November Round-up #1: Medical

13228058_849461041825680_672486022_n (2)November’s been a bit of a weird month, but overall, a productive and positive one. After missing out on really celebrating Samhain on 31st October due to an appointment in London that was then subsequently cancelled (when I was already in London, and with no prior notice…), the month didn’t get off to the best of starts.

Traveling when disabled is never fun and never, ever easy. Let alone when going to London of all places, and not for leisure. It’s one thing to toddle to London for a convention (like Nine Worlds in August… which I realise I never actually posted about properly by writing up part two of the review—oops!) and another thing entirely to trek down for one day. For starters, staying in a hotel for one appointment that’s going to take maybe an hour tops feels a little like extortion, so, it was a there-and-back kind of trip. That would have been fine, had the appointment not been cancelled! Imagine turning up and them, NOPE, sorry, your appointment was cancelled and we didn’t even call, so sorry that you just came all the way here on a train and two taxis only to be told a clinician had called in sick. Yeah, it wasn’t pretty.

That whole thing messed me up pretty badly. It triggered a pain flare and I caught a cold, for starters. Moreover, it really upset me and drained all the spoons I would have needed to pace my month better. So it left me really struggling before the month even started. Fun.

The rescheduled appointment came through a week or so later, for the 1st December. I almost just rearranged it because, honestly, I just don’t have the spoons for this shit! But, I knew it would just be another source of anxiety, so I went ahead and accepted the appointment. Hopefully I can plan my energy better this time now I know that a day in London like that is utterly crushing. It’s also upsetting, you know? London is one of my favourite places and it’s now completely inaccessible for me. I can’t easily go to any of the places I want, having a wheelchair in London is so stressful and now I can’t just hop on the Tube, navigation is a nightmare. I’m usually pretty good at handling all the ways my life has been changed by my chronic illness/disability, but London’s still a sore topic that’s generally left ignored. I can’t fix it, can’t make London magically more accessible to me, and I’m not going to stop loving it any time soon, so really it’s best if we just don’t talk any more.

In other medical news, after being told I needed an intensive course of B12, followed by a course of folic acid (in that order, else nerve damage was a real risk), I needed to schedule in five intramuscular injections with the nurse. I don’t go to my surgery; I’m lucky enough that Dr S comes to see me (in his lunch break) and I can avoid the awkwardness and distress of having to go and be at the surgery. But not this time. Dr S couldn’t do these for me and after a bad experience with the district nurse’s attitude, it was easier for me to just suck it up and go. It wasn’t easy, but at least they’re done, and 3/5 times it was the Nice Nurse instead of the Kinda Bitchy Nurse. Unfortunately, the Nice Nurse hurt when she did the injections.

I wasn’t expecting anything to suddenly change or even improve through the B12 injections—and I wasn’t wrong. No increase in energy, no reduction in pain, no nothing. Sure, my body needs that stuff so that’s a positive, but that’s all that came of it. What I’d like to know more is why my B12 levels were so low in the first place and what we’re doing about tracking it. Buuuut, since it’s one of those things where I expect to have to insist to the Dr that the injections made no difference, it’s not something I’m looking forward to.

Honestly, I’m just really, really tired of trying to approach doctors from a million different angles to get them to listen. And after the rheumatologist said one thing in a letter, another in person and a third, different thing on the phone, it’s hard to know what’s going on or where to start.

The run-up to the holidays is always a mixture of “yay!” and “oh dear sweet gods I’m already exhausted”, but I think that this year I’ll have more of an idea how to pace myself and I know how to prioritise myself and self-care better than I did last year. Aka, last year was the last time I’ll bother celebrating Christmas for the benefit of others, and will just stick to Yule and cut down on any additional stress between then and New Year. It’s frustrating, really, that you only learn how to pace properly, by royally screwing up with pacing to begin with. Because why would this stuff make itself easy, huh?

I’m going to try get into the habit of doing both a monthly round up and a separate monthly round up, hoping that it’ll help me get my thoughts organised about medical stuff and track progress, since I’m pretty terrible at tracking time and sometimes, before I now it, I’ve been meaning to arrange an appointment with the doctor for three months when I think it’s only been a week. Mostly this is because it’s just so damn draining trying to communicate with doctors—especially after the colossal waste of time the rheumatologist proved to be, who then simply left me hanging without even a referral elsewhere or a letter back to Dr S that did any good.

The nicer, fluffier and altogether less irritating update for November will follow soon. (Probably.)

[Review] Timekeeper, by Tara Sim [Timekeeper #1]

Title: Timekeeper (Timekeeper #1)
Author: Tara Sim
Publisher: Sky Pony Press
Publication date: 8th November 2016
Rating: ★★★★★

25760792Timekeeper, by Tara Sim, is a clockworky, period fantasy-mystery-romance-everything that mixes an investigative ‘whodunit’ element with that of myth, magic and mayhem, with the added exploration of everything from parental relationships to what, exactly, being human might mean.

Set in an alternate Victorian England (yay) where time is quite literally a force of power and must be harnessed through clock towers in order to function correctly and keep life flowing and moving as it must, Sim’s debut novel is a brilliant example of making myth and mystery merge with the burgeoning industry associated with steam/clockpunk to create a story that is completely addictive and rich.

Time was once controlled by Chronos, but after his death, time needed new, mortal guardians to ensure that all flowed and ebbed according to its natural order: The Mechanics. They can sense time, touch it and feel its strands and fibres as if it were fabric. They are its guardians, attending to the maintenance of the clocks across the world.

Danny Hart is one such mechanic—the best in his class and a natural prodigy; the youngest mechanic in the union—like his father before him. But Danny is particularly gifted, able to not only repair the towers with ease and a delicate, careful hand, but to feel and touch the very fabric of time itself in a way far deeper than his peers. Danny understands time.

Which is why, when an accident traps his father in a Stopped town, now for three years and counting, Danny is certain that if he could just be a part of the controversial construction of the new tower in Malden, that he’ll be able to save his father.

But with fears that Danny might not be up to the task, following on accident that could have cost him his life, Danny’s requests to work on the tower are gently refused by the Lead Mechanic. Before the accident, before he drew the sympathetic stares of his colleagues, there would have been no question as to whether he was fit for the job or not. In order to get the assignment to Maldon, Danny needs to repair his reputation and prove that he’s fine after the accident.

So what if he has nightmares, still, and the presence of so much of the clockwork that exploded and scarred him makes him break out in sweats? He can handle it—he has to. With this in mind, Danny sets himself to any assignment he’s given with determination, desperate to help his father.

Things begin to change, however, when Danny takes a job in Enfield.

Clock spirits don’t exist—not really. Every mechanic knows the stories, but they’re a myth, a fiction. Only, Danny might be forced to change that assertion when he meets Colton, the clock spirit of the Enfield tower. Filled with deep loneliness, Enfield’s clock spirit begins finding any way he can to draw the mechanics—to draw Danny—to the town. So much for Danny’s focus on work and saving his father… Before long, the two are drawn together and Danny’s visits to the tower have less to do with the clock and more the boy who powers it.

But when a similar incident to the one that almost killed Danny occurs and there’s no visible culprit or motive, things begin to take a sinister turn. With clock towers being attacked, maybe it’s only a matter of time before another town is Stopped. And perhaps Danny won’t be so lucky a second time.

It soon becomes clear that Danny must solve the mystery before something unthinkable happens and before long, there’s more at stake than just Danny’s father. With the help of Colton, a rival mechanic, and his best friend, Danny delves headlong into untangling the distorted threads to find the truth about what really happened to him—and to his father.

Timekeeper is an expertly-written debut that is both thrilling and enchanting. Sim has a talent for crafting real, feeling characters and capturing the subtle and nuanced realities of every emotion from loneliness to grief, as well as weaving realistic and deep relationships between the characters. This is always something I hone in on immediately: parental relationships. Sim writes a seamless strained relationship between Danny and his mother, as well as his absent father. Parents suck sometimes—whatever the reason—and Danny’s mother is no different.

Obviously, Timekeeper features a m/m romance. Sound all the bells and alarms for a realistically-written gay romance, because by gods, they’re rare enough and rarer still written well, without essentially resembling the shounen-ai/yaoi fanfics written by teenage girls after binging Junjou Romantica for three weeks. This isn’t a gay romance written for girls (as so many are: fight me, go on, do it), it’s just a boy-meets-boy kind of story that gets it right, not agonising over any ridiculous notions such as how do I write a gay romance?! (spoiler: the same way you write any goddamn romance).

Additionally, this isn’t a story about Danny being gay—it’s a story where Danny just so happens to be into boy-shaped people. This fact alone would likely made me give the book five million stars and recommend it, even if I hadn’t personally liked it. When we have queer SFF on the regular that just so happens to feature queer characters without being a story that centres entirely on their queerness, then I’ll shut up about it. Until then, I’ll say: I do not want queer fiction; I want fiction that happens to be queer.

And that’s precisely what Timekeeper is.

Timekeeper is also a brilliant story that makes Sim look like she’s been published for years, not, in fact, her debut novel. The world is richly-plotted and expertly conveyed, mixing her unique magic and myth effortlessly with the more modern setting of a Victorian England only slightly different from our own. Her prose is deep and magical, adding a touch of wonder to the manner of setting that would usually present as eithleo-stickerset4er high-society propriety or the nitty-gritty of the streets. Timekeeper is enthralling and delightful and in one book, Sim managed to both write a story that finds a natural end, at the same time as setting the stage for subsequent books to follow.
Needless to say I am highly anticipating more from Sim—both in the Timekeeper world and in whichever additional worlds Sim decides to explore. This book was bloody brilliant. Buy it.

Bi Visibility Week – On Being Bi/Pan-(romantic)

bi-flagSo apparently being bisexual is frowned upon by many (ridiculously rude and shitty) people. Honestly, though, even having to type that is so ridiculous that I almost deleted it twice. Because it doesn’t seem like it should be true. But it is true–biphobia is a big thing. I’m lucky enough that,  in the circles I move in, I’m not subjected to it at all in my personal offline life (my friends are literally all varieties of queer; and this happened organically, without any of us knowing about one another’s queerness before we met, and without meeting in a specific queer community or setting), but I know from basically existing in the world and online that people get twitchy (and paranoid and downright nasty) about bisexuality. They get mean about bisexuality. Really mean.

Before we go any further, repeat after me: bisexuals are not confused or greedy or going through a phase. Bisexuality is a valid sexuality; we exist and we are here and there is no qualifying “test” or lifestyle checklist we have to complete.

And once again for those in the back: bisexuals are not confused or greedy or going through a phase.

OK, good.

Men who are bisexual are faking and are actually gay and women who are bisexual are straight and faking liking women (funny how the world revolves around we dudefolk, isn’t it? (Except that it’s not funny at all…)).Of course this is incorrect and also so incredibly damaging. To constantly invalidate someone’s sexual preference–especially when said sexuality can be easily erased or hidden (being “straight-passing” or “gay-passing” depending on relationship status)–is cruel and hurtful and damaging.

If you like one or more gender(s), then, congratulations! You’re bisexual. Bisexual guy married to a woman? Are you still bi? You betcha! Same if you’re a bisexual woman and married to a man. And this works for bisexual people who “pass as gay” by being in a relationship with people of their own gender. They’re all bisexual and they’re all valid.

Some people use pansexual synonymously with bisexual (though many don’t)–and I’m one of them. Whilst I don’t technically identify as bisexual (note the emphasis) or pansexual (again, emphasis), I do identify as panromantic.

Yep, that’s right: it’s the sexual part that becomes the deal-breaker. I am definitely attracted to pretty much any person of any gender whatsoever–therefore making me very bi/pan–but in my case, the attraction is as far as it goes. I’m asexual (there will be a post on this in the near future) and therefore would usually rather read a book or eat oatmeal or honestly just pet a cat instead of engaging in any business relating to the between-the-sheets activity. I’m just not interested.

But that doesn’t mean I’m not attracted to how people look or the notion of them as romantic possibilities. Asexual simply implies that, when it comes to the down-and-dirty, I don’t harbour any real interest or physical desire. It’s not simply a matter of choosing to abstain, but a literal physical, emotional and mental disinterest in the deed, generally speaking. Sure, many asexual people still have physical relations with their partners (whether to have kids, or simply because they enjoy–but do not feel pressured into–making their partners happy, or even because, however often they feel like it, they don’t mind having sex with people they’re in a stable relationship with), but the cinching point for many is that we are simply not that bothered by the idea. 

I could go on, but then I could also write whole essays about asexuality, and this is all about being bi this week. So…

Regardless of my asexuality, I consider myself bi/pan. Strictly speaking, I do prefer the term bi/panromantic, but most of the time our dialogue on sexuality doesn’t stretch to inclusion of these terms (or any terms that fall outside of allosexuality, for that matter) because there isn’t a widespread acknowledgement of the difference between physical sexual desire and the magnetic pull of one person’s heart towards another’s (purely romantic attraction; attraction to a person based on who they are as a soul, instead of a physical, sexual being).

Yes, this is crappy, but since my panromantic-ness isn’t a performance for anyone/thing, I’m perfectly comfortable broadly identifying as bi alongside asexual. I’m open about most things, so if people really get confused by the seeming contradiction of bisexual asexuality, they can always ask if it’s that big a deal!

I’ve always been comfortable in my happy little bi self. I’ve had relationships/harboured attraction towards people of quite literally every gender variant, including straight people, gay people and those that fall somewhere between. But it’s also not something I realised was a Thing until far later than I should have. With little to no bi rep in the media I grew up on, it’s no wonder that, years later, I’m looking back at what seemed to be peculiar crushes on other people of my own gender, wondering if what was really happening was my own burgeoning bisexuality.

There’s still so little representation of bisexual people in our media. I can likely name more gay characters than I can bisexual–which is a big problem. Gay rep is very important, yes, but bi rep deserves just as much attention. In a way, since it can be a complex issue, it arguably deserves more attention. Conveying a same-gender relationship is easy: boy meets boy, or girl meets girl. Easy. But a bisexual relationship, to be explored on the page as a sexuality, needs a little more, unless a character is constantly reaffirming their own preference. This is why we need #ownvoices authors telling our stories: I don’t think it would be possible for me to write something without a queer character, because it’s such an integral part of who I am, it comes so naturally to the characters I write.

But it is important to acknowledge bi characters when we see them, and to not fall into the systemic biphobic habits of labeling these characters as gay or straight depending on their current preference/history of relationships, and thereby denying them the deserved and valid identity of queer.

I did this recently, having lamented the lack of queer rep in one of my favourite series. I fell into the trap of taking away a character’s queerness by not considering their bisexuality as being “queer enough”. Which is really, really crappy of me, let’s me fair. Yet, this is the systemic bi-erasure hard at work, right there. I’m talking about Aedion Ashryver in Sarah J Maas’ Throne of Glass series, which now features a queer character as part of the main cast. Bisexuality is valid. Aedion Ashryver is valid.

Aedion is my current bookish crush. And he’s a great crush for me to have, as a bi guy, because he is also bisexual. It matters. His past relationship with a member of the Bane is important but in no way invalidates his current feelings towards a female character. Aedion wasn’t gay when he dated the soldier and he isn’t straight now he’s attracted to a woman. He is–just as he has always been–bisexual. Having a crush on a fellow bi hottie feels good, because there’s the notion that the character gets me, gets my sexuality. That’s really important.

I don’t have many bookish crushes (girl or guy), and perhaps my asexuality tempers any attraction based purely on how a character looks or presents, but I think it’s more that the characters I could crush on feel unattainable. With bisexuality so easily erased across the board, it’s easy to feel invalidated as a bisexual person, when the choice of crushes leans either towards gay imaginary romance or straight imaginary romance.

That’s not to say that bisexual people will always want to/need to date other bisexuals, but with this ingrained sense of biphobia, it’s little wonder that those who identify as bisexual will do so openly around only those they trust the most, or they may conceal that part of themselves altogether, lest they be judged for their preferences. The gay and straight communities are equally guilty of this treatment.

There are many married men and women in my circles who are bi, but rarely consider/announce themselves as queer, even though their letter (the B) is right there in the LGBT+ acronym. That’s hugely problematic.

In the same way that the L and G seem to come together and form one big gay supervillain, bent on stealing the focus and attention entirely for themselves, whilst the other letters are shoved into the background, taught to be grateful for whatever scraps of (often bad) representation they’re given, any focus on the gender elements of the queer/LGBTQIA spectrum are similarly often forgotten. Indeed, talk of “queer rep” is so often reduced to simply “gay rep”, which is telling in and of itself.

Queerness is about so much more than who you’re attracted to and shouldn’t be reduced to an overarching label of “GAY”. There’s a lot of work to do, but hey, hopefully with more attention on the important issues of queerness, through awareness periods such as Bi Visibility Week, maybe we’ll eventually gain some ground and open the dialogue all the wider for it.

And before I go, once again:

Bisexuality is valid. Bisexuality is valid. Bisexuality is valid. Bisexuality is valid. 

 

 

September Tarot Spread

I’ve always had a connection with tarot cards, which kind of figures, since I’m a practising witchy pagan. But in the last few years, as my life got rockier here and there and I lost myself a little in the chaos, I disconnected a little with these things, including the tarot cards. But, here I am!  Along with the intention of posting daily card readings to my Instagram, I’m going to post both my month ahead readings and my smaller week ahead spreads as well. Maybe they’ll help you like they help  me, or maybe they’ll pique your interest in learning more about tarot and modern witchcraft practises (which I intend to blog more about).

  • september-7th-2016The Devil
  • Son of Pentacles
  • Ace of Cups
  • Two of Swords
  • The Hanged Man
  • Ten of Pentacles

Oh, what a month ahead! Mercury’s retrograde definitely features in the energies and experiences for the month, but there is the potential to ride out whatever trials of heart and mind are introduced or exacerbated this month. Be ever mindful of the smiling, baiting Devil. He sees you and you see him – and oh, he knows it, too. Powered by the chaotic fluidity of the retrograde, this Devil will seek to lead you astray. But he is in direct opposition with the Son of Pentacles, who is set a about his course, trudging ahead with his determination to wherever he is headed.

Yet especially with the trickery of the Devil afoot this month, the Son’s dogged and stalwart approach is likely to lead straight into the goat’s smiling clutches, with our stoic Son too set to glance up and reassess his way. The Devil might be you – the personification of all the little brain gremlins you house and how they all lie to you every day. But instead of the goat, choose the clever perspective offered by the Hanged Man. The Bat knows its strengths and weaknesses and plays to them. It sees the situation the way it must and holds no illusions that it is upside down. Yet, this is because it is meant to be upside down. View a situation from the way you need to see it, not anyone else. Your perspective is what you need to stay the course through the trials of the Devil and lead to the waiting energies of the Ace and Ten.

It’s going to be a busy month, emotionally and spiritually, but there is a reward for all the chaos you’ll endure. The energy of the Ten is boundless yet calm, and pitted with both the Devil and the Hanged Man, it feels knowing, as if fully aware of what’s going on. And it is – let the calm fullness of the Ten keep the overflowing energy and emotions of the Ace in check, backed up by the determination of the Son to keep to your goals and see them through, without forgetting the perspective of the Hanged Man. If you do, the Two of Swords reminds us that you can block yourself by getting into a stalemate with the Devil and the overwhelming emotions of the Ace if you try to a battle too hard or in the wrong way. There’s a lot on the bat this month. Trust bat and keep those ten, whole Pentacles in sight as you channel the Son’s determination.

You’ve got this.

Nine Worlds Geekfest 2016: Part 1

This is part one of my Nine Worlds Geekfest write up, since my experience of any con or event will be be a two-fold thing: accessibility, and general enjoyment. Naturally, these two can heavily coincide, but since Nine Worlds was pretty amazing, with nothing of the former impacting the latter, I’m going to dedicate one whole post to the accessibility of it, since it deserves the notice. Seriously: the accessibility team and the work they did was out of this world. Big, enthusiastic “thumbs up” to the accessibility peeps. They nailed it.

14256347_926923737412743_526412203_nSo I’ve never been to a geek convention like Nine Worlds before. Sure, I’ve vaguely attended anime cons but honestly, they’re not even comparable. (The UK doesn’t really do great anime cons.)

I would have attended this year even if I’d not been aware of the communication system they have in place. But it certainly helped put my anxious mind at ease, knowing that I would, in theory, be able to go around with my big red badge of NOPE and remain off the radar for any well-meaning conversational types looking for a chat or even just a casual passing word.

If I’d only had the anxiety by itself to deal with then I’d have done far more than I did. As it happens, chronic illness doesn’t just go away because you’re trying to have a good time and step out of your comfort zone for once, so there were times I missed stuff because I wasn’t well enough.

Even before arriving at Nine Worlds, it felt different. I don’t have a lot of experience with things like this, but I could just tell that it was open and accessible and that I’d feel safe there being “different” (in my case, disabled, not NT and also queer). Even if you just take into account the fact that I’m horribly introvert and have massive social anxiety to deal with, Nine Worlds presents such a safe space,  by means of their communication system. Not only is the system of coloured badge overlays very simple, but it is also advertised: people can’t miss the fact that this exists. Yes, there was a single time where someone talked to me and I wasn’t happy about it, but, on the whole, the badge system is amazing and it made me feel safe.

It’s also worth adding that you can have pronouns added to a badge, to help with any awkward/upsetting situations that might arise. I had a standard badge without pronouns, but I assume that pronouns are simply written on the blank badge the same way names are (meaning you can have a different name on your badge to any other details you might have needed to give).

Nine Worlds works as hard as it can to be an accessible con, for both visible and invisible disabilities, as well as anything from deafness to sensory overload issues. It really shouldn’t be the case that I’m (in a good way!) singling out a convention or event to say “yes, they care about accessibility and safety”, but the Nine Worlds team really does give a damn. With closed sessions for both PoC and queer peeps, you really get the impression that they know what’s up with the world and with the geek community. They get that there’s work to be done, and they’re willing to do it. Hell, that in itself is enough to make me want to go again, even without the fact that it was also a really, really great convention.

As I said, I’ve not been to one before, so I can’t judge others (outside of the horror stories I see on social media), but there’s something that seems just so inclusive about Nine Worlds. From the accessible seating set aside at various intervals in panel rooms (that’s right – these spaces aren’t just at the front of the room, but spread out amidst the regular seating, too., just as the spaces reserved for wheelchairs are) to a quiet room and the teeny reminder on their accessible seating signs that not all disabilities are visible, Nine Worlds are seriously on point with getting this stuff right.

There was one lift that could have been too small for some wheelchairs, so they advertised this and set up special arrangements to help those whose chairs were too big get around. It’s difficult to think of just what else they could have done!

It’s hard to stress just how much of a difference that red badge made to me. Whilst it didn’t entirely solve my social anxiety issues (which are fairly complex and multi-layered, and I’ll likely cover them in another post soon), it helped immeasurably. Part of my anxiety is related to being seen and so obviously there’s nothing that anything short of a cloak of invisibility could do to help with that–but! That didn’t mean that the knowledge that nobody would talk to me didn’t help. No chance of chit-chat in the lifts; freedom to browse the Expo with nobody trying to hawk anything or start a conversation; no worry about people I know thinking “hey! That’s Leo!” and coming to say hello if I wasn’t ready. All these fears were immediately eliminated.

I can imagine for other people who struggle with social anxiety or peopling, that the idea of being able to wear a badge that keeps you “off limits” is just ridiculously reassuring. Imagine being able to toddle from your hotel room, down into the lift, wearing your big red badge of NOPE, knowing that you might be ferried down through hotel with nary a word spoken to your person, both as you make your way to the panel you’re attending, as well as during, after and for the rest of the convention, if you so wish. Anyone with a red badge is perfectly welcome to initiate conversations with anyone they feel comfortable, but there is absolutely no obligation and neither will there be the fear of being rude if you’re not able to talk or socialise. The badge does all that for you. It’s genius, really.

I’d say it’s worth expecting someone to accidentally speak to you whilst wearing the badge, but it’s difficult to say whether it will happen or not, since the circumstances were so very specific with me, and, though I’m still trying to decide if the person in question recognised me from social media or not, it wasn’t a conversation as much as a passing remark. It wasn’t great, but it didn’t do any harm overall (likely because the person may have realised and shuffled off after the fact, or, because it was intended as a passing remark in any case). Anyone who wants to put their faith in this badge system, can indeed do so. It worked and it felt safe. There’s not a lot more you can ask for, really.

 

 

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!