字幕表 動画を再生する 英語字幕をプリント Hi, lovelies! Today I'd like to thank Squarespace for supporting the channel, and helping me to build my new website which you'll have to wait until the New Year to take a peek at, because [clears throat] Vlogmas. It will include my personal blog, recipes, fashion, rants on life, but with a well-deserved make-over. If you need a main website or online store, you can get 10% off your first Squarespace order with the code OUTOFTHECLOSET More on that later, because right now we've got a busy day ahead of us. Hi, I'm Jessica, and I can't remember ever not being tired. This might seem strange as a Vlogmas video, but it's actually incredibly apt because, Lord, I am tired. Now, a lot of people say that they're getting very tired in the run-up to Christmas they just can't wait for the break; for the holiday. Stumbling towards Christmas. But, being tired and having Chronic Fatigue aren't actually the same thing. Also, Chronic Fatigue is not the same thing as Chronic Fatigue Syndrome Also known as ME, or - let's try and say this - [attempts pronunciation] Yeah! Said that in one. People with ME generally don't actually like their condition being called Chronic Fatigue Syndrome, because it belittles what it is. It makes it sound like it's about being tired all the time when actually it's about having incredible pain and being unable to sleep when you really, really need to and inflammation of your spinal column. With a variety of other symptoms, actually. Not just chronic fatigue. ME has a very long and complicated history. So, yes, it is characterised by long-term fatigue but there are many other symptoms, and that's what makes it special and different from just Chronic Fatigue. Although I was first diagnosed with ME, I'm quite iffy on that and I don't like using that term to describe my condition and I will probably explain more on that in a minute. But this video is just going to be about fatigue and living with fatigue. But if you would like me to make a video that is about ME - Chronic Fatigue Syndrome - all this stuff that is happening right here just specifically about that, then let me know and I'm very happy to do so. Discuss my experiences with it, et cetera, et cetera, but just to warn you it will probably drag up some painful history and I will probably cry. Like, painful memories like that time I was accidentally admitted to a psychiatric ward. You think you know all my stories. No. I have more. So, what is chronic fatigue? Other than a common symptom of many conditions. Now, I asked on Twitter if there's anything that you wanted me to say specifically about chronic fatigue and actually, one of the most asked questions was: How do I know if I have it? How do I know the difference between chronic fatigue and just generally being tired? It's basically like having the flu all the time. Chronic fatigue is not wanting to be in bed all day. Napping... Just...sleeping away the day. Although that can be a symptom of depression, so if you are feeling like that, probably go and get that checked out but it's not really the same. Chronic fatigue is utterly debilitating. It's wanting to both cry and vomit at the same time because you're so tired, but you're so tired that you can't actually move your body to do either of those things or blink. Sometimes you feel like you can't breathe. If you've ever run a marathon, you know that point where you hit the wall? Boom! The exhaustion and it just...gets you? That is what Chronic Fatigue is. Every day. It is that horrific "everything hurts." Everything is tired. Your bones are tired. This morning I woke up and my thighs were tired. Not even the muscles, just the bone. The bone in my thigh was exhausted. Chronic fatigue, it never ends. It may be persistent, just forever and ever or it may be relapsing. You may have moments where it - "You may have moments?" More than moments, hopefully - if you're relapsing, you may have months where you're absolutely fine-ish. You're able to go around your daily life and you're not thinking, "Oh, my God, I'm so tired right now." I'm actually yawning. It's a pretty appropriate video to yawn in. I'll give myself that. The thing is, it doesn't--it doesn't get better. Things that are most affected in your life was another question and again the answer to that is everything. For me, it's things like personal care. I hate that term. I think they just use it in hospitals too much and carer agencies and I've just sat through way, way too many of those disability tests that aren't really tests, but they are tests. It's like a conversation but you know it's actually a test - whatever. The government. The government is fun. Where they say, you know, what's your personal care needs? And you have to list all your needs. Basically, it's things like having a leisurely bath often or a shower. Changing your clothes, looking after your body. Obviously is deeply affected. I have been needing to wash my hair now for probably five days, but I don't have the energy to do it. I just keep curling it. Perfume - that is a good friend Yeah, and wet wipes. Always wet wipe baths. Other things: keeping in contact with friends I find I am terrible at this. I can do one thing at a time. I used to write a text about my day and then copy and paste it to the different people I love. I used to write a text about my week and then copy and paste it to all the people I love. Like, “Just to let you know what's going on with me guys. Just to let you know,” and then they would reply and then I would never respond to their replies because I was so tired by the first message I sent, it was just never gonna happen again. I find it much easier to have an actual conversation in person even though that can be tiring, I find it less tiring than having a text conversation back and forth so I'm really terrible, I'm sorry. My chronic fatigue is because I have a condition where I have a hole in my myelin sheath. That's the sheath that wraps around your nerves and protects it and my body is constantly trying to make this better, even though that is an impossible task so my body uses a lot of energy on doing that. I also have a soft tissue problem where my soft tissue is too floppy and injures very easily, so the muscle is always slightly torn and then my body puts a lot of energy into trying to fix that and trying to put that back together. And I'm in a lot of pain all the time, which of course takes an awful lot of energy. So, if I ate more vegetables, it's not really going to make a huge difference to that. And on the subject of happiness, actually, for me, chronic fatigue comes with malaise. Now, malaise I've also mentioned in my “what are my disabilities” video because malaise is a general feeling of unwellness; of uneasiness, almost. It's knowing that there is something wrong with your body. It's a constant discomfort. It's your body trying to tell you something is wrong. My body, unfortunately, does not realise I have got the message. I'm good, thanks. It's all right. It's fine. So my body is just constantly telling me, "Something is wrong." “I mean something is really wrong, Jessica. Do you know this, Jessica? Are you aware of this, Jessica? Something is really wrong with this body, Jessica. Jessica, do you know this, Jessica? Jessica! Jessica, are you listening to me?" And I'm like, “Yes!" “I'm f****** listening to you, would you stop?!” “Noo. Never!” But yes, if you are a friend of someone who has chronic fatigue or you have chronic fatigue yourself, probably one of the most important things you can ever know about the condition is that it is impossible to push through. It's just not a thing. You use your energy reserves, and unlike other people who can keep going because their body can continue to make more energy, you just don't. It's just gone. That's it. That's your energy. It's done. You have no other option. You just--you're down. Puddle on the floor, that's me. So, to give you a good idea of what life with chronic fatigue is like when it's especially bad, Um...picture: you're lying on the floor and there is the deepest, dullest, aching pain throughout your body. As if every atom of your body is exhausted and painful and screaming at you in a constant low hum of screaming agony. And you can't move. You can't move anything. You just can't. You don't have the energy to do so. Literally no energy. There is nothing there. Nothing there in fact that you can't keep your mouth closed and it's just open a little bit and then a little bit of drool just comes out and there's nothing you can do about that and it just sits there and you're too tired to wipe it away. You're too tired to close your mouth. Too tired for anything. Too tired to even care about much. That's basically life with chronic fatigue, yeah. So, my history with chronic fatigue and the whole chronic fatigue syndrome type of thing. I've sort of said this before, especially in my 'being disabled in school' video: as a child people thought that I was incredibly lazy because I was always very tired and unable to move much or do a lot. And, you know, even things that were quite fun I sort of had to be dragged to. “Don't make me go to a party.” But now I genuinely--I love parties, actually. I really love parties. I love dancing. So then I would get there and then I would be like, “I love this so much; I know I shouldn't, but I can't help it” and I do a little dance and then the next day, I'd lie on the floor and then everyone would be back to being like, “What is wrong with that child?" "Why is she so lazy?" "Look at her, just lying on the floor.” And as a teenager it got even worse so I was sort of slowing down. Really, really felt it from I guess as I was growing as well. It just got worse and worse and worse. I basically just lay around my house everywhere, unable to do much or...think much. I read a lot, actually. That was quite impressive. I'm impressed with myself for that. Everything hurt and I was pretty much just exhausted, no matter what I did. This is the sort of thing where I would, like, I wouldn't be able to make it through the school day, so I had different groups of friends and I'd lie to them all and tell them that I was going off with another group of friends for lunch. You know like when you lie to your mother that you're going to a sleepover but you're really not but your friend has also lied to their mother and said they're going to sleep at your house, but they really haven't, and then you sneak out together? So I would tell all my friends that I was somewhere else and I would actually be in my form tutor's staff room just lying down on the floor, napping. Eventually, I got to seventeen and there was this whole medical drama thing because I paralysed my arms and then everyone thought that I was either dying or faking. I was so incredibly ill at the time, I don't really even remember much of what happened. I was in hospital on the children's ward. I had these various medical tests and some of them went wrong, including a lung puncture where I lost all my spinal fluid which I've talked about before, but, really, that changed everything for me and I saw so many different specialists and it did feel great to finally have the help that I felt like I had needed for a really long time. Years and years and years of being in pain and exhausted and having people not listen to me and then suddenly there were all these doctors there and they were diagnosing me with all of these things and I'm pretty sure my diagnosis changed daily. So, over the course of about three months, it seemed like every day they told me I had something new or they were testing for something new; like, “Oh it's definitely this, definitely this.” I was like, "OK, fine, fine" And every day there would be like a new letter printed and sent to my parents. It's like, “OK, here you go: diagnosis, diagnosis, diagnosis.” I should add my parents were actually there with me; they just liked to send official letters to our house because... NHS, they do. And so, eventually, I came out of the other side feeling like this whirlwind had happened to me.