WEBVTT - Kids always know what's really going on! 0:00:06.440 --> 0:00:11.280 It's Icronic time with Brooken Monty. Thanks for joining us 0:00:11.360 --> 0:00:13.280 on our Chronic ill podcast. 0:00:16.280 --> 0:00:19.000 Don't change your day, Joel, will you? Maybe? 0:00:19.200 --> 0:00:22.759 I certainly won't. It is it's Brooken Monty and we 0:00:22.880 --> 0:00:25.919 both have a plethora of chronic illnesses. That's why we 0:00:26.000 --> 0:00:28.159 decided to do icronic for you. If you've got a 0:00:28.360 --> 0:00:32.200 chronic health issue or you love somebody who does, yes. 0:00:33.040 --> 0:00:36.000 We hope it makes you feel like you've got a 0:00:36.400 --> 0:00:40.040 got a buddy in us, someone to yes, to listen 0:00:40.400 --> 0:00:43.240 and understand and feel where you're at. 0:00:43.680 --> 0:00:46.760 Yeah, totally, because we often chat about how isolating and 0:00:46.760 --> 0:00:49.559 lonely it can be having a chronic health issue. Like 0:00:49.600 --> 0:00:51.680 even though Brook and I both you know, Brook's got 0:00:51.680 --> 0:00:54.480 a mess, I've got chronic migraines, We've both got chronic fatigue. 0:00:55.120 --> 0:00:59.400 We connect over it, but also our own I hate 0:00:59.400 --> 0:01:02.639 the words very different as well, like everyone's just so 0:01:02.680 --> 0:01:04.880 fucking different. Yeah, it's hard about. 0:01:04.600 --> 0:01:07.120 It, that's true. But then, but then there are so 0:01:07.240 --> 0:01:12.360 many similar themes, you know, like because you know, whether 0:01:12.640 --> 0:01:15.080 you know, whether it's like guilt with your family, or 0:01:15.520 --> 0:01:17.679 it's like a body image thing, or you're you know, 0:01:17.800 --> 0:01:21.960 feeling like financially you're a strain. You know, all these 0:01:22.040 --> 0:01:25.480 kind of things are pretty universal, I think as to 0:01:25.560 --> 0:01:26.759 chronic illness. 0:01:26.800 --> 0:01:32.360 Totally, of course they are what joys. Anyway, our last episode, 0:01:32.400 --> 0:01:35.000 we were talking about Brookie, let's get an update from 0:01:35.000 --> 0:01:39.560 both of us, because you had spoken to your neurologist 0:01:39.760 --> 0:01:44.920 and she said, you're a candidate for stem cell transplant. 0:01:45.240 --> 0:01:46.120 What's the update. 0:01:46.720 --> 0:01:52.639 Yeah, so I have had an appointment with the person 0:01:52.720 --> 0:01:56.040 that heads up the stem cell transplants for MS in 0:01:56.080 --> 0:02:00.560 Australia and yeah, so she is kind of run through 0:02:00.600 --> 0:02:04.520 how it would work and has said that yes, I'm eligible, 0:02:04.960 --> 0:02:08.880 which is a weird thing because when she you know, 0:02:08.919 --> 0:02:10.840 when she told me, yes, you're eligible to do this, 0:02:11.800 --> 0:02:17.280 I was like, oh, that's amazing, Like I'm so lucky, 0:02:17.400 --> 0:02:21.520 because you know, hundreds and thousands of people go overseas 0:02:21.560 --> 0:02:24.519 to have this procedure done because they don't fit the criteria. 0:02:24.600 --> 0:02:27.680 So on one hand, I'm like, I'm so lucky. But 0:02:27.680 --> 0:02:29.240 then on the other hand, I'm like, I don't want 0:02:29.240 --> 0:02:32.679 to do this, Like I really don't want to do this. Yeah, 0:02:32.720 --> 0:02:36.240 but yeah, you know, like I obviously no, long term 0:02:36.240 --> 0:02:39.639 it's the best thing to do. So I'm meeting with 0:02:39.720 --> 0:02:43.519 her again next week and then we'll come up with 0:02:43.520 --> 0:02:44.400 with more of a plan. 0:02:45.240 --> 0:02:48.240 Do you think that one of And you know, I 0:02:48.280 --> 0:02:50.280 was telling Sam, I'm like, Brooks, a candidate for this. 0:02:50.480 --> 0:02:53.680 Three medications had to have not worked for you, and 0:02:53.720 --> 0:02:56.959 so that's how you were eligible for this. But yeah, 0:02:57.120 --> 0:03:00.519 like you said, your benchmark move, do you know what 0:03:00.560 --> 0:03:02.680 I mean? Like, at some point this was your worst 0:03:02.720 --> 0:03:06.440 case scenario and now it's your best Like what the fuck? 0:03:06.880 --> 0:03:09.880 Yep? Yep. And there was a point over the last 0:03:09.880 --> 0:03:12.040 couple of weeks where I thought that maybe I wasn't 0:03:12.080 --> 0:03:14.680 going to be eligible, and then I found out no, 0:03:15.160 --> 0:03:17.560 you know that I was, And I was like, oh 0:03:17.639 --> 0:03:19.480 my god, thank you know a few thank god. And 0:03:19.520 --> 0:03:21.720 I'm like so excited when I, you know, find out 0:03:21.720 --> 0:03:24.120 that yes I'm eligible, But like what am I excited for? 0:03:24.360 --> 0:03:26.640 Like to get chemo and lose my hair and be 0:03:26.720 --> 0:03:29.320 really sick for a couple of years. Like sound like 0:03:29.360 --> 0:03:29.880 a lot. 0:03:29.680 --> 0:03:32.960 Of fun, I know, But there's still an option. I think, well, 0:03:33.120 --> 0:03:36.080 there's options available, there's still hope involved. And when we 0:03:36.120 --> 0:03:38.800 don't have hope, when you're chronically ill, that's when it's 0:03:39.440 --> 0:03:42.960 really hideous. But yeah, like I was saying, to Sam 0:03:43.440 --> 0:03:46.640 and I was telling him you were eligible. I said, 0:03:47.240 --> 0:03:50.720 one of the things that is the most confronting about it, 0:03:50.760 --> 0:03:52.600 even though it's going to be such a full on procedure, 0:03:52.640 --> 0:03:57.640 is the losing the hair for you, which I totally get, Like, 0:03:57.680 --> 0:04:02.400 there's something so symbolic about our hair, and I know, 0:04:02.480 --> 0:04:06.520 out of all the things, it is the least of 0:04:06.560 --> 0:04:09.600 what actually matters, but it's almost the worst. 0:04:10.280 --> 0:04:15.480 Yeah, it's wow. It's almost a little embarrassing to admit 0:04:15.600 --> 0:04:22.039 that's that kind of plays into your reasoning, but it does, like, 0:04:22.240 --> 0:04:24.560 of course, you know, of course, you do what you 0:04:24.560 --> 0:04:26.719 have to do, so it's not an option to keep 0:04:26.720 --> 0:04:29.640 your hair. Some of you guys have reached out and said, oh, 0:04:29.720 --> 0:04:31.880 you know, you can use the cold cap to save 0:04:31.920 --> 0:04:35.239 your hair. Unfortunately, for this kind of transplant, you can't 0:04:35.360 --> 0:04:37.839 use the cold cap, which I thought was really interesting. 0:04:37.839 --> 0:04:40.159 I've found out that you can only use that cold 0:04:40.200 --> 0:04:43.479 cap to save your hair if you're doing chemo that's 0:04:43.560 --> 0:04:47.520 like in a specific place. So if it's like breast cancer, 0:04:47.560 --> 0:04:50.880 for example, and they're targeting your breast, then you can 0:04:50.960 --> 0:04:53.919 use the cold cap. But if it's if they're targeting 0:04:53.960 --> 0:04:56.039 your whole body, like if you had a blood cancer 0:04:56.120 --> 0:04:58.719 or something like that, then you can't use the cold cap? 0:04:59.160 --> 0:05:01.760 Why why you use the cold cap? Like it does 0:05:01.960 --> 0:05:02.560 actually do. 0:05:03.000 --> 0:05:06.240 It's something like it interfares like I'm not getting with 0:05:06.400 --> 0:05:11.840 technically right, but it's interferes somehow with your brain. And yeah, 0:05:11.839 --> 0:05:15.080 and because of that, you can't you can't use it. 0:05:15.200 --> 0:05:20.120 But if you didn't need to access your brain, then 0:05:20.160 --> 0:05:23.360 you could use it. Yeah, but anything whole body is 0:05:23.920 --> 0:05:24.159 a no. 0:05:25.120 --> 0:05:28.279 You what looking at this procedure that you're about to have, 0:05:28.320 --> 0:05:31.840 which you outlined really thoroughly in a previous episode, which 0:05:31.880 --> 0:05:35.360 is extremely huge, you also found out the process is 0:05:35.440 --> 0:05:38.320 quite a lot longer than you thought. 0:05:38.000 --> 0:05:41.320 Well in terms of the recovery, Yes, and it's different 0:05:41.440 --> 0:05:45.000 for everybody, so you kind of don't know where you'll fall, 0:05:45.640 --> 0:05:49.360 you know, with that. But I was told, you know, 0:05:49.640 --> 0:05:52.600 some people can recover within six months and other people 0:05:52.680 --> 0:05:57.120 it's like two years. So it just kind of depends 0:05:57.640 --> 0:06:01.159 how you respond, I guess. So, yeah, it's quite a 0:06:01.320 --> 0:06:03.400 it will be quite a long process, I imagine. 0:06:03.800 --> 0:06:05.400 Okay, so what's next steps? 0:06:05.960 --> 0:06:09.080 So I will meet with her again next week and 0:06:09.120 --> 0:06:12.520 then I imagine we'll have more of a plan in 0:06:12.600 --> 0:06:16.600 place in terms of when and all those kind of details. 0:06:16.839 --> 0:06:18.600 Do you just kind of want to get it started 0:06:18.640 --> 0:06:22.120 now or it's yeah, it's. 0:06:21.960 --> 0:06:24.760 Such a funny thing. Like when I first had the 0:06:24.760 --> 0:06:28.359 conversation with them, they had mentioned they we could do 0:06:28.400 --> 0:06:31.599 it as early as August, and my first reaction was 0:06:31.640 --> 0:06:34.440 oh my god, no way, like there's zero plans. That's 0:06:34.480 --> 0:06:38.920 way too soon. But then after I left, I was like, oh, 0:06:39.000 --> 0:06:42.359 maybe that is the best option, because I'm finding myself 0:06:42.400 --> 0:06:44.640 thinking about it all the time. 0:06:44.800 --> 0:06:45.320 Of course. 0:06:45.520 --> 0:06:48.080 Yeah, and you know, and you know, the way they 0:06:48.080 --> 0:06:49.960 put it is, you know it's better to do it 0:06:50.000 --> 0:06:52.200 sooner than later, and you know, in case you do 0:06:52.279 --> 0:06:54.360 relapse and then you end up with more disability, it's 0:06:54.360 --> 0:06:55.440 obviously better to do. 0:06:55.360 --> 0:06:57.120 It sooner as soon as you can. 0:06:57.480 --> 0:07:01.680 Yeah, So I feel like, yeah, I've kind of come 0:07:01.720 --> 0:07:07.320 around to accepting that it might need to be soon. Wow. 0:07:08.040 --> 0:07:09.920 All right, Well, I guess we'll check in again after 0:07:09.960 --> 0:07:12.600 your next appointment and you might have dates and a 0:07:12.600 --> 0:07:14.400 little more infra about it. 0:07:14.480 --> 0:07:19.360 But fuck, and also you you've had a huge week. 0:07:19.880 --> 0:07:23.320 Yeah, well the other week, Yeah, I went to pain 0:07:23.800 --> 0:07:28.240 rehab and this was like discussed quite a while ago 0:07:28.240 --> 0:07:30.400 with my neurologist and then I went and saw a 0:07:30.440 --> 0:07:33.520 pain specialist who did the nerve oblation where they like 0:07:33.600 --> 0:07:36.760 fry your nerves so you don't have pain signals to 0:07:36.840 --> 0:07:39.080 your head. And they were like, I think you should 0:07:39.080 --> 0:07:41.400 do pain rehab and I was like, to me, that 0:07:41.520 --> 0:07:44.400 is the last case, do you know what I mean? 0:07:44.400 --> 0:07:46.720 That's where there's nothing else you can do for yourself. 0:07:46.760 --> 0:07:49.280 You just go to learn to manage the pain. So 0:07:49.360 --> 0:07:51.480 I resisted it for so long because I'm like, no, 0:07:51.560 --> 0:07:52.880 I'm not there. I'm not there. 0:07:53.200 --> 0:07:55.000 Yeah, it almost feels like you've given up. 0:07:55.160 --> 0:07:57.360 That's exactly what it felt like to me. And it 0:07:57.400 --> 0:07:59.800 was depressing to me because I'm like, is there nothing 0:08:00.400 --> 0:08:02.800 that's going to work for me? Like? Is this where 0:08:02.800 --> 0:08:03.120 I'm at? 0:08:03.200 --> 0:08:06.320 He is just mabe put up with it, yeah, putting up. 0:08:06.240 --> 0:08:08.400 With it, but figuring out how to manage it better. 0:08:08.440 --> 0:08:11.160 So it really scared me and I was like, I 0:08:11.200 --> 0:08:13.920 really don't want to do this anyway. Last time I 0:08:13.960 --> 0:08:15.800 was in hospital, they were like, look, you really should 0:08:15.800 --> 0:08:20.480 do it. And amazingly, my migraines have been under control 0:08:20.520 --> 0:08:24.200 since that nerve ablation. I've had six months. Yeah, so 0:08:24.240 --> 0:08:26.920 that has I haven't had six months in years. Let 0:08:26.960 --> 0:08:29.200 alone last year where I was in bed literally ninety 0:08:29.200 --> 0:08:31.160 percent of the time. So it's been quite amazing. 0:08:31.800 --> 0:08:34.480 But so I could I just ask have you had 0:08:34.559 --> 0:08:36.240 one of those nerve oblations before? 0:08:36.400 --> 0:08:36.640 Never? 0:08:37.080 --> 0:08:39.000 Okay, so this was the first one that you had 0:08:39.040 --> 0:08:39.720 six months ago? 0:08:40.040 --> 0:08:43.160 Yes, And she said it like it will last about 0:08:43.200 --> 0:08:46.559 six months. So again my anxiety flares up because I'm like, fuck, 0:08:46.760 --> 0:08:48.520 I'm nearly at the end of the six months. Are 0:08:48.559 --> 0:08:50.800 they going to come back? So anyway, I spoke to 0:08:50.800 --> 0:08:52.920 Sammy because it's quite a commitment, like I've got three 0:08:53.040 --> 0:08:56.200 kids and it's a two week stint to go into 0:08:56.320 --> 0:08:59.599 rehab do this rehab, and I decided to do it 0:08:59.640 --> 0:09:03.600 over too lots. So I've done one week and I 0:09:03.640 --> 0:09:07.040 went in and it's in a hospital setting, but it's 0:09:07.480 --> 0:09:10.040 all mind body connection. 0:09:10.520 --> 0:09:12.880 Okay, So can you just set it? Can you paint 0:09:12.880 --> 0:09:14.800 the picture for me? Like, what's the room? Like? 0:09:15.120 --> 0:09:17.680 The room is like a hospital room. So I walked 0:09:17.720 --> 0:09:20.800 in and I cried because I'm like, oh my god, 0:09:21.080 --> 0:09:24.000 I knew it was going to be probably a hospital setting, 0:09:24.040 --> 0:09:26.160 but I'm like, I'm going to be in here for 0:09:26.240 --> 0:09:28.960 a week and I've got the white walls and you know, 0:09:29.040 --> 0:09:32.200 the wooden cupboard. They had a blanket on the bed. 0:09:32.280 --> 0:09:34.520 So that was the only difference between between that and 0:09:34.559 --> 0:09:37.400 a hospital in there's not all the kechtic equipment like 0:09:37.440 --> 0:09:39.640 a hospital, but it's laid out like a hospital. 0:09:39.920 --> 0:09:40.280 Okay. 0:09:40.360 --> 0:09:42.559 And then each day you get you have a schedule 0:09:42.559 --> 0:09:46.520 for the week and you'll have a physio hydrotherapy and 0:09:46.559 --> 0:09:48.400 so I was looking at that shit, going this is 0:09:48.480 --> 0:09:50.520 I don't need this, Like I can walk, I do 0:09:50.800 --> 0:09:52.840 I walk, I do pilates. I don't need any of that. 0:09:52.920 --> 0:09:54.679 And then each day you do a class and it 0:09:54.760 --> 0:09:59.880 might be on pacing or breathing and mindfulness or an 0:10:00.000 --> 0:10:03.080 no other one was medication. So each day you have 0:10:03.440 --> 0:10:07.120 just one session with a specialist and then one class. 0:10:07.160 --> 0:10:08.760 So I also looked at it and was like, I 0:10:08.800 --> 0:10:11.080 have so much spare time here. This is insane, Like 0:10:11.120 --> 0:10:13.560 I'm going to be brought out of my brain. So 0:10:13.640 --> 0:10:16.480 the first day I arrived, I had physio. It's very 0:10:16.520 --> 0:10:20.000 different physio. None of its hands on and all of 0:10:20.080 --> 0:10:23.680 the specialists work together, like they have a meeting every 0:10:23.760 --> 0:10:27.640 day about each patient, and so. 0:10:26.520 --> 0:10:28.400 So what do they do in a session if you 0:10:28.520 --> 0:10:29.600 don't So it. 0:10:29.520 --> 0:10:32.880 Was like all of them kind of incorporate meditation and breathing. 0:10:32.960 --> 0:10:36.640 Even the physios and she kind of looked at how 0:10:36.679 --> 0:10:40.160 I sat and talked to me a bit about my posture, 0:10:40.960 --> 0:10:44.040 talked about breathing, how to stand up and stuff like that, 0:10:44.160 --> 0:10:46.920 and I was like, okay, still really hesitant. Then went 0:10:46.920 --> 0:10:49.800 into a first class and we did a breathing exercise 0:10:50.040 --> 0:10:53.080 and I was just like, this is horseshit. Still I've 0:10:53.120 --> 0:10:56.800 done this stuff. I've meditated before. Then Anyway, as the 0:10:56.840 --> 0:10:59.360 week went on, I'm like, I actually haven't done this 0:11:00.160 --> 0:11:01.959 I meditate, but I have it on my to do 0:11:02.080 --> 0:11:06.360 list to mark off, like yeah, I'm never present or 0:11:06.400 --> 0:11:08.600 in the meditation. I'm like, meditating is good. I'm going 0:11:08.679 --> 0:11:11.560 to do this, I'll mark it off. Like I realized 0:11:11.640 --> 0:11:14.480 during that that I have it as a job as 0:11:14.480 --> 0:11:17.319 opposed to it really helping me. So everything they teach 0:11:17.360 --> 0:11:19.960 has a science behind it. But it took me four 0:11:20.000 --> 0:11:22.040 days to drop in because I was like, I've done 0:11:22.080 --> 0:11:25.000 all this, this is horseshit. And I said to one 0:11:25.040 --> 0:11:27.079 of the people taking the class, I said, I'm really 0:11:27.120 --> 0:11:30.600 resisting this and she's like, is it not medical enough 0:11:30.600 --> 0:11:32.280 for you? And I said, yeah, I think it's that 0:11:32.440 --> 0:11:34.160 I think I was coming here to go I'm going 0:11:34.200 --> 0:11:37.199 to alter my medication. I'm going to have kind of 0:11:37.240 --> 0:11:39.640 a quick fix, and it made me realize this is 0:11:39.679 --> 0:11:43.080 a lifelong Yeah, there's no cure for this, and there's 0:11:43.160 --> 0:11:45.920 no quick fix. And it took me until day four 0:11:45.960 --> 0:11:48.720 where I dropped in and I was like, Okay, I 0:11:48.760 --> 0:11:50.800 can see this is actually going to be of benefit 0:11:50.880 --> 0:11:51.040 to me. 0:11:51.679 --> 0:11:56.480 When you talk about the meditating aspect, how was the 0:11:56.520 --> 0:11:58.920 way you were meditating there with them different to how 0:11:58.920 --> 0:12:00.480 you would meditate at home. 0:12:00.720 --> 0:12:04.160 I think just hearing it from a professional and them saying, 0:12:04.559 --> 0:12:06.600 you know, we live in our so we've got a parrot. 0:12:06.640 --> 0:12:09.480 That's getting a bit technical, but a parasympathetic nervous system 0:12:09.480 --> 0:12:12.920 and a sympathetic nervous system, And the sympathetic nervous system 0:12:13.000 --> 0:12:16.080 is where I own fright, fight or flight constantly, which 0:12:16.080 --> 0:12:18.800 is where I live, and where when you go over 0:12:18.800 --> 0:12:22.199 to the parasympathetic nervous system is where your healing does. 0:12:22.640 --> 0:12:25.400 Where you're healing is your resting is. And so it's 0:12:25.440 --> 0:12:28.400 constantly trying to get over to there more often. And 0:12:28.440 --> 0:12:31.040 I think even having that in my mind of when 0:12:31.040 --> 0:12:33.560 I'm feeling stressed, going I'm in my sympathetic how can 0:12:33.600 --> 0:12:36.280 I get into my parasympathetic and that might be I've 0:12:36.320 --> 0:12:41.679 learned like a box breathing meditation, which everyone should look 0:12:41.720 --> 0:12:42.079 that up. 0:12:42.760 --> 0:12:45.680 Yeah, I do that, and my husband does that. James 0:12:45.679 --> 0:12:49.120 does that with our oldest daughter eating per lot. Yeah, 0:12:49.240 --> 0:12:53.120 it's really good, and I learned it for her, but 0:12:53.240 --> 0:12:55.559 now I use it myself, yeah all the time to. 0:12:55.960 --> 0:12:58.319 Yeah, where I've been using that. So it's breathing in 0:12:58.400 --> 0:13:01.000 for say four or five deep breath, holding for four 0:13:01.120 --> 0:13:03.280 or five, letting it out for four or five, and 0:13:03.679 --> 0:13:07.280 it's picturing a box. Simple, I knew it, but it's 0:13:07.520 --> 0:13:10.760 using it and actually dropping into it. And then I 0:13:10.800 --> 0:13:14.560 do guided meditation. And then another physio taught me like 0:13:14.840 --> 0:13:16.760 a body thing where it's kind of like your tense 0:13:16.840 --> 0:13:20.679 up and then release tense up and release different parts 0:13:20.679 --> 0:13:24.160 of my body. And I find that all of those 0:13:24.200 --> 0:13:28.079 combined have been really helpful. Again, it sounds like nothing. 0:13:28.320 --> 0:13:31.600 Yeah, can you do like a little video or something 0:13:31.640 --> 0:13:35.080 and like show us how you tense up and release. 0:13:35.840 --> 0:13:40.480 Yeah, it's kind of difficult because it's so subtle. It's 0:13:40.480 --> 0:13:43.480 almost like tensing and muscle releasing. And then I go 0:13:43.559 --> 0:13:46.960 through different parts of my body. And I also realize 0:13:47.000 --> 0:13:49.800 how my shoulders are always up at my years, so 0:13:50.120 --> 0:13:52.800 constantly they're like, slide your shoulders down your back, and 0:13:52.840 --> 0:13:55.840 so I feel that myself sliding them down, and my 0:13:55.960 --> 0:13:58.880 jaws always clenched. So I'm trying to it's just making 0:13:58.920 --> 0:14:02.000 me more conscious. Yeah, And I got home from rehab 0:14:02.040 --> 0:14:06.160 and I had the best week I've had in years, 0:14:07.480 --> 0:14:10.560 literally years. I know it can't be linked because I 0:14:10.640 --> 0:14:13.720 know this is all a slow burn, but I had 0:14:14.520 --> 0:14:17.920 so much energy and I didn't have even a headache, 0:14:17.960 --> 0:14:20.000 and I'm like, this is what it feels like to 0:14:20.040 --> 0:14:21.840 be normal, Like I just. 0:14:21.840 --> 0:14:24.360 Don't go getting off, don't go getting all normal on me. 0:14:24.640 --> 0:14:26.520 I'm like, well, I can't do a chronic if I'm 0:14:26.560 --> 0:14:29.160 fixed anyway. Of course, I feel like the last couple 0:14:29.160 --> 0:14:33.040 of days have just been absolutely exhausted, but it's so 0:14:33.120 --> 0:14:36.360 worth doing so for anyone who has chronic pain, it 0:14:36.480 --> 0:14:39.560 is so worth looking at. I was so anti it, 0:14:39.680 --> 0:14:42.640 and it took me literally four days before I went okay, 0:14:42.680 --> 0:14:44.520 I can see the benefit of this, and then I'm 0:14:44.560 --> 0:14:46.600 left on the fifth day, but I can't wait to 0:14:46.600 --> 0:14:47.280 get back now. 0:14:47.640 --> 0:14:50.840 And it also the next bit, Yeah, amazing. It also 0:14:50.920 --> 0:14:54.680 goes to show just how like connected we are, like 0:14:54.720 --> 0:14:57.600 how connected our mind and body really are. 0:14:57.960 --> 0:15:00.400 It's so connected. And I always knew do that, but 0:15:00.440 --> 0:15:03.240 I don't think I got to the extent. And I 0:15:03.280 --> 0:15:06.880 realize one of the things I'm trying not to do 0:15:07.080 --> 0:15:09.800 is get. I get I'm quite all or nothing, And 0:15:09.840 --> 0:15:13.440 I find myself meditating all the time, and I'm like, 0:15:13.480 --> 0:15:16.680 this isn't sustainable, Like you're doing this so intensely that 0:15:16.760 --> 0:15:19.320 it's not going to be doing what you want it 0:15:19.400 --> 0:15:22.400 to do. So it's almost like what I've learned I 0:15:22.440 --> 0:15:26.520 have to just put into my day as I can continually, 0:15:27.000 --> 0:15:29.760 as opposed to going, oh my god, Okay, i'm feeling stressed, 0:15:29.800 --> 0:15:31.600 I'm going to lie down and meditate, because that's not 0:15:31.640 --> 0:15:33.000 real life. I'm not going to be able to do 0:15:33.080 --> 0:15:33.760 that all the time. 0:15:34.040 --> 0:15:38.200 And also meditating can look really different for different totally, 0:15:38.520 --> 0:15:42.720 So I'm not great at all at meditating. I do 0:15:42.800 --> 0:15:44.920 like a really if I'm feeling anxious about something, I 0:15:44.960 --> 0:15:48.680 might do like a quick, like five minute kind of meditation, 0:15:48.840 --> 0:15:51.680 But other than that, it's just it doesn't it's not 0:15:51.720 --> 0:15:54.840 for me. But like I might get that kind of 0:15:55.520 --> 0:16:00.400 meditative state by like going, you know, through a swing course. 0:16:00.280 --> 0:16:03.800 Something totally and everyone does it differently. I just guess 0:16:03.800 --> 0:16:06.320 it's having all those tools in your tool about to 0:16:06.400 --> 0:16:10.040 pull upon because even in like I've been home for 0:16:10.080 --> 0:16:12.000 a week and the week that I was there, I 0:16:12.000 --> 0:16:15.840 can tell a difference like I actually can, and so 0:16:15.920 --> 0:16:18.160 it makes if you can see a difference, it makes 0:16:18.200 --> 0:16:20.720 you want to do it more. You know, I'm like, Okay, 0:16:20.760 --> 0:16:23.320 I can stick to this. So anyway, I've got another 0:16:23.360 --> 0:16:25.680 week coming up, and I don't know if it's just 0:16:25.760 --> 0:16:28.680 been luck that I've had a good week or if yeah, 0:16:28.720 --> 0:16:31.720 it has been coming into play. But like you said, 0:16:31.720 --> 0:16:33.720 how can it not like our mind body connection, And 0:16:33.760 --> 0:16:37.600 I realize how stressed and anxious I have been Like 0:16:37.640 --> 0:16:40.760 my body they say, like your body gets locked, it's 0:16:40.840 --> 0:16:43.520 like stuck, and then your you know, your mind is 0:16:43.560 --> 0:16:46.440 and then your whole body does a coping mechanism where 0:16:46.480 --> 0:16:49.160 it all tenses up to protect you. And so it's 0:16:49.240 --> 0:16:53.960 kind of undoing all that it's made. It's interesting. 0:16:54.840 --> 0:16:56.880 Yeah, I'm really proud of you. You went and you 0:16:56.960 --> 0:16:58.200 gave it a good shot. 0:16:58.280 --> 0:16:59.960 Even I gave it a good shot, and I'll keep 0:17:00.160 --> 0:17:02.600 doing it. But anyway, we always ask to hear from 0:17:02.640 --> 0:17:05.479 you guys, and I thought this voice memo we got 0:17:05.600 --> 0:17:09.600 was quite interesting book, because especially with what you're facing with, 0:17:09.840 --> 0:17:12.119 really something that's going to take over your life for 0:17:12.160 --> 0:17:17.119 a couple of years. Yeah, So I wanted to ask 0:17:17.200 --> 0:17:21.840 you this question and hopefully also help our beautiful listener Alex. 0:17:22.440 --> 0:17:27.119 Okay, Hey, girls, So I wanted to ask you both 0:17:27.880 --> 0:17:33.960 how you go about explaining your chronic fatigue and your 0:17:34.080 --> 0:17:39.560 need to have these rests to your children, because my son, 0:17:39.720 --> 0:17:43.520 he's at an age where he understands and he worries 0:17:43.560 --> 0:17:46.800 about me, and he sort of asks, oh, you know, 0:17:46.880 --> 0:17:48.000 are you feeling better today? 0:17:48.040 --> 0:17:48.280 Mom? 0:17:48.480 --> 0:17:51.720 Or you do you need to lie down? Do you 0:17:51.880 --> 0:17:52.840 need a rest today? 0:17:52.920 --> 0:17:53.760 Mom? 0:17:53.840 --> 0:17:56.720 And that sort of makes me worry about him that 0:17:56.760 --> 0:18:01.600 I'm putting on all of this extra stress on him, 0:18:00.040 --> 0:18:05.560 and I just don't know how to sort of, you know, 0:18:06.600 --> 0:18:09.359 make it a little bit easier for him to understand 0:18:09.400 --> 0:18:13.240 and I guess not worry about me, and he shouldn't 0:18:13.280 --> 0:18:17.320 really be worrying about me because he's a child. But 0:18:17.400 --> 0:18:20.400 I just wanted to know how you guys deal with 0:18:20.400 --> 0:18:21.080 that side of. 0:18:21.040 --> 0:18:22.640 Things with your own children. 0:18:23.480 --> 0:18:24.600 By the way, love you guys. 0:18:24.760 --> 0:18:26.440 Thank spapeh. 0:18:27.080 --> 0:18:29.840 Thank you, Alex, I won't lie. That kind of breaks 0:18:29.840 --> 0:18:35.120 my heart a little bit. And I really feel that, Alex. 0:18:35.200 --> 0:18:39.840 I really really feel that because my oldest in particular 0:18:40.000 --> 0:18:44.399 is a real thinker and warrior, and if she can 0:18:44.440 --> 0:18:48.320 see that I'm not doing well, it will really stress 0:18:48.359 --> 0:18:51.840 her out. So I don't know if this would help 0:18:51.880 --> 0:18:55.520 you at all, Alex, but we have this system where 0:18:56.600 --> 0:18:59.480 Edie will set my oldest. Edie will say, how you're 0:18:59.480 --> 0:19:02.119 feeling out ten? Mom? I think I've mentioned it on 0:19:02.240 --> 0:19:07.359 here before. And then because what I was doing for 0:19:07.400 --> 0:19:09.760 so long was I kept saying, Oh, I'm fine, No, 0:19:09.880 --> 0:19:12.239 mommy's fine, I'm good, No, I'm not tired, and no, 0:19:12.320 --> 0:19:15.479 I'm great, But then she can see that I'm not. 0:19:15.920 --> 0:19:19.119 So I'm here telling her I'm fine, I'm great. But 0:19:19.160 --> 0:19:21.640 then she can see, but you're not really walking very 0:19:21.640 --> 0:19:26.240 well today, And so I was told that is really 0:19:26.280 --> 0:19:30.040 confusing for her, and it's much better to be honest 0:19:30.520 --> 0:19:32.760 than try and hide it, because if you try and 0:19:32.840 --> 0:19:35.720 hide it, she doesn't trust what you're saying, and that 0:19:36.200 --> 0:19:39.800 then leads her to think the absolute worst. So we 0:19:39.880 --> 0:19:42.360 have this system and she'll say, how are you out 0:19:42.400 --> 0:19:45.639 of ten? And I. You know, there are some days 0:19:45.680 --> 0:19:48.239 when you know I'm not having a good day, and 0:19:48.280 --> 0:19:53.119 I'll say, look, i'm at seven today or a six today. 0:19:53.200 --> 0:19:56.960 But then she can see like that, I'm still doing everything. 0:19:57.040 --> 0:19:59.159 You know, I'm still taking her to school and picking 0:19:59.160 --> 0:20:02.359 her up, and we're still you know, I'm still making dinner, 0:20:02.400 --> 0:20:05.680 and we're still playing board games over you know, over 0:20:05.720 --> 0:20:09.120 dinner and things. So I say, look, it's not amazing 0:20:09.160 --> 0:20:12.199 today like six or seven, but you know, hey, I'm 0:20:12.240 --> 0:20:15.200 still doing all these things. So I think that's been 0:20:15.280 --> 0:20:19.280 really good for her. And I guess in some way 0:20:19.520 --> 0:20:21.240 gives her some control as. 0:20:21.040 --> 0:20:24.320 Well, yeah, because she knows where you're at, as opposed 0:20:24.320 --> 0:20:27.359 to guessing or in mind making up like Mum's fucked, 0:20:27.440 --> 0:20:28.440 Mum's fucked. 0:20:28.280 --> 0:20:31.080 Like yeah, yeah. And you know, there are some days 0:20:31.600 --> 0:20:33.600 when you know I might not be having a great day, 0:20:33.760 --> 0:20:37.120