I’m Meg, and I’m 17 years old. I love
acting, reading, art, textiles, tea, cosy jumpers, and my cat. I’ve always been
small. But once upon a time, I was tiny.
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| Me aged 7 (left) and younger sister Daisy |
I was born with a condition called Turner
Syndrome. This is a chromosome abnormality, which only affects girls. Two main
features of Turners is short stature and infertility. I took daily growth
hormone injections when I was younger to boost my height, which were a pain in
the bum - literally, until I learnt to do them myself in my legs. After 5 years,
I grew from 3ft 9 to 4ft 11 – one of my proudest achievements.
I was later also diagnosed with
hydrocephalus and idiopathic intracranial hypertension, a condition that causes
too much fluid on my brain, squashing it and giving me pretty much constant
headaches. To try and drain the fluid and stop the headaches, I had a shunt
fitted in 2011 . This is a tube from my brain to my stomach to drain some of the
fluid – my very own plumbing. And I occassionally become a real life teletubbie-
to monitor the condition I sometimes have had to have a bolt fitted onto my
head, with a small wire going into my brain, which is connected to a monitor.
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| First Shunt Surgery 2011 |
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ICP bolt - with my beautiful Mama
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Since then I’ve also been diagnosed with
P.O.T.S, a condition which affects my life in the way that I get very
lightheaded and dizzy when I stand up, as my heart rate increases pretty
dramatically. Treatment so far has been lots of fluid and salt – medically
advised to have lots of mcdonalds chips!
Being a teenager with chronic illnesses
means I live your life differently to most other people my age, but it
doesn’t mean I don’t live it to the full. I have good days, okay days, and bad
days, but I spend a lot of time resting at home. I used to thrive on being
busy, going everywhere and doing absolutely everything, however, with Doctors
recommendations, recently I’ve slowed my life down, but that doesn’t mean I’m
sitting alone in my room watching rubbish daytime tv every single day (although
I have watched more than my fair share of deal or no deal!). I have begun to
find my creative side, and really enjoy drawing, painting, sewing, knitting,
and making things, and have found its just as satisfying as going out. Taking
it easy means I can lay in bed on my bad days and knit, with a few new movies
and a cup of tea, or on good days I can sit downstairs and have friends over,
or go out shopping in my wheelchair for a few hours! Having multiple health
issues have given me an appreciation for life and has made me realise what’s
actually important to me.
The Turner Syndrome Support Society is a
vital support network for my family and I, offering friendship and
understanding. They hold open days and conferences, which mean we have the
opportunity to meet other families who are touched by the condition. Two years
ago, I was asked to become the teen representative for them, meaning I embody
every teenager with TS in England. It is an honour, and I decided to take this
as an opportunity to give something back to the society raising not only funds,
but awareness of this rare condition. My support system is vast, and their
willingness, enthusiasm and ideas have made all the difference. Every penny
raised for the society is much appreciated, if anybody wished to donate, my
justgiving page is justgiving.com/meg-cubitt. Thankyou!
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| Me and my wonderful Turner girlies |
This is not a story warranting sympathy,
but of optimism and hope. I hope you’ll
enjoy reading about my daily life, as I enjoy living it. <3
