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Married 20 years today

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Theo and I celebrate our 20 year anniversary today. 10 of those years we’ve had to unwillingly share with chronic pain, 5 of which, I can totally admit I was not really present.

Celebrations are so hard because you can never celebrate the way you used to.

You can’t celebrate the way you want to either.

Even if 10 years have gone by, I know for sure that Theo and I would have had suitcases ready now and we’d be planning a great trip overseas to mark our anniversary as well as our birthdays which all fall in November. Continue Reading

Welcoming the biggest US beauty brand to Australia – Rodan + Fields

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Who says injured workers and people with chronic health conditions can’t work?

Welcoming the biggest US beauty brand to Australia – Rodan + Fields.

Give me an opportunity to be involved with a company that doesn’t pride its business on photoshopped images, that embraces ageing, while also offering a business model that allows me to be involved within my health limitations… and I’ll be attempting it!

Continue Reading

This, is Queenscliff

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I’m thinking it might be relevant for followers to see where I moved to. So, here you go – welcome to Queenscliff!

It has been a huge transition (by now you’ve heard about it) but moving from my previous (20+year) city life to this seaside town is quite a change!

Kind of forced sea-change! Continue Reading

Self Management: Acceptance, Commitment & Sacrifice

Author:
Elizabeth Banfield_written within
(Image: Written Within* by Elizabeth Banfield hand burnished linocut, kozo tissue, thread ©2017)

My sacral stim and I have known each other for a full 17 months now, so I felt it was the right time to make some comments and reflect, again, on this self management business.

Yes, the sacral stim is making a huge difference.

Now remember – I’m talking about my pelvis, my pain experience, my brain, my nervous system and my genes

Three (of my never-ending) realisations for living with chronic pain are that I have to:

  • accept that my life and I have changed – forever
  • commit to a new way of living, and
  • make the sacrifices that it takes to self manage

Chronic pain really blurs life so it takes time to realise the impact (positive or negative) of any treatment or change of activity.

Time seems shorter for me. When I compare myself with full capacity humans, I feel I achieve less and the physical cost is greater.

Not the best value! But it’s what I can get.

The Sacral Stim

The good news is: Continue Reading

Mamamia: My experience with medication

Author:
Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes. Continue Reading

Suck it up and smile – it’s holiday time!

Author:

Yippee!! Not! It’s too hard.

I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.

Suck it up!? Um…,

No!

And that word my dear readers, is how I manage this holiday time.

I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.

Here it is again:

Noooooooo

And with that comes,

I’m sorry, I can’t do ‘that’

With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.

There.

But of course it isn’t so easy. There are a few sad bits that come with ‘no’. Continue Reading

Time to exercise – but how?

Author:

It took six full months for me to feel I was ready to have my follow up appointment with Dr Nick Christelis after my Sacral Stimulation Implant.

I got a few ticks at the appointment:

  • Device incision healed
  • Leads incision healed
  • Both areas feeling cushy and a bit more robust
  • Honeymoon period helped with setting up the new life
  • I’ve learned a few of my new limits

I also got a few concerned looks expressing the following:

  • I’m more fatigued
  • I’m sad
  • I’m feeling like I can’t get up in the morning
  • My mood is really low
  • I feel I’m slipping
  • Sleep is a bit more disrupted than usual
  • I’m waking up anxious, breathless

We had a good chat. We agreed alot – especially about the need to find a way for me to exercise. I’m resting less now – no longer napping in the afternoon (a great thing!), so that means I’m moving more. But my heart rate isn’t really going up. It needs to.

In the nine years of chronic pain, I’ve tried a squillion routines and tricks in the attempt of finding some way of exercising without painful consequences.

Anything I attempt seems to translate as ‘too much pressure’ on my pelvis.

To understand what I mean, just imagine the feeling in your muscles after you’ve worked out at the gym. The muscles scream the day after (for various reasons). And the day after that – even more so.

But in that normal circumstance, the pain goes. With chronic pain it doesn’t go, in fact it manifests.

With PN there’s a further impact – signals and functions are affected and I get pretty uncomfortable. One thing leads to another and if I don’t listen to the signals, before I know it, I’m in a fire ball.

I’ve learned to listen (had a few nerve blocks, sat in loads of cold running water) and thankfully the fire balls don’t happen anymore. But other uncomfortable things still do happen – I just have to find another way.

This is what I’ve tried:

  • Walking in various amounts, strides, shoes, places, times and tracks
  • Yoga (which I sometimes practice but can’t sustain regularly)
  • Stretching (forget that!)
  • Various slow/resistance movements
  • Hydro therapy
  • Clinical Pilates
  • Meditation (not exactly heart rate lifting)
  • Dancing

Not only is none of the above possible but even if I could partake in any of the above (in my butterfly way), I’m hardly going to get my heart rate up enough. Continue Reading

Who am I going to be – Soula ‘a’, ‘b’ or ‘c’?

Author:
_Sacral_stim

My new stim’s changed everything.

I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?

In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.

We’re trying to make me the best I can be so we can be… someway, somehow.

Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.

Post op

After living with my sacral stim for six months, I can confirm the following: Continue Reading

I made a gallery

Author:

True! Theo and I made a huge life move as many of you have read.

Our transition began over a year ago when we escaped to Tasmania to figure out how to manage life with chronic pain.

It was the best thing we did even though terrifying at the time.

In just over a year, we have spent four months in Tasmania, returned to our dear Collingwood, sold our warehouse sanctuary, removed ourselves from our main business (as it was impossible for me to do the previous design work), planned a new lifestyle, and began a new venture with the utmost faith and backing of some very dear arty friends and some special few design clients.

Again, terrifying. Continue Reading

I’m part of Bridge For Pelvic Pain’s Advisory Committee

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Bridge for Pelvic PainAnd I’m most honoured! To be recognised for my pelvic pain advocacy is one very exciting aspect, but to be invited to be part of a committee with a global vision, is quite an additional excitement. It appears my pain experience will definitely make a difference to others.

About Bridge For Pelvic Pain

Mission: Our mission is to connect the global community of chronic pelvic and sexual pain patients to resources, education and hope through an integrative approach. Vision: To bring hope, resources and knowledge to the pelvic and sexual pain community worldwide. Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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