Megphie journaling!

My girlfriend, Sophie and I spend a lot of our time together painting and crafting, so today I thought I'd share with you some of our creations! These pictures are from our Wreck this Journal and our AntiJournal. If you don't know what they are, they are books with written prompts that we can follow, and we have so much fun making these pages. 

Make a mess, clean it up!

Colour outside the lines

Fill this page with circles!

Throw something! A pencil, a ball dipped in paint!

Turn things on their head... cut up a photo and turn it into an abstract compostion. 

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As a quick PS, I started a youtube channel! I will be filming my life, vlog style, showing the world what it's like to live with a chronic illness. I'm thinking of specialising this blog as a place to photograph my creative endeavours, and my structured blogposts will simply take the form of videos! 

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 I documented my family holiday this year!

Burgh Island art!

Burgh Island Art!

This year, my family and I stayed for two weeks at Burgh Island Causeway, in Devon. I had the best time and I will be uploading my first YouTube video documenting it next Friday!

Over the last 3 years, I have painted the island, and it's been absolutely invaluable to see how I've developed as an artist. My skills, creativity and techniques have come on so much since my first pastel drawing in 2012. I'm excited to share with you the pieces I worked on whilst I was away!\

Sketchbook doodles!

I also worked on a more abstract piece, with loads of texture and a pastel colour palette, and I really like how it turned out!

7 things teenagers with a Chronic Illness don't want to hear

1. "You look so well!" or "You must be feeling better then!" We have to remember that this is usually intended as a compliment. Sometimes we will imagine a comment like this to mean 'I don't think you were really feeling that ill in the first place'. Just because we are out, smiling, laughing, or keeping busy, does not mean we feel good. It can be a little frustrating not showing on the outside how rubbish you feel on the inside.

2. "Oh my god you're eating McDonalds for the third time this week? Don't you worry about what you're putting into your body?" Or alternatively, "Oh my god you barely eat, you need a burger" Possibly well intended comments on eating and weight, unless coming from a parent or medical professional, will usually be dismissed. Regardless of whether the person is ill or not, a remark on someone's weight is unnecessary and can cause more harm than good. 

3. "Your symptoms are in your head.. it's all caused by stress, you just need to exercise more and see a therapist." Believe it or not, some doctors will actually say this to you. And there's nothing worse than constant pain not being believed.

4. "Oh! My great aunts nieces cousins sister had that, she went on a detox diet/threw out her microwave/moved to the countryside and she instantly went into remission!" Thankyou. But believe me, if there was an alternative therapy to brain surgeries, constant medication, and hospital appointments, we would do that. We have tried every 'cure', treatment and therapy available. Three times.

5. "Pleeeease please come to this concert/party/big social event, you can't just hide in your room forever." It's wonderful that you thought of me and want me to be involved, and I wish more than anything that I could go out and enjoy it with you. But it's hard enough for me to listen to my body and not overdo it as it is, I physically cannot go out, as much as I would love to be social. Trust me, I am the only one who knows how I am feeling.

6. "I could never take that many pills... relying on them is so bad for you. Don't you worry they'll change you? And you'll get addicted?" We need pain relief and medication in order to function. Daily pills keep us out of comas, prevent migraines, stop nausea, lower our heartrate and relieve pain along with a million other things. If we didn't take them all, we would see a serious and probably scary decline in our health.

7. "I wish I was able to lay in bed, watch TV and relax all day".  Life with a chronic illness isn't like one long sick day. It's okay when you have a bad cold and are off work for one day and spend it comfortably curled up watching movies or going out on some ferris bueller's day off type adventure. But the reality is, we often spend our days forcing ourselves to do things and attempting to function somewhat normally, even the minute task of showering is completely overwhelming sometimes. We find hobbies to fill the time, but we can't always enjoy them, simply because we're just so uncomfortable. See my day in the life post to see what an average day with chronic pain is like.

I want my blog to be an educational informative place, I am not 'getting at' anyone or trying to make others feel like they're walking on eggshells when talking to people with chronic pain. If we don't talk, people won't understand. 
To the chronically ill community, is there anything else people say to you that you wish they didnt?Let me know in the comments below. 

June Favourites

So, in preparation for starting my youtube channels, my blogposts are going to reflect what my 'structured' videos might be like.

So this week, I'm going to brush over my favourites from this month! It's a mixture of various aspects of my life, and I hope you enjoy!

Migraine Kool patches. 

These are my godsend and a daily essential. When my head is pounding and my forehead feels like it's burning up, these cooling gel strips are a brief instant relief. For anyone who suffers from migraines, regular headaches, or even IIH, I recommend them so much. Pick them up from boots, your local pharmacy, or order online!

Liquitex modelling paste.
As most of you know, I love art and painting, and this is a brilliant additive to any creative project. A wonderfully detailed texture paste, with endless uses - you can layer this on a canvas thickly, mix colour into it, and even paint over the top. I love how it looks.

Beauty - 

My single favourite makeup item from this month is the natural collection tinted moisturiser... It adds a small hint of colour and hydrates your face as well, brilliant for hot summer days when you're likely to sweat your face off! If an everyday makeup routine is something you'd like to see, let me know in the comments!

Books -
This months favourite was Dead Ends by Erin Lange.

Dane Washington and Billy D couldn't be more different. Dane is clever and popular, but he's also a violent rebel. Billy D has Down's Syndrome, plays by the rules and hangs out with teachers in his lunch break.

But Dane and Billy have more in common than they think - both their fathers are missing. Maybe they'll just have to suck up their differences and get on with helping each other find some answers.

This heartwarming book is about an unlikely friendship, and it deserves a five star review. The characters are so strongly portrayed, I loved Billy D. Incredibly high functioning, his Downs could easily have been written as as a huge challenge in his life, but I love that it wasn't. That he was still intelligent, but he was also different. It didn't make him less of a person, it was just him.

TV and film

The 100

Set in an apocalyptic future, a nuclear war has wiped out most of Earths population. The surviving remainder of humanity live on the Ark, a spaceship in orbit around what used to be Earth. Resources are scarce, so to control the population, any crime is punishable by death. Upon hearing the news that the Arks oxygen supplies are critically failing, 100 disposable teenage criminals awaiting trial are sent down to Earth in a last ditch attempt to save humanity.

If you haven't watched this yet, honestly, please check it out on 4OD. You wont regret it. 

The Longest Ride

Based on the Nicolas Sparks novel, Luke is a professional Bull Rider, and meets Sophia by chance. On their first date, they come across an older gentleman who has crashed his car and help rescue him. Sophia continuously visits the man she and Luke rescued, named Ira. He slowly tells her how he met his late wife, Ruth in 1940, and both couples stories interweave, connecting through generations, hardships, and love. 

Sophie and I were both in absolute tears watching this, it was incredible. I can't deny I am a sucker for Nicolas Sparks, no matter how cliched it is. 

And there we are! What have you been loving this month? Have I mentioned anything you absolutely love? I'd love to hear from you down below in the comments. 

10 things I wish you knew about my chronic illness.

1. I take approximately 24 tablets daily. This does not mean I am an addict. When you rely so heavily on medication, your mindset inadvertently changes. For example, an otherwise healthy person would think 'I have an awful headache... I'll take some painkillers and get rid of it." For a chronically ill person, it becomes, "I'm in pain, I'm always in pain, but am I in enough pain to warrant taking painkillers? How many tablets do I have left for the rest of the week in case it doesn't work and I waste it? What pain score am I at, and what corresponding strength of tablet/combination of tablets do I need?

2. Pain can make me incredibly moody. When it gets to the point that I cannot function or stand upright at all, I get snappy at everyone. It's because I'm frustrated with myself. There are many times where I need to lay in a quiet dark room by myself until the headache eases. To my patient family who put up with this, thankyou.

3. The hardest thing to accept about my reality is the fact I can't go out and be the busy social butterfly I desperately want to be. It's incredibly frustrating, and I feel so guilty every time I have to let people down and cancel plans yet again because I can't leave the house. I have to constantly remind myself that I'm not the unreliable one, my health is.

4. People think it's a luxury to be able to lay in bed and watch netflix all day everyday. Of course it is, I'm very lucky to have the resources available so I don't have to force myself to work everyday just so I can afford food or a roof over my head. But believe me, after 5 years, the novelty of not being able to leave your room quickly wears off.

5. Being in hospital is exhausting. Not just physically, but emotionally too. You're constantly fighting. Fighting for medication, for appointments, for someone to take you seriously.

6. The most powerful thing you can say to anybody with a chronic illness is 'I believe you'. Living with an invisible condition means there are usually no outwards signs of pain. It's so easy to put on a face of makeup, dose up on strong painkillers and say 'I'm fine!' Nobody wants to be that person constantly going on about how awful they feel. But sometimes it is nice for someone to acknowledge the pain we are actually in.

7. I would never have taken up art if my health had not deteriorated. I have found so much more joy and self satisfaction, from a hobby I would never have had the time or drive to pursue otherwise. I'm incredibly lucky that I have had the opportunity to cultivate this skill and begin my journey to being the next Van Gogh.

8. It was really hard to give up my independence. I am unable to drive, move out, work, go to university, and there are also days I need help to get dressed, to get to the bathroom and can't get around without someone pushing me in my wheelchair. It's a daily battle being honest with myself and putting my pride aside. It's hard to remember that people are more than willing to help, I just need to ask. Swallowing my stubbornness and being honest with myself is a lesson I'm still learning.

9. Giving up a passion because you can't physically do it anymore is heartbreaking. I miss acting. I miss being on that stage, I miss the community of close friends I used to have. I miss all the days and nights spent rehearsing, being fully immersed in theatre life. But I know there will be plenty of other ways I can get involved in the future. Maybe I need to find a role where I can just lay in bed and be still the whole time. Betty Parris reprise anyone?

10. The best piece of advice I have ever received was from my Mum. 'When life gives you every reason to be unhappy and miserable, show the world that you can deal with it. Make people wonder how you're still smiling.' Now this doesn't mean you have to fake being Pollyanna happy 24/7. It is healthy to feel negative feelings, but what's not healthy is allowing it to take over your life.

Love, anniversaries, and marriage equality!

Mine and Sophie's 6 month anniversary was this Friday. Six months. It feels like we got together yesterday but have lived a lifetime together all at once. 

Friday was also the day that same sex marriage was legalised in all 50 states.
This is such a huge step. Finally allowing gay couples to be married as opposed to being in a 'civil partnership' will have so many benefits.

Legally,

• Both partners will finally have parental responsibility over children.
• If a partner is in the hospital, their spouse can get information first.
• If one partner passes, bank accounts, property etc can officially be accessed by the partner.
• In a marriage, a paper certificate records the event.

Married couples can take a lot of these things for granted, but sadly in a civil partnership, these basic rights are inaccessible. Until now.

Actually having the status of being married has huge psychological benefits too. Demoting a couple to 'civil partners' can enhance the negative feelings and stigma attached to a 'different' relationship. Marriage is the joining of two people, and by not allowing particular people to unite in this way can cause huge strains in relationships and self esteem. Sending out the message that all love is love, no matter what genders involved, is a big step in making the world a more accepting place, and give the next generation a chance to be kinder and even more loving.

No relationship comes easy, whether you're the same sex or opposite sex, whether you live on the same side of the street, or the opposite side of the world. Add on not being able to get legally wed and it can take its toll on you. But now same sex couples can in many places. 

Now we can. That doesn't mean all our problems are solved however.

Factor in hundreds of miles distance, chronic illnesses, a job, the prejudices attached to being in a same sex relationship, and it can sometimes feel like the world is against us personally. Thank god for the internet, which allows Sophie and I to be so close when we're so far apart. Although at times it can feel a curse... it’s torture watching your significant other pour their heart out to you on a laptop screen and not even being able to hug them or just squeeze their hand in silent reassurance. Communication is so important, especially when you're in a long distance relationship.

But one day the distance will be closed. We won't need to countdown. We won't have to fit in a months worth of hugs and dates in just a weekend. We will have a space to call our own, and we will have a big white wedding (if I can make it out of bed for long enough.... and if Daisy doesn't take complete control and turn it into a big rainbow wedding!)

One day, we'll be able to walk down the street hand in hand and not have to worry about other peoples reactions. The prejudices and stereotypes will vanish. One day, things will be different.

One day.

#LoveWins

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