Art is hard; A crisis of artistry, identity, and disability.


[content note; mention of self harm]

I’ve been talking a lot about my mental health lately, a part of finally trying to put together all the pieces and understand myself; who I am, and perhaps even a little bit of how I work. Right now I’m at a point where things are not positive, I’m in a hell of a low and yet
somehow, in this darkness, a spark of creativity has turned up.

I was suddenly itching to do something, fidgety, almost vibrating. I wanted to create something, to paint. This is something which is intrinsically linked to higher moods rather than lows like this and I had no idea what to expect, I still don’t. Usually when creativity rears it’s head and I feel compelled to find an outlet I’m in a place where I’m almost high. I’m happy, confident, and proud. I can’t be dragged away from what I’m doing and while I’m self-destructive and coming apart at the seems,experience of making something ultimately leads to an immense feeling of relief and satisfaction, even of affirmation.

23103330665_7d005bd0b3_kStereotype as it may be, my art, and creativity more generally, are very heavily linked to my mental health, particularly mental ill health.

Spouse and I just had a big chat about art as being a part of my identity, a part of who I am from it’s presence in my formative years, my always doing it, and it’s sort of helped me to wrap my head around why it’s such a frustration now when it used to be such a happy passion. It seems like this new development for some people I’ve got to know, a kind of ‘ooh I didn’t know you could paint’, but I’ve always had ‘artist’ as a big part of me in so many ways even if at times it felt fraudulent for my lack of creating.

I would always have a sketch pad around when I was younger. I’d be chatting away on IRC or reading and drawing at the same time. It was just always there, every day.  Art supplies of all kinds littering the office our computers were in. Over time this familiar artistry started to go, and not because I wanted it to but rather my body just didn’t want it to happen. I kept having to take longer and longer breaks, spend more time on individual pieces.

As puberty kicked in my Ehlers Danlos began to really make itself known. To hold I pencil I started having to tape my fingers and
wrists to try and hold off the dislocations and restrict movement. Sketching turned into painting as it was easier on the joints in my fingers, I kept going with projects here or there instead of having it as a constant. I started putting breaks between works, putting away the sketch pads and adjusting to a life without it. While the tape reduced the dislocations and strain on my fingers it’s not a perfect solution, and the strain still took it’s toll. Over time I continued to do less and less, brushing it aside where possible to save myself the pain and dexterity loss, and it’s reached a point where it’s become a rarity.

Art helped to keep me toge22673896828_3b2f33ceb5_kther as it was a distraction from everything, all the time. Now I’m at a point where, while all my creativity comes out in massive bursts, it doesn’t offer that same escape from my pain and problems because it’s a bringer of them.

Every time I do a project I want it finished, I want it perfect. I disappear into it like I’m completely detached from the world and it absorbs my full focus, often accompanied by a severely negative or destructive set of behaviours and lines of thought. It’s something that it’s hard to drag myself away from and if I do I feel a deep sense of loss, like I’m incomplete.

As things are now, I seem to just be turning the corner after a week of having meltdowns. My desperation to paint has consumed me and it’s taken over everything, bringing with it explosive irritation and anger, immense frustration at seeing my limits so plainly pointed out and a sense of loss along with it, very little sleep, my desire to self harm has gone up enormously, I’m quite literally tearing my hair out at times.

I’ve not finished the painting that I started, a large project I’ve been wanting to do for the best part of 2 years, the urge to get on with it surfacing intermittently in that time. My hands are taped up heavily in micropore and my wrist is in a brace, I can barely move my fingers for bruising and any strain or movement brings grinding clicks and a feeling of movement or something being out of place deep under the skin of my hands. Under a haze of oramorph, I still have that same drive to make something pulsing away. I want to finish and I’m deeply upset and disappointed in myself that my body has failed me so close to it’s completion.

With losing this ability, having a constant creative outlet turned into a bizarre, frustrating, and painful performance of human fragility, it’s like I’ve lost a big part of who I am. Something that was part of the very fabric of my life and helped me escape so much has been stolen away piece by piece.22470032224_580c6a3145_k

The more that I create, use my hands to excess in ways requiring strain or dexterity, the less I’m able to in future. Each time I try to do something like this it’s stretching me beyond the limits of what my body can cope with and, while my brain is pushing me not to stop until it’s finished, in doing there is a significant pay off. Over time it amounts to expedited though inevitable damage and a greater chance of additional mobility and pain problems post-recovery (usually 3-4 months).

What frustrates me further is that, having this change over time from a tool of calming escapism to an almost traumatising experience at times, finding the pain and harm I’m causing myself by pursing it, I fear I’m going to begin hating this part of me. I already find myself feeling negatively of any desire to be creative, trying to force it aside when it arises, and I have worries that this very part of my identity is going to become something I both desperately want and deeply resent for no longer having access to it.

I’m losing my artistry and along with it a part of my identity, and it’s dawned on me how much of it has slipped away over the past 4-5 years. I have this massive part of me that I’ve been trying so hard to ignore for self preservation, this great love in my life, and to pursue it is going to cause irreparable harm both physically and mentally.


Art is hard.

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I am not here to inspire you.

In the past few days, as a result of publishing a long piece on my physical and mental health, I’ve had a few offers to write for a few different places. Start-up magazines, blogs, nothing major. Most of them have phrased their offers around the idea that I’m an inspiration, how I’m managing with my health and being so open about it, going about my daily life with that as a factor, and somehow that will inspire people. Inspire them to do what, you ask? How does my terrible physical state in anyway inspire you to do something?

Oh yes, it doesn’t, because it’s not really about being ‘inspired’ at all, is it? It’s about sharing a story of adversity and triumph, about people looking at my life, laid bare in  print, and going “wow, at least my life isn’t that hard”. It’s about managing to adapt to daily life and do normal everyday things that normal people do. It’s a message of “wow, if they can get on with things then what’s my excuse?” or at times even just a chance to read a sad or feel-good story of how a person has overcome their disability and learned o cope. Hooray! Happy endings!

They want a sanitised version of how life is, a vague notion of illness which doesn’t really have much of a description. They don’t want the symptoms; the incontinence pads and catheters, they don’t want staying in bed because everything feels so horrible and wrong, or being unable to get dressed without help, fall and injuries. They want a vague idea of some nightmarish scenario that somehow you consolidate with your life and you come out stronger. They want bravery from you, a sense of not giving up no matter how hard it gets.

While for some that can happen, it’s certainly not true for a lot of people with disabilities, illnesses, chronic pain, mental health problems and so on. My life is an ongoing battle with symptoms that pop up, criss cross, affect one another, and it becomes a huge mess of not-coping. I’m not getting a happy ending and I’m not triumphing over my life’s pitfalls, I’m living through them, I’m learning to adapt to them because I have no choice. There are some things where I haven’t learned to adapt at all and have no intention of doing so because I know the difficulties that will be involved. I’ve lost my entire future to disability and no attempt at getting it back will work. Am I less brave for not trying now? Less inspiring?

Asking a person kindly and respectfully to write a piece talking about how life is for them and how it will all play out in future is one thing, but a lot of these offers don’t come in that way. They’re abrupt and to the point. “We want your story, you could inspire a lot of people.” They pay little mind to the fact that the story in question is a life. They’re asking to take a piece of you, lay it bare online for all to gawp at. Your words, your life, you struggles, so that people can read and marvel at your world, be amazed at how you manage to do all these everyday things like a normal person does.  It’s disgustingly exploitative. It’s unbelievable how many people offering these writing opportunities will outright refuse to pay for your time and effort. There’s the idea that the offer of a platform, however big or small, is compensation enough. “It gets it exposure, so many will read it!”, “you get to spread awareness” It’s as though they’re doing you a solid by putting it up, rather than you doing them one by giving your Labour and a part of your life to them.

the-only-disability-in-life-is-a-bad-attitude-1It goes down the same kind of line as ‘the only disability in life is a bad attitude’. You become a shining example of the Good Disabled  who gets on with daily life and wo
w, even though it’s all so shit and depressing and clearly very awful you can still smile and laugh! Who knew?! The default consideration of disability is that the person who lives with it must be in abject misery, there’s no nuance in the overall message, that you can have a big and complex life with ups and downs, just like everyone else, or even of the vast differences in the wide spectrum of disability. All that’s really wanted is, once again, ‘at least I don’t have to live like that, I can’t complain”

This gets particularly insulting of late given things what disabled people are facing in the UK. The lives found so inspiring, the lives that readers use as a yardstick to measure how good they should feel about their own lives, are being turned upside down and inside out by austerity. We’ve been facing cuts across the board, from our housing, our Motability cars, we’ve seen cuts to our benefits, increasing use of food banks, energy poverty meaning you’re having to keep the heating off at the detriment of health,  and more and more sanctions. There’s the bedroom tax, the struggling mental health services so badly underfunded that even if you need help dealing with it all, you could find yourself refused or waiting a long time. Of the demographics that are most impacted by the cuts to social security, health, and social care, disabled people find themselves ranking top, taking the brunt of the hardship.

I’ve seen immense hardship among my circle of elective family and friends. I’ve seen a lot of pain, terror, and panic attacks at rumours of more and more cuts being announced or leaked. The dread of the brown envelope coming through the door and the understanding that you probably won’t get the help you need. Even if you’re too ill to leave the house, you’re expected to move into work anyway, leaving you with nothing and no hope of gainful employment. You have the constant despair of knowing that the inevitable brown envelope could ruin your life, spell homelessness, starvation, and poverty.

As well as completely papering over the hardships to keep this vague, homogeneous and inspirational idea of disability alive, it also ignores what can be considered huge triumphs. Getting out of bed is a mammoth task at times, it can deserve a round of applause. Taking a shower? Get out the party poppers! They’re things that you can be proud of, achievements people don’t expect or understand, but achievements nonetheless. They’re achievements no one wants to hear about. Reading someone going on about their daily life and struggling but overcoming each little challenge presented just isn’t inspiring enough. Making a meal or going shopping just doesn’t give the same sense of personal gratification as someone who, say, has a job, children, or gets an education in spite of it all (I use ‘in spite’ here as it’s precisely how it’s put forward, a triumph over disability rather than it being a part of you).

If you ever feel like offering someone a platform to speak about something person on your website, or an ‘opportunity’ to write an essay for you, seriously consider what it is you’re saying to not only that person, but to those who read it. I’ve seen an astounding lack of consideration in this area for years and it’s infuriating, I’m not tolerating it anymore.

I’m not your inspiration.


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Mapping the intangible

Odd One Out2

Content note: Very detailed talk of suicide and self harm, rape, disordered eating

I’m sat on my sofa, exhausted and in a lot of pain after a night of restless sleeplessness, trying to get in the frame of mind to allow me to explain how my head works. Not my actual head, of course, but rather the jumbled basket of emotions, thoughts, moods,  and reactions that I have day on day, year on year. The things that make up who I am, or perhaps that mask who I am. They’re ever changing and splinter off in different ways, making odd connections where you wouldn’t think one could arise, or seem inexplicable but are linked nevertheless.

For a long time now I’ve been wanting to try and get some record of or try to find a way to explain how my moods, thoughts, and emotions have impacted me, perhaps take stock of the turbulence and upheaval that have an enormous presence in my life. If I can get it out of my head and into something that doesn’t completely escape description, even if it’s just a fraction of it, it can surely only help. The more I learn about myself and how to express precise moods, emotions, trains of thought, the less I seem able to do so. A quest for a precise description of self-analysis has led to over-analysis, and employing techniques of mindfulness in recent years have only escalated this. Recently I’ve gone back to seeing someone who’s helped me a lot in the past and I’ve been asked to try and think about or maybe write about what’s going on with me. I know something is wrong but I don’t even know where to begin in expressing it, the sheer scope of it baffles me. Where do I even begin?

I’ve had mental health problems dating back to my childhood, low moods, high moods, anxiety, irrational anger, impulsiveness, obsessive and disturbing thoughts that don’t feel like my own.  I don’t really know what qualifies as who I am any more and I’m not sure that I ever have or will. How do you find the line between personality developed from lived experiences and moods, emotions, entire ways of thinking that are constantly destructive, intrusive, or otherwise harmful, colouring almost every period of your life in different ways? Is there a line between them or is it something I have to accept as being part and parcel of my personality? No matter what it’s becoming eminently clear that the two are always going to be intrinsically linked. While a line may one day make itself clear, my experiences have been impacted by the moods I had at the time, my responses to situations have been clouded by them, my reason differs with each leading to an outcome that may otherwise not have been. It’s woven into the minuscule bits of context that have made up who I am.

I often wonder what I’d be like without it. If you took away the constant whizzing, clouded, grey, itchy, or loud thoughts that circle my head. If you stole away the feelings of greatness, elation, and joy in times of great pain and sorrow, or unworthiness, shame, and wanting to die when life around me was actually better than it had ever been, how different would I be? Would those experiences have led me to be a different or better person? I’ve always had a passion for learning but struggled with it desperately, always unable to focus or absorb information under what felt like immense pressure and inevitable failure. Would I have been able to cope in structured education? Could I have managed with my physical problems better and made something of my life instead of just desperately trying to keep myself from drowning?

Around this time last year I had come off the antidepressants that had been prescribed a few years earlier, finding that while they were successfully dampening the highs and lows I formerly had, making the transitions between them slower, it seemed as though everything had been slanted towards the lows. For the previous few years I had barely done much at all, my thoughts were still switching between a chaotic and distressing buzz and sluggish enveloping cloud. It was as though I was stuck in a loop of frantic self-loathing, an almost calm sombreness, and acceptance of eternal worthlessness, all the while battling to be better. Something about the feelings made them harder to remember, hazy, I couldn’t think back and place how I felt or associate things with moods and any swings that I had. When I try to think back it’s just this grey fog and a vague understanding of what lies beneath it.

I was sick of feeling stunted and began romanticising what it was all like in the past. My moods and the thoughts and emotions they influenced were so incredibly vivid, in my mind they’re like bright or dark colours, solid or beautifully mingled images that are easy to picture and associate with seasons, music, art, activities, colours, memories of feelings and even smells. In my head I cherry picked the times I had channelled the pain into writing or began to see lows as this struggle that bettered me in the end, after all I got through it didn’t I? It’s better than not feeling things so clearly, surely? Also the times that my elation, this almost palatable high and focus channelled so beautifully into art. Days upon days of not sleeping, just focused on getting everything perfect, hour after hour of creation and achievement. I couldn’t go wrong and oh God the happiness that came with it, what was almost a brightness, a light. Yellows and oranges and sunlight, warmth, freedom. I convinced myself I was holding myself back, like my feelings were being trodden down and told to shut up and what it left just made it seem like everything I was going through wasn’t worth it, not least with the addition of the sexual dysfunction that accompanies most antidepressants, I just wanted to feel something again. I wanted Me back. Or should I say the Me that nostalgia had invented after a few years had allowed me to forget it didn’t exist.

I refused to acknowledge the constant battle against the allure of a razors edge or seeking solace in the bottom of a bottle. I forgot how the elation gave way to anger as the need for perfection leaned towards frustration, taking every interruption or expectation to participate in the world outside of my own little world as a hindrance to the important thing I was presently a part of. The desire to escape and explore everything, to want an altered state of mind and new experiences and a different life. I wanted to create, and feel, and suffer, and live. I wanted the purpose I was sure I once had.

Despite all of the hopes I had built up for myself, I coasted throughout last winter. Energy and emotion I wished for turned into a void instead. My thoughts were sluggish, thinking coherently was difficult as each time I was having a conversation or thought of something it’s like it stopped halfway through, like a caught fish wriggling free. It took effort, concentrating on anything became a mammoth feat. I began to hate myself again, manifesting in everything from shame over the smallest things, feeling as though every minor misstep was a failure. Patterns of negative thoughts were a constant, taking any small event and picking it apart until a conclusion was found that I was worthless. The desire to self harm was there but aside from a few particularly bad days it was more of a macabre dalliance with the thought of it rather than the act itself. There was no biting need to vent or find some kind of relief because no pressure ever built enough, it was dull, blunt, a heavy weight rather than grief and chaos.

A big part of this period was hating the body and looks I had spent so much time and effort into learning to love. Love is probably too strong a word though I had always hoped to reach that point, I’d got to more of a passive acceptance. The weight I was so pleased with putting on after years of trying began to drop off during a period of sickness and I found myself focusing on it, obsessing over it, and starting to fall into old habits of wanting to restrict my intake of food, to get smaller, thinner. The acceptance I’d achieved dissipated as it presented itself as an avenue to try and regain some control. Under the guise of trying to be more healthy, to better love myself as I kept telling myself, I began to explore different foods, reading the labels of everything I ate, using more fresh and basic ingredients trying to cut down on processed food, eat more of certain groups and cut out others. I began to feel guilty if I slipped and to make up for it I would restrict myself further. I continued shrinking and struggled to balance the desire for self acceptance and my new take on old obsessions. I’m still trying to fight the urge to measure and restrict, but the control it gives when I feel I get it right is an odd comfort when everything else feels so uncertain and beyond me.

A lot of the lows changed come March when out of nowhere I suddenly started making plans. I woke up one day and wanted to sew. Then I wanted to move the furniture around, spring clean the house. I wanted to overhaul the garden and grow vegetables and giant sunflowers again. I had ideas for art projects, paintings. I wanted to go and see friends, do things, redecorate, cut my hair. I was a force to be reckoned with and everything felt so right. I remember thinking everything was calm and orderly. I spent less time online, I started sewing projects and creating recipes, I kept a diary. It seemed like nothing could go wrong. It felt almost as if everything bad was behind me, that the future would be brighter now, that things are in order and I’m healthier and it was all going to be okay after all. The yellows and oranges and warmth were here to stay.

Though I had a crushing dread in the back of my mind as I went about things, nagging at me that I’m setting myself up for a fall, I did all I could to ignore it. It must have been there because every time someone suggested that the future would be brighter a niggling doubt arose, but I didn’t want to confront it in nay meaningful way. I tried to play off the explosive anger as justified, the constant irritability and forgetfulness or flippancy as nothing. I was frustrated by the pain that was holding me back but I felt I had so much going on that it didn’t really matter because in the grand scheme of everything I knew life would now be it wasn’t such a big thing, was it? And life was so huge, so vast with so much opportunity, so many connections to be made, ideas to have, things to do. The irritability only grew as a result of my physical limitations and wasn’t helped by the excessive quantities I drank, in part to make the pain shut up and in part because it was just there, but the connection wasn’t made until much later. I had convinced myself it wasn’t the voice of experience and reason trying to get me to stop and think but instead an attempt at self-sabotage over the Now Okay life I was sure to have. To others it was obvious I was a mess, scattered and temperamental, I had spread myself far too thin and was completely unaware. Eventually it was bound to come crashing down.

I want to point out here that what I have written so far draws on memories. Looking back and trying to pick apart the moods, the thoughts, all of it I guess. There’s probably some bias in it due to the mood that I’m currently in, it peppers everything else so I can only imagine it would also impact on my memories and ways I’m expressing things. Writing of the low I am in at the moment will contain a lot more detail, I’ll also be speaking candidly about self injury and suicide ideation.

I can’t remember the exact point it all fell apart but it was perhaps 2 months ago, and with a violent ferocity. There was a few particular days I vividly remember during the swing, hazy ones where I didn’t feel here. It was as though I had taken a step backwards, out of my body, by about an inch, and while I could think it was difficult to really get words out or even connect with what was going on around me. I couldn’t take in what people were saying properly and forgot what I was doing a lot, getting easily confused. I was very calm but completely detached. I’ve had it to lesser degrees a lot as far back as I can remember, usually happening round the more extreme parts of my mood. On the outside I’m told I looked dazed, glassy eyed and not full there, difficult to engage with. Then what started as a thread of a few negative thoughts and odd thoughts of self harm one day turned into a full scale unravelling the next. A close family death and news that my husband had to undergo testing for cancer added to the weight. I couldn’t even take stock of all the ways that life was wrong. It all suddenly all dawned on me, everything, and I had no idea what to do. I couldn’t do anything, I can’t do anything, it’s was all out of my control.

I began restricting my meals further as some kind of way of regaining a balance but each time I deem myself to fail it just adds to the weight. A spiral of shame begins and even if I try to be mindful I just end up over-analysing and finding a hundred other things that are pretty terrible or set up ready to make life worse. Thoughts have been buzzing and chaotic, not really following particular stream of consciousness but changing all the time. One thing, then another, and it leads to another but nope here’s another and oh look have more. They itch, I want to tear them out of my head as they form an almost cacophony of noise inside my skull. It’s like every time I grasp at one another come along and bumps it out of the way before I’ve had a chance to look at it. Someone I spoke to recently likened it to them being put through a washing machine.

This time the low has brought something new. Voices in my head. I’ve had them before in so many ways, particularly as a teenager but not quite in this way. These they circle around like little whispers sometimes, they feel like they belong to someone who isn’t me but I can’t quite place why they feel that way. They don’t seem to feature often but kind of pop up every now and then without cause to tell me I’m worthless and ask who would possibly love me. They bring with them emotions; shame, despair, embarrassment, worthlessness, a feeling of being undeserving of love and a burden. The emotions are usually there to some degree anyway but it heightens or changes the nature of them.

The compulsion to injure myself has been a big part of this low so far. It had been around 2 years since this was last a feature and I left three deep gaping sliced in the side of my torso with a razor blade. I don’t know why I get so transfixed on the desire to cut but it’s difficult to stop thinking about. I’ve tried to stop it by giving myself other outlets. Drawing on my arms, punching myself and pinching until I bruise or bleed, digging nails into my arm instead of picking up the razor blades. It didn’t work. The scars I left 2 years ago are to be accompanied by more as these new gashes heal, and while I hope to fight it I’m still finding it hard not to obsess of the idea of doing it again. I found the cutting like opening a pressure release valve, in a similar way to how crying hysterically about something can make you feel a relief from your sadness. It has a calming effect that makes it a tiny bit easier to cope, even if doing it in itself is a sure sign of not coping. It’s not something I find myself doing on a whim, I obsess over it to the point that it’s too much, instead of just grabbing a blade and going at it, I ready a bowl of disinfectant, gloves, a fresh blade, paper towels for the mess. Steropads and surgical tape for dressing. It’s not until afterwards that the gravity of what I’ve done sinks in. Shame, regret, loathing.

Some emotions themselves bring up memories, things I’ve done or had done to me and want to forget, they get worse… Heavy, crushing. I can’t help but feel I’m a failure and even though I’m here, understanding this is not necessarily the ‘true me’, who I am, I continue to feel that way. This is one of the few places I can definitively draw a line, I can see it’s all illogical and have this notion that my awareness of what’s going on should somehow stop it but it doesn’t make a difference. I still ultimately don’t understand the point of going on with things any more, that everyone would likely be better off without me and that this is the best I could ever hope for in life. This, forever. Endless cycles that inevitably lead to misery. One day I’m certain it’ll kill myself anyway so why don’t I just speed things along?

The first time I considered suicide as a serious option I was 14 years old. It was shortly after a period of ill health where I had been bedridden. I was very out of it and had difficulty really moving much at all because of pain. It was not long after my pain symptoms had really started to make their mark and the flare up was agonising. A man I was seeing, an adult who I met online, came to visit and watch TV with me, quickly taking advantage when we were left alone in my room. At the time I didn’t really feel I had anywhere to turn and had fallen into a darker place than I’d ever found, I had no idea how to manage my emotions at all and often wanted to lash out or scream. It was a deep pit, right in my core. Like an emptiness that I could feel. I began not taking my pills, an array of painkillers and antidepressants in high doses. I kept storing them up for months, making sure I would have more than enough for a certain demise. A moment of clarity led me to throw the entire pot away, something I later regretted but couldn’t exactly do anything about. It was known I had them and I was confronted about it at a later date, something which heavily reignited my thoughts of it.

As with then, pain is a big feature at the moment, both emotional and physical. I never got over what happened and, while I’ve had some experiences since along the same lines, it’s that one which stuck with me, that I was most ashamed of and find myself thinking back to. Pain is impossible to ignore at the best of times, it’s always there to some degree, both neuropathic pain and joint pain. Sometimes one will be worse than the other, attack different areas of my body at different times and different ways. It’s always varying from awful to wanting to curl into a foetal position and die. In moods like I’m in right now it becomes hard to balance all of the elements of my health. Dislocations seem like a big thing, I sometimes cry over them and I have no idea why; I’ve already accepted my body is useless. The constant clicks and falls, the different pains and sensations. It’s the biggest feature in my thinking about killing myself. A few months of a lot of pain and I could save up prescriptions, wait until I’m alone of a day or evening and take a shower, leave a note on the door saying not to come in and to call someone and say what’s happened. I could take them all, tear apart my wrists or thighs for good measure. I wouldn’t have to put up with it any longer. At times it’s the thought of the act that I want. I want to die but I don’t really know if I want to be dead. Others it’s a longing for a void of existence, it all just stopping and having no consciousness, no care, no nothing. A permanent deep sleep where none of it matters any more.

It’s all going to go downhill from here physically, too, both in terms of pain and mobility. While I’m already very restricted my joints will deteriorate and there’s a good chance my nervous system will go along with it. When my nervous system goes they could insert a shunt or perform exploratory surgery to try and work out what caused the problems to appear and fix it. The unfortunate thing would be the success rate of such surgeries though, and for that matter what qualifies as success; ‘it isn’t growing’.

I’ve always had this thought in my mind, a pre-plan if you will, that one day when it gets too much i’ll end it. It could be pain, it could be mobility, it could just be that it all wears me down to a point I don’t want to deal with it any more. It’s a promise of mercy when the time comes it’s right. There are caveats though, that I must be in a good place, a calm place, reasoned and logical with a firm acceptance that this is right. I’ve considered making it that I have to decide during 2 good, clear headed, calm phases. Choose it once and then agree the next time. While macabre, this isn’t an unkind or depressing thought. It’s always been a calm thought, one I’ve held and explored for a very long time. It’s one of the reasons I’ve not acted on any plans I’ve come up with, for some reason it seems like an important promise.

I find myself grieving for a future I will never be able to have. I always pictured having a career in IT, perhaps doing art on the side. Now I need morphine and taped up fingers to hold a painbrush and my fingers can sublux from typing leaving the need for voice software. This morning at around 5am I was lying in bed, wide awake. I was restless and fidgety, also deeply upset as I was thinking over what to write in this, picking apart my own mind. I wanted to get up and paint, something dark in blues and greys, cold. I nearly did as I have canvases galore as well as paints, but I remembered how hard I found the last paintings and it felt like the desire just hit a brick wall, stopped dead, gone.

I’ve lost a lot to my physical health, almost everything that I love doing is out of reach. Pumpkin carvings, paintings swimming, sewing. That grieving for my future will hopefully one day dissipate or move into grief for the past, but for now i’ll have to make do with what I’ve got, treading water and trying not to drown.

I wish I could offer some words of solace to end all of this on given the seriousness and depth of the post, some message of ‘don’t worry, I’ll be fine’ but there isn’t one. It won’t be. While perhaps one day I may get relief in some of the areas that affect me, presently looking into the mental health side of things, I’ve accepted that my future holds an inevitable decline and while I’m not okay with it I also accept that I have no choice, it’s happening whether I like it or not.

Writing this has not been easy, I’m exhausted and drained. I had seriously considered not publishing it but instead considering it an exercise in self-exploration and to assist in helping to find out what it is that’s wrong. But on the chance it helps demystify mental illness for some, helps them understand the devastating impact it can have not only on a person’s life but personality and experiences, or helps someone find comfort that they’re alone, it’s worth it.

In all it’s messy and intertwined glory, this is my head, my life, me, not me, all at once.

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Please, don’t make our health your costume this Halloween

Illness is not a costume

Did I need to say that? You’d think it would be pretty obvious that to dress up as an illness many have to battle is pretty insensitive, outside the realm of what most would consider acceptable, no?

Apparently it’s not so obvious, as evidenced by a Greene King pub in Bournemouth who are soon to be hosting a Halloween theme night where people are encouraged to dress up as ‘deranged doctors, nurses, mental patients’. Edit: Greene King have stated apologise, saying it’s an unsanctioned initiative by the pub. They have cancelled the event on behalf of the venue and are sending staff on diversity training.


Thanks to stigma, something which is furthered by what some are considered to be light hearted novelty costumes  people with mental health problems are often portrayed as dangerous, scary, unpredictable, violent, prone to lashing out and even murderous. In previous years we’ve seen a vast array of them which are centred around the stereotypical ‘mental patient’, from ‘escaped mental patient’ to ‘psycho killer’.
The reality is that people with mental health problems are far, far more likely to be the victims of violent crime than they are to commit it. They are more prone to abuse, isolation, murder.

Associating mental illness to negative things is already helping shape the way that stigma towards people with mental illnesses manifests in our societies. Turning it into a joke ‘mental patient’ costume is to make real, bring to form the very real stigmas that we face and that make life harder for us.

A great example of how this view of violence permeates a culture is in the United States gun regulation debate. Every time there is a mass shooting, which sadly is many in the past few years, what’s the first thing people ask?

“What’s wrong with them? They’re obviously mental”

The NRA describe the issue as being one of sickness as do many others in the pro-gun side of things. The general line is “crazy people shouldn’t be allowed guns, stop crazy people”.
A few years ago someone in the NRA, I believe, went so far as to suggest a national register of those with mental illnesses in order to prevent future mass shootings. Oh, and of course they also used it as an opportunity to encourage people to get guns in case they come across a violent crazy person.

The association of mass shootings and mental health problems gets into a lot of people’s heads. When you’re hearing it from news stations around the world, in papers, on social media, it’s a hard association to break. It’s easier to accept that someone’s ‘out of their mind’ than capable of shooting a lot of people, but how many of those shooters have actually been found to be mentally ill? How many were motivated by something to do with a mental illness? Where are all the drives to encourage psychotherapy and prevent it from happening? Where’s the extra funding towards it?

While the US example has far more impact and has a far more sombre message, things like these costumes, novelty as they are, assist in compounding that oft heard message of ‘mental people hurt people’, every time it comes up in a TV show, in a book, it pushes it that little bit more. The stereotype is dragged out so much that a lot of people don’t even question it. A UK survey a while ago found that a third of people thought those with mental illnesses are more likely to be violent.. The more this message is broadcast and the more people who choose to listen to it, the more stigma people with mental illnesses have to deal with. The more people are scared of us, see us as crazy, see us as dangerous.

There are a lot of outfits and themes out there which don’t bring more misunderstanding and pain into the world, that don’t harm people who are already having to deal with some very heavy things. Please, use one of those. Don’t make our health your costume.

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Quantifying stigma: pitting the mental against the physical

Content note: Mentions ableism, mental and physical health stigma, gaslighting, fat shaming, eating disorders, death.

Raising awareness to the prevalence and difficulties of mental illness – how commonly it touches people’s lives and the stigma people face, the hardship and stress that stigma causes – is undoubtedly a good thing. When it comes to raising awareness of anything, we find it easier to quantify it’s severity by having a mark of comparison, and with mental health stigma the comparative gauge is usually ‘how we treat physical health.’

You wouldn’t treat someone with a physical illness the same way you do mental illness

This is one of the most popular messages you see doing the rounds when it comes to trying to raise awareness of stigma that’s frequently associated with mental health. We still see metal health as something shamed, words such as ‘crazy’ and ‘mental’ are still thrown around lightly to describe people who have very serious and very real difficulties, and when you’re in the grips of ill mental health those words, those negative messages, they can hit you hard. They can compound negative messages already going around your head and to say that is unhelpful is the Mother of all understatements.

We can see the hardship that the stigma causes, we can express it and we can explain how and why it’s harmful. We can raise awareness of individual illnesses and teach people what the different terms they flippantly throw around actually mean. What many often cannot see is that the above gauge so quickly leapt to for a measure of severity gives away our ignorance of stigma in illness and disability, as well as the parallels between the mental and the physical.

To sit and read social media, blogs, and columnists for various newspapers, people decrying the things mentally ill people are forced to face by a society that doesn’t understand, while steamrolling over the very real experiences you have lived, can be extremely alienating. If you have a physical health problem, chances are you have experienced almost exactly those same messages that you are being told you would never be subjected to.

“You just need some more fresh air, get out a bit more! You’ll be better in no time”
“You need to eat better, the key to good health is making sure you have a good diet.”
“You just need to exercise more. That increases your happiness too, it’ll help you get stronger”
“You need to remove stress from your life, try and relax more.”
“Do you drink enough water? You should try and drink 3 litres a day, there’s a lot that can be fixed just by doing that!”
“You should cut gluten out of your diet. Most health problems are actually rooted in the gut.”
“You should remove caffiene from your diet, you’ll never get better poisoning yourself with that.
“You need to think positively about it. Mind over matter is really powerful. You’ll never be better if you keep being so negative”
“You should try homeopathy.”
“It’s all those drugs you’re taking, they’re making you sick.”
“You need to eat small breakfasts every day”

The list of things people tell you will cure you – if you just try hard enough, invest enough time, put enough energy in, be more positive about, spend money on, ingest this thing, cut this out – is endless and you hear it all the time. People may not necessarily mean anything by it, they just want to help you somehow and giving advice is not only the easiest way, but sometimes the only way they can do it. Realising you have a health problem is like giving up control of a huge part of your life and it can be hard for those around you to accept that things are just as they are.

Whatever the reason for giving their input, what it feels like you’re being given this sugar-coated pressure, this nagging shame, it’s put to you as though it’s in the form of Good Advice but the message behind it is always the same thing. It’s you. By doing or not doing something, not doing enough, not trying, you are the root of all your ills. The underlying message is effectively blaming them for being sick.

One way you can see that underlying message compounded or remove any doubt as to it’s presence is when you explain to someone who has given you this Good Advice that it just won’t help. You won’t get better. Fresh air is not magic. You appreciate what they’re trying to do but exercise is not a miracle. They will sometimes give other, similar advice, or they’ll begin to tell you they’re just trying to help, how do you know if you haven’t tried it? Sometimes they may get increasingly defensive as if you’ve personally insulted them. You can told you’ll never get better if you have such a bad attitude about it, and that you’re not getting better is evidence of this over time.

If you have accepted the fact that you are ill and just want to get on with your life, your illness can still be a big part of that, and there being no happy ending is something a lot of people simply cannot get their head around, and your acceptance is deemed giving up. For a lot of illnesses, the expected outcome is not necessarily a good one and false hope is crushing, but in the face of the worst odds you are expected to fight until the end. You’re not supposed to get on with your life. “Maybe you’ll be the lucky one, there must be something, just do this..”

Sugar coated blame is just one form of all this. Did you know you can sometimes have doctors telling you it’s in your head? That you’re making it up? You can be told that what’s happening to you just isn’t possible, that you’re “crazy”, that you’re imagining it, that nothing is wrong at all. You’re told you’re making up all the pain, drug seeking, even that you’re too young to be in that much pain, or ill at all, unable to walk well.

“You don’t look sick” is one of the most consist things a lot of people with invisible illnesses get told. It’s as if your failure to fit the very mobility-focused disability chic view society has of illness, pictures of people in wheelchairs or sitting with blankets over their legs, being helped to walkers, nullifies your lived experience entirely. You can experience everything from an expectation to hear exactly how you’re sick in order to prove you are not lying to an outright denial that you’re sick, that you’re clearly faking it, you look too healthy as if that has some homogeneous visual quality.

Sometimes you’re told directly that it’s your fault, whether it’s true or not. Smokers with lung cancer or COPD are consistently reminded of the link between their health and behaviour, fat people are told every health problem under the sun is down to their weight, and you can see the parallels that arise when you see people with eating disorders told that their issue is vanity, people with depression told they’re just weak in character. Even people who are dying are routinely having it suggested that they’ve done it to themselves in some way. It can come up with bizarre and tenuous links through ignorance; told you’re being tested by god, it’s karma, blaming a use of medication in childhood for any variety of health problems, blaming a lack of breastfeeding, blaming poor diet when young, poor upbringing, bad schooling meaning you’re just not coping with what they see as “normal” health. ‘Broken’ families’, lack of a Father figure, too much TV, too much time in front of a computer, not socialising enough.

There is so much stigma around physical health and a lot of it is ignored, misunderstood, or simply tossed aside as flippant commentary you should ignore. It’s emotionally taxing and stressful, and it’s something a lot of people have to learn to manage on top of their health issues thanks to it’s prevalence in our society. You can’t ignore something that won’t ever seem to go away, not least because people so often wish to know “what you’ve done to yourself” at any hint you’re presumed to have a health problem. Over time it can drag you down and put you on edge, you start saying you’re fine a lot because then maybe, just maybe, it won’t come up. You can feel small and helpless the more you are told “you just need to..”, and over time as you’re ground down you start to doubt whether you’re really sick, whether you’re really just lazy, whether you’re really just mentally ill.

All of this is not to ignore that there are also some enormous crossovers with physical and mental health stigma. An expectation you’re depressed or otherwise mentally ill because “how on Earth can anyone go through that and not be?” The aforementioned being called ‘crazy’, imagining things, it all being in your head. If you are already diagnosed with a mental illness, it’s possible that a lot of other, unrelated, health issues get associated with it. Your lack of energy is your depression, investigation over, problem solved. Your pain is worse because you’re clearly not coping mentally, try and remove stress and just relax more. And equally mental health is ignored at times, “well of course you’re going to be stressed with all this going on” when really there is a deeper core problem that needs addressing. Let’s not forget, either, that many people who have physical health problems may also have mental illnesses. You have to navigate the stigma of not just each of them individually, but them both together as well.

Mental and physical health undoubtedly have their own individual issues attached to them, their own stigmas, and when you stand at the intersection of them both you see new ones arise. We can quantify the difficulties of mental health stigma people are subjected to without invalidating the incredibly harmful stigma that looms over physical health. We can explain the harm it can cause to individuals and to wider society, how it stops people from seeking help or ostracises them when they do. We can explain different terms and different illnesses, show that flippantly throwing around terms is belittling experiences people actually have, lift people out of their ignorance and show them that mental illness is not necessarily what they think. We can raise awareness without standing on top of those who are just trying to get through the same.

We can do better than this.

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Wholemeal fig and dark chocolate pancake batter

Pancake header

This is very easily my favourite thing of late. I’ve only recently tried figs for the first time and my immediate thought was ‘dark chocolcate’. If ever there were flavours which were made for each other it’s those. This hearty but light mixture makes for a perfect backdrop to those flavours, taking nothing away from them or overpowering them with texture or flavour. A friend of mine hit the nail on the head by describing them as ‘decadent’.

Makes around 25 medium (4-5″ across) size pancakes.


2 cups wholemeal self raising flour
2 tablespoons dark muscovado sugar
350g figs, finely chopped
200g of 85% cocoa chocolate
800-850ml hazelnut or almond milk
4 egg whites

Mix the flour, sugar, egg whites, and hazelnut milk in a bowl and whisk until a smooth battery consistency .

Mix in the chopped figs and chocolate.


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Sausage*, bean, and potato casserole

I say sausage casserole because that’s what I usually have it with, but really this is just the base of it so you can chuck in whatever you fancy!


Preheat your oven to 200C

  • 1/2 – 1 whole tin of chopped pork and ham (spam) cut into cubes, or a packet of bacon chopped up into bits
  • 1 large or two mid-sized onions, cut into chunks
  • 3 cloves of garlic, diced (or equivalent in garlic granules)
  • 3-4 reasonably sized potatoes, sliced
  • 1 tin of kidney beans, drained
  • 1-2 pints vegetable or chicken stock (I prefer oxo for this)

Layer the potatoes on the bottom of an oven safe pot and spread the kidney beans over the top of them.

Fry the onion, garlic, and cubed pork/chopped bacon in a bit of butter or oil on a medium heat until it’s browned and your kitchen is smelling amazing.

Layer the onion, garlic, and pork/bacon on top of the kidney beans and potatoes, spreading it about a bit for even coverage

If you’re having this with sausages or beef or something, then fry that up a little and chuck it in the pot too.

Pour the stock into the casserole pot until it’s just about level with the stuff on top, cover it and shove it in the oven at 200C for 1 hour.

It’ll serve 4-6 people, and you can add tomatoes and a beef stock to shake it up a bit if it’s left over and you fancy a change, or add other veggies, beans, meats, etc

With peppered chicken and spinach

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Predictable campaigns of misinformation: Musings on recent events

Blind justice

I’ve been having some thoughts on the recent announcement by David Cameron that he wants us to be able to ignore the European Court of Human Rights (ECHR) when we feel it’s not quite British to listen to them. Replacing the Human Rights Act (our incorporation of the European Convention on Human Rights) with something more British, because Britain.

I think I was a bit better prepared for this to all start coming up than most. The reshuffle gave away their intentions (lots of anti-European Union and in particular anti-ECHR people moved into more prominent positions within the government) and I’ve been waiting for them to begin crowing. They’ve kindly begun to oblige. While not verbatim, here is a summary: “Europe! Brussels! Rights of criminals! British law for British people!” and of course “Last Labour government! ” because who could forget that one?

It’s a predictable stance on which to run in the election, especially given the media have done a good job of stirring up a frenzy on that very issue for the past decade. This is a government who have amassed a remarkable amount of public ire for the damage they have done this past few years so it would take an incredibly emotive and skewed issue to stand a chance at the next election. What a stroke of luck that there happened to be one already, saving the messy business of fabricating one like in 2010.

I was, and still am now, very worried at how the media is going to handle it They have an incredible history of skewing what the European Court of Human Rights actually is and the benefit that it gives to us all. They wield enormous power over public opinion and have done nothing to show that they’ll be the slightest bit responsible with it, after all, why start now? They’ve already done a great deal to try and convince people that it’s not just rare cases that we should to, but that the entire system is poisoned and an affront to our way of life. When that kind of line of rhetoric is used for an election campaign, they’re going to go into overdrive.

The papers will be absolutely saturated with factually incorrect, highly biased, anti-ECHR stories the likes we’ve never seen! We only have to look at how they’ve influenced discussion on welfare, unemployment, low income families, disability, and other things by using the ‘scrounger’ stories to see how utterly horrifying it has the potential to be. Since the last general election, when the Tories used the ‘scrounger’, ‘fairness’, and other bullshit in their election campaign, we’ve been drowned in stories which paint disabled people as fakers, people on incomes so low they can barely afford to eat (if they even can) as lazy, the unemployed as unmotivated and selfish, people relying on foodbanks to eat as thieves and scammers.

By and large those reading it have been convinced. Disability hate crime is on the rise, people are supporting scrapping support to those who need it most, people believe it’s fair that people in social housing are being evicted. They’ve succeeded in pitting those on the low end and middle of the economic scale against each other in order to support their ideology of a smaller state at the behest of the public well being.

In the face of that kind of media saturation, how will Labour respond as pressure over the ECHR increases? If it stays in the headlines post-election (which I feel is going to be inevitable) how heavily is it going to influence things in government? It’s going to be enormously prevalent in discussion during the next 6 months and beyond, and a lot of my fears lie with how they’ll react to that media pressure. Public opinion will be at least somewhat swayed. Labour haven’t exactly shown themselves to be bastions of  integrity in recent years, changing their strategy to appease those sympathetic to Tory and UKIP anti-immigration ideas and policies, as well as the Tory anti-welfare ones. Some of their welfare ideas this past year have left myself and many others quite angry, showing they’d been influenced quite heavily by the lines of propaganda mentioned above. I would speculate as to how the Liberal Democrats will respond to all of this, but quite frankly I don’t feel there’s any guarantee that the promises of their leadership would be tangible enough to wipe my backside with.

With all the abuses we’ve seen in recent years.. From workfare, the treatment of disabled people, the unfair levies pitted against those in social housing, over half a million people being put in a position where they have to rely on foodbanks, to the holding in contempt of journalists who refuse to give up contacts, I dread to think how far things would have had the potential to go if we didn’t have the ECHR there. If the landscape can be so horrifically changed for so many already struggling people in this country with the ECHR, how bad could it be without?

I’m very scared for the future, and not just if this does end up leading to the Conservatives gaining power again, but also the impact all of this forced discourse is going to have on public opinion if it doesn’t.

If you flood the public arena with a message that something is bad and damaging our way of life for long enough with little counter, it doesn’t matter how factually skewed it may be, we don’t stand a chance.


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Lemon and ginger tea (concentrated jelly)

I’ve seen a few variations of this in recent months, from no-cook, to fresh-but-doesn’t-keep-long, to liquid, and none of the ones I’ve seen seemed to match my own little version that I started making a number of years ago, so here’s my take on it!


You’ll only need about a teaspoon to make a nice, strong cuppa. I personally love it with a bit of cinnamon and a chamomile teabag thrown in, though I’m told it’s really nice with black or green tea as well.
I’ve been asked why I use a jelly rather than a syrup and it’s simple: it’s less messy. I find that syrups require twisting of spoons, frequent wiping of the jar and any sides or surfaces it happens to touch, and somehow I’ll still end up making a mess. By adding a jelling agent, the chances of making such a mess get reduced significantly. I make it into a very firm jelly, but obviously go with whatever you prefer!
  • 4-6″ root ginger, peeled and cut into small cubes
  • 3-4 lemons, cut into slices
  • 150-200ml lemon juice concentrate
  • 2-3 heaped tablespoons dark muscovado sugar
  • 1 jar honey (I usually use 250g, but just go with whatever you happen to have)
  • Setting agent (gelatin, or there’s vegan alternatives like agar)


Have one or a few containers ready, large enough to contain however much you’re making (my last batch I added an extra two lemons and made up a 1 litre jar). Don’t worry about using enormously precise quantities or timings, most of what I’ve written here, as with most of my recipes, is just a rough guide and frankly you just can just wing it. I know I do.

Place the ginger cubes, lemon juice concentrate, dark muscovado sugar, and 1/4 of the honey into a saucepan and bring it to the boil, mixing frequently.
Once boiling, fold in the lemon slices and turn down to a medium-low heat. Keep them simmering for ~15 minutes.

Take the pan off the heat and thoroughly mix in the remaining 3/4 jar of honey. Follow the instructions for whichever setting agent it is you’re using and add that to the mixture. Pour the mixture into your prepared jars and leave to cool down before sticking it in the fridge.

It can be kept in the fridge for 2-3 months. When you want to use it, just take a teaspoon of jelly and mix it with hot water, herbal tea, or how ever else you fancy it.15233301196_f8ebf01090_h

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Cooling banana & peanut butter dog treats

As the temperature is once again rising, and I’ve already covered banana and peanut butter milkshakes for the humans, I figure it’s only right I share a similar cooling treat for the dogs!


  • 1 bunch of bananas (you can sometimes get them reduced to clear, which are then super cheap and would be fine for this!)
  • 200ml water
  • 1 pot of peanut butter (I use a pot of tesco value as it’s super cheap and the dogs seem to love it all the same)

Get a tray suitable for freezing that’s roughly 6″ x 8″ (and obviously ensure you have the space in thefreezer for it!), line the base of the tray with greaseproof paper.

Take the bananas and, along with the 200ml water, either mash up them up with a fork/potato masher or place them in a blender/food processor. Depending on what you feel like, you can leave it a little lumpy or carry on until it’s completely smooth. It doesn’t make a difference which.

Pour the squished up banana into the prepared tray and place it in the freezer, leaving it there until completely frozen through. Once the banana is frozen, and still leaving it in the freezer for the moment, it’s time to move on to the peanut butter layer.


Empty the jar of peanut butter into a heat-safe bowl and place it into a larger bowl or a saucepan filled with hot water. Once the peanut butter has warmed up a good amount, melting into a consistency that would be ideal for spreading, take the banana layer out of the freezer.

Have a spoon in your hand ready, as the peanut butter will only stay spreadable for a short time!

Pour it over the banana layer and immediately spread it out using the back of the spoon. Once it’s been spread out, place it back in the freezer to cool the peanut butter layer, and refreeze the banana one.

When it’s frozen through you can remove it and, using a hot knife, scour lines into the top which will make it easier to snap pieces off. If you’d prefer (and this is what I do), cut it into cubes and put back in the freezer in a storage container. This way they’re fumble free and ready to use whenever!



Fishy ice cubes
Method one:

Another that my dogs, as well as rats, absolutely love is ice cubes with a hint of fish. If you use tinned tuna chunks or steaks, be sure to get them in spring water (it costs about the same in most brands). Drain off the water from the tin into a jug and also mix in 1 small forkful of the tuna itself. Top the jug up with water to whatever level you think you might want (it only needs a little hint of fish, so you can get up to as much as 1 1/2 litres). Pour the tuna/water mix into ice tube trays and pop them in the freezer. Once they’re frozen, just take them out whenever you want to give your dog, cat, or rat a little treat to cool them off.

Method two:

At most supermarkets you can get some really cheap, frozen ‘white fish’ steaks (usually pollock). When you want to make up some cubes, simmer one of the steaks in water on the hob for a short while, before mushing it up with a fork or placing it in a blender. Top the water up to the amount you want to use, and just like with the tuna cubes, pour into ice cube trays and freeze.

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