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‘Ouch’ just doesn’t cut it!

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I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. (more…)

This Train is Bound for… Wholeville: A Travel Guide for the Perplexed

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Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville

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SBS Insight: Ouch!

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Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

Permission granted and now it’s back to reality!

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Boxing Day Self Portrait For Theo

Or is it possible I never really left my reality? As if anyone can leave chronic pain behind and really have time off!

Sensing the cynical? I best write this post two ways. Technically, the permission ends on Thursday night when we head back to Melbourne so I’m going to post my brain’s two conflicting versions:

1. Crap thinking out-of-the-way first version

Pulling yourself out of life isn’t easy and especially if you’re forced to do it. I was forced and that force keeps on damn well forcing. It brought Theo and I to Tasmania for a four-month ‘sabbatical’ with the topic of research being chronic pain and how to live with it. Truth is, the topic has more likely been what the hell do we do now? It was also meant to somehow help me rid some more pain and pace up my driving, exercise and some daily chores. I was unsuccessful. (more…)

Signing off for 2014 under an Olsen sun at MONA

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Soula At Mona John Olsen PainitngOr should I say, looking forward to 2015?

Looking forward is more my tune but the changeover of another year, especially with chronic pain, calls me to reflect and to ponder my future.

It’s been three gorgeous months in nurturing Tasmania where I’ve eased my work load, upped my fine art a little, and squished obligations to almost zilch (bliss!). The year will end and sadly I haven’t been able to incorporate driving into my abilities, nor a consistent and regular exercise routine, and Theo is still carrying much of our daily living load… but…

…as I keep stating, finding life balance with chronic pain is really very difficult and I believe ‘we’ are doing very well, yes it takes the two of us, Theo and I.

I’ve stopped my medication and thankfully that rid the night-time hallucinations. Although dainty, my fort has been held without meds, monthly massages and Traditional Chinese Therapy – for this I give huge thanks to the implant in my body.

Indeed the Sun is beginning to shine down on me, and yes, I will certainly be marking the months of this Tasmanian trial period in my spirit’s fashion with a small solo exhibition. I’m working on self-portraits that will exhibit at Penny Contemporary in Hobart. Here’s your diary date: Opens March 6 until March 25. If you want to follow this artistic endeavour, subscribe here.

There’s so much more I could write, but I’m going to keep this light and hopeful and keep my bigger news to kick off the new year…

Signing off now… sending love, health, happiness and the warmest of hopes for pain relief to those of you who need it.

Soula

Painting by John Olsen, The Source on the ceiling at MONA

Melbourne Leader story, Soula bares soul over pain

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The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain.

If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.

Melbourne Leader Mon 1 Dec

Resident shares story of coping with daily agony following fit ball accident

By Nic Price for the Melbourne Leader

SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.

She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.

Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.

As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.

They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.

“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said. (more…)

My interview with the Australian Pain Society

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APS Pain Recovery JourneyA pain recovery journey shared

(Excerpt from Australian Pain Society’s blog. Read the full interview here)

We recently had the opportunity to interview Soula and gain her valuable insights.
We hope you enjoy this blog post and possibly find some useful tips.

APS: Would you describe your pain recovery journey as having a ‘turning point’?

Soula:     There have been a few turning points but two main ones:

  • Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
  • That led, shortly after, to my diagnosis which has been the key to my recovery.

APS: What 3 things would you rate as your biggest lessons in your pain recovery journey?

Soula:

  1. Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
  2. That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
  3. That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.

(more…)

ANZCA Bulletin: Simple Accident Leads to Life of Pain

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(By Ebru Yaman, ANZCA Media Manger. Read the full article)

Soula Mantalvanos Simple-accident-leads-to-life-of-pain-ANZCA-Bulletin-September-2014Research and resources are desperately needed to ensure that fewer chronic pain patients are told to “go home and live with it”.

Soula Mantalvanos was working in her graphic design studio seven years ago when the fittness ball (also known as a balance ball or exercise ball) she was sitting on in place of a chair unexpectedly burst beneath her. Ms Mantalvanos fell from a seated position onto the concrete floor, her sacropelvic region bearing the full force of the blunt fall.

Her husband Theo ran to her side. After the shock settled, she crawled to the carpeted area and her response was to laugh. The pair “had a good old laugh actually – it was such a silly accident,” she remembers. That unexpected and seemingly innocuous accident would determine the course of the rest of her life. Ms Mantalvanos expected to feel sore but better after a couple of days. But the pain continued, intensified and from that moment shaped her days, her nights, her relationships and her ability to work.

It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans. (more…)

Committment, sacrifice and granting myself the right permissions

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Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

My Documentary: The Hurting Strings – An Artist’s Story on Pain

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View above or visit The Hurting Strings on reelhouse.org/the-hurting-strings

Let’s watch The Hurting Strings

I’d like to express my biggest thanks firstly to Peter Lamont for taking this project on and for communicating my invisible message with such perfection even after realising what was going to be a four-minute documentary was turning into something much longer.

And to all of you who either contributed through crowd funding, or supported me throughout this process by giving me great courage to see this difficult task through, THANK YOU. Your support is now spreading awareness for chronic pain around the world.

Director’s Notes

Of the very many things that set humans apart from all else, certainly the most beautiful is our ability to express our lives creatively. If emotions were viscous, then life is the palette for the artist to dip their brush. I can’t count the times an artist has said to me “I need to paint just as I need to breathe”; so what happens when that ability to express is cut short?

The Hurting Strings title occurred to me after thinking about the things Soula created as an expression of her accident and the devastating effects the resulting incapacity had on herself and her family.  Odd yet perfectly fitting in one, the idea of a Marionette dubbed Ms. Soula delivered the title. The metaphor makes it patently clear that the strings that guide our lives are not really ours to articulate and in Soula’s case, they are indeed the hurting strings.

I visited Soula about doing a film on an artist, but as we spoke this other undercurrent kept tugging and pulling and it made me uneasy. It made me uncomfortable enough to change focus and step out of my own comfort zone and in that I found I was in good and plentiful company.

Telling the “I hurt myself and it changed my life” story would, on the surface be difficult to avoid the mundane – after all, people have accidents all the time. The path Soula found to deal with it is anything but ordinary. As her sister Koula says “She found the tools she needed” and in the same way a river finds its way to the sea, the story unfolded as a voyage of discovery and relentless creativity. “No-one will do it for you” is as much a call to action as it is a statement of abject reality.

The film then is one of humanity and being human, the inhumanity of a system designed to avoid yet marketed as help. How selfishness the selflessness are actually one, how the inability to deal with the things we can’t see isn’t through lack of want, it’s through lack of definition.

These are interesting stories. Stories worth telling, certainly stories worth reflection.

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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 aggrevated 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.

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