Today is also known to some as Wattle Day. The website of the Wattle Day Association shares that wattle (acacia species) are among the first to regenerate after fire, reminding us of renewal. And that ‘There is no other symbol that says so much about what it takes to survive and thrive in this ancient land’.

(this is a long blog – about my health journey, new diagnosis and what I’m choosing now as I’m going to fix myself)

I’m so relieved that winter is over and now that I feel better I’ve decided to share a little about what a dark winter it has been for me, and to express my gratitude for the people who have been by my side in the darkness.

Years of 'reasonable' explanations 

In April this year I first met my neurologist. This came after years (yes years) of some neurological symptoms including a pretty whacky nerve conduction study of my arms that had been (very quickly) labelled as side effects from the chemotherapy I had 26 years ago, and also diagnosed as unrelated trigeminal neuralgia. At the time that explanation seemed reasonable, and life carried on. I’m sharing this story because I believe there is value for others in truly paying attention to our body, not thinking we know what’s going on always, and seeking further opinions.

Over the years the tremor in my hand worsened and I told myself it was because I drank too much coffee, and I ‘should’ get off coffee before discussing with my GP because it seemed such an obvious link. But I like coffee lol.

A lot of 'life' at once

I also have had a lot of ‘life’ on in the last few years. When the symptoms started was during COVID (before I was vaccinated if you’re curious) and frankly I was flat out for a good couple of years as WHS manager with high level responsibility for COVID risk management across several states in an organisation providing essential public facing health services. I was ‘text book’ burnt out after that, while also building my Nature OT business ‘on the side’, working on the land we nurture, ‘The Sanctuary’, training many hours a week in kickboxing and busy in the business of living a full and fabulous life.

Then there were a few BIG stressors, which all intersect with my health.

• Menopause and all the associated energy, cognitive, emotional, physical effects whipped my arse.
• In June 2024 I was suddenly, unexpectedly and (for me) devastatingly retrenched from my job that I still really loved and was committed to.
• Three months later in September 2024 my brother died suddenly. I am the last living member of my birth family and his estate is complex with ongoing (life long) responsibility for managing things. Last week I finally finalised my record keeping of over 1,000 hours of work on the estate over the last 2 years. No wonder I can’t get stuff done in my own life. But this is family and I knew this would come, I just didn’t expect it at this time.
• In October 2025 I finally got myself organised to be diagnosed (I think I prefer the words identified, or confirmed) as having an ADHD style brain. That has been a relief but also in many ways hasn’t really changed anything.

Finally, some answers

So finally in April 2026 I met my neurologist – he listened intently and with curiosity to what I shared about how my body was feeling and functioning, wasn’t put off by my tears and anxiety about ‘am I just imagining all of this’, did a super thorough examination, wrote a ton of notes, paused my talking for time for him to think. He reassured me there was something objectively going on and started the cascade of investigations. Blood tests that even SA Pathology had trouble understanding (and were sent to different states for processing), very long spinal MRI, lumber puncture (not as bad as I thought – and CSF looks just like water!), more nerve conduction studies on my arms and legs (ouch).

Some interesting results that ruled out some things and led to a referral to a haematologist. To investigate whacky antibodies including whether driven by an underlying blood cancer. I have to say walking into a cancer/oncology centre again was a low point. I mean seriously, I already did cancer when I was 28. I do not want a re-run of that experience. The haematologist was also very kind, reassuring, methodical – more blood tests, CT scan, a bone marrow biopsy in my pelvis (double ouch for that! Still sore 4 weeks later).

Tangent here – after I met the neurologist I was SO worried about my health and future capacity so I decided I absolutely HAD to empty and sell my brother’s house as soon as I could so spent crazy long days there doing all the things required (a lot) and sold the house in June.

Years of 'reasonable' explanations 

The upshot of all the medical stuff is this – I have an ‘exceptionally rare’ autoimmune demyelinating peripheral neuropathy. It has a name but I’m not going to share it and have people ‘googling’ and getting the wrong idea because I don’t have all features of it and I refuse to be defined by the name of something that didn’t even exist before 1996 and I’m treating as ‘made up’. (of course I actually AM also taking it very seriously)

The BEST parts are;

• it is responsive to treatment!!! For a rare neurological condition that is absolutely something to be celebrated.
• I am a die-hard believer in neuroplasticity
• I KNOW the body has programmed intent to heal and just needs the right environment/circumstances
• I have the deepest, most affirming proof of concept of my personal ability to recover from dire ill-health. High risk, locally advanced stage IIIA, high grade breast cancer at age 28 (with a 50% chance of 5 year disease free survival). I can do this! A dear friend said to me recently that I am her miracle story, and frankly I am my own miracle too.

Now that all the investigations are over (as of last week) I can settle into my 4 weekly intravenous immunoglobulin infusions for the time being. A blood product, flooding my blood with many thousands of other people’s healthy antibodies pooled from donated plasma. For me fronting up for intravenous treatment after my chemo journey has been REALLY challenging, but I’ve done a lot of intentional reframing, visualising, Russ drops me at the hospital, I get a decaf oatmilk cappuccino, pause in the spiritual care centre (used to be called the chapel) and walk on in. Last week I didn’t even cry 🥹.

(I know this is long…I have a lot of words that I've been holding in swirling clouds in my mind for months)

Now to the gratitude.

OMG firstly to my medical team. I haven’t asked any of these fabulous people permission to identify them, so I won’t. I also know they mostly won’t see this, but I expect the energy to reach them.

• My GP (OK now I feel teary). For your patience, care, understanding. For being with me through ALL of these chapters of life – menopause, my brother’s death – helping me understand the autopsy results, for helping me prioritise the many medical needs I feel I’ve had since we met, for being a deep thinker connecting SO many dots in the work you do to help people understand complex conditions and experiences, for knowing GREAT specialists and allied health to refer to, for your own curious mind and for your commitment to always learning, and seeing me as more than my health xx
• To my neurologist – I truly think you are an absolute genius. For your pattern recognition (your words), for deeply listening to me and taking me seriously, for reassuring that ‘this’ is not anxiety, for knowing exactly what to do, for restoring my hope, for feeling like we’re partners in this. I’m SO curious to see how this whole story evolves. And I am 100% determined to be the ‘success’ story in a condition that can be progressive/degenerative and prove the (incredibly limited) literature wrong. If I can grow back my myelin just watch me. I understand that maybe the axons are more of a challenge, but neuroplasticity for the win there.
• To my haematologist – for your confidence, for helping me understand what my body is doing, for COMMUNICATING with the neurologist (so helpful) and working this out together. I truly thought I was off-the-hook and wouldn’t need the bone marrow biopsy but I appreciate the thoroughness. Also I doubted that ‘a bit of panadol’ would be enough and filled my script for opioids lol, the Panadol was enough. I’m super glad for now I don’t need the ‘little bit of chemo’ that was discussed. See you in a year!

And to my ‘team’

Firstly, Russ. Thank you for listening to my endless prattle about all of this. I started this process because my hand tremor was getting worse and you kept reaching over the dining table to steady my hand as the food fell off my fork. I know you were worried. I pursued the investigations because we agreed that we both need to make sure we are well enough to make a big financial decision to live at The Sanctuary. I did not expect a new, somewhat shitty diagnosis with probable life-long implications to be the outcome. Sorry about that. So now I’m doing everything I can to sort it out. For both of us.

To the women in my life who I’ve shared this with. Thank you, from the bottom of my heart. You are my inner circle of strength and can see THIS in the context of the life journey of being a woman. Of the need now in this stage of life to go inward a little and actually do what it takes to care enough about myself to sort this out.

To Carrie – you have been with me through almost all of my grown up life. You have SUCH a steady support for caring about myself. And I care about you in that way too. We matter.

Julie – Oh gosh. You have been the biggest gift in my life this year. I have known for a long time that I’m slow to trust in relationships, and when I do I’m ALL IN. I think we first spoke over a year ago when I was curious about how else I could be moving my body. In the grief of my kickboxing training ending. When we reconnected in April it was 1 day after I met the neurologist and I felt like my life was in freefall. I didn’t think it was the ‘right time’ to work with you. I thought there was no way I had capacity to ‘do’ anything more. I was full of fear. But you knew. With absolute confidence and deep knowing that what you offer is EXACTLY what I needed at that point. A way to calm the panic through breath, navigating how I felt about protecting my sleep, a multiple times a day connection, a way to objectively measure how my nervous system is operating, support, care, evidence, a deep pool of ‘methods’ BUT the ability to apply them to me and tell me exactly what to do so I don’t have to make decisions. The breath has been the most steadying connection to get me through waiting in waiting rooms, medical imaging, invasive procedures. The movement is delicious and I feel so much less fear for my body and my future.

To Nicole – OMG I think I told you about this really early, maybe straight away. You are so knowledgeable, so reassuring, so hopeful. I was so worried about driving, and seeing all the possible decline in my future, and you reminded me you’re an OT and you do this stuff. But more than that you are a friend. I am SO glad you were at OTEx in Brisbane (cue tears). That was such a hard time for me right before I started treatment and could feel my symptoms worsening by the day. I know you are here for me, and I am for you too.

Michelle, similarly the voice of deep knowing, of pragmatic suggestions for treatment, for reminding me I can ask for what I want, and play a role in my own medical management – and I DID ask for a nerve conduction study on my legs and had to remind myself in the discomfort of that, that I asked for it  😆 You are so wise, have a depth of lived experience that I wish you didn’t, but am grateful for you in so many ways, including the work you are doing in the world.

To the OTs in my nature community – wow things have really evolved this year. Our online gatherings have really deepened to explore much more of the nature of life, as well as the nature of nature. Especially for mid-life women deciding to bravely choose more sustainable ways to be and work. To the regulars this year Chris, Deanna, Prue – thank you. You are my clients and also my friends. You have been caring, kind, allowed me to share my own ‘stuff’ and together we’ve shared some profound things. To Karen similarly – this stage of life draws me closer and closer to women who ‘get it’ and are trying to do things differently and find the things that actually build our energy and allow us to express our gifts.

To Carlyn – every Thursday morning, in my PJs on Zoom with you is an anchor in my week. I have shared ALL THE THINGS with you. Probably oversharing, but I know you understand. You have taught me so much about my ADHD-ing. Probably sat through enough tears to fill a bucket. You have the most beautiful way to gently and curiously encourage me to consider some things differently, and also such a validating way to support me in acknowledging ‘actually this IS pretty shit right now’. The things I’ve been saying I’ll do in my business (for years) may or may not happen, but your support for me in the life that IS happening is so valued.

To Holly – I have to leave this till last because, as a person with a ton of words, it’s actually hard for me to put into words what our relationship means to and for me. YOU are the person that probably knows me best. I used to think you knew me better than myself, and maybe in some ways you might, but I’m reclaiming my deep knowing. I have, of course questioned the big ‘why’, why me, why this, why now, WTF I already did cancer what have I f’d up enough to need ANOTHER massive message from whoever or whatever is in control here. It was really hard for me in the times I was in deep shame and despair about this. I’ll never know those answers and I’ve been able to distance myself a little so I can actually get on with the business of fixing myself. Before ‘that day’ I really felt like I was ready to give up on myself. Because this IS hard. You said it’s OK for me not to want to fix myself. And it is. I could just give up. On a lot of things that I carry, not just my health. You said it is OK, allowed, approved, safe to chose what I need to. You know that I’ve never really felt that. And there are still many things that I don’t feel I can choose to give up. Even when they’re exhausting. I also came from that day with the message ‘could you love yourself the way you are’, which is also challenging when I feel responsible for so much. You and I started working together on the ‘cancer stuff’, reframing my identity from ‘poor me’ and helping me separate from the deep guilt I held for impacting other people. To be now in the throws of what is a challenging health situation again feels kind of cruel. But you also celebrate with me when I feel good, and remind me that it’s OK to feel good, to fell inspired, hopeful, on track, aligned. That just because of this new stuff I am still me. I still have a ton to offer and this reminds me of why I choose to do those things in ways that work for me. I and we are not done yet. Thank you for being my safe place to explore ALL of this and not feel that I have to be in ‘toxic positivity’, or ‘hero mode’ all the time.

What now for spring?

• I just ran a pretty cool gathering around fire last week – exploring what it takes to fuel our fire 🔥
• I have loved hosting groups at The Sanctuary – a team of OTs nurturing their wellbeing AND nurturing the land; our big annual revegetation planting day
• I’m still processing fruit…..lemons, mandarins
• I’ve been pruning the orchard, we’ve been clearing fallen trees, fishing logs out of the river after flood, making massive piles of compost.

We’re going to Japan! To a wedding and to hike, soak in hot water outside, drink coffee, visit temples, immerse in the history, eat, sleep and BE.

In my OT work I’ve been tutoring at Adelaide Uni – in the stuff I LOVE – primary health care, participatory community project placements – community development, program logic.

I’m still running group gatherings on-line with OTs, I have some individual mentoring OT clients that I LOVE helping create ways of working (often but not always with nature) that work for them.

I have a list of STUFF to work on to simplify my business structure and costs.

I am LIVING