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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 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.
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 word “disabled” around.
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]
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什麼是慢性疲勞症候群 (What Is Chronic Fatigue? // Vlogmas Day 18 [CC])

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MouseP 發佈於 2018 年 9 月 23 日
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