Hello, everybody, it's not Malam Monty, It's Monty.
We're their friend.
Brook Hey, the og the Show and Tell.
The Show and Tell og.
So Brooke and I started Shoon Tell as a website probably twelve years ago now and the website's not anymore. But from that it evolved into a podcast. We did live eventschooky, like, how awesome was that time?
Really?
Oh my god, it was the best time. We had so much fun. Yes, and I feel like we were pretty early, you know, in terms.
Of the whole blogging thing. Yes, and we had a ball.
You know.
There weren't really any rules then, and we had I know, we just.
Had no idea what we were doing.
And we started this beautiful website where we'd interview well known women and put the videos up on the site. And Stacey joined us as well, who's still a part of Show and Tell. And then mal senting a written piece and we were like, oh my god, this girl's an amazing writer. So she joined the team and it was kind of the four of us with little add
ins here and there. A Karla was with us for a while and we just ran this beautiful site and then kind of people started consuming content differently, so we closed it down and just podcasting it. But today's it's obviously a different podcast. And Brooke, who I call Chuck, you and I have been talking about this for a while and we were like, let's do a podcast. No, let's not, okay, let's do one, and so we've decided to do it for ourselves. I'm already going to get emotional, I know, how weird.
I was like, I'm not going to cry today.
But also for you, if you have chronic health issues, or you have a disease, you have anything that's chronic with your health, whether it's mental health or physical health. If you know anyone, maybe pass this episode onto them. But also for you, if you do, maybe you want to pass this episode onto people in your life so they can understand.
What you were going through.
So obviously I've spoken about my migraines on the podcast before, but probably not to the extent as well as my chronic fatigue. But Brookie, let's start with you and then in kind of your backstory, because everyone's even though we have very different things that are going on for us, we really relate to each other on so many levels. And I think this is for any form of chronic pain or disease. It's so different to everyone, but there's so many similarities in how you feel.
Yes, yeah, I couldn't agree more. I think with any kind of chronic illness, yes, they might all be very different, but there are so many similarities in terms of the emotional side of things. And so I think that's where I find it so helpful and cathartic talking to you. You and I talk a lot on the phone. We're
in different states. I'm in Sydney, your own Byron, but we talk a lot on the phone when we're having a bad day and have a good event, because I know that you understand what I'm going through, even though it's not exactly what you're going through. You can relate and you understand, and it's so helpful to have that
because most people don't. And it's not that you know, they don't try or they don't want to, but I think it's hard to understand what it's like if you're not living that particular life totally.
So when we were like kind of I guess nearly your all since I guess you went through puberty, did you get dometriosis? Like, how does that come about? And talk me through that, because I don't have and do and I know so many people do, but can you talk us through that as one of your plethora of illnesses.
I'm lucky be I just hit the jacktors my health. Yeah. So I got my period quite early.
I was ten, and then probably not long after, only kind of three years after or so, So around yeah, thirteen fourteen, I started to have really painful periods and get quite like really ill, like so nauseous, the big endo, belly bloating. Occasionally I would vomit and just have those awful sharp pains all the time. And that's hard when you know you're a.
Kid and you're a school because ten is so young to get your period anyway, let alone.
You start doing. Yeah, my daughter's almost ten now, and so I'm like, oh.
My god, that's a baby.
Yeah, she's a baby, that's right.
So yeah, and I was probably about seventeen or so, I think when I had my first laparoscopy, and then I've just kind of had them my entire life, and it's come back in different different ways throughout different stages of my life.
I'm now forty one.
After each pregnancy, after each birth, it kind of manifested it a different way as well. Also, I stopped getting my period when I wanted to start trying for a baby my first child. I went off the pill for years and I just never got my period again, but still had endometriosis. So for a while, I was like, oh my god, what's happening, Like thinking like, oh, I've got gastro or something, you know, yeah, because you're so sick.
And would it happen once a month or constantly.
It would be really random times, so you could never kind of put like, okay, there was no rhymal reason to it. Ever, sometimes it would happen at the time of the month where I should have my period, but other times it would flare up at other times during the month, which made it all so confusing. You don't actually have a period. It was really complicated and confusing.
But you know, I've been lucky. I've had lots of you know, really good specialists over the years, and each time they've gone in, there's been loads of endo for them to burn out. So we've done that. And then I had my second daughter five years ago.
And you went through IVF with both of those bases, which was pretty intense to I remember all of the stuff that you had to do to get the girls, and it was like, oh my god, do you think that was linked to the endo?
Yeah, So part of the reason I don't get a period is because I don't ovulate.
So I didn't know that, didn't you.
I mean I probably did, but I'm just like a shit friend who forgets important information right now.
Terrible friends, terrible.
Yeah, So that's that's so, that's why I had to had to do IVF.
Yeah.
And I thought after my second daughter, who was born five years ago, that I would just have a hysterectomy after her and just get it all taken out because I don't need it or want it. But then it's it's been really good for such a long time, so I haven't.
I haven't gone down that path yet. Okay, so we'll have to yeah, wait and see.
And so then you get another surprise diagnosis. So you're dealing with your ENDO, but it's quite manageable. But then talk us through what's happened in the last couple of years.
Okay.
I don't know why I feel all emotional now because I'm talking to you.
Yeah.
So I went to bed one Saturday night, you know, healthy, happy, care free, and then woke up the Sunday morning and was just numb down my right side.
And I'm very much.
Of the attitude, you know, like, oh it'll be fine, I'll be fine.
You're very much like that.
Yeah, so kind of just thought, oh, I must have hit a nerve. I was out with my girlfriends and not before, and I thought, maybe I just like hit my leg or I did something, and you know, it'll be fine. And then as the day went on, it started to get a lot worse. And then I couldn't really walk, walk or go to the toilet. And then I knew that something was something was up. I did a telehealth with my doctor, who said, you need to go straight to emergency.
Like I googled it.
I'd looked up, you know, all typed in all the symptoms and everything said it was it would either be a stroke or MS. And I felt, well, I'm not having a stroke and I don't have MS. So I just thought, you know, it wasn't anything significant, but went to emergency like it was probably I don't know, at nine o'clock in the morning, and then by eight o'clock that night, Yeah, they said to me, Yeah, you have MS, which is multiple sclerosis.
Don't make me for.
I just like think of you in the hospital getting that diagnosis and going, what the fuck.
Does this mean?
Because I think for people like me, MS was we used to do readers on for it, you know, at school, and that's kind of all I knew about it, did too.
Yeah, yeah, it was.
It was really again, I didn't know anything about it either, And it was such uncanny time. I mean because that morning the following morning when I was at the hospital, Christina Applegate was on the doing the Hollywood.
Walk of you know, getting her star on the.
Hollywood Walk of Fame, and you know, she was talking about her miss and she was walking with the cane and she, you know, she said, this is me now of you know, put on like twenty kilos, I can't walk.
And I was like, oh my god, is that going to be me?
And when they first told me, which you know, the doctor that was there was actually just so amazing and beautiful when she told me. But I said, what's going to happen? Like, am I going to be able to walk again? Because at that point I couldn't walk, And she just kept saying, I don't know, I can't tell you that, and so my like worst, you know, my mind obviously went to the worst place, which is I'm not going to be able to walk out of here.
What am I going to do? You know what? All my girls do? You know?
All of those things kind of go through your mind. And then it was probably twenty four hours later. So I kind of had that mindset and those fears for a good twenty four hours. And then I saw that the neurological team at the hospital and they kind of just kind of helped me deal with it and explain a lot more, and I felt much better after talking to them and kind of having a plan.
I'm very good with a plan.
A plan.
I think that's a huge thing with chronic health or and so MS is a disease, right, Yeah, sounds so hectic saying you've got.
A disease or it's a disease or a disability either. Yeah, good call it either.
And I think that is the thing with having, yeah, a disability, which is very confronting to except that you have that too, you know what I mean, But saying that, you know, having a plan is the only thing that sometimes gives you hope it's when you don't have a plan that things feel really hopeless, Like sometimes in between those appointments or when you're having a really bad day and you don't have a strong plan in place to go, Okay, well this maybe could get better because I've got this
to try or this to try. It feels so exists, so unbelievably hopeful hope, right, totally.
It's the hope, you know, same with you. You know, like if you go and see and you specialist and he says, Okay, well we're going to try this all this, yes, and it just gives you that little bit of hope. Okay, maybe this is going to help this all that. Yeah, totally, I think that that's yeah, that's really important. Yeah, it's really important to have that hope and to have a good plan in place.
And I'm good with a plan.
Or your producer at heart, so you like you're organized and have a plan. And so then you ended up going home and just going Okay, well, now I've got to live this life with MS.
Yeah. I remember still in the hospital.
The neurologist said to me, I'd probably been there for over a week at this point, and I was starting to walk better. But it was still a struggle, and I said, what am I going to do? Like, how do I how am I going to live my life like I can't walk properly? And he said to me, this is your life, now, this is it. So you are going to learn to walk like that. That's going to be okay, and you're going to get used to it and it's going to be fine.
And I just remember thinking, oh my god, like what that is? No, that is so mean?
Yeah, and how can you just get used to not being able to walk and being in pain when you walk?
But you know what, he was right and I did get used to it, and all those things that you know often happen with MS, you know, like for example, one of the things that has never gone away for me is my hands are I guess feel numb like pins like pins and needles and numb that I don't really have much sensation, so they get really achy and it's just it's a weird feeling to think, you know, trying to imagine your hands always having pins and needles.
And that's another thing. He said, You'll just get used to it, You'll get used to it. I was like, what the hell, I'm not going to get used to that, but then I do, and you know.
It seems I'm just amazing how we do adapt. But you go even like if I think, oh my god, if my hands had pins and needles constantly things like that would make me depressed, I know, like just the like the chronicness of it and the fact that it's never going away, I would go fuck this. You and I constantly say to you, it's quite remarkable how strong your mental health is. Mine is not anywhere near as good as yours. And I'm because things keep cropping up
for you. You'll be like, oh fuck, I think I've twisted my ankle, and then no, it's not MS related, or you know, you're finding out a lot of your endo issues are actually MS related. And the other day started seeing fucking bright lights in your eyes. And it's like what it almost now when we speak to each other is comical because it's so free.
It's such a joey like the weirdest things happen all the time, and you just are like, what like something else?
Like what the heck? Like this is ridiculous? Like I often feel.
You know, I say to you, like I feel like I'll get over something like, you know, whatever it might be, Like I've had this. I don't know if anyone listening has heard of or had or know someone who's had trigenial neuralgia. It is like the most excruciating face pain you could imagine, like all down like the side of your face, like it is I can't even describe. It's just my god, fucking awful.
But you know, you feel like you get over that and then something happens with your leg, or something happens with your arm or like there's just like you feel like, oh my god, like just give me a break now, like this is a joke.
There's nothing predictable about it. For you is so unpredictable.
But you know, then I have really good runs where everything is working and feels good, and so I just have to really remember to make the most of that time, you know, get out and walk and exercise and do things because you don't know when what's going to happen next, and do.
You find it's almost like a panic when you have good days because when I have like my good days at the moment are so few and far between where I'm not in bed, and so when I'm up, I am like a fucking mad woman, just like doing even simple things like prepping the dinner, Like it's like I'm prepping to go away and I'll freeze all food for the kids and I'll do the lunches.
It is, it's like this panic of going.
Are prepping to go away right.
Totally because I don't.
I'm like, well, if tomorrow I'm not good, I want to have made this a bit easier for Sam, who takes the line's share when I'm unwow, and which is majority of the time, and I'm like so i feel like, okay, yeah, I'm good enough. I'm going to go and do a pilates class. I'm going to catch up with this person. I'm going to do this because it's this panic, and in the back of my mind there's always this anxiety.
Of like, oh, but it's going to come back. It's going to come back.
And if I have a good day and it's time for me to go to bed, I'm anxious because I'm like, I've had a good day and I don't want this feeling to go and tomorrow I could wake up and not feel okay. So it's like this constant state of when I'm not good feeling annoyed and anxious about that, but when I am good, still having that anxiety of it going bad again. So it's like it's hard to soak up the good because you feel like, well, it's never inevitable that the bad is that this.
Is going to yes, But then but then you put so much pressure on yourself because you feel like, Okay, I feel good, so I should be doing all these things and I should meet that person for coffee because I keep turning them down because I don't I feel like chit.
Yeah, but so you try.
And do as many of those things as you can, and then often that's just not the answer.
No, it's just fructure even more, totally totally.
So it's it's such a fine balance of looking after yourself but also just getting back into normal life.
Yeah.
Absolutely, I think that's something I struggle with because you and I do talk a lot about this is because yours, you know, I'm like MS and is so full on that I feel like going I've got chronic migrain just sounds ridiculous when we chat about what you know is going on for us, and I feel like people listening to would be like, but Monty, you've just got migraines, books got mes Like, I just am embarrassed that something like migraine, which I know a lot of people suffer from,
is so debilitating in my life that takes me out of the game of life a lot of times.
But it is migraine.
It's so linked to even people get a headache, so they think they understand what migraines are, you know what I mean. So I just feel like sometimes guilty when you and I are going tip for tat with what's wrong that fucking ms and mine's migraine.
No, I honestly I hate that you feel like that.
I hate it breaks my heart when you say that, because anyone I think that's a hard thing though with migraines, Like people don't often understand the severity of what it's like to have chronic migraines, and.
You do, obviously, and it is so debilitating.
And I often, you know, when I'm talking to you, feel like you know, and we're having a big bitch and mode.
That all the stuff that's throng with us.
But I often feel the same to you, like I feel like, oh my god, I'm okay, I'm not that bad, Like you have days you can't get out of bed for you know, four or five days, Like I don't have that, So I then feel guilty that you're going through something so much worse.
And we've probably had promise each other not to compare and not feel guilty about in venting like we it was fraying when we spoke a little while ago and we just both vented, and we're like, let's not apologize
and let's do this because it's so fucking lonely. And I think that's the one of the biggest parts is like even for you and I, like we've got our different things, so it's we can chat and relate to each other, but it's only you going through what you're going through, and the loneliness of it is so fucked up because people like even Sam you know, who lives with me and looks after me everything, can't get it.
You just can't.
Like you can have compassion and empathy, but it's like, but you're not living what's going on inside me, So it's I'm fuck. We all have our own like no one can ever get anyone's shit, but it is so lonely and it's so frustrating when I see I get really jealous when I see other people out doing things and just living a normal life.
And I think this all the time, like how people just out there being like healthy and not having any hues, any healthy shoes in the world, just walking around the streets doing their things.
Like how Yeah, oh my god, I think I honestly when I see it, Yeah, are those people? They're totally those people who were just out in the back. Because I at the moment will not plan anything because I'm in such a bad cluster. I'm like, I'm not going to My calendar is literally free unless I've got a fucking appointment, because I'm like, I don't want to cancel things. I don't have the energy to go and see people at the moment and do things, do much of anything.
So I'm like, I'm just keeping it free. But I lie, like I lie all the time because I'm so embarrassed about canceling. Or somebody will organize a lunch or something and I instead of going, I'm just gonna have to play it by year and see however I'm on the day, I'll be like I can't sorry, I've got an appointment or I've got a meeting on or something like that, because I'm so over having to cancel or being that girl who's, oh, yeah, Monty's got a migraine again, Like I just don't want And.
You know, we've talked about this so much because I feel exactly the same. But you know, if I were catching up with you and you say to me, oh, I can't because I just don't feel great today, of course everyone would understand and they would get it. But there's just something that you feel like is embarrassing because you're like, oh again, like I feel shit again. Yeah,
I have to cancel again, and it's embarrassing. And I, you know, I when all this happened, not not long after the MS diagnosis, I was at Channel nine nine dot com do AU. I'd been there for a long time and but it was you know, I anyway, that's a whole other story, but I ended up leaving work.
They were amazing and so so super supportive and incredible, but I just felt like I needed to just switch off, you know, going into hospital so much and never knowing when and for how long, and it was just stressful and I just decided to concentrate on me and my little family.
So I did that.
But I've just started now getting into like a little bit of work again, just things that I can do from home that.
Are like, you know, stressful.
I'm not managing a big team, you know, things that I can I can do easily. But one of my first thoughts when I have said yes to doing certain things is like, oh, I'm going to have like work, so I can say to people I can't do something.
Because I'm working out.
Yes, so I have an excuse for things, like a normal excuse.
Yeah, because it's real, it's not a lie.
I can just lie. You'll never know. And because I'll just be doing it at home.
Yeah, because I'm actually doing it as opposed to yeah, I know what you mean.
But it's also like messed up.
It's so messed up, and no one like Sam will often hear me say that to people and you'll be like, why do you do that? And I'm like, you won't get it, but I am embarrassed. He's like, what if you got to be embarrassed about Like it's very hard to understand why you are embarrassed about it. And the reason we didn't want to do this is because we don't want to be known as the sick girls, because it's not just what we are there's this, but that
we're also so many other things as well. And then I was also nervous to do it because I'm like, I don't want work to not come my way. I don't want people to not consider me for things if they know that I have that my health is like because I put on a big act a lot of the time, like the you have to.
I have to because also.
People don't even care, like no one gives a fuck really, because I know why I don't. When somebody's like, oh, I've got a fucking flu or something, I'm like, oh, that's a shame, like and then you go on and you give zero shits about it, you know what I mean, Like, yeah, yeah, there's only so much people actually, and of course they feel sorry for you and stuff, which sometimes I hate as well. Sometimes I'm like, no, I want you to
get it. I want you to get my reality. And then other times I'm like, oh, I don't want to talk about it. I don't want you to feel sorry for me.
Or they say I don't know if this happens with you, but they'll say, oh, I know someone, and you know, my Auntie's sister's friend has has MS and she's really great and you know she lives like my yeah, great, that's wonderful for her. But no one situation with MS is ever the same.
You know.
I interviewed the amazing Tim ferguson The Comedian last week, and he has MS and he's in a wheelchair, so he's where he is is so different from where I'm at and so different from where someone else with me.
Yeah. So and also like say that, I'm.
Like, fuck, yeah.
It's like when you're in America and somebody's like, oh, do you I know so and so in Australia do you know that person?
It's like but also it's just what I.
Find hard is and people just mean well, but it's so unhelpful, people giving you suggestions of things to try, like if you tried herbs, Like no, what the.
Fuck do you think?
I'm thirty years into this, Like I started getting migraines when I went through puberty and they have progressively got worse over the years, and at the moment they're so unbelievably bad. I cannot tell you the amount of money I've spent on treatments, like it would be literally over one hundred thousand dollars, like probably up towards two over this time span, which is just so ludicrous.
But it's like I've tried every.
It's another thing you feel guilty about, right, Like you feel guilty because no one you know, Sam, your partner, Sam doesn't you know, doesn't have any.
Health issues, and so you're the one to spend it just gobbling money.
Yeah, or I feel so guilty, yeah, yeah, Oh, there's so much guilt involved in it. And I also I am so conscious of the fact that I do am able to do things like the other week, I was in hospital for a week and the medication they've put me on is over five hundred bucks a month for this new medication, and I'm like, well, like, how do people
do that? I'm so fortunate with our situation that it's like okay, and then you know, a fifteen hundred dollar bill to get out of hospital because of these different tests and stuff, and I'm like, that's just so much money and that's not even a fraction of what it costs for.
Me to do what I need to do to do.
But other people have to wait on majority of people have to wait for the public system, which can take fuck knows how long, which is also another thing where you're like, oh my god, like thank god, I'm so lucky, but you also feel guilty as.
Well about that. Yeah, yeah, yeah.
That's a joke, isn't it.
They're so they're so Yeah, the guilty is hard. Don't even like get me started on the guilt I feel with my kids.
Oh my god, yeah, that is that's the worst. I think it's.
I think my kids are only ever gonna remember me being in bed. Like I got Arlo to do a play therapy and I could hear him in there with her and he's like, you know, what do you like to do with Mark? She was like what do you like to do with mum? And he said she's always in bed and do anything.
She's always in bed. And I'm like, fuck's right, like I am, oh my god. It was awful.
And then but you know, they can cuddle you in bed, you can read and they can read to you.
You know, there are things you can do even though you're in bed.
But it's just ship Like I so vividly remember being at the beach once and seeing a mom have her kid on a boogie board on the just in the shallow bit so on the sand and pulling the string that it's on and running really fast with that. What see I looked at her doing that, won't see, but.
Then you know I can't Well you're not that, you really, but then I can't move or breathe for the next few days.
But I'll I took my girls to Fiji on.
My own as they were like, Mom, we want to go on the jet ski and we want to do the water barke.
And because I'm so head you.
Are so headstrong it's ridiculous.
So I'm like, Okay, I'll take you on that jet ski. I can do that. You just watch. I can do that fucking hell. So I did it all, you know, and then you spend the next however.
I'm paying for it.
Yeah.
It's funny, isn't it.
Yeah, Because I see people just do things and I'm like, oh my god, I want to do that. I want to be able to go for a jog or I want to do that, and it's like I have to wait every morning to see how I am to go Today you can do that or no, today you can't do that. Like even to do today, I was like, am I going to cancel because I have a yucky headache that then I get anxious is going to go
into a full migraine. But I'm like no, just just it's almost like the different degrees you know, where you can push yourself, but sometimes you just push it too far.
What you've just said there resonates with me too, like the anxiety of, like I have a lot of stomach issues. So often with neurological disorders and disabilities that involve the brain, what can happen just in a nutshell is like the brain slows down messages to the gut, which can result in a lot of gut issues and pain. And yes that too, yes conservation all of wonderful, beautiful things, And so that happens. I have that a lot, and when it flares up, I don't know if it's going to
last for a day or for two weeks. And so when it happens, the anxiety of when, how when is this going to go? How long is this going to go on? For that's probably when I get like in my darkest place, because you still even though you have this stomach pain and your nauseous, and I think a lot of people listening will probably relate to that too. You don't have to have a you know, a disease or a disability to have stomach pain. A lot of women have gut stomach issues and it can be debilitating.
It is so hard, but you still have to go out and do pick up and drop off and do all life with this, like just feeling so sick and it is so hard.
Like that energy takes then to go out and just because you don't, you're right, like, and we've got to do more. I think we've got We've got so much to cover that we should come back and do another one because I'm just thinking about you know, avoiding people, the acting that goes on, Like there's so much that comes with this. I reckon we do, We'll do another one. We're going to do another one. There's going to be parts to this and we really want to hear from
you as well. So yeah, go to show and tell online is we're on Instagram and send us through if you've got if you're going through anything, you've got any questions, because we get it.
And it doesn't have to be yeah, what we're going through, it can be anything, totally. I think anyone with a chronic illness we're all like on the same like, on the same spectrum, on the same.
Page, and it's wild how many of us are out there walking around and you would never know. And that's why we wanted to do this, is because if you saw Brooke and Eye in the street, you would never know what our reality is. Because we can put on an act and we can get to work and we can do the things sometimes that need to be done. But then there's also times we really can't, but the outside world doesn't see that, and that's again when it becomes really lonely and it's isolating and it's shit.
Yeah, that's a big one.
I would love to talk more about that too, because I have you know, I can have like a month or two even where I feel amazing and great and normal. So you go out and you do all of the things and live your best life, and then it comes crashing down again, and it's hard for people who are in your life, I think, to understand that, like, oh, but you're great, and you I'm like, yeah.
I saw a Sam will often get oh I saw him on to you the other day.
She looked really good.
And every time he hears that, he wants to punch somebody because he's like, yeah, yeah, because you've seen her when she's out.
Of fucking bed. So it's like, all right, well, we're going to leave.
It there, and there's so much more to uncover that we will do another one. We're not sure when, but we will get you and we will do another chat and we'll just wait to hear from you if you want to hear more, or if stuff that so many of you have switched, but if you're there listening now, you get it, if you've hung in this long, so you're people, and.
Yeah, so hit us up. We'd love to hear from you, and we will chat to you.
Right by.
Thanks for having me