July in review

July has been such a busy month! All through 2017, I’ve been getting that feeling that time is flying by, passing too quickly. July has been different. It’s the last day of the month now and the first day feels like it was forever ago.

This month, I had three major missions. The first was Camp NaNoWriMo. This is the second time I’ve taken part and I really enjoyed it. I now also have the first draft of my next novella, Car Thieves, and am looking forward to starting to edit it.

The second major mission was launching my first novella (written during April’s Camp NaNoWriMo), Stone Flowers Grow In Cold Places. This was a pretty scary thing to do, but over 200 people have read it in the last couple of days which is really exciting for an unknown author publishing their first book through their own little website and two online publishing platforms they’ve only been using for a few months! I’ve had some really positive feedback, both for the book itself and for finally publishing a thing, and it’s been trending on Tablo since a couple of hours after I posted it, which feels incredible.

The third big thing was launching my Patreon.  This was scarier than launching the book and even though I’m still very much at he beginning of my Patreon journey, I’m super excited that I’ve had some monthly pledges already. David, Peter, Spitfire, David and Roberta – thank you, you lovely, supportive people!

This month, I posted two things here on my blog that I was really nervous about posting. The first was ME and me: Living with Myalgic Encephalomyelitis and the second was Five things I learned from living with a chronic illness. The reason for the nervousness was that I don’t talk about this stuff in detail online very often so it felt huge to open up about something that affects every area of my everyday life. The response to both of those posts was amazing and I am endlessly grateful to everyone who commented and shared the links on social media. As unnerving as it is to know that literally thousands of people had seen those very personal posts, it also feels really good to know that I’ve helped people to learn about an illness they either hadn’t heard of before or didn’t know very much about.

I also shared a second vlog on my YouTube channel, thanks to my wonderful friend Nicole who loaned me a camcorder so I don’t have to use the front-facing camera on my phone to make videos! I haven’t done much on YouTube since launching the channel a couple of months back, but I do intend to make more videos, hopefully when I don’t look completely exhausted and am talking a bit more coherently than I’ve managed in the two I’ve uploaded so far.

Final July thing – our back garden is almost finished! I take basically no credit for this because it’s all been my husband’s hard work, although I did do lots of driving around with a car full of wood and turf. All the raised flowerbeds are built, the lawn is an actual lawn rather than a patch of grass and a patch of mud, and we’ve started thinking about what plants we’re going to get. My strawberry plants finally got to move out of their pot on the bedroom windowsill and into their new outdoor home (see photo above). When my friend Robin gave me those plants, they were tiny stems with a couple of leaves, but they’ve grown up beautifully and I’m so excited about being able to eat my own strawberries grown in our garden.

The last day of the month feels like a new beginning. Yesterday, I was hit with a big blast of meh, the kind that happens when you finish a bunch of stuff you’ve been working on. This morning, the meh had mostly lifted and I felt excited and happy again. I spent some extra time at my altar this morning then smoke cleansed the entire flat and garden. As soon as I’d finished smoke cleansing, it rained for about five minutes – the perfect thing to wash away the last of the meh (and help the new turf bed in).

I’m looking forward to what August brings, beginning to edit Car Thieves, finding out more about how to promote my Patreon and enjoying the rest of the summer. I hope you’re having a wonderful summer (or winter, for my friends in the southern hemisphere) ❤


You can visit my Patreon here. If you’d like to make a one-off payment without a monthly commitment, or add a bonus on top of your existing monthly Patreon pledge, you can do that simply and securely through PayPal.

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.

Self-care printables for help with anxiety, depression, PTSD and dissociative episodes

For various reasons, including high pain levels and horrendous sleep-maintenance insomnia (when you can get to sleep but can’t stay asleep, and your sleep is highly fragmented), I have days when I struggle with anxiety attacks and dissociative episodes.

Because I want this blog post to be a non-triggery safe space for people who may have found it because they’re having headweasels right now, I’m not going to go into detail about symptoms. Instead, I’d like to share a coping strategy that helps me. This is not intended to be a substitute for medical advice and it may not work for everyone. All I know is it works for me and therefore might be helpful to others.

I use my journal to do this because I find writing with my favourite fountain pen in a lovely notebook really calming, but if notebooks aren’t your thing or you’re not in a place to start laying out worksheets for yourself, I’ve included downloadable printable versions at the bottom of this post. They’re jpegs so you should be able to open and print them on pretty much any device. They’re A4 size at 300dpi so you can scale them up or down to suit. Anyone is welcome to download and use them. I’m fine with them being shared too, but please share this post directly rather than downloading and reuploading the files. Thanks 🙂

 

Self-care and comfort

Things to do today
This isn’t intended to be a giant list of super important tasks for work or hardcore housekeeping. It’s supposed to be a list of things that help you to stay safe and comfortable, and perhaps a few things that you really need to get done. For example, my list for today includes cuddling my cat, a short yoga practice, laundry, and a quick check on my emails and social media notifications. Depending on how you’re feeling, you might want to include some basic personal hygiene tasks, or a reminder to call or chat online with someone you love.

Eat something
When my mind is imploding, I suck at remembering to eat. It’s generally a good idea to eat something a few times a day, so this section on the printable has five stars (they could’ve been boxes, but no, stars are better) so you can colour one in or tick one off every time you have a munch. Feel free to add more stars if you like – whatever works for you.

Drink something
I’m referring to water or tea here, although if the only way you’re going to consume liquid is if it’s in a sugary or fizzy format, at least you’re hydrating so don’t beat yourself up over it. It’s a good idea to drink at least two litres of non-alcoholic, preferably non-caffeinated, liquid a day. I’ve included five stars here too, but you can scribble one out or add more to suit the size of your favourite mug, glass or water bottle. If thinking about amounts of things is too much at the moment, just use this as a reminder to drink something.

Move around
I’m not talking about doing five gym sessions or five long walks in one day. This is simply meant to be a reminder to get up out of your chair if you’re able to, or stop what you’re doing and have a stretch if you aren’t mobile. If you’re able to incorporate some exercise-exercise, great. If not, don’t worry. This is about getting you through the day, not pushing yourself to the point of collapse.

Listen to…
When you’re having a difficult day, it can help to have a list of some of your favourite songs, artists, playlists, radio stations or albums to listen to. You don’t have to work through the list – it’s supposed to be there so you only have to think about this stuff once and then have a resource to refer back to for the rest of the day.

Watch…
Sometimes a favourite film or TV show can provide comfort, distraction or much-needed smiles. This is a space for you to make a short list of films or shows you love so that if you hit a point in the day when you need something to watch, you can just pick something from the list without having to start making big decisions.

Remember…
This is a take-it-or-leave-it bit, but it really works for me. Make a quick note of something that helps you to feel better. It could be a mantra like I am fine the way I am, or a reminder like I am loved, or something that you’re looking forward to like The weekend starts tomorrow.

 

Check in

Honestly, I laughed at this concept the first time I heard about it but when the shit really hits the fan, I’ve found it super helpful to ground me in my surroundings and my body. A check in is basically time you take to go through what’s happening in your physical surroundings, what you’re doing and how you’re feeling. It can take two minutes or half an hour – it’s up to you.

What time is it?
Don’t guess. Look at a clock, your phone, your fitness tracker, your watch, whatever. This gives you context for this moment in your day.

Where am I?
Try and give a bit more information than simply at home. For example, my last check-in “where” was in my favourite chair in my living room. This creates some solid detail.

What am I watching or listening to?
This gives you another bit of solid detail to ground you in your surroundings and gets you using your senses of sight and/or hearing.

What am I doing?
Resist the urge to write a check in! This is a prompt to do something to ground you in your body – eating, drinking, brushing your hair, stretching, massaging your feet etc – and gets you using your sense of touch.

What feels comforting?
A check in is a reminder to appreciate comfort, and create some if you can’t immediately recognise any in your surroundings. My last check in “comfort” was my orange scanted candle. Yours could be your snuggliest sweater, the light from your favourite lamp, the feeling of the lawn under your bare feet, anything in your immediate environment that makes you feel good, even in the smallest of ways.

How am I feeling?
This can be a one-word answer, a short sentence or a stream-of-consciousness ramble – whatever you need it to be. It doesn’t have to show progress and it doesn’t have to be filled with positivity if that isn’t where you’re at right now. It’s simply a prompt to notice what your emotions are doing and accept them.

Draw something
Seriously. It doesn’t matter what you draw or how detailed it is. It’s just a little task to do, something that gets your brain and hands working together. You can use it as a tool for expression or catharsis if you want, or you can doodle random shapes. It doesn’t matter. High-five for any Hannibal fans out there who are drawing a clock right now.

 

Grab your printables

If you’d like to grab the printables, click on the images below to open and download them full-size.

self-care-and-comfort-printablecheck-in-printable

 

A final note

I created these tools based on my own experiences and needs, and you are absolutely welcome to edit them to suit yourself. For example, depending on your senses you might skip the bits about watching or listening to things, or add more touch-based resources. If writing isn’t accessible to you or isn’t something you enjoy, you might prefer to speak your answers out loud or just think about them without any external expression. If you think it would be helpful to keep your worksheets to look for patterns, you can totally do that, but it’s not what I created them for. If you want to throw them away at the end of the day, that’s cool too. You do you. You’ve got this ❤

I Miss The Girl I Almost Was

i-miss-the-girl-i-almost-was

i miss the girl i almost was

she sits lightly on the edge of the bed
at 4am and brushes my hair back from my
face with a touch like spiders’ footsteps

her breath is like ice and
her wishes are weightless

she wraps a strand of promises around
her fingers and kisses me goodbye again
with lips like polished crystal

she waits for me at crossroads

she is always cold

– – – – –

I know I usually post poetry without much explanation or context, but I want to talk about this one a bit.

First of all, anyone who knows me well or reads this blog regularly will notice the weirdness of the use of the word ‘girl’ in relation to myself. It’s not a label I feel fits me at this point in my life, partly because of my age (are thirty-six year old ‘girls’ really a thing?) and partly because I rarely gender myself in this way at all and feel very much ‘they‘ rather than ‘she’. That said, for most of my life it was like “Well, everyone else looks at me and thinks ‘woman’ so I guess that’s what I am”, regardless of how I actually felt about myself. So yeah, it feels a bit strange for gender-ambivalent me to say ‘girl’ but I wrote this poem quite a few years ago and I don’t want to change it now, cause for whatever reason it felt right at the time.

The fact that it’s not recent is also important. For a long time, I didn’t feel like I was really over the eating disorder that had been a big part of my existence from childhood until my early twenties. It haunted me like the ghost of something I could have been, which is what this poem is about. I’m happy to say that I’ve recently started to recognise that I am genuinely, fully recovered. I look in the mirror and see what is actually there, not some terrifying shape-shifting nightmare of myself. I enjoy cooking and eating food and it is not attached to any feelings of guilt or shame. I used to wonder if I would ever reach this point, so it’s a big deal to realise that I have.

I guess this poem is a tribute to someone I might have been but also to someone I was for a very long time. The people we’ve been are the building blocks of the people we are and I wouldn’t be who I am today if I hadn’t also been that person.

When I Say I Can’t

when-i-say-i-cant

When I say I can’t do something, sometimes it means just that—I am literally not physically capable of doing that thing, no matter how much I want to or how hard I try. Sometimes it means that while I could possibly force myself through the ordeal, with the help of stimulants and painkillers but still exhausted and in extreme pain, after days of bed rest to prepare for the exertion, the effect that will have on me afterwards is not worth it.

This is the effect it will have on me afterwards. I will be profoundly exhausted to the point where sitting up, walking and being in an environment other than a dark, quiet room are extremely difficult, and preparing food for myself, washing my hair and body, and getting dressed are most likely impossible. The sensation of hearing any noise above a quiet whisper or looking at light brighter than what creeps in through the crack in the curtains is physically painful. This makes any form of communication, in person or at a distance—even talking on the phone or using a computer—uncomfortable at best and impossible at worst.

I will be in so much pain that I cannot sleep for more than a couple of hours a night. That, combined with the extreme exhaustion, means that I’m running on adrenaline and very little else. This perpetual state of fight-or-flight, the feeling you get when you’re leaning back in a chair and it tips into instability, triggers constant, intense anxiety. Because the anxiety is not about anything, it cannot be talked through or effectively managed with tools that are used to reduce anxiety caused by emotional factors. It is just there. The longer it’s there, the more frequent the panic attacks and dissociative episodes become until pretty much every waking moment is one or the other, or both.

What I desperately need to do in this situation is sleep. A lot. Deep, restful, restorative sleep. This does not happen for all the reasons explained above. The longer it does not happen for, the worse everything gets until I reach a point where I can’t sleep, can’t eat, have no idea what’s going on and am absolutely terrified, all while being so exhausted I have to concentrate on breathing and in so much pain that there is no respite from it no matter what I do.

Life does not stop because of this. Things do not stop needing to be done. The world does not become quiet, dark and undemanding for me. Even when I am able to say no to everything and take the time I need to begin to recover from whatever put me in this state to start with, it does not improve in a matter of days. It takes weeks. Sometimes it takes longer. During that time, I question myself. I feel lazy, guilty, worthless, useless. I most likely have to say no to things while struggling to explain why, managing only “I can’t” or “I’d be a mess afterwards” and people generally don’t get what that means.

I have spent more than a decade with no choice but to knowingly do this to myself because I had to work in jobs that required it. Financially, I had no other option. None of this is because I haven’t tried hard enough to get better or have lacked a suitably positive attitude or don’t know how to look after myself. Trying hard and getting through things on attitude alone are all that has kept me going. I know exactly how to look after myself—the problem has been that my life has not allowed for it, even at the best of times.

Now I am lucky enough, and have sacrificed enough, to be in a position where I can say, “No, I can’t”. When I do this, it is not laziness or negativity or a lack of determination. It is a conscious choice not to live in hell. It is not avoidance or giving in to a fear of what might happen. It is self-preservation due to being acutely aware of exactly what will happen, based on what has happened, what does happen.

So when I say, “Things haven’t been great for the last little while”, this is what I’m referring to. When things haven’t “been great”, I will still occasionally have a good day when I can do a little more than I’ve been able to do on the other days, but these good days are not predictable and if I push myself too hard on not-a-good-day, I hit rock bottom again. This makes it incredibly difficult to plan things because while I might wake up one day and be able to do a little more, I cannot know in advance when those days are going to be.

For more than ten years, every decision I made was based on one question—”Can I do this?”. Not “Can I do this safely and without drastic negative consequences?”, but “Can I force myself through this somehow, no matter what happens?”. How I felt wasn’t even a factor. This became my natural state of being to the point where I forgot how to consider how I felt. Whether or not I wanted to do something didn’t even come into play. I forgot not just how to consider that, but what it meant.

I am gradually learning to think about how I feel and what I want again, to remember what those words and thought processes mean, and that they are allowed to factor in to decision making. I am slowly getting to grips with saying no, with remembering that I am not lazy or worthless if I can’t do something. I am getting better at shutting down conversations where people try to tell me, often in subtle ways, that this is somehow my fault, my doing or my choice.

I wish I was better at explaining all this, that I could do it concisely with one short sentence instead of fifteen hundred words. Or maybe I wish I was better at remembering that I don’t have to explain it, but I’m not there yet. I still live in a world that requires justifications, that says, “It could be worse”, as if only the one person on the planet who has it worse than anyone else is ever allowed to be anything other than fine. I still live in a world where the government, the mainstream media and everyone who listens to those things believes me, and people like me, to be nothing more than a waste of space and a drain on resources. It is hard not to feel anger about that, but anger requires a lot of energy and I have better things to do.

Most of the time, I am invisible because I exist behind closed doors. People do not see me unless I’m physically able to be in human company. On those days, I do not look sick. I am an expert at the casual rest stop, the undetected lean-against, the cover-up of under-eye circles and too-pale skin and the effects of my own immune system turning against my body, and the disguise of shaking hands and blurred vision. My autopilot, the detached, robotic thing that smiles through my face and says “I’m fine, honestly”, is finely tuned. For someone who prioritises honesty in almost every aspect of existence, I am an excellent liar when it comes to answering, “How are you?”. I can even manipulate myself into believing the things I tell other people. I know I do it and I do it anyway. But I shouldn’t. And I shouldn’t have to.

I’m not even sure why I’m writing this other than I need to get it out of my head. Maybe someone else who lives in a similar situation will see this and feel less alone. Maybe someone who doesn’t believe that a person can seem alright on the surface and be invisibly falling apart will see this and realise that their assumptions are flawed. Maybe I’ll read it tomorrow and hate myself for putting something so raw out into the world where people can judge me harshly and continue to believe that I’m weak, lazy and unmotivated, even though that couldn’t be further from the truth.

I don’t know. I just know that it needs to be said, so I’m saying it. I’ve said it. It is not for validation or sympathy or sad-face emoji responses. It is at least partly because this can no longer be the one thing I am willing to lie about. I am left wondering why the truth of this is such an uncomfortable, ill-fitting garment but also knowing that I will continue to wear it.

Anniversary Happiness and Julehygge

dsc_0011-01

Yesterday, D and I celebrated fourteen years of marriage and fifteen years of being-together-ness. We don’t usually get to do much for our anniversary cause this tends to be a really busy month for both of us but this year the planets, stars and schedules aligned, so we were able to spend the day together doing lovely things. We had a whole afternoon wandering around the National Museum of Scotland (the photo above was taken from the seventh floor roof garden), went to a gorgeous little Lebanese restaurant (with the best hummus ever) for dinner, then headed home to play with our newly acquired Nintendo Wii.

I’m honestly so excited about the Wii. We’ve been a zero console household for years because D tends to play PC games and although I love a bit of Tekken, I’m not into gaming enough to justify the cost of consoles and games. A few years ago, friends of ours got a Wii and after some tipsy Mario Kart sessions we were both hooked. We thought “Yeah, we should get one of those some day” but never got around to it. After realising how cheaply they can be bought second hand, we decided to get ourselves one. It’s black. Because of course it is. Grown-up goths forever.

dsc_0010-01

This post is basically All The Happy. I absolutely adore this time of year and I’m so grateful to be spending this Yule in our lovely new home. Ever since I heard the word hygge (kind of a physical and emotional cosiness, but here’s the Wikipedia article for a better explanation), it has played a part in pretty much every choice I’ve made about decor, lighting and furniture. I was looking up how to use hygge correctly in a description (I think it’s hyggelig or hyggeligt but I’m not sure which) and found a perfect word that I didn’t know existed until tonight – julehygge! It’s hygge specifically for this time of year.

I’m sitting in a room lit with candles, a glitter lamp and fairy lights on our baby tree (it lives in a pot and will be spending the rest of the year in the garden, growing up). There’s gold and black tinsel on the yukka and the rubber plant. There’s a cat snoozing on a pile of cushions next to me. I’m wearing pyjamas, wrapped in a fluffy blanket and feeling snuggly (and hyggelig/t). My parents are arriving this time next week for a few days and D has two more days at work until he’s off until the end of the month.

The last decade has been incredibly tough. Living with a chronic illness where I’m in almost constant pain and running on very little power can make things really difficult, especially as it massively affects my ability to do the exercise I need to do to minimise progression of the damage to my back and legs from an old injury. I took care of myself as best I could but I’d been skimming along rock bottom the entire time and as much as I needed to completely change how I lived my life, I couldn’t do it in any meaningful or effective way because it wasn’t financially viable. Right now, it is, just about.  I ended a part-time freelance work contract that had been causing more unhappiness, stress and cognitive dissonance than it (or anything, really) was worth. It was a big, scary step but it is one hundred per cent the right thing to have done. We’re super careful with money because we have to be but I’m finally able to give myself some much-needed space to prioritise my health and manage my time instead of struggling to get through each day.

December is my month off. I made a conscious choice not to plan, not to think about the future and not to make any big decisions. This is a luxury I have literally never had before in my life and I am so unbelievably grateful that I have it right now. Come January, I will focus on what happens next and what I want to do. I intend to give full and honest consideration to what is realistic for me and remember that waking up crying every morning after two hours sleep because everything hurts and my brain is imploding, loading up on frustratingly necessary stimulants and painkillers to get through the day, and accepting dissociative episodes as the refreshing alternative to near-constant anxiety attacks is not feasible. Until then I am allowing myself to nurture a beautiful sense of hygge, spend time with friends and family, go for wintery walks when I’m able to, make our home extra lovely and allow parts of my soul to resurface and grow that had been buried under pain, exhaustion and fear for far too long.

My heart is so full of gratitude and love. In a world filled with so much violence and horror, especially right now, I appreciate every second of goodness and am in no doubt about how immensely lucky I am.

❤ Tanya