it'll just be a niggle
of some sort. And yeah, dumbest car drive I ever did,
(05:58):
because part way there, I'm buckling over going. Oh, I'm
not sure I'm going to do the end of this trip.
But I got there and it was sort of the
start of it where my internal organs had started to
attack my body I've got to think called IgG fur
related disease, which we now know but didn't know it then,
(06:19):
and my body was basically just attacking certain parts of
my organs and the pain was pretty intense. So that's
sort of where it first started. And then yeah, then
it's sort of been the roller coaster of working through that.
It wasn't just one organ being attacked, there was several
(06:39):
being attacked. It was a rare disease. One point people
out of a million was the sort of numbers that
they talked about back in twenty seventeen, and so I
sort of I definitely fell back on the support of
my wife and family because it was this rare thing.
(06:59):
Nobody could really give me any answers, you know. The
surgical team were fantastic and we've since worked it through that. Actually,
thisicular illness was sort of first found I think early
two thousands, was sort of started as being pieced together
in Japan, but it was being written about in Japanese
so it kind of was going under the radar, and
(07:21):
you know, the the the hospital visits were getting more
and more frequent, they different organs were being affected, and
so the eventually they connected me up to what they
now what they call a multidisciplinary team. So because I've
(07:41):
got so many organs that are affected, they would at
the time they would have regular meetings about me so
that I didn't suffer the frustration that I first did
of have I got one thing or have I got
five things? And so that sort of headed down a
path of sort of getting getting to understand really what
(08:03):
this thing was. And that's kind of sort of where
it's at the first Yeah, we've.
Speaker 2 (08:09):
Got to take a break, but when we come back,
let's talk about how that diagnosis in its first stage
affected your life day to day, because you know, hey,
one day you're just running around doing whatever, and the
next just starting taking to learn a whole bunch of
different terms and a different way to actually live. Mike,
just take me back though, you know when you when
you were driving to the car and you were saying
(08:30):
you were feeling, you know, pretty pretty crocking and sort
of wondering what this pain was. Did you just walk
in there and they and they said, oh my, just
this neuro was the autoimmune four disease IG four. I
thought that this is IG four, you know, I mean,
you're you're one point eight out of a million people,
get it? I mean, did this all happen reasonably quickly
(08:51):
or was it a little bit more nuanced and drawn
out in that?
Speaker 3 (08:55):
I Ultimately, I actually think that I was pretty lucky
so that the doctor that I walked into, when I
went into the A and E there, I just was
explaining to them that I wasn't very signific and pain
and I don't know what it was, and it wasn't
normal for me, and I was just really quite fortunate
(09:16):
that particular night that one of the doctors that was
on had come to New Zealand fairly recently, I believe,
from the Philippines. And he said, well, you know, I'll
do a scan of that area because that's the pain
you're talking about, and we'll have a look at that.
And then when the scan came back, he was looking
at it and he said, well, I think you've got
(09:38):
this thing called mesenteric piniculitis. And so already I'm starting
to go back into my ambulance in five days and
going I need to start understanding some medical medical things
here and yeah, and he said, but it's really abnormal
because this would normally be a secondary presentation. I've never
seen it like this before, and so it was pure
(09:59):
fluke that I saw a doctor who had recently seen it.
So he did a whole lot of blood tests and
then gave me out some pain management, got me on
my way home, and so I got home and then
I got a phone call from my GP and he said,
you know, the blood test results are in and they're
(10:19):
not good. Make your way to hospital. And so, you know,
I owe my life to my GP. He's been phenomenal,
and so yeah, when I got into the hospital and
they were looking at the scans and talking and there was,
you know, lots of discussion from different people, and anyone
(10:44):
that's been in hospital, you'll get it. Doctors are doing
a fantastic job, don't get me wrong, but you'll be
getting a lot of medical jarg and chucked at you.
And it's and it's confusing, and you're also in the
stress of I'm in the situation I've ever been in before.
And then one of the doctors come in and he
starts talking about, you know, well with the scans just
(11:06):
showing these problems with you pancreas, and I drink a lot,
so that was not unexpected, but he was saying for
a different reason. And then the next doctor comes in
and says, you know, we are not too worried about
the lesions on your kidneys, but we'll have a look
at that. And I'm sitting there starting to kind of
freak out quite a lot, and my wife was with me,
(11:28):
and both of us are said, in goa, and if
I got one thing or three things, you know, what.
Speaker 2 (11:33):
Was the stress of that? Like for you though, because
you know you're coming in here right and you're having to,
like you said, process new terms, new words. But these
are high stakes because if you don't understand what's going on, Yeah,
this could be the difference between life or death. I mean,
what was your level of understanding at that time and
how did it affect you at that time?
Speaker 3 (11:53):
My level of understanding of this condition was near on zero.
But I didn't know of from from my background and
through other people in life that I knew of that
it had issues. You know, when people start talking about
lesions on things that can often mean the big sea,
and so you start to think those thoughts and then
(12:15):
you know they were not worried about the current level
of damage on your pancreas well. The only thing I
knew of that would damage to pancreas apart from alcohol
was pancreatic cancer. So now I've got two of those
chucked at me and my wife and I were, you know,
we're freaking out.
Speaker 2 (12:34):
What freaking out look like for you guys?
Speaker 3 (12:38):
Tears, just confusion, But ultimately we were just fairly lucky
that through some through some good friends, and through the
doctors sort of starting to communicate with each other, that
(12:59):
they then started to come together. Instead of being specialists
for the kidneys and a specialist for the pancreas, they
started sort of talking to me together about these things
that I've got, And so that was that was quite
huge and starting to take out that stress that you know,
I wasn't dealing Okay, yes I'm now dealing with three things,
(13:23):
but at least it's not have I got this, or
have I got this? Or have I got this? Therefore
it's unknown.
Speaker 2 (13:29):
So how did you deal with that then? In terms
of like what what did you do to try and
alleviate that that that stress that was, you know, having
such a major impact on you. You don't mean where
you did it affect your sleep at all? Or was
there you know, did you guys go for more do
some more exercise? What what was the idea that you
actually put into action to try and manage this.
Speaker 3 (13:50):
We well, I'm trying to think back actually, because I
think probably some of it was block it out. You know,
we would talk about it, sure, but you know, I
can't actually think back to what we did. I mean
immediately stopped drinking because my pancreas had problems, so and
(14:13):
I do like wine, and but you know that we
we did that. We were we were always going for
walks at night anyway, so we still kept doing those
things and just really being a solid family, you know,
letting the people around me help me if I was
(14:36):
having a bad day. Tears are fine. You know, I've
seen people that would bottle things up and that doesn't
often end well. So you know the stress of the unknown.
Really just communicating and being open and not being afraid
to show some emotion about it.
Speaker 2 (14:57):
So being able to have had a successful diagnosis really
and in a way that meant you could deal with
it was one thing, but then you you had a
completely different, and I believe unrelated another symptom pop up
for you. When did this happen and how did it
come about for you? And what was it?
Speaker 3 (15:19):
Yeah, so towards the end of twenty seventeen, twenty eighteen,
they were medicating me to try and get this thing
under control. That was an interesting time. The medication that
I was on basically meant I couldn't sleep or masses
of massive doses of this stuff, and with that I
(15:43):
was experiencing a lot of headaches. I then wound up
having another flare up of the condition, and so I
went to hospital. And so I'm in the hospital and
I I think one of the things that has sort
of helped me through this is being willing to be
an advocate for myself. You know. Once I learnt that
this was a rare thing, I knew that I needed
to do what I could to try and understand it
(16:05):
as a layman. And so I got into the hospital
on this particular trip and the surgeons came to see me.
They were looking at me and they scanned me again.
I've had so many CT scans and mri eyes, I'm
probably glow at night. But I said to them, look,
(16:26):
you've scanned everything else that I'm saying is hurting, and
I'm telling you of this pounding headache, and you've done
all the stroke tests, and I'm passing that I would
actually like you to scan my head before you let
me leave the hospital. And so they said, yep, we
don't think it's related, but we'll just do that because
it seems prudent and it'll make you happy bit more relaxed.
(16:49):
And so you know, the surgeons at that stage, they
were already starting to come on to the path of
realizing the patient was more than just the one condition.
And so they scanned my head. And I still remember
sitting with my wife, Justine, and we're sitting in my
bed and the neurosurgeon comes in and he says, look,
(17:11):
mister Lee, sorry to tell you this, but you've got
two aneurysms in your head. It's not related to your
other condition, but you've got these bubbles in your you know,
in the outer wall of your arteries in your brain
that makes you feel This is going to sound crazy,
but Justine and I laughed, and the neurosurgeon looked at
(17:33):
us and he said, I don't normally get that experience
that response from patients. And we just sent him and said, well,
what else could it be? We were already sort of,
I guess, applying a bit of black humor to it
that of course I'd have something else, you know, it
couldn't just be that one thing. And so, yeah, he
(17:55):
sat down and we went through the scenarios for the
I had two aneurysms, not just one. One on the
left side of my brain, one on the right.
Speaker 2 (18:05):
Okay, well you know, balance it out exactly.
Speaker 3 (18:07):
Why have one?
Speaker 2 (18:08):
Why have one two for the price of one scan?
Speaker 3 (18:11):
Yeah, indeed, And so they here sort of took me
through that, which was obviously it was scary as we
started to go through the detail of how they would
treat it. For these particular aneurysms, they were right in
the middle of my brain, and so the technology in
twenty seventeen was that they couldn't really treat that anyway
other than an open brain surgery. And so his advice was,
(18:37):
don't you know, We're just going to put you on
a program of scanning you every year and if we
see a change, then we'll revisit that decision, and so
that's what we did. And then in May twenty twenty four,
I went from my routine annual scan and got promptly
advised that the aneurysm and the right side of my
(18:58):
brain was changing shape, indicating a shape that's likely to burst.
Kind Of for anyone that doesn't know what an aneurysm,
it's like you get a bike tube and it's got
a bubble on the side of it and it's going
to pop. That's kind of what it is.
Speaker 5 (19:13):
And then you really don't want it to pop.
Speaker 4 (19:16):
Oh no, no, no.
Speaker 3 (19:18):
You know, they made it quite clear that the prognosis
for a failure of that outer wall wouldn't have necessarily
been a good outcome.
Speaker 2 (19:29):
So when you are faced with this, you know, and
I kind of I'd love that you had the response
that you did for a start, Like I just I
think that's actually really healthier when you say it's crazy,
but I think it's great. You know, we don't get
to choose how these things happen. They so you get
to choose the way that you respond, though, and then
(19:50):
when you are actually looking at the reality of it,
did you ever think at all that this this could
not go your way and that perhaps this could be
could be curtains.
Speaker 3 (19:59):
Absolutely, so whilst we laughed there and then when you
gave us that diagnosis, there were plenty of tears afterwards.
So you know, when you know that for this particular condition,
fifty percent of people get to make it to hospital
if it ruptures, and then of the fifty percent to
get to hospital, only fifty percent get to leave hospital,
(20:22):
and then of the fifty percent to get to leave hospital,
only five or so percent of that will have no
side effect. And so knowing that if this thing went
in my head it would probably not have a good outcome, yep,
how does.
Speaker 2 (20:41):
That change the way that you view yourself, the world,
your relationships when you're faced with your own mortality.
Speaker 3 (20:49):
I think it opens up your heart. I think you
really realize that we're here for a short time. Make
it a good time. You know, we're not necessarily here
for a long time.
Speaker 4 (21:06):
You know.
Speaker 3 (21:08):
I was loving diving, but having two things in my
head that we didn't know if it would affect it
or not. We weren't going to like just take that punt.
So diving, whilst it was a lot of fun, became
one of the things that I no longer do, but
you know, the you just have to try and sort
of find the positives out of something, you know, and
(21:29):
I really do think that there's a lot of negative
things that have happened to me, but the finding that
that's a tiny snippet of something positive can give you
the strength to get out of it.
Speaker 2 (21:43):
What was he positive thing about the brain and neurism, Well.
Speaker 3 (21:48):
The positive thing about my brain aneurysm was then actually
coming to the realization that my horrible, big, nasty autoimmune
condition had actually saved my life. So sounds crazy, but oh,
you're on the right show for that. So you know,
if I hadn't had the automun condition, I had absolutely
no symptoms from the aneurysms at all. And when they
(22:12):
went and did the first aneurysm operation, which I was
lucky enough, they could do it intravenously through the arteries,
technology had changed so they could get to that without
cracking my skull open, which is good because I've now
had two of them. But the you know, just the
(22:37):
I think it's it's just really it grounds you.
Speaker 2 (22:41):
You, Yeah, you suddenly start having a great appreciation for
all the small things, right.
Speaker 3 (22:50):
Yep, absolutely yeah, and and I think it's it's just
so important for people to let their friends and family
know where they're at mentally with stuff like this, because
if you lock yourself away, it can become all consuming.
Speaker 2 (23:08):
We're going to take a break and we come back.
We'll bring Kylon to actually talk to us a little
bit about how we can manage these kind of diagnosies
in our life as we're going forward and get his
take on it as well. But we'll continue also chatting
with Mike here tonight on the Nutters Club. Back soon.
Speaker 1 (23:25):
This is the Nutters Club thanks to New Zealand on
air on News talksz'd be.
Speaker 2 (23:30):
All right, welcome back to the Nutters Club. We've of
course been talking with our guest tonight, Mike about his
medical diagnosises the effect on his mental health as well
as his physical But then Cole, look, you know you've
been sitting there very patiently listening for all this when
you know Mike's been talking about, you know, some of
his reactions and then kind of having like a very
(23:52):
pragmatic and practical approach to it. Is that something that's
normal for people or is there one way that people
tend to respond to life threatening diagnosises more so than others.
Speaker 5 (24:06):
Yeah, I mean, I think I think the easiest way
to think about it is the technical terms we talk
about adjustment. But actually I think it's like grief. You know,
most people know have known someone who's died or knows
someone who has lost someone close to them, and so
they have some sense of what that process looks like.
I think the thing is that when we get a
(24:27):
life altering or life changing diagnosis, what we're doing this
sounds kind of weird, is we're kind of grieving the future.
Speaker 3 (24:33):
Like we all have.
Speaker 5 (24:34):
The slightly unrealistic denial of our mortality version of our
story where we just sort of go on forever and
you know, maybe we know at some point we're going
to die, but you know, life will just sort of
remain unchanged and then at some point will just disappear
in a puff of smoke. Because we're sort of hard
wired to deny mortality. It kind of keeps us getting
out of bed in the morning. You don't want to
do well on it too much, otherwise you end up
(24:56):
doing a job like mine. So, you know, I think
it is about grief, and it is about making that
adjustment to thinking about how is our you know, life
going to be different, whether it's you know, losing diving,
or you know, having to make different decisions about our
day to day life, or actually just all of a
sudden have to learn about these conditions and you know,
(25:18):
accept the reality that changes are going to have to happen.
And of course you asked how to different people respond? Well,
I think, just like grief, different people respond differently, right.
I mean, what I heard you from you, Mike is
you had enough knowledge that you could quite quickly build
on that. But it also sounds to me like you're
someone who who gains reassurance from understanding and knowledge. Some
people you know, and you know, different strokes for different folks.
(25:41):
So people prefer to remain relatively ignorant, to let the
experts in their life handle it and just know, I
only know what they need to know and everything in between, right,
And some people might be very private, and some people
might feel free talking quite publicly about it. So, just
like grief and loss, I think there's a whole range
of things. But I think the main thing is to
make sure that we accept it reality and stay engaged
(26:02):
with the science and the treatment that we need to do.
Because I think when these things can go sideways is
when we just go so I don't want to know
about any of it. And we stopped taking the pearls,
or we stopped talking to the doctors, or we stopped
going to the appointments, because actually the distress of that
is too harder. We solve it through avoidance.
Speaker 2 (26:18):
What I really liked about your story there, Mic, is
that you talked about actually doing some of your own
work and being really active in it and pushing them
back away, but on the doctors, not in a disrespectful
way or anything like that, but you know, this is
your life, so it's actually you know, if you're going
to ask questions at any point in your existence, now
(26:40):
is a good time to do it. Which reminded me.
You know, there's a bit of an old saying, you know,
doctor knows best, and they do, like you know, I
don't think any of us in this room would imagine
that we know more than you know medical doctors, but
sometimes they just need a little bit more encouragement support.
And that you said that Mic was recognizing and understanding
the process as much of anything, But did you when
(27:02):
you're actually going through that, and when you were doing
that research, did you actually feel more re assured that
there was hope, that you know, there was something else
out there? Was that what was driving you?
Speaker 3 (27:14):
I think it was, you know, I think sort of
the I could either like you were saying, I could
have sat there and just let it happen to me.
But on you know, my job and my brain is
around processing data and innovation, and so I just couldn't
not and so it'd have been like switching my brain
(27:36):
off literally, and and so I dived into some of
that stuff. I did some research on my own. I
took it to my GP, showed him the research that
I had done. He was open to seeing it. You know,
I was one of the unlucky people that was having
(27:56):
negative side effects to the medications that are trying to
treat me with that. Some of them were pretty bad
side effects, you know, internal bleeding, spleen, doubling in size,
live a stone to pack up, And I'm thinking, if
my lover is going to pack up, I'll choose the wine.
Thank you very much.
Speaker 2 (28:12):
Fair enough, I'm going out with a nice central target penut.
Speaker 5 (28:17):
But actually what you're describing there is something really important too.
Just to jump in because we talk about this a
lot on the show, So you know, some people will
sort of think, you know, well, I don't want to
be a difficult patient. I don't want to question the doctor,
or you know, I don't want I feel too nervous
to share my thoughts with them. But actually it comes
down to the relationship. And one of the most important things,
particularly with your GP, and it applies to therapists and
(28:39):
other people you see regularly, is to build that good relationship,
you know, that mutual respect. And if you have that
mutual respect, then you can bring your ideas and a
good doctor will listen to them and consider them.
Speaker 3 (28:49):
And I absolutely second that. So the you know, the
way I didn't hit them combatively, you know you're doing
it wrong. I want to do it this way. It
was really just sort of saying to them, you know,
this seems complex, I'm confused. Can you explain it more?
And I really do I do fine, because I've seen
(29:11):
a lot of doctors that when you open with them
how you're feeling, they'll actually take a bit longer and they'll
explain it a bit more. And if you're starting to
sort of really engage with your condition, that can really
help them treat you because they're now seeing a more
rounded picture.
Speaker 2 (29:30):
Let's go to the lines. Mark, good morning to you.
Speaker 4 (29:34):
Oh, I thank you for taking my call. I was
just going to say, when you first came on, you
were talking about a diagnosis, and I think that the
pain and the body who've got a remarkable ability to recover.
That's what I've just discovered. I'll walk about five k's
(29:56):
every day when I can, and I haven't needed for
about forty years now.
Speaker 2 (30:02):
Yeah, So five k's and you've done that how many
every day? For how long? Mark?
Speaker 4 (30:09):
Oh? Quite a long time since the late eighties. I'm
sixty six now, sixty five.
Speaker 2 (30:19):
And when you started doing and what were some of
the changes that you noticed in yourself? You know, once
you'd been doing it for a while, because you know,
you start doing these things, thinking was more positive.
Speaker 4 (30:30):
Yes, and I would sleep better. I was able to
work better. And I went into partnership with my doctor
and we set up a business and I did that
for a long time. But my father had tuberculosis. He
was a pilot bomb of pilot and they found the
only thing that would cure them was bed rest and
(30:50):
also heavy medication. And I think they discovered in hospitals
that people can really recover and make a group fist
of things.
Speaker 2 (31:01):
Yeah, so physical activity consistently, Kyle, is this something that
we know can have a positive out out look for
people outcomes?
Speaker 5 (31:10):
Oh, I mean it's fair to say it's probably always
a good idea, but it certainly can shift our move
and you know, some people find that it's nothing that
works for them. I guess the main thing is that
to always be trying to do, you know, more than
your creating good habits and doing more than you did
yesterday is always a good idea.
Speaker 2 (31:29):
So small and consistent. When's the race at the of life?
Speaker 4 (31:32):
Right?
Speaker 5 (31:33):
Absolutely?
Speaker 2 (31:34):
Yeah, fantastic, Mark, That's a really great one. Thanks so
much for sharing.
Speaker 4 (31:38):
That's all right. I had we had a surgeon friend.
I lived in m you are with my mother for
a thirty years and a surgeon friend came to came
to visit and he said, look, you've had this diagnosis
of schizophrenia. Please don't go jogging. So I just walk.
I walk everywhere and get the busy.
Speaker 2 (31:57):
Brilliant. Whatever works.
Speaker 4 (32:00):
Thanks all of this Fear program.
Speaker 2 (32:02):
Thanks very much.
Speaker 3 (32:03):
Mark.
Speaker 4 (32:03):
Go Well.
Speaker 2 (32:05):
You were saying, Mike, you know, walking in something that
you've done quite a.
Speaker 3 (32:08):
Bit of yep walking. It's just fantastic. It does get
Like Mirke was saying, it gives you a chance to
reset your brain, get off your device, and just you
go out there and see what's happening in the world
around you. And you can see things that just snake.
You know, there might be a bird flying in a tree,
it might be a bumblebee or whatever. It might be
(32:30):
a dog doing something stupid. My wife and I were
driving today and this guy is walking his dog and
the dog stops, wouldn't move. The guy keeps walking and
the dogs just watching the retract, delete, extend. The guy
eventually stops and looks back at the dog and he
works out the dog wants to cross the road. So
we're sitting at the lights and the dog. The guy
gets back to his dog and he points at the crossing.
(32:53):
The dog stands on his hind legs and hits the button.
Way yeah, no way, yep, there was. We saw it
for our own eyes and we absolutely yeah, that's very
well trained. But you know, you're out there walking, you
see random things and it can just change your mood.
It can make you just forget about something that was
really bothering you.
Speaker 2 (33:14):
The things we see when we go on a walk.
So it wasn't always just about you though, with some
of the the medical experiences that you had, and actually, Mike,
you ended up having a couple of experiences where you
inadvertently became a medal medical advocate for others. How did
this come about and what was it that you ended
(33:36):
up experiencing with this?
Speaker 3 (33:39):
Yeah, thanks, Amris, so way before I got my own diagnosis.
My dad's he's still with us today, but he's you know,
he's pretty frail. He's in the care of hospice, so
he's sort of, you know, not got he's got more
days behind him than he has ahead of him. But
(33:59):
I was sitting with him at hospital and the doctors
were coming in and talking to him about several things,
and I could see that he was confused, you know,
the medical jargon and just the stress of you know,
being in the hospital and he just wasn't getting it.
And then the doctors would sort of leave and he
(34:21):
would look at me blankly and I'd be like what,
and he said, well, I don't know what they said,
you know, I don't even didn't even really hear what
they said, and I said, well, they you know, I'm
not a doctor, but I was able to sort of
say to Dad, you know that they're meaning this, They're
saying these things, we need to start looking at these
(34:42):
as treatment options whatever. And so I wound up being
his advocate. And my dad's got a whole range of
complex health conditions COPD so's airways, he's had two strokes,
he's had cardiac issues, he's had circulatory issues, he's very frail.
It's a very complex patient. And so the doctors, you know,
(35:06):
I would then articulate to them all of his things.
And so we were sitting in the hospital one day
and I was doing that with Dad, and in the
same room the dad was in, there was another family,
lovely simone lady, and she was sort of hearing me
(35:27):
talking to Dad after the doctors had left, and so
she said, come and talk to me. So I went
and sat with her and sort of, you know, she goes,
where are you guys from, and wanted to know a
bit about us. And then I was sitting back with
Dad and the doctors came back in to talk to her.
And so it's one of those open planned rooms and
(35:48):
it's not that your eavesdropping, but you can't kind of help.
It's like, you know, and when they when we hear
certain things, maybe it triggers that I kind of wanted
to listen into that because it sounds pretty scary or interesting.
And so after the doctors left, she was like talking
(36:08):
to her family saying, you know, what did that mean?
And it wasn't that she didn't want to ask the
doctors a question. I think she was just shell shocked
at being in hospital like most people. And so I'd
overheard her talking to her son asking these questions and
I said, well, you know, this is the sort of
(36:31):
things that the doctor said. You know, and I said
to her quite clearly, I'm not a doctor, but this
is what this type of thing means, and sort of
just in normal language, and she went, oh cool, So
you know, come and tell me more. So when I
sat with her again and we talked a bit more
and built her a relationship. And I think this really
(36:51):
comes down to, as Kyle was saying before, the relationship
side of it. So I inadvertently built a relationship with
this lady. And so she starts telling me all the
things that have been ailing her for a long time,
and then anyway, the doctors come back and to have
another chat with her, and they said, you know, you
need to go and sit back with your father because
(37:12):
we need to talk to this lady. And this she
turns around and goes nope, boy stays And so the
doctors looked at me and they're like, what the heck
has happened here? And so they told her all the
things that they were wanting to talk to her about,
and then she would look at me and I'd ask
a couple of questions and then the doctors, and it
(37:34):
actually started to change the relationships that she was having
with her doctor, because then she felt comfortable that she
could ask a question. And so that patient advocacy think
can then empower people that are mentally struggling. You know,
are they trying to hide it, are they trying to
not feel stupid or all of those things. And so
(37:54):
because they hear somebody else sort of pose a question
or speak up on their behalf, they then start to
build that thought process that actually, I can do this too,
And then that interaction actually started to engage the doctors
in a different way with her. You know, I noticeably
saw over the time that dad was in hospital because
were there for like a week or so, the doctors
(38:17):
were talking to her more and more clearly every single day,
and she was asking questions every single day.
Speaker 2 (38:24):
Kle, I'm sure there's a lot of different reasons, but
you know, why do people sometimes not ask questions of
their medical advisors, of their of their doctors. You know,
why do some people shy away from, you know, wanting
to even engage in that process.
Speaker 5 (38:41):
Well, there's an old study that they did, and a
lot of medicols now do this as part of their training,
which is they get doctors to actually lie down in
a bed and be talked at by experts and you know,
have the experience of being a patient. Because one of
the things that and again this is coming background to
answer your question, one of the really obvious answers to
that is if you're in bed and you're in one
(39:03):
of those skimpy little nightgown things, and you're feeling poorly
and you're having trouble, and you haven't a decent meal
for a couple of days, and you're on your own
and you're surrounded by strangers, and someone comes in and
dumps a whole lot of information on you. You're probably not
going to process it that well anyway for a start, right, well,
when you put it that way, But also some people
have to struggle to speak up generally in their lives.
(39:26):
I mean, we've talked to thousands probably on this show
over the years, but it's actually quite an assertive thing
to be able to ask a doctor to stop and
explain something. I mean, and to some extent, you know,
it also depends on how much we just blindly trust
authority or how much knowledge we actually have to start with.
So I think you know, even to ask a question
imployes that you're understanding enough about what you're being told
(39:49):
to ask a question about it, right, I mean, if
it's all Greek to me, then you don't even know
where to start. So I think there's lots of answers
to that question, but they do come down to being
and of course, you know, all due respect to doctors
who do a tough job, but some doctors are also
better at explaining stuff to patients and others. We have
(40:09):
to accept that. So yeah, but being able to find
ways to have those conversations are already important. And of
course the first step, like we've just heard Mike describe
and like we talk about a lot on the show,
is get someone else who's well, who's feeling onto it
and they're sitting in a chair rather than a bed.
That's a good start in terms of actually being able
to ask those questions.
Speaker 3 (40:30):
Now, my advocate was my wife, right, So even though
I've able to articonate this stuff now, back at that time,
it wasn't me sitting there processing it. It was her
And then we would talk and she would tease things out.
It was you know, and that's why, you know, I
got to where I am now because of that support network.
(40:53):
You know that, because even though when they're talking to
you and now I'm obviously I understand my condition a
lot more, but back then my wife would be you know,
what does that mean? Explain that because I'm sitting there
shell shop right, Yeah, exactly.
Speaker 5 (41:09):
The emotions are getting in the way because of course.
Speaker 3 (41:11):
And it's seriously, when you're the patient, it's just coming
at you. Yeah, and the people around you are the
ones that are picking up the pieces.
Speaker 4 (41:21):
Yeah.
Speaker 5 (41:21):
I mean to give a really simple example, hate mish.
I think most people, if for instance, they're getting a
really terrible diagnosis like a terminal potentially like cancer, no
one hears anything after cancer, right, you know that's really
normal because that's what when the emotions kick in and
all of a sudden we can't think straight at all.
Speaker 2 (41:37):
So so, what though, can I do if I don't
have a mic that just happens to be in my
in my wardroom, or I don't have Mike's wife. What
are the options open to me? Is there anyone else
there that could potentially help me?
Speaker 5 (41:52):
Well, most people have a phone these days, they can
record it. You can ask the doctor's permission just to
record the information that they're giving to you so you
can go back and listen to it later. You can
write stuff down, that's another good looking, straightforward strategy, and
if they are doing notes, and also ask for a
copy of the notes, not because you want to snoop
through things, but again it's a way to actually get
the information written form and ask nurses. Particular, if you're
(42:17):
in a hospital ward, keep going back to the nurses
because they'll be turning up more frequently for a start, right,
so you could say, hey, look, I didn't understand that
thing that he said, what's this condition? And they that
would either be able to answer your question or they
may be able to go get the doctor to come
back at some point.
Speaker 2 (42:30):
And also too like if you actually want to have
an advocate person there there is an advocacy service.
Speaker 5 (42:36):
Yeah, there is. In most hospitals will have support services
that you can access, you know. I mean a lot
of the advocacy services are really useful, particularly if you're
trying to navigate a tricky situation. But I think in
the first instance is ideally friend or family member to
help you fundamentally just kind of think straight and make
sure you're getting all the information down.
Speaker 2 (42:57):
That's it for this episode of The Nutters Club, thanks
to our incredible guest Mike Lee, as well as psychotherapist
Kyle McDonald. If you liked what you heard and think
it might help someone out there there, please share this
episode on your own channels or with family and friends.
And if you ever want to be part of the show,
then give us a call or text. When we broadcast
(43:17):
live on News Talk SETB eleven pm Sunday nights, New
Zealand standard time. Check out newstalkzb dot co dot z
for local frequencies or a link to the live stream.
A big thanks to New Zealand on Air for their
ongoing support and making the show. Take care and always
remember that the world's a better place with you in it.
(43:39):
Life it isn't easy, it is, however, with it.
Speaker 1 (43:53):
For more from News Talk SEDB, listen live on air
or online, and keep our shows with you wherever you
go with our podcasts on iHeartRadio.
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