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!

Wheelchair Fund

wc01017_excel_allterrain_outdoor_selfpropelled_wheelchair (2)

This is the Excel All-Terrain Outdoor SP wheelchair

So I started a GoFundMe for a new wheelchair. I was nervous about doing so for a few reasons, not least of all: what if nobody cares? why should anyone give me money? I feel bad asking for things! Shouldn’t I just be grateful I have a wheelchair at all?

But then I went ahead and made the campaign anyway. Yes, I’m worried that I’m just one tiny person on the Internet, and not very well-known, even (especially?) within the chronic illness and disabled communities, so it would feel like shouting into the wind. Yes, I worried that I’ll be sitting here, afraid that I’ll be sitting here feeling fairly invisible and that those feelings of inadequacy will lead me down the familiar paths of yes, but shouldn’t I be grateful for my current wheelchair? and Isn’t it just vain or selfish to want a better wheelchair so I can do more things?

Well, in fact, no–to both.

Of course I am absurdly grateful for the wheelchair I have. It gave me a measure of my former capacity to live as I want back. But that’s all it gave me: a measureAdditionally, the wheelchair is old and rickety when sitting in it. It’s not comfortable, can exacerbate pain and is extremely limiting in where it can be wheeled/pushed. So yes, whilst it means that with this chair I can go out when before, I could only go out and stay in the car, it also means that I’m still unable to do even the most simple of things.

The current wheelchair I have is horribly unreliable on any terrain that isn’t a flat, even surface. And really, when was the last time you went into your local town or village (or any town or village!) and found a place where the pavement was flat, on each and every street? My town is relatively well-kept and even so, there are so many areas that I hate visiting because I know that I’ll be jostled and jolted and generally would rather avoid due to the wheelchair being ill-equipped.

Needless to say, many of the places I would love to visit are completely off the table for me. I don’t want to be unable to travel afield of home just because my wheelchair is inadequate. I feel trapped enough dealing with my social anxiety and the realities of disability and chronic illness, without also being limited by where I can go. I’ve been feeling very caged for a long time, with places like parks and new places (where I don’t know what the terrain is like, and therefore can’t anticipate how my wheelchair will handle it) completely inaccessible for me. It’s crushing to want to try to break out of my shell, finally, and to want to be at least a little adventurous, only to find that even now I feel that mentally I can, physically I still can’t.

It’s not fair that I can’t do even the simplest of things without the risk of exacerbated pain and even injury, just because my wheelchair is unsuitable. When I was given it through my doctor (which I’m still very grateful for, of course!), I was told it would potentially lessen my social anxieties by being a wheelchair that spoke of “an injury, such as a broken leg” instead of a disability.

Whilst I completely understood what my Dr was going for (and at the time, it was very relevant!), the reality is that I am disabledI’m not someone with an injury who needs the wheelchair for a brief period of time whilst an injury heals.

I am disabled and I need my wheelchair whenever I leave the house. And it’s starting to become more and more stressful because of how uncomfortable and unsuitable the wheelchair actually is. All I want is to be able to live as normally as possible, in relation to what that means for me. I want to be able to travel and explore cities and towns as much as I want to be able to go off road into parks and the countryside where I live.

Really, I just want as few limitations as possible. That’s all. I’m going to London in a few weeks to attend Nine Worlds Geekfest (which is my first convention since becoming disabled) and I’m nervous, because I don’t see my wheelchair holding up well in London, meaning I won’t be able to go to many of the places I’d like. The convention will likely be amazing, but I’ll still be very limited to just the hotel, which is kind of disheartening.

So if you feel you can help at all, please do! You’ll have my genuine and eternal gratitude for any help you can give–whether that’s money to help towards the chair itself, or simply sharing this post and/or RTing what I post on Twitter.

A new wheelchair will help change everything for me. Thanks for reading!

Fairy Loot Unboxing: May [High fantasy theme]

What is Fairy Loot
Well, it’s probably one of the most awesome and amazing things I’ve discovered recently. It is a book loot subscription box that focuses entirely on YA Fantasy. Which is, needless to say, absolutely perfect for me. (And my brother, with whom I share books and general fanboying about said books.)

fairylootmay#1It’s taken me forever to actually get around to doing this. Mostly because I’ve been stupid busy and pushing myself way, way too hard–but that’s pretty much what my life is made of and it’s not about to change. So… that’s a thing.

I saw that Fairy Loot was a thing by complete chance not that long ago (on Twitter, of course…) and we (my bookish brother and I, who share all things books) were too late to get the April box, so waited and snatched one as soon as we could in May. We were a little hesitant, knowing that most of the people who buy the Fairy Loot boxes are girls. I’m definitely not the most masculine of guys, but I was a little ummy and ahhhy about whether or not the subscription box was for me. I decided, “hey, so what if there are a few really feminine things in it? Give it a shot!” And so we split the box and went ahead with our first one in May. I was particularly into the High Fantasy theme and that was a big incentive.

I’m super glad we went for it, because it’s so good. Okay, there was like, a single thing that we didn’t want (not didn’t like, because it’s cool and all, it just doesn’t fit my brother’s wrist and it’s a bit… faffy and dainty for me, but hey, it looks nice enough and it’s easy enough to just customise it myself, so that’s fine) but that was literally it. Literally.

It was well worth getting the box and I’m ridiculously excited for June’s box, with the theme of Classic TwistNeedless to say, we’ve already split the sub for July–which has the incredible theme of Pirates and Power

fairylootmay2Plus, the boxes themselves are gorgeous. So, what exactly did I get in May’s High Fantasy Fairy Loot box?

  • Ruined, by Amy Tintera (which wasn’t actually released until 2nd June in the UK, so it was an ARC! It’s also hardcover and came with a signed bookplate to stick in, and a bookmark as swag as well as some gorgeous art from the book)
  • A cool abstracty art thing of Legolas, which is green and white and already hanging in the book nook space in the study
  • A random mini figurine from Game of Thones (I got Brienne, which is great, because she is awesome. Even though I don’t like GoT, the figures are cute so I didn’t mind at all.)
  • An exclusive dragon bracelet from My Clockwork Castle
  • A happy fanart chibi of Krem from Dragon Age: Inquisition, which is really, really cool, by Sparks Reactor (findable on Etsy and other places!)
  • A cute dragon mirror thing, from MelissaNettleshipwhich is stupidly useful for getting up close and applying eyeliner when you’re actually pretty terrible at applying even the simplest of gothy eye makeup as well as being able to apply concealer to hide awful spoonie fatigue, so hey, cute mirror!
  • fairylootmay4A really great letter from the author that made me super happy because she even mentioned boys who don’t mind being saved by princesses and that’s totally me OK so that was good

I loved the Fairy Loot box for May so much. I’m excited to receive the one for June shortly. And then July…

I’ve not read the book yet, but I can’t wait to start on it. I also can’t wait to amass a collection of Fairy Loot boxes, because they’re pretty awesome.

fairylootmay3I meant to do this unboxing post a gazillion years ago, but hey, better late than never. Hopefully for the next box, my brother and I will be starting our joint book vlog, so there’ll be a video unboxing as well. Hopefully.

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.

The Crown’s Game, by Evelyn Skye

Title: The Crown’s Game (The Crown’s Game #1)
Author: Evelyn Skye
Publisher: Balzer+Bray
Publication date: 17th May 2016 (US) 30th June 2016 (UK)
Rating: ★★★★★

CrownsGame hc cThe Crown’s Game, by Evelyn Skye, is another Truthwitch (by Susan Dennard). Not that they have anything at all in common—which they don’t, as it happens—but rather that this book is so hyped it’s unreal. And yet, as with Truthwitch: the hype is real.

There’s always a certain glee at reading a book that everyone is telling you you’re going to love, and then you actually do love. A tiny wee part of me was braced for disappointment. Not because anything about the book or the hype had put me off, but for two reasons: a) I’d rather be ready for the disappointment of a hyped book not quite hitting the spot and b) I always enter into books with a structured conflict (such as Vika and Nikolai’s duel to the death) with a thin veil of detachment, so I can figure out if it’s worth investing myself, when we’re pretty much told from the offset that someone is going to lose.

That veil did not last long.

Because this book is wonderful.

We’re introduced to an alternate Imperial Russia where magic is secret but real, and the time has come for Russia to once again appoint an Imperial Enchanter. Ordinarily, this is a simple task, with there being a single enchanter at any given time. Unfortunately for both Vika and Nikolai, who have been training their whole lives in preparation for being Imperial Enchanter to the Tsar, this time, things are a little different.

When there are two enchanters, the Crown’s Game must begin.

Vika has been raised on an island with her father, Sergei, and she knows nothing of the other enchanter out there. One day, she will be Imperial Enchanter and she will serve Russia, making her father proud. Nikolai, on the other hand, an orphan from the Kazakh Steppe who was bought from his village for a handful of livestock, has been raised and trained to be the best. Galina, Sergei’s sister, has been a ruthless mentor, giving nothing in the way of love or a comfortable life outside of dressing him for show and parading him as her dear little charity case.

Whilst Nikolai has been studying and mastering his magic through craft, engineering and more scientific ventures, Vika’s magic is all the wildness of natural energies and the very world around her. They are unalike in every way.

But it is time for the tsesarevich’s birthday, and to coincide with the beginning of the Game, both Vika and Nikolai are commanded to make their moves part of his birthday festivities. With no other guidelines given, the two enchanters are set against one another from the offset. And with their mentors whisked away to Siberia, they are left alone to participate in the Game.

Perhaps Nikolai stands a better chance of knowing how to make an impression, since he is best friends with the tsesarevich. But Pavel Alexandrovich Romanov knows nothing of his friend’s magic, or the Game, so even though they are close, things won’t be as simple as he might have hoped. In turn, Vika soon realises that she has caught the attention of Pasha, but with the tension of the Game and the growing fear for her life with each and every move of the Game, she might be too caught up in the magic to know how to use this to her advantage.

But in the end, it is the Tsar who will declare a winner, and he is stony and resolute. The Game will be played and an Imperial Enchanter will be appointed.

The Crown’s Game isn’t what it seems. It isn’t a bloodthirsty battle or a contest of egos or even wills. It’s, instead, a subtle and deep game that revolves entirely around the small cast and their feelings and relationships with one another. There are secrets and twists and revelations that, even if you cotton on a single page before the reveal, will make you go wide-eyed in surprise or clap about like a mad thing with glee (guilty—there might have been book-waggling/hugging). This book is a glorious feast for the senses, with delightful and extraordinary magic that exceeds both expectation and belief at every turn, making the reading of The Crown’s Game almost as exhilarating and wondrous as the Game played by Vika and Nikolai themselves.

The Crown’s Game is a stunning book with such heart and such strong characters, each in their own way. Vika is a fiery thing, whilst Nikolai has brooding, thoughtful edges. Pasha was a constant delight, even as he struggles to face up to the fact that one day he will be Tsar—and the realisation that his heart might be too soft for the role.

From the depth of the friendship between Pasha and Nikolai and the warmth of the relationship between Vika and Ludmila, this book is a pleasure to be immersed in, if only for the interactions between the characters and the way they shape and form the story. Yes, this is about magic and enchantments to make you beam with delight and gape with awe. Yes, this is about a deadly Game and a battle of wills. But it’s also so much more than that. The Crown’s Game is a story about discovery and about pushing the limits of who you are and how far you will go. It’s about finding just what it is that makes you, you, and a little bit of exploring the consequences of letting others make your decisions and sway your heart.

JBI 5 star chibiThis book isn’t just set in historic Russia—it takes you there. You feel it in the streets, in the palaces, in the people who populate the world. From the mounting tensions of the lower and working classes, to the discomfort of those in the nobility who see the dangerous ground upon which the Tsardom treads, this is a book that really feels authentic. Which, given Skye’s love for Russia, isn’t a surprise at all. She nailed it.

At the end of the day, The Crown’s Game is about imagination and finding those little pieces of yourself in order to move one step closer to completing the puzzle of just who you are. It’s gorgeous, it’s exciting and it’s thrilling. It’s pure, pure magic.

 

 

Health Update: Blood Test Results & X-Rays

13228058_849461041825680_672486022_n (2)So I’ve been freaking out all last week, knowing that Dr S was going to call. After the blood he took for the tests last week, he said that he would not call if there was nothing new showing in the same tests (plus some more) that I had done when I was first going through the diagnostic process of getting the fibromyalgia as a Thing on my file. He said he would call if there was something.

And I knew he was going to call. I guess I know my body, and so I know that over the past few years, things have been developing in new and different ways. Also, at the time, I barely even knew what chronic illness was, let alone that you could be disabled by it, and so we got the diagnosis of fibro very easily and, due to my severe social anxieties, it was a perfunctory appointment with a specialist (once) that means we probably didn’t discuss things in full and might have ended up with more tests and other avenues to go down. Oh well, that ship sailed and even if we were out at sea for a while, we’re back on another, better boat now.

So, he called my brother (my proxy for life, negl) and he lost the signal due to weird Vodafone blind spot juuuust left of his desk. He said call for a phone appointment in the voicemail, and my anxiety skyrocketed into space. When we made the phone appointment for Thursday at twelve, I knew we’d be out with a friend helping with Operation: Be Yourself, so, my anxiety shot into orbit.

Anyway, he called and there are things happening!

I need to see a rheumatologist again, since the level of this one thing that relates to inflammation in the body used to ring in at a bit of a wishy-washy (but still sliiiightly elevated) 11ish. It’s now 48. Forty-eight. The waiting list for a rheumatologist is as long as the Amazon river. But, because Dr S is fantastic, he looked into a few things and if I get x-rays done within two weeks, I have a referral to an Early Arthritis specialist.

So! I got the x-rays done on Friday, since it was easier than leaving it for days and days and letting me get more and more worked up over the idea. Getting the xr-ays done was kind of a nightmare, when I thought it would be easy. Turns out he wanted my hands, feet, and my most problematic knee done. The hands and feet cooperated, more or less (though holding my hands in the position, flat as possible, turned out to be far more uncomfortable than I’d expected), but it was the knee that decided to cause problems.

I had to hold my knee straight, or “normal”, I suppose. Apparently, that isn’t what my knee does naturally, so, correcting it to that “normal” or “resting” position was very hard, and it triggered such bad pain it’s not even funny. I had a straight on x-ray done and a side-on one done as well. Encouragingly, from what my brother saw of the knee (and the little “oh” of surprise from the nurse) there seems to be something weird going on with my patella. All I know is the pain lasted way, way, way into the evening and night and did not quit for the remainder of the day. I went to sleep with the same excruciating pain triggered by the x-ray.

Which wasn’t great, but hey. The x-rays are now done and will be sent to Dr S, who will do his thing and get me that referral. I am not looking forward to it at all. It means more peopling and I cannot people, so it will be anxiety through the roof, stress skyrocketing, etc, etc. All the good stuff.

Either way, all the fussy parts are done, and I suppose the x-ray experience informed me of two things: the way I hold my knee, which I hadn’t registered before and also, the fact that holding my knee in that position messes with pain around my patella, as well as what feels like nerve pain at the back of my knee. And at this stage, any info to pass on is a bonus.

On the plus side, the nurse was very cute.