WEBVTT - Fatigue dictates everything 0:00:04.600 --> 0:00:08.960 H chronic time. It's a chronic time. Are you sick? 0:00:09.200 --> 0:00:14.720 When sick? That was not good, mate, that was not good. 0:00:15.880 --> 0:00:18.680 Not a good start to the prodigy. It's Monty here 0:00:18.800 --> 0:00:22.040 and Brook with you. Our podcast is all about chronic 0:00:22.040 --> 0:00:24.360 health because if you don't laugh, you'll cry. I have 0:00:24.480 --> 0:00:27.520 chronic migraines, chronic fatigue, pots, mcs, you name it. I 0:00:27.560 --> 0:00:28.200 fucking lot it. 0:00:28.480 --> 0:00:33.080 Haha. I'm just gonna go with MS. Now you've stripped back. 0:00:33.440 --> 0:00:34.400 Yeah, I'm back. 0:00:34.640 --> 0:00:38.400 Well, I just kind of it just trumps everything else. 0:00:38.479 --> 0:00:40.880 So oh no, MS wins, MS wins. 0:00:40.880 --> 0:00:42.159 All right, you totally win. 0:00:42.720 --> 0:00:45.159 Hey, before we get into some of the stuff you 0:00:45.200 --> 0:00:47.559 guys have sent in, which we absolutely love, I heard 0:00:47.720 --> 0:00:48.920 Brook you got a new dog. 0:00:49.600 --> 0:00:51.760 Yes, I've got a dog. 0:00:52.080 --> 0:00:54.560 And what the fuck? I can't believe you surrendered. 0:00:54.840 --> 0:00:56.800 I'm not really a dog person. 0:00:56.880 --> 0:01:00.000 I've never had a dog before ever, and my husband 0:01:00.040 --> 0:01:04.160 and my two daughters have been badgering me for years 0:01:04.200 --> 0:01:07.800 to get a dog, and I finally caved. But my 0:01:07.880 --> 0:01:11.160 husband came to me with this idea, and this is 0:01:11.200 --> 0:01:14.240 what turned me around. So he said, there's this place 0:01:14.280 --> 0:01:16.240 you can go. A couple of our friends have used it, 0:01:16.280 --> 0:01:18.320 a place you can take your dog. It's in the 0:01:18.400 --> 0:01:21.319 Hunter Valley here in New South Wales, and you send that. 0:01:21.400 --> 0:01:24.279 Once the dog is born, you send them there straight 0:01:24.319 --> 0:01:27.360 away for you can do four weeks or six weeks, 0:01:27.640 --> 0:01:29.560 and we did six weeks. Once the dog is born, 0:01:29.640 --> 0:01:33.280 the breeder sends them to this farm training camp kind 0:01:33.280 --> 0:01:36.560 of thing and they train the dog for you, so 0:01:36.680 --> 0:01:40.039 you don't have to go through those hard early days 0:01:40.080 --> 0:01:42.319 where you know, people say that they're like a baby 0:01:42.360 --> 0:01:44.880 and they wake up in the night and all that 0:01:44.959 --> 0:01:47.400 kind of stuff. So we did that, and so we 0:01:47.520 --> 0:01:50.640 got her names the girls have called her. So we 0:01:50.680 --> 0:01:52.480 did that and she arrived just a few days ago, 0:01:52.480 --> 0:01:55.840 about three or four days ago, and she is complete 0:01:56.240 --> 0:02:02.120 heaven like, she is so well trained it's unbelievable. So 0:02:02.320 --> 0:02:05.080 from the day she got here, like she's so say, 0:02:05.160 --> 0:02:08.400 four nights every night you put her to sleep in 0:02:08.440 --> 0:02:11.600 the laundry with like a baby gate thing, and she 0:02:11.639 --> 0:02:15.280 will sleep there from like nine o'clock until six o'clock 0:02:15.320 --> 0:02:18.120 when we get up, and like, wow, not a peep 0:02:18.120 --> 0:02:21.240 out of her, not a single peep. She knows like 0:02:21.360 --> 0:02:23.480 not to go on the couch, She doesn't go. 0:02:23.480 --> 0:02:27.040 Up on my stairs. It's amazing. Oh my god, I 0:02:27.080 --> 0:02:29.680 hate a barker. But if you've got chronic health issues, 0:02:30.760 --> 0:02:32.639 that's almost the way you've got to do it. Because 0:02:32.720 --> 0:02:34.560 if I had a dog and I was waking up 0:02:34.600 --> 0:02:36.920 to it all through the night, I don't want it 0:02:36.960 --> 0:02:39.280 pissing on the floor. There's no way. The boys are 0:02:39.320 --> 0:02:41.280 desperate for a dog, and I'm like, no chance, Like, 0:02:41.320 --> 0:02:45.800 there's no chance. I also don't like everyone's like, you 0:02:45.960 --> 0:02:47.440 like my dog. I'm like, I'm not gonna like your dog. 0:02:47.480 --> 0:02:49.200 I don't want to. There's not one part of me 0:02:49.240 --> 0:02:51.320 that wants to pat a dog, like, not one part. 0:02:51.960 --> 0:02:53.560 Well, she's really grown on me. 0:02:53.800 --> 0:02:56.120 I thought I would be like that too, but already 0:02:56.160 --> 0:02:58.320 she's really grown on me. She does this cute thing 0:02:58.400 --> 0:03:00.680 where she like comes up to me, like sitting on 0:03:00.720 --> 0:03:02.800 the couch, and she knows she can't come on the couch, 0:03:02.960 --> 0:03:05.560 which is just like incredible, but she'll just like put 0:03:05.560 --> 0:03:09.200 her head like on my knee or something. And then 0:03:09.720 --> 0:03:11.679 she started doing this thing but only to me, where 0:03:11.680 --> 0:03:14.240 she'll put her pour up like she's holding my hat. 0:03:15.120 --> 0:03:16.400 Oh that's pretty cute. 0:03:16.480 --> 0:03:17.360 It's so cute. 0:03:17.880 --> 0:03:20.040 I still don't want to pour in my hand, but anyway, 0:03:20.120 --> 0:03:22.079 something you've got to watch out for. Is I heard 0:03:22.160 --> 0:03:25.519 on the radio yesterday that I forget what dog food 0:03:25.560 --> 0:03:28.079 brand it is, but they're trialing like this fit bit 0:03:28.240 --> 0:03:31.239 kind of thing for dogs because they're like dogs will 0:03:31.280 --> 0:03:34.080 eat all the time, and they manipulate their owners for 0:03:34.160 --> 0:03:36.200 their owners to think they're hungry, so they're like, fuck, 0:03:36.240 --> 0:03:39.119 i'll feed you again. Fifty percent of dogs are obese 0:03:39.520 --> 0:03:43.960 in Australia. So they're doing this collar where through it 0:03:44.040 --> 0:03:46.880 you keep track of the calories it's eaten and the 0:03:47.040 --> 0:03:50.080 exercise it's done. So then you stop overfeeding your dog. 0:03:50.520 --> 0:03:53.160 That's a bit fat, don't you think? Yeah, totally. 0:03:53.200 --> 0:03:56.360 It's like it's an apple watch basically for a dog. 0:03:56.520 --> 0:03:57.320 It grows around it. 0:03:57.480 --> 0:03:59.640 Yeah, that's ridiculous. I mean we feed our dog twice 0:03:59.640 --> 0:04:01.440 a day. I mean, I have no idea how often 0:04:01.440 --> 0:04:03.320 you're supposed to feed your dog. But this is all 0:04:03.320 --> 0:04:05.680 come from this training place where they're like, you feed 0:04:05.680 --> 0:04:06.600 it twice a day. 0:04:06.840 --> 0:04:10.200 This is what you give her. So that's all we're doing. 0:04:10.440 --> 0:04:12.640 Just follow what they're saying that. Yeah, but it can 0:04:12.680 --> 0:04:14.840 almost be like a therapy dog for you. A lot 0:04:14.880 --> 0:04:17.359 of people have therapy dogs. Yeah, there you go. You 0:04:17.360 --> 0:04:19.640 can have the therapy dog. But when I think of 0:04:19.920 --> 0:04:23.240 like kind of therapy, beautiful things like dogs are really 0:04:23.279 --> 0:04:26.760 regulating for the system, so that will be beautiful for you. 0:04:27.200 --> 0:04:29.680 But my mom, this is going to horses now, so 0:04:29.920 --> 0:04:32.880 a little different to dogs. But my mum and I, 0:04:33.200 --> 0:04:35.920 obviously before she passed a couple of years beforehand, went 0:04:35.920 --> 0:04:39.599 to Gwing Ghana the health retreat, which was the most 0:04:39.680 --> 0:04:41.960 beautiful thing. And I'm so thrilled Mom and I did 0:04:42.000 --> 0:04:44.120 it together because it's so special, like it's so fan 0:04:44.240 --> 0:04:46.559 of one of those so fancy, one of those things 0:04:46.560 --> 0:04:49.080 that you can't do many times. As soon as we 0:04:49.120 --> 0:04:51.640 got to the horses, it came up and it nuzzled 0:04:51.680 --> 0:04:54.880 into Mum's lung where her cancer was. 0:04:55.360 --> 0:04:57.720 Oh my god, that's amazing. 0:04:58.040 --> 0:05:03.159 It was phenomenon. It was like very It wasn't just 0:05:03.200 --> 0:05:05.599 a oh that's quite a coincidence. It was like, oh 0:05:05.640 --> 0:05:09.000 my god, it's another lady there in a different group 0:05:09.040 --> 0:05:11.440 had breast cancer and it did the same thing to her. 0:05:11.800 --> 0:05:14.080 But one of the things we also did was you 0:05:14.200 --> 0:05:17.080 stood in the kind of rainy thing and she'd let 0:05:17.080 --> 0:05:19.120 go of the lead, so the horse was just standing 0:05:19.240 --> 0:05:21.880 near you and you'd have to use your energy to 0:05:21.920 --> 0:05:24.719 get the horse to run around you. So you would 0:05:24.839 --> 0:05:27.600 like lower your energy, not say anything. It was all 0:05:27.640 --> 0:05:30.480 about energy. Lower your energy and the horse would start 0:05:30.880 --> 0:05:33.680 to trot. I like, bring up your energy and it 0:05:33.680 --> 0:05:37.080 would go faster. Anyway, everyone does it beautifully. Of course 0:05:37.080 --> 0:05:39.760 I can't get my fucking horse to move because of 0:05:39.760 --> 0:05:43.120 course I'm dead inside. It just doesn't move. And she's like, 0:05:43.200 --> 0:05:45.360 oh my gosh, you've got so many issues. I'm like, yeah, 0:05:45.400 --> 0:05:47.960 no shit, I'm like, what if you're here doing horse therapy, 0:05:48.320 --> 0:05:51.960 is the only one that doesn't move? Mine was the 0:05:52.000 --> 0:05:57.920 only one that didn't move, and I was getting embarrassed. 0:05:57.960 --> 0:06:01.520 I was like, just move, horsey, please smooth. And the 0:06:01.520 --> 0:06:03.800 more I would stress, the more bloody stub and this 0:06:03.880 --> 0:06:12.720 horse would get like you couldn't hide, you know, I know. Anyway, 0:06:12.800 --> 0:06:15.400 how have you been lately? How is everything going with you? 0:06:15.680 --> 0:06:16.200 Ye're good. 0:06:16.520 --> 0:06:20.000 It's so funny because Ye're good, you know, is always 0:06:20.080 --> 0:06:24.320 my go to answer. I laugh about that because often 0:06:24.560 --> 0:06:26.840 my family and friends will listen to the podcast and 0:06:26.839 --> 0:06:27.640 they'll say. 0:06:27.480 --> 0:06:29.320 Oh my god, I didn't know this or this or 0:06:29.360 --> 0:06:30.280 why didn't you tell us this? 0:06:31.160 --> 0:06:35.080 And it's really made me realize that I don't really 0:06:35.320 --> 0:06:40.440 tell anyone much at all, and on this podcast, because 0:06:40.480 --> 0:06:44.680 I'm talking to you, Monty and to everyone else, and 0:06:45.080 --> 0:06:48.000 assuming that the people that are connecting with us on 0:06:48.200 --> 0:06:52.320 the podcast are also chronically ill, I feel like it's 0:06:52.360 --> 0:06:56.920 a different space, so I can't talk really freely and honestly. 0:06:57.839 --> 0:07:01.080 But then I almost forget that other listed. 0:07:01.880 --> 0:07:03.839 Yeah, well, this is a good thing because you don't 0:07:03.880 --> 0:07:05.839 have to repeat yourself. We can just pass this on 0:07:05.880 --> 0:07:07.320 and go this is how I am at the moment. 0:07:07.600 --> 0:07:08.880 Yeah, yeah, that's right. 0:07:09.080 --> 0:07:11.400 But yea, no, look, I'm really like one of the 0:07:11.400 --> 0:07:13.760 big things I'm struggling with at the moment is fatigue. 0:07:14.280 --> 0:07:20.680 Yeah, it's just it's really hard. It's really Yeah, it's challenging. 0:07:20.720 --> 0:07:24.120 It's really challenging and really is affecting the day to 0:07:24.200 --> 0:07:25.280 day everything. 0:07:26.200 --> 0:07:30.120 Yeah, what it does. And I reckon, like we touched 0:07:30.120 --> 0:07:33.040 on a couple of podcasts ago that how we think 0:07:33.160 --> 0:07:35.920 most people who have a chronic illness would have chronic 0:07:36.000 --> 0:07:39.480 fatigue because it's so unbelievably taxing. But when my headaches 0:07:39.520 --> 0:07:42.320 are okay, my fatigue just smashes me. I think when 0:07:42.920 --> 0:07:45.840 my migraines are so bad, I'm in bed resting anyway, 0:07:45.920 --> 0:07:48.960 it's not the forefront. It's yeah, the focus is the migraines, 0:07:49.000 --> 0:07:53.960 where when they're gone, the fatigue is so unbelievably bad. 0:07:54.240 --> 0:07:56.760 Like I told you last night, i Otis, my four 0:07:56.800 --> 0:07:59.120 year old, woke up at like two and I had 0:07:59.120 --> 0:08:00.800 to go on laying with him. He was wide awake, 0:08:00.840 --> 0:08:02.960 so that was an hour and a half. It took 0:08:03.040 --> 0:08:04.920 me to get back and then Sam woke me up 0:08:04.960 --> 0:08:08.200 at seven, which for most people is a really reasonable 0:08:08.280 --> 0:08:10.680 time and a time that I would love to I'd 0:08:10.680 --> 0:08:12.720 love to get up even earlier. But my whole day 0:08:12.800 --> 0:08:16.040 now I'm exhausted, And then my anxiety gets worse because 0:08:16.040 --> 0:08:17.400 I'm like, oh god, I've got to do this with 0:08:17.480 --> 0:08:19.400 the kids. When am I going to get to rest 0:08:19.520 --> 0:08:22.840 and podcasting? Like I didn't want to cancel on you, 0:08:22.960 --> 0:08:24.600 But then I'm like, I'm not going to be in 0:08:24.720 --> 0:08:29.280 fine form, Like the fatigue is fuck. 0:08:29.280 --> 0:08:30.200 And it really is. 0:08:30.360 --> 0:08:33.600 I think also it's really hard for people that don't, 0:08:34.240 --> 0:08:36.480 you know, those people that don't have any illness, like 0:08:36.559 --> 0:08:40.880 chronic illness, to understand the fatigue, Like it's not a 0:08:41.000 --> 0:08:45.080 normal tiredness and it doesn't matter how much rest and 0:08:45.120 --> 0:08:48.560 how much sleep you get you don't ever feel rested. 0:08:48.960 --> 0:08:51.880 You know, like an never person to get ten hours 0:08:51.880 --> 0:08:54.280 sleep and feel like they'd had a great sleep and 0:08:54.280 --> 0:08:55.319 feel rested the next day. 0:08:55.360 --> 0:08:58.720 But that doesn't happen with us. Yeah, that's not just 0:08:58.760 --> 0:08:59.560 not how it works. 0:09:00.360 --> 0:09:02.760 No, so I'm with you. But we got a voice 0:09:02.800 --> 0:09:05.679 memo from one of you around chronic. 0:09:06.200 --> 0:09:07.360 Yes, oh this is fitting. 0:09:08.840 --> 0:09:12.280 Hey, ladies, love the potty. I have a kidney disease 0:09:12.600 --> 0:09:15.200 and as a result of this, I also now have 0:09:15.320 --> 0:09:18.440 chronic fatigue. I know you both have this as well, 0:09:18.600 --> 0:09:20.520 so I'm looking for any tips that you might have 0:09:20.640 --> 0:09:22.960 to keep it at bay. How do you deal with 0:09:23.000 --> 0:09:25.560 this in social ways? I just don't feel like my 0:09:25.600 --> 0:09:29.360 friends and often family really understand. Often when I say 0:09:29.400 --> 0:09:32.360 I'm tired or I can't do something because I'm too tired, 0:09:32.520 --> 0:09:36.000 they say, yeah, me too. How do you help get 0:09:36.000 --> 0:09:38.000 your friends and family to understand that it's not the 0:09:38.000 --> 0:09:39.280 same as just being tired. 0:09:41.360 --> 0:09:44.880 Yeah, we'll pass on this, Thank you very much, the starters. 0:09:44.960 --> 0:09:46.960 Ye give it this episode. 0:09:47.640 --> 0:09:51.040 My patience which is awful because people do feel tired, 0:09:51.200 --> 0:09:53.679 and it's yucky when you feel tired. I get that, 0:09:53.720 --> 0:09:56.360 But my patience for when people tell me they're tired. 0:09:57.280 --> 0:09:58.480 It is not there. 0:09:58.800 --> 0:10:00.079 It's almost fun to do. 0:10:00.080 --> 0:10:02.840 Do you say, I just kind of say nothing. I 0:10:02.920 --> 0:10:06.200 just got like because it's like I get it, and 0:10:06.240 --> 0:10:10.160 it's a normal thing that people feel tired. I just 0:10:10.760 --> 0:10:13.640 when they say it, have no compassion for it, because 0:10:13.679 --> 0:10:16.720 I'm like, that's tired, Like you have no idea. When 0:10:16.760 --> 0:10:21.880 I'm tired. It's not tired. It's complete exhaustion. It's a 0:10:21.920 --> 0:10:23.040 whole other ball game. 0:10:23.360 --> 0:10:27.720 I try and explain it, like it is like trying 0:10:27.720 --> 0:10:31.480 to walk through quicksand like your body is so heavy 0:10:31.679 --> 0:10:33.560 and it feels like if you can think of a 0:10:33.559 --> 0:10:35.640 time when you've ever had the flu, like it feels 0:10:35.720 --> 0:10:38.680 like the heaviness of when your body has a flu, 0:10:38.840 --> 0:10:42.360 Like you're walking through Quicksand I think that's how I've 0:10:42.400 --> 0:10:45.720 been trying to describe it. But it's it is really 0:10:45.800 --> 0:10:48.080 hard for people to get their head around. And I 0:10:48.160 --> 0:10:52.720 find it hard when my darling husband would say he's tired. 0:10:53.520 --> 0:10:55.480 You know, he might have been you know, he's probably 0:10:55.520 --> 0:10:57.520 you know, been away for work for a few days 0:10:57.559 --> 0:10:59.120 or something, and it'll come back and say, oh, I'm 0:10:59.120 --> 0:11:02.160 really tired, And I get it. You know, he is tired. 0:11:02.200 --> 0:11:06.120 And that's absolutely fair and justified. But you know, he's 0:11:06.200 --> 0:11:08.560 the one person I can say, oh my god, are 0:11:08.559 --> 0:11:11.760 you kidding me? Like, I don't want to hear about 0:11:11.760 --> 0:11:14.800 you being tired when you're staying in a hotel for. 0:11:14.840 --> 0:11:15.360 A few days. 0:11:16.000 --> 0:11:18.440 True. Yeah, I completely get it. 0:11:18.480 --> 0:11:20.360 And now it's like, you know, he'll often say to me, 0:11:20.400 --> 0:11:22.280 oh God, I'm so tired and say, oh my god, 0:11:22.280 --> 0:11:24.480 I'm sorry, Like I know it's you know, it's nothing 0:11:24.520 --> 0:11:26.240 compared to what you're going through. 0:11:26.640 --> 0:11:28.280 And I don't want him to feel like that either. 0:11:28.320 --> 0:11:31.480 So I get that it can be hard for other 0:11:31.520 --> 0:11:34.360 people to understand because if you haven't been through it, 0:11:34.440 --> 0:11:38.160 how would you know how hard and debilitating it. 0:11:38.400 --> 0:11:41.040 That's the thing with any of this. Unless you're actually 0:11:41.040 --> 0:11:43.480 going through it, you can't get it. But the fatigue, 0:11:43.559 --> 0:11:45.240 for me, I looked up and I was like, oh, 0:11:45.280 --> 0:11:48.400 you know, just researching a little bit about chronic fatigue, 0:11:48.880 --> 0:11:52.880 and it was saying that other symptoms of chronic fatigue 0:11:52.880 --> 0:11:56.439 syndrome unrefreshing sleep, which you said, like no amount of 0:11:56.480 --> 0:11:59.400 sleep that you get the brain fog that comes with that, 0:12:00.040 --> 0:12:03.760 eat the brain fog. Yeah, it's one of the most 0:12:03.760 --> 0:12:06.920 frustrating things for me because I can't find words. I 0:12:06.960 --> 0:12:10.080 make mistakes all the time. Unless I write things down, 0:12:10.120 --> 0:12:12.400 I forget it. I hate it. 0:12:12.240 --> 0:12:13.440 Yeah, like I hate it. 0:12:13.559 --> 0:12:16.880 I've interviewed so many people with I've been doing a 0:12:16.920 --> 0:12:19.199 series for the Cinney Morning Herald and the Age about 0:12:19.400 --> 0:12:22.600 chronic illness and people who have chronic illness, and one 0:12:22.640 --> 0:12:26.080 of the big recurring themes is always the chronic fatigue. 0:12:26.160 --> 0:12:28.319 I think it's like ninety percent of people with the 0:12:28.400 --> 0:12:32.520 chronic illness also have chronic fatigue. And what they often 0:12:32.559 --> 0:12:35.640 say is to your point about you know, slurred speech 0:12:35.679 --> 0:12:37.520 and not finding the right words. That often, like by 0:12:37.600 --> 0:12:41.560 the afternoon, they're just like they can't function, they can't work, 0:12:41.600 --> 0:12:44.679 they can't like they often just can't even talk by 0:12:44.720 --> 0:12:45.400 the end of the day. 0:12:46.160 --> 0:12:48.400 That's how I feel. But then you've got a family 0:12:48.520 --> 0:12:50.520 and you've got things going on, you kind of have 0:12:50.600 --> 0:12:52.560 no choice, so then you push it through, which then 0:12:52.640 --> 0:12:53.360 makes it worse. 0:12:53.559 --> 0:12:56.280 Yeah, and sometimes, like you know, I'll even say to 0:12:56.400 --> 0:12:58.760 my girls at like the end of the day, I 0:12:58.800 --> 0:13:01.920 actually just can't even like talk, like I just don't 0:13:01.920 --> 0:13:05.240 even have that energy to like talk. I'm sorry, I'm 0:13:05.280 --> 0:13:09.920 so sorry, But that's the honest truth and even like 0:13:10.200 --> 0:13:12.520 I don't know if you find this, but like just 0:13:12.520 --> 0:13:14.440 to kind of, I guess, like paint a picture of 0:13:14.480 --> 0:13:16.880 what it can be like, Like I often, you know, 0:13:16.920 --> 0:13:18.880 I used to always like have a shower every morning, 0:13:19.120 --> 0:13:21.559 and I love a bath in the evening. But I 0:13:21.679 --> 0:13:24.719 like find having a shower in the morning so exhausting, 0:13:25.000 --> 0:13:27.640 like so exhausting. If I have a shower, I'll need 0:13:27.679 --> 0:13:29.760 to go and like lay down for a bit because 0:13:29.840 --> 0:13:34.079 I am exhausted and like and little things like there 0:13:34.080 --> 0:13:37.520 are some days when, like you know, I'm reaching up 0:13:37.600 --> 0:13:40.480 to get a mug out of the cupboard and I'm 0:13:40.559 --> 0:13:45.280 like out of breath, like exhausted just from that movement. 0:13:45.840 --> 0:13:50.640 Like that's how severe it can totally. 0:13:50.880 --> 0:13:54.280 Yeah, yeah, they're also what comes along with that is 0:13:54.800 --> 0:13:59.040 you know, explaining all of that is it's also embarrassing. Again, 0:13:59.120 --> 0:14:01.600 we keep coming back to this embarrassing thing, but it's 0:14:01.960 --> 0:14:05.000 I often feel like our family's quite full on and 0:14:05.040 --> 0:14:07.400 Sam does so much that I feel like I also 0:14:07.520 --> 0:14:12.000 don't have the freedom to go. I'm so exhausted right now, 0:14:12.040 --> 0:14:15.640 Like blinking is an effort for me, Like you know, 0:14:15.679 --> 0:14:17.600 when your eyes are so heavy, it feels like you've 0:14:17.640 --> 0:14:20.760 got cement on them, or yeah, oh, Sam will get 0:14:20.760 --> 0:14:22.840 home and go what did you do today? And I 0:14:23.080 --> 0:14:25.640 feel like I'm scrambling for things to say because sometimes 0:14:25.680 --> 0:14:28.880 I've spent majority of the day in bed, or I've 0:14:29.240 --> 0:14:31.480 gone down to the supermarket and that's all I have 0:14:31.520 --> 0:14:35.880 capacity for to do. Interestingly, another one of these things 0:14:36.280 --> 0:14:41.080 is light sensitivity, which I absolutely have huge light sensitivity. 0:14:41.320 --> 0:14:44.160 Muscle and joint pain and headache. Do you get joint pain? 0:14:44.760 --> 0:14:46.480 Yeah, I have a lot of It's hard to tell 0:14:46.520 --> 0:14:50.440 her this joint pain. Yeah. I blocks in like my face, 0:14:50.600 --> 0:14:54.200 my head, my leg my hip for nerve. 0:14:54.120 --> 0:14:57.520 Pain yeah, yes, so you don't. And then the chronic 0:14:57.520 --> 0:15:02.000 fatigue probably exacerbates it. Duma pain, bloating and nausea, that's 0:15:02.200 --> 0:15:06.200 very you. Yeah, yeah, sinus problem, swollen glands, tend to 0:15:06.320 --> 0:15:09.800 lymph nodes, sore throat. Yeah. So there's so much else 0:15:09.840 --> 0:15:12.480 that comes with it. And of course it's mainly women, 0:15:12.600 --> 0:15:15.320 most common amongst women twenty to fifty years old. 0:15:15.520 --> 0:15:19.200 Of course, it makes me think actually on this topic 0:15:19.520 --> 0:15:23.520 for you, because people think when you say you've got 0:15:23.520 --> 0:15:26.120 coin fatigue, you feel a bit like and I also 0:15:26.120 --> 0:15:28.520 feel a bit embarrassed to say that because I think 0:15:28.520 --> 0:15:32.640 people feel like, oh, you're just really tired and you 0:15:32.680 --> 0:15:34.760 have that. But then on the other side of the coin, 0:15:34.800 --> 0:15:37.680 you also have chronic migraine, which a lot of people 0:15:37.720 --> 0:15:40.640 probably also assume is just like a really bad headache, 0:15:40.960 --> 0:15:43.240 you know, so you kind of have a double whammy 0:15:43.480 --> 0:15:45.480 where it's hard. 0:15:45.280 --> 0:15:45.840 To keep playing. 0:15:46.080 --> 0:15:49.760 People can relate totally, and that's why I'm constantly no, 0:15:49.880 --> 0:15:52.040 and you can't unless you've got it, But I constantly 0:15:52.080 --> 0:15:53.960 am like, I wish it was a different part of 0:15:53.960 --> 0:15:57.320 my body, Like I really wish that. I don't know, 0:15:57.360 --> 0:16:00.960 people seem to unders like for me and have back pain. 0:16:01.040 --> 0:16:03.360 So somebody who's got really bad back pain who can 0:16:03.360 --> 0:16:06.480 barely move, I'll be like, fuck, that's hectic because I 0:16:06.520 --> 0:16:09.520 don't experience that, and everyone's familiar with back pain, or 0:16:10.240 --> 0:16:13.400 it's just because it's so invisible, which most of us 0:16:13.440 --> 0:16:19.280 listening have these invisible illnesses, and also something that's slightly 0:16:19.320 --> 0:16:22.960 linked to how people experience it that they feel like 0:16:23.320 --> 0:16:27.280 I feel like sometimes people and I know that Sam doesn't, 0:16:27.280 --> 0:16:29.360 but sometimes I feel like you thinks I'm whacking it 0:16:29.400 --> 0:16:29.800 on a bit. 0:16:30.240 --> 0:16:32.760 Yeah, right, okay, do you know what I mean? Oh God, 0:16:32.840 --> 0:16:34.920 he would never think that people. 0:16:34.760 --> 0:16:38.720 And again that's my embarrassment or I think people might think, oh, 0:16:38.720 --> 0:16:42.560 she uses as an excuse, or you know, like when 0:16:42.600 --> 0:16:46.200 I've said I make mistakes sometimes with work staff. My 0:16:46.400 --> 0:16:49.480 brain foggy is so bad. It's really hard for me 0:16:49.520 --> 0:16:52.840 to concentrate on things. And like I'll go down the 0:16:52.880 --> 0:16:54.800 street and I'll even have a list of things to do, 0:16:54.840 --> 0:16:57.440 but I'll still forget three things. I'll miss three things 0:16:57.440 --> 0:17:00.360 that are on that list. Yeah, because my brain's it's not. 0:17:00.360 --> 0:17:01.120 With it not there. 0:17:01.640 --> 0:17:04.480 It's funny because Monty, I like, you know, we've known 0:17:04.520 --> 0:17:06.880 each other for a long time, like almost twenty years 0:17:06.880 --> 0:17:12.000 i'd say, and well before my MS diagnosis, and we 0:17:12.080 --> 0:17:15.439 used to holiday together a lot, and you would often 0:17:15.520 --> 0:17:18.800 take naps on holiday, like during the day, and I 0:17:18.920 --> 0:17:20.720 just always knew, like that was just who you were, 0:17:20.880 --> 0:17:23.080 that was you know, like you had to do that 0:17:23.720 --> 0:17:26.520 but could not relate to it at all, but knew 0:17:26.560 --> 0:17:30.159 that like that was a really serious, you know, health 0:17:30.240 --> 0:17:32.440 issue for you and that you needed to take time 0:17:32.480 --> 0:17:35.159 throughout the day and certain things would exhaust you, but 0:17:35.240 --> 0:17:38.760 yet couldn't relate. And it is just the weirdest thing 0:17:38.920 --> 0:17:42.760 for me now to have like the ms come on 0:17:42.840 --> 0:17:45.359 and then this like just like at the same time, 0:17:45.440 --> 0:17:48.520 it's just such a bizarre thing, but now I'm. 0:17:48.359 --> 0:17:50.119 Like, I get it, I get it. 0:17:50.119 --> 0:17:53.640 It does make me think and like appreciate the fact 0:17:53.640 --> 0:17:56.320 that if you haven't experienced it, it would be so 0:17:56.480 --> 0:17:57.240 hard to. 0:17:57.040 --> 0:17:59.920 Totally Yeah, it's the same with you as you recently 0:18:00.119 --> 0:18:02.879 had about a pretty bad anxiety which was the result 0:18:02.960 --> 0:18:05.520 of some medication that you were having from hospital. So 0:18:05.600 --> 0:18:08.960 you've got a glimpse of what it's like. Yes, where 0:18:09.000 --> 0:18:11.280 now you're in it full time with your chronic fatigue, 0:18:11.280 --> 0:18:14.360 but you can't there's no way that you can get it. 0:18:14.840 --> 0:18:18.640 I just am shocked that people don't feel the way 0:18:18.680 --> 0:18:21.080 I feel the time, you know, when it becomes your 0:18:21.200 --> 0:18:24.840 normal and I'm like, aren't you all fucking exhausted? And 0:18:24.880 --> 0:18:27.480 when people say they never even get a headache, I'm like, what, 0:18:28.480 --> 0:18:31.320 it's so foreign to me. I can't believe that bodies 0:18:31.560 --> 0:18:32.440 work properly. 0:18:32.720 --> 0:18:34.520 I know, it's so unfair. 0:18:34.880 --> 0:18:38.080 It's also like, you know what, I read this thing 0:18:38.359 --> 0:18:41.159 and it was like to understand chronic Like for a 0:18:41.200 --> 0:18:44.000 normal person to understand how chronic fatigue feels, they would 0:18:44.000 --> 0:18:45.160 have to stay awake. 0:18:45.640 --> 0:18:48.600 So no sleep zero sleep for three. 0:18:48.440 --> 0:18:51.439 Whole days and nights, three days and three nights, and 0:18:51.480 --> 0:18:54.320 then they would understand how you feel, like every single 0:18:54.440 --> 0:18:56.040 day effort. 0:18:56.119 --> 0:18:57.520 That's real tasting. 0:18:57.920 --> 0:19:00.560 Yeah, and it does sometimes it does feel that Like 0:19:00.640 --> 0:19:03.439 sometimes it reminds me of when I used to go 0:19:03.480 --> 0:19:05.240 out all night and come home when the sun was 0:19:05.280 --> 0:19:09.640 coming out, like exhaustion. Like that's how it feels day 0:19:09.680 --> 0:19:10.080 to day. 0:19:10.640 --> 0:19:11.760 Yeah, those days are gone. 0:19:11.880 --> 0:19:15.960 Like I'm in bed, like as you know, because often 0:19:16.000 --> 0:19:18.479 we'll be messaging stuff and I'll be like, I'm in 0:19:18.520 --> 0:19:20.600 bed now, Like I'll be in bed by seven thirty, 0:19:20.840 --> 0:19:23.720 like yeah, and I just and even that is a 0:19:23.760 --> 0:19:25.600 real stretch, like I'm waiting for my husband to get 0:19:25.600 --> 0:19:27.400 home so i can like go to bed. 0:19:27.240 --> 0:19:27.760 Go to bed. 0:19:27.840 --> 0:19:28.080 Yeah. 0:19:28.160 --> 0:19:28.520