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!