Keeping Busy, Living Life, and Staying Pain Free(ish)

The essence is all in the ‘ish’, right?

But grant me this: at least I did use the words ‘pain-free’. And the words ‘busy’ and ‘living’.

You would not have read that years ago.

I’ve decided to check in with my health family as it’s been too long, and messages are dribbling into my inbox and met with replies, ‘I’m not advocating anymore’.

I feel terrible!

But then I get distracted with some lovely life activity and realise I don’t miss advocacy, and my decision to stop regularly writing about my lived experience was a good one.

I have questioned myself about not sharing the advances I’m feeling (and the potholes I still fall into), but it’s clear to me that not focusing on the what, where, how, why and when of the pain world is perfect for me – in fact, it has helped me with my recovery.

What do I mean by pain-free(ish)?

Before you crack the champers, let me clarify the ‘pain-free path’.

I’m by no means without pain, without limitations to lift, drive, move, exercise, scream, sing, dance, hop, skip, stare into the sun and jiggle as much as I would like (or even at all).

But I’ve found a good balance.

The day goes a bit like this:

• Don’t do this so you can do that.
• Eat this instead of that.
• Wear these – not those.
• Go to this place, not that place.

It’s fatiguing, but whether I choose a long walk instead of a shorter one and include stairs in the routine (or not), makes all the difference.

Whether I wear the thicker leggings or thinner ones also makes a difference. The distance I travel as a passenger in a car makes a difference, and the number of times I get in the car makes an even greater difference.

Filling my head are the ongoing calculations: eat pasta / have light veggies for dinner? Commit to a breakfast and lunch fast / enjoy a dessert? Struggle through a hot day / breezing through the cooler day?

Some things are totally out of the question:

• Driving,
• Sitting without a cushion,
• Concerts,
• All-day standing events,
• All-day sitting events,
• Events at far locations,
• The beach,
• Groups of people as opposed to few people

This is how my days go.

However, I have it all down pat now. And I am strict – only breaking the rules for my loved ones and prioritising myself like there is no tomorrow.

I never overstep my line.

That’s a tough call.

But it’s easy for me. I love staying home. I can make things like paintings!

Keeping busy

I’m having an exhibition of works two years in the making with two other fabulous artists, Silent Narratives, at Queenscliff Gallery.

You can read more about my art on soula.com.au, and you can also sign up to receive a preview as well.

I will present four stories about my travels in Italy, each told with two paintings and one etching. One of those stories is shown below: my San Marco, Venice story.

The travel theme and doll-like figure representing my life define the work, but aspects of my Cypriot heritage also appear.

Although the doll depicts invisible illness, the doll still manages to get to Italy and enjoy herself, so they are happy works—a true celebration of my being able to enjoy myself again.

Exhibition details

Silent Narratives: David Frazer, Soula Mantalvanos & Sue Poggioli
Queenscliff Gallery from Dec 5 – 22, 2024.
Subscribe to updates on soula.com.au or qgallery.com.au to receive an invitation to the private opening.

Living Life

Theo and I went to Italy – two years since our last decent break.

Being grounded to manage life means we can’t take advantage of short holidays, and any holiday needs careful planning.

Self-employment also impacts freedom – physically and financially.

Italy is my dream place; I’ve said it before: I manage so well there -the culture suits me to a ‘t’.

With accommodation so generously offered, we could plant ourselves in the divine hills of Cortona and plan our days from there.

Italy is inspiring, rejuvenating, refreshing and just so beautiful. And the food… the food! So pure, nourishing and delicious.

There is so much anti-inflammatory goodness, but even the odd bowl of pasta goes down so very well – the wheat is different in Italy. I’m convinced!

We nurtured ourselves and settled in before it was time to say, Arrivederci.

There will be a next time; we don’t know when, but that relates to finances more than my confidence in planning a holiday.

I can go now.

I know I can plan life activities now.

I’ve learnt how.

And the pain levels stay down.

Management is about sticking to my rules and fine-tuning my life to prevent fatigue. If my tongue stops rolling and my brain starts to fog, I know I’ve overdone something.

I can see these microscopic body hints so clearly(ish) now.