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THE REALITY OF CHRONIC ILLNESS

Unless you have a chronic illness, it's hard to even imagine what living with one is like. I'll be honest, before I got diagnosed with PoTS and JHS, people living with chronic illnesses was something I never really thought about. And even when you do have one, there are so many forms of chronic illness, and varying levels of severity, that it's hard to relate even then.

And the posts or tweets that I do see on chronic illness are always so positive. "There's new research", or "look what I've managed to do despite my illness", or "I'm such a huge advocate for [insert chronic illness here]". And don't get me wrong, I adore those posts, and I regularly write them myself. But you never get to see the ugly side of chronic illness. The reality.

I only really post when I'm having good days, and people say how "well I look", or "how inspiring I am"; again, things I love and those comments mean the world to me. But if I posted what happened most days - would I still be "inspiring" then?

Some days I can't stand up and it's having to make the decision of my husband carrying me to the toilet and standing outside in case I pass out, or shuffling on my bum to the toilet and clutching the handles in my bathroom to break my fall if I pass out (it's happened!). No one talks about these moments. I'm still embarassed by these moments; but it's my life now and I shouldn't be.

Or having to sit in a lukewarm shower because the heat makes you pass out, and so does standing up. So you sit on the shower floor, with silent tears rolling down your cheeks praying it'll pass soon so you feel safe enough to leave the shower.

Or laying in bed listening to your stomach growl, but knowing even if you do make it to the kitchen without any symptoms, that grabbing anything more than a bag of crisps and a bottle of water is nigh on impossible without them starting.

Or catching a common cold and cough and your body shutting down completely. I've got a simple cough at the moment, and I've lost count of how many times I've passed out in the last few days alone.

Or laying in bed; completely still. Anxious to move in case your symptoms start. Is it really worth getting out of bed for? Your mind spiralling until it's just you and your thoughts alone for hours and hours.

Some parts of having PoTS and JHS are great; and I love talking about them. I love talking about what it's helped me achieve; the people I've met because of it; the sense of belonging and community; helping raise awareness. But talking about how lonely it can be; how difficult it can be; how debilitating it can be - those things are important too.

I'm coming up to my 8th year of first being diagnosed with a chronic illness. There are no cures or "magic pills" as I'm so often told. Yet I'm still not used to it. I don't think I'll ever be used to it. There always seems to be a new symptom; or a worsening one. But positive or negative - talking about it; in particular online, is therapeutic for me.

And I hope it helps someone out there feel less alone.



I'M STILL HERE.

I saw a tweet earlier today that asked what I'm most proud of in 2018. At the beginning of the year, I would have answered very differently to how I'm answering now. When the year started, everything for me was about being the best, and achieving the most. I wanted the most followers, the most engagements, the most books - and as the months wore on, that mentality slowly ground me down. It was an awful frame of mind to be in, and I reached the point where I just completely shut down.

I didn't want to blog. I didn't want to film. I hated social media. I thought everyone on social media hated me. So I just cut all ties to that community. For about 3 months, I barely posted or interacted - and it was the best thing I've ever done.

So what am I most proud of this year? Simply surviving.

Before I took my break, my mind and the environment I had created for myself was toxic. After my break, I realised that I had been putting too much pressure on myself to "succeed" and "do well". The number of followers I have; the number of tweets I receive, the number of engagements I achieve - they do not define my worth. And they do not define yours.

I realised I'd hit rock bottom when I contemplated self-harm because I didn't get a book that all my friends had been receiving. I read that sentence back and tears sting my eyes. Reading it back now, it feels like the most ridiculous and overdramatic reaction in the world - but at the time, it felt like the end of the world; that I wasn't good enough, and that I'd never be good enough - but I am good enough. And so are you.

I said no to almost everything for months, and it felt great. "No, I can't do that blog tour". "No, I can't review that book". "No, I can't do a video on that." And that is what has made saying yes to things now feel fresh, and exciting. I'm no longer dreading editing videos, or posting a blog - because I'm enjoying it again. It's not work. This is my hobby. And I needed to be reminded of that.

In the space of a year, I lost my job, had to stop my vocation because my health detoriorated so rapidly, created my own book subscription business, fought my 10 month appeal for PIP, supported my family through health issues; all whilst trying to maintain a blog and a YouTube. I've realised recently that I'm not a superhero. I can't do all those things without breaks, and self-care. And that is okay.

Whether I have 1 follower, or 10,000; 1 friend or 10 friends; I am still worthy of being here and enjoying my life. And that is why I'm proud of myself this year, and where I am at the moment. I was suicidal, and now I'm not.

Sometimes just surviving is the greatest achievement of them all.


EMILY SADOVNA'S GUIDE TO HALLOWEEN | THE HAUNTING OF VIOLET GRAY BLOG TOUR

Today is my stop on The Haunting of Violet Gray blog tour, and I have an exclusive Halloween Guide, written by the author, Emily Sadovna. Check out her fantastic guest post below.

"YOU CAN CHOOSE YOUR FRIENDS, BUT YOU CAN'T CHOOSE YOUR FAMILY".

Sharing blood and DNA is a funny thing. We are brought up to believe that this is what makes a family. You grow up around the saying, "you can choose your friends, but you can't choose your family". You try to make relationships with your blood relatives work far more than you do any other relationships, because these are the people "you're stuck with for life".

For over 20 years, I believed this. I believed I had to change my personality every weekend to fit in with the other half of my family. I believed I had to love this side of my family who mocked me for being sensitive; for having an unbreakable bond with my mum and sister that I could never have with them; for having anxiety and depression and putting down my "different" personality to those illnesses.

And then I finally understood. Whether you share blood with someone or not - if they don't accept you, they're not your family. In the physical sense of the word? Yes, they are. But the definition of a family to me is: people that make you feel like you're home. Safe, loved and respected.

Until I was 21, I had no real male presence in my life. Men were there, but they weren't dependable. And then I met my dad. Yes, I met my dad when I was 21. Not my biological father - but my dad. The man who spends hours listening to my problems, any time of day. The man who attends every hospital appointment without being asked. The man who drives hours to see me whenever I need him. The man who gives me his time, and realises that's the most priceless gift of all.

I hated Andy for months when he and my mum first became partners. I referred to him as Andy for the longest time. I put off meeting him for a while, because there was no way I could ever love this man for taking my mum away from me. I finally met him, and after he left for the first time - the dad seed was planted. This man was wonderful. He was kind, caring, supportive, attentive; this man would be my dad one day.

3 years on and here we are. I have the world's greatest mum and dad, and genetics don't come into it. It's taken me 24 years, but it turns out you don't have to feel trapped - you can choose your family.