H chronic time. It's a chronic time. Are you sick?
When sick? That was not good, mate, that was not good.
Not a good start to the prodigy. It's Monty here and Brook with you. Our podcast is all about chronic health because if you don't laugh, you'll cry. I have chronic migraines, chronic fatigue, pots, mcs, you name it. I fucking lot it.
Haha. I'm just gonna go with MS. Now you've stripped back.
Yeah, I'm back.
Well, I just kind of it just trumps everything else.
So oh no, MS wins, MS wins.
All right, you totally win.
Hey, before we get into some of the stuff you guys have sent in, which we absolutely love, I heard Brook you got a new dog.
Yes, I've got a dog.
And what the fuck? I can't believe you surrendered.
I'm not really a dog person.
I've never had a dog before ever, and my husband and my two daughters have been badgering me for years to get a dog, and I finally caved. But my husband came to me with this idea, and this is what turned me around. So he said, there's this place you can go. A couple of our friends have used it, a place you can take your dog. It's in the Hunter Valley here in New South Wales, and you send that. Once the dog is born, you send them there straight away for you can do four weeks or six weeks,
and we did six weeks. Once the dog is born, the breeder sends them to this farm training camp kind of thing and they train the dog for you, so you don't have to go through those hard early days where you know, people say that they're like a baby and they wake up in the night and all that kind of stuff. So we did that, and so we got her names the girls have called her. So we did that and she arrived just a few days ago, about three or four days ago, and she is complete
heaven like, she is so well trained it's unbelievable. So from the day she got here, like she's so say, four nights every night you put her to sleep in the laundry with like a baby gate thing, and she will sleep there from like nine o'clock until six o'clock when we get up, and like, wow, not a peep out of her, not a single peep. She knows like not to go on the couch, She doesn't go.
Up on my stairs. It's amazing. Oh my god, I hate a barker. But if you've got chronic health issues, that's almost the way you've got to do it. Because if I had a dog and I was waking up to it all through the night, I don't want it pissing on the floor. There's no way. The boys are desperate for a dog, and I'm like, no chance, Like, there's no chance. I also don't like everyone's like, you like my dog. I'm like, I'm not gonna like your dog.
I don't want to. There's not one part of me that wants to pat a dog, like, not one part.
Well, she's really grown on me.
I thought I would be like that too, but already she's really grown on me. She does this cute thing where she like comes up to me, like sitting on the couch, and she knows she can't come on the couch, which is just like incredible, but she'll just like put her head like on my knee or something. And then she started doing this thing but only to me, where she'll put her pour up like she's holding my hat.
Oh that's pretty cute.
It's so cute.
I still don't want to pour in my hand, but anyway, something you've got to watch out for. Is I heard on the radio yesterday that I forget what dog food brand it is, but they're trialing like this fit bit kind of thing for dogs because they're like dogs will eat all the time, and they manipulate their owners for their owners to think they're hungry, so they're like, fuck, i'll feed you again. Fifty percent of dogs are obese
in Australia. So they're doing this collar where through it you keep track of the calories it's eaten and the exercise it's done. So then you stop overfeeding your dog.
That's a bit fat, don't you think? Yeah, totally.
It's like it's an apple watch basically for a dog. It grows around it.
Yeah, that's ridiculous. I mean we feed our dog twice a day. I mean, I have no idea how often you're supposed to feed your dog. But this is all come from this training place where they're like, you feed it twice a day.
This is what you give her. So that's all we're doing.
Just follow what they're saying that. Yeah, but it can almost be like a therapy dog for you. A lot of people have therapy dogs. Yeah, there you go. You can have the therapy dog. But when I think of like kind of therapy, beautiful things like dogs are really regulating for the system, so that will be beautiful for you. But my mom, this is going to horses now, so
a little different to dogs. But my mum and I, obviously before she passed a couple of years beforehand, went to Gwing Ghana the health retreat, which was the most beautiful thing. And I'm so thrilled Mom and I did it together because it's so special, like it's so fan of one of those so fancy, one of those things that you can't do many times. As soon as we got to the horses, it came up and it nuzzled into Mum's lung where her cancer was.
Oh my god, that's amazing.
It was phenomenon. It was like very It wasn't just a oh that's quite a coincidence. It was like, oh my god, it's another lady there in a different group had breast cancer and it did the same thing to her. But one of the things we also did was you stood in the kind of rainy thing and she'd let go of the lead, so the horse was just standing near you and you'd have to use your energy to get the horse to run around you. So you would like lower your energy, not say anything. It was all
about energy. Lower your energy and the horse would start to trot. I like, bring up your energy and it would go faster. Anyway, everyone does it beautifully. Of course I can't get my fucking horse to move because of course I'm dead inside. It just doesn't move. And she's like, oh my gosh, you've got so many issues. I'm like, yeah, no shit, I'm like, what if you're here doing horse therapy, is the only one that doesn't move? Mine was the only one that didn't move, and I was getting embarrassed.
I was like, just move, horsey, please smooth. And the more I would stress, the more bloody stub and this horse would get like you couldn't hide, you know, I know. Anyway, how have you been lately? How is everything going with you?
Ye're good.
It's so funny because Ye're good, you know, is always my go to answer. I laugh about that because often my family and friends will listen to the podcast and they'll say.
Oh my god, I didn't know this or this or why didn't you tell us this?
And it's really made me realize that I don't really tell anyone much at all, and on this podcast, because I'm talking to you, Monty and to everyone else, and assuming that the people that are connecting with us on the podcast are also chronically ill, I feel like it's a different space, so I can't talk really freely and honestly. But then I almost forget that other listed.
Yeah, well, this is a good thing because you don't have to repeat yourself. We can just pass this on and go this is how I am at the moment.
Yeah, yeah, that's right.
But yea, no, look, I'm really like one of the big things I'm struggling with at the moment is fatigue.
Yeah, it's just it's really hard. It's really Yeah, it's challenging.
It's really challenging and really is affecting the day to day everything.
Yeah, what it does. And I reckon, like we touched on a couple of podcasts ago that how we think most people who have a chronic illness would have chronic fatigue because it's so unbelievably taxing. But when my headaches are okay, my fatigue just smashes me. I think when my migraines are so bad, I'm in bed resting anyway, it's not the forefront. It's yeah, the focus is the migraines, where when they're gone, the fatigue is so unbelievably bad.
Like I told you last night, i Otis, my four year old, woke up at like two and I had to go on laying with him. He was wide awake, so that was an hour and a half. It took me to get back and then Sam woke me up at seven, which for most people is a really reasonable time and a time that I would love to I'd love to get up even earlier. But my whole day now I'm exhausted, And then my anxiety gets worse because I'm like, oh god, I've got to do this with the kids. When am I going to get to rest
and podcasting? Like I didn't want to cancel on you, But then I'm like, I'm not going to be in fine form, Like the fatigue is fuck.
And it really is.
I think also it's really hard for people that don't, you know, those people that don't have any illness, like chronic illness, to understand the fatigue, Like it's not a normal tiredness and it doesn't matter how much rest and how much sleep you get you don't ever feel rested. You know, like an never person to get ten hours sleep and feel like they'd had a great sleep and feel rested the next day.
But that doesn't happen with us. Yeah, that's not just not how it works.
No, so I'm with you. But we got a voice memo from one of you around chronic.
Yes, oh this is fitting.
Hey, ladies, love the potty. I have a kidney disease and as a result of this, I also now have chronic fatigue. I know you both have this as well, so I'm looking for any tips that you might have to keep it at bay. How do you deal with this in social ways? I just don't feel like my friends and often family really understand. Often when I say I'm tired or I can't do something because I'm too tired,
they say, yeah, me too. How do you help get your friends and family to understand that it's not the same as just being tired.
Yeah, we'll pass on this, Thank you very much, the starters.
Ye give it this episode.
My patience which is awful because people do feel tired, and it's yucky when you feel tired. I get that, But my patience for when people tell me they're tired. It is not there.
It's almost fun to do.
Do you say, I just kind of say nothing. I just got like because it's like I get it, and it's a normal thing that people feel tired. I just when they say it, have no compassion for it, because I'm like, that's tired, Like you have no idea. When I'm tired. It's not tired. It's complete exhaustion. It's a whole other ball game.
I try and explain it, like it is like trying to walk through quicksand like your body is so heavy and it feels like if you can think of a time when you've ever had the flu, like it feels like the heaviness of when your body has a flu, Like you're walking through Quicksand I think that's how I've been trying to describe it. But it's it is really hard for people to get their head around. And I find it hard when my darling husband would say he's tired.
You know, he might have been you know, he's probably you know, been away for work for a few days or something, and it'll come back and say, oh, I'm really tired, And I get it. You know, he is tired. And that's absolutely fair and justified. But you know, he's the one person I can say, oh my god, are you kidding me? Like, I don't want to hear about you being tired when you're staying in a hotel for.
A few days.
True. Yeah, I completely get it.
And now it's like, you know, he'll often say to me, oh God, I'm so tired and say, oh my god, I'm sorry, Like I know it's you know, it's nothing compared to what you're going through.
And I don't want him to feel like that either.
So I get that it can be hard for other people to understand because if you haven't been through it, how would you know how hard and debilitating it.
That's the thing with any of this. Unless you're actually going through it, you can't get it. But the fatigue, for me, I looked up and I was like, oh, you know, just researching a little bit about chronic fatigue, and it was saying that other symptoms of chronic fatigue syndrome unrefreshing sleep, which you said, like no amount of sleep that you get the brain fog that comes with that, eat the brain fog. Yeah, it's one of the most frustrating things for me because I can't find words. I
make mistakes all the time. Unless I write things down, I forget it. I hate it.
Yeah, like I hate it.
I've interviewed so many people with I've been doing a series for the Cinney Morning Herald and the Age about chronic illness and people who have chronic illness, and one of the big recurring themes is always the chronic fatigue. I think it's like ninety percent of people with the chronic illness also have chronic fatigue. And what they often say is to your point about you know, slurred speech
and not finding the right words. That often, like by the afternoon, they're just like they can't function, they can't work, they can't like they often just can't even talk by the end of the day.
That's how I feel. But then you've got a family and you've got things going on, you kind of have no choice, so then you push it through, which then makes it worse.
Yeah, and sometimes, like you know, I'll even say to my girls at like the end of the day, I actually just can't even like talk, like I just don't even have that energy to like talk. I'm sorry, I'm so sorry, But that's the honest truth and even like I don't know if you find this, but like just to kind of, I guess, like paint a picture of what it can be like, Like I often, you know, I used to always like have a shower every morning,
and I love a bath in the evening. But I like find having a shower in the morning so exhausting, like so exhausting. If I have a shower, I'll need to go and like lay down for a bit because I am exhausted and like and little things like there are some days when, like you know, I'm reaching up to get a mug out of the cupboard and I'm like out of breath, like exhausted just from that movement. Like that's how severe it can totally.
Yeah, yeah, they're also what comes along with that is you know, explaining all of that is it's also embarrassing. Again, we keep coming back to this embarrassing thing, but it's I often feel like our family's quite full on and Sam does so much that I feel like I also don't have the freedom to go. I'm so exhausted right now, Like blinking is an effort for me, Like you know, when your eyes are so heavy, it feels like you've got cement on them, or yeah, oh, Sam will get
home and go what did you do today? And I feel like I'm scrambling for things to say because sometimes I've spent majority of the day in bed, or I've gone down to the supermarket and that's all I have capacity for to do. Interestingly, another one of these things is light sensitivity, which I absolutely have huge light sensitivity. Muscle and joint pain and headache. Do you get joint pain?
Yeah, I have a lot of It's hard to tell her this joint pain. Yeah. I blocks in like my face, my head, my leg my hip for nerve.
Pain yeah, yes, so you don't. And then the chronic fatigue probably exacerbates it. Duma pain, bloating and nausea, that's very you. Yeah, yeah, sinus problem, swollen glands, tend to lymph nodes, sore throat. Yeah. So there's so much else that comes with it. And of course it's mainly women, most common amongst women twenty to fifty years old.
Of course, it makes me think actually on this topic for you, because people think when you say you've got coin fatigue, you feel a bit like and I also feel a bit embarrassed to say that because I think people feel like, oh, you're just really tired and you have that. But then on the other side of the coin, you also have chronic migraine, which a lot of people probably also assume is just like a really bad headache, you know, so you kind of have a double whammy where it's hard.
To keep playing.
People can relate totally, and that's why I'm constantly no, and you can't unless you've got it, But I constantly am like, I wish it was a different part of my body, Like I really wish that. I don't know, people seem to unders like for me and have back pain.
So somebody who's got really bad back pain who can barely move, I'll be like, fuck, that's hectic because I don't experience that, and everyone's familiar with back pain, or it's just because it's so invisible, which most of us listening have these invisible illnesses, and also something that's slightly linked to how people experience it that they feel like I feel like sometimes people and I know that Sam doesn't, but sometimes I feel like you thinks I'm whacking it on a bit.
Yeah, right, okay, do you know what I mean? Oh God, he would never think that people.
And again that's my embarrassment or I think people might think, oh, she uses as an excuse, or you know, like when I've said I make mistakes sometimes with work staff. My brain foggy is so bad. It's really hard for me to concentrate on things. And like I'll go down the street and I'll even have a list of things to do, but I'll still forget three things. I'll miss three things that are on that list. Yeah, because my brain's it's not.
With it not there.
It's funny because Monty, I like, you know, we've known each other for a long time, like almost twenty years i'd say, and well before my MS diagnosis, and we used to holiday together a lot, and you would often take naps on holiday, like during the day, and I just always knew, like that was just who you were, that was you know, like you had to do that but could not relate to it at all, but knew that like that was a really serious, you know, health issue for you and that you needed to take time
throughout the day and certain things would exhaust you, but yet couldn't relate. And it is just the weirdest thing for me now to have like the ms come on and then this like just like at the same time, it's just such a bizarre thing, but now I'm.
Like, I get it, I get it.
It does make me think and like appreciate the fact that if you haven't experienced it, it would be so hard to.
Totally Yeah, it's the same with you as you recently had about a pretty bad anxiety which was the result of some medication that you were having from hospital. So you've got a glimpse of what it's like. Yes, where now you're in it full time with your chronic fatigue, but you can't there's no way that you can get it. I just am shocked that people don't feel the way I feel the time, you know, when it becomes your
normal and I'm like, aren't you all fucking exhausted? And when people say they never even get a headache, I'm like, what, it's so foreign to me. I can't believe that bodies work properly.
I know, it's so unfair.
It's also like, you know what, I read this thing and it was like to understand chronic Like for a normal person to understand how chronic fatigue feels, they would have to stay awake.
So no sleep zero sleep for three.
Whole days and nights, three days and three nights, and then they would understand how you feel, like every single day effort.
That's real tasting.
Yeah, and it does sometimes it does feel that Like sometimes it reminds me of when I used to go out all night and come home when the sun was coming out, like exhaustion. Like that's how it feels day to day.
Yeah, those days are gone.
Like I'm in bed, like as you know, because often we'll be messaging stuff and I'll be like, I'm in bed now, Like I'll be in bed by seven thirty, like yeah, and I just and even that is a real stretch, like I'm waiting for my husband to get home so i can like go to bed.
Go to bed.
Yeah.
Yeah.
Like so it's like if somebody I'm like with friends, I'm like, lunches are better for me dinner, because I did a six thirty dinner the other week and I was like, this is a bit late, Like I'm conscious of well, I really need to be home by eight. I got home at nine, and of course the next day I was cool.
Yeah, and that's not true.
Yeah, And that's quite challenging to get your head around too, Like I think after three years, I'm only just kind of understanding my limits now, like knowing that if I have, you know, a few things on, you know, have a big day and have lots on that, I know that I'll pay for that.
It'll take me like a few days to recover.
And I'm learning what I can do and then what the repercussions will be.
But it's not a while to get there.
It does, but it's also like you don't want to miss out, Like I hadn't been out for a while, and I'm like, I want to go out and chat with my girlfriends. But then there is always a little bit of a payoff.
I was actually at my I go to this rehab clinic, and the lady there that owns it, who was just awesome, her name's Katrina, and my neuralogist had said, I want you to you know, I do physio and things like that, but she said, I also want you to see an OT for the fatigue. I thought, oh, yeah, okay, that's interesting. I will I mean, I see an OT for other things, but like a specific ote for the fatigue.
And then when I.
Told her that, she said, no, you don't need an OT for the fatigue. What I would say to someone like you with your personality is you would be better off with a psychologist.
And I was like, what I don't understand, And she said, big, the.
OT will try and like look for ways during the day that they can help you find those little pockets of time and get you some time back and get you some rest back in your day.
But she said, for.
You, it's not about that, like you know, you know where you can get your rest, but you don't do it.
And so she said for your.
Personality, which is probably like you took the type a kind of go driven kind of personality, you find it hard to take those times to rest.
So she said, it's.
About you need to talk to a psychologist about giving you some strategies for how you can kind of change your thinking and allow yourself to slow down and not think that you always have to be doing something.
Yeah, so I thought.
That that resting.
So it's really good.
Sometimes I'll lay down, I'll be like, it's just wasting time. I could be doing things where it's like, well, no, that's not time wasting, that's healing your body in some way. Yeah, But pain rehabs interesting. We should talk about that another time, because I being advised that I need to go and do pain and rehab for two weeks. But it's just
finding that time. But my neurologist is like, you have to do that because your brain gets rewired when you've been so chronically ill that you need to Yeah, because you just start to think in a certain way, you perceive pain a certain way, so you've got to try and retrain your brain.
Yeah, I've heard about this, I guess not dissimilar to we should talk about this another time.
But hypnotherapy.
Yeah, you've been trying to get me to do that.
Yeah, well I don't actually know if it worked, but but yeah, I think that's really interesting. There's a toadly a lot of doctors are suggesting that these days.
So yeah, I know, see, there's so many things I want to try like that as well. But then I get appointment fatigue and I'm like, I just can't be fun.
I know something else to commit to.
Yeah, and just filling out those forms, writing out your history, repeating it all. I'm like, I just can't be bothered.
I know I feel you, I feel you. I hope we helped Brianna and gave you some good advice.
I don't know if we did. We just kind of played for we just complained.
I think sometimes it's just knowing other people people are dealing with it.
Yeah, and you know what, I reckon, Brianna, like, honestly, not everyone will understand. And to those people who cares, like the people, just surround yourself with the people that do, the people that care, the people that support you, and also just give everyone else this episode of us I reckon.
I've just found that fascinating about for somebody to truly understand chronic fatigue, they would have to stay awake for three days days, yes, far out.
Yeah.
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