Mist and magic

A different kind of beautiful day ❤

Camp NaNoWriMo winner: I did the thing!

Today, I validated my July Camp NaNoWriMo project. For those of you who don’t speak fluent NaNo, that means I copied my novella draft into a little box on the Camp website and it checked my word count to make sure it was the same as, or more than, the goal I’d set myself for the month.

If you hit, or beat, you goal, you’re considered to be a winner. As I talked about when I finished my April Camp NaNo project, that terminology struck me as strange to begin with because it’s not a competition. But it is an achievement. It is a thing you work your ass off to do. Sometimes, it’s a battle with writer’s block. So when you complete it and hit your target, damn right you won!

I’m ridiculously excited to announce that the first draft of Car Thieves has a total of 20,092 words. Editing will begin within the next month or so, once I get Stone Flowers Grow In Cold Places published and launch my Patreon (within the next two weeks, for reals!).

I’m seriously considering doing NaNoWriMo in November. It scares the crap out of me because it’s 50k words, but I have this rule where if something terrifies me, I should at least try to do it. I have a concept in mind already (I know, shut up). In its current form in the back of my brain, it’s somewhere between a novel and an anthology, with chapters as a collection of connected-but-could-also-stand-alone short stories. That’s as much as I’m saying about it for now because it really is only a tiny little seed of an idea, but it’s growing 🙂

Five things I learned from living with a chronic illness

The response to my ME and me: Living with Myalgic Encephalomyelitis post has been so overwhelmingly positive and supportive that I want to write more about living with a chronic illness. One of the recurring themes of the last thirteen years has been discovery – I’ve learned so much about myself, the world and my place in it since experiencing life from a different perspective.

It’s easy to trot out cliched advice like “Never give up!” and “Stay positive!” but life isn’t always that simple and often that advice is nothing more than  a demand for you to experience your illness or disability in the manner most palatable to society while ignoring your own needs.

Learning to truly believe the five lessons listed here was a hard-won battle for me, but with each new bit of self-acceptance came new strength and new joy. I’m not going to pretend to have all the answers, but hopefully I can offer some food for thought.

You don’t have to fit the recovery narrative.
It would be amazing if everyone who was sick or injured could follow a simple set of tried and tested instructions and get better. It would be even more amazing if this looked exactly the same for everyone and happened within a predictable time frame. This is exactly how it happens for some people, but others may be living with the effects of illness or injury for many years, or even their whole lives. Many people live with degenerative conditions, so it’s not just a case of not getting better – it’s a case of definitely getting worse. If you don’t fit neatly into the recovery narrative box, it doesn’t mean you’ve failed or that you’re weak or not trying hard enough. Not everyone gets better immediately, or at all. Your experience is still valid and you are still deserving of acceptance. That also means accepting yourself.

You aren’t a professional inspiration.
Speaking of narratives around illness and disability, everyone’s heard of the inspirational disabled person, whether it’s the amputee who climbs mountains or the gold medal winner at the Paralympics or the person who lives with a chronic illness and is able to work full-time. Apart from it being totally condescending to take an “If that person can do it, I – an able-bodied person – can do ANYTHING” attitude (yuck!), it’s also unrealistic to assume that everyone with a disability or chronic illness is affected in the same way or lives with the same opportunities and limitations. Obviously I’m not in any way trying to minimise the achievements of people who manage those big, visible, awesome things, but it’s important to remember that if you can’t climb mountains or win medals or work full-time (or at all), that’s OK too. You do what you can do. Your value is not contingent on how ‘inspirational’ you are to people who will only ever see you as a one-dimensional representation of a concept they don’t even understand.

You don’t owe anyone ‘fine’.
I tend to focus on what I can do, the things that make me happy, and all the amazing blessings in my life. If the options are “Oh my god, this is terrible, the world is terrible and everything is going to be terrible forever” and “This is tough, but I can get through it”, I’ll go for the second option every time. It’s how I cope and it helps me make it through the hard times. The problems begin when I apply this to how I communicate with other people, specifically when I try to cover up when I’m struggling or pretend to be coping better than I am. It’s OK – in fact, it’s healthy – to learn how to say “I’m having a rough time and I need support” or “I can’t manage that today, but thanks for inviting me”. You are under no obligation to explain your life in detail or to justify yourself to anyone, but you’re also under no obligation to pretend to be doing better than you are at any given time.

Sometimes the easy way is the best way.
I adore cooking. One of my favourite things in the world is creating delicious, healthy recipes, making tasty soup or chilli to freeze for a week’s worth of lunches, and experimenting with ingredients I’ve never tried before. I even enjoy food shopping because I get excited thinking about all the things I’m going to make with the bargains I find. A lot of the time though, I’m simply not able to trawl around the shops or stand up in the kitchen for long enough to cook, so I rely on more accessible options. On those days (or weeks), I’m not microwaving a  bowl of tinned macaroni cheese as an alternative to cooking an amazing home-made pasta bake. I’m eating it as an alternative to eating nothing. I’ve started referring to food as accessible rather than convenient, and it has made such a different to how I think about it, as well as to how other people understand my situation.

You are allowed to have fun.
I’d hazard a guess that almost everyone living with a disability or chronic illness has experienced sharing a photo of a day out with their family, or talking about a party they went to, and had people respond negatively, assuming they mustn’t be that sick if they could visit the beach, go for a walk or have a night out with friends. When people respond that way, they don’t understand the whole situation. They don’t get how much pain you were in during the car journey, how difficult it was for you to walk to the place where you took that photo, how many days or weeks it took you to recover from that one late night, how much you have to sacrifice to have those happy days. Virtue is not earned through suffering and self-denial, and it’s not suddenly your fault you’re sick because you went to a concert that one time. Everyone needs to kick back and enjoy themselves sometimes – it’s good for the soul – and if someone judges you harshly for that, maybe it’s time to reconsider how much space they deserve in your life.

ME and me: Living with Myalgic Encephalomyelitis

Sometimes I mention here about being sick, being disabled, living with a chronic illness, my body not working etc but I don’t go into detail about why. This is because any time I talk in a public space about what’s wrong, I get hit with a heap of unasked for ‘advice’ and a barrage of “I read this thing about…” or “I heard about this one guy who…” or “My cousin’s next door neighbour’s friend had that and…” and honestly, it makes me want to fucking set people on fire.

That said, I like to provide context for the things I mention here, so I’m going to do that now. Even though it’s difficult as hell for me. Even though I’m steeling myself for a bunch of comments that make me want to throw my computer and then myself out the nearest window. It should go without saying that comments containing unasked for ‘advice’, an amazing ‘cure’ that totally works, or links to that one thing you read will result in you being set on fire. I don’t care how far away you are. I have my methods.

For the last thirteen or so years, I’ve been living with ME, which stands for Myalgic Encephalomyelitis (which I can just about spell without looking it up). You might not have heard of it because although it’s been around, and known about, for a long time, it is often referred to by the dodgy-as-fuck name Chronic Fatigue Syndrome, or CFS, which was invented in the 1980s by psychiatrists who liked to make money and medical insurance companies who like to save money. Referring to ME as Chronic Fatigue Syndrome is reducing a complex physiological condition to one unquantifiable symptom, which is not only inaccurate but dismissive and dangerous, although it does make googling it a hell of a lot easier. Yep, I am very fucking political about this. But hey, at least some countries are making progress (please make this happen in the UK soon!).

ME is not a psychiatric, behavioural or psychosocial condition. This means that it cannot be fixed with talking therapies or any form of psychiatric or psychological intervention. Misdiagnosis is not a good thing. Frustratingly, a horrifying but much-hyped example of shocking non-science (which has very recently been debunked – yay!) informed a lot of media coverage, medical approaches and policy relating to the condition. Hopefully things will get better for those of us living with it as the medical industrial complex around the world catches up.

It isn’t currently known exactly what causes ME, although there have been lots of theories but sadly very little actual research. What IS known though, is that it doesn’t affect everyone in exactly the same way for exactly the same length of time. Some people get better after a few months or a couple of years, some people get better after a longer time, and some people don’t get better at all. Generally, the longer you’ve been ill with it for, the lower your chances of making a full recovery – although some people do.

Something that massively ups your chances of getting better more quickly, or at all, is if you can completely stop doing everything during the acute onset stage and then gradually build up activity very slowly over a long period of time (this is NOT the same as Graded Exercise Therapy, or GET, which is at best useless and at worst seriously dangerous). This is really nice in theory, but when you literally do not have the option to do this because you can’t live without money, it throws a bit of a spanner in the works. For context, I became ill 13 years ago. This year, we could afford for me to stop having a job. So yeah. There’s some cold, hard context for you.

Because there’s a lot of snake oil and bullshit being thrown around by unscrupulous shitstains who like to extract money from vulnerable sick people, because people get better at different rates, because everyone loves a recovery narrative and tends to assume that correlation implies causation, you might have heard about people being ‘cured’ by doing stuff that doesn’t make any actual sense and can’t be in any way medically or scientifically explained. This is very frustrating because it detracts from the very real need for genuine research. So instead of suggesting that I eat more blueberries, just force myself to go running (HAHAHAHA!), or reprogramme my braindoodles with magical hypnowaves, please go and set yourself on fire. Thank you.

In terms of what ME does to a person, there are varying degrees of severity. Symptoms also tend to fluctuate, so things can be “meh, sort of vaguely OK or at least not totally imploding” one day and “holy fuck someone pulled my skeleton out of my skin and ran over me with a steamroller” the next. On a good day, I feel like I’ve been awake for two days straight taking acid at the gym and during the forty mile sprint home I got hit by a truck full of sedatives and pain. On a bad day, the truck full of sedatives and pain is pretty much driving over me then reversing again, repeatedly. And the driver is throwing shit out the window at me. You’re welcome for that mental image.

There are symptoms other than crippling exhaustion and constant horrendous pain, but they’re less fun to describe. I have allergic reactions to everything and nothing, leaving my skin often looking like someone set it on fire and put it out with a pitchfork. My ability to see fluctuates wildly (muscles control eye stuff and ME is shit for muscles) so sometimes my glasses are great and other times they don’t do a damn thing. My body forgets how to do really basic things like digesting food properly. If I get a cold, it full-on kicks the shit out of me for weeks, sometimes months. My brain fails and I forget how to word (yes, I am a writer and yes, this is a massive bastard of a hurdle to get over). My balance is screwed. Bright lights and loud noises hurt (and there you were thinking I wore sunglasses all the time cause I was famous). The world is an overwhelming sensory explosion of argh. Walking is (delete as appropriate on any given day) difficult/very difficult/what the fuck are you even trying to do/impossible, and it is always painful. I have walking sticks, but to use them I need a certain level of energy, coordination and upper body strength, so I can’t actually use them when I need them the most.

On top of that (Ha! There’s more, because of course there is) my back is a total fucking mess due to an injury that no-one took seriously for a bastarding decade after it happened, even though I was literally in hospital immediately after it occurred (although, to be fair, making sure I wasn’t having a fatal brain bleed was kind of the priority then). My spine is bent in a bunch of ways it isn’t supposed to be and everything healed in the wrong place, so the bones are wonky and nerves get trapped all the time. Although it’s past the point of being fixable, degeneration can be slowed down and possibly even prevented with certain types of physical activity. But guess what ME makes it really difficult, often impossible, and frequently counterproductive to do? Yep. Most of those kinds of physical activity. I can still sometimes do yoga though, so yay! Yoga also helps me not want to punch people all the time, which is a pleasant side-effect.

My knees are fucked up as well (I KNOW, I KNOW), also from injuries that weren’t taken seriously at the time and that have since healed wrongly and aren’t repairable. Luckily, before having ME, I spent a lot of time in the gym and doing other cool shit with my body to make my muscles big and awesome. I am endlessly grateful that I still have the strength I have. Also, using walking sticks is incredible exercise for the upper body, if you’re ever looking for a change to your fitness routine.

Living with all that stuff, in a constant state of financial instability due to all that stuff affecting my ability to do almost any job (“financial instability” is the world’s biggest understatement, but that’s another story), and having had the misfortune to become ill just at the point when the last Labour government had decided there was no such thing as sick people and therefore no financial help was given to those non-existent people, got my brain hardcore fucked up. This is getting pretty long already so I won’t go into detail here about the effects it all had on my mental health, but it’s miraculous that I’m still alive at all and my husband, parents and close friends deserve a lifetime supply of cookies for helping keep me around (mental health services in the UK deserve to be set on fucking fire though, or possibly just given better funding).

FINALLY, and with a huge amount of assistance from advocates who I swear are angels in disguise, I managed to claim Personal Independence Payment less than two years ago. This enabled my husband and I to get a home to rent that is actually accessible to me. It also enabled me to get a blue badge for my car, which means I can park in more places and have been able to claw back a little bit of the independence that being sick/disabled/bodyfailed took away from me. The process of applying for PIP, including the degrading and quite frankly terrifying assessment, was so traumatic that I remember very little of it due to numerous dissociative episodes. Those were fun, if you like returning to conscious awareness covered in your own blood because you sliced your arms and legs open at some point during the three hours you have no recollection of. What even is time anyway, right? My braintubes are much better now though. I promise.

Here’s the kicker. I might get better one day. I might get slightly better one day and a lot worse the next and a little bit better again a few months after that. Or I might be living with this for as long as I’m living. I look after myself ridiculously well and while I will always carry a spark of hope that one day this illness will be accurately understood, treatable and ultimately curable, I refuse to keep my life on hold waiting for that day.

You don’t often hear stories from people who have had ME for years because those are difficult stories to listen to from people who fall through the cracks and don’t get to tell them. The government, the mainstream media and a large proportion of people I share a country with constantly reiterate the message that I, and people like me, are lazy, worthless, drains on resources who would be better off dead. Every time we try to speak up, that’s the noise we have to raise our collective voice above and it’s fucking difficult. Especially when you’re so fucking wiped out you actually have to concentrate on breathing because your body keeps forgetting to do it until you almost pass out then gasp for air. That’s some scary shit.

I did not do this to myself. If wanting, trying, working, fighting, needing, wishing, or anything else within my power could make this better, I would have got better the day I got sick. I was super fit, healthy and active before all this. I was working full-time, overtime and then some. I was one of those assholes who got up at 5am to go running before work, ate food-prepped salads for lunch, and could get two hours sleep and be perky as anything the next day. I was a “Wow, where do you get your energy from?” person. Yeah, you know those people. That was me. Sorry.

My life and my body may have changed but the core of my being has not. I am determined and strong. I am grateful and hopeful. Sometimes I am frustrated and a bit defensive and I swear a lot. I have always been this way. I am neither an inspiration nor a cautionary tale.

I am one of many and I refuse to be silent.

If you want to learn more about ME (please do, so you can be an awesome ally!), I recommend these links:

  • The Canadian diagnostic criteria: This is the business! No “oh well, we’ve ruled out cancer and we’re not sure what else do to with you” here. A serious, detailed, medical diagnostic tool that, although not exactly a wild read, is SO worth looking at.
  • ME Association: A helpful resource based in the UK, which offers phone and email support to patients, their families and their caregivers.
  • The Hummingbirds’ Foundation for ME: This site contains a wealth of incredibly detailed and well referenced documents. Sadly, the wonderful human who created it passed away recently, but thankfully the site remains in existence and continues to help people, which is the perfect tribute to her.

Musings about Odin, warrior poet witch god

My tea had some words of wisdom for me this afternoon and inspired me to write this post. Sometimes tea is very clever.

If you read my blog specifically for things related to writing or photography, here’s a quick catch-up to put what I’m going to ramble about in context. I’m an eclectic pagan witch, meaning I don’t follow one specific tradition in my spirituality and witchcraft. My path has shades of heathenry, wicca, chaos magic and a whole heap of other influences, although in terms of deities I feel most resonance with the Norse pantheon. Context has now been contexted. Onwards.

I mentioned in a recent post about some weird spiritual stuff that’s been going on. Over the last few years, I’ve felt the influence, support and protection of Hel and Thor. If you want to google either of them, please remember to include +norse -marvel in your search or you’ll end up with endless pages of MCU stuff.

Recently, I’ve felt a nudge/grab/gigantic punch in the brain from Odin. I’m not going to get into all the details of this because a) it would be long and complicated, and b) you’d probably all think I was losing my shit, but suffice to say he has made his presence known to the point where I eventually had to stop being like “No, I can’t be bothered right now” and instead offer a firm “OK, I’m ready and I’m listening”. Looking back, I realise that he has been around for a while but I wasn’t in a place to talk to him. I am now.

There’s been a weird feeling of cheating on the deities I’d worked with most up until now, which I recognise is a strange thing for a polytheist to experience but also quite a logical thing to feel when the dominant religion in the country where you live, and the country where you grew up, are monotheistic. I don’t feel that the other two are no longer there, more that they still have that protective, supportive presence that they’ve always had but the new guy has more of a guiding presence, a much stronger pull.

Understandably, I’ve spent a lot of time in ritual meditation and buried in books and the internet. I’ve read the Havamal (including this beautiful cowboy version!) over and over, revisted parts of the Eddas that feel specially relevant and been open to whatever this extremely interesting deity wants to tell me through whatever channels he wishes to use.

Things that have struck me (and I do mean struck, like a big thwack in the centre of the chest), in no particular order, are…

  • Odin is not just a god of war. He’s a god of all sorts of things including ordeal, communication, ecstasy, seeking wisdom, death, and enlightenment attained through self-sacrifice. He is a scholar, a skeptic, a scientist, a writer, a wanderer and a wonderful party host. He’s a smart cookie and he takes no shit.
  • He’s a gender-bending magical shaman rock star. Seriously. For example, even though seidr (Norse witchcraft, to define it briefly) was considered a thing for the womenfolk, Odin was all, “Fuck your prescriptive gender roles and judgy ways, I’m gonna do this epic magic and I don’t care what anyone thinks”. I paraphrase, but you get the gist.
  • Dude thinks deeply. He worries about the worlds. He fears that his ravens (a gift from Hel, and whose names, Huginn and Muninn, roughly translate as Thought and Memory) might just bugger off one day and never come back. Even the All Father gets a bit worried about losing his powers of understanding and contemplation.
  • He is the ultimate warrior poet, a beautiful contradiction and an inspiration for anyone who believes that magic, art, science, emotional intelligence and strength can all co-exist in one complex, divine package.

Following a steaming pile of BULLSHIT in capital letters over the last few years, I’d lost sight of the part of my spirit that strengthened my voice, the part of my spirit that knew I deserved more than to sit down, shut up and shoulder the burden of all the crap going on around me. It had become broken, shrunken, hidden. More recently, it has recovered and grown again, stronger for the spiritual scar tissue it has gathered as it healed.

Over the last eight months, I  have left all that shit behind me, put my damn self on the path I wanted to be on, got serious about not wasting my skills or giving up on my dreams, and found my voice again. My body may not work the way other people’s do, I may be dis-abled by a society that is only equipped to be accessible to people whose bodies function in ways that mine can’t, and I may have have cracks in my bones and my mind that will never go away, but I’ve got my fight back, finally, and I will never, ever, let it go again.

I’m a strong believer in the importance of timing and opportunity, that no matter how amazing something might have the potential to be, if it comes along at the wrong time in your life, you won’t be receptive to it. I’m also a strong believer in strength, determination and the power of people who genuinely give a shit, to change things for the better – for themselves, for their immediate community and for the wider world they come into contact with physically and through the tubes of the interwebs.

And when a warrior poet witch god throws a storm at you, you open your arms to it and you fucking roar.

Inspired Escapism, a flash fiction collection now on Tablo and Wattpad

Inspired Escapism, a collection of flash fiction on the theme of self-discovery and exploration, is now available to read for free on Tablo and Wattpad. It includes the following stories…

Heartbled And Soulrisen
At an airport
“She may have armed her horsemen but no-one burns bridges like I do, so I raise a silent toast to her apocalypse and hope she spends her thirty pieces of silver on something that matters more to her than I ever did.”

The Mariana Trench And Everest
On a boat
“They say you aren’t supposed to be able to die in dreams, but I did. Every night I drowned in my dreams and every day I drowned in reality.”

What Did You Expect From Drugs and Holidays?
In the middle of nowhere
“I witnessed this shift from one world to another through tears and tinted lenses, wishing I was beyond my burdens and imagining them trailing by a rope behind the car and breaking into pieces on the road.”

In the years since this morning

In the years since this morning
Bruises have blossomed
I’ve become fiction
You’ve become d u s t

(I don’t know what any of it means. It just arrived in my head like this. Make up something interesting if you want)

My picture/words/make-up/face.