Oh my God, migraine
I feel like I'm gonna vomit through my eyeballs
This kind of pain, actually, it makes me think of, of course,
it makes me think of Faith's knife in season 3
that Buffy then takes and stabs Faith with
Whatever, those guys need to just sit in a room really and work out their differences
and by sit in a room I clearly mean 'get it on'
Hello!
So
This video is a bit different...
Is it?
Because I feel horrible.
I feel terrible.
My head is killing me.
See, I like to have a schedule. I release my videos
two days a week
except for Vlogmas, obviously, when it'll be every single day.
But I think it's important to film
even when I feel really rubbish because
that's life, right? The whole idea is that I show you my
life as it really is, I want people to know what it's like
having
having a disability... maybe I am gonna vomit
from down here. I thought I was just going to vomit from the eyeball but...
[to offscreen] Changed my mind! I would like the bowl!
Thank you!
Thank you.
[offscreen whisper] you're welcome!
So, I thought I'd have a little sit down chat today.
Little talk about... hilariously in most videos people
seem to have tea and do the whole tea thing. I have a sick bucket
because that's my life. It's OK,
I will actually edit out any moment where I actually do vomit.
Right. Independence is actually what I want to talk to you about today.
I have been showing some more vlogs recently
that are about my, kind of, "work life"
what I do! I go off and I do
videos for other people,
TV presenting stuff, I do a bit of modelling,
I give speeches, that type of thing.
A friend of mine, who I've known for a really long time,
since before I actually became
"officially disabled"? said to me
after seeing one of these videos, 'you know that's so amazing!'
and 'maybe soon you'll be able to
go to London all by yourself and be independent'
and I was a bit like
Mm no.
Because that's just not
how it works, that's not how my life's going to work.
I'm not going to "get better"
it's not like I have an illness
that is going to get better and improve
I have a disability that has symptoms
and the symptoms change
so, a bad day: I'm flat on my back in bed
can't lift my head, can't move, can't
probably can't stop vomiting, actually. So a good day:
I can go out, I can do something,
you know, get some work done, do a little edit.
I had a great day the other day, actually, we did some
editing in bed in the morning, then we went out to the park,
we came home, I made dinner, we snuggled on the sofa
Excellent, that is a good day.
It's a tiring day but it's a really good day
so that "good day" when I do things, I'm not
doing them alone.
So I don't spend a lot of time in the house
by myself because it's not
it's not that safe, bit of a walking disaster zone
If I'm left alone I tend to forget my medication
even though I have alarms, the alarm goes off
I switch the alarm off or I kind of feel sick
so then I don't eat anything, so then I
spiral a bit, then I get a really bad
blood sugar dip, and then my blood sugar
dips too low for me to
want to eat anything to properly
look after myself so I get's worse
or I just probably injure myself a bit, really, knock into something
fall over. So I've generally always got someone with me
just in the house, they don't need to be literally next to me, like, Clara's here
or, obviously, Claudia's here, she lives here
or, you know, there's just someone else around but not
'they have to be right here this very second'
and then, going out: so we went out to the park, so Claudia drove us
to the park because I cannot yet
drive, and we went round the park
together, and if we stop off and we buy food
we go into the shop together and she
carries anything that's heavy, and then we get
you know, we pay and then the bags and
she helps me pack because... look at these things
do you think these can pack at speed? They can't. And then we drive back home
and I make dinner but she's here, in the room
checking I'm OK. You know as long as I'm not
too tired and kind of mentally with it
so I can use all my little tricks in the kitchen
to make sure that I don't come into contact with anything
that's too hot or
spill stuff everywhere
A lot of disability rhetoric is around being
independent and "independence"
is supposed to be this amazing thing
that we are all supposed to want
and I'm not saying I wouldn't like to be independent
I can't imagine
how amazing it must be
when you want something to just get into your car
and drive to that place
and buy the thing and come back
Like...
[imitates explosion]
I wish I could drive
that would be fantastic.
I need to pass my driving test
need to do that, but even once I have
I'm still not going to be able to
drive alone, because
driving obviously takes a lot of your concentration and
energy, and so I will be using
all this concentration and energy to get from point A to point B,
and then I'll be at point B and then I will,
hopefully, go into the shop and buy the thing that I want -
why is this all based around shopping?! I don't know but it is!
Capitalist society!
I've got the thing and yay! But now I'm really tired
so now what? How do I get back
home... when I'm at the place and I used my energy to get to the place
and to get the thing?
I probably have less independence now
than I did as a teenager.
If we look at independence
in terms of being physically
able to do things, physically able to go
from one place to another *alone*
and
I don't know - manage yourself, look after yourself whilst alone?
In that sense, I have less independence.
However, what I would say that I have learnt
is that the term "independent"
and "independence"
are very different when you have a disability.
It takes on a whole new meaning.
For me, I feel more
independent when I'm in my wheelchair than when I'm on my feet
because I can actually move at the pace of a normal human
Yeah! Rather than
the pace of a slug! A toddler slug!
I get to chose
where we go now! I might not be able to drive there
but I get the choice!
I get to boss my wife around!
We go where I want to go.
We buy what I want to buy.
But I - the internet!
Which is the most amazing thing ever because I can
make my own content and I wish I could make
more things! I wish I could write more, I wish I could make more videos
at a much faster rate, wish I could -
I've got all these thoughts and feelings and I want to get them out there
and it's so hard to do! I need to be OK
with that because that is the way it is, it's not actually going to change.
I have this fantastic community, really, on the internet where you can talk to
people! You guys! I can talk to you!
And you can talk can talk to me! And we can have a conversation,
and it's just the two of us,
and it doesn't
have to involve other people, I don't have to be aided, necessarily
to do it, and that's independence.
And I can order something from Amazon. If I am
so... brainfoggy and
just energy depleted, lying
on the floor, can't do anything,
UGH!
Take away!
But while I'm never really going to be able to just
take charge of my own physical
wellbeing - doing stuff by myself, bringing myself back,
being fine and happy with it - while that's not
reasonably going to happen for me, I need someone there,
you know, if I'm off to buy clothes because the
likelihood I'll faint is 50/50!
And I'd prefer to have someone there who'll catch me when I fall, rather than just
falling and some strangers going
'Oh!' Please don't call an ambulance. Dear God!
If I fall over somewhere, don't call an ambulance
because, although ambulance people are amazing and they have really
good drugs, they then have to take you to A and E,
and A and E is Hell. On. Earth.
I have been there too many times.
OK?
Anything, anything to not go back.
So, yeah! Although I'm never going to have that kind of
physical 'yeah, do what I want, go where I want!'
I still have the awesome
independence of mind
that is the internet.
So that's what this
video is saying, in conclusion. Look at me
Talking to you, rambling on, saying
what I like.
There you go.
So there you go, I think that's what independence
is.
Do you agree?
Do you agree that that can be independence?
Let me know.
Share this video with your friends
who may disagree with you
or me.
Or agree with both of us.