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.

This morning was hard

img_20160519_123929 (2)Today is a perfect example of what living with a disabling chronic illness is like. I now go to the gym 3-4 times a week (day on, day off, day on, etc) in order to try and get some control back. It’s painful, but it helps, physically and mentally. The gym days are easy: endorphins make me feel good, man, and I have more energy immediately afterwards, even if I am also exhausted. Oh, the logic of chronic illness. I’m always in more pain after the gym, but once I learned that life with chronic illness is all swings and roundabouts, you just… get on with things.

Today is an off day for the gym. I don’t like these. It’s harder to get up, because I’ve nothing solid and practical to get up for. I’m paying a subscription for the gym. I know what the gym feels like. Plus, if I don’t go to the gym, I will feel horrible and upset after, so, off I go. The mornings where I don’t head out, are the mornings where the pain and fatigue feel even more crushing and I’ll do anything to just crawl back to bed after breakfast. Anything to just get away from gravity and vertical existence and away, away, away to the soft, safe world of my bed.

Only… if I sleep too late (after 10am—thanks, body) then my chances of sleeping later that night will be greatly reduced. I sleep between 3-4.5 hours a night, so you can see how less sleep is not an appealing option. So, I dragged my sorry, aching butt up and out of bed this morning, struggled through eating breakfast with incredibly sore and painful hands, and managed to only go back to bed for half an hour, during which I didn’t sleep, but rather, rested with an audiobook.

Then, much to my own surprise, I got up, got vaguely dressed (noteworthy when such things are a massive drain on spoons) and even did a little makeup. Mostly just gothic eyes of doom, because I’m fed up of not feeling like myself, even at home. So, when I arrived upstairs, mostly dressed (Captain America loungepants count as real pants, okay) and not looking entirely horrific, I was already so tired it wasn’t even funny.

Less funny when today, being an off-gym day, is supposed to be a few hours of Japanese study. This is when it really begins to sink in that Spoonie accounting is so very cruel. Because I got dressed and took a little more care over my appearance, I found myself with very depleted spoons, even before I loaded up Wani Kani to do my massive bundle of kanji reviews.

I did them, made some ridiculous mistakes on items I already know, and thus demoted about a million items. Altogether, not a good start and it made me feel like a failure. By this point, I already knew that any chance of actually moving onto my textbooks was not going to happen. Great. Way to go, Leo. You messed up. Because I had the audacity to get dressed and try to feel better about myself, I hamstrung myself and screwed up my chances of studying much today. Fabulous. I spend the entirety of my afternoons writing, because that’s what I am. That’s my life.

So I moved onto a few other mostly-manageable tasks, trying to squeeze what time and productivity I could out of the morning’s study session. I use Memrise, went through two small reviews for two courses on there, and then wrote some kanji in a handwriting practise book. By then end of that, I just wanted to cry, because my hands hurt so much. I have an app on my phone for writing kanji, but… it’s not the same. I’m never going to genuinely learn to write these things if I’m never doing it on paper. Bad enough that, because I find that studying is affected by brain fog, I’ve not yet really got deep into my textbooks. It feels like I’m simply not good enough; that it will never be enough.

And Japanese is not the only language I want to learn. Not by half.

So I was upset this morning. Hell, I still am, only I know how to forgive myself. It doesn’t take away the fact that each and every day, I have to make a decision about what I’m okay to not get done, versus what I can let slip. The writing will always, always, always be non-negotiable.

The Japanese is way up on the list… but so is my self-esteem. And if that’s helped, even a little, by wearing Real Person clothes and a heavy sweep of black-as-you-soul eyeliner, then so be it.

I know I push myself hard—too hard. But… what else is there? This is me.

That’s all there is. Me and my ambition and drive and my dreams. Yes, I could benefit from a few days here and there where I just rest, but honestly? I don’t know how to do that. I bore very, very easily. Very easily. I don’t like TV, I don’t play video games and the more I read, the more I want to write. Sure, I’d be able to sit and read for a whole day, but you can bet that the following day, I’d be writing on my phone if my laptop wasn’t in reach or I couldn’t get to my desk.

But that doesn’t mean that being sick, being disabled, doesn’t suck ass. It does suck. It sucks so very fucking hard.

Mostly I get on…I don’t know. Something. Stubbornness, determination. Other things, too, probably. But mostly I think it’s just the fact that there quite literally is nothing else. I would have to fundamentally change parts of myself to become someone who goes easier on himself, someone who rests more and doesn’t end up tired to tears at least once a day. And I wouldn’t even know how to do that.

It felt horrible earlier, making all those mistakes and realising that because I’d chosen one task that uses spoons I’d have to sacrifice another. That’s hard. It sucks and it’s not fair and it’s hard.

But, I could spend my energy being upset with myself, being frustrated with the powerlessness to change any of these circumstances… or I can just take a deep breath, allow myself that single moment of sadness (because I deserve that; it’s mine and I am owed it by myself), before moving on.

It’s not a quick fix and no, it doesn’t take away the pain of it all. Physical or emotional. But it lets me keep moving, and I’ll take that.