those dreams that are pretty much
impossible those dreams like I want to
be an astronaut or I want to be a
dolphin or I want to be Brad Pitt or
something equally fleeting my dream when
I was younger was that I wanted to play
rugby for England my dream now is I just
want to play rugby again everyone’s
dreams change when you grow older for
sure they sort of downsize when you
realise the impracticality z’ of it you
realise you can’t actually become a
dolphin my dream changed for a different
reason though I got too ill to chase my
dream in 2012 aged 13 I was diagnosed
with CFS CFS is a sleeping disorder it
stands for chronic fatigue syndrome it’s
also known as M E which stands for
something long and Latin I’m not even
gonna try and pronounce for any of you
before that it was known as yuppie flu
this term has sort of gone out of
fashion however because it belittles the
illness it makes it seem less serious
than it actually is
CFS is a serious illness however it
affects a quarter of a million people in
the UK alone that’s around one in every
260 these 250,000 people will all be
suffering in unique ways
with maybe different symptoms than the
next person the only common symptom
amongst more will be this funny enough
chronic fatigue this constant tiredness
other symptoms include migraines nausea
muscle and joint pain weakened immune
system forgetfulness difficulty
concentrating sort of this mind fog and
then to top it all off you also the vast
majority of people with CFS will have
difficulty actually getting to sleep so
your body will be screaming at you to go
to bed and then you go to bed and then
you’ll be lying awake until the small
hours of the morning or you’ll be waking
up during the night it’s a pretty awful
set of symptoms my favorite analogy for
CFS is it’s like you’re living your life
one day and then all of a sudden you get
ripped out and you get put in a movie
theater and you’re watching your life go
past on the big screen and it’s like
it’s on fast-forward or
your friends they’re running about
they’re doing their own lifes they’re
doing their own things and you can’t
interact with them you’re trapped behind
this screen everything’s moving so fast
and you can’t actually do anything about
it it’s a very isolating illness feel
very alone and it’s very sudden I and I
shared this story with a lot of people
with CFS I got ill one day I took three
days off over off of school with a sore
throat and in those three days I went
from plain mug be three times a week to
staying in bed for 20 hours a day that’s
not an exaggeration I was literally too
tired to do anything else my routine was
literally wake up at 1 p.m. have a
sandwich watch bargain hunt have a bath
because I needed it and then go to bed
again at 4 p.m. that was it that was my
life for a good few months about free to
maybe six months that was all I could do
so what causes it what causes this
sudden illness
I mean seriously do any of you know
because I don’t nobody else in the world
knows it’s a very mysterious illness
studies come out and one will come out
one day and say ah we figured it out
it’s the red blood cells the cell
membranes they’re not functioning
properly and then six months later
someone else will come out and say ah
you’re wrong it’s actually the white
blood cells they’re attacking the wrong
things and then Jackie down the road
will just say that’s all in your mind
anyway get over it definitely not the
last one I can tell you that there’s
many theories as to where it originates
from I’ll share some of my favorites
with you mobile phones
something to do with the wave patterns
interfering with your brain genetically
modified plants vaccines of course
vaccines and then my personal favorite
is the the reason I’m so ill is due to
the sins committed from mankind on the
earth I mean and that’s not even my
fault like come on guys what did I do
so the problem with this is there’s if
there’s no known physical cause there’s
no easy way to diagnose it the massively
over simplifying here but the way a good
doctor with Dino diagnose CFS is you’re
take a whole heap of blood tests and
they’ll say well it’s not meningitis
it’s not you’re not anemic you’re not
diabetic you’re not pregnant we’re going
to just say you’ve got CFS and that’s
massively oversimplifying I have known
people go months or years without a
diagnosis that I’m sure of what they
have
what’s wrong with them and how to get
better so that leads on to the next
thing how do you get better well like I
say there’s no known cause there’s no
known cause so there’s no known cure
there’s no pill I can take no surgery I
can take to fix me the only known cure
is time and effort I mean I say that
there’s free things that everyone with
CFS will have been told will fix them
right out those three things are like I
said it’s all in your mind get over it
yoga and certain herbal supplements if
you get my meaning they don’t work no
area the only the only cure is time and
effort you’ve got to put in the work you
have to meticulously plan out your
everyday activity and slowly add ever so
slightly more every week or fortnight or
every month slowly climbing your way
back to normality to where you were
before CFS and it’s awful because all of
a sudden one week your progress is just
smashed apart you’re reset by months at
a time and you have no known reason why
so it’s slow and it’s painful it’s awful
and it requires much more patience then
I think most teenagers would ever have
so the last thing I want to say about
CFS and this is probably the most
important thing it affects people in
different severa T’s like with the
symptoms some people may experience
different ones to the next person
some people experience CFS way more
intensely than others I’ve known people
be in wheelchairs because their legs
hurt too much to walk I’ve known people
be hospitalized and bed bound I’m able
to stand here and talk to all of you I’m
considering myself one of the lucky ones
because of this now here’s where the
talk can go one of two ways I can either
bring out the violins tell you a sob
stories
oh woe is me and make you all start
crying but I want to do something
different because I feel like that’s
been done before what I want to do is I
want to try and focus on the positives
that I think have come about from my CFS
now I don’t want you to sit there and
think that means I’m glad I’ve got CFS
there’s not a day that goes by where I
don’t wonder what my life could have
been like without it but I think that’s
the first thing you learn with a
debilitating illness like that you learn
how to look on the bright side now I’ll
spare you my singing but it’s very
important to look on the bright side of
life seriously when you go from doing so
much just so little it’s very very
difficult in fact I’m gonna say it’s
impossible to not feel incredibly
depressed you feel worthless you look at
what you used to be able to do and what
you do now and you feel really
inadequate as a person and it took a
long time it takes a lot of thought to
realize – for me to have realized why it
was that I was feeling so bad because I
was focusing on what I used to be able
to do not on what I could do now I was
focusing on the bad part of my life
instead of the good parts you know like
the the small things and it took a while
for me to realize that the way to move
on to deal with the bad parts is to
focus on the good now I’m not saying you
ignore the bad parts because if you
ignore them then they just get bigger
and you feel guilty about it and you end
up back to square one again
but you’ve got to focus on the good
parts and acknowledged about parts deal
with them when and if you can you’ve got
to find a balance that’s almost the
second positive you find a balance in
life between good and bad focusing on
the good dealing with the bad that sort
of leads on to my second point at an
appreciation for the smaller things I
mean like I said when you go from doing
so much to so little you really are
starved for a lot of inspiration a lot
of stimulus you know you go from hanging
out with friends all the time talking to
people to hardly even like seeing your
best mate you’ve got to really search
for the good parts in your life you’ve
really got to look out for those you
know things that give you joy like the
clouds I mean the shape of clouds I’m
obsessed with clouds I can’t leave a
building
like it seriously clouds are beautiful
you will need to appreciate them more
like the gradient of the sky you know
your friends smile you find little
things that really give you joy like um
okay I’ll give you an example
yo again looking on the bright side of
life I had to drop a year in school due
to my CFS that’s something I really
didn’t want to do but because of that I
met people I met friends who I would
have had no way of knowing otherwise no
chance to actually come across in my
life without dropping the year
that’s brilliant you know I’ve met
people who I now can say are my good
friends who I love you know that there
are positives in life you got to find
the small things focus on the good shift
your perspective now another thing about
shifting perspective the next positive I
found is I realize just how lucky I am
now this is where some people sort of
raise the pitch of their voice tilt
their head and go to me but seriously I
consider myself to be really lucky
I mean look right like I said earlier
I’ve met people in wheelchairs because
of CFS I’ve met people be hospitalized
because of CFS and I’m able to stand and
talk to you that’s huge that’s amazing
I’ve got two incredibly supportive and
loving parents who have always been
there for me throughout it all who I
know I can turn to you no matter what
equally I’ve got a whole host of friends
who I really love and I know I can go to
in my times of need even this school you
know they’ve been massively supportive
I’ve known people get kicked out of
their school because they’re too ill to
attend but this school has done a lot
for me is there more they could have
done yeah maybe but have they done a lot
anyway of course they have and I’m nice
amazingly appreciative of that
absolutely I’m not just saying that
because I’m under that building right
now now that’s not to say that things
haven’t gone badly for me I mean I’ve
had this for four years now I’ve known
people who have just had it for a few
months but it’s about shifting your
perspective focusing on the good that’s
the main thing you know everyone in this
room everyone on the planet can think of
something that they’re fortunate to how
you know whoever it’s your dog or your
parents or your your partner or that
sandwich you made that was just perfect
on Friday you you are lucky you’re
fortunate to have had something to have
something you know it took years of me
feeling unlucky to realize that actually
everyone’s a little bit lucky just
depends on how you look at it now the
last thing I’m gonna talk about is I’ve
realized just how much I can do and this
is another head head to pitch raising
really moment but I realized I can do a
lot I mean yeah there’s a lot I can’t do
I can’t play rugby at the moment it’s
just physically impossible for me but I
can still watch rugby and I know that
sounds like a cop-out like a compromise
but just because there’s a lot I can’t
do doesn’t mean there’s not a whole
world of opportunity still there for me
it’s not a bad thing to compromise
sometimes like all right I can’t go to
Australia and go surfing with my friend
but I can go there and you know I still
hang out with her I can’t go to Alaska
and rock climb with my friend I can go
and just talk to him you know like
there’s a whole like host the whole
world of things that are still there for
the taking
it’s not about focusing on what you
can’t do it’s about focusing on what you
can do focus on the good things shift
your perspective appreciate the small
things it’s all about your perspective
the way you approach life will depend on
will affect what you get out of it and
just because your aspirations your
dreams may have to be downsized in life
due to factors that you have no control
over just because your dreams shrink it
doesn’t mean that they’re not still
worth chasing right that’s me done thank
you [Applause]