Hi today's video
coming from the floor of my bedroom. I have a
medical condition -
CFS - which Is
called Chronic Fatigue Syndrome.
It doesn't sound so bad, I know,
being tired all the time,
but
it's being
it's being tired, and
sleep doesn't- it doesn't make it better.
And when you're tired, you get this
brain fog
and
you can't remember
things. I wanted to make the video
when I
have
the brain fog
to show you, to explain.
So I try. I try.
If it's
slow. So CFS or (S?) ME
They're the same... same thing. Some people
think that
they're different, but no one really knows
what either of them are, so how can they be different if they're the same?
So what is it?
So your muscles are in pain, and
Your brain and your spinal cord- they get inflamed.
So it's like a pressure
in your head, and it makes you thinking
really, really slow. And you can't process
things. You can't, um...
If someone throws a ball at you,
It's going to hit you. You can see (mumbles) where you're looking at them. You
don't know that they threw the ball til
After it's hit you.
It's like being drunk.
Like really, really drunk.
Tired
And your muscles hurt, like hurt really badly.
And you are tired all the time, but it is
episodic so
Sometimes I am
a bit better. I could
work.
I could have a little walk maybe
with my dog, and I can go to a party or
(mumbles) I think I may have made these into cows.
Now they're kissing cows.
Because I went to the party,
because I was working really hard,
focused. Then
the next, day it's been bad, or
Maybe two or three
days, and
sleeping
doesn't make it better. I am
so much better (than) when I first had
CFs. I was 17. I was already in hospital because I was ill with
my
my normal disability which is a really, like, weird thing, no? Having a normal disability?
And then, like, an extra one. And then she's deaf, too.
So, i'm determined.
So I was seventeen, and I had a
(???), and it went
wrong, and
all my spinal shit
If you have a (???) and it goes wrong, and it stays in your body,
it's just like
it's in your body, but the fluid is just gone from your brain. The doctors think that is what gave me this thing,
but
nobody knows.
One year and a half, I was in bed, and I couldn't open my eyes
because it hurt so much.
I couldn't have any sound near me- no sound. At all. Which, I know, I know I'm deaf. This is quite comic.
Even- even a touch, a gentle
touch- that was too much. That hurt. Oof.
You could touch my bed, and it hurt me so much I would want to scream, but I couldn't scream
because the screaming hurt more. And I couldn't lift my head
because whenever I lifted my head,
all of the fluid would go down, and then there wasn't fluid in my brain.
And then I would
vomit everywhere. And just the pain all over my head
It was so bad. And I know just
pass out. and it was really slow
recovering from that.
It was lonely.
Everything hurts and you are
still awake.
But your mind is so slow, and sometimes I would come back a bit, but I'm still
trapped, and this body, it hurts. And I was kind of aware
of what was going on. I didn't speak.
cause
cause it hurt.
And my
My family had to carry me everywhere
because I didn't stand up. I couldn't walk.
So in the car, I had to lie in the back with
my brother. He's such a sweet boy. I would put my head on his lap
and lie down
And we would drive.
Then they'd have to carry me flat. When I got ill, I was in the middle of my
my exams.
Bad, bad. Don't get ill when you've got exams. And so I couldn't go to my classes
because I couldn't sit up, and I couldn't read, and I couldn't
listen. And I took all of my exams. I took them all in a room
in the dark. Lie down. And
there was this really, really nice lady who wrote down everything
that I said and
I led her with my eyes closed, and I just walked
I just dictated all my exams. And I hadn't been to school for
for a year. I was in the middle of my A-Levels. I took all of those exams, and
I passed, and I got A'S and B'S, and
I wasn't as happy as I should have, cause I wanted better, but
That's just... that's a bit crazy.
And that was hard, and getting to university took me four years.
Today, sitting on the floor is amazing.
That's so good.
So now, I'm a bit weak. I can't walk the long distance.
Sometimes
I get this thing that we call "ragdoll" in the evenings. It's like it being your body is asleep.
You're trapped in there. There's this thick, thick wall
, and you're trying to break out. And Tridia(?) can see.
So my eyes kind of go like (gestures), and she has to help me get up, up the stairs.
And undressing is hard. It's like a drunk person.
They're(?) never mean. I have to be careful because I
don't want that to happen. I need to not
do a lot of
things. I need to be
careful and do one thing, end the day, and then I need to rest.
My friends- the all understand. I'm sorry that I can't go to
all of the parties, and
I'm sorry that I
sometimes have to go home
really early, and I am
sorry
Walter that I can't take you for longer walks. And I'm sorry
when sometimes I get messages I just, I can't... I can't reply
In my life with Chronic Fatigue Syndrome, that's what it's like for me.
I hope I helped to explain a little bit.