Subtitles section Play video Print subtitles (cheerful Christmas music) - Hi, everything else in this room is a mess. Just keep watching me, okay. Did I have another video planned for today? Yes. Am I feeling so horrific that I'm refusing to leave my bed even to put make up on? Yes. Does that mean you're gonna have to sit through this entire video staring at my millipede eyebrows? Also yes. Do I care about that? Not in the slightest. Okay, maybe a bit. They are really stupid eyebrows. Today, I feel awful. That's not fair, not the worst, it's not like the worst I've ever felt, it's a sliding scale, from mildly ill to pneumonia. Today, I just woke up not my best, I've got a sore throat, I feel disgustingly nauseous, I feel like an animal has died inside of me, fiends everywhere. No, I just feel like inside, you know, 'cause this... Can I explain? Do you ever get that feeling sometimes where you just feel like one of your organs has decided to vacate? Like, just nah? That's how I feel. Just pounding brain, and I feel like all my bones are grinding on each other. So, for me, being ill, which is a kind of funny term, because obviously, my normal is technically ill, but I still call feeling worse being ill. Basically, I have two types of a bad day, in bed, and it's either that my body is like "Pfft, nah," I've given up, but my brain still works, or it's that my everything, everything has given up. And I thought that today was a day where my body was bad, but my mind was good, so I could still work from a laptop, and edit and stuff. But now, I'm trying to film this video, and I'm realizing, maybe my brain is not doing so well. And luckily, thanks to all of you, I have a job that is very flexible, and I can do it from my bed. And I'm sort of my own boss. I'm not, really. You're my boss. I guess I'm my own line manager. Sorry, my top keeps falling down. This is an original 1950s night dress, okay? It doesn't like to stay on me. It recognizes I was born too late. So yes, since my job involves raising awareness of disabilities and chronic illness, I don't need to worry too much on the days that I feel awful, because... I mean, other than not being able to make videos, which means that I can't then make money, but the job that I have is about raising awareness of the not doing well, so the not doing well doesn't have to make it bad. I keep seeing this thing out of the corner of my eye, and assuming that it's Clara standing right there, and it's not, it's just my coat, which Clara would never wear, so weird choice. Is this filming? It was filming. But, I have had a Lemsip, by the way. Maybe I need another Lemsip. I should have another, I'm gonna message Clara. I've definitely run out of my Lemsip. Train of thought. So, why do I keep working when I feel terrible? Like, when I feel really bad, why do I keep going? So, I was given an honorary PhD last year. Don't worry, this is going somewhere, it's not just me bragging. It's a little bit me bragging. So, I was awarded the PhD by Worcester University, a good university, for my services to awareness-raising of disabilities and chronic illness, being an advocate and activist thing. And it would be dishonest of me if I didn't show you what everything looked like. Which is not to say that the happy, "Yay, let's skip through a field," or "have excessive fun on a tricycle" is not me, because is, I just... Changeable. And things come with a balancing dollop of "can do good stuff," "can only stay in bed." Wow. But sometimes, I struggle to share negatives, and to share the negative of me. I think both because for my own mental health, I tend to take negatives, and then I put them to one side. Not always consciously. I think my brain, I've just trained it to focus on positives, and find positives in everything, and it's therefore much easier to do than if I'm looking for a negative in something. But it's also because I've been ill for a very long time, and I don't necessarily remember what a normal body feels like, and how to explain how my body feels to someone who has a normal body, and how to conceptualize that for them, in a way that is understandable for them. So I told Claude last night that my body was close to hitting the wall, which is when everything just shuts down, and I flop. And I told her it was like when you're running, and then everything seizes up, and you taste that blood, and you cannot run any more. Hi, you can come bring me Lemsip, it's fine. Thank you. That was very fast. It's very efficient service here! - [Clara] You're welcome! - So, I told her it was like running, and everything clenches, and you feel like you can't go any further, and she said, "You don't know what running feels like." And was offended, for all of about a second, before I realized that "Yeah, yeah, no, "she's got a point, fine." Oh God, my back is very painful today. I don't know what running feels like in someone else's body. I know what running feels like in my body. Do I? I know what running felt like in my body. When was the last time I ran somewhere? I don't necessarily know what it feels like to have a body that isn't in pain, or isn't tired, and that, therefore, I think, leaves me with gaps as to how best to explain things. I try and relate it to things that people often experience, or can conceptualize. So, often, when I feel really bad, I feel like I am entirely made of scar tissue, like I am a scab that got picked off too soon. No, I'm not the scab. I'm the skin underneath the scab that got picked off too soon. Because most people will have had, at some point, a scab, and probably picked it too soon. I feel like I should maybe have put in some kind of a warning about there being a scab reference. We'll do that, we'll go back. It's fine, it's fine. Or, I try to relate it to, trigger warning, vomiting, that feeling that you get before you vomit, because most people will have, at some point, been ill, or got too drunk, or, why else would you be sick? I don't know. They would have been sick. Most people have been sick, right? Even if it was just when you were a kid. And you remember that feeling right before, where you're like, "Oh God, it's happening, whoa," and you can't control your body from doing something. And it's often a very brief feeling, but for ill people, it's a similar feeling, it just lasts longer. I feel like my head is made of cotton wool, and I don't know that I'm explaining properly. And also, this Lemsip's really hot, but I really want to drink it. Someone told me the other day that they knew an author who said that the driving factor in all of his books was Lemsip, and having a Lemsip every morning made him a great writer. I feel that, I feel that. I'm gonna make more writing content on my channel, yet I am unclear as to how. What would that look like? It can't be very fascinating. It would just be me, like, I don't know. Watching me write probably isn't very fun. Although, I could do a livestream, because that would encourage me to continue writing, 'cause I'll have to sit there with all of you watching me. And you could do something at the same time, like your homework, for instance. And then every time I hit another page, we'll have a little celebration together. Would that work? Would that be a livestream that anyone would like to see? Let's try that, and see what happens. That's not what this video's about. Another thing, I don't know how people can recognize what's wrong with their body. Often, I really struggle to isolate the thing that's wrong. Is it my heart, is it my stomach, is it my intercostal muscles that feels particularly weird? Yesterday, I had this feeling that was like... It was here, so that's where my heart is, so I guess it was my heart, and it was like, is it beating too fast? Is it beating too slow? I just can't tell. But weird. And granted, having difficulty getting feedback from your body is part of my nervous condition, so... "Nervous condition", makes it sound like I'm nervous. My nerve condition. My nerves, the things that feel stuff in your body. Yes, so it's part of that, but also, I've just never been good at it. Difficult to explain what's wrong when you can't tell yourself, you can't figure it out yourself, but you also do not have the words... It's very difficult to explain what's wrong when you cannot tell within yourself, but you also don't have the correct words to convey it to others, because we're all so varied. We all have very different bodies. Which is actually why I also like making videos like this, because if you are struggling too, or if you are feeling better now, but you were struggling before, and you want to show someone what that feels like, you can send them this video. It could be like, "Hey, "my brain is also taking a vacation today, "like Jessica's brain." It's not true, I'm talking to you, so obviously I'm not as bad, but... Mainly, I wanted to talk about when I get comments that say things like, "Oh, you don't have to. "You don't have to film, you don't have to do things." Just take some time off, and do whatever. And I'm not just saying comments on the internet, I'm saying comments in real life, whether that be family or friends, whatever, people who are like, "It's fine, just don't do it." I can't just not! I acknowledge that it's a nice comment, and I appreciate it, but also, don't worry, because by working, I'm also distracting myself from feeling ill, or being in pain, like right now, 'cause my pelvis is just grinding against itself. It's great. I had a discussion with Claude the other day about what were going to look like when we're 80. She was like, "You'll be shriveled." Thanks! Yeah, I mean... (laughs) "Your body now, in 50 years' time?" Fair enough, fine. Already hurts. On days like this, I work because I can, because there are days when it will not be a choice, when I am just completely unable to do anything, and I need to balance those days out. (yawns) Plus, you know, because, be nice to have a monthly income that was a bit steady, and not just the peaks and troughs of AdSense, which does its own thing, and makes no sense. Videos can have the same exact amount of views, and one of them makes you 30 pounds, and the other makes you 300, and you're like... I don't know, the AdSense gods know. No-one else knows. So, that. But also, if I waited until I was feeling well, I would never get anything done, you know? I mean, I'm never gonna feel well, well. Perfectly happy with the general level of illness at which I work. I know what to do to make myself not feel terrible. Do I always do that? No, because that would be very boring, and I want to live my life, thanks. It just helps to have a purpose, and it helps to see the day through, and I don't know, I'm sure many of you would relate, right? Whether you have a chronic illness, or a disability, or a mental illness, having a purpose, having something to do, even if it's something that's seemingly very silly, like posting daily on Instagram, which I really enjoy, it just helps. Which is not to say that your worth is measured by your productivity. It is not to say that at all. You shouldn't work until you're ill. I'm just advocating for us all being better at knowing our limits, you know? Knowing what is good for us more than other people know what's good for us. And if your friends and family say, "Oh, I don't think you should be working today, "I don't think you should go to school today," but it's what you want to do, and you feel like you're up to it, and you feel like you want to expend your energy doing it, it's your bloody energy. Do what the hell you like. If you wanna go to school for half the day, and then spend the next three days in bed, that's your choice, rather than someone saying, "Oh, go for an hour a day," or "Don't go at all." I think it's important to give people autonomy, to be able to do what they like. Especially when they're ill, actually. I was gonna say, "Even when they're ill," but it's especially when you're ill. Because so much of your life feels like it's just taken away from you. There are so many things that you do not get the choice, you don't get a say in. I can't play a sport, even if I wanted to. I would actually want to. But that's not the point, I can't. Sorry, I keep checking it's filming. (laughs) Hi, sorry, excuse me. Let me get my rubbish out the way. That wasn't me. Tilly's gone off in a huff. I offended her. Basically, if you can't, or you don't want to do something, fine, don't. But if you really want to, people should just let you. I had to talk some people into letting me film today, I'm just saying. Everyone in my life is always like, "Just lie in bed and play the Sims," and I'm like, "That is a privilege that I allow myself "when I'm really, really ill, "but I have a distinction "between general illness and really ill." What the hell is my life coming to? Falling into an abyss. That was very dark. (laughs) But basically, today, my body is bad. I'm dealing with a lot of pain, and I think that's just what's cotton wooling my mind. It's not that I'm mentally exhausted, or mentally tired. So, I'm going to do things. Would I film on a day when my brain was really just shutting down? Well, would I? I mean, I'll try, but remember Vlogmas 2017? My laptop does. I would like to show, I think, myself even further down in the sliding scale of illness than I am now, or than I am able to, and I filmed a video about my migraine, but it generally is quite hard to be able to film myself being ill, because when you're very ill, there's a lot of brain power that goes into filming. It's not just like, oh, switch on the camera. It's like, do you have the right camera? Is it set up on something? Have you put on the microphone? Are you pointing it at stuff? Can you see yourself? Can you turn it on? Sometimes I've tried, in the past, to film not feeling good, and I've gone the whole way through, and then realized that I didn't, like, put in a battery, or have the SD card in, or didn't even press record. Just stuff like that. And I think I would have to have someone else to do it, and then there's that kind of exploitative element to that. You know, it's pretty bad to have someone pointing a camera at me when they're meant to be helping me. But anyway, if you need to see proof of someone's illness, what's the motivation there? That's not what I'm saying. What was it, just, you know, maybe... But the people I have in my life who can hold a camera, like Clara and Claudia, are my wife and my carer, so it would be very weird if they were pointing a camera at me, when they're meant to be helping me. Am I saying I'd never do it at some point in the future, if I was working with a production crew, just to show what life is really like when you're very ill? I would definitely have them do it, for sure. It would be, I'm sure, helpful and useful to people, and something that I would like to see? I guess I would? No, well, I'd like to see someone going through stuff like that, because it makes you feel less alone, doesn't it? And that's how I help, hope, help, hope, this video has made you feel like. Maybe you also spend days in bed, ruminating on stuff, and trying to do work, although you only do, like, 20 minutes' worth of work in the whole day, because your brain is so slow. Don't know, relating. Relating. Yeah, I think that's the end of this video. I should drink this Lemsip now. I'm going to see you tomorrow, and I'll be doing better. (cheerful Christmas music)
A2 ill body illness brain clara bed Why I Film When I'm Not Feeling Good // Vlogmas 2019 Day 13 5 0 林宜悉 posted on 2020/03/27 More Share Save Report Video vocabulary