The Girl Who’s Allergic To Everything | Living Differently

The Girl Who’s Allergic To Everything | Living Differently

August 20, 2019 100 By Jose Scott


I’m allergic to my hair growing, so when it does start to grow,
it blisters and it burns and it’s absolute agony. So, I’d rather just keep it short
and have no hair and be pain free than suffer for a little bit
of hair. Since being diagnosed, I’ve had
multiple hospital admissions, multiple intensive care admissions. I never know what
I’m going to react to next. I think quite a lot of people
don’t see me as disabled, and that can be quite frustrating
when I need adaptations, because I get that,
“Oh, you don’t look sick,” or, “You don’t look disabled,” because they can’t see if
I’m in pain, they can’t see my organs swelling
internally – things like that. So, that can be quite frustrating, because I almost have to validate
my disability, which I don’t feel anybody
should have to do. Towards the end of 2012, I started getting allergic
reactions to fruit. So, when I ate an apple, my lips
would blister and feel a bit itchy. First, it was a apples, then it was
strawberries, then it was tomatoes. So, I went see my doctor
and was sent to an allergist, and they said it was
all-allergy syndrome and to carry an EpiPen just in case, because there’s an ever so slight
risk of a huge reaction. And then, about six months
after that, I was just out one day
with friends at an event, I hadn’t eaten anything new,
I hadn’t drunk anything new, and I suddenly felt really unwell. The next thing I know,
I’m being injected with things and they’re putting oxygen masks
on my face and then I lost consciousness.
They told me I’d had a life-threatening
anaphylactic reaction. They said it was probably a fluke
thing, this sometimes happens, don’t worry about it too much.
You’ve got EpiPens if you do, but it’s unlikely
it will happen again. Since my very first anaphylactic
reaction, I’ve used over 250 EpiPens. The cells in my body
called mast cells are responsible for releasing
things such as histamines. In my body,
the cells react inappropriately, so if there is an attack,
it releases chemicals, but it releases too many, or sometimes it releases chemicals
when there’s no trigger at all, so I have completely
spontaneous reactions. Reactions can vary. They can be anything from
just feeling under the weather – itchy, very tired – or they can be
life-threatening, like tongue and throat swelling. I have pictures from reactions because I don’t really remember
them very well. So, it helps piece things
together for me. So, this was my very first intensive
care admission in 2014, when I’d ended up being transferred
to ICU for the first time. And it seems really strange,
looking at myself with hair now, because I am so used
to not having hair. I just kind of have to make
the bald-girl look work, really. I don’t have much choice. The mast activation syndrome
is an incredibly difficult condition to live with and it can be very
hard to cope with. Pretty much anything
can impact this condition, and sometimes,
my body is OK with it, and other times, it has a complete
meltdown over the slightest things. I’m not able to do most things
most 22-year-olds do, I can’t drink alcohol,
I can’t even tolerate it on my skin. We tend to only cook things
that she’s safe with. It limits the food
that my husband and I have. Obviously, try and clean
as much as possible to reduce the pollen in the house. I think mainly using antibacterial
wipes and sprays, making sure all surfaces
are cleaned down, especially with having the dogs,
as well. When Natasha’s in hospital
and she’s had a severe reaction, it’s very distressing to see her, but I don’t want her to see
my distress or upset because I don’t want her to feel
worried about me. You want to walk away
and not experience it. Um… But, obviously, you have to stay. Um, it is distressing. I’ve done gymnastics since the age
of eight, just recreationally. When I developed this condition, I wasn’t able to keep up
with mainstream gymnastics. Switching to disability
allows me to compete, and I can train at my own rate
rather than push myself. I think what I admire most about
Natasha is her positivity. I think it’s her personality
that gets her through everything, because she’s just a really bubbly
personality and really positive. In the gym, there are quite a lot
of barriers because other girls wear
aerosol body sprays, and there’s chalk, and there can be
dust around. When I exercise, because of the
way the mast cells affect my brain, I lose the feeling from my elbows
down and my knees down, so when I’m stood on a beam,
I can’t feel where my feet are, I can only look at the beam
to know where they are. But I’m quite persistent
and I’m quite stubborn and I love gymnastics so much and I
think, because I have that passion, that’s what gets me through
the tough days – to then be able to go out
and compete and show people that disabled people
can actually do things! I admire her determination and her ability to laugh
about everything, no matter how serious it is. I really don’t know where
she gets her strength from. I think she’d like
to inspire people if she can, to say to them, “You can
achieve things if you try.” These are the British medals, and then, when I get a gold,
I also get a trophy. That’s the UK Number One trophy, which I’ve won
for the last three years. And this is my Pride of Sport
trophy. In 2015, I was named the Disabled
Sportsperson of the Year, which just feels amazing
to be recognised as a disabled athlete nationally,
not just locally. I’ve always supported Tasha
doing her gymnastics because it’s something she’s always
loved and been passionate about. People always ask me, “How does it
work if you’re a gymnast “that’s allergic to exercise?” I think that’s kind of the point –
it doesn’t really work, which is why it’s so difficult
to train and work around it. It’s a huge barrier, but
with the support of my friends, family and coaches,
we work through it as best we can. I mean, I’m never going to be
the world’s greatest gymnast, but as long as I enjoy it and I can keep doing
what I’m doing, then I’m happy.