Life in Leoland – The Reboot

2016-05-23 14.18.51So I’ve had this blog for a long time now, but between being diagnosed with chronic illnesses and becoming disabled, I ended up splitting myself between two blogs (Jet Black Ink here, and what was formerly The Secret Life of Fibro Boy). I did this for two reasons: 1) I felt completely out of touch with writing/reviewing, so didn’t want to/couldn’t talk about that and 2) I had the impression that I had to keep my chronic illness posts separate.

Now, I’m not actually terrible at blogging. I like writing, whether it’s conversational blather that nobody (bar me) cares about, reviews, musing, or serious talk about other things. But what I’m not great at, is separating content or keeping up with too many separate projects in different places. The attempt to keep the chronic illness posts away from Jet Black Ink probably resulted in this blog gathering a lot of dust and fading a little into the abyss. Of course, I managed to keep up with some reviews (mostly ARCs, for obvious reasons (mainly the crushing guilt of not reviewing them in a timely fashion, negl)) and so I didn’t completely stop posting, but I certainly wasn’t posting as I wanted to. I wasn’t really blogging.

But then on the other hand, I found that the way I was posting about my chronic illnesses and disability on The Secret Life of Fibro Boy actually started to distress me. Not only did I realise I was keeping these two areas of my life completely separate (which is so, so stupid of me: as if I can separate myself and what I love–writing, books, geeky, nerdy things–from the fact that I’m sick and disabled). This had a negative effect on me that I only noticed afterwards. I’d even separated my Twitter activity into @Leo_Cristea (Me) and @Fibro_Boy (My Illnesses). I was trying to be two different people. It… didn’t work. One of those accounts is now barren and bereft. Guess which one.

Originally I’d chosen “The Secret Life of Fibro Boy” to be a nod towards the fact that my illnesses are invisible, but before long, I think I realised it was more an expression of the fact that I thought I had to be secretive about my disabilities; that I couldn’t talk about those issues alongside the rest of me. That was a pretty damaging mentality.

That’s all out the window now: I’m going to blog every day throughout (Bl)August and aim for at least a weekly roundup of how things are kicking in Leoland thereafter. In the coming weeks I’ll be talking more concisely about chronic illness and Spoonie life, trying to give an insight into how to deal with it without losing yourself or the things you love.

New Wheelchair and Attempting #Blaugust

2016-06-19 20.09.11What better than a little incentive to start a) blogging more regularly and b) training myself out of thinking that each blog post I write needs to be five million words long and eligible for the Man Booker Prize?

Mostly I’ll just be blogging/reviewing as per usual, but I’m trying to get into the habit of more frequent posting about me and my life in general, relating to books, writing and disability. (Of course it remains to be seen if I’ll actually manage it,  but there we have it!)

But let’s start off with good news: I got my new wheelchair! After the very generous donations given through my GoFundMe whatsit, I got the pennies to buy myself a brand new wheelchair that is lighter, stronger (and therefore smoother and less wobbly) and comes with all-terrain mountain bike style wheels that promise to make parks and hills and all manner of previously-awkward terrain accessible again. I’ve only had the chance to use it a few times so far, but it’s so very different and immeasurably more comfortable than my old one. It’s light and feels less restrictive to sit in, which is definitely a bonus. It feels like there’s more me and less wheelchair, which is something I didn’t even know could be a thing.

I’m excited to take it with me to Nine Worlds Geek Fest next week (oh, gods, I’m not even close to being ready) and feel that if I am up to adventuring around London a little, I won’t need to worry about the terrain and bumpiness of unfamiliar and/or uneven streets.

I am incredibly grateful to anyone who donated, beyond words, in fact, since it’s always the worry that you’re asking for too much, isn’t it? Well, here I am with my new wheels and they’ve already started to make a noted difference to how my pain is managed when I’m sitting in it outside. I have high hopes for long durations spent in the ‘chair at Nine Worlds, where I’ll be in it far, far more than I usually am.

So, thank you again to anyone who donated or shared the GoFundMe link–you have my eternal gratitude and the promise that, should I ever actually regain my throne as the long-lost prince of the faerie kingdoms, I’ll send my house-cleaning legions of brownies your way.

And as for Blaugust? I’ve been meaning to blog more, so this seems a pretty good incentive to kick that frequency up a notch. The goal is to post more specifically about life in Leoland and navigating chronic illness and disability whilst also being an anxious creative who really, really sucks at one thing all spoonies need: rest!