Pandemic Resources for supporting People at Risk

Formal supporter and informal/family carers alike are all facing new challenges at the moment with the pandemic. If you’re anything like me you’ve been scrambling to get in front of the situation, make sure basic needs are being met, and take care of yourself at the time. It’s a hectic time! Here’s a few resources I’ve created or come across which may help speed up your capacity to adapt, predict, and head off potential issues and risks.

Pandemic Plans

If you’re a support coordinator or social worker you may need a formal written safety plan for your most at risk clients/participants. Larger organisations are using overall plans, which is fine, but if you can doing personalised plans for at least the high risk folks – ideally in consultation with them – is good practice. It tailors the plans to the person and is an invaluable handover tool if you become unwell and need to shift your caseload to someone else.

Informal family and friend carers, a written plan may seem like overkill, but being able to share it with others does have value – assuming anyone else in your formal or informal networks has the same perceptions of risk and ideas about safety as you and the person with the disability (PWD) is a common point where things start to unravel. Fewer assumptions, more communication!

There are a few examples being kindly shared by people, so if you don’t have a public health background you don’t have to start from scratch. This is mine and you’re welcome to borrow, use, modify any aspect of it provided you don’t on-sell it. 🙂 Pandemic Safety Plan.

Karina and Co have generously made their Pandemic Safety Plan public too.

The Growing Space have also been agile responders to the crisis and have provided some invaluable free resources such as this fabulous Pandemic Checklist.

Free webinars

The Growing Space have also teamed up with Disability Services Consulting (DSC) and are offering a free webinar about responding to the challenges of COVID-19 for participants, families and PWD.

They are also running a free webinar for Support Coordinators.

DSC are offering this training on preventing infection.

Resources

DSC have their own fabulous list of COVID-19 resources for people with a disability including general and NDIS specific information.

I hope that’s helpful. Take care out there everyone. If you need some more specific advice or help reach out to me or the folks I’ve linked here, I expect the webinars in particular will be excellent.

Support your community through Coronavirus

It’s a mess out there, I know. Whatever impact it’s having on you, I know that we all do better when we are connected. So here’s some thoughts about boosting your connections over the next month, for your own health and that of others in your community.

The disability paradox

If you’ve never had to deal with anything like this before – you have so much to learn from folks with disabilities who are used to struggling with medical anxiety, lack of clarity, having to self-isolate for health, trying to negotiate working from home, and limited access to essential resources. We are your mentors!

We are also under horrible strain. We have heard from many places that people don’t need to worry because it’s only the vulnerable people like us the coronavirus is likely to harm or kill. We are facing extra strain as resources run thin and supports struggle to keep up. Be very mindful of us and how frustrated, devalued, hurt, and angry many of us are feeling at the moment. Reach out where you can and remind us we are valued! Offer supports and learn from our expertise. Together we have got this.

If you are able to be active

Here’s a fabulous little template that’s been going around online you can print or hand write and leave in letter boxes or on doorsteps. According to the ABC it was developed by a Cornish woman Becky Wass who has posted it to her older neighbours. Here’s a printable link for download.

Image description: printable template with the heading Hello! If you are self- isolating, I can help. For full details see the link in the text above.

If you are self-isolating

Rose is unfortunately at high risk of complications if she catches COVID-19 so we are self isolating now. If you are doing so – thankyou and good luck. I will be creating a lot of online resources over the coming weeks so get in touch if you want to be notified about them. I’ve created my own letter which we printed and left under painted rocks in our area yesterday. Feel free to modify or copy yourself, here’s a printable link for download.

Image description: printable template with the heading COVID-19: Take care at home. At the bottom of the image is a painted rock made to look like a bus. For full details see the link in the text above.

Connection is the antidote

Communities are more than neighbourhoods. They are our friends and family, our online connections, our workplaces and support groups. The mental strain of a pandemic and quarantine can be huge but many factors such as boredom, loneliness, anxiety can be easily addressed. One of my friends hosted an online video craft session tonight. A physio I work with has sent out a comprehensive, informative, and reassuring email with clear pandemic safety protocols to their staff. Someone dropped us some lovely eczema friendly soap this afternoon.

If you’re looking for some extra resources I’ll be sharing a draft pandemic safety plan for vulnerable clients within the next couple of days, and here’s a couple of articles I’ve found helpful, courtesy of Headspace, and Prof Nicholas Procter:

Don’t panic, plan. Connection isn’t a crazy response, it’s part of the “tend and befriend” crisis impulse – less well known than fight or flight, but in this instance, far more useful.

Reflections on ‘Better Together’: coming to grips with Diversity, Inclusion, and Access

What an impressive event Better Together 2020 was. I have a particular soft spot in my heart for people who aim big. An inclusive LGBTIQA+ conference intending to tackle difficult topics is a seriously ambitious project, and I wonder if anyone involved had much sleep the fortnight of it all! It was messy, excellent, imperfect, exhausting, brilliant, frustrating, and absolutely worthwhile for me.

During the conference I shared my personal reflections called Safety and Diversity.

A couple of my newer roles are doing community rep work on behalf of LGBTIQA+ folks through the Freelance Jungle, and SALHN (the Southern Adelaide Local Health Network), so a big reason for me attending was to learn more about some of the queer community I don’t know so much about. It’s very difficult to rep such a diverse and complex community and I take it pretty seriously that I need to have at least basic knowledge across the whole spectrum to be effective. A conference is perfect for this, I can engage more than I can with books, and I’m not putting too much of a burden of emotional labour on friends or acquaintances to re-explain their lives 101 for the umpteenth time.

So I’ve come home equipped with far more knowledge about the critical challenges that need support for the Intersex community, the Asexual community, people in non-traditional relationships, and folks who are both queer and autistic. I’ve also got contact details for other advocates who have offered to cast an eye over anything I’m not sure of and help me find my way. Why is this so important? Well here’s a statistic that blew my mind – of all the funding that goes to LGBTIQA+ organisations in Australia, less than 1% is spent on the specific needs of the Intersex community. The distress around being surgically altered to better fit a gender without their consent is intense. As one person said with passion and eloquence “My gender was taken from me with a knife – this kind of inclusion harms people”. People assume this community is being supported because their initial is in the title, so other funds are not provided. This is heartbreaking and we must do better.

Many difficult topics were discussed and a wide range of people were given a platform from which to speak. A huge number of attendees were given bursaries to support their involvement (including me), and outside of the 2 day conference, a collection of caucus’ on specific themes such as trans and non-binary gender were held as private spaces for those communities only. The efforts towards inter-sectionalism were huge, we heard from a lesbian police officer, survivors of ‘corrective rape’, migrants, people of colour, survivors of conversion therapy, parents of trans children, teachers, and so on.

One of my favourite topics were the sessions about being allies. I’ve only ever heard this spoken of as an insider/outsider divide between queer and cis/het (nonqueer) folks. This conversation was much more nuanced and talking about many marginalised identities and communities, the need for allies to support each of us and our obligation to be allies to each other. A woman spoke about her efforts to support organisational change in her workplace and how she has been able to sustain it partly because she has had her own allies she can call on in need or frustration. They are webs and networks. I’ve come home a better ally of some, with more allies of my own, and excited to support others to take these steps themselves.

Another topic I got a lot out of was the sessions about cultural and organisational change efforts through mechanisms such as Rainbow Tick Accreditation. It was especially helpful to hear how they have been put together, the research behind them, and the challenges organisations can struggle with. I really appreciated the speaker from one of those organisations, a Jewish Care community, speaking honestly about their efforts through Rainbow Tick. He spoke about the difficulties when “virtuous intent (is) let down by human error, not malice or phobia” and acknowledged the challenges this poses for people struggling for acceptance, and those learning new practices, terms, and processes to be inclusive. 

Image description: 2 people sitting on a stage in front of a digital presentation. The title is: Working towards “cultural safety” for LGBTIQ people. A large rainbow coloured arrow with small text describing steps in a change process, points to the Rainbow Tick Accreditation symbol.

Better Together was not without challenges however. Inclusion can be full of good intentions and just as many missteps. When you are trying to be inclusive for a community you are not personally part of/know much about, missteps are also inevitable. Especially when you are trying to create inclusion for very diverse communities, there’s a real challenge. For example, the Disability caucus was attempting to meet the access needs of such a wide range of folks – mobility needs, vision impairments, Deaf and hard of hearing, sensory sensitivities, chronic illness and pain issues of exhaustion, and so on. It was a medley of contradictory access needs. When we changed from clapping out loud to using the Auslan for applause, the Deaf and signing folks, and those who find applause unbearably loud all appreciated it. The vision impaired and blind folks however, could no longer tell what was happening during the applause because no one realised to describe it. The app used for communication was super helpful for some and bewildering for others. The loud purring air conditioner was perfect for some, too cold or not cold enough for some, and distressingly too loud for some.

This is such an important aspect of inclusion. There is no such thing as universal access. Access – defined as whatever you need to show up and be included – be that sensory quiet spaces, ramps, a creche for kids, etc – is not a one size fits all but a buffet of various tools and options, some of which fit well together and some of which blatantly clash. The interfaith conversation for example? Was scheduled on the seventh day of the Jewish week, Shabbat, where observant Jews could not attend. The 8 hour days were exhausting for folks with chronic illnesses and pain conditions. The small rooms with locked doors were stressful for folks with trauma histories. Folks with mobility aids struggled to push through crowded corridors between sessions, and if they arrived late often couldn’t fit into the next session and missed out. Access is challenging. Access needs we are unaccustomed to is basically a guarantee for messing up somewhere.

Access is a universal need. But those in the cultural majority or with the most power have created cultural norms that fit best with their access needs. It’s not that some of us have them and some of us don’t, we all have needs. Some of them are fitted so neatly into our regular lives we’ve never thought about them. Some of them are neatly able to be fit together – most folks can ascend a gentle ramp with a hand rail, very few are excluded by that design. Some access needs are near universal with age – most of us will need a mobility aid at some point due to injury or illness and it’s helpful if we can fit through the doorways of our home and into our own toilet. Most of us will experience some level of change in our eyesight and hearing, in our stamina and the strength in our hands as we age, for example. Some access needs clash – such as sensory avoidant autistic folks who need quiet spaces and not too much visual bright clutter, and the needs of parents of young kids who need child safe environments with engaging toys and activities. (at times those needs are reversed for those communities!)

This doesn’t mean giving up on access and inclusion. It means ask for help. Assume we will fumble. Get allies and peers to support our efforts. Be humble when it doesn’t work – take criticisms and feedback on board for next time. Have a strategy in place for warmly supporting anyone our access choices exclude. It’s inevitable that access choices will exclude some – the larger and more diverse the community, the more inevitable this is. In those cases, it’s crucial to anticipate this and have a respectful response ready. Some of those people are very hurt and very angry because they are so marginalised and so tired of being excluded. Not being able to access even a so called ‘inclusive space’ will be salt in the wound, and we need to be honest about this. Diplomatic engagement with such communities is essential, as is offering to share resources where possible and inviting them to ‘fix’ the issue themselves – plan their own caucus, set up their own spaces, put their skills, knowledge, and capacity into it too. Rather than a minority trying to solve all the problems, the organisers become the facilitators of a diverse range of spaces and opportunities, supporting cross communication and respectful engagement. We cannot ‘fix’ each other’s problems but we can build solutions and pathways together.

Navigating criticism in community work is a topic I’ve written about before because it such a challenge and such an essential skill set.

For a conference like this I’ve been tracking the feedback and conversations online and I can see that many are contradictory (wanting the conference to be low cost to remain accessible to the many LGBTIQA+ folks on low incomes or welfare, and wanting spacious, centrally located venues with many large rooms. Wanting shorter days for folks with folks with lower endurance, but longer caucuses, and not having multiple events running at the same time where people belong to both communities. Asking for better input from diverse communities, also wanting people’s time and expertise to be valued and paid, and wanting to keep administrative costs low…) Like the fabulous good/cheap/fast: you can have any two out of three dilemma, all things are valuable but they are rarely all achievable at the same time. Compromise is a painful but essential aspect of any community resource and that can be hard to swallow. Like values, all are important even when they are in tension. There will not be consensus about which are most important, and when the folks actually carrying out the work make calls, it’s up to them to decide which are most achievable and how to navigate that compromise. It’s not okay to allow criticism to crush something that is important and meaningful – while not able to be all things to all people, or for angry people to crush the capacity of those who are not yelling across the divide but putting their skin in the game and trying to create something that helps. It’s also not okay to blanket refuse to acknowledge the costs bourn by those we exclude, and the unthinking patterns of our exclusions that fit the systemic racism, sexism, rankism, ageism, etc already embodied so often in our culture. Between these two poles lay allies, growth, hard conversations, good intentions, calling out, calling in, and an acceptance of the imperfection of our resources while also celebrating them.

At the end of Better Together, I wrote notes on what I’d seen work and where things could be improved. I also did some informal interviewing with people I didn’t know and took down their ideas, the best of things they loved, and what they’d love to see changed. The next conference will be Adelaide and I’m hopeful that we can learn and grow and make something fabulous, safer, imperfect, more inclusive, and just as valuable in 2021. I’m happy to have come home with great new contacts and a lot more information, and I’ll be putting it to good use to better support our fabulously diverse communities. 

Where I’m going in 2020

I’ve just arrived safely in Melbourne for the LGBTIQA+ “Better Together” conference. (Say hello if you’re coming too) I’m tired and excited and really looking forward to it and meeting all the other amazing folks.

Image description: smiling person with short hair and a bright blue shirt with the image of a kitten asleep under a book and the slogan “Curl up with a good book”.

I have Rose to thank for the cool t-shirt. I’ll be away for 5 days and my heart aches knowing the nights will probably be tough for Poppy. I, on the other hand will probably get a bit more sleep while I’m away. Parenting dilemmas!

ID person in a blue shirt and a child in a yellow shirt tendering hugging each other

It’s been a full on couple of months. Massive bushfires have been destroying huge areas of Australia. It’s an unprecedented disaster with the largest evacuations we’ve ever experienced. The losses are staggering. Some folks are in the thick of it, while those like me who are lucky to be safe are watching with horror and confronting survivor guilt and vicarious trauma. Helping out through donations and community support eases the helplessness and is a small balm to the fury and grief. Sometimes it’s big things, others it’s smaller gestures like taking fruit to the local wildlife carers or joining in a working bee for a local damaged farm. Anything helps to unfreeze, to ease the impact of months of bad news and horrifying casualties.

If you’re feeling paralysed, silent and distraught like I’ve been, you might find it helpful to look for something small you can do and do it. Look for good news, for people’s kindness, and share that too. Walk away from it at times to build your capacity to stay engaged and not burn out.

A lot of people are in terrible pain, facing life threatening conditions, or handling thousands of burnt animals. These are all high risk for trauma, and the survivor guilt of those of us who are lucky can lead us to torture ourselves as if more suffering would somehow help. This is part of vicarious trauma, and things that help with this are connection with community, breaks from it, humor, and keeping a clear sense of responsibility.

It is not my fault, I do not deserve either my good fortune or to be punished. I am a better ally and supporter when I’m not overwhelmed.

The other major focus for me has been my work and studies. I’ve been in an intense process of wrapping up projects and studies and launching new ones.

I’ve completed my grad cert in public health with mostly high distinctions. The mentoring program with Sally Curtis has started and been full of invaluable learning already.

I’ve started in two new LGBTIQA+ representative positions, one on the Consumer board with the Southern Adelaide Local Health Network (the hospitals, rehab facilities and so on). The second with the Freelance Jungle as an admin on the team which supports a 5,800+ online group of Australian and New Zealand freelancers. I’ve been a member and then patron of the group for a couple of years, and it’s a fantastic resource with a great focus on mental health and inclusion. The Better Together conference will help me understand both the needs and resources of the wider community.

Consulting and community development work has been so satisfying last year with a creative health project in prisons with SHINE SA and a peer based research project about systems change for people living with chronic illness with TACSI. I was so pleased to support these, they were both work I’m very proud of and look forward to sharing more about.

With face painting I’ve been getting more work from councils and organisations aligned with my focus around diversity and inclusion, such as schools for autistic kids, or queer events, which I’m very happy about.

I’ve launched a whole new arm of my business, providing independent support work for folks through the NDIS, with a special focus on mental health and diversity. It’s going very well and I’ve found that I love it even more than I anticipated. Being able to cone alongside people in their lives and homes and provide personal peer based support that is therapeutic but not ‘therapy’ is simply wonderful. Like a doula it’s a flexible mix of practical and emotional support, looking towards bigger goals but also very present in the moment.

It’s very similar to the group work I used to do in mental health services, such as facilitating the hearing voices group. I’m part of a small community of practice with a professional organiser and a handyman, and I’m setting up supervision and a network of resources. I’ve been extremely busy with it which was a bit unexpected – it’s taken off very quickly and I’m largely booked already.

I’m also booked to deliver a new series of local creative workshops which I’ll share more about shortly.

My work life is all coming together under an umbrella of creativity and diversity. I’m very passionate about it and excited to watch it grow in 2020. I’m putting applications in for further part time studies to continue to develop my skills in this area, and looking forward to getting back in the studio sometime to pick back up my current project there.

Thank you all for your encouragement and support, it’s taken me awhile to find my niche but I’m incredibly happy to be doing what I am, and feeling very aligned with the values and quality that links my different business areas together. 🧡 If I can support you or your project in some way, get in touch and let’s talk.

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

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    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.