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