It's Icronic time with Brooken Monty. Thanks for joining us on our Chronic ill podcast.
Don't change your day, Joel, will you? Maybe?
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.
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.
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.
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 chronic illness.
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.
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, 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 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.
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?
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 a lot.
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, 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.
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 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 your whole body, like if you had a blood cancer or something like that, then you can't use the cold cap?
Why why you use the cold cap? Like it does actually do.
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 a no.
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.
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 it will be quite a long process, I imagine.
Okay, so what's next steps?
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.
Do you just kind of want to get it started now or it's yeah, it's.
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 thinking about it all the time.
Of course.
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.
It sooner as soon as you can.
Yeah, So I feel like, yeah, I've kind of come around to accepting that it might need to be soon. Wow.
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.
But fuck, and also you you've had a huge week.
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 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.
Yeah, it almost feels like you've given up.
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?
He is just mabe put up with it, yeah, putting up.
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 alone last year where I was in bed literally ninety percent of the time. So it's been quite amazing.
But so I could I just ask have you had one of those nerve oblations before?
Never?
Okay, so this was the first one that you had six months ago?
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 went in and it's in a hospital setting, but it's all mind body connection.
Okay, So can you just set it? Can you paint the picture for me? Like, what's the room? Like?
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 a hospital, but it's laid out like a hospital.
Okay.
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 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 day about each patient, and so.
So what do they do in a session if you don't So it.
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 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 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 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.
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.
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. 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.
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.
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 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.
Yeah, can you do like a little video or something and like show us how you tense up and release.
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 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, and I'm like, this is what it feels like to be normal, Like I just.
Don't go getting off, don't go getting all normal on me.
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 get back now.
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.
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
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.
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 meditative state by like going, you know, through a swing course.
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, 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 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.
Yeah, I'm really proud of you. You went and you gave it a good shot.
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.
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 about me, and he sort of asks, oh, you know, are you feeling better today?
Mom?
Or you do you need to lie down? Do you need a rest today?
Mom?
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 I just wanted to know how you guys deal with that side of.
Things with your own children.
By the way, love you guys.
Thank spapeh.
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 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, 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 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. 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 really good for her. And I guess in some way gives her some control as.
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.
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 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.
Grain of things, you know, totally, yeah.
You know, but now she will kind of do those things without even asking because she knows. I will have.
Very unique though, because my parents don't do that like they have. This is how I am.
I wonder if it's different between boys and girls.
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.
It's kind of like it's like the norm almost, Yeah.
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.
It's to me, right, like this is strange.
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.
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.
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 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
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.
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, 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 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.
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 I remember so vividly one night because I slept with Mum until I was like thirteen. There's another fucking sign of anxiety.
But I sp I actually kind of love that.
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 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.
Called hung up, that's so freaking.
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,
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.
There, Yes, made you feel better.
Yeah, I'll never forget that, and never forget that feeling of being so feeling so unsafe in my own home.
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.
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.
Look. But still at the end of the day, any robber came to my house, I would have sort that person out, Okay.
Lest I to migrain Yeah, I would freeze under my doner and leave.
The kids to probably would.
Anyway, thank you Alex for your message.
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 is in a way that kids can understand and not feel scared. So perhaps you could find a book that could explain it.
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?
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, 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.
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?
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?
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.
God, I didn't know this. I thought that looks the most real though.
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.
Okay, Oh that's that's interesting. I didn't realize that.
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.
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 comfortable like just rocking a shaved head. Maybe I'll change my mind, but.
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.
Yeah. Oh, for fuck's sake, on that fun note.
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. Guards By