Placeholder Image

字幕表 動画を再生する

  • 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 mywhat are my disabilitiesvideo

  • 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 itand 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.