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My pain

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…)

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…)

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.

My interview with Pelvic Zen coming up this week

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SPTBestLogo

Sullivan Physical Therapy StaffI was contacted by Sullivan Physical Therapy a little while back, asking if they could have Sullivan Physical Therapy’s clinic listed on pudendalnerve.com.au. The clinic specialises in women’s and men’s health conditions related to the pelvic floor and is located in Austin Texas. But after visiting their websites and seeing all their amazing work, I offered that we take the post further and see if we could collaborate to create more awareness for pelvic pain, after all that is the purpose of my advocacy, and Sullivan Physical Therapy’s aim is to reach and help people with pelvic pain. And collaborate we can! These guys are so onto everything pelvic pain. Their therapists are actively organising their own radio shows, blogs, and this is the sort of social media that links perfectly with other supportive pelvic pain networks which then allows us all, to reach more people.

Caitlin McCurdy-Robinson Pelvic Zen, is a show designed to promote pelvic floor wellness in men and women. Caitlin McCurdy-Robinson, who hosts the show is a Physical Therapist at Sullivan Physical Therapy. This is our first collaboration event and you’re all invited to the interview. I will be speaking with Caitlin this week;

live on Thursday 10th at 5:30pm Austin, Texas (Central Standard Time) / Friday 11th 8:30am Melbourne Australia (Eastern Standard time). (more…)

My Peripheral Stimulation implant

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I’ve had quite a few emails asking about my implant so I thought I’d create a more informative post. Given this device was a life changing treatment for me, I really haven’t given it its due attention. Implants are becoming more common for the treatment of pain, so it’s definitely worth getting my experience online.

I have to start with the pre implant status so you can all understand the impact the peripheral stimulation device had made for me (and I’ll call it my ‘stim’ if you don’t mind). I had just had diagnostic cortisone to my coccyx and had three wonderous days of complete relief. Hard to understand that’s even possible when a person can’t sit, stand, function without great levels of pain at every moment of the day.

I had presented to so many specialists (note the pages from my book, Art & Chronic Pain – A Self Portrait, of what my calendar looked like from 2007 -2009) and was labelled ‘the most severe case’ often. I had not been diagnosed as yet, I was lost, nowhere else to turn.

Self Portrait Book Calendar page ©SoulaMantalvanos The complete relief response I had from the cortisone shot to the coccyx was ‘progress’. Has your practitioner told you in investigating your PN treatments that you might learn ‘what you don’t have or don’t need’? This is what’s meant by ‘diagnostic’. You almost have to work backwards with PN, cross off ‘what isn’t the case” and in my case, I had learnt I didn’t have ‘mechanical’ pain, I had neuropathic pain. My ‘mechanical’ surgeon, Mr Roy Carey, then handed me over to Professor Peter Teddy, and I have much admiration, respect and thanks to express for that moment. (more…)

Theo, and his ‘carer’s’ perspective

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Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. (more…)

I do I do I do believe in spooks, I do I do…!

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Cowardly Lion drawing ©Soula MantalvanosIt’s my anniversary today. Seven years from the day my (and Theo’s) life changed. I’m heavily considering changing my beliefs… did I break a mirror?

I’m not superstitious, but if it means owning up to breaking a mirror I’d be more than happy to change my views. So long as at 11am today, this Pudendal Neuralgia (PN) issue goes away and my original, very well, non aching body, returns to my hardly affected exterior.

‘But hang on Soula, keep writing, unfold and expand those squally thoughts’, thoughts that flow from positive and grateful, into negative and hopeless, and end up reality checks that tell me, ‘well, you’re making progress‘. This is a mantra in my mind daily and I have to keep reminding myself that the mantra once was simply, ‘you’re getting worse‘. (more…)

Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

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AIM of Pain 2014 from (OoI) on Vimeo. Or read the speech below.

I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.

Was I terrified? Absolutely! But as if chronic pain hasn’t trained me for that, pushing me past all my boundaries and limits, and facing constant fears… this was going to be a piece of cake in comparison!

The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art. Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo’s help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support offered to both Theo and I was 100%.

I was asked to present my story as honestly as possible and in my own words and pictures. (more…)

Reality posts on my Chronic Pelvic Pain Story Facebook page

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Recoup Off To The ParkI thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.

Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of  ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.

To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page.

Reality update: Shopping (if you can call it that).

Finally, without having to worry about capacity for work, Theo and I were able to head to the city for some much-needed essential shopping. Cushion in hand for a pitt stop breki we then headed to Hill of Content so I could see my book in store.

From there the day was basically us walking slowly, me only holding my phone, Theo gathering the essentials we were buying and slowly looking like Santa whilst I played the butterfly next to him, leaning against every counter I could find.

We stopped for lunch at 1ish (so that’s 3 hours up time) and the pain levels were roaring. They subsided with the calming effects of bread on butter and a glass of wine (and my sitting on my leg to avoid being on my coccyx). By the end of our lunch the timer was ON. I still needed some sneakers. Lucky to find some quickly and do the ‘trying on’ activity at the end of the day, the pain levels headed for the roof.

A short drive home and I collapsed for 2 hours asleep on the couch. Here are the finer details: (more…)

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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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