June 23, 2025 • 31 mins
We do a check in to see what the update with Brooke getting a Stem Cell Transplant is and Monty went to a pain rehab!
We also chat about how we talk to our kids about chronic illness and Brooke has a cracking tip that might make it a little less scary for our kids.
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Episode Transcript
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Speaker 1 (00:06):
It's Icronic time with Brooken Monty. Thanks for joining us
on our Chronic ill podcast.
Speaker 2 (00:16):
Don't change your day, Joel, will you? Maybe?
Speaker 1 (00:19):
I certainly won't. It is it's Brooken Monty and we
both have a plethora of chronic illnesses. That's why we
decided to do icronic for you. If you've got a
chronic health issue or you love somebody who does, yes.
Speaker 2 (00:33):
We hope it makes you feel like you've got a
got a buddy in us, someone to yes, to listen
and understand and feel where you're at.
Speaker 1 (00:43):
Yeah, totally, because we often chat about how isolating and
lonely it can be having a chronic health issue. Like
even though Brook and I both you know, Brook's got
a mess, I've got chronic migraines, We've both got chronic fatigue.
We connect over it, but also our own I hate
the words very different as well, like everyone's just so
fucking different. Yeah, it's hard about.
Speaker 2 (01:04):
It, that's true. But then, but then there are so
many similar themes, you know, like because you know, whether
you know, whether it's like guilt with your family, or
it's like a body image thing, or you're you know,
feeling like financially you're a strain. You know, all these
kind of things are pretty universal, I think as to
(01:25):
chronic illness.
Speaker 1 (01:26):
Totally, of course they are what joys. Anyway, our last episode,
we were talking about Brookie, let's get an update from
both of us, because you had spoken to your neurologist
and she said, you're a candidate for stem cell transplant.
What's the update.
Speaker 2 (01:46):
Yeah, so I have had an appointment with the person
that heads up the stem cell transplants for MS in
Australia and yeah, so she is kind of run through
how it would work and has said that yes, I'm eligible,
which is a weird thing because when she you know,
(02:08):
when she told me, yes, you're eligible to do this,
I was like, oh, that's amazing, Like I'm so lucky,
because you know, hundreds and thousands of people go overseas
to have this procedure done because they don't fit the criteria.
So on one hand, I'm like, I'm so lucky. But
then on the other hand, I'm like, I don't want
(02:29):
to do this, Like I really don't want to do this. Yeah,
but yeah, you know, like I obviously no, long term
it's the best thing to do. So I'm meeting with
her again next week and then we'll come up with
with more of a plan.
Speaker 1 (02:45):
Do you think that one of And you know, I
was telling Sam, I'm like, Brooks, a candidate for this.
Three medications had to have not worked for you, and
so that's how you were eligible for this. But yeah,
like you said, your benchmark move, do you know what
I mean? Like, at some point this was your worst
case scenario and now it's your best Like what the fuck?
Speaker 2 (03:06):
Yep? Yep. And there was a point over the last
couple of weeks where I thought that maybe I wasn't
going to be eligible, and then I found out no,
you know that I was, And I was like, oh
my god, thank you know a few thank god. And
I'm like so excited when I, you know, find out
that yes I'm eligible, But like what am I excited for?
Like to get chemo and lose my hair and be
really sick for a couple of years. Like sound like
(03:29):
a lot.
Speaker 1 (03:29):
Of fun, I know, But there's still an option. I think, well,
there's options available, there's still hope involved. And when we
don't have hope, when you're chronically ill, that's when it's
really hideous. But yeah, like I was saying, to Sam
and I was telling him you were eligible. I said,
one of the things that is the most confronting about it,
(03:50):
even though it's going to be such a full on procedure,
is the losing the hair for you, which I totally get, Like,
there's something so symbolic about our hair, and I know,
out of all the things, it is the least of
what actually matters, but it's almost the worst.
Speaker 2 (04:10):
Yeah, it's wow. It's almost a little embarrassing to admit
that's that kind of plays into your reasoning, but it does, like,
of course, you know, of course, you do what you
have to do, so it's not an option to keep
your hair. Some of you guys have reached out and said, oh,
you know, you can use the cold cap to save
(04:31):
your hair. Unfortunately, for this kind of transplant, you can't
use the cold cap, which I thought was really interesting.
I've found out that you can only use that cold
cap to save your hair if you're doing chemo that's
like in a specific place. So if it's like breast cancer,
for example, and they're targeting your breast, then you can
use the cold cap. But if it's if they're targeting
(04:53):
your whole body, like if you had a blood cancer
or something like that, then you can't use the cold cap?
Speaker 1 (04:59):
Why why you use the cold cap? Like it does
actually do.
Speaker 2 (05:03):
It's something like it interfares like I'm not getting with
technically right, but it's interferes somehow with your brain. And yeah,
and because of that, you can't you can't use it.
But if you didn't need to access your brain, then
you could use it. Yeah, but anything whole body is
(05:23):
a no.
Speaker 1 (05:25):
You what looking at this procedure that you're about to have,
which you outlined really thoroughly in a previous episode, which
is extremely huge, you also found out the process is
quite a lot longer than you thought.
Speaker 2 (05:38):
Well in terms of the recovery, Yes, and it's different
for everybody, so you kind of don't know where you'll fall,
you know, with that. But I was told, you know,
some people can recover within six months and other people
it's like two years. So it just kind of depends
how you respond, I guess. So, yeah, it's quite a
(06:01):
it will be quite a long process, I imagine.
Speaker 1 (06:03):
Okay, so what's next steps?
Speaker 2 (06:05):
So I will meet with her again next week and
then I imagine we'll have more of a plan in
place in terms of when and all those kind of details.
Speaker 1 (06:16):
Do you just kind of want to get it started
now or it's yeah, it's.
Speaker 2 (06:21):
Such a funny thing. Like when I first had the
conversation with them, they had mentioned they we could do
it as early as August, and my first reaction was
oh my god, no way, like there's zero plans. That's
way too soon. But then after I left, I was like, oh,
maybe that is the best option, because I'm finding myself
(06:42):
thinking about it all the time.
Speaker 1 (06:44):
Of course.
Speaker 2 (06:45):
Yeah, and you know, and you know, the way they
put it is, you know it's better to do it
sooner than later, and you know, in case you do
relapse and then you end up with more disability, it's
obviously better to do.
Speaker 1 (06:55):
It sooner as soon as you can.
Speaker 2 (06:57):
Yeah, So I feel like, yeah, I've kind of come
around to accepting that it might need to be soon. Wow.
Speaker 1 (07:08):
All right, Well, I guess we'll check in again after
your next appointment and you might have dates and a
little more infra about it.
Speaker 2 (07:14):
But fuck, and also you you've had a huge week.
Speaker 1 (07:19):
Yeah, well the other week, Yeah, I went to pain
rehab and this was like discussed quite a while ago
with my neurologist and then I went and saw a
pain specialist who did the nerve oblation where they like
fry your nerves so you don't have pain signals to
your head. And they were like, I think you should
do pain rehab and I was like, to me, that
(07:41):
is the last case, do you know what I mean?
That's where there's nothing else you can do for yourself.
You just go to learn to manage the pain. So
I resisted it for so long because I'm like, no,
I'm not there. I'm not there.
Speaker 2 (07:53):
Yeah, it almost feels like you've given up.
Speaker 1 (07:55):
That's exactly what it felt like to me. And it
was depressing to me because I'm like, is there nothing
that's going to work for me? Like? Is this where
I'm at?
Speaker 2 (08:03):
He is just mabe put up with it, yeah, putting up.
Speaker 1 (08:06):
With it, but figuring out how to manage it better.
So it really scared me and I was like, I
really don't want to do this anyway. Last time I
was in hospital, they were like, look, you really should
do it. And amazingly, my migraines have been under control
since that nerve ablation. I've had six months. Yeah, so
that has I haven't had six months in years. Let
(08:26):
alone last year where I was in bed literally ninety
percent of the time. So it's been quite amazing.
Speaker 2 (08:31):
But so I could I just ask have you had
one of those nerve oblations before?
Speaker 1 (08:36):
Never?
Speaker 2 (08:37):
Okay, so this was the first one that you had
six months ago?
Speaker 1 (08:40):
Yes, And she said it like it will last about
six months. So again my anxiety flares up because I'm like, fuck,
I'm nearly at the end of the six months. Are
they going to come back? So anyway, I spoke to
Sammy because it's quite a commitment, like I've got three
kids and it's a two week stint to go into
rehab do this rehab, and I decided to do it
over too lots. So I've done one week and I
(09:03):
went in and it's in a hospital setting, but it's
all mind body connection.
Speaker 2 (09:10):
Okay, So can you just set it? Can you paint
the picture for me? Like, what's the room? Like?
Speaker 1 (09:15):
The room is like a hospital room. So I walked
in and I cried because I'm like, oh my god,
I knew it was going to be probably a hospital setting,
but I'm like, I'm going to be in here for
a week and I've got the white walls and you know,
the wooden cupboard. They had a blanket on the bed.
So that was the only difference between between that and
a hospital in there's not all the kechtic equipment like
(09:37):
a hospital, but it's laid out like a hospital.
Speaker 2 (09:39):
Okay.
Speaker 1 (09:40):
And then each day you get you have a schedule
for the week and you'll have a physio hydrotherapy and
so I was looking at that shit, going this is
I don't need this, Like I can walk, I do
I walk, I do pilates. I don't need any of that.
And then each day you do a class and it
might be on pacing or breathing and mindfulness or an
no other one was medication. So each day you have
(10:03):
just one session with a specialist and then one class.
So I also looked at it and was like, I
have so much spare time here. This is insane, Like
I'm going to be brought out of my brain. So
the first day I arrived, I had physio. It's very
different physio. None of its hands on and all of
the specialists work together, like they have a meeting every
(10:23):
day about each patient, and so.
Speaker 2 (10:26):
So what do they do in a session if you
don't So it.
Speaker 1 (10:29):
Was like all of them kind of incorporate meditation and breathing.
Even the physios and she kind of looked at how
I sat and talked to me a bit about my posture,
talked about breathing, how to stand up and stuff like that,
and I was like, okay, still really hesitant. Then went
into a first class and we did a breathing exercise
(10:50):
and I was just like, this is horseshit. Still I've
done this stuff. I've meditated before. Then Anyway, as the
week went on, I'm like, I actually haven't done this
I meditate, but I have it on my to do
list to mark off, like yeah, I'm never present or
in the meditation. I'm like, meditating is good. I'm going
to do this, I'll mark it off. Like I realized
(11:11):
during that that I have it as a job as
opposed to it really helping me. So everything they teach
has a science behind it. But it took me four
days to drop in because I was like, I've done
all this, this is horseshit. And I said to one
of the people taking the class, I said, I'm really
resisting this and she's like, is it not medical enough
for you? And I said, yeah, I think it's that
(11:32):
I think I was coming here to go I'm going
to alter my medication. I'm going to have kind of
a quick fix, and it made me realize this is
a lifelong Yeah, there's no cure for this, and there's
no quick fix. And it took me until day four
where I dropped in and I was like, Okay, I
can see this is actually going to be of benefit
to me.
Speaker 2 (11:51):
When you talk about the meditating aspect, how was the
way you were meditating there with them different to how
you would meditate at home.
Speaker 1 (12:00):
I think just hearing it from a professional and them saying,
you know, we live in our so we've got a parrot.
That's getting a bit technical, but a parasympathetic nervous system
and a sympathetic nervous system, And the sympathetic nervous system
is where I own fright, fight or flight constantly, which
is where I live, and where when you go over
to the parasympathetic nervous system is where your healing does.
(12:22):
Where you're healing is your resting is. And so it's
constantly trying to get over to there more often. And
I think even having that in my mind of when
I'm feeling stressed, going I'm in my sympathetic how can
I get into my parasympathetic and that might be I've
learned like a box breathing meditation, which everyone should look
that up.
Speaker 2 (12:42):
Yeah, I do that, and my husband does that. James
does that with our oldest daughter eating per lot. Yeah,
it's really good, and I learned it for her, but
now I use it myself, yeah all the time to.
Speaker 1 (12:55):
Yeah, where I've been using that. So it's breathing in
for say four or five deep breath, holding for four
or five, letting it out for four or five, and
it's picturing a box. Simple, I knew it, but it's
using it and actually dropping into it. And then I
do guided meditation. And then another physio taught me like
a body thing where it's kind of like your tense
(13:16):
up and then release tense up and release different parts
of my body. And I find that all of those
combined have been really helpful. Again, it sounds like nothing.
Speaker 2 (13:28):
Yeah, can you do like a little video or something
and like show us how you tense up and release.
Speaker 1 (13:35):
Yeah, it's kind of difficult because it's so subtle. It's
almost like tensing and muscle releasing. And then I go
through different parts of my body. And I also realize
how my shoulders are always up at my years, so
constantly they're like, slide your shoulders down your back, and
so I feel that myself sliding them down, and my
(13:55):
jaws always clenched. So I'm trying to it's just making
me more conscious. Yeah, And I got home from rehab
and I had the best week I've had in years,
literally years. I know it can't be linked because I
know this is all a slow burn, but I had
so much energy and I didn't have even a headache,
(14:17):
and I'm like, this is what it feels like to
be normal, Like I just.
Speaker 2 (14:21):
Don't go getting off, don't go getting all normal on me.
Speaker 1 (14:24):
I'm like, well, I can't do a chronic if I'm
fixed anyway. Of course, I feel like the last couple
of days have just been absolutely exhausted, but it's so
worth doing so for anyone who has chronic pain, it
is so worth looking at. I was so anti it,
and it took me literally four days before I went okay,
I can see the benefit of this, and then I'm
left on the fifth day, but I can't wait to
(14:46):
get back now.
Speaker 2 (14:47):
And it also the next bit, Yeah, amazing. It also
goes to show just how like connected we are, like
how connected our mind and body really are.
Speaker 1 (14:57):
It's so connected. And I always knew do that, but
I don't think I got to the extent. And I
realize one of the things I'm trying not to do
is get. I get I'm quite all or nothing, And
I find myself meditating all the time, and I'm like,
this isn't sustainable, Like you're doing this so intensely that
it's not going to be doing what you want it
(15:19):
to do. So it's almost like what I've learned I
have to just put into my day as I can continually,
as opposed to going, oh my god, Okay, i'm feeling stressed,
I'm going to lie down and meditate, because that's not
real life. I'm not going to be able to do
that all the time.
Speaker 2 (15:34):
And also meditating can look really different for different totally,
So I'm not great at all at meditating. I do
like a really if I'm feeling anxious about something, I
might do like a quick, like five minute kind of meditation,
But other than that, it's just it doesn't it's not
for me. But like I might get that kind of
(15:55):
meditative state by like going, you know, through a swing course.
Speaker 1 (16:00):
Something totally and everyone does it differently. I just guess
it's having all those tools in your tool about to
pull upon because even in like I've been home for
a week and the week that I was there, I
can tell a difference like I actually can, and so
it makes if you can see a difference, it makes
you want to do it more. You know, I'm like, Okay,
(16:20):
I can stick to this. So anyway, I've got another
week coming up, and I don't know if it's just
been luck that I've had a good week or if yeah,
it has been coming into play. But like you said,
how can it not like our mind body connection, And
I realize how stressed and anxious I have been Like
my body they say, like your body gets locked, it's
(16:40):
like stuck, and then your you know, your mind is
and then your whole body does a coping mechanism where
it all tenses up to protect you. And so it's
kind of undoing all that it's made. It's interesting.
Speaker 2 (16:54):
Yeah, I'm really proud of you. You went and you
gave it a good shot.
Speaker 1 (16:58):
Even I gave it a good shot, and I'll keep
doing it. But anyway, we always ask to hear from
you guys, and I thought this voice memo we got
was quite interesting book, because especially with what you're facing with,
really something that's going to take over your life for
a couple of years. Yeah, So I wanted to ask
you this question and hopefully also help our beautiful listener Alex.
Speaker 3 (17:22):
Okay, Hey, girls, So I wanted to ask you both
how you go about explaining your chronic fatigue and your
need to have these rests to your children, because my son,
he's at an age where he understands and he worries
(17:43):
about me, and he sort of asks, oh, you know,
are you feeling better today?
Speaker 1 (17:48):
Mom?
Speaker 3 (17:48):
Or you do you need to lie down? Do you
need a rest today?
Speaker 2 (17:52):
Mom?
Speaker 3 (17:53):
And that sort of makes me worry about him that
I'm putting on all of this extra stress on him,
and I just don't know how to sort of, you know,
make it a little bit easier for him to understand
and I guess not worry about me, and he shouldn't
really be worrying about me because he's a child. But
(18:17):
I just wanted to know how you guys deal with
that side of.
Speaker 1 (18:21):
Things with your own children.
Speaker 3 (18:23):
By the way, love you guys.
Speaker 1 (18:24):
Thank spapeh.
Speaker 2 (18:27):
Thank you, Alex, I won't lie. That kind of breaks
my heart a little bit. And I really feel that, Alex.
I really really feel that because my oldest in particular
is a real thinker and warrior, and if she can
see that I'm not doing well, it will really stress
(18:48):
her out. So I don't know if this would help
you at all, Alex, but we have this system where
Edie will set my oldest. Edie will say, how you're
feeling out ten? Mom? I think I've mentioned it on
here before. And then because what I was doing for
so long was I kept saying, Oh, I'm fine, No,
(19:09):
mommy's fine, I'm good, No, I'm not tired, and no,
I'm great, But then she can see that I'm not.
So I'm here telling her I'm fine, I'm great. But
then she can see, but you're not really walking very
well today, And so I was told that is really
confusing for her, and it's much better to be honest
(19:30):
than try and hide it, because if you try and
hide it, she doesn't trust what you're saying, and that
then leads her to think the absolute worst. So we
have this system and she'll say, how are you out
of ten? And I. You know, there are some days
when you know I'm not having a good day, and
I'll say, look, i'm at seven today or a six today.
(19:53):
But then she can see like that, I'm still doing everything.
You know, I'm still taking her to school and picking
her up, and we're still you know, I'm still making dinner,
and we're still playing board games over you know, over
dinner and things. So I say, look, it's not amazing
today like six or seven, but you know, hey, I'm
still doing all these things. So I think that's been
(20:15):
really good for her. And I guess in some way
gives her some control as.
Speaker 1 (20:21):
Well, yeah, because she knows where you're at, as opposed
to guessing or in mind making up like Mum's fucked,
Mum's fucked.
Speaker 2 (20:28):
Like yeah, yeah. And you know, there are some days
when you know I might not be having a great day,
and she might ask me like ten times a day,
and I feel like my heart breaks a little bit
more each time she asks that. But then I think
this is just the way our life is. I can't
(20:49):
do anything about it. And in the end, I think,
you know, she is going to be a more caring
and more empathetic kid because of this. You know, I
have to ask her sometimes for help with things, and
sometimes that feels really like it just feels like it
goes against the natural.
Speaker 1 (21:07):
Grain of things, you know, totally, yeah.
Speaker 2 (21:12):
You know, but now she will kind of do those
things without even asking because she knows. I will have.
Speaker 1 (21:18):
Very unique though, because my parents don't do that like
they have. This is how I am.
Speaker 2 (21:24):
I wonder if it's different between boys and girls.
Speaker 1 (21:26):
I think so. I think it depends on the person.
But I also think that, yeah, Edie's quite special. I
don't know if there's many kids that would go, you know,
how are your mum? How can I help you? Especially
when they're so young. Yeah, because my boys, I feel
it's very different. They're so used to me being unwell
that I don't think they actually know any different.
Speaker 2 (21:49):
It's kind of like it's like the norm almost, Yeah.
Speaker 1 (21:52):
It's the norm. Like they'll come, you know, I'll be
like I have to have a sleep, like they know
every day I have to have a sleep or you know,
but even when I went to hospital for a week
or whatever, I get home and they just don't acknowledge it.
Speaker 2 (22:03):
It's to me, right, like this is strange.
Speaker 1 (22:07):
But I also feel like that's their possibly coping mechanism.
And like as hard as it is knowing it is
anxious and worried about you, my boys hide it, so
I don't know how much it's actually affecting them.
Speaker 2 (22:21):
And have you have you ever sat down, because you've
been this way for their whole life, have you ever
sat down, like with your elders backs, for example, and said, like,
mummy has this thing called chronic migraine, this is what
it is. Like you've done all that, right, Yeah.
Speaker 1 (22:39):
I have over the years, but it's probably a good
reminder that I should sit down and do it again. Yeah,
because I think to them, I just have headaches and
I'm tired all the time, where they don't quite get it.
But then I don't want to explain the extent to
them because I don't want there to be more even
if it's subconscious worrying. Of course, like I so vividly
(23:00):
amber as a kid if my mum would come home
sick from work, how unsafe I felt, Yeah, because it
was my safety that was not there, Like I had
to step up to protect her. And it's a hard
thing as a kid to then switch off. And also
as with a single Mum, I went into that protective
mode and you become almost the adult and the care
(23:22):
even though they don't need it. Like what Edie's doing
is her stressing and worrying and trying to look after you,
is trying to protect you, and yeah, yeah, look after you,
but she can't. She's a kid and there's a pressure
on her.
Speaker 2 (23:35):
And when you just mentioned safety, that really strikes a
call with me too, because James is away for work
a lot, and so it's often the girls and I
here alone, and when he's away, she gets quite anxious
in the evening before bedtime, and she can't really articulate why,
(23:56):
but I know, and we've kind of talked it through
in the past that in her little mind, she thinks,
what if something happens to me, Like what if a
Robert comes in the house and it's just Mum and
I and my little sister and mom won't be able
to fight them off or something. But that's that's what's
(24:17):
going through her mind. And I have to remind her
subtly when he's away that I'm good, I've got this,
like you're safe. Yes, yeah, yeah, this.
Speaker 1 (24:28):
Is like just a random story I remember from when
we were younger, because it was sometimes like that for
me too, because I would be like it was only
ever Mum, my sister and I and I would always
feel safe at my grandparents because par was there and
the way the house was set up, I knew people
couldn't get in. It was like in an apartment. But
(24:48):
I remember so vividly one night because I slept with
Mum until I was like thirteen. There's another fucking sign
of anxiety.
Speaker 2 (24:56):
But I sp I actually kind of love that.
Speaker 1 (24:59):
Yeah, I had h that was sleeping with my mom. Anyway,
we were laying there and we woke up to the
phone ringing. This is when there was only old school phones,
and so it was next to Mum's bed and she
picked up the phone. It would have been about midnight,
so we were fast asleep, and somebody on the end of
the line goes hello, a male voice, and my Mom's
(25:19):
like hello, Hello, like she was starting to get scared,
and I woke up and could hear, and he's just
kept going hello, and then my mom hung up, and
then I was like, what's going on. She's like nothing,
and then she picked up the phone again and he goes,
I'm still here. Oh my God, yeah, because remember unless
the other person hung up, whoever.
Speaker 2 (25:38):
Called hung up, that's so freaking.
Speaker 1 (25:43):
Have never been so scared in my whole life. Then
eventually they had hung up, and my mom quickly called
my uncle, who lived you know, a few blocks away,
and said, look, I get I got this prank call.
We're really scared. And then about ten minutes later we
heard a knock at the door. Anyway, we didn't know
what was my uncle, so I fucking freaked out. I
running got a tennis racket. I would have given about nine,
(26:06):
and I remember you hit him with the tennis racket. Anyway,
we opened the drawer and it was my uncle and
he stayed the night. And then the safety of knowing
he was.
Speaker 2 (26:14):
There, Yes, made you feel better.
Speaker 1 (26:16):
Yeah, I'll never forget that, and never forget that feeling
of being so feeling so unsafe in my own home.
Speaker 2 (26:23):
Which is like just the worst, because I feel like
as a mum, it is like your job toltally your
children feel safe, and so whenever that kind of comes
up for us, I just I hate it. I really
a ha so much.
Speaker 1 (26:42):
And I get guilty, you feel that I don't want
to put this on you, but them seeing you up.
You sick a lot of the time. Of course, naturally
they would worry. However it shows up.
Speaker 2 (26:52):
Look. But still at the end of the day, any
robber came to my house, I would have sort that
person out, Okay.
Speaker 1 (26:59):
Lest I to migrain Yeah, I would freeze under my
doner and leave.
Speaker 2 (27:04):
The kids to probably would.
Speaker 1 (27:09):
Anyway, thank you Alex for your message.
Speaker 2 (27:12):
I don't know if that's been any help, Alex, but
maybe try the one to ten and also, Alex, just
check because I when I when we decided it was
the right time to tell my eldest daughter about my MS.
I got a book and there was like a kid's
book about explaining what you know what my what MS
(27:33):
is in a way that kids can understand and not
feel scared. So perhaps you could find a book that
could explain it.
Speaker 1 (27:43):
Yeah, this is what I wanted to ask you, though,
Because you are physically going to change at some point,
like your hair, which is a big part of you,
what are you thinking about telling them about that?
Speaker 2 (27:55):
Look? I would like to be really honest. One of
the biggest reasons that I didn't want to do it
still don't to want to do it, is because I
am really worried about how it will affect the girls
and my oldest in particular, And so I don't know,
(28:18):
Like I'm not going to pretend I know how to
handle that and what to do. So I think when
the time comes, I will have to, you know, have
to talk to a professional about how I talk to
her about that and explain it to her.
Speaker 1 (28:33):
I wonder, if I know this is very what are
you going to say? But when my mum went through treatment, mate,
there are some fucking epic weeks out there. Like my
mum's wig was so good she would have people go,
where do you get your hair done? It looks so real?
Could you get rid of your hair and just get
a wig that looks exactly the same as your hair?
Speaker 2 (28:53):
Yeah? Yeah, And I've you know, I've definitely been looking
into that. You can get like human hair. You know what,
don't you wish? Human hair is not good? Why?
Speaker 1 (29:02):
Because you have to wash it all the time. It's
really high maintenance. You don't want human hair. I've been
through this whole process.
Speaker 2 (29:08):
God, I didn't know this. I thought that looks the
most real though.
Speaker 1 (29:12):
No, the other ones look like you can get incredible
ones that look very very real, but you don't have
to wash them. You literally just take it off and
you can put it on, take it off and it
won't lose its shape even though it looks really natural.
Where human hair you have to style it constantly and
it won't be like styling your hair. It'll be really hard.
Speaker 2 (29:31):
Okay, Oh that's that's interesting. I didn't realize that.
Speaker 1 (29:35):
Yeah, epic shops in weak shops in Sydney, but we
like I hated that process of going for mum, but
it almost seems to be like what do you want
to be now? Like it was where I know you
would want the exact same style, but Mum would just
get slightly different styles and they were fucking epic.
Speaker 2 (29:53):
I just like, I don't know, I don't know if
i'm their mental No, of course, yeah, and we don't
need to t I've really thought like like how do
I go swimming and how do I exercise? And my
husband James is like, oh, just you know, you don't
have to wear a wig when you do that stuff,
and I'm like, I don't know if I would be
(30:16):
comfortable like just rocking a shaved head. Maybe I'll change
my mind, but.
Speaker 1 (30:21):
Yeah, who knows. And It's not something you have to
think about now, you know what. It is going to
be one of those things that you just deal with,
like with everything, because you're just going to have to.
You'll figure a way to get through it.
Speaker 2 (30:31):
Yeah. Oh, for fuck's sake, on that fun note.
Speaker 1 (30:34):
On that fun note, we're going to get out of here,
but we love hearing from you like we did for
Alex today. Shoon Tel Podcasts is where you can find us.
We've had so many beautiful messages and we're definitely going
to try to get through playing them all because every
one of them such a great topic. But send us
a message, either just type it out or send us
a voice memory, and we'd love to hear from you.
Shaw and Tel Podcasts and we'll be back real soon.
(30:58):
Guards By
It's Icronic time with Brooken Monty. Thanks for joining us
on our Chronic ill podcast.
Speaker 2 (00:16):
Don't change your day, Joel, will you? Maybe?
Speaker 1 (00:19):
I certainly won't. It is it's Brooken Monty and we
both have a plethora of chronic illnesses. That's why we
decided to do icronic for you. If you've got a
chronic health issue or you love somebody who does, yes.
Speaker 2 (00:33):
We hope it makes you feel like you've got a
got a buddy in us, someone to yes, to listen
and understand and feel where you're at.
Speaker 1 (00:43):
Yeah, totally, because we often chat about how isolating and
lonely it can be having a chronic health issue. Like
even though Brook and I both you know, Brook's got
a mess, I've got chronic migraines, We've both got chronic fatigue.
We connect over it, but also our own I hate
the words very different as well, like everyone's just so
fucking different. Yeah, it's hard about.
Speaker 2 (01:04):
It, that's true. But then, but then there are so
many similar themes, you know, like because you know, whether
you know, whether it's like guilt with your family, or
it's like a body image thing, or you're you know,
feeling like financially you're a strain. You know, all these
kind of things are pretty universal, I think as to
(01:25):
chronic illness.
Speaker 1 (01:26):
Totally, of course they are what joys. Anyway, our last episode,
we were talking about Brookie, let's get an update from
both of us, because you had spoken to your neurologist
and she said, you're a candidate for stem cell transplant.
What's the update.
Speaker 2 (01:46):
Yeah, so I have had an appointment with the person
that heads up the stem cell transplants for MS in
Australia and yeah, so she is kind of run through
how it would work and has said that yes, I'm eligible,
which is a weird thing because when she you know,
(02:08):
when she told me, yes, you're eligible to do this,
I was like, oh, that's amazing, Like I'm so lucky,
because you know, hundreds and thousands of people go overseas
to have this procedure done because they don't fit the criteria.
So on one hand, I'm like, I'm so lucky. But
then on the other hand, I'm like, I don't want
(02:29):
to do this, Like I really don't want to do this. Yeah,
but yeah, you know, like I obviously no, long term
it's the best thing to do. So I'm meeting with
her again next week and then we'll come up with
with more of a plan.
Speaker 1 (02:45):
Do you think that one of And you know, I
was telling Sam, I'm like, Brooks, a candidate for this.
Three medications had to have not worked for you, and
so that's how you were eligible for this. But yeah,
like you said, your benchmark move, do you know what
I mean? Like, at some point this was your worst
case scenario and now it's your best Like what the fuck?
Speaker 2 (03:06):
Yep? Yep. And there was a point over the last
couple of weeks where I thought that maybe I wasn't
going to be eligible, and then I found out no,
you know that I was, And I was like, oh
my god, thank you know a few thank god. And
I'm like so excited when I, you know, find out
that yes I'm eligible, But like what am I excited for?
Like to get chemo and lose my hair and be
really sick for a couple of years. Like sound like
(03:29):
a lot.
Speaker 1 (03:29):
Of fun, I know, But there's still an option. I think, well,
there's options available, there's still hope involved. And when we
don't have hope, when you're chronically ill, that's when it's
really hideous. But yeah, like I was saying, to Sam
and I was telling him you were eligible. I said,
one of the things that is the most confronting about it,
(03:50):
even though it's going to be such a full on procedure,
is the losing the hair for you, which I totally get, Like,
there's something so symbolic about our hair, and I know,
out of all the things, it is the least of
what actually matters, but it's almost the worst.
Speaker 2 (04:10):
Yeah, it's wow. It's almost a little embarrassing to admit
that's that kind of plays into your reasoning, but it does, like,
of course, you know, of course, you do what you
have to do, so it's not an option to keep
your hair. Some of you guys have reached out and said, oh,
you know, you can use the cold cap to save
(04:31):
your hair. Unfortunately, for this kind of transplant, you can't
use the cold cap, which I thought was really interesting.
I've found out that you can only use that cold
cap to save your hair if you're doing chemo that's
like in a specific place. So if it's like breast cancer,
for example, and they're targeting your breast, then you can
use the cold cap. But if it's if they're targeting
(04:53):
your whole body, like if you had a blood cancer
or something like that, then you can't use the cold cap?
Speaker 1 (04:59):
Why why you use the cold cap? Like it does
actually do.
Speaker 2 (05:03):
It's something like it interfares like I'm not getting with
technically right, but it's interferes somehow with your brain. And yeah,
and because of that, you can't you can't use it.
But if you didn't need to access your brain, then
you could use it. Yeah, but anything whole body is
(05:23):
a no.
Speaker 1 (05:25):
You what looking at this procedure that you're about to have,
which you outlined really thoroughly in a previous episode, which
is extremely huge, you also found out the process is
quite a lot longer than you thought.
Speaker 2 (05:38):
Well in terms of the recovery, Yes, and it's different
for everybody, so you kind of don't know where you'll fall,
you know, with that. But I was told, you know,
some people can recover within six months and other people
it's like two years. So it just kind of depends
how you respond, I guess. So, yeah, it's quite a
(06:01):
it will be quite a long process, I imagine.
Speaker 1 (06:03):
Okay, so what's next steps?
Speaker 2 (06:05):
So I will meet with her again next week and
then I imagine we'll have more of a plan in
place in terms of when and all those kind of details.
Speaker 1 (06:16):
Do you just kind of want to get it started
now or it's yeah, it's.
Speaker 2 (06:21):
Such a funny thing. Like when I first had the
conversation with them, they had mentioned they we could do
it as early as August, and my first reaction was
oh my god, no way, like there's zero plans. That's
way too soon. But then after I left, I was like, oh,
maybe that is the best option, because I'm finding myself
(06:42):
thinking about it all the time.
Speaker 1 (06:44):
Of course.
Speaker 2 (06:45):
Yeah, and you know, and you know, the way they
put it is, you know it's better to do it
sooner than later, and you know, in case you do
relapse and then you end up with more disability, it's
obviously better to do.
Speaker 1 (06:55):
It sooner as soon as you can.
Speaker 2 (06:57):
Yeah, So I feel like, yeah, I've kind of come
around to accepting that it might need to be soon. Wow.
Speaker 1 (07:08):
All right, Well, I guess we'll check in again after
your next appointment and you might have dates and a
little more infra about it.
Speaker 2 (07:14):
But fuck, and also you you've had a huge week.
Speaker 1 (07:19):
Yeah, well the other week, Yeah, I went to pain
rehab and this was like discussed quite a while ago
with my neurologist and then I went and saw a
pain specialist who did the nerve oblation where they like
fry your nerves so you don't have pain signals to
your head. And they were like, I think you should
do pain rehab and I was like, to me, that
(07:41):
is the last case, do you know what I mean?
That's where there's nothing else you can do for yourself.
You just go to learn to manage the pain. So
I resisted it for so long because I'm like, no,
I'm not there. I'm not there.
Speaker 2 (07:53):
Yeah, it almost feels like you've given up.
Speaker 1 (07:55):
That's exactly what it felt like to me. And it
was depressing to me because I'm like, is there nothing
that's going to work for me? Like? Is this where
I'm at?
Speaker 2 (08:03):
He is just mabe put up with it, yeah, putting up.
Speaker 1 (08:06):
With it, but figuring out how to manage it better.
So it really scared me and I was like, I
really don't want to do this anyway. Last time I
was in hospital, they were like, look, you really should
do it. And amazingly, my migraines have been under control
since that nerve ablation. I've had six months. Yeah, so
that has I haven't had six months in years. Let
(08:26):
alone last year where I was in bed literally ninety
percent of the time. So it's been quite amazing.
Speaker 2 (08:31):
But so I could I just ask have you had
one of those nerve oblations before?
Speaker 1 (08:36):
Never?
Speaker 2 (08:37):
Okay, so this was the first one that you had
six months ago?
Speaker 1 (08:40):
Yes, And she said it like it will last about
six months. So again my anxiety flares up because I'm like, fuck,
I'm nearly at the end of the six months. Are
they going to come back? So anyway, I spoke to
Sammy because it's quite a commitment, like I've got three
kids and it's a two week stint to go into
rehab do this rehab, and I decided to do it
over too lots. So I've done one week and I
(09:03):
went in and it's in a hospital setting, but it's
all mind body connection.
Speaker 2 (09:10):
Okay, So can you just set it? Can you paint
the picture for me? Like, what's the room? Like?
Speaker 1 (09:15):
The room is like a hospital room. So I walked
in and I cried because I'm like, oh my god,
I knew it was going to be probably a hospital setting,
but I'm like, I'm going to be in here for
a week and I've got the white walls and you know,
the wooden cupboard. They had a blanket on the bed.
So that was the only difference between between that and
a hospital in there's not all the kechtic equipment like
(09:37):
a hospital, but it's laid out like a hospital.
Speaker 2 (09:39):
Okay.
Speaker 1 (09:40):
And then each day you get you have a schedule
for the week and you'll have a physio hydrotherapy and
so I was looking at that shit, going this is
I don't need this, Like I can walk, I do
I walk, I do pilates. I don't need any of that.
And then each day you do a class and it
might be on pacing or breathing and mindfulness or an
no other one was medication. So each day you have
(10:03):
just one session with a specialist and then one class.
So I also looked at it and was like, I
have so much spare time here. This is insane, Like
I'm going to be brought out of my brain. So
the first day I arrived, I had physio. It's very
different physio. None of its hands on and all of
the specialists work together, like they have a meeting every
(10:23):
day about each patient, and so.
Speaker 2 (10:26):
So what do they do in a session if you
don't So it.
Speaker 1 (10:29):
Was like all of them kind of incorporate meditation and breathing.
Even the physios and she kind of looked at how
I sat and talked to me a bit about my posture,
talked about breathing, how to stand up and stuff like that,
and I was like, okay, still really hesitant. Then went
into a first class and we did a breathing exercise
(10:50):
and I was just like, this is horseshit. Still I've
done this stuff. I've meditated before. Then Anyway, as the
week went on, I'm like, I actually haven't done this
I meditate, but I have it on my to do
list to mark off, like yeah, I'm never present or
in the meditation. I'm like, meditating is good. I'm going
to do this, I'll mark it off. Like I realized
(11:11):
during that that I have it as a job as
opposed to it really helping me. So everything they teach
has a science behind it. But it took me four
days to drop in because I was like, I've done
all this, this is horseshit. And I said to one
of the people taking the class, I said, I'm really
resisting this and she's like, is it not medical enough
for you? And I said, yeah, I think it's that
(11:32):
I think I was coming here to go I'm going
to alter my medication. I'm going to have kind of
a quick fix, and it made me realize this is
a lifelong Yeah, there's no cure for this, and there's
no quick fix. And it took me until day four
where I dropped in and I was like, Okay, I
can see this is actually going to be of benefit
to me.
Speaker 2 (11:51):
When you talk about the meditating aspect, how was the
way you were meditating there with them different to how
you would meditate at home.
Speaker 1 (12:00):
I think just hearing it from a professional and them saying,
you know, we live in our so we've got a parrot.
That's getting a bit technical, but a parasympathetic nervous system
and a sympathetic nervous system, And the sympathetic nervous system
is where I own fright, fight or flight constantly, which
is where I live, and where when you go over
to the parasympathetic nervous system is where your healing does.
(12:22):
Where you're healing is your resting is. And so it's
constantly trying to get over to there more often. And
I think even having that in my mind of when
I'm feeling stressed, going I'm in my sympathetic how can
I get into my parasympathetic and that might be I've
learned like a box breathing meditation, which everyone should look
that up.
Speaker 2 (12:42):
Yeah, I do that, and my husband does that. James
does that with our oldest daughter eating per lot. Yeah,
it's really good, and I learned it for her, but
now I use it myself, yeah all the time to.
Speaker 1 (12:55):
Yeah, where I've been using that. So it's breathing in
for say four or five deep breath, holding for four
or five, letting it out for four or five, and
it's picturing a box. Simple, I knew it, but it's
using it and actually dropping into it. And then I
do guided meditation. And then another physio taught me like
a body thing where it's kind of like your tense
(13:16):
up and then release tense up and release different parts
of my body. And I find that all of those
combined have been really helpful. Again, it sounds like nothing.
Speaker 2 (13:28):
Yeah, can you do like a little video or something
and like show us how you tense up and release.
Speaker 1 (13:35):
Yeah, it's kind of difficult because it's so subtle. It's
almost like tensing and muscle releasing. And then I go
through different parts of my body. And I also realize
how my shoulders are always up at my years, so
constantly they're like, slide your shoulders down your back, and
so I feel that myself sliding them down, and my
(13:55):
jaws always clenched. So I'm trying to it's just making
me more conscious. Yeah, And I got home from rehab
and I had the best week I've had in years,
literally years. I know it can't be linked because I
know this is all a slow burn, but I had
so much energy and I didn't have even a headache,
(14:17):
and I'm like, this is what it feels like to
be normal, Like I just.
Speaker 2 (14:21):
Don't go getting off, don't go getting all normal on me.
Speaker 1 (14:24):
I'm like, well, I can't do a chronic if I'm
fixed anyway. Of course, I feel like the last couple
of days have just been absolutely exhausted, but it's so
worth doing so for anyone who has chronic pain, it
is so worth looking at. I was so anti it,
and it took me literally four days before I went okay,
I can see the benefit of this, and then I'm
left on the fifth day, but I can't wait to
(14:46):
get back now.
Speaker 2 (14:47):
And it also the next bit, Yeah, amazing. It also
goes to show just how like connected we are, like
how connected our mind and body really are.
Speaker 1 (14:57):
It's so connected. And I always knew do that, but
I don't think I got to the extent. And I
realize one of the things I'm trying not to do
is get. I get I'm quite all or nothing, And
I find myself meditating all the time, and I'm like,
this isn't sustainable, Like you're doing this so intensely that
it's not going to be doing what you want it
(15:19):
to do. So it's almost like what I've learned I
have to just put into my day as I can continually,
as opposed to going, oh my god, Okay, i'm feeling stressed,
I'm going to lie down and meditate, because that's not
real life. I'm not going to be able to do
that all the time.
Speaker 2 (15:34):
And also meditating can look really different for different totally,
So I'm not great at all at meditating. I do
like a really if I'm feeling anxious about something, I
might do like a quick, like five minute kind of meditation,
But other than that, it's just it doesn't it's not
for me. But like I might get that kind of
(15:55):
meditative state by like going, you know, through a swing course.
Speaker 1 (16:00):
Something totally and everyone does it differently. I just guess
it's having all those tools in your tool about to
pull upon because even in like I've been home for
a week and the week that I was there, I
can tell a difference like I actually can, and so
it makes if you can see a difference, it makes
you want to do it more. You know, I'm like, Okay,
(16:20):
I can stick to this. So anyway, I've got another
week coming up, and I don't know if it's just
been luck that I've had a good week or if yeah,
it has been coming into play. But like you said,
how can it not like our mind body connection, And
I realize how stressed and anxious I have been Like
my body they say, like your body gets locked, it's
(16:40):
like stuck, and then your you know, your mind is
and then your whole body does a coping mechanism where
it all tenses up to protect you. And so it's
kind of undoing all that it's made. It's interesting.
Speaker 2 (16:54):
Yeah, I'm really proud of you. You went and you
gave it a good shot.
Speaker 1 (16:58):
Even I gave it a good shot, and I'll keep
doing it. But anyway, we always ask to hear from
you guys, and I thought this voice memo we got
was quite interesting book, because especially with what you're facing with,
really something that's going to take over your life for
a couple of years. Yeah, So I wanted to ask
you this question and hopefully also help our beautiful listener Alex.
Speaker 3 (17:22):
Okay, Hey, girls, So I wanted to ask you both
how you go about explaining your chronic fatigue and your
need to have these rests to your children, because my son,
he's at an age where he understands and he worries
(17:43):
about me, and he sort of asks, oh, you know,
are you feeling better today?
Speaker 1 (17:48):
Mom?
Speaker 3 (17:48):
Or you do you need to lie down? Do you
need a rest today?
Speaker 2 (17:52):
Mom?
Speaker 3 (17:53):
And that sort of makes me worry about him that
I'm putting on all of this extra stress on him,
and I just don't know how to sort of, you know,
make it a little bit easier for him to understand
and I guess not worry about me, and he shouldn't
really be worrying about me because he's a child. But
(18:17):
I just wanted to know how you guys deal with
that side of.
Speaker 1 (18:21):
Things with your own children.
Speaker 3 (18:23):
By the way, love you guys.
Speaker 1 (18:24):
Thank spapeh.
Speaker 2 (18:27):
Thank you, Alex, I won't lie. That kind of breaks
my heart a little bit. And I really feel that, Alex.
I really really feel that because my oldest in particular
is a real thinker and warrior, and if she can
see that I'm not doing well, it will really stress
(18:48):
her out. So I don't know if this would help
you at all, Alex, but we have this system where
Edie will set my oldest. Edie will say, how you're
feeling out ten? Mom? I think I've mentioned it on
here before. And then because what I was doing for
so long was I kept saying, Oh, I'm fine, No,
(19:09):
mommy's fine, I'm good, No, I'm not tired, and no,
I'm great, But then she can see that I'm not.
So I'm here telling her I'm fine, I'm great. But
then she can see, but you're not really walking very
well today, And so I was told that is really
confusing for her, and it's much better to be honest
(19:30):
than try and hide it, because if you try and
hide it, she doesn't trust what you're saying, and that
then leads her to think the absolute worst. So we
have this system and she'll say, how are you out
of ten? And I. You know, there are some days
when you know I'm not having a good day, and
I'll say, look, i'm at seven today or a six today.
(19:53):
But then she can see like that, I'm still doing everything.
You know, I'm still taking her to school and picking
her up, and we're still you know, I'm still making dinner,
and we're still playing board games over you know, over
dinner and things. So I say, look, it's not amazing
today like six or seven, but you know, hey, I'm
still doing all these things. So I think that's been
(20:15):
really good for her. And I guess in some way
gives her some control as.
Speaker 1 (20:21):
Well, yeah, because she knows where you're at, as opposed
to guessing or in mind making up like Mum's fucked,
Mum's fucked.
Speaker 2 (20:28):
Like yeah, yeah. And you know, there are some days
when you know I might not be having a great day,
and she might ask me like ten times a day,
and I feel like my heart breaks a little bit
more each time she asks that. But then I think
this is just the way our life is. I can't
(20:49):
do anything about it. And in the end, I think,
you know, she is going to be a more caring
and more empathetic kid because of this. You know, I
have to ask her sometimes for help with things, and
sometimes that feels really like it just feels like it
goes against the natural.
Speaker 1 (21:07):
Grain of things, you know, totally, yeah.
Speaker 2 (21:12):
You know, but now she will kind of do those
things without even asking because she knows. I will have.
Speaker 1 (21:18):
Very unique though, because my parents don't do that like
they have. This is how I am.
Speaker 2 (21:24):
I wonder if it's different between boys and girls.
Speaker 1 (21:26):
I think so. I think it depends on the person.
But I also think that, yeah, Edie's quite special. I
don't know if there's many kids that would go, you know,
how are your mum? How can I help you? Especially
when they're so young. Yeah, because my boys, I feel
it's very different. They're so used to me being unwell
that I don't think they actually know any different.
Speaker 2 (21:49):
It's kind of like it's like the norm almost, Yeah.
Speaker 1 (21:52):
It's the norm. Like they'll come, you know, I'll be
like I have to have a sleep, like they know
every day I have to have a sleep or you know,
but even when I went to hospital for a week
or whatever, I get home and they just don't acknowledge it.
Speaker 2 (22:03):
It's to me, right, like this is strange.
Speaker 1 (22:07):
But I also feel like that's their possibly coping mechanism.
And like as hard as it is knowing it is
anxious and worried about you, my boys hide it, so
I don't know how much it's actually affecting them.
Speaker 2 (22:21):
And have you have you ever sat down, because you've
been this way for their whole life, have you ever
sat down, like with your elders backs, for example, and said, like,
mummy has this thing called chronic migraine, this is what
it is. Like you've done all that, right, Yeah.
Speaker 1 (22:39):
I have over the years, but it's probably a good
reminder that I should sit down and do it again. Yeah,
because I think to them, I just have headaches and
I'm tired all the time, where they don't quite get it.
But then I don't want to explain the extent to
them because I don't want there to be more even
if it's subconscious worrying. Of course, like I so vividly
(23:00):
amber as a kid if my mum would come home
sick from work, how unsafe I felt, Yeah, because it
was my safety that was not there, Like I had
to step up to protect her. And it's a hard
thing as a kid to then switch off. And also
as with a single Mum, I went into that protective
mode and you become almost the adult and the care
(23:22):
even though they don't need it. Like what Edie's doing
is her stressing and worrying and trying to look after you,
is trying to protect you, and yeah, yeah, look after you,
but she can't. She's a kid and there's a pressure
on her.
Speaker 2 (23:35):
And when you just mentioned safety, that really strikes a
call with me too, because James is away for work
a lot, and so it's often the girls and I
here alone, and when he's away, she gets quite anxious
in the evening before bedtime, and she can't really articulate why,
(23:56):
but I know, and we've kind of talked it through
in the past that in her little mind, she thinks,
what if something happens to me, Like what if a
Robert comes in the house and it's just Mum and
I and my little sister and mom won't be able
to fight them off or something. But that's that's what's
(24:17):
going through her mind. And I have to remind her
subtly when he's away that I'm good, I've got this,
like you're safe. Yes, yeah, yeah, this.
Speaker 1 (24:28):
Is like just a random story I remember from when
we were younger, because it was sometimes like that for
me too, because I would be like it was only
ever Mum, my sister and I and I would always
feel safe at my grandparents because par was there and
the way the house was set up, I knew people
couldn't get in. It was like in an apartment. But
(24:48):
I remember so vividly one night because I slept with
Mum until I was like thirteen. There's another fucking sign
of anxiety.
Speaker 2 (24:56):
But I sp I actually kind of love that.
Speaker 1 (24:59):
Yeah, I had h that was sleeping with my mom. Anyway,
we were laying there and we woke up to the
phone ringing. This is when there was only old school phones,
and so it was next to Mum's bed and she
picked up the phone. It would have been about midnight,
so we were fast asleep, and somebody on the end of
the line goes hello, a male voice, and my Mom's
(25:19):
like hello, Hello, like she was starting to get scared,
and I woke up and could hear, and he's just
kept going hello, and then my mom hung up, and
then I was like, what's going on. She's like nothing,
and then she picked up the phone again and he goes,
I'm still here. Oh my God, yeah, because remember unless
the other person hung up, whoever.
Speaker 2 (25:38):
Called hung up, that's so freaking.
Speaker 1 (25:43):
Have never been so scared in my whole life. Then
eventually they had hung up, and my mom quickly called
my uncle, who lived you know, a few blocks away,
and said, look, I get I got this prank call.
We're really scared. And then about ten minutes later we
heard a knock at the door. Anyway, we didn't know
what was my uncle, so I fucking freaked out. I
running got a tennis racket. I would have given about nine,
(26:06):
and I remember you hit him with the tennis racket. Anyway,
we opened the drawer and it was my uncle and
he stayed the night. And then the safety of knowing
he was.
Speaker 2 (26:14):
There, Yes, made you feel better.
Speaker 1 (26:16):
Yeah, I'll never forget that, and never forget that feeling
of being so feeling so unsafe in my own home.
Speaker 2 (26:23):
Which is like just the worst, because I feel like
as a mum, it is like your job toltally your
children feel safe, and so whenever that kind of comes
up for us, I just I hate it. I really
a ha so much.
Speaker 1 (26:42):
And I get guilty, you feel that I don't want
to put this on you, but them seeing you up.
You sick a lot of the time. Of course, naturally
they would worry. However it shows up.
Speaker 2 (26:52):
Look. But still at the end of the day, any
robber came to my house, I would have sort that
person out, Okay.
Speaker 1 (26:59):
Lest I to migrain Yeah, I would freeze under my
doner and leave.
Speaker 2 (27:04):
The kids to probably would.
Speaker 1 (27:09):
Anyway, thank you Alex for your message.
Speaker 2 (27:12):
I don't know if that's been any help, Alex, but
maybe try the one to ten and also, Alex, just
check because I when I when we decided it was
the right time to tell my eldest daughter about my MS.
I got a book and there was like a kid's
book about explaining what you know what my what MS
(27:33):
is in a way that kids can understand and not
feel scared. So perhaps you could find a book that
could explain it.
Speaker 1 (27:43):
Yeah, this is what I wanted to ask you, though,
Because you are physically going to change at some point,
like your hair, which is a big part of you,
what are you thinking about telling them about that?
Speaker 2 (27:55):
Look? I would like to be really honest. One of
the biggest reasons that I didn't want to do it
still don't to want to do it, is because I
am really worried about how it will affect the girls
and my oldest in particular, And so I don't know,
(28:18):
Like I'm not going to pretend I know how to
handle that and what to do. So I think when
the time comes, I will have to, you know, have
to talk to a professional about how I talk to
her about that and explain it to her.
Speaker 1 (28:33):
I wonder, if I know this is very what are
you going to say? But when my mum went through treatment, mate,
there are some fucking epic weeks out there. Like my
mum's wig was so good she would have people go,
where do you get your hair done? It looks so real?
Could you get rid of your hair and just get
a wig that looks exactly the same as your hair?
Speaker 2 (28:53):
Yeah? Yeah, And I've you know, I've definitely been looking
into that. You can get like human hair. You know what,
don't you wish? Human hair is not good? Why?
Speaker 1 (29:02):
Because you have to wash it all the time. It's
really high maintenance. You don't want human hair. I've been
through this whole process.
Speaker 2 (29:08):
God, I didn't know this. I thought that looks the
most real though.
Speaker 1 (29:12):
No, the other ones look like you can get incredible
ones that look very very real, but you don't have
to wash them. You literally just take it off and
you can put it on, take it off and it
won't lose its shape even though it looks really natural.
Where human hair you have to style it constantly and
it won't be like styling your hair. It'll be really hard.
Speaker 2 (29:31):
Okay, Oh that's that's interesting. I didn't realize that.
Speaker 1 (29:35):
Yeah, epic shops in weak shops in Sydney, but we
like I hated that process of going for mum, but
it almost seems to be like what do you want
to be now? Like it was where I know you
would want the exact same style, but Mum would just
get slightly different styles and they were fucking epic.
Speaker 2 (29:53):
I just like, I don't know, I don't know if
i'm their mental No, of course, yeah, and we don't
need to t I've really thought like like how do
I go swimming and how do I exercise? And my
husband James is like, oh, just you know, you don't
have to wear a wig when you do that stuff,
and I'm like, I don't know if I would be
(30:16):
comfortable like just rocking a shaved head. Maybe I'll change
my mind, but.
Speaker 1 (30:21):
Yeah, who knows. And It's not something you have to
think about now, you know what. It is going to
be one of those things that you just deal with,
like with everything, because you're just going to have to.
You'll figure a way to get through it.
Speaker 2 (30:31):
Yeah. Oh, for fuck's sake, on that fun note.
Speaker 1 (30:34):
On that fun note, we're going to get out of here,
but we love hearing from you like we did for
Alex today. Shoon Tel Podcasts is where you can find us.
We've had so many beautiful messages and we're definitely going
to try to get through playing them all because every
one of them such a great topic. But send us
a message, either just type it out or send us
a voice memory, and we'd love to hear from you.
Shaw and Tel Podcasts and we'll be back real soon.
(30:58):
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