Welcome!

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.

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.

 

First Shunt Surgery 2011

ICP bolt - with my beautiful Mama

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!

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