- 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
you know, doing a chore or something and I'll be like, bam,
done, just like no energy completely, will have to sleep
right there and then.
Like sometimes I literally will just have to sleep
on the floor, like wherever I've just sort of landed,
very frustrating.
- One of the biggest game changers in my life has been
getting a wife who can drive because I can be somewhere
and I'm like "Okay, I have 20 minutes before I pass out."
And if she's there, I can be like, "20 minutes."
And she goes "Okay, walk back
"to the car takes three minutes."
Put me in the car, fast track home 'cause we've got the car,
get me out of the car, on the sofa.
- You can't just lay in the street unfortunately.
- You know where my favorite place to pass out?
- Where? - John Lewis.
- John Lewis? - They're so kind.
- That's so sweet, that's so sweet.
I usually get a lot of, "Do I need to call the paramedics?"
- Yes. - "Has this happened before?"
- It's very difficult to
convince people to not call an ambulance.
- Yes, it's not gonna help, it's really not gonna help.
- I hate A and E so much. - Me too.
- Because it's one of my biggest energy drains.
The thing about chronic fatigue and ME is that obviously
it affects everyone so differently that we all have
very different personal things that will drain us.
So for one person, it may be doing a lot of mental activity
would be more draining than walking from place to place
and then for someone else, they're like
"As long as I don't move, I can spend hours
"thinking of something and doing classwork."
- [Chloe] Yeah.
- A and E is my nemesis. - Your highest stress.
- It's my drain.
Because I can't access food when you're
at A and E and you can't access drinks.
I drink a lot, I drink about eight
liters of water, liquid a day. - Wow.
That's good though, people should drink more water.
- It's great for my skin.
So like I dislocated my jaw the other day.
(Chloe wincing)
And I just sat-- - Casual.
- It was the day before we were moving.
- Oh no. - It was so great.
- So I was just sat at the table having dislocated my jaw
on some egg fried rice and Claudia's like
"Should we go to A and E, do you think?
"Do you?
And I said "No." - Please don't.
- "I don't have the energy for A and E.
"You're gonna have to fix it."
Obviously I didn't say this to her because I couldn't
say anything and she was like, "We should go to A and E."
And I was like, "No."
Yeah, to go to A and E, I just knew would have wiped me out
and then wiped me out for probably the next two days.
So it was just like, you're gonna have to fix this.
- Go ahead. - She did.
- What did she have to do? - Very impressively.
- Click it into place?
- What they actually do at A and E, we found out
through texting my sister-in-law who is a doctor.
It's called the syringe. - Okay.
- So they get a syringe and they put it
between your teeth and then roll it.
- Okay.
- And something about the way that they
roll it means that your jaw like goes forwards
and back to where it's supposed to be.
So yeah, so avoiding things that
wipe you out is always a good idea.
- Identify your triggers, the earlier you can do that,
the better it will be for you.
The earlier that you can pinpoint what specifically
affects you or the most about you and your,
whatever condition you have, this works
for anything whether it's mental or physical.
Write notes if you're not sure.
Like if you suddenly start feeling very fatigued or very,
very depressed or very disassociated
in the current case of somebody who has
Dissociative Disorder like I do, write it down.
Say what was I doing just before this, what time is it?
Sometimes you might be able to find links
between what time you're taking your medicine
or how much water you've had in a day,
what you've been doing recently.
It can be so different for everybody
and it might not be what you're thinking.
- Ask the people around you to check as well.
- Yes. - Because often you're gonna
get quite fatigued and not know what's going on
and you might not be able to remember
what you were even doing before you got so tired.
But someone next to you would be like, "Yeah,
"you were just chatting and then
"this thing happened and you were gone."
- [Chloe] Yeah.
- Something I think is very important,
don't feel bad about cutting stuff out of your life.
- No. - Even if that's a person.
- Self-care always has to come first.
At the end of the day,
you're the person who's living your life.
Yes, you can choose who's in it and who's not but if
they're not supportive or if they're making you feel worse,
it doesn't matter what's going on in their life,
you're not responsible for anyone else's healing
except your own and it's very important that
you take responsibility for your own healing.
You're not a bad person by taking care of yourself.
- My favorite thing about self care is
the idea that you can't help someone else put
their oxygen mask on until you've put your own on.
- That's a good one, yes.
We're absolutely-- - We're good.
- We're full of energy right now.
- We're great, let's go for that five-K run.
Thank you so much again for making this video with me.
- Thank you for having me.
- And I suggest you all go and follow lovely, lovely Chloe,
she's a delight. - Oh, thank you,
you're a delight. - You're welcome.
And you can go and click the top link in the description
to watch the other video that we have made together,
which is all about life with a chronic invisible illness.
- Yes, yes, it's gonna be fun.
So please do come over for some more banter.
- And we'll see you there.
Bye bye. - Bye.
(relaxed ensemble music)