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.)

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!

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.

Wheelchairs, Tattoos and Disability: Issues with No Regrets

OK, so. Today was not a good day.

Let’s start at the beginning. Let’s start with my first tattoo, in 2013. I went to No Regrets in Cheltenham and got a tattoo fine and dandy. I was in a wheelchair, as I am 100% of the time when I go out of the house. They had a crappy ramp–but it was vaguely functional. I used the ramp and I went inside. Easy. Got tattooed. Left. Everyone was happy.

Now we come to December 2015. I decided to get another tattoo. I emailed to talk about the details, since it’s difficult for me to just up and go into town to do this stuff in store. So we did this via email. In this same initial email, I was told (I have the emails) that after the renovation “the front double doored access” would be available.

There is a rather hefty, sharp step from the pavement into the store. I was assured that there would be access at the front; I had stated I was in a wheelchair. See the problem? So, I went.

Lo and behold–there was no ramp! (A ramp they now deny ever having, I might add: but I will get back to this.) I was required to get out of the chair and climb up the step into the store. As it happened, I was more or less able to do this, that day, with help (provided by my brother). I wasn’t happy (why should I be?!), but I did it. Furthermore, the wheelchair barely fit down the corridor and I was required to get out of the wheelchair, yet again, to get into the “temporary” room.

This “temporary room” is the piercing room. The piercer doesn’t work on Mondays, so, this is the only day that anyone unable to use the stairs can actually go and get any work done. Because now, after the refit, all the tattoo rooms are upstairs and therefore inaccessible. So now we have: no ramp, and only one day a week where anyone who cannot manage steps can go and access this service. There were no apologies for this. Not even a token “sorry for the inconvenience” or a “sorry that we’re not accessible and you’re basically being made to feel like you don’t belong”. Nothing.

I’ve been needing to go and have the tattoo touched up (it’s very patchy) since December. I’ve had to reschedule once already, because they can only accommodate me one day a week and being chronically ill doesn’t work on a calendar, I’m sorry. (I’m not sorry.)

I had an appointment today at 5pm. By this point, No Regrets knows that I have a wheelchair, that I need accessibility, and that we’ve asked about a ramp before. We were promised that there would be a ramp “soon” and that it was being made.

Well, that turned out to be a lie, didn’t it? They “can’t afford a ramp”. We turned up today, in the cold and wind, and opened the doors, asked for the ramp and were told that they didn’t have one. At this point my brother went in to talk about this, at which point he was point-blank told that they had never had a rampHint: They have had a ramp. 

I was expected to get out of the chair, or, I presume, since the assistants flapped around vaguely saying they would “go get help”*, to have someone hoist my wheelchair up the step and inside the shop. Excuse you. I am not an inanimate object to be lifted by inexperienced and unqualified persons whom I do not know. Today I could not safely get out of the wheelchair. I would not get out. So, guess who had to reschedule his tattoo touch-up, again? Yup. This guy.

Never mind the fact that next time, I will be expected to get out of the wheelchair againWhether I am able to or not, I will be expected to do so. So what about those who literally cannot get out of their wheelchairs?

It’s not good enough. No Regrets were prepared and informed: they know about my wheelchair and my accessibility needs. All I can gather is they literally do not give a shit. And going as far as to call my brother a liar about the mysterious ramp? Excuse you.

So the tattoo still needs touching up. It’s still a mess and I’m still stuck having just one option of when I can go (why, exactly, can’t I be booked into a slot that uses the piercing studio on any other day?). And still stuck being expected to get out of my wheelchair and do things to make able peoples’ lives easier.

 

*Which seemed to equate to wandering around aimlessly, not really trying to solve any problem or communicate with us what was happening at all. And there I was, out in the cold and wind, getting cold and risking more pain through tension and anxiety. Mhmm.

 

Give Me Diversity Or Give Me– No, just give me diversity.

hhhThe thing about getting what you want is that you then get used to getting what you want. And when what you want is diversity, you start to get very demanding. And damn straight, you should. When I read a book now I refuse to accept the bare minimum. Say I’m standing in a bookstore (okay, I’m more likely adding books to my Goodreads or browsing Amazon because shops are out and out is hard—but it’s far less aesthetically-pleasing imagining me sitting in my Ravenclaw hoodie and slurping green tea as I scroll down a billion pages, so we’ll go with the bookstore) and there are, as is often the case with bookstores, lots of really awesome-looking books, all ready and waiting for me to spend my pennies and figure out where the hell to shelve them on our overflowing bookshelves. Say that there are two that catch my eye. And say that one of them has LGBT characters—and the other doesn’t.

Welp, we know which I’m going to buy, don’t we?

I’m done reading a balance of 90% cis-het romance and only receiving 10% diverse romance. Plain fed up. So there’s a stunning romance in this book—well, good for you! But is it going to be any different from the last cis-het romance I read? Eh, probably not. Maybe it’s a fantastic love story… maybe it will totally float my boat. But listen, the one next to it? Well, that’s got a girl who also likes girls! So yes, I’ll be reading that one. Maybe I’ll get around to the other, but it won’t be a priority unless there’s something else in it that reflects the world around me accurately, one way or another.

And okay, so maybe both romances are cis-het—but oh, this one features an inter-racial couple! Yes! Take my money, because it’s already bought. I’m also sick of white cis-het romances. Yes, yes, they exist—of course they do!—but here’s the thing: so does everything else. I know gay, trans, bi, genderfluid and nonbinary people, for gods’ sake. These people also happen to have hearts and feelings and emotions and happen to fall the hell in love.

There are entire galaxies filled with the love stories of white, straight, cis people. Whole planets could be formed from the words written that feature pretty blonde girls with blue eyes hooking up with Mr-dark-hair-and-dark-eyes. And a thousand snowy landscapes could be formed from the stories of white girls and guys finding love and making out.

I don’t want such a whitewashed, heteronormative library. A lot of the YA I read now is very diverse, whether racially or in regards to sexuality and LGBT representation. Which is great, because that makes me feel represented. Sure, there are cis-het couples in the stuff I read. I read an entire four-book series (The Wolves of Mercy Falls) recently that was all white kids making heart eyes at one another. The thing here is, the diversity was found elsewhere. I want diversity of issues as well; I want realism. Teens who do drugs and have sex and who are suicidal and depressed and have friends who are straight-edge Buddhists and cousins who are socially and generally anxious (because I do think issues such as addressed mental illness and disability are diverse representation). I want parents who are shit and kids who do not stand for it. I want the world we live in reflected through these people. I want boys who cry and like clothes and girls who wear short skirts because they want to and it’s their body and who also program with code and like beer. I want characters with diverse sexualities who are not stereotypes. I don’t want to read a thousand camp gay guys who z-snap everything. I want Ronan Lynches and Ben Evanses and Dave from Holly Black’s Modern Faerie Tales.

I want girls who kiss girls and guys who kiss guys and bisexuals who kiss whomever the hell they want. And I’m done being surprised when I find sexuality represented. 20140523_163109I want representation as-is. I want feminism to reign true and destroy the toxic masculinity that says I can’t wear foundation to cover tired skin without being gay and effeminate for doing so. I want gender-confused characters and guys who draw and paint and wear their hair long instead of having big muscles and football practise at the weekends.

And I want these characters to suffer real issues, without these issues being the entire basis of their story. I don’t want these diverse characters to be defined by the issues they face. Someone is gay and gets slurred or bullied—okay, but make it subtle, make it only a part of the background narrative. I want racism to be a thing at school because it is a thing at school—but don’t make their entire world and narrative revolve around it. Or make it a huge thing and commit to it. Do the thing. Reflect real life. I just want life. Characters who are biracial; characters who hook up with someone outside their own race, their own religion, their own species (what? Elves and faeries are species).

Just, quit with the normality. I’m so done. I’m done with sexism and I’m done with whitewashing and the en-straightening of everything and everyone. There are reasons I read the books I do right now—because they’re amazing and they touch me. They represent all the different parts of me, either directly in regards to sexuality, or by reflecting the openness of my opinions and acceptance of everything and anything regarding colour and religion and race and whatever the hell else. I want these detailed and realistic worlds to be real and true and to feel legitimate.

lgbt_rainbow_flag_button-p145745166131116729z745k_400Not everyone is gay, and that’s fine. So give a straight protagonist people in their immediate circle who are gay. Have a protagonist who is actively bisexual and have them check out the opposite sex. A remark; a comment. Something! It’s not that hard to start reflecting the world around us. Every time a writer assigns a character a skin colour, a religion, a sexuality, they’re making a choice. And if it’s always straight and white and cis and binary, then that’s because the writer has chosen all of the above.

Of course books with straight and white and cis and binary characters will exist—as well they would/should—but there are ways of making these stories varied and diverse and reflective of real life in ways that I still classify as “diverse”, even if not in the immediately assumed sense of sexuality, gender and colour-of-skin or religion. Depression and anxiety and illness and disability and a million other things besides; these are all things that are so common in our daily, real lives, but are so underrepresented in books. People have feelings and issues and problems! Eventually, characters who are just normal and plain and carbon copies of each and every one of their predecessors will begin to read as false. They are false! They will begin to stand out as being lacking and dull and made entirely of cardboard. I don’t want cardboard. I want flesh and blood and bone.

People are awesome. So write awesome people. I want to be able to open a book and find myself in there, somehow, somewhere.

And I want to feel comfortable writing these stories myself. I remember once telling my brother that he maybe shouldn’t write gay characters into his dissertation, because the professor wouldn’t “get them”. And sure enough—he didn’t get them. And it’s not like we’re talking about the goddamn seventies or something. We’re talking the very recent now. That’s sad, the fact that I told him to change the sexualities of his characters, or to simply not write the romance into the book, because people might not “get” them. I was once discouraged from writing a guy wearing goth makeup because it was “weird” and “vain” (no, I don’t get that one, either). I’m so done with sitting here, second-guessing if people will “get” my genderfluid faerie character and if their romance with a guy will read as weird. Spoiler: it won’t. Sometimes Lilley is a girl; sometimes Lilley is Thorn and Thorn is a guy. It’s that simple. And Lilley/Thorn hook up with Feliks and Feliks is okay with this, guy or girl.

It is that simple.

Except that it still really, really isn’t, is it?

We’re still sitting here half disguising gay romances and non-cis genders between the lines of our blurbs and synopses, just in case diversity makes them somehow unsellable and unmarketable. We’re nowhere near where we should be in twenty-sodding-fifteen. I’m tired of whitewashed, straight, binary, sexist attitudes keeping the stories I really want to be reading out of my hands. And mostly it is YA leading the way with diversity—which is probably why it’s what I read the most. The regular fantasy I do read, I’m very picky with, and aside from a handful of well-loved authors, I’m getting very bored with the rest. Diversity, realism, representation—or gtfo.

But You Don’t Act Sick

Personally, I’ve never experienced the “but you don’t look sick” thing that I know a lot of spoonies go through. This is generally because I have a pretty good support network. However, arguably, it doesn’t matter if people don’t say it, if they react to you as though you are well. If you neither look nor act sick, they treat you as though everything in normal, when it really isn’t. It’s an awkward situation, the not knowing how to be sick; how to act, what to do, what not to do. Because it then makes it awkward for people to know how to act with you, how to be with you.

Here's a cute cat because it is both cute and a cat.

Here’s a cute cat because it is both cute and a cat.

Sometimes I think I’ve got this. Sometimes I feel like I’m the most positive person I know; that I take rough with smooth and find a way of dealing with everything that chronic illness and disability throws at me. But then when I’m here, in bed, feeling horrific and drained and frustrated, it feels that the rest of the time I’m just being blasé. I’m never prepared for the switch in gear that occurs before and around a flare. Never. I should be; I expect flares, I know they’re coming. Still. It always floors me when suddenly the little things begin to slip. First, I get less sleep. Then, I can’t get up at the usual time to eat breakfast. And finally I start sleeping more in a morning. When you add all these things together—things that might seem small and insignificant—I start to slip a little. I need to find a way of not being utterly crushed whenever I can’t maintain my own baseline of normal. It isn’t what someone healthy calls normal. Well, it actually probably is, and I do it anyway, and maybe that’s a contribution to how often I flare. If you compare my day with those of people I know, mine shapes up as being busier—and that’s not even with adjustments for my illness. Nobody I know works full time. But…Actually I kind of do? I get up and eat breakfast and I go straight to my desk, where I will be, studying or working on writing or something related to writing all day. Until between five and six where I pull away. All day. Absolutely all day, every day. Most of the time I’m not dressed and a lot of the time I don’t make meals for myself because that would be a strain on my spoons. So there I am, all day at my desk. I can only even manage this because I don’t have to get dressed or go out and even if I get very little done due to pain and fatigue, it’s OK because it’s not a job and nobody can fire me or say I’m doing well enough.

And there are some days where I change up my desk for bed, where I sit in bed on my laptop all day, doing the same work as I would be at my desk. I’m well aware I push myself hard. I can do so only within the narrowest of margins, so I do it. Probably too much. There are certain things I don’t do as often as I might, if I didn’t push myself so hard. Like socialising. It is easily one of the most exhausting things in my life, to socialise. I am literally the definition of an introvert. I find spending time with people quite contrary to my interests most of the time. When I’m at home, I can write and play the games I like and read and play one-to-one DnD-esque games with my brother. I can do none of these things when I’m not. And then there’s the fact that I always do too much when people are here.

I’ll make food. I’ll offer to do X or Y or Z and then remind myself later that I am chronically ill and that oh, Leo, why did you say you’d do that? My mind works in ideals sometimes, forming the things I say and want based entirely around not being sick or not being socially anxious.

“I’ll go to this event! Yes!” / “I’ll do all the research and groundwork to help you with X!”

Way to go, Leo, well done in opening yourself to a world of guilt. Because you’re not going to go to the event because you’re terrified and you’re not going to have the energy or time to research mundane things that any idiot could find if they just Googled! I only even offer in the first place because I just know that if I don’t, it won’t get done. And I want it done for them so they can be happier, better—whatever it is they want. Unfortunately, though, the role of a life-coach is exhausting, especially when you’re not actually a life-coach and you’re not being paid. It’s hard to stop, though. Very hard. It’s just what I do. I make solutions happen. I tell people what I know they need to hear, what they deserve to hear from a friend.

I have a weird relationship with how I see my illness and how I think other people see my illness. Sometimes I genuinely think people in my life forget how bad I am or forget what I’m living with, based on what they see of me. It’s further than the ‘but you don’t look sick’; it’s ‘but you don’t act sick’. And oh, sure, people don’t see me act sick—but that’s because of the inordinate amount of spoons I use to function when people are here. I don’t know how to stop that. It’s not exactly their fault. It’s more of a joint responsibility. Mine, too.

If you’re in a wheelchair, people get that you have limited reach, that even if something is close, you might not be OK to stretch and reach for it. If your arm is broken, people pass you things. People respond to what they see rather than responding with an education and an awareness. And I just can’t ask. I can’t.

I never feel embarrassed or guilty for being sick, ever. Yet around my friends, I’ll stretch and reach and bend and stand and cook and offer all kinds of things, because I… I’m not sure. Probably because in the beginning I wasn’t treated as though I was sick. Because I didn’t really know I was. I didn’t know chronic illness existed. So the mentality never changed. Because my being chronically ill as a concept just sort of formed and tiptoed into existence. It was never a revelation, never something that changed.

I’m not very functional through the pain. The only reason I manage so well is my brother. I need lots of help, lots of little things here and there. And for some reason, I don’t ask for them when we have friends here. I’m too awkward and embarrassed and I don’t even know, to act as I normally do.

It’s not the same with everyone in all situations. Things are easier with fewer people. Things are, depending on me, mostly normal with our best friend. But I know if I met people I talk with on Twitter and Facebook, people who know I’m sick, I would act normal and downplay how bad I am. Slightly ridiculous as I’d likely be there in a wheelchair, but there we have it.

Needing so many tiny, seemingly easy things done for me makes me feel lazy and I don’t know why. Nobody has ever called me lazy in my life. I’m the opposite of lazy. I’m a doer. I do things. I used to tidy rooms for fun. I’m not lazy. But there’s this ridiculous fear of being seen that way. And I don’t get it. My friends have never treated me this way. Never.

I don’t get a lot of support or acknowledgement from my mum, but then we have a strained relationship and she is like an alien to me.

Here is another cat because it is cute and a cat.

Here is another cat because it is cute and a cat.

Sometimes I open my Fibro-Boy twitter and stare at the screen, not knowing what to say or post. Most people on my time line complain and vent (and that’s absolutely fine) but I just can’t. I don’t want to vent. I don’t to scream into the void. I want people to listen, to ask, to talk to me. I don’t need to vent, I need to communicate. So I don’t tweet much at the moment from there. It just feels so pointless. I guess I want my illness acknowledged more. Sometimes I don’t think people mean to, but it just happens, but an invisible illness is so easily forgotten. People trust their eyes and believe that which they see. They look at purple and see purple, even though they’re well aware that inside that splash of purple is a convergence of blue and red. Depending on the shade of purple, the red stands out more, and sometimes the blue. Sometimes the hue is so true that all you can see and perceive is the purple, as if it exists in and of itself with no further contribution. But, that colour is still, ultimately, red and blue. There’s a little irony here, in that purple is the colour for fibro and other chronic illnesses.

There’s this difficult situation where I want people to take care of me more, but I don’t know what I want or need and even if they tried I’d be just as likely to brush them aside. I am only good at accepting spontaneous care and attention. If it seems incited by something, then my barriers shoot up and you’re left dealing with a wall. I’m not sure why… it just happens. It’s as if I want everyone around me to be a goddamn magician. And yet, sometimes I feel like I’m a goddamn magician, so why can’t I be given the same? And here we come right back around to the “I don’t even know what I need or want” part. That’s the complete truth. I don’t know what I want, what I need.

A lot of it hinges with the communication part. But, I can’t reach out to people to talk. Honestly, it’s not what any of us do. Of all the people I know, nobody comes to me and says “wow, I feel like shit and have a lot of my mind” and say they need to talk. Nobody. And trust me, I talk to all my friends. Talk. Capitalised. So that’s why I don’t just hit up a friend and launch into a tentative “Hey :(” and hope against hope that they’ll ask what’s up and give an offer of someone to talk to. I don’t think I’d be able to stop the “yes, it’s fine, it’s fine!” part of me from taking over, anyway. It always seems to worm its way in there. It’s like I don’t know how to accept…what? Condolences on being sick? Reassuring words that it will be fine when it won’t but it will anyway? What are people supposed to say?

I don’t want to hear “this sucks for you”. I know it sucks for me, but I also don’t want sympathy. I don’t need it. Yes, it sucks ass. Yes, it’s hard. And… so… what? What difference does having people around me saying that make? So it’s evident that I don’t need that. So, what do I need?

Well I haven’t the foggiest. I want to know how to act whilst being sick (so, all the time, then) so that people have a set thing, a base perception they get to work off of. Most of it comes down to me, not all of it, but a lot of it does. I imagine there’ve been times where people are coming over and they’re all mentally psyched to Help Leo Out Today!! Yes! This is it, this is the day where I get to go help my disabled friend Do Things and Have Fun and–

Wait. What? Why is Leo making lunch? Wait. Why– No! Why is he getting up; let meee! This is my chan– Oh. Already done. Okay. Next time; the next time he needs something I’ll definitely do it and–

WHAT did I blink and miss something why he is standing up again?! Oh, OK then. Um. Right. I’ll just sit here then, and not know what to do or what not to do to make you feel crap. Crap! How do you make someone disabled not feel like crap? Oh, shit – should I offer to do more or will that make him feel like I think he’s disabled? But… he is? Yes but that’s a bad attitude, right? Treating someone like they’re not able. BUT he’s not?? Argh this is so hard–

WHAT IS HE DOING NOW OH MY GOD.

Maybe it’s not like that… but that’s sort of how I imagine I’d feel if one of my friends was me and I was placed in their position. I have no idea how to act, no idea how to express how I feel and what I feel and when I feel when it comes to fibro and disability. I used to think I did. It’s like I know all the words of a language but don’t know how to use the language itself. I can say a few repetitive sentences and precious little else. It’s all from a script. And it’s a shit script.

Bleh.