The Chronically Resilient OT

28/10/2025

Great resource here on considerations for surgery for those who are hypermobile (+ mast cell activation and dysautonomia).

I was pleasantly surprised that my surgical team were aware of this trifecta and asked informed questions to better support me. I know there is still a lot of learning for health professionals to do but things are changing.

🏥🧑🏽‍⚕️Common Surgery Concerns for People with Hypermobility: Questions & Answers

A collaboration between The Ehlers-Danlos Society's CORE Network of Excellence members, Sharon Hennessey, of Not Just Bendy, Dr. Jason Lam , and Bianca Comfort of Comfort Psychology has produced a comprehensive perioperative management guide.

“This evidence-based resource gives healthcare providers the tools they need to safely care for hypermobile patients during surgery, including considerations around dysautonomia and mast cell activation syndrome.

“We realized that while having a medical guide was crucial, our clients needed their own version – one that explained these complications in plain language and gave them practical strategies to advocate for themselves. That’s why we also created a patient-friendly guide.”

The guide was developed following discussions at The Ehlers-Danlos Society CORE Network of Excellence meeting in Baltimore, USA, earlier this year. Together, we dazzle!

Read all about it here: https://www.notjustbendy.com/blog/surgical-management-eds-hypermobility/

27/10/2025

“My function varies my value does not”

Thanks for this important message Badibidu - Art by Cat Regi

Love how this one turned out 🥰

‘My function varies my value does not’

I think lots of us have experienced bad weeks and good weeks. With each one making us question the existence of the other. Throughout, you’re you, and you deserve care and respect and compassion. That means to yourself too!

26/10/2025

16/10/2025

*Content warning - mention of the name of a surgical procedure and time in hospital*

Tomorrow is a big day. We are up early to drive 4-5 hours away to the hospital where I’m having a laparoscopy. I cannot eat anything after a light breakfast which is going to be really difficult for me as someone who needs to eat frequently.

It’s hopefully just a day stay but the anaesthetist has recommended to be prepared for an overnight stay, depending on how I recover from the anaesthetic.

I am lucky enough to have never spent a night in hospital and hoping everything goes smoothly and that I don’t need to.

As we’ll be so far away from home we have booked a holiday home by the ocean for a couple of nights (I also didn’t want to sit in the car for 4-5 hours right after having a surgery!). It’s dog friendly too, so Octavia gets to come ☺️

Any well wishes and healing vibes greatly appreciated ❤️

Also open to any tips and suggestions for managing time in hospital and recovery from a laparoscopy.

Picture is of some recent purchases from a craft market, including an emotional support pickle which is in my bag along with other fidgets and comfort items.

11/10/2025

Saw this book at the library and had to get it. I will post again when I’ve read it with a review, but the title definitely drew me in!

04/10/2025

Neurokindred is putting on an amazing event

🌱Thriving Autistically is a FREE 100% online Wellbeing Event for Autistic Adults.
This event centres Lived Experience and Connection to Neurokin through play, social justice, experiential spaces, peer support, discussion & SpIns.
7 days (Oct 4-10)
46 Events
53 Autistic volunteer facilitators
19 Sponsors
300+ Autistic Pre-registered and booking

1233 event registrations so far

Register here (can change timezone): https://neurokindred.com/thrivingautistically25/

Still space and 21 open max events (open group max unless noted)

Day 3: Monday 6th Oct
Autistic Social Entrepreneurship-
Dr Sharon Zivkovic-4-5pm (Brisbane-AEST)
Link: https://neurokindred.com/autistic-social-entrepreneurship-the-program-for-autistic-innovators-systemisers-social-entrepreneurs/

Fidgeting Autistic Wellbeing-Jo and Kai Seymon of Kaiko Fidgets-5-6pm (Brisbane-AEST)
Link: https://neurokindred.com/fidgeting-autistic-wellbeing/

Creating Safe Spaces for Autistic People – Laura Hellfeld, Scott Nielson & Helen Edgar - 10:30am - 11:30am (BST)-7.30-8.39pm (Brisbane AEST)
Link: https://neurokindred.com/creating-safe-spaces-for-autistic-people-everyday-practices-for-individuals-and-organisations/

Autistic Professional Artists Unite-Karen M. Andersen-8-9.30pm
Link: https://neurokindred.com/autistic-professional-artists-unite/

Day 4 Tuesday 7th Oct
Self Compassion Alumni Panel-Melody Edwardson of Wellbeing Wise, Gabrielle Hall , Deb Hunter & Special Guest Dr Ru Ying Cai -6-7.30pm (Brisbane-AEST)
Link: https://neurokindred.com/self-compassion-alumni-panel/

Meet the Author Lounge - David Gray-Hammond Emergent Divergence: The neurodivergent ramblings of David Gray-Hammond -7-8.30pm (Brisbane-AEST)
Link: https://neurokindred.com/meet-the-author-lounge-david-gray-hammond/

Day 4: Wednesday 8th Oct
Reclaiming Sensuality: Annelil Desille of Neurokinnection-9.30-10.30am (Brisbane-AEST) (FULL)

Autistic Substance Use Network- David Gray-Hammond, Autistic and living the dream Katie Munday & Tanya Adkin- 11am-12.30pm (BST) 8-9.30pm (Brisbane AEST)
Link: https://neurokindred.com/the-autistic-substance-use-network/

Day 6: Thursday 9th Oct
Burnout & Brilliance: Reconnecting with our Values as Twice/Multiply Exceptional Adults-Caitlin Hughes of Cathartic Collaborations 10.30-11.30am (Brisbane AEST)
Link: https://neurokindred.com/burnout-and-brilliance-reconnecting-with-our-values-as-twice-multi-exceptional-adults/

Narrative Approach to Career Development-Kory Sherland of Autie Talk & Kory Sherland Career Counselling- 2-3pm (Brisbane AEST)
Link: https://neurokindred.com/narrative-approach-to-career-development/

F@ck the Patriarchy: How one’s Unmasking is connected to liberation for Autistic people-Dr Simone Kolysh of Defiant Life Coaching-7-8.30pm (Brisbane AEST)
Link: https://neurokindred.com/fck-the-patriarchy-autistic-feminism-discussion-group/

Day 7: Friday 10th Oct
No One is Coming: On Autism, Ageing and the Quiet Terror that We Don't Talk About-Bridgette Hamstead and KJ Wiseheart
7am-8am (Brisbane AEST)
Link: https://neurokindred.com/autistic-elders-presentation/

International Autistic Issues – Helen Said
8am - 9am (Brisbane AEST)
Link: https://neurokindred.com/international-autistic-issues-special-event/

Cook/Bake Chat – Karen Noble of
2pm - 3.30pm (Brisbane AEST) (7 spaces left)
Link: https://neurokindred.com/cook-bake-chat/

Synaesthesia Online Rave & Closing Ceremony – Charles Clapshaw & Jacqui O'Reilly
6.30pm - 7.45pm (Brisbane AEST)
Link: https://neurokindred.com/synaethesia-online-rave/

Need help to register-send your list to:
mason@neurokindred.com
or
linda@neurokindred.com

Accessibility requirements:
kahlia@neurokindred.com

03/10/2025

My dysautonomia has been confirmed as orthostatic hypotension. Knowing what it is has been so helpful in knowing how to manage it.

I have increased my water and salt intake, use compression garments and am currently trialing a medication to support my blood volume.

Things like dysautonomia, mast cell activation syndrome and hypermobility are also more common among the neurodivergent population so always good to consider if there might be something else going on.

October is Dysautonomia Awareness Month!⁠

Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia with different symptoms. ⁠

Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.⁠
⁠
People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright.⁠
⁠
The two most common types of orthostatic intolerance are:⁠
⁠
1️⃣ Orthostatic hypotension (OH) — low blood pressure on being upright.⁠
2️⃣ Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure.⁠
⁠
Symptoms of dysautonomia include: ⁠ ⁠
⁠
● Tachycardia (fast heart rate)⁠ ⁠
⁠● Palpitations (feeling the heart racing or pounding)⁠
● Hypotension (low blood pressure)⁠
● Lightheadedness ⁠
● Presyncope (a sense of being about to faint)⁠
● Syncope (fainting)⁠
● ⁠Blurred vision⁠
😶‍🌫️Brain fog (problems with concentration and memory)⁠
● Headaches⁠
⁠● Chest pain ⁠ ⁠
⁠● Shakiness⁠
💤Chronic fatigue⁠
⁠● Exercise intolerance and feeling worse after exercise⁠ ⁠
● Swelling and/or discoloration of the legs after standing for short periods of time⁠
● Cold, discolored hands and feet⁠ ⁠
⁠● Temperature dysregulation⁠ ⁠
🥵Sweating⁠
● Sleep disturbance⁠
● Gastrointestinal issues⁠
● Nausea⁠
🚽Bladder dysfunction⁠
⁠
Click the link to learn more about dysautonomia, how it's diagnosed, and management strategies to help: https://www.ehlers-danlos.com/dysautonomia/
⁠

02/10/2025

This is like pre-emptive rest before an event. It can make a huge difference

A sensory pro-tip NO ONE talks about is the idea of conserving your tolerance.

The concept is simple, the more you have in the bank NOW,
the more you’ll be able to spend LATER.

The morning of my TEDx talk, I came down for breakfast wearing headphones, a hoodie, and a weighted vest.

Why?
Because the less taxing stimuli you take in, the more you’ll have left to use on costly situations in the future.

I don’t HAVE to “just deal” with loud conversations and clanking dishes at hotel breakfast.

I can block all that out NOW, so that I can better deal with the bright lights and noisy crowds at the venue LATER.

It’s not a perfect formula, but it’s how I’ve learned to manage high stress situations at a professional level.

It works for me, maybe it’ll work for you?

01/10/2025

Tired can be such a catch all term for so many things. As a neurodivergent and chronically ill person the word cannot capture the depth of the experience and it’s a tiredness that doesn’t necessarily go away with rest

30/09/2025

It's happening! I am so excited to announce that I will be delivering my workshop on neurodiversity affirming and trauma informed occupational therapy on November 28th.

I have delivered this workshop at 2 conferences in New Zealand and Australia now to packed out rooms and am pleased to bring it to the online space as well.

I'm also looking forward to delivering a training where someone else handles the marketing and admin and I can just do the part that really lights me up!

Here are the details for signing up:

Edited to add- please tap to the Left of what shows below, that will take you to the event page, I don’t know why the message button is there!

Second edit- link is now in comments

This workshop explores what it truly means to practise in a neurodiversity-affirming and trauma-informed way, moving beyond buzzwords into meaningful application. Led by an OT with lived experience of neurodivergence, this session creates space to unpack key principles and set practical steps for mo...

29/09/2025

Another amazing resource from NeuroWild

29/09/2025

I’m taking a much needed break from work for the next two weeks.

This week I am staying away from home with my mum and sister who are over in New Zealand for my grandad’s 90th birthday.

Different neurodivergent people holiday in different ways, here’s a few things I’ve noticed about how I’m doing it this time. This evening I did some parallel play with my mum with both of us reading on the couches. Then we all played a board game.

No expectation to socialise, we can engage when we want and have a break when we need.

Also staying in a lovely holiday home near the beach with a wonderful view. And it’s the same place we all stayed in when they were both over 2 years ago.

Here’s a picture of the sunset over Kapiti island and another one of my bed all set up for my neurodivergent needs. Headphones, rechargeable hot water bottle and weighted blanket.

I don’t bring my own weighted blanket when I fly but a lovely friend up here has lent me one for the week and I am so appreciative as it really makes a difference for my sleep.

What helps you manage when on holiday?