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  • - Hello, lovely people.

  • - 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?

  • - I don't do that. - Is that just me?

  • - I'd like to be able to make dinner

  • occasionally without being stressed about it.

  • Sometimes I get halfway through--

  • - I'm so sorry by the way that I'm just covering you.

  • - No, it's nice, it's kind of grounding actually.

  • - Oh, in that case. - To touch the tulle.

  • Give me all of this. - Enjoy.

  • - Thank you.

  • Yeah, sometimes I'll get halfway through like cooking or