Turner Syndrome Awareness Day

Turner Syndrome is a genetic chromosome abnormality affecting only females. Males are typically born with 46XY chromosomes, and females are usually born with 46XX chromosomes. Girls with Turners are born with 45XO chromosomes. We have one normal X chromosome, and the other is missing or partially deleted. It occurs in 1 in every 2500 live births, and there are still so many undiagnosed girls without the help and support they need. I was diagnosed with Turner Syndrome at the age of 9. It is a cradle to grave condition, meaning I was born with it, and will live with it for the rest of my life. To read my diagnosis journey in depth, check out my mums blog from the beginning! 

Conference 2014

The first sign of TS my mum noticed in me was my height. I was the same size as my sister, who is 5 years younger than me. I took daily injections to boost my height. I would've probably been between 4'3" - 4'5", but now, thanks to modern medicine, I stand at 4ft11!  I have a congenital heart defect called a bicuspid aeortic valve. This means I only have 2, instead of the usual 3 parts to the valves in the main part of the heart. Thankfully, it's not an issue that requires immediate surgery. Another sensitive topic TS girls deal with is infertility. This could be a whole other blogpost on its own, but I’ll briefly go over it for now. Most girls take oestrogen pills and are unable to naturally conceive. I am incredibly lucky in the fact I am the 1% of girls born with TS that are in fact fertile. When the time comes that I want to think about have children, I have the possibility of having my own eggs harvested and used in IVF treatment, regardless or not of whether I am the one to carry the child in pregnancy. If that doesn't fall through, there is always adoption. There are always options. 

Conference 2012

Anyone who has watched a film or even had a conversation with me knows my hearing is rubbish! Subtitles are always on the TV, and I cannot hear what you’re saying to me unless you stand right in front of me so I can lip-read you – a skill I learnt at a very young age. I can also fingerspell the alphabet if needs be!
I also have an underactive thyroid, a curved spine, hearing loss, and a characteristically turner face with droopy eyelids, low set ears, and lots of moles. As a child I was incredibly hyperactive and I never slept. I would constantly be 'running blind', I was, and still am, very impulsive and have no concept of danger. For example, at the age of 7 I wouldn't think twice about darting straight into a road full of traffic to get to the other side. I wouldn't pause and think about the cars or waiting for the traffic lights or other people, all I would think is 'I need to get to the other side as soon as possible.'
To all the mums and dads raising us Turner girls, you're doing an amazing job. And thankyou. We will go to sleep one day! We are all so lucky to have parents that constantly fight for us, and we are so grateful.

Conference 2011

I used to struggle with friendships as a child. Not because I was shy, I was definitely a very confident little girl, (you’d often find me performing songs by Steps or S Club 7 anywhere we went… restaurants, trains, outside peoples houses – the world was my stage!) however, I actually find it hard to interpret facial expressions and assess situations based on how other people are acting. I struggle to pick up on social cues sometimes; my observational skills are not exactly ‘on point’. And I would do anything to avoid confrontation or arguments, sometimes saying what I think people would want to hear, as opposed to the truth.
Change also makes me feel very anxious. Routine is very important to me, and I like to know what's happening well in advance. If something is thrown at me with no warning I feel very out of control and need time to prepare myself, although I try hard not to let it show. I also have no spacial awareness, meaning I walk into things and am just generally incredibly clumsy. We have no way of knowing whether some of these things are purely because of my TS, or whether they’re actually just ‘me’. Everyone is different, regardless of whether they are diagnosed with a condition or not, and mine is just one story in thousands.
I am incredibly lucky to be involved with the Turner Syndrome Support Society. The support and friendship I've received from them is invaluable, and from the second I walked through the door of my first conference in October 2006, they have become my second family. I have lifelong friends who are more like sisters to me, and my experiences have hopefully allowed me to be a source of support for some.

Conference 2013

The TSSS website also has pages of more information, support, and contact details, don’t be afraid to ask for help if needs be.

Turner Syndrome Support Society UK

Review: Where Rainbows End by Cecelia Ahern

Rosie and Alex have been best friends since childhood. Through puberty, and to the newfound independence of young adulthood, they stick together, sharing everything. Until Alex’s family move from Dublin to America – putting an ocean between the two. On the eve of Rosie’s departure to join him, she receives news that’ll change her life forever, and keeps her right where she is.

Bad luck, circumstances and misunderstandings keep them separated. Their bond keeps them close through the ups and downs, but neither of them know whether their friendship can actually survive the years, miles, and new relationships. As the book goes on, you understand that Alex and Rosie are completely and utterly meant to be together, and every missed opportunity makes you a little frustrated.  

This is worth 5 stars in my opinion, and I absolutely recommend it to everyone, no matter what style of novels you usually read.  Don’t let the length of the book put you off, I lost myself in it for two days straight. Written in the form of emails, letters, instant messages and texts, it’s not tiring to get through, and makes a refreshing change to the usual lengthy narrative prose of other novels.

This quote is one of my favourites.

When you are chronically ill, the one thing you have is time. Time to work on hobbies and skills you’d never usually cultivate, to read, to rest and to reflect. Prioritizing activities becomes so important; you can’t put valuable energy on things that are trivial or pointless. Rosie is in her fifties before she begins to seriously think the depth of her feelings for Alex.

It makes you think about how quickly life passes you, and how important it is to do what makes you happy. Take those chances, and make time in your life for what’s genuinely important. Give your sister a hug and make up with her. Spend more time loving what your body can do than hating what it looks like. Rest when you need to. Tick something off your bucket list. Be brave. You’re far more likely to regret the opportunities you don’t take rather than the ones you do.

It has also been adapted to film, under the title ‘Love, Rosie,’ and it’s one I could watch again and again! It is full of humour, makes you tear up, and you’re hanging on until the very last moment.  Let me know if you’ve read/are reading this book, I’d love to hear your opinions!

Coming Out.

 
This is a topic that I find harder to write about than my illness. Having details about your private life out there on the internet is certainly nerve wracking, but if just one person learns something, it'll be worth it. 

I have been in a long distance relationship with my best friend for nearly 6 months. Her name is Sophie, and we met in 2012 on the social media site, Tumblr. 

If I could do my 'coming out' again, I would. I kept my relationship a secret for a good two months. It wasn't because I thought my parents were going to kick me out the house as soon as I told them, (anyone who's met Mumma Cubitt knows just how accepting and incredible she is) and it wasn't because I was ashamed of being gay.

It was because I was nervous, and I was still trying to come to terms with my identity myself. It was a completely different fear than going into brain surgery. I had to deal with a completely different kind of acceptance than when I was diagnosed with Turner syndrome. 

I never wanted to do the whole 'coming out' speech. I didn't want to sit my family down and say 'I have feelings for people of the same gender.' I'd been bought up in such an accepting, diverse family environment that I just left it. I was waiting for the right time, which of course never came. I began to feel guilty, not because I was gay, but because I was being dishonest to the people I was closest to. It got to the point where my girlfriend was actually at my house and my parents figured out we were more than just friends, and that I had real genuine feelings for her. 

Dating with a chronic illness comes with its own set of challenges too, which I'll touch on in more detail later. 

If I could give one piece of advice to someone struggling with their sexuality, it would be to talk. Communicate.  Take it slow, and only you know when you're ready to tell people. But I can promise you, an honest life with a few accepting people is so much better than an anxious life, stuck in the closet, worrying about wherever someone or something's going to 'out' you. 

Also, please, please, please be the one to tell your parents. I made the mistake of not telling my mum face to face first, and I regret it. Even if you're not sure your parents will be completely accepting, hearing it from someone else won't help them come to terms with it in a positive way. 

If there's anyone struggling with their own identity, wanting to come out, or even just needing to talk, my email and Facebook are always open. There are also plenty of support available online. I promise you, you're not alone. 

A day in the life with a Chronic Illness

Disclamer - I am not looking for sympathy, and I am in no way saying 'look how awful my life is'. This is just an accurate representation of what an average day is like for me. I am in no way saying this is how everyone with any chronic illness feels, as every individual has a different experience. Some days are much better than this and some days are a lot, lot worse. Every day, every hour is different. To read more about my official diagnosis, check out my About Me page.

9-10am. You wake up feeling like you've been out drinking and partying all night. But you didn't even leave the house yesterday, and you've not had a sip of alcohol for months. Your head's pounding and you know you need water and painkillers, but you feel like your brain is going to explode if you even contemplate sitting up. But you force yourself to. If you go back to sleep and lay in too long, you'll just feel even worse.

You decide not to take strong painkillers. The thoughts of "addiction" and dependency enter your head, and there's a chance they might stop working so well if you take them too often. So you go without. But it puts you in a bad mood and you still have to take 8 other tablets anyway. 

Getting out of bed instantly sends your head spinning. You feel like all the bloods draining from your head. You can feel your pulse skyrocketing and if you try to walk, the room suddenly spins from underneath you and you grab onto the wall to stop from falling over. 

You feel too sick to eat, but you know you need food to line your stomach. You go downstairs and start making breakfast. Sitting down at the table, you feel an instant relief. You begin to eat even though every bite makes you feel more and more nauseous. You feel like you've already eaten ten meals this morning. Bending down to put it in the the dishwasher sends your head pounding, and you can barely hold a conversation with anyone. 

Washing is exhausting. As you walk past the bathroom you notice a bath already run. Thank god. You can sit down for a bit in it. At least there's ten/twenty minutes of relief. You contemplate sitting on the toilet seat whilst you brush your teeth so you don't have to stand.

Putting clothes on makes you feel dizzy. No makeup. And hair goes in a ponytail. There's no point forcing yourself to pick a fancy outfit and wasting makeup and spending an hour standing and doing your hair. Save that for when you're actually going somewhere. You're already exhausted.

11-12pm. You need a rest after this mornings activity. You sit on your bed and lay still for a while, and after a minute you finally feel your heart rate begin to slow. You watch some youtube videos, and start to plan your day. On a good day, you could be going to class, or going out for a little bit of shopping or lunch, but you know any plans for the day are out the window. Theres so much you could be doing, but you're not up to standing right now, never mind leaving the house.

You have to remember to focus on the things you can do. You try to reassure yourself it's okay to rest when you need to. 

1-2pm. You should probably have something else to eat. You psych yourself up again, and make your way back downstairs. You pick out some carby plain stuff, nothing that requires much preparation. You've figured out all sorts of tips and tricks to help save energy and stop you feeling worse than you already do. You then do a few chores, emptying the dishwasher, cleaning the bathroom, tidying your room. You zone off into your own little world.

You go back up to lay on your bed. You read for a bit, you plan a blogpost, you plan some art in your sketchbook. Your pain levels have gone up. Your art stuff sits on your desk, but you won't be up to painting unless you get some strong painkillers in you. It plays on your mind - do you just lay still and go without, or do you take them and attempt to do something? Finally, you give in. You know you'll feel a bit better once they're in your system anyway.

  

3pm. You have a good couple of hours. The pain subsides a little, the brain fog lifts and you manage to get an hour and a half of painting in. It brightens your mood considerably. With a bit more motivation you go downstairs. You lay on the sofa with your dog and read for a bit. You sometimes have dinner up in bed if you really feel rubbish, but you can manage sitting at the table for a bit today. Also, going up and down the stairs too many times will set your heart racing and will bring your headache back to that unbearable level again. You're cold, of course you forgot to bring a jumper down, and your body is terrible at regulating your temperature. 

7-8pm. You finally get ready for bed. Showering and brushing your teeth sends the pain levels up again, and the medication is already wearing off. You can't wait to get under the covers, warm up, take another 8 tablets, and watch some TV without having to move again. The absolute relief you feel as you lay flat again is wonderful. You feel like you've run a marathon as your body is throbbing and aching. But technically, you had a good day. 

And tomorrow, it starts all over again.  

Welcome back!

After a notoriously long break from blogging, I’ve decided to try and keep up with posting regularly. I'm planning to upload a post every Sunday, although of course, life is unpredictable and I never know how I’m going to feel on any given day. I can promise I will do my best though. My plan for this blog is to post my artwork, review books, and journal about my life. See my 'Artwork' tab for regular pictures of my latest work!

The last year has been an absolute rollercoaster. Healthwise, every day is different. We are still waiting to see a highly sought after specialist neurosurgeon, and I have a big decision to make. I could have surgery to tie off my shunt and stop it from functioning anymore. This would be experimental, to see if it'll help combat the debilitating symptoms I have right now. However, there is a risk my CSF (brain fluid) pressure will rise after the operation, and the effects from that could be damaging. Although what I have now is painful, there is no current risk to my eyesight. Having high pressure again would bring us back to how I was before my diagnosis of Idiopathic Intracranial Hypertension, five years ago. After years of being chronically ill, my condition is manageable, and I have the lifestyle and medications I need to feel the best I can, so I am leaning towards not upsetting the balance we already have.

A couple of months back I saw a fantastic cardiologist, and my POTS is being treated with a brand new drug called Ivabridine. It's finally helping to keep my heartrate down to a more manageable level. I still get dizzy and very lightheaded, but we think that's now more to do with my IIH now. My pulse rate stays at a far more sensible number now. Progress!

My achievements, although perhaps ‘untraditional’ for the average 19 year old, are more than I could ever have hoped for. I have found absolute joy and passion in my art, and my days have been filled with painting, drawing and weekly classes. I have had my artwork up in galleries. I have got through endless hospital procedures, operations and treatments. I have a close group of friends and family whom I love, and who love me back. And I have much happiness in my life. I am very lucky.

I am also planning on starting up a youtube vlogging channel, to give you all a bit more insight into what I get up to on a day to day basis! Keep an eye out for my first video! Any and all suggestions are more than welcome, whether thats to do with content, ideas for my channel name, or even tips and tricks, please send them my way!

Review: Since you’ve been Gone, by Morgan Matson

One summer, Emily’s best friend, Sloane, just disappears without a trace, leaving nothing behind besides a bucket list of 13 items for Emily to complete. She vows to cross every single item off… even the more terrifying ones… hoping it’ll lead her back to Sloane.

I raced through this book in two days. It’s a very easy, lovely read, and you’re desperate to get to the end and find out what happens. It’s a book of self-discovery, Emily trying to find her own identity without just being ‘Sloane’s best friend.’ The occasional flashbacks gave further insight into the girls’ friendship, which I loved. It gave them a history and made it a lot more believable.

Emily surprisingly gets help completing the list from the class president, assumed stereotypical nerdy guy, named Frank. There’s a slow building romance between them, without the usual ‘hot guy who knows all the moves and says the right things’.  During their time together, you see the stereotypes fall apart, and he gets his own wonderful identity too. Their summer is filled with adventures, some of which were a little too ‘perfectly coincidental’ as they work through the list, but it all slots together nicely.

Sloane is the idolized, confident and daring best friend, and you can feel Emily’s pain when she just disappears. But without her leaving, and the list, she would never have grown into her own person. I almost wish I had more from Sloane’s point of view, it would be fascinating to read her history and thoughts on the situation. Every single character, friends, parents, little brothers, were wonderfully developed and each had their own personality and history, which just enhanced the brilliance of the story.

I have only two qualms with this book. Firstly, the chapters were titled with the bucket list item she completes in that section. Personally, I found it spoilt the anticipation, as you already knew what was going to happen before you’d even started. Also, I found the ending, although satisfying, was a little unbelievable. I won’t spoil it, but I just thought it tied up just too neatly for my liking.

All in all, I really enjoyed it, an easy summer read I’d definitely recommend.

Review: Anna and the French Kiss, by Stephanie Perkins

Well. If you're looking for a romance novel, this is the best one I've read. Anna's been sent to the School of America in Paris by her father, and she's not best pleased. A million miles away from her home,  leaving behind her boyfriend, best friend, and family. She's thrust into independent life, in a country she knows nothing about, and never mind the fact she can't speak a word of French.
Enter the handsome Etienne St. Clare. English accent. American school. French name. With perfect hair, teeth, and eyes, he's intelligent and a hopeless romantic. Everything you'd want a boy to be.
Except he has a girlfriend. So he's out of the question. Anna's fallen for him, but will St. Clare help her up, and find her feet in a foreign country?

This book has everything I love in it. Boarding school, romance, minimal drama but enough to keep it interesting, and relatable characters. I instantly connected with Anna. She's an introvert and is very happy in her own company, and reacts to situations exactly how I would. She's not your typical teen, and is rather naive. She's not desperate to go out drinking every night, preferring a night alone at the cinema.
"Some people are finicky about going to the theater alone, but I'm not. Because when the lights go down, the only relationship left is between the movie and me."
Annas flaws are similar to my flaws, and it's refreshing to read about a main character who isn't perfect. Perkins actually remembers what it's like to be a teenager, instead hearing what adults 'think' goes on in a teenagers brain.

A recurring theme in this book is 'Home". Anna says "Is it possible for home to be a person, not a place?" I definitely think the answer to that is yes. Home, to me, is where my parents, younger sister and cat are. Whether thats Paris, Berlin, or England, it doesn't matter. Because if youre comfortable with the people, the surroundings don't matter. (Obviously it does help slightly if you're in a romantic part of Paris with a totally beautiful boy and have the world at your fingertips!)

I found St Clare ever so slightly unbelievable, but perhaps only because I've never met such an amorous guy in real life. I'm still waiting for my own Etienne. Very easy to read, wonderful realistic characters, and much recommended. I am definitely buying Stephanie Perkins second book, 'Lola and the Boy Next Door'.