Art speaks for us when we are without words

A friend recently went through a huge ordeal, their kiddo had been suffering from debilitating headaches and was suddenly diagnosed with a brain tumor and scheduled for surgery.

I live on the other side of the world. You want to be there, to hold hands and make food and crack jokes and bring tissues. Everyone feels helpless and mute.

The surgery was a success and the long rehab is going well, albeit tough. I thought about the workshops I’ve run with people who’ve been marginalised and harmed and ignored, the power of a zine to bring together deep insights and bypass all the rules and blocks and limitations that inhibit us. So I mailed a gift pack. An example zine of my own, a brief set of instructions. And a zine I created based on online photos of the experience.

This is one of the simplest styles, a single piece of paper, cut along the middle, folded into a small booklet of 8 pages.

Sydney sent me a zine in return, which was beautiful and made me cry. These moments of connection are precious and healing. Art can help make it possible. I hope you find a way of reaching out too.

Parenting with chronic illness

Each gallbladder attack I have is taking longer to recover from. My fibromyalgia flares and I feel like I’m recovering from getting a good kicking. I recently learned that I’ve been cutting too much fat out of my diet to try and prevent extremely painful biliary colic episodes. The extra low fat diet left me with headaches, exhaustion, foggy brain, and chronic pain. Bumping my fats back up has been quite magic and I’m feeling much better. I’ve been scheduled for surgery to remove the gallbladder next month.

Image description: A young child on a park swing. There are trees, lawn, and bark chips. A small green bike is lying on the ground by the swing.

In the meantime I’m muddling along. I used to be so afraid of this place: sick and trying to parent. It is hard. It’s really hard. I’m so incredibly fortunate to have good people around me, that network I put effort into building has saved my life. It saves me when I can text a friend in distress instead of crying in front of Poppy. When there’s someone to pick Poppy up from the ER so I can be treated. When our daycare provider lets me arrive late while I try and coordinate a crisis. My world has flexibility, care, accommodations that ease the sharp edges of my limitations and soften the harshness of the things I’m dealing with.

This creates capacity I wouldn’t otherwise have. So rather than merely the nightmare stories I feared, mostly Poppy and I muddle through. Rose takes her so I can rest or nap. I walk her to the park so she can ride her bike. We snuggle under a blanket with a hot water bottle and watch a movie together. We do crafts or painting on the dining table. She plays in the back yard while I hang washing.

I have a collection of low energy/high pain ‘tough day’ activities like this I can enjoy with her. And I’m still working towards the lower daily effort/systems and routines/life on the easy setting changes I started making last year so that my home and work is efficient, sustainable, and frees up as much energy as possible for the things I’m passionate about – such as parenting, care giving, socialising, adventures, and creativity. With thought, planning, and support, it’s actually still wonderful to parent even in a rough health time. I’m incredibly fortunate and I love her to bits.

Love, by the water

Endometriosis, adenomyosis, PMDD, and PCOS is an extremely unhappy combination of troubles. For me it means very heavy, painful, unpredictable periods that often trigger severe depression and sometimes suicidal distress.

I’ve spent most of the last 2 days in bed with a heat pack. Today Rose took the lead and set up a beautiful family trip for us all. She made savory muffins and took us all down south to a beautiful beach for the afternoon. I went for a gentle walk in the surf, Poppy collected rocks and shells, and we all enjoyed watching a seal frolic in the light rain.

Image is of Poppy, aged 3, wearing fabric rainbow butterfly wings and running along a beach.

It was so joyful and relaxed and a safe space to just be. As the rain fell lightly into the shallows where I walked I wept. My heart has been full of doubt and confusion and heartbreak lately. Watching the light catch the water and the foam on the sand, I’m so grateful.

One of the things I fell in love about Rose was her ability to create these beautiful adventures: inexpensive, simple, and so connected to the moment and the environment. I’ve often yearned for these things but when I’m sick or distressed I struggle to arrange them. My initiative is paralyzed, so I yearn but cannot act. I recall many days when I lived in my unit by the beach, longing to go down to the water and unable to. I could never have made it to the beach today, but with her doing all the heavy lifting I could be swept along to something beautiful and nourishing. I fall in love all over again.

Finding Ways out of Burnout and Overwhelm

Poppy and I went adventuring in a creek recently. It was so peaceful. There are struggles and difficulties all around, then there are these islands within it all that are so precious, where everything is still.

I clear a space and ignore my phone. No multi tasking. The curse of the freelance life – work creeping into every waking moment, is deliberately put aside. I don’t problem solve, plan dinner, handle admin. There is a rare clarity, ice clear and deeply refreshing.

Since I last burned out a couple of years ago, I’ve been quietly exploring a private project: what creates overwhelm, and what reduces it? Burn out is bigger than overwhelm, but for me it was the biggest and longest issue I had to deal with. I see overwhelm everywhere, not just at work but in everyday life, most especially for parents. It’s often framed as part of various mental illnesses and disabilities, but it’s such a common and difficult experience I feel it needs its own name and space to be understood.

For me, overwhelm is a chronic state of exhaustion, scattered thought, poor concentration, emotional intensity and changeability, and inability to grasp or manage tasks.

Reflection

I’ve been borrowing ideas from many sources, and using my own therapy as a kind of compass to treat my own overwhelm. I try things out and notice if my overwhelm deepens or eases. I’ve found reflective journaling is ideal for this. Each day or two I journal and notice what’s helping and what’s making things worse. I get an overview that’s nearly impossible for me to find any other way.

Some days when my overwhelm is high, I can barely walk into my shed. It’s way too much to handle, a million things all needing organisation I simply don’t have and I feel such panic that even opening the door makes me want to cry. Other days when my mental space is going well I can walk in and my mind is clear. It’s really not so bad, just a few bits and pieces. I can see what needs to be culled or sorted, packed better, given away. It’s so manageable. The difference can be startling!

Trying harder doesn’t help

For example I’ve found overwhelm is often embedded with false beliefs about productivity – that doing more and working harder and longer are essential to productivity. So my intuitive solution for the early signs of overwhelm (one of which is reduced productivity) is unfortunately to do a bunch of things that are likely to make it worse.

As counter intuitive as it feels, rest, doing something completely different, and setting aside proper time to deep dive instead of scattered multi taking are all very useful for productivity.

Understand the weight of the invisible mental load

One of the challenges about burnout in life rather than work is how difficult it can be to get a break from it or even see it clearly. Some of us find a lot of our work isn’t only unpaid but unrecognised, even by ourselves. We feel exhausted but can’t name what we’ve done all day, can’t take time off but don’t use the concept of being ‘on call’, and end up fitted to the gaps in the somehow more important activities of study or formal paid employment being carried out by those around us. Being able to notice what we do and who we do it for can be essential to recovery. I have found simply tracking my time has been eye opening in terms of things like how much sort work I do for others on a daily basis. This isn’t a bad thing – unless I don’t factor it in. This is a very interesting article on the topic of invisible mental load.

Executive function capacity is a limited resource

I’ve also found it useful to consider ideas around ‘executive function’ from the autism community (here’s a great post about an adult autistic’s perspective on his struggles with executive function limitations). Executive function issues also turn up a lot for folks with ADHD, trauma, and dissociation. They relate to our ability to plan, sequence tasks, keep track of time, and prioritise.

Many higher level brain processes are limited resources. If I’m living such a chaotic life that I need to use a lot of thought to plan hanging out my washing, that’s a lot of capacity being used up on tasks of daily living. Routines, structures, and rhythms are ways I can take those tasks out of intense intellectual activity and into habit, which is largely mindless and takes little mental energy. (which can help explain why some folks become very wedded to routines – if you have limited executive function your routines are your safe way of keeping life going)

It’s the same process that makes driving an intense intellectual process for a new driver, and something that can be done on autopilot for an experienced one. Autopilot frees up capacity for other tasks, or mental rest.

The impact of decision fatigue

Decision fatigue is also an important aspect of overwhelm, and one that burdens those of us in poverty much more than others because poverty involves constant trade offs – and these are the most mentally exhausting decisions we make, between two or more important things when we can’t have both (like food or medicine). There’s a great article here that unpacks this more as well as a lot of interesting research behind the ideas.

Sometimes the job is impossible

Overwhelm is often a response to a catch 22, or an impossible ask. Parenting through adversity of any kind often involves trying to accomplish very challenging tasks, such as supervising very young children while severely sleep deprived or ill, or trying to provide quality childcare and household management simultaneously,or meeting the physical, social, and emotional needs of several children of different ages/needs, at the same time.

I sometimes find it helpful to think of parenting as if it was a job, and thinking about what my union might be asking for when they want better, safer conditions. Do I need less tasks? More time? More skills? Rest? Support? All of the above, of course, but some weighed more than others, and some easier to find solutions to.

When I ask myself ‘What’s usual in thr paid versions of this role?’ sometimes the pressures and catch 22s emerge in a way I couldn’t see before. It can also help me to see and articulate difficult concepts such as I love being with my kids but I hate trying to create fun safe times together and also sort out all the washing. When everything merges together it can hard to figure out where things are actually working because it all feels awful.

‘All or nothing’ is a game you always lose

Another thing I’ve been finding helpful is to watch out for the ‘all or nothing’ mindset that kicks in when I’m overwhelmed. I know I need a break and I’m dreaming longingly of the weeks away on camp, but turn down the opportunity to have ten minutes to myself because frankly, what’s the point.

I have been finding it difficult to make ‘wild time’ since the kids came along. I miss my long late nights writing poetry, driving under stars, and sitting by the sea. For the last month I’ve experimented with 10 minutes by myself in the bedroom each night, with candles and my journal. Part of me hates this – where’s the spontanety? The stars overhead? The long hours? How can wildness be scheduled?

That part is right, it’s not the same.

And yet, it’s better than not doing it at all. It’s still a candle, a bone pen, a sacred space. It might be a snack instead of a full meal, but it still nourishes my soul. And a nourished soul speaks its needs louder, is more playful, resilient, and certain. It keeps seeking a heartful and passionate life. 5 minutes of painting is better than not touching the brushes for 5 years because you don’t have the time.

‘Freeze’ is a type of threat response that looks like overwhelm

I’ve found helpful with overwhelm to understand what scares me. This is much harder than it sounds. Sometimes I know I’m scared, sometimes I just get sick, or develop new pain or symptoms. As someone with childhood trauma I have the common but deeply frustrating experience of sometimes learning about my feelings through problems with my body and health. This means having to interpret the myriad of random symbolic issues that turn up. It can be a slow and frustrating process.

Other times I’m well aware I’m stressed, panicked, frozen, blocked. But I often have little idea why or how to get past it. Why is it that some days emails make me freeze and are impossible to reply to? I’m sitting at my desk in tears, humiliated and full of frustration and self loathing, but I cannot make myself do the un-doable task. We’ve all heard of flight and fight but are less familiar with freeze. If you are scared and don’t feel up to a task you are facing, some of us freeze and shut down.

Overwhelm can be a response to abuse

Not being able to think straight, remember, plan, or use higher mental facilities around an abusive person has long been recognised as a common problem for people being harmed. Making plans away from them is often essential because deciding what to in the moment can be impossible. There nothing wrong with you and it’s not unusual

It’s also not uncommon when the abuse is internal. For example, if I’ve often used a ‘stick’ to motivate myself with, forcing compliance even when I’m frightened, tired, or overwhelmed, using meanness and bullying to push myself through hard tasks, I’ve set this scenario up. Overwhelm at some point is as inevitable as a plant wilting without water.

Empathy is restorative

Making safe spaces to deeply listen and empathise with myself has been crucial. I’ve been working with an art therapist on this, instead of trying to push through or problem solve, instead to deeply and non judgementally listen. It’s harder than it sounds!

Deliberately seek the opposite

There are many opposites of overwhelmed such as calm, content, flow state, and confident. Some of them will resonate as more important to you than others, and you can explore more about those ones.

For me one of the biggest costs of overwhelm is in my confidence, so a side project that’s developed out of this one has been: what builds my confidence? I’m finding resources like this TED talk insightful. Repetition builds confidence which is useful to be aware of given how often I work at edge of skill, seduced by the appeal of a challenge. I adore challenges but I’m also anxious, vulnerable to imposter syndrome, and discouraged by failure and rejection. Learning to pull back on the challenges a little and build on more successes is helping greatly. Intentionally working to reduce my overwhelm this way has been incredibly helpful for me.

If you are struggling with overwhekm or care about someone who is, take heart. I hope there’s been some useful food for thought here. Our interdependence is invaluable in situations like this. Someone we can swap scary tasks like booking each other’s dentist appointments. Sometimes the one with more executive function can help break down a task or sequence a series of goals for someone struggling. Many articulate people with these challenges are sharing their strategies so others can borrow and build on them. You can tweak and change and develop things so that the overwhelm eases and you can think again. Best wishes.

Love amidst pain

At times when I’ve been very broke, I’ve felt that a troubling and difficult to name challenge that has been not the obvious stresses – affording bills and medical care and food, but a subtle one. Judged according to choices it’s assumed I’ve made, my life, my clothes, my presentation fits me to a standard. If there’s only one pair of jeans in the op shop that fit me, their cut and colour says little about me except my lack of choices. When I’m with others who’s choices are also constrained, this is understood, and we envy each other when personal taste isn’t inhibited by limitations. It’s a joy when we can forge something close to our sense of self from what we have.

Today I have been resting. My mind is burned out trying to understand some things that are extraordinarily painful to me. I have read and watched movies and curled up on the couch under a blanket. The weather is glorious, late summer and soft sunshine. I am recovering from a horrible head cold that has made my whole body ache. And I am thinking about my life not in an abstract sense as if I could have done anything, but from within the constraints I have faced. The long and terrible illnesses, the homelessness, the loneliness, the terrible suffering and self loathing I am still recovering from, growing up queer and unsafe. I think about the cards I was given and how I have played them and I am at peace. I have an incredibly beautiful life. I adore my family. I have navigated such heart rending and terrifying challenges to be here and to love the way I do from a heart so starved and shattered. It is so far in many ways from what I wanted or hoped for. But it so glorious given how lost I could have become. Queer and Christian can be a death sentence, and when I return to my old home at times, I can see myself on the floor of the bathroom like a ghost. I am curled around myself screaming silently and begging god to undo what I am. I have faced the absolute terror of hell and exile to stand here today. I have faced suicide and self harm. I have faced a loneliness so deep and profound that it felt like it was erasing me from the inside out. I have navigated multiplicity and psychosis, caring and needing care, the loss of friends, the heartbreak of not finding my place in employment.

I would not have chosen this path. I would never have chosen homelessness, or chronic pain, or my string of failed attempts to haul my life back onto the track I was aiming for. I would not now choose our vulnerablity, our financial insecurity, our public housing. I aimed very high and where I’ve landed so far, it turns out, is incredible.

I adore my daughters with all my heart, and the joy in parenting them surpasses anything else in my life. My beloved Rose and I are restored to each other after the terrible strain of last year. We are learning that knowing each other for 6 years does not mean we know each other. That love is in asking the questions and listening closely to the answers. The hand reached across the gulf of miscommunication and expectations. There’s so much love here.

Yesterday I went to a wonderful talk by local artist/illustrators about how they navigated their work while raising young children. It was wonderful and I learned so much. I also realised that their process was only fitted around children, while I was trying to build mine around illness and disability and many other things. It has not been easy and yet I am finding a small slow path.

Yesterday I went to the funeral of someone I had not known very well, the husband of a dear late friend. I was not sure I would be able to go. Death is not something I am reconciled to since I had my terrible breakdown. I felt angry and humiliated by my vulnerability to it. Rose eased me into finding the thorn in my paw. I was terrified of my secret, nagging judgement that his life had been wasted. I recalled heartbreaking conversations with him about his lack of the spark of joy, his envy of my passion. He too, faced many challenges in his life. Only when I found this fear could I see that my block was little to do with him, but my own secret terror that in some way I couldn’t even find words for, my life has added up to nothing.

So I went to the funeral. They read a poem by my late friend. It hurt so badly it felt like I was dying for a time. My heart broke for his friends and family. My heart broke for my friend, and how hard friends can be to come by. How irreplaceable each of us are in the web of our lives. I thought of the millions of people in the world and how easy it is to be lonely. How hard it can be to listen as deeply and carefully as Rose and I are learning again to listen to each other. How life is neither all triumph nor all loss. I listened to the heartfelt eulogies by his friends and saw both his pain and his life in a softer and more loving light. I thought about my friends. I thought about how I would be remembered if I died today, the way I would not want my sorrow or my struggles to be the focus, but my love and the people and things I have loved and tried to learn how to love well.

I went to a therapy appointment yesterday to open in a safe place a big painful box about family and history and abuse and relationships. I cried so hard I couldn’t breathe or stay seated on the couch. I couldn’t stop. So much love and so much pain. Agonising dilemmas that are sunk deeply into my skin like razor wire. No easy answers or lights on my path.

When I left I splashed cold water on my face and hair and wrists. I took a cold drink in a small paper cup and I staggered carefully to my car. I sat with my journal in my lap and no words until the urge to vomit passed. I drove home carefully into the sun, taking the route with the most shade cast by trees, and crept into my home to hold my little girl and a hot water bottle for the rest of the evening.

Today I look at what I have built, what I have made of my life with what I’ve given, or found, or forged, and I am content. It is humble but no secrets rot beneath the floor. It is glorious. I am limping and dancing, both. There are many beautiful and wounded people I have built relationships with, of one kind or another, tended these like gardens that need work and effort and understanding. Learning how to listen, how to speak, and how to endure. Gratitude for those who came before me and made my world possible, those who changed my world so that queer people were not vile, those with disabilities were not repulsive, trauma was not a weakness of character, and that those who were sick or poor should be given a wage to allow them shelter and food. I remember their sacrifices and their work and I am thankful. I remember them when I choose to make sacrifices and to work towards a better and kinder world for my children and their children. There is so much love here.

Dancing with depression

I’ve been feeling raw and bleak at times lately. Today I was diagnosed with PCOS (a hormone condition) and PMDD (a sensitivity to certain hormones that causes a bunch of symptoms – my biggest struggle is severe depression on day 1-2 of my cycle. Given I already have mild endometriosis and severe adenomyosis, it’s making Poppy feel like a miracle and I’m holding her pretty close.

I’ve also had a severe digestive virus and a UTI/bladder infection which has knocked me for six.

It’s been a rough 6 weeks for me with many illnesses half of which have me quarantined and infectious. In between illnesses I’m happily enjoying downtime, and sunshine, and art, and chasing up friends for some much needed connection. I’m also about to be back in my studio working on a project dear to my heart which is exciting.

I’ve been rereading Lost Connections by Johann Hari recently which is a beautiful and well thought out book. Strangely enough in the light of it I’m about to try intermittent dosing of an antidepressant to see if it might help me manage the one two unpredictable days a month my head caves in. I don’t have a lot of treatment options left to try.

There’s a strange path I’m finding myself walking. Sadness, grief, loneliness all need to be heard and made space for. Given voice and listened to deeply. And the mind and heart also needs tending to ease them. It’s not a desperate fight against depression. It’s being open to it and the messages of it. Accepting and attentive and compassionate. While also working to be restored. The duality is strange. Burdened by a culture that sets us up to fight with our own mind and tries to numb our alarm systems instead of meeting needs and down regulating over sensitive alarms, I’ve swung far in the other direction of accepting whatever comes. Blown about on the tides. Actively working to change my state of mind or feelings is, in a way, as odd to me as most people find accepting and listening to them to be.

I have been lonely and sad at times lately. Two of my close friends are struggling with severe suicidal feelings. I miss spending more time with them. Did you know loneliness makes you much more susceptible to catching sicknesses? I’m reaching out when I can, being part of things. Glad for many good folks around me. Rose is, when she’s well enough, taking good care of me. We’ve been doing a lot of work to listen and empathise and reconnect and we’re feeling so much closer.

I’ve taken on temporary admin role in a beautiful online friendship group in crisis. I love groups and I’ve missed my groups lately. I’m hoping I can help restore some safety and sense of belonging.

I need some Narnia time out in the wilds, feeling the universe as a poem. I need my hands in earth, my feet in the woods. I need meaningful work and hope. I have a few more weeks before uni starts up again. I got a Distinction (84) in Epidemiology (honours level) so I’m feeling good about that, but I may drop a class to ease the stress if the health challenges continue. There’s a future there for me.

I’ve been struggling under the burden of several complex and sensitive old abuse issues for folks I love that I can’t speak about. A few recent days I’ve allocated to work or a Poppy adventure day, I’ve found myself spending most of it crying and calling helplines instead. I feel overwhelmed by the responsibility of navigating these relationships and conversations safely, compassionately, and fairly. Hopefully I’ll find a new support person soon.

In the meantime, in between sickness and sadness I watch the sun through the leaves. I touch Rose’s fingers, how soft and beautiful they are. I comb Poppy’s silky hair, listen to her stories, keep house.

And it’s the other way around too.

In between the most beautiful and tender life I suffer painful moments of sickness and sadness.

They weave in and out of one another. I’m here, hurting, and bursting with love. Holding it all to my heart.

At the HealtheVoices Conference

The flight was beautiful, I journalled and watched the clouds. I’m resting, soaking it in.

I’ve been to the Museum of Modern Art and wept on the floor at Hoda Afshar’s 2018 exhibit Remain, about the experiences of refugees on Manus Island. It’s stunning, and as much as I love public health and all the many things I do, it makes me deeply glad to be an artist and to want to stretch myself further, build my work in these spaces of such vulnerability. This is our history, being preserved here, the forbidden stories being told. Art can do that and I’m so in love with it.

Walked in the sunshine with new friends.

Washed the day from me, and slept.

Put on a beautiful dress I’ve never had the chance to wear, (non binary, gender queer people can wear dresses too if they want to) and shared a fancy dinner.

It’s a delight to be here. The alienation I’ve so often felt – in galleries, hotels, places inhabited by people with wealth, isn’t so present today. This is not my world, but I don’t feel at war with myself being here. It’s okay to visit. There’s no rage or burning anguish. I’m able to take in the pleasures and enjoy the luxuries. I’m curious and listening. Other people’s stories and experiences are always so interesting, the overlaps and the gulfs between us such rich food to share.

I keep thinking of the Pt Lincoln conference where I slept in my van in the national park because the bare hotel room stressed me. How hard it was to be there, how excited and exhausted and far beyond my own limits I was. The beginning of my breakdown, falling into the void. Months of anguish to come.

I can stand in galleries now and I’m not in burning pain. I can sleep in the hotel and enjoy the smell of the hand soap. I can walk into and out of this world without losing myself. I’m not numb and I’ve not gone native. I’m just no longer responsible for everything that’s wrong with the world.

I cried a little during a video call home with Rose and Poppy. It’s my first night away from her since she was born, and alone in my room is very alone indeed. I can hear the building air conditioning, and the gentle rumble of the lifts, but no people. I feel insulated like a single bee in a vast honeycomb. If I can’t sleep I might go sit downstairs in the bar to be near to people.

Next time I so want to see the National Art Gallery too.

Tomorrow I’ll be listening and presenting. I wish I’d brought my loom work project, I want to do something with my hands. There’s too many people to talk to, I sit in the middle of it all and let it wash over me like a river. Some of it I can catch and touch and the rest will flow past.

It’s hard to sum up what I do, my advocacy work across many domains. I haven’t used the phrase ‘multiple’ yet, I will tomorrow. I feel tired. I remember being at a conference 8 years ago and discovering 2 other multiples there, the joy I felt! Some people here have a very clear message, a very specific advocacy focus. I admire that. I think in some ways my work around adversity is that for me, but there’s other threads I’m still finding words for.

I miss my little girl.

I love this life. There’s so much joy in it. I’m glad to be here.

Disability and Employment

Some weeks ago, I was asked if it would be okay for Julia Gillard to quote me in a speech. I said yes, and she described me as ‘erudite and charismatic’ and quoted from my video with the SA Mental Health Commission about Mental health in the workplace, in this speech to the Diversity Council of Australia. Which is pretty awesome.

Julia is the Chair of the Board of Directors for Beyond Blue, and they were pretty keen on the message too. CEO Georgie Harman got in touch to share the video and invite me to speak on a panel at the Disability Employment Australia Conference #DEA2018. So today I trundled off to the Hilton to meet some new people.

There were some seriously awe inspiring folks there showing us what can be achieved with a disability. Which is inspiring and fantastic, if not intimidating. Conferences tend towards the shiny. So I did my thing and was vulnerable in public. I spoke about failure and shame. I told them I was possibly the least successful job hunter in the history of the world, and gave them a 5 minute run down on hundreds of job applications, rejections, sad experiences with DES providers, a microbusiness cert 3 for people with a disability where we were repeatedly told business is easy (spoiler alert, it’s not), NEIS, freelancing, jobs that evaporated after I applied, jobs that evaporated after I’d been successful at applying, training as a peer worker and still not being employed! It’s no bad thing to have someone speaking from failure. There’s so much you miss otherwise.

I was honest and passionate. It was hard. I thought TEDx was the most exposed I would ever feel in a talk but this was bizarre because it’s still something I’m wrestling with. It’s raw. Career has been my holy grail my whole life. I don’t come to a Disability Employment Service Provider for a job, I come for an identity! For a sense of purpose and meaning and connection. So I don’t have to be a bludger, a leaner, a long term unemployed, a hopeless case, a complex needs client, an underachiever, a dropout, a misfit, a failure anymore. I come because I don’t want to be poor for the rest of my life and I don’t want my children to be poor. I come because I’m so tired of pity and shame. I want to be a real person with a name tag and a business card and a place in the world.

So I talked about adversity and diversity and the complications of our lives where we don’t fit one box. Multiple intersections of difference and disadvantage, complex diagnosis, chronic pain, queer identity, homelessness.

We were asked how to motivate people to want to get help into work, and I said of course we want work – make it safer and make it more dignified. I talked about how essential work is but how risky too. Job hunting can put our financial safety nets at risk, can expose us to bullying and toxic workplace cultures, and can put more failure and rejection in front of us than our mental health can cope with. I also talked about how out of reach work can be during crisis, that often my personal definition of success is painfully simple – everyone I love is still alive at the end of the week.

I said that I’ve learned that I can’t successfully job search when I’m drowning in shame, terror, and rage. A bit like dating, I need to be okay with myself as I am. That means we all need to understand just because I don’t get paid, doesn’t mean I don’t work. People like me work a lot. We are often well suited to informal roles that fit around our disability. We run unpaid support groups on social media, we raise kids, volunteer at school, help out friends, care for family. We often create our lives in the gift economy, and transitioning to paid work is a very different culture. I shared how I’ve needed psychological support to help me see that having to make hard choices – like caring for a family member in crisis over finishing a degree, doesn’t mean I’ve failed.

I shared how many folks like me wind up freelancing so we can navigate our disability, and what a baptism of fire that is for many of us. I shared about the amazing Freelance Jungle and how essential that support has been to me. I talked about how changing my focus from what skills I want to use, over to what business model suits me best, fits around my limitations and causes the least stress has been far more helpful for me. Finding my own way of using skills that more closely mimics the informal work I do fits so much better than the rigid 9-5 model, or the huge, impossible to schedule projects that take years to finish and pay. It’s not about the skills, it’s about how the work is done and how well that fits. So I’ve moved away from project based work and back to gigs – short term, easy to schedule, and much less stressful for me. I mentioned that there’s a certain level of absurdity about funding an organisation to help me find work instead of just hiring me.

It was stressful, fun, exhilarating, exposing, and surreal. There were many interesting people to talk with, which I greatly enjoyed. My anxiety was pretty off the charts at times, but that’s the nature of that kind of personal work.

Georgie gave a fantastic talk about how we need to take care of our staff and our workforce too, to lead by example and prioritise mental health in the workplace. She was a strong advocate of the value and worth of people with lived experience. We both promoted the value of peer work in the disability employment context: that if you have never seen anyone do what you are trying to do, that is a very large gulf to bridge. People who share their experiences – the successes and failures – give us so much richness in figuring out our own paths.

So I hope I held a space for the human experience of disability and unemployment. There was a great deal of passion and sincerity from the people I spoke with. I was glad to be included.

 

Difficulty settings and disability

I have thought often lately, about the idea that some people seem to do life on a harder difficulty setting than others. I have been fiercely contemplating how I might be able to lower the setting in my own life. So far I have decided I am going to

  • Replace the jungle of mismatched containers in my kitchen with a set of no more than 4 sizes that stack with matching lids
  • Dig out most of the front garden, replace the shrubs with low maintenance succulents, and mulch it
  • Quit project based work and replace it with a smaller amount of gig based work
  • Meal plan for lunch and dinners
  • Have cooking days and freeze portions
  • Schedule all the chores
  • Create a nest space in the home for anyone coping with overwhelm – bed, laptop for movies, books, headphones, toys, blankets, Lego, and air conditioner
  • Limit Poppy’s access to toys and games, change the system to adults access on her behalf so not too many things can be spread across the home at any one time
  • Initiate a toy/activity rotation system
  • Limit the number of clothes Poppy has in each size
  • There are a range of significant disabilities in my home. It’s time we catered better for this.

    In other news, Rose is still in an awfully rough way but being discharged into my care on Monday. I’ve been instructed to simply ‘stop being her carer’ by mental health staff. When I’ve suggested she stay nearby instead of coming home where I have my hands full and a young child who shouldn’t be exposed to intense distress, I’ve been told by these staff that Rose is too unwell to be discharged to live alone, but not unwell enough for any other care option, and if I won’t take her they’ll send her to a shelter. Meaning I’m expected to care for her while being instructed not to care for her. I continue to value accruing my ‘lived experience’ in this sector. 🙄😒😠 {sarcasm font}

    Star has come down with bacterial tonsillitis and is incredibly miserable. And now Poppy has come down sick. I’ve spent most of day cleaning, meal planning, shopping, organising for Poppy’s birthday this weekend, and trying to keep my head together.

    It would be really nice if someone could unjam the difficulty setting from ‘hellish’ and move it back in the direction of ‘stroll in the park’. In the meantime I’m tremendously glad for generous friends, wonderful family, beautiful art buying customers, wonderful clients, and having a keen sense of the absurd. Because when you find yourself cleaning poop off a small plastic turtle after the least successful attempt to clean the toddler in a bath ever, you’re either going to burn down the house or laugh.

    Still choosing to laugh.

    Back into the Studio!

    I was well enough for a trip to the studio today! I’m still dealing with infection and asthma and on a stack of meds. I’ve never had an asthma episode this bad or this long before, it’s a bit scary. Going to the studio by myself – and driving again too, both felt strange and a bit worrying. I moved slowly, took precautions, and stayed in touch with Rose.

    But in the end it was wonderful. I bought more watercolour paper on the way, then spent the first couple of hours pottering. Sorting, tidying, cleaning. I went through the hundred or so pages of notes, tests, backup work, and proofs for my handmade magazine project Inside Voice, re read everything and sorted it into groups and two folders, one to put away, and the one containing everything I currently need. My mind is so much less cluttered now!

    Pottering is a delightful thing, it’s fun, it takes the pressure off, and as I do all those little jobs that get forgotten about when you’re busy and focused and under the pump, the space clears out, the lost tools get found again, the physical and mental clutter is calmed. All the papers are put together in a box, and labelled. I found several pairs of scissors and gave them a home, emptied two boxes of random things and cleared them off my floor, found all my notes and sketches for a handmade book that stalled and put them together in a folder, taped test strips into my journal and updated the index, started a new list of helpful things to bring to the studio, such as a small extension cord so I can sit at my desk and plug in my electric lap blanket on these cold nights. It’s slow, I rest often, I listen to music, and do whatever I feel like working on next.

    After a couple of hours of this, I feel settled. My anxiety has lowered, I feel at home and a sense of ownership and belonging has come over me. My breathing is raspy but not distressed.

    Then, I begin to paint and sew. The handmade book takes shape. Here is a sneak preview, neither the artwork not the poem are mine, they are both from prisoners (readers). I believe I have done them justice, so I’ve come home very happy. Hopefully I’ll keep getting better and get lots of studio time this week. ❤

    Bagpipes for lungs

    I’d like to be updating you on my my projects, but it’s just my health. I got half way to the studio today before having a huge asthma attack. I had to choose between going to the doctor, the hospital, or home for my inhaler, or pulling over and calling an ambulance. Not easy! I started to go to the doctor, then changed my mind and came home. I found I could breathe provided I did shallow breaths through my nose. Rose met me at the door with an inhaler and we got the next appointment with a GP. He’s changed my antibiotics to a different type and said the ongoing infection is triggering severe asthma. So I’m now on a stack of new meds and a nebuliser. It’s going to be a fun night of waking every 3 hours to dose me, Rose has her hands full with me and Poppy to look after, and there’s the constant vague worry of trying to decide when it’s time for hospital. My chest aches and when I breathe I sound like a kitten attacking a bagpipe.

    But, I’ve got a soft bed, Netflix, the cuddliest bug around, and hopefully I’ll be feeling better in a couple of days. Fingers crossed.

    I’m so glad I’d already recently decided I can’t pull off a primary income for my family (at the moment). This time last year Rose was in hospital with a chest infection. My family has a lot of extra needs. I simply can’t check out for as many hours a week as a primary income requires. But I can focus on income streams where I can shine even when unwell or on call as a carer. But what I can do is take the pressure off a bit, earn enough to keep my studio open, help with medical costs, afford my shrink. It’s not what I was hoping. But it’s a lot better than banging my head against a brick wall every week. At some point you just have to adapt! It hurts but it’s also taking a lot of pressure off me. I’ve sold four artworks this week, booked two face paint and glitter tattoo gigs, and things are going well despite coughing up a lung. I still have my art residency with SHINE SA and feel a great sense of belonging with that community. A career doesn’t have to be primary to count. It’s isolation that does so much of the harm. I was thinking of the years I’ve spent hanging around mental health organisations, and how it’s been within a sexual health organisation I’ve finally found a genuine understanding of diversity, and a sense of being valued. I’ve got art exhibitions planned and some in the works, and as soon as I’m better I’m going to finish and show you this beautiful handmade book I’ve been working on. I feel terrible but I still feel part of life and that’s so precious to me. ❤

    Transformational Breakdown

    Hi everyone, I have so many half written posts in drafts at the moment it’s ridiculous. 🙄 Life has been weird lately. My psychologist called it ‘a transformational breakdown’. Haha. That means it feels like we’re having a breakdown, giving birth, and blooming at all the same time.

    One night this week we got very cranky while making dinner, drank a bottle of cider, switched to kids who felt stupidly ill because of the alcohol (multiplicity can be dumb that way) then found the couch, a blanket, and Star Trek Next Gen. There’s been a great deal of being very grown up lately and frankly it’s not all that good for us. One of the funky things about our system is that we can kind of shift into whoever is most needed. So if or family need someone unafraid to take a spider out of the house without making fun of them, we can be that. And if someone needs a whole lotta nurturing we’re pretty good at that too. Or research, or arty days in the backyard, or being firm about boundaries or whatever. There’s some things none of us are good at (coughadmincough) but we can adapt and respond to what’s needed of us, at least in personal relationships.

    The secret to making this work is kinda the same as the secret to making parenting work for anyone – looking for that Venn diagram overlap area of where your needs and the needs of the kids overlap. If you just meet their needs all the time you burn out. If you just meet your own you’ve got a kid in a 10 hr old nappy. But there’s a kind of dance to figuring out if we all go to the library on Tuesday that will give the eldest time to get books for her homework, we can borrow a new Charli and Lola for the little one and I can pick up the book of knitting patterns and start Grandma’s present, the kids need to get out of the house but I’m really tired so I’ll take them to the playground next to my friends that’s fully fenced so I don’t need to chase them and see if she wants to catch up for coffee…

    Of course it can’t all be overlap. Sometimes you do things simply because they need to be done, like dental appointments. Sometimes it is about one person’s needs – there’s no other reason you’d go to a dance by 6 years olds or listen to someone learning to play the recorder. 🙂 There also comes a point where we just need to do our own thing. We lived alone by choice for ages because being hooked into roles and having switches triggered by people around us was tiring and overwhelming. When you’re busy turning into what you think people around you need (or will like, or love) it’s hard to have a sense of self identity, to know who you are or what your own needs are. That’s true of everyone, although perhaps in our case a little more blunt. Sometimes you need to have nobody need you and to just see who turns up. Systems are self balancing, to the best of their ability, they switch out who they think needs to be out. My family are never going to need my poet but we need them out because they take care of our soul and renew our spirit.

    We can’t live life with one part forwards all the time without losing out on so much of the world. No one can look at the world through one pair of eyes, one archetype, forever, without missing so much. And while it’s a gift to be able to tune in to what someone else needs and turn into it for them, it’s also a kind of cage if not attended to with some care. Sometimes you need to annoy or even embarrass each other, to be weird, different, inconvenient, and entirely moved upon your own tides. Blue lipstick days. I’m here for you but I’m not here for you, owned by you, of you, made to fit your empty spaces. I’m stranger by far than your dream of a perfect partner, parent, friend, guru.

    I don’t buy the dichotomy we’re presented with – that I can be the best ever carer or I can care for myself. To choose between tuning in to another’s needs or my own. We do not recover well when our carers are in crisis and suffering. We are bound in their cages and suffer with them. If I wish to be deeply attuned, my own heart calls too. My life calls too. It’s not one or the other. It’s to listen or to not listen.

    “Nothing has a stronger influence psychologically on their environment and especially on their children than the unlived life of the parent.” Jung

    So, I am home, finishing EOFY business admin, having meltdowns, having awful fights with Rose because we’re stressed and broke, feeling trapped in the domestic role I never wanted. Hanging washing and more washing and having strange panics about the cleanliness of the house as if attention to the kitchen counters has become a metaphor for how loved I feel, whether my needs are also attended to. I read blogs about autism and books about giftedness and articles about eating disorders and synthesise it all into a treatment program that is working brilliantly, and at night I lie awake hating myself for not being at work.

    There’s hope for us. Today we took a break from the hideous interminable admin to chat with a friendly editor and mentor about our multiplicity book and imposter syndrome and how a blog feels generally manageable but a book is something more formal, official, tangible and we can’t quite transition, can’t quite stop researching and let it be a thing, incomplete and unresolved but good enough as it is. She laughed and we laughed and there was more common ground than difference. She reminded me a little of my late friend Leanne, who was also an editor and would have loved this project, if I’d been brave enough to tell her we were multiple while she was still alive.

    We are doing well. I am hysterically exhausted. Star is thriving, Rose has been terribly ill with migraine and ear infection but is finally recovering, Poppy is currently unwell with a chest infection and I’m getting very little sleep.

    I have withdrawn from work but I’m also hard at work on a new business model and I think I’ve finally cracked something I can actually do for the next 6 months while I’m also on call and caring so much… which is profoundly exciting.

    And I’m still working on a new exhibition for later this year. Holding onto bits of my own stuff and upskilling rapidly in how to run a household with multiple disabilities and challenges in a way that everyone gets what they need – including me. We are still here, still together, holding on. Still kind, still in love, still hanging in there, still believing in better days.

    I have no idea what’s going to emerge, but I hope the damn ‘breakdown’ part eases up soon.

    Sometimes vulnerability is the way back

    I’ve had a difficult couple of weeks. Stepping away from work has plunged me into terrible depression. Carer burnout kicks in fast, in the form of long mornings frozen in bed, unable to start my day, long crying jags, flashing irritation, suppressed resentment, and profound self loathing. Fear, frustration, and hopeless despair struggle for the upper hand. I’m caught by the chilling awareness of my own broken places, the insanity of my phantom terrors. Just as surely as I know the things I fear are not real, I am seized by them. Obsessed with them. Simultaneously tortured, and humiliated by my torture.

    I believe in welfare, believe in care for the poor, opportunities for those of us with disabilities, I believe in dignity. Yet I am drawn helpless, over and over again into a false but compelling sense of my own failure. I am home taking care of my beautiful girls, yet without the prospect of work and career I feel worthless beyond redemption. I had my chance and I’ve ruined it. I’ve let down everyone who’s ever helped me. I have no excuse for such chronic failure and underachievement.

    In darker moments I believe everyone I know is secretly disgusted and embarrassed by me. I am in anguish trying to prove I am worthy, that I have tried hard, that I am not a lazy, selfish, useless bludger. The pain is hard to describe, it’s searing, like a hot brand across my face. It’s deep into my soul. It’s a frighteningly powerful delusion.

    I’d not thought of it that way before this last week. I’ve turned my mind to a serious challenge – understand the territory Star is lost in, and devise a way out for her. And we’ve done it. Setting ourselves the task of reading a book or 12 articles about autism or eating disorders a day, we’ve absorbed enough to tailor a treatment that’s so far worked spectacularly well. I am so relieved I can’t put it into words. The sheer joy of watching the colour come back to her checks and sparkle to her eyes is magic.

    And instead of proud of myself I am devoured by self hate for quitting work, for being poor, for needing support. I’ve never thought of myself as delusional before, although I understand that it’s how thinking works. We all construct tiny models of reality in our minds, none of them vast or complex enough to capture the real thing. We are all deluded. And like all delusions, knowing it’s false isn’t reassuring, it’s just frightening and painful to have been so captured by something that isn’t even real. It’s a very lonely place to be tortured by your own mind.

    We’ve been reaching out more than we usually do, sharing more than we usually share. And it’s helping. Also spending time with friends helps me box back up the dangerous whirlpool of thoughts that snares me. Don’t think about work, don’t try to problem solve money or career. In company I find it easier to compartmentalise it. It gives me breathing room.

    In vulnerability I seem to be letting out some of the poison. There’s a kind of awkward confession to it. Having friends share their own madness with me, offering reassurance without expecting that to fix it is healing. Finding a way to put words to my terror of being judged by family and friends and feeling (not seeing because I can’t bear to look but feeling) them wince in pain from the ‘couldn’t be further from the truth’ madness that has me standing on cliffs, running from invisible nightmares, changes something in me, slowly. If the reality checking is sensitive and loving it helps. We know this from psychosis and this process feels exactly like that one to me. I’ve been here before in other ways, not beliefs but senses tangling my inner and outer worlds. The impossible dual truth I have to find a way to hold in my mind: it’s not real, but it’s real to me.

    It’s not real that my friend loathe me, that I’m a useless failure, that I’m lazy, not trying hard enough, pathetic, a disappointment. It’s not true and I know this. Yet it’s profoundly true to me, and that must be acknowledged too. Knowing it’s not real doesn’t make it go away.

    I’ve shared my distress with friends and family, unpicking it despite the insanity of it. The more I show to safe people, the less it bleeds. There’s no need to tell me how crazy this is, that doesn’t ease it. But being safe to be crazy in front of, that’s a balm when your mind is on fire. I know it’s not real, hold me anyway. Hold me. I’m in so much pain. Hold me.

    Friends share their own madness, the terrible shame of poverty, disability, or loss. I am less alone, not the only one on fire. Everyone burns somewhere in the night.

    Last week a younger member of our system shared her name with a close friend – the first person apart from Rose who knows her name. We tried this once before, different part, with our therapist. It felt like being shot in the chest. A kind of death. This felt nothing like that. It felt like planting a new flower in a garden. Natural, simple, simply the next step. No one was shot, no one panicked. One step closer to a life that doesn’t feel like hiding in plain sight, hoping for closeness while holding everyone back. Each step brings us closer back to our self. We get windows of time with no fire or pain. Time like normal time where we can breathe and plan and live. The darkness retreats to the edges of our life.

    We have a new psychologist and we’re talking about things long forbidden. Not trauma but something for us more vulnerable and unspeakable – giftedness. The potential and the vulnerability of being gifted, smart, capable, and utterly different. Repulsed by elitism and afraid of others’ discomfort and envy we’ve refused to even think about it most of our life. Now we’re reading about people who are strange like we are strange, people who can write at a PhD level but can’t make it through an undergrad program. We’ve opened the box and are using the words and into this unfamiliar space comes grace and gentleness. My terrible fear: that being smart means I should have figured out work and shouldn’t be on welfare, is gently tipped over. Not only is it okay to be smart and need support, being talented itself can be a difficulty for which you need support. I find it easy to do things other find hard, and very much the reverse. I thrive with intellectual challenges and emotional and creative expression. I die without them. The very thing that caused me problems applying for jobs (advised to downplay academic achievements, remove training from my resume, constantly told I’m overqualified despite having no qualifications) is a difference that brings its own problems. Most forms of diversity operate in practice as a disability. I’ve walked around for years with my wings bound, trying to hide what I can do so people will be friends with me and not hate me. If I switch the word gifted for anything else, say, multiple, queer, invisible illness, chronic pain, mental illness, I can taste how sad that is, how much it hurts, how concealment breeds shame.

    We steer our ship by desperate, painful questions, ‘why are we the way we are?’ ‘What do we need to thrive?’ ‘Is it okay that we are on welfare?’ For the first time in 10 years, we can sometimes believe that yes, it is okay. We have done our best, done well, not failed, not let anyone down. We are okay. It’s okay that we need support. We are okay just as we are.

    Work, Failure, and Identity

    My business mentor sent this amazing article to me and it made me cry. https://www.inc.com/magazine/201309/jessica-bruder/psychological-price-of-entrepreneurship.html

    So many quotes spoke to me:

    Though driven and innovative, hypomanics are at much higher risk for depression than the general population, notes Gartner. Failure can spark these depressive episodes, of course, but so can anything that slows a hypomanic’s momentum. “They’re like border collies–they have to run,” says Gartner. “If you keep them inside, they chew up the furniture. They go crazy; they just pace around. That’s what hypomanics do. They need to be busy, active, overworking.”

    I know that place! This is explored in much more detail in Exuberance: The Passion for Life, by Kay Redfield Jamison, which I found very helpful for understanding the intensity I bring to my work and creativity process. My favourite quote from her book is “If exuberance is the Champagne of moods, mania is its cocaine.”

    Back to Bruder’s article: from a guy who put everything including his house on the line and only came through with hours to spare at the worst point in his business.

    Afterward, he made a list of all the ways in which he had financially overreached. “I’m going to remember this,” he recalls thinking. “It’s the farthest I’m willing to go.”
    …emotional residue from the years of tumult still lingers. “There’s always that feeling of being overextended, of never being able to relax,”

    I know this place too. I over reached, just before falling completely apart several years ago. I went way beyond my personal resources to attend a conference, and at the end they invited me to create a network and be paid to do so and I came home to choirs of angels singing. Then they all went back to their lives and not one single person moved the plan forward. I waited and sent polite emails and my stomach dropped and my heart broke. As my confidence fell apart, so did every business opportunity I’d been working on. 10 unrelated arrangements with different people fell apart and so did I.

    The alternative mental health community has not been a safe haven for me in this way. It has contained essential and valuable ideas, but also Tall Poppy Syndrome, a lot of lone wolves with no community capacity, and significant issues with poverty and hostility to those who make money.

    Some make successful businesses and ventures from their skills and experiences. Some, like me, struggle and struggle, looking desperately for a validated way to a fair income. Poverty and all that came with it for me – inexperience with money, self depreciation, discomfort with marketing, had a cost that got bigger every year. At one stage an interstate org was arranging me to visit for a week long series of training and workshops. I was ecstatic. When they asked me for a bio I froze up. They knew I was bad at marketing myself, and good at what I do, but the freeze spooked them and they canned the project. I hated myself so much I wanted to die.

    In my little world I hear often of others success. Those chosen to give keynotes at conferences, invited to overseas opportunities, paid consultants with the ear of people who can fund their projects. There’s so much failure and comparison and fuel for self loathing. The standards are impossible. The hurdles to be included and treated as a professional are impossible. Peer work is a nightmare risk, and hidden behind our inspirational heros are so many untold stories like my own of exposure, unemployability, and brutal failure. It’s a cruel trick and the stakes are exceptionally high.

    I’m painfully, constantly aware that for many others, my own modest successes represent the same pain and lost opportunities. That people look to me and feel the mix of inspiration, envy, and sadness with which I regard my own role models.

    So does cultivating an identity apart from your company… “Other dimensions of your life should be part of your identity.”… it’s important to feel successful in areas unrelated to work.

    For me, who has donated thousands of unpaid hours to my networks, considered a tattoo of my own logo, and invested my career with profound meaning about the value of life, my identity, and my place in the world, this advice is profound and difficult to follow.

    I am so tangled with my business and career aspirations it’s hard to tell where one end and the other begins. It’s been an incredible challenge to set up any kind of business model because I am the business. Having missed out on formal education and all the doors opened by validated skill sets and access to professional memberships, I have found a side road to my goals where that validation is irrelevant and the professional bodies are largely nonexistent. It’s the Wild West of consulting and freelancing. The clients are gun shy because of slick assholes who overcharge and under-deliver. And the contractors are unprotected from most forms of exploitation, have no minimum hourly rates, unions, or HR. Just this last week a client decided not to honour my invoice and paid me only the amount they arbitrarily decided I should have charged. I’m so glad to have found pathways that bypass the formal with all those issues, and yet I’m so poorly equipped to navigate them. The very qualities that have driven me to freelancing are those that leave me vulnerable. Upskilling is largely a brutal process of learning from my mistakes. The mental health costs can be significant.

    I’m tired. Several psychologists over the years have suggested I simply sit back and enjoy my pension. I’ve stopped going to therapy with them after that. There’s meaning in work, inclusion. As Helen Glover put it, you attain citizenship when you pay taxes. I want to be a ‘real person’. At times it’s killing me. Sometimes I have to step back from this capitalist cultural fusion of work, money, and identity. I have to find a way to embed compassion and the context of a culture that is often not kind to those with illnesses and disability into my own understanding of the value of work. I’m starting to shift how I see it all, and transitioning to a clearer business model where I sell certain skills or outcomes rather than clients asking for anything they want I can do- it helps. It puts a small buffer between my business and my soul.

    Let me finish with a recent poem I wrote:

    My business is not
    Who I am in the world.
    It is not
    My identity, my value, my self respect
    Not the sum of me
    My place
    My impact
    My legacy.

    My business is a project
    One project among many
    A way to earn money
    Make a difference
    A way to be in the world.
    It is not the only way
    The one, true, right, way
    The sum of every effort until now
    Validation for all that came before
    The reward for every tribulation.
    It is just my business, one dream
    Among many.

    My business is not
    Proof that I’ve ‘made it’, or
    Evidence I’ve settled, given up, sold out, lost faith.
    It doesn’t mean I’ve gone over to the other side
    Become a success or failed a character test
    It’s something to be proud of but not the only thing
    It’s a part of me but I am not
    A piece of it.
    If it died I would still be here.
    My business is not
    Who I am in the world.

    Star needs surgery

    Our lovely Star has badly injured her knee while sparring in her Taekwondo class. A black belt student accidentally kicked her with so much force it’s ruptured the ACL, torn cartilage, bruised the bones, and sprained another ligament. She’s spent a week in a splint from her hip to her ankle, another week going around to medical appointments, and is now in the care of a physio and walking short distances. The knee has begun to seize so she’s on a program of gentle exercise, rest, and ice to squeeze the fluid out of the joint and regain some of her range of motion in preparation for surgery. 

    She will need a reconstruction of the ACL, which is done by harvesting from her hamstring muscle/s. Until then she is not able to do any sports or other activities apart from walking. 

    This would be tough for any young person but there’s an extra dimension for Star. She’s been struggling with back pain since she came into our family, and we found a gentle and skilled osteopath to support her. Her assessment was that the pain was being caused by chronic muscle tension – related to trauma and anxiety. (On a small level we all do this when stressed – grind our teeth or get tension headaches. Some of us hold more tension through all our body and unless we take care to tune back in and ease the muscles, we can suffer terrible pain as a result) Star’s osteopath eased the pain with massage and recommended a regular exercise program. 

    It took a long time for Star to find something she felt comfortable with and we were surprised to discover she turned out to love and excel at Taekwondo. She’d recently graded, getting 94% and progressing to yellow belt. She was in the process of arranging to train an extra day a week, as well as taking on a yoga class with me every fortnight, and with the regular exercise was no longer needing to see the osteopath.

    I can’t emphasize how essential care of your body is when there’s trauma or anxiety. I didn’t know this when I was young and went on to develop fibromyalgia and suffer intense pain for many years. Posttraumatic stress is a risk factor for fibromyalgia. I’ve been thrilled to see Star’s back pain reduce and her sleeping improve, and I’m daunted by how we’re going to manage now she’s only able to walk.

    It’s looking like it will take a couple of years for her surgery on the public system wait list, so we are currently exploring ways of funding it privately. It will cost about $9,000, plus rehabilitation. Unfortunately when I sought private health cover we were unable to include her in our family cover because she is not our biological child, and she was too young to sign herself up independently. So we expect to have a little cover through the sports club insurance, but most of the cost we’ll need to arrange ourselves. We’re still figuring that out. After the surgery she will still be off sports for another year while her knee strengthens. 

    It’s been a big blow for her and us. But we are doing our best to support her through it and scaffold her with the resources she needs to recover. She’s had the most incredible response to it, from using breathing techniques to deal with the initial severe pain while waiting for the ambulance, to her resolution to practice life skills for when things don’t go according to plan. Her willingness to accept and embrace her own real, painful feelings but also look for the positives is admirable. I am so proud of her. We never choose life experiences like this, but we can learn a great deal from them, especially with some support to process and reflect. So that’s what we’re doing!

    Sarah & Poppy; what’s going on and what’s helping

    Well! This is our garden at the moment, bright with red poppies. 20160816_103851_wm.jpg

    I use pseudonyms for my family members on this blog – just because I’m public about my life doesn’t mean they always want to be. I’m also very discrete about information linked to other people, so for example anything I write about Rose or that might impact on her, she reads and has veto power over before I publish it. That means little frog needs her blog name now she’s been born, and Rose and I have picked Poppy. 🙂

    Poppy is going really well, she’s healthy and gaining weight well. I am still a bit of a mess and struggling to get back to health. Everyone was so sure that once I’d delivered bubs my health would improve, but heart-breakingly that hasn’t been the case! I am dealing with a stack of problems and making more progress on some than others. It’s taking a lot of emotional energy, keeping pain levels high, and forcing us out of the house (which I hate with a passion at the moment, it’s so hard on all of us) for expensive medical appointments and treatments. We are regular fixtures at the chemist at the moment and I am very fed up about it. Things are by no means all bad – we’re both making sure we get lovely moments of connection each day and Poppy is simply the most beautiful, adorable little tribelet in the history of the world, but this is the other side of things that it’s hard to put into words at times. Here’s my health stuff – skip it if you’re squeamish.

    • A grade 3b tear during Poppy’s birth. No one knows why, I was about as low risk for a tear as it was possible to be. Tears come in grades 1-4 (from grazing through to tearing into the rectum) Mine is pretty bad, I have torn through muscles and into sphincters. It was originally mis-assessed as a grade 2 tear and stitched by my midwife with a local that didn’t work. It was then un-stitched and I was taken to surgery for repair under a spinal block. It was not handled well and the whole experience was pretty traumatic.
    • Due to the tear, urinary incontinence. This was a huge shock to me and very embarrassing. Not to mention extremely painful, having urine burn into damaged skin and stitches. Severe pain, numb areas, and no bladder control at all for the first week caused horrible situation where I was peeing the bed or all over the floor without any sensation or warning. Needless to say, there were quite a few keen would-be visitors I was pretty distressed about seeing me in this state. Things are improving as the days go by and the muscles begin to heal.
    • Severe genital pain. Days of doctors telling me I shouldn’t be in as much pain as I was describing, contradictory advice about whether sitting on my wounds would heal them faster or slower, and my allergies to most pain killers made this a bit of a nightmare. Some of the pain may be nerve pain, which is not responding even to high levels of pain killers. Some pain is improving as things heal. I’m expecting to need pelvic physio care down the track.
    • Thrush, systemically. Genitals, nipples, and mouth. Extremely painful. My tongue swelled up and began to crack as doctor after doctor insisted it wasn’t thrush. Burning pain with every breastfeed from about the second day of Poppy’s life, that got steadily worse each feed. Three courses of antibiotics (for my skin infection, the tear, and then retained membranes) over the past month have destroyed my healthy bacteria levels. Now that all areas are finally being treated I’m seeing rapid improvements across the board – this has been the best news all week. The private lactation consultant we saw on Tuesday picked up on the nipple thrush and within 2 applications of anti-fungal gel I was able to feed for up to an hour without intense pain – I have literally been chewing on my hands to cope with the pain of breastfeeding while people kept telling me it was normal and my skin would toughen up eventually. They were wrong!!
    • Tinea (also known as jock itch, athlete’s foot etc, another fungal infection). This is a bit of nightmare for me because I’m really allergic to tinea. It makes my skin peel off and leaves me with horrible, painful open sores. I often get it when taking antibiotics, same as the thrush. I have it all over my genitals and in my armpits. One armpit has almost completely healed, the other is almost entirely an open infected sore, genital area starts to heal then sloughs the fresh skin a couple of days later. Wearing clothing/underwear is very painful.
    • The open sores caused by the tinea have been colonised with what my gp suspects is a staph infection. I have to be extremely careful not to infect Poppy. I am washing my hands so much they are starting to develop excema. The infections are painful, itchy, and difficult as hell to cure. I am trying a number of different things looking for something effective – often a treatment looks like it is working for a day or two then things flare back up and I have to add something else.
    • Urethritis/urinary tract infection
    • Fissure
    • Painful lumps in my legs and arms – we are unsure exactly what these are at this stage, possibly fatty deposits caused by a reaction to my high hormone levels. If they get worse or don’t go away after I’ve got the more urgent problems under control we’ll investigate further
    • Blocked milk ducts. This means large, hard, hot, painful lumps in my breasts, that could turn into mastitis (an infection). Rose, Poppy and I took a long drive up into the hills yesterday in sheer desperation to see a lovely physio who showed me how to massage the lumps and try to clear the blockages. I spent an hour face down in a hot bath last night doing just that.
    • Major breastfeeding issues. Poppy has been diagnosed with a posterior tongue tongue tie, a disorganised suckling method, and of course I’ve had nipple thrush. We also had latch issues for the first week and my milk came in late. Breastfeeding has been a special kind of hell. I am expressing using our breast pump and Rose is learning how to breastfeed Poppy herself using a supplemental nursing system and my milk. (she has not been able to induce lactation herself) It’s been a steep learning curve for us both and frankly after so many extremely painful feeds I’m pretty traumatised. We are still fighting for breastfeeding at this stage. Poppy is also cluster feeding which I have found really hard to handle, so for example I took over a shift from Rose at 6am this morning so she could get some sleep (we handle the nights in shifts now, the nights are really, really hard on us all) and she fed from 6am – 9am. For the first half hour it was calm and even pleasant. Rose woke to me pretty distraught and in a lot of pain by the second hour. Now that we’ve identified this as an issue we are working on making these less distressing. Half the problem is just identifying what the problems are!
    • Severe sleep deprivation and mental health distress. After 12 days of early labour disrupting sleep, Rose and I were short on reserves. No one got any sleep the night of Poppy’s birth, and the days in hospital following Rose and I managed less than 8 hours in total, over 5 days and nights. I was extremely concerned about harm to bonding and psychosis. Both have been present in small ways. For example, I’ve struggled to remember who Poppy is at times. Rose has gone out and bought some very feminine outfits for her because I find that helps. When she’s dressed in something more gender neutral and it’s night when I’m more tired, I find myself getting confused and thinking Poppy is Tamlorn, which is heartbreaking.
    • Grief. Grief, grief, grief, grief, grief. So many dead babies, so much fear of being judged, told we need to just be grateful, focus on Poppy and don’t think about it, and so on. Rose and I have waited our whole lives for Poppy. We love her so much our hearts burst. We adore being parents. And there is also pain and grief and darkness and fear. There are nightmares where we wake to find her dead. The black hours are really, really black, and we are looking after each other intensely to get us all through them.
    • Trauma. I’ve got a lot of stuff to process about birth and postpartum. I’ve been able to have a debrief with the midwife at the birth, and with our amazing doula, and both were painful and healing and desperately important for my mental health. I know I need more time and safe places to talk and that will be a priority at some point. In the meantime I’m debriefing and talking with people close to me and that’s a huge help too.

    So, this has not been a regular postpartum recovery. We are getting help for the breastfeeding and seeing midwives, doctors, physios and so on for my health. We are very, very broke because we had no idea we’d need to save up for this time as everyone was confident my health would improve once Poppy arrived, and as I was so ill by the end of the pregnancy we spent our money on treatments and care then. Our tribe have been helping out which is simply incredible and has made such a huge difference. On good days we stay home and hibernate with our new baby and there are salt baths and naked sunbathing and cuddles and photos and a lot of bonding and hope. Those days or hours are only possible because of the huge amount of support we’ve had around us, and I’m so grateful!

    We’ve had some folks not really getting why we have not been up to much in the way of visitors. Postpartum is a crazy vulnerable time for most (there’s a cool article here with suggestions about visiting people who have a new baby I can really relate to!), and for me it’s been extra stressful and vulnerable. There’s not a lot of people in the world I feel okay on any level about peeing myself in front of, being half naked while I learn to breastfeed, having nasty open smelly sores, crying every other hour, and dealing with a massive amount of blood and other bodily fluids of all kinds. It’s not about withholding access to the lovely new baby, it’s about protecting us in a really vulnerable time.

    Some folks have been asking what they can do to help and I’ve found that impossible to answer. There are some ideas in that article about visiting, but I’ve also been thinking about what other people have been doing that has really made a difference to us all. Here’s the short list:

    • Meals/food is awesome. Really appreciated!
    • Doing a chore or two when visiting
    • Picking up stuff for us like a hand held shower rose for me to keep my wounds clean more easily, or milk, or filling scripts at the chemist
    • Helping out with our medical costs
    • Touching base via text or messenger and not taking it personally if we forget to write back. I get phone phobic when I’m stressed so don’t take that personally either.
    • Listening ear
    • Recommendations for helpful things (books, lactation consultants etc) and also not taking it personally if we don’t pick up on it/don’t find it helpful/see someone else
    • Clearly communicating things using small words and repeating them when we look glazed or fall asleep mid-sentence
    • Not taking anything personally really, we are in survival mode at the moment and things are tough and we are crazy vulnerable and doing our best to take care of ourselves
    • Goo-ing over photos and commiserating over the tough stuff. Rose and I keep getting stressed when it feels like we’re only sharing (or people are only hearing) one half of the amazing/horrible experience this all is at the moment.
    • Not mixing up the parenting stuff with the health stuff. The parenting stuff is tough and amazing and exhilarating. The health stuff has been a nightmare with no upside. People keep trying to commiserate by telling me being a new Mum is tough which is lovely (and true!!!) but also frustrating for me at the moment because frankly I want more chances to be a new mum and spend less time trying to pick my health up off the floor.
    •  Understanding the context of our lives with Poppy – there’s grief and trauma and a long history behind this amazing rainbow baby. That’s a different experience from what some people have, it’s a bit messier and darker and opens up some old wounds. I keep being told that being a new mum is the hardest thing I will ever do in my life, and I understand that’s coming from a  place of empathy and connection, but for Rose and I it’s not really true. This past fortnight has been crazy difficult, but I’d still say it was easier than some other things I’ve come through, and I’d definitely choose it again over experiences like abuse, homelessness, suicide, and miscarriage.

    So there we go. Huge love to all our peoples. I hope it’s helpful to have things laid out more clearly than we’ve been able to until now. I swing between massive gratitude for the good fortune, good care, and love of our friends and even strangers (new friends!) we’ve received over the past few weeks – and feeling overwhelmed, guilty that so many new mum’s in our position don’t get this care, and swamped by self loathing for needing the extra support. It’s all very up and down, this postpartum thing! Thanks for being part of it with us. ❤

    Big wins

    (written yesterday) Today has been a big win for me. I got dressed in something more than underwear for the first time since giving birth a week ago. This is bloody exciting. 

    Rose and I walked to the park with our daughter. I got to feel grass under my feet, sun on my face, the stitch in my side, pain in my yoni, so on and so forth. Post-partum recovery is a bitch. I hadn’t realised how much being in hospital was doing my head in until getting out. I felt actually human being outside.  Leaving the hospital the other night, I wept standing outside in the night, the first time out daughter had been outside in her life. 

    When we got home I walked inside with our daughter, slumped against a wall and sobbed with relief. Bringing her home felt like the finish line of a marathon. Home and safe and back in the real world, my own daughter to love and nurture and protect. My milk has come in, and in a big way. I expressed 70mls today for Rose to use to give me a sleep! 

    I have the emotional stability of a three year old at Christmas. Hysteria is one second away, as is intense happiness. Rose has been a champion at supporting me and baby girl. 

    Breastfeeding has  been insanely difficult and very painful. I’m learning, and getting more feeds that don’t hurt happening, but I’ve had to stop everything else and really focus to do it. My whole world has revolved around it. All the skills I learned about feeding or daughter back when she was constantly underfed and hungry are redundant once my milk finally came in. She has had to figure out how to feed differently too, otherwise I drown her in milk. The whole two steps forward, one step back dance is emotionally wrenching. Breastfeeding is super easy for some people (and I hate of all them at the moment) but for me it’s been a crazy steep learning curve so I’ve done everything I can to make that curve less steep. I focused on learning only one position (football hold) in one location (bed) with one set of needed supplies (two pillows, burp cloth, moo goo, rolled up face washer, water bottle) and focused on getting a latch that didn’t hurt too much. It takes both hands, I need Rose there to feed or water me, and there’s often pain to manage in the way of chafed nipples and sitting on stitches, as well as muscle aches from days spent on bed hunched into weird positions tense and stressed. I don’t wear a top but live in a bra with soft nipples pads, and I swap a bracelet from wrist to wrist to remind me which side I fed on last time. I break a bad latch over and over to get a not too bad one or occasionally a really good one that doesn’t hurt at all. And I don’t try anything else until I’ve got this. 

    Once I’ve started getting it consistently, I add in a new challenge, like being able to do it in low light at night, or being able to sustain the latch using only one hand so I can feed myself at the same time. Keeping that learning curve small as possible though because I need all the success I can get. It was a shock to get home from hospital the other day and realise I couldn’t attend my GP appt because I currently can only breastfeed at all in one way and one location, some of the time. I’m working on it! 

    Our midwife visited recently and I was in a bad state, I’d been crying hysterically for most of the morning, the lack of sleep was shattering me, nightmares were incredibly distressing, and I’d found that I was starting to get out daughter confused with Tamlorn in my mind, which was scary and sad. My pain levels were intense and I was trembling with misery. She offered to debrief the birth and words just poured out of me, the good and the bad, tears and fear and stress. The jumbled confusion of experiences that were at once both amazing and terrible, surreal, sublime, and traumatic. The relief of being able to talk about it in the past tense, happened not happening, to start to sift and name and find words for it all was like having the weight of a house removed from my body. I had thought that the pain and exhaustion was physiological – hormones, sleep deprivation, fibro, post surgery pain. But a debrief took so much darkness out of my world. ❤

    Any plan is better than no plan

    Welcome to my world. Can’t give you a baby photo, light is too low and I’m not using a flash and waking her up for any reason on earth. 

    Tough night last night. Screaming, distraught baby, 1.5hrs sleep for me,  and feeding for hours at a time. Breastfeeding is a serious set of new skills with a steep learning curve. My milk hasn’t come in yet and little frog is hungry. 

    Rose and I have each had a big meltdown over the day and the midwives have been awesome with us. We’ve got some advice about the feeding and constructed a plan for tonight which is desperately helpful because after not much sleep through all the early labour, I’m so strung out the damn walls were throbbing this morning. There’s nothing quite like the sheer misery of sitting in your own urine for an hour trying to feed a baby with chafed nipples, stitches and torn skin burning, and bubs screaming with distress everytime you try to stop… ‘tough it out and hope it gets better’ is a plan I can only work with for about another 72 hours before things get hellishly bad. We’ve had plenty of little glimpses down some dark tunnels we are very keen to avoid travelling. No wonder people wind up in serious trouble. We’ve only had a taster. 

    So we are changing tack now, getting lots of support for the breastfeeding, which is helping a lot – I no longer need to bite my fingers to stop myself pushing her away from my breast due to the pain. We’re having to concentrate hard – no distractions, no multi tasking, watch, learn, focus, ask questions, try it again. I’ve now had 3 hours sleep in 48 and I’m learning as quickly as I can. The sense of hope about having a plan and a sense of why things have been so tough is simply incredible. I can’t do this indefinitely but tonight I can do this. 

    I’m also off the stronger pain relief which frankly sucks and it’s making keeping my head together tough as hell but on the other hand it’s easier to focus as long as I get lots of emotional support. I’m traumatised enough to be struggling with body memories of injections and so on and nerve issues with numbness and burning pain which will hopefully improve soon. Poor body. 

    Bonding is good and intact, Rose helped me bath little frog, and get some skin to skin time, which I missed out on a bit due to needing surgery after the birth. Little frog is s simply the most beautiful thing in existence and worth every bit of effort and pain. 

    Early days 

    Today I had my first breastfeed that didn’t bring tears to my eyes with pain. Hopefully we’re figuring this out. To everyone who recommended Moo Goo balm – you are absolutely right, it’s good stuff. 

    Still in hospital, it’s pretty intense right now. Little frog is perfect, I feel quite broken, physically. It’s going to take me some time and TLC to recover. Rose has her hands full taking care of both of us. (not how I wanted this to be) The hospital physio has been fantastic and a huge support. And the baby cuddles are amazing. 

    Looking forward

    image

    I’ve started a new oil painting, about walking in the local park at night, as I loved to do with Zoe before I was pregnant. There’s been a lot of art this past week. 🙂

    Tomorrow is our baby shower/blessing way. I’m excited. It’s been a sad week too – both Rose and I are waiting on news as each of us has a grandma in end of life care. In both cases they live much too far away for us to visit, which is hard. It’s strange being happy about the baby shower and sad about death and loss at the same time. Rose and I find ourselves feeling vulnerable and anxious, wanting our people around us tomorrow, a sense of connection to our tribe.

    We move between grief and joy, the way I move between pain and pleasure in this pregnancy. One hour we curl up in bed and cry and talk about all the sense of unfinished business. The next we pack baby clothes and games and food for tomorrow, ticking off check-lists and making plans.

    I’m soaking up every hour I get where I’m not overwhelmed by pain but can find the tremendous hope and joy in carrying our baby; counting the stretch marks like tide lines on my skin, Rose and I holding my generous bump to feel the baby dancing under my skin. Watching for those moments even if they are brief, knowing they will be gone so very soon and I’ll look back on them for the rest of my life, maybe even miss them at times. It’s been a very hard pregnancy, but not every minute is miserable. There’s beauty here too; hope, longing, and love. Looking forward to celebrating that tomorrow.

    IDAHOT Picnic & 28 weeks pregnant

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    I volunteered to cut the rainbow cake. I usually do this at family events – I took over from my grandpa when I was a young teen, because he used to do that cut a random size slice and then another random size slice thing, and we’d all pass the slices around the table as he went… thin slices got passed on quickly, thick slices were lingered over like a game of musical chairs but with cake. Inevitably some were deeply disappointed with the slice that settled on them. A quick head count and a little math solves that issue!

    IDAHOT is the international day against homophobia, biphobia and transphobia. I waddled up following a morning at the printer and framer putting in the final orders for my exhibition, which comes down this Friday! It was a good, fun event and nice to see friends there I haven’t caught up with for awhile. Rose stayed home and used the time to get lots of homework done on my computer. I stayed out and pretended I’m not possessive and territorial about my computer. I’ve coped pretty well with sharing the rest of my home with everyone else, but my computer and studio (ie table) do bring a slightly crazed one-eyed barky critter out in me.

    There was a cool badge maker there so I made this for Rose:
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    Pain levels are still very high, I’ve been re-reading Explaining Pain which was a good refresher, but woke at 3am to cry about how hard this is, and sad, and all the wasted years being sick and swamped by pain. Sometimes even the encouraging and helpful triggers such grief and regret. Bubs is head down most of the time, which is causing bad sciatica, hip pain is bad, and heartburn is bad. I have finally put a bit of weight on this pregnancy though, which is great news. Fibro is a bitch, I’m getting bad facial pain, a twitchy bladder (not the same as pregnancy needing to pee every few minutes), muscle cramps in my calves, chronically irritated skin, and fun new sensitivities. I’ve asked for a referral to the psych team at the hospital as I’m getting nervous about how well I’ll recover from birth and worried about being stuck in hospital needing support. The psych team are the only ones who can override the usual rules about partners being kicked out overnight. The prospect of being forced to be left alone overnight in severe pain with our little baby to care for as well as me is a bit harrowing. If anything has gone wrong and I’m feeling emotionally fragile too, hospital is a horrible environment for me. I recall once waking to find night nurse trying to do obs in the small hours of the morning following my appendix being removed. She touched me while I was sleeping and I woke the whole ward with a blood curdling scream and had clawed my way to the far side of the bed before I’d even opened my eyes. When I did I found I was perched on the edge of the bed about to fall/leap out, and the poor nurse was flattened against the far wall. Following that was the slow wail of all the infants in the ward protesting. I don’t know what adding a small baby I feel intensely protective about might do to that reaction but I suspect ‘downgrade it’ isn’t the usual answer.

    Baby is growing well, I’ve been doing finger-prick tests and my results are all great re gestational diabetes, and there’s loads of movement and kicks. We’re into the countdown now and I’m looking forward to having more of the house and sheds sorted ready for arrival. In other news, having made us wait an extra 6 or so weeks for our assigned midwife to come back to work, it turns out she’ll be on maternity leave when our baby is due, so we’re being reassigned anyway. There’s a strange sense of hype and disappointment about the whole process with our hospital. We’ve only had two appointments with our midwife so far, the first we spent talking about delivery options and preferences and worries, the second we discovered she’s not going to be here anyway. It’s odd, because I know that we’re very, very lucky to have access to the healthcare we do here in Australia, but there’s this sense of indifference that’s unpleasant, being very small parts of a much larger machine and having very few choices and little power to influence anything. It makes me want to run away and give birth in the bush.

    On the plus side though, my appt with the hospital anaesthologist was surprisingly excellent. I’ve never had a good appt with an anaesthetic doctor before, usually they don’t beleive me about my allergies, or they freak out and make me undergo procedures like endoscopies without any. This guy was excellent, he listened, asked intelligent questions, gave me good information about options and how to get the most out of them (did you know gas and air works best if you start it at the beginning of a contraction, count through them, and stop it about 2 breaths before the peak? This allows it time to be effective but lets you ride the last of it without having much in your system for the rest periods, which reduces the chance of side effects). We wound up talking about self hypnosis and he walked me through a short technique for self hypnosis which I took to. It was a good appointment to follow the others with, I felt like there was actually a point to turning up and that in among the grinding machinery of a big public hospital, the endless waiting and being shunted from service to service, there were little treasures of useful information and ideas. Hooray for those.

    23 weeks pregnant and sick as a dog

    Rose is sick, I am sick, bubs is doing great. We’re both on antibiotics for bacterial infections (tonsillitis for her, sinusitis for me) and I have been so sick and sleep deprived this week I’m desperately looking forward to feeling better. With my drug allergies plus being pregnant there’s almost nothing I can take to help reduce the pain or get me to sleep and I’m now very worn out. Food aversions are even more severe than usual and I’m struggling to eat and keep down fluids, which is scary and stressful and makes me feel like I have an eating disorder and worry about developing gestational diabetes. Every time I read about the importance of a balanced, pregnancy safe diet and regular exercise I kind of want to scream because at the moment I can hardly walk 50 yards. The sheer misery of chronic pain is hard to overestimate, I cry a lot, I’m very irritable, and I feel completely exhausted. I’ve also stopped sleeping, which may be sickness or may be pregnancy insomnia…

    Just when I think I’ve learned all the horrible things pregnancy can bring with it, I stumble across something else. Frankly right now I’m wildly over all of this and feel like I’ve been sold a load of rubbish about what pregnancy would be like. I kind of can’t beleive I actually wanted to experience this, was really excited about it and chose to do it. The lovely moments of joy at feeling baby move simply don’t stack up alongside months and months of being madly unwell. I’m perfectly capable of being really excited about feeling my baby move in Rose’s tummy, thankyou very much. I hate complaining because she’d love to carry, and because people sometimes think that means I don’t want to be having a baby or that I’m not grateful we are expecting. But hell this has not been fun!! Fibro and pregnancy and sinusitis especially are kicking my ass and it’s not fun or exciting or joyful or glowy, it’s just stressful and exhausting and bloody miserable and yes I chose this. Argh!

    Fortunately froggie is pretty unaware, kicking away every day, especially in response to Rose singing to them. Thankfully! Our GP got out the doppler today and that wonderful heartbeat, so strong and rhythmic, it’s such a relief to hear. I finally have an appointment to meet my midwife for the first time next week, which is a big relief because the bloody hospital has been confusing us no end with all manner of contradictory information.

    I am, as you can hear, pretty overwhelmed. Rose has been superb. Pain overwhelmed me last night and she rubbed my back and talked me through a visualisation where I hadn’t spent the day crying on the lounge, sleepless and exhausted, but instead we went out together on a picnic through the beautiful autumn trees. And the pain stayed there in my body and face but for a little while I went somewhere else, with Rose, somewhere peaceful and beautiful where everything was okay. And I saw the wall I have to jump over to reach that place – grief and hurt for every night I’ve ever spent alone with such pain. But last night she took my hand and I lept the wall and away we ran; into the red and golden leaves, into a place of quiet and promise. Into a world where my body is whole, and we sit beneath the trees by the water together, red velvet against grey stone. Her hand in mine, her beautiful hair snagged with a tiara of leaves. She is my home. She is my peace.

    22 weeks pregnant

    I’m on the upwards swing of my mood cycle, and enjoying it immensely. I have DONE things and FINISHED things and I am back for a little while in the place where hosting an art exhibition actually seems like a good idea. This is unlikely to last so I am getting as much mileage out of it as I can. 🙂

    Last week I learned that Centrelink (Australian welfare) had given me until today to gather a very important assortment of supporting documents from individuals and organisations. Considering the Easter long weekend knocked 4 business days out of the already tight timeframe of one week, I have been a very busy person. It’s like war, really. Of paperwork. The most stubborn and well informed person wins, if you don’t starve to death or beat your own brains out against your desk in the process. At least, that’s my take on things. So today I uploaded a stash of documents and I am hoping that I’ve made some pencil-pusher somewhere very happy and they can photocopy them in triplicate and file them all to their heart’s content. I’m done!

    Yesterday I picked up a second big collection of prints for my upcoming exhibition and spent the evening cataloguing them and filing the originals safely away. Very time consuming process, but also exciting and satisfying! They are sooooo lovely. I am very excited about showing them to people. And I’m hoping like crazy that my catalogue will make re-orders much easier for me, and adding new information a simple process… please?

    I was recently introduced to trello.com and I’ve trialled it this week to help me keep track of my various to do lists… I am managing the household admin for my family, a lot of admin for our amazing teen, everything for my exhibition, and my own personal stuff that needs doing. I’m loving trello. Managing multiple projects is much easier when I can update and modify things online instead of endlessly rewriting my lists as they get harder to read over time. I am taking on admin better than I ever have this year, I’ve accepted that it’s just going to be one of my roles in my family and the faster I adapt to that and the more skills I develop the less stressful it will be. There’s still days I want to set my desk on fire, of course, but I am delegating more and accepting that my fledgling organisational skills are needed and necessary and help my family run more smoothly. I’m also finally counting the admin as ‘housework’ and not double loading myself trying to make sure I do lots of that too- I think growing up it wasn’t treated as a real thing that actually took time and effort and skill, like lots of the things women traditionally did for their families. Repositioning it as important (and something no one else wants to do) and acknowledging that it takes dedication on my part is helping. We keep tinkering with new structures for housework and bedtimes and homework and sharing the very small space we live in now there’s three of us here and bit by bit I feel like we’re muddling our way towards approaches and systems that work for us.

    Pregnant still at 22 weeks now. Bubs kicks and does back flips and wriggles around every day, mostly just a nudge here and there, but sometimes a good hour of frenetic dancing I can’t sleep through. It’s pretty awesome to have that constant reminder they are alive. Both Rose and I are still struggling with pretty intense anxiety about them, personally I feel almost obsessed by my fears about having a stillbirth. I still haven’t heard from my midwife despite many phone calls and messages left for her. I have a letter from the hospital telling me she will be in touch sometime, and reminding me that until I have that all important first meeting I’m not officially in the program or allowed to ask for support from them. So irritatingly I’m trekking off to my GP for hand holding and advice about horrible itching (which can be a sign of important things going wrong, or can just be my usual unhappy skin being extra unhappy) and so on. I know having a midwife doesn’t magically make anything safer or better but as the weeks go by it’s getting harder not to resent not having her on board or take it all personally or feel a bit overwhelmed by the fears of something glitching with my health and being kicked out of the midwife program anyway. There’s a whole lot of things I can’t control and won’t be given a choice about, and having that restrict any further is a possibility that feels suffocating.

    Health wise I have a lot more energy, thankfully, and the nausea is much rarer. Food aversions are in full force still and unpredictable. Cravings are starting up, so far I’m fascinated by coffee which is unusual for me. I’m restricting myself to 2 cups a week but those I am very much enjoying. Possibly linked to that is that the fibro pain levels are high, and my mornings and nights are nasty. I can barely walk most evenings due to severe back pain and uncooperative nerves that don’t want to bear weight on my legs. Mornings I wake up feeling like I’ve been kicked a few times by a horse. My life currently puts deadlines in front of me that require I drag myself into the world of the living and make things happen. Once the deadlines have passed I usually need some days of seriously not adulting very much at all to recover. Tomorrow will hopefully be one of those days.

    Tonight, I’m loading up an online game to reward myself, and in the background I can hear Rose singing our stressed teen to sleep. I adore my peoples. ❤

    Pregnancy & Grief

    The most wonderful news came in last night – the laws here in South Australia have been changed and just in time for Rose and myself. This means that she will be able to be on our babies birth certificate and has full legal recognition as their parent, alongside me. We were so happy we cried. It makes such a difference for our little family.

    I am 15 weeks pregnant now and my bump is too big to fit my jeans or a lot of my skirts comfortably any more, although I still weigh a lot less than I did at the start of this pregnancy. I am experiencing a little less intense nausea and getting about 2 good days out of every week, but the fatigue in particular is still severe and demoralising. My world is home at the moment; I do housework, and household admin, and debriefing for people, and drive people to appointments when needed. A lot of time is needed to rest. Eating is still a bit tough and often takes some time to recover from. I’m hoping that as the pregnancy progresses I might start feeling better and better. Rose is busy and productive with her full time study, and the teen staying with us is a studious school student, so I feel a bit lost without a project of my own, in that rather unglamorous and unrecognised place of spending my health on whatever needs doing I can manage around the edges. I’ve been getting very teary and distressed at the prospect that I might not make it back to paid work or wind up with a degree or a career despite all the work I’ve done towards those goals.

    Rose is such a help. She doesn’t get my distress personally – her focus is on being a Mum and that fills her world. I always wanted kids and work outside of the home and I’ve been so ill for the past 6 or so months I’m starting to lose hope. She was up with me until 1am last night while I just cried my heart out. It’s a madly intense grief and it’s all tied up with self worth and a sense of significance and belonging and connection and making a difference in the world… I don’t feel any sense of judgement towards others who need support or are sick, I’m just struggling to navigate it myself. It’s a little better than it was 6 months ago when it actually felt like if I couldn’t figure work out and find a way through I couldn’t survive. Planning a baby has kicked my sense of wanting to financially contribute to my family into overdrive, far beyond my capacity. And where pre-Rose my focus was strongly about contributing to the world – doing something of value whether I got paid or not, with a family I suddenly also needed to bring in money. Those are very difficult values to pair up at the best of times. I feel like I’ve been mangled between them.

    It’s become such an obsessive focus for me that I’ve been unable to do other things that I love, like paint, because it doesn’t even feel like I can breathe until I figure this out and am on track for a paid job. Combine that with very poor health and that’s a long time of beating myself up and not breathing. I was chatting with a friend the other day who was angry about someone who was breaking the law and being horribly irresponsible and I mentioned that I was not feeling like I was being very responsible at the moment. She looked at me oddly and said that being on disability support wasn’t criminal or irresponsible. I know that but it actually kind of surprised me too. The kind of urgency I feel is as if what I am doing now is illegal and I must find an alternative. I know it’s not rational but it’s incredibly difficult to put the brakes on it.

    I find it so much easier to be brave about my mental health than my physical health, which is the reverse of most people and probably partly a hangover from having all my physical health issues treated as psychosomatic for so long. To talk about having a child while on welfare, in my culture? It takes more courage than I have most days. I get attacked, like everyone who’s poor or queer or has a disability does when they want kids of their own and it’s just too much to bear a lot of the time. Too public, too vulnerable, too much vitriol from too many directions. All spewing the same message of worthlessness, as if I haven’t heard that enough in my life, felt it enough. In some ways being a parent feels like crawling back into the school yard to let the bullies have another go at me. See if you can hit me where it already hurts, some of those wounds aren’t very healed still. I feel an intense grief to be where I am, such a sense of lost years and lost health, so much pain and chaos. So many dashed hopes and so much hard work.

    All my accomplishments start to twist in my mind and what I was once proud of, like my extensive voluntary work, I start to feel ashamed of, that I was foolish and trusting and exploited. That I somehow fell short being good enough to pay. That I trusted the wrong people, made the wrong decisions, invested in the wrong career paths, and cared too much about keeping my precious ethics intact to deal with the real world of work – which is that I am nobody and have no power and no voice and should simply have put my head down and done whatever was asked of me. My overinflated sense of personal responsibility and grandiose ideas are the real problems. My sense of connection to and trust in other people twists too. I feel very envious at times, and in some cases very burned and bitter, in others just overwhelmed. It’s a painful place to be in.

    One thing that has helped a lot has been reading Mary O’Hagan’s memoir Madness Made Me about her terrible years of suffering and her path into advocacy and activism. Maybe because she makes herself so accessible, I was surprised that her road into paid employment was simpler than I thought it would have been. Maybe she was gutsier than I’ve been about pursuing grants, but I could see for a moment that she was in a time and place where there were opportunities for someone intelligent, passionate, aware of the dynamics of power and with a capacity to doubt all the simple answers. It unhooked me for a minute from my frantic soul searching to figure out where I’ve gone wrong or what else I need to do to try and make it across the divide of activism and into paid employment. Some of the answer here is being in an environment where the opportunities are present. I have a lot of opportunities around me and very few of them are paid, and none of them are employment or regular work. Some of the answer too is that most of the other mental health peers I admire so much and have been trying to emulate haven’t had to deal with the multitude of issues I’ve been hit with such as severe physical illness and years spent as a the carer for other people. Many have experienced one or two of the batch but being hit with childhood bullying and abuse, a repressive religious environment with queer sexuality, family violence, severe physical illness, homelessness, years of intensive caring, major mental health challenges, poverty, isolation… It’s been a complicated life.

    Some days it helps to remember that for someone who has come through what I have, still being here is a success. Not having died when I first wanted to at 10 or at 18 or 23 or 27 is a huge deal. I accidentally burned my wrist on an oven tray cooking this evening and it was very triggering because my wrists were often the target of my desire to self injure – such an intense, shameful, private drive that I spent many years learning to understand and dismantle. That’s something I’m proud of too, and it’s something else I can talk about openly and with compassion when I’m connecting with someone else in that kind of pain. It matters that I can do that even if I don’t get a badge with my name on it and a pay check. I’m not useless or lazy. (I’m so scared that I’m useless or lazy)

    It helps to remember that I’ve brought things out of nothing and made things that help ease pain. I’m so, so beyond sad that I haven’t been able to grow them bigger, that the DI is just a little website and a few brochures that the spiritual-cause people find too clinical, the clinical and diagnosis people find way too maverick, and the rest find too mainstream. I know it annoys in some way almost everyone connected to it because trying to find a middle ground between all those perspectives is irritating to everyone. It seemed like a good idea anyway, a safe meeting place for everyone. I don’t know. I know that some people found it helpful and if it really is a good approach I’m sorry to everyone else that I couldn’t get the message out any further or louder and that it will probably die with me. I’m just too tired to do much more. But all the little things count too, right, not just the movements that gain momentum and change the world in a big way, it’s also all the little pebbles bouncing down the cliff years before the avalanche that makes the big difference.

    That’s another pincer – that what I’ve dedicated my life to wasn’t worth the cost, or that it is important, but I can’t take it any further anyway. Either way I’m swamped in grief.

    I want everything to be better before the baby gets here, in an insane way I know I can’t achieve. I want the house to be organised and the back yard to be planted and clean of poop, and to have resolved my work dilemmas (do I have enough spoons to be a part time receptionist and a Mum? How can I know? I know I don’t right now – how many months after the birth is the fibro likely to still be severe? Is there any point in hoping anymore?)… I want to be a better person and eat less chocolate and watch less TV and be calmer and cry less and… sigh. It’s all so painfully vulnerable!

    It’s not enough to stop living while I try to force myself through this brick wall. I’ve worked so hard to be here, and it’s not my fault the wall is so high. I need a hand over it and I haven’t found one. I have to be okay with that, at least for now, and that means letting myself grieve, and it also means going back to the things that give my life meaning and joy. If I can’t do ‘real work’ it’s okay to spend time on my voluntary work. It’s okay to make art even if I’m doing it while the rest of my household is out doing real work. If I can’t find a work related project then I’m going to make a life enhancing project I can work on on my better days and get excited about and feel connected to the world with. (hold on, my love, one day there’ll be a place for us) Not so many years ago I was friendless, suicidal, recurrently homeless, terrified of my multiplicity, and deeply wounded. Not so many years I couldn’t shower without assistance or make it through the shops without a wheelchair. I remember a time when my pain was so bad I would scream myself to sleep. Here I am, fattening with a little dragon wriggling inside me, loved and safe in my home and family that’s suddenly 3 of us and waiting on the 4th. I refuse to keep suffering to punish myself for not having recovered further and to motivate myself to reach that one last big goal I can’t seem to secure. It’s okay to fail, it’s okay to fall, it’s okay to hurt about it, and it’s okay to build yourself some kind of compassion and forgiveness out of all that blood and broken bones. It’s okay to live anyway.

    What do you do when the dreams burn down? What I’ve always done, mourn and howl and dream new dreams. When the bullies make me bleed I paint my face with it and refuse to become one of them. I find my warrior and call them out on it. I run into the wilds where they can’t trap me. I’m 15 weeks pregnant and sometimes now whole days go by where I’m not afraid the baby will die. It’s the most wonderful and joyful thing, especially last thing at night when I’m lying in bed in the quiet and Rose rests her hand on my bump and all the world is just the sound of our breathing and the warmth of our skin. It’s humming with usefulness and competence on the good days, making phone calls, mopping floors, paying bills, listening to people who need a compassionate ear. And it’s pain and vulnerability, ugly and awkward and embarrassing, it’s snot dripping from my nose and making my sinuses ache, and feeling obsessive but unable to let go, and getting cabin fever from another day aching and hurting on the couch, and getting afraid that maybe I’ve complained too much on Facebook or not said enough to my friends how happy I am to be pregnant. It’s waiting and waiting and waiting and following all the instructions about forbidden foods and drinks and worrying that lying on my back will reduce the blood flow to the baby and going to mummy events and feeling weird and alienated and icked out by the overwhelming pink and pastels and brutal birth stories. It’s strangers touching me and not being able to reply to messages despite feeling guilty, and wanting to make art but feeling like it’s in a locked room and I haven’t done enough to earn the key yet. It’s wanting to but still not being able to talk to or write to this baby directly.

    15 weeks pregnant is not a stretch cream or baby formula commercial. It’s life and it’s messy and some of it really, really hurts. And I’m sobbing with sadness about my career at the same time that I’m overjoyed beyond words to be pregnant. It’s feeling useless and horrible on the bad days and proud of myself for making sure my people have clean clothes and for navigating difficult conversations well on better days. It’s not a happy ending, it’s not recovered, it’s not out of danger or no longer at risk.

    It’s not without pain, but neither is it without meaning. It’s precious, and it takes courage.

    Finding new dreams

    Today was a great day. I was sick for a few hours after eating each time, but that left me a few hours where I was up to sitting at my computer… And I have finished the prototype of my photobook based on my hand made art book: Mourning the Unborn. I’ve ordered the first test copy and it will hopefully be here in a week or so. Eee! Then for tweaking and editing and… I’ll be able to show you a finished photobook that’s lovely and simple and nowhere as costly as the original. 🙂

    I am not good at the first time I try to do something. I feel anxious and overwhelmed and want to get it right and don’t like experimenting. If I have a hands on teacher I’m sorted, if I’m teaching myself it can take me a long time to gather the skills and develop the confidence to get my prototype off the ground. This drives me crazy and I really admire people who jump in and learn as they go and don’t worry about making it perfect first time. Once I get the first one out there though, all the brakes come off and I’m away laughing. The second of anything is a breeze for me, at least by comparison.

    Soooooo, published books have been on my goal list for years. A photobook and a non-fiction self help book are so different I expect the first of each will be a challenge, but I’m determined to get off the starting block and Rose is keen to help me. I think watching me transform from puddle of sick misery to my familiar vibrant self has inspired her to help me find some project to work on in my better moments.

    We had a lovely conversation about goals and plans for this year this morning and I’m a little unsettled but also hopeful and releived. I’m finally starting to be able to step back from my intense distress about not working (for pay) and supporting my family the way I want to. I’m accepting that currently I’m so ill it makes no sense to be applying for jobs. So Rose and I have been talking about projects I feel inspired by, that I can pick up and put down between good and bad hours or days, and that might develop into a small passive income stream that helps me feel I’m contributing.

    Books/publications are one part of that, and the others we’ve talked about are an etsy store for art prints and so on, and instead of a birthday party every year (which frankly I’m triggered by and rubbish at anyway), organising a small exhibition of art work.

    I wish things were different. But I’ve got to work with what I’ve got and where I am. At the moment, that’s very little health and a powerful need to be involved in some way that meets twin needs to feel I’m financially contributing and making some kind of difference to someone vulnerable or in a rough place. Focusing on that feels scary and liberating, and I’m hoping I can get some more of those bright moments when I light up and forget being sick to energize and inspire me through the projects. 🙂

    For everyone who’s been patiently waiting for me find some way back from my misery, who’s supported me or sent me encouragement or let me know that in some way I’ve made a difference – thank you so much. You are brilliant and you help me feel like less of a failure. I so appreciate it. ❤