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  • 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.

  • I had no idea what was going on, really.

  • I was so ill, so sick that I couldn't…

  • you know, I couldn't have light or sound around me.

  • I had to lie in a dark room constantly. I had to lie down.

  • I could barely speak

  • or comprehend what people were saying to me.

  • I was also going deaf at this point. Yeah, I was pretty deaf, so

  • That didn't help.

  • But, eventually, I came out the other end of this and I got discharged from hospital

  • and there was a whole list of things that I apparently had,

  • like six things.

  • And amongst the other conditions that I've talked about before

  • so MCTD - but at the time they just said hyper-mobility -

  • and HMPB.

  • I have videos on this. It's fine, it's fine if you don't understand.

  • I also was diagnosed with ME.

  • In retrospect, this may be because I was in the only hospital in the country

  • that at the time had a dedicated ME centre.

  • Just maybe.

  • And they diagnosed that I had had ME ever since I was eight.

  • And my mother and I were very much like, “Mmm, really?"

  • "Eight?”

  • Why?”

  • What did you pick up on in the medical history that we told you

  • that happened when she was eight, because we don't--

  • I mean, she broke her arm that year, but it wasn't that.”

  • Because the thing about ME is that it has to have a start time.

  • To be diagnosed with ME, there must be a definite difference.

  • So, before ME, you were living a full life

  • of normal human energy.

  • You maybe played sports.

  • Something happens.

  • You catch an illness or one day you just can't get out of bed,

  • whereas the day before you were OK

  • and there wasn't that for me.

  • I didn't have a moment that I could pinpoint and say, “Oh, yeah, that.”

  • Unless of course it was the day that I was born.

  • So, basically, I didn't connect to any of the other stories of people who had ME

  • and you know I'd go to the special clinic,

  • the special ME clinic,

  • and I'd look at the message board and it would be like,

  • Oh, my life beforehand. I was this tennis pro and now I'm in a wheelchair,”

  • and I was like, “…Huh?”

  • because I was definitely not a tennis pro before.

  • I think I hit a tennis ball once or twice and then I got exhausted and had to sit down.

  • I also don't know what they were doing with that diagnosis, because you can't--

  • if you get diagnosed with ME, one of the diagnostic criteria for ME is that you cannot have ME

  • - although, I mean you probably can -

  • but you can't be diagnosed with ME according to their special diagnosis criteria

  • if you already have an existing medical condition.

  • But I guess because they diagnosed me with existing medical conditions

  • at the same time as diagnosing me with ME,

  • they thought that I was a loophole.

  • I mean, I do--both of my conditions already say

  • as part of their symptoms that they have chronic fatigue-inducing properties, so...

  • I would insert a joke here about how I won the life lottery in some kind of a sarcastic tone, but...

  • have you seen my wife?

  • I actually have. I have actually won the life lottery, so...

  • My final point about ME,

  • multiple sclerosis - fun fact - was once known as hysterical paralysis.

  • It was treated psychiatrically for years and years and years,

  • causing untold amounts of pain and potentially a very, very painful death.

  • Science progresses very slowly,

  • so we should not demonise people who have conditions that we don't yet understand.

  • I am a pacifist, but if anyone calls it yuppie flu,

  • I will stab them in the eye with a spork

  • Yeah, if you have ME, don't let any arsehole tell you you're just tired.

  • Sadly, the very first thing you need to know about living life with chronic fatigue

  • is how to tell arseholes to shut up.

  • Napping will not make it better.

  • Neither will exercise,

  • nor healing crystals

  • and you are definitely not lazy.

  • When it comes to strangers

  • and their insensitive comments,

  • genuinely the best thing to do is just to bite your tongue.

  • They're not worth your energy.

  • I have a limited amount of energy and I choose not to spend it on people who upset me.

  • I choose to use my limited energy on things that make me happy

  • yay!

  • or things that I really want to do.

  • If I don't want to do something, I just genuinely don't have the energy for that, so...

  • you can't really complain.

  • Can't make me.

  • I mean, unless you carry me.

  • Also, just throw the worddisabledaround.

  • It really makes people shut up very quickly.

  • When it comes to family,

  • expect more.

  • Educate them.

  • Help them to educate themselves

  • and be forgiving.

  • As hard as that may be.

  • I have family members who made fun of me as a child and now feel absolutely terrible about it.

  • You can never hate them more than they can hate themselves

  • for having made that mistake.

  • But if someone is making an active choice to make your life difficult,

  • that's not OK.

  • Walk away.

  • Just walk away. Not worth your energy.

  • One of the most important things to know about life with chronic fatigue

  • is that contrary to what other people may say,

  • exercise does not help.

  • You are fatigued.

  • You can't build up your energy because the energy that your body is using

  • is more than another person's

  • and that will always be at a very high demand.

  • So the little bit of energy you have on top of this

  • (beneath here is the energy your body is using to do ridiculous things,

  • like mine)

  • ...there's this little bit of energy on top and you need this for living your life,

  • eating food, bathing,

  • making YouTube videos.

  • Whatever it is you do.

  • So, yeah, this little bit of energy on top here

  • - if you use that energy to exercise

  • over time,

  • you do not, as other people do,

  • gain energy.

  • That's just not how that happens

  • because what's happening is you--is that flat?

  • Is that flat? That's flat now.

  • Because what's happening is if you're using this little bit of energy to exercise

  • and to do that you're harming the body.

  • Building muscle is, you know, you have to tear the muscle and then it builds itself, right?

  • So you're hurting yourself, really.

  • Your body has to use more and more and more energy.

  • Oh dear, see what happened there?

  • That's not good.

  • So you're using more--you're trying to build up your energy

  • Building up your exercise

  • but oh, that's going to hit a stumbling block.

  • Boom!

  • And now what?

  • You know, when someone tells you to exercise and you can be like, "Ha!"

  • "I'll do that, and you come back in a week and you can feed me and bathe me"

  • Although I would like to point out here that if you have a condition like mine that affects your muscles,

  • muscle tone can be quite important.

  • Not working out as in getting out of breath,

  • but doing certain exercises just to keep your body kind of a little bit stronger than it would be.

  • So, yeah, I have an exercise routine.

  • It's a bed-based exercise routine.

  • I can only do it like every three days

  • because then my body and especially my legs are pretty much exhausted.

  • But if you would like to see that, let me know.

  • Again, as I said before, you just can't push through.

  • For me, the only way that I have found to best live with chronic fatigue

  • is pacing

  • and cutting things out that aren't important.

  • Whether that be by, "I can't have a bath today

  • so I'm going to use these wet wipes and clean my body with them."

  • It's also obviously helpful to have someone else in your life

  • who can support you greatly, and Claudia is that person to me.

  • She is my fabulous wife.

  • She does so much.

  • I think the best thing about her is that she's incredibly adaptable.

  • (that I have learnt from Claudia)

  • Always be prepared to drop everything

  • and do everything

  • because suddenly your significant other / sibling / friend / partner

  • - I don't know, whoever it is -

  • might just not be able to do anything.

  • Some evenings, Claud comes home and there I am cooking dinner.

  • Some evenings, she comes home and I'm lying on the floor and I am not getting off at floor

  • until she comes home and lifts me onto the sofa

  • and then I'm on the sofa.

  • Always be prepared to sober up in a flash.

  • We'll go out to do things, like a little birthday party for someone

  • having a good time, yeah, yeah, yeah,

  • and then suddenly, oh dear, oh, the wall's hitting Jessica

  • and I've got my head on the table.

  • And normally it's my job to get us to places safely,

  • because...I love my wife, but she wanders.

  • Seriously, like we're walking along; she sees a pretty tree and she's gone.

  • I see a shiny thing and I'm gone.

  • I mean, we're not the best at walking in a straight line

  • or keeping to time.

  • Anyway,

  • So, I'm down, I'm out,

  • she's already a little bit drunk but she has to suddenly not be and she has to suddenly take care of me

  • and make sure that she can get a very, very floppy girl somewhere.

  • You can also help in the little ways.

  • Every single day,

  • even if the person is having a good day.

  • So she helps me get undressed every evening,

  • whether it's an evening that I can't physically do it myself

  • I can't use my hands or sit up or something

  • or whether that's an evening that I seem absolutely fine,

  • because, you know, it's just taking away those little--the little things

  • that use extra energy but don't have to be done by you.

  • Another great thing: she doesn't panic.

  • She knows that there is always tomorrow.

  • If I have a plan; there are five things that I want to do today -

  • that's a lie, my to-do list is never five things; there is always like ten things

  • because I apparently don't learn

  • Anyway.

  • So my ten things, and I don't get them all done

  • Her attitude is always, “It's all right, it doesn't matter.”

  • I have tried every routine medication; treatment going,

  • but for me

  • and maybe for you

  • the best thing that works is just living a slow life.

  • It's taking care of yourself and not worrying.

  • The rules don't apply to you any more.

  • Let other people worry about the latest food fad

  • or getting their five-a-day

  • or

  • being clean.

  • If you're too tired to shop for food, then that's that; move on; get a takeaway.

  • Try again tomorrow.

  • The best thing that you can do to help yourself when you have chronic fatigue

  • is just accept that this is how your life is

  • and that it's not a terrible thing;

  • it's just a different life to other people's.

  • There is no shame in having a different body to others.

  • You will be frustrated, you will cry,

  • you will curse yourself and your body,

  • but it will teach you patience

  • and kindness

  • and it will teach you strength,

  • even if only because you have to deal with arseholes quite often

  • who tell you that you're lazy.

  • It builds character.

  • It cements you. It makes you you.

  • You are stronger, better person because you have come through things and you are still here.

  • My mother taught me a very important motto for living life with a chronic illness,

  • although I think it's actually just her motto for life

  • Does it bring you health, wealth, or happiness?

  • If it doesn't, don't do it.

  • Does it matter? No.

  • Only through looking after yourself and helping yourself

  • can you help others.

  • A question I get a lot is how am I able to accomplish so much?

  • and the answer is: I'm not.

  • You just see the things that I do accomplish.

  • Remember the other day when I, like, destroyed my laptop?

  • Yeah.

  • I have an amazing team.

  • Claudia and Clara will look after everything else.

  • Everything else in my life

  • on the days that I am editing, so Vlogmas

  • It's also especially hard on the two of them. Sorry.

  • With chronic fatigue, what pacing means is not just doing one thing at a time

  • and planning, “OK, this is a lot of energy that I'll be using on this day,

  • so the next day I'm just going to do a little bit here

  • and a bit of this, OK.”

  • It's not just about choosing the amount of energy;

  • it's about choosing the thing.

  • It's about knowing that if you do this thing,

  • that is it.

  • There is nothing else that you can attempt to do

  • and it's also about being OK with that,

  • because, let's be honest, the worry and the upset

  • is draining your energy more, and that's just not necessary.

  • So, plan.

  • Plan well and expect that nothing will keep to the plan.

  • And good luck

  • and remember: on those days when you are lying there in bed or on the floor

  • or potentially out in the street

  • - hopefully not out on the street, hopefully not -

  • and you can't move or talk, or deal or think,

  • and your brain is just full of the thickest, deepest, darkest fog

  • and you cry because you think there is nothing else

  • because you think it will never, ever, ever get better...

  • Just remember:

  • it happens.

  • I'm probably there with you.

  • And I come out the other side

  • and you will come out the other side as well.

  • It's not always; it's not constant.

  • Things do change.

  • So, there.

  • I hope I have answered some questions and given you some information on chronic fatigue.

  • If there is anything else you would like to know,

  • please do comment down below

  • and I will make a second part

  • with anything that I have missed.

  • I feel like I have probably missed a lot, but you know what?

  • I'm pretty tired right now, so.

  • 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

  • [Joy to the World instrumental]

Hi, lovelies!

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什麼是慢性疲勞?// Vlogmas第18天 [CC] (What Is Chronic Fatigue? // Vlogmas Day 18 [CC])

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    MouseP 發佈於 2021 年 01 月 14 日
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