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

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!