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Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So I’ll clarify now, this post is a very positive one. It’s about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn’t have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much.

After the story was publicised the comments from my pain family rolled in thick and fast and with so much empathy. One comment in particular touched me most and made the publicity so worth it:

Like Soula, my life was virtually turned upside down when I suffered the same horrific, painful condition known as Pudendal Neuralgia/Pudendal Nerve Entrapment. It is an honour to see the beautiful artwork produced by Soula and her husband Theo. She is such an inspiration to those who suffer silently with chronic pain. A pain so unbearable it robs you and your family of a normal life.
Congratulations Soula. You’re blessed to have such wonderful talent. I hope and pray your pain subsides soon.

Catherine Aurubind, Director/Australian Representative for Health Organisation for Pudendal Education (HOPE)

Anyone in pain is going to be touched by the words, suffering in silence. It’s a huge issue, and it’s for this that the media attention matters most. I know my reaction to treatment is a great gift, one that doesn’t come to many PN sufferers and I repeat and repeat that I have Theo’s undivided help 24/7. I will also admit that if someone had shown me a similar write-up in my first – fourth year I would have thought ‘oh please, that sort of pain management will never happen to me‘. But even when relief comes, or at a moment of low-level pain, sufferers are scared to present themselves and it holds progress up. They shouldn’t be scared. I won’t be frightened or intimidated. I refuse to hide and I won’t be silenced.

My message…

For my positive post to work and give others courage and hope, many things have to happen. I want judgement to stop. People in pain shouldn’t have to say more than ‘I suffer chronic pain‘. It’s harmful and prevents people in pain from going out when they’re feeling ok, or rather when they can withstand their pain. If their houses are really tidy, that means they have help. If you see them socialising in one place, doesn’t mean they can make it to the next. We are able to smile, we can move, we can walk, we can stand, just not alot. We don’t hunch, in fact our practitioners teach us to have great posture, we might sit funny, walk slow, not carry much, and stare as you may you won’t see our pain. If we appear somewhere and look great, we planned for that and it took alot of sacrifice and help. If you have doubts, keep them to yourself please because there’s no doubt in our mind we’re in pain.

I’m adamant to change the judged facade of pain, and I can be with Theo’s immense support and my current treatment.

And the monsters…

For injured workers, such as myself, ‘media’ and ‘silence’ are two difficult topics. And that’s because of the uninformed public and poor profile injured workers are given. It’s also because our Government allows WorkCover investigators to write shallow reports with statements like, ‘she walked, we sighted her today, she hugged her friend outside the cafe‘ etc. I’m doing my bit to get out and go up against these monsters. Publicity such as mine can be used by WorkCover Investigators and passed on to the monsters that call this activity ‘law’ in order not to pay insurance benefits or medical reimbursements. I don’t call it ‘law’ it’s a form of ‘intimidation’.

I’d like to clarify something else while I’m exposed too. Our WorkCover premiums are paid to insure our wages (and as a self employer I paid my own), so that if an employee is injured at work they’re not left without an income. It has no bearing on where you live or what that dwelling looks like or is worth. Entitlements should be safe but they’re not. Too many injured people are made to feel guilty claiming these entitlements and too many are ignored for being perceived as ‘0% impaired’ (like me) because their injuries aren’t visible. I injured myself at the age of 37, I refuse to bow down to the monsters and forfeit the next 20+ years of wages, let alone medical assistance that is promised. No one else should either. You can do something about it here.

Feedback

2
  • Bam's Kitchen

    Great post Soula! I am very delighted to read your article in The design Files. I know you have worked really hard to get to the point that you are now. You are an inspiration for all us that are suffering silently. There is always hope. You and Theo are a wonderful team and you are a very beautiful artist. However, just when you start to feel a little better, be careful, don’t push yourself too hard. Take care of yourself and enjoy your work, rest and play space you have created.
    I think that all work cover investigators should endure our pain for just 15 minutes and then they would never bother PNE suffers again. Dealing with PNE pain is like enduring labor pains but without the joy of the baby at the end. We are good at coveting our pain as this is how we cope and endure. Take care, Bobbi

    • Soula Mantalvanos

      Thank you so much for your support darling Bobbi. You’re so right about not over doing it but how little does it take for us to over do it? WorkCover make it very attractive $$wise for the investigators. And most wouldn’t know what damage they contribute too.

      Thank you so much for your compliments too, it’s great encouragement. I hope you’re well and that nerve block is kicking in. We want to keep those recipes coming… x

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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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