- Do it right?

- We're good. - Yay.

- Well done, okay.

Today I'm joined by the lovely Chloe

who runs the channel DissociaDID.

- Yes.

- Thank you, I did it right that time.

- Good job.

- We're gonna be following on from the video that I made

talking about what ME is because we both have experiences

of ME and chronic fatigue and the whole like--

- The whole shebang. - System of that.

And also just to sort of highlight that people

have such incredibly different experiences with

what is essentially classed under the same illness.

But that's not actually what your channel is about.

- No, it's not.

- Do you want to tell us little bit about your channel?

- The reason my channel is called DissociaDID

is because it's about Dissociative Identity Disorder

which used to be known as Multiple Personality Disorder.

Most of you will probably know it

as split personality or multiple personality

disorder as that is the disorder we have.

So we educate people about what it means,

what the stigmas are behind it,

what it's actually like to live with and the biology

and psychology of how that works within the human brain.

- Chloe's channel is very fascinating and I suggest you go

over there immediately after watching this video because

we will also be making a video that will go on her channel

and it will be the top link down there.

First of all, do you want to tell me

a little bit about ME, how you came by it?

- [Both] How I came by it?

- Like you picked it up one day while shopping.

- Oh yes, yes, I was like that looks great and I want it,

so I'm taking it home with me.

- [Jessica] That's exactly what happened to all of us.

- Oh yeah.

I regret my purchase and I'd like my money back please.

I thought that ME

and the chronic fatigue were the same thing.

They're not, they're different.

But I knew it as sort of an interchangeable diagnosis.

My chronic fatigue is very unpredictable and like we were

saying before, the reason that we're making this video is

to show how very varied our experiences are and I do want

to stress that just in case your disorder, if you have ME,

doesn't reflect how we experience ours,

that doesn't make you any less valid.

I get very, very tired, very, very easily

but it's more of an exhaustion than just like a sleepiness.

- Yeah.

- Sometimes it gets to the point where

I'll go catatonic which means that I can't move,

so I may be sort of frozen in a particular

position for a certain amount of time

or if somebody's squeezing my hand trying to get me

to respond like my partner was doing yesterday,

I may not be able to respond back because it feels like all

the energy is just being completely drained out of my body.

Sometimes it will come out of nowhere, so I might be walking

around perfectly happy, going on a walk to the shops,

having a great time, listening to the birds,

ready to skip away into the sunset.

Then my legs will be like, no, we changed our minds.

- We're done, we're done. - We don't want this.

It feels like pins and needles at first

and then just like a feeling of weakness and then

I just kind of, I can't put any more weight on my legs.

- A little bit like your whole body just forgot.

- Yes. - Forgot how to be.

- Yes exactly.

- When did you first start experiencing symptoms?

- I think I must have been,

you know, I might've been around 14 actually.

It was sort of tied in with my depression

because I experienced quite severe depression

from when I was around 11 years old, didn't know at the time

I was experiencing PTSD and dissociation which is

a part of Dissociative Identity Disorder, hence the name.

Along with that came the physical symptoms of ME

and chronic fatigue, chronic pain and it just became very,

very difficult to get out of bed in the morning.

At the same time, I was so depressed,

I thought that it was just the other symptoms

of depression which can be like exhaustion and fatigue.

But they just didn't get any better.

- And of course it's so common for doctors as well

to link the symptoms of ME and chronic fatigue

and be like "It's just depression."

- Yeah.

- First of all, just depression?

Is anything just depression? - Just depression.

- Yes. - But the whole idea is oh,

just work on your mental health

and your physical health will just shoot right up.

- Yeah.

"Oh, you have depression, just exercise."

And it's like well, I have chronic fatigue.

"Oh yes, that's because you've got depression.

"So just like, just work on your mental health."

And it's like.

- I got diagnosed with ME when I was 17 and I've been

taken to hospital because I've had a very bad health

kind of crisis I suppose in that

I paralyzed both of my arms for a year and a half.

- Oh my gosh.

- During the exam, because it was linked to an exam,

people were immediately like, "Oh it was stress."

- Yes. - But actually it's because

I have a nerve condition where I can paralyze my nerves

if I put too much pressure on them, as in literal pressure.

- My goodness, yeah.

- And I'd been leant on my elbow whilst

I was writing in this exam and I got a crick

in my neck and thus paralyzed my arms.

- Ouch, gosh.

- And then got rushed to hospital and they did a whole

barrage of tests on me, one of which was a lumbar puncture.

- I don't know what that is.

- It's where they take fluid from your spinal sac,

so basically there's a sac surrounding

your spine which is full of fluid.

So they took fluid from this little like special sac

(laughs) that also is the sac that keeps your whole brain--

- Stop saying sac. - Sorry.

They let a medical student do it.

- Oh no.

- And he kind of stabbed me three times.

It's supposed to be when you take the needle out that

it just closes up but I guess he had stabbed me too much.

- Oh god.

- Into my body as well and I got sent home about an hour

after the procedure and my father essentially had to like

drag me out of the hospital to our car because I couldn't

stand up straight anymore and as he was driving home,

we got halfway home and I just projectile vomited.

- No.

- Across the windscreen and my dad being my dad,

he'd been told by my mother to drop me back at home.

- Forward, onwards, everything's fine.

- Spend your weekend at home where I was like, I can't move.

And then took me back to the hospital on Monday.

- I can't believe that they let you leave like that.

- I know.

Yeah and then by the time I was back in the hospital,

they were like, well, this is a bit late.

(laughing)

- You're the one who discharged me.

Oh god. - Do anything about this,

like you're just full of cerebral fluid.

I'm like "Yes."

And then I had to spend two years lying down flat

in a dark room with like no light, no sound.

Even touch was excruciatingly painful and so during

that time, they diagnosed me with ME, I don't know.

I didn't have a moment in my past where I'd become

incredibly ill but I didn't feel like I'd ever been healthy.

Growing up I was always tired, I was always getting injured,

I was always ill.

I had the symptoms of ME or chronic fatigue syndrome.

I don't remember ever having

that freedom of being able to run.

- Yeah.

- And knowing it wouldn't impact me.

- Me too actually, now that you're mentioning this,

I'm starting to like-- - Yeah.

- I've been thinking, I was always the slowest one,

I was always the one who would accidentally or always,

I always seemed to have sprained ankles.

- Yeah. - I couldn't move around

particularly freely and I would try not to run

and stuff like that 'cause it was just exhausting.

- Yeah, I was always like the lazy one.

Bonding. (laughing)

So they were kind of telling me that this had happened

and they chose eight as an arbitrary number.

- Okay.

- I remember this quite clearly.

I don't remember a lot but I remember this.

There's a specialist ME unit in Bristol and they took me

to the specialist ME unit and the lady was like,

"Okay, so when was the catalyst

"that you suddenly became ill?"

And I was like-- - Um.

- Day zero, is that an answer on your list?

And she's like, "I'm gonna put eight."

- Eight?

I have two genetic conditions that are

obviously genetic and I've had since birth.

Chronic fatigue being a symptom of them,

it made great sense that I've not always

had a lot of energy or been incredibly healthy

and I've still not been undiagnosed with ME.

- [Chloe] Yeah.

- But I don't connect with it as a diagnosis

because like I think I have chronic fatigue syndrome.

So my doctors now say I have chronic fatigue syndrome.

But they don't say I haven't--

- [Both] Got ME.

- Yeah, I've experienced doctors using it interchangeably.

Like I have as well. - British doctors do that.

- Yeah, that's a little bit--

- That's not helpful. - No, no it's not.

I actually found out from watching

your videos that they're different things.

- Some of the sort of literature around ME and chronic

fatigue syndrome, I did find some of it really helpful,

things like when they give you the colored charts.

- Yeah? - Did you have those?

And you have to fill out the activity level of the things

that you are going to do throughout the week and then

it gives you a really good idea of what you're doing

and that was really helpful, I learnt stuff.

- It's important that, I find, to plan out when you're doing

something that even if other people might not consider it

to be high energy or high stress, your body's limits

are gonna be lower than those of other people.

If you are doing a big day out for your body,

not necessarily for what someone

else would consider a big day out,

it's important to have that time afterwards, maybe a day,

maybe two days where you can just recover

because you are gonna need to recover.

Do you find yourself forgetting sometimes that

you can't just do things other people would do?

- Yeah, I think so.

I feel like sometimes the media lies to me.

Like I watch films or television or I read a book

where someone does something and I'm like,

of course this is doable and then I'm like--

- [Both] Oh, not for me.

- Yeah.

Yes.

- Conversely is not everyone else's state of energy.

So I'll see someone, like my sister-in-law,

she goes for runs for fun. - Who does that?

- For fun and she'll be like, "Oh,

"just did a five-K, a bit tired."

And I'm like-- - Wow.

- Do other people do that?