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The pain

Take a seat… if you can!

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Soula's Seat Pile

With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up).

Of course, I’m no pro when it comes to seating, but I’ve learned a lot from my own experience and from listening to the ‘ouch’ in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it’s the stool with adjustable foot rest!)

Although I’ve worn out, thrown out, tried and tested so many more seating aids, I’m showing the ones that have lasted or worked for a while. These are the ones I often resort to when things are getting heated again. Continue Reading

Performance ‘fit for modified duties’

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Did you all hear I’m back at work part time? Much thanks to our flexible home/office setup and Theo’s immense help. Regardless, how lucky am I hey? But oops, hang on, I have to correct myself. It’s not lucky for me, it’s lucky for the WorkSafe Agent. And I must clarify because from their point of view I didn’t get myself back to work, it had nothing to do with my research, the practitioners I found, their treatment and great therapies (or my hip pocket!). Nope, nothing to do with nerve blocks and medication, but rather, my high activity levels. Yeeees, I have been a full time artist and I’ve been caught red-handed!!!

Excited as I was to finally be seen as ‘fit for modified duties’, I was looking forward to receiving the WorkSafe Agent’s promised ‘dispatch’ mail. I expected to see copies of my new job description, Doctor’s capacity report and a letter explaining I would no longer be entitled to weekly benefits. What also came though, was a ruthless bundle of papers including video and photographic surveillance from February this year, that although amounted to a bunch of thin air, somehow became the reason I was ‘fit for modified duties’. I knew where this was going… Continue Reading

Nominated for an award in the 2012 WEGO Health Activist Awards!

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WEGO Health Activist Awards badge

Best in Show Awards (Blog, Community, Facebook, Twitter, Vlog)

“Awarded to someone who exemplifies the use of one particular social platform to raise awareness and make connections.  Nominate your favorite blogger, community leader, facebooker, tweeter, or vlogger.”

Well I’m quite chuffed about this. Thanks for nominating me Theo!

If you like what I’ve done with pudendalnerve.com.au please endorse me below or if you have someone else to nominate, do so via this link: Continue Reading

Back to life

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Soula's Business Card Origin of Image

Soula's Business Card Origin of Image

Words… searching, searching… any second now… … … almost… actually, nope.., it’s not going to happen.  As if there’d be ANY words for me to explain how I feel writing this post. So please gear up with me, imagine the drum rolls and the biggest mountain you can imagine with me standing on the tippy top yelling because this IS real, IT’S true, IT’S official:

“I’M BACK AT WORK!!!!!!!”

No, I’ve not overdosed on my medication and the stress of a chronic pain issue has not damaged me enough to be hallucinating.., I. AM (wiggling heaps but all the same). SITTING. IN. A (very nice ergonomic). CHAIR. TYPING. THIS. POST!!!!

And, I definitely mean to sound excited. After all, I conquered a beast that came pretty close to defeating me and keeping me virtually still for the rest of my days (sadly I’ve not killed it completely but I’m still hopeful!).

It’s been 2,063 days since my ball went burst…

…or

5 years, 7 months, 23 days (including today)

…or

178,243,200 seconds

…or

2,970,720 minutes

…or

49,512 hours

…or

294 weeks (since I’m kindly rounding down but in reality pain calls for rounding UP).

I feel like… like… ME! And there isn’t a greater feeling. Continue Reading

Awwwards Honorable Mention

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Oh happy day! Yes this website has been nominated for an Awwwards ‘Site of the Day’ with an Honorable Mention.

Please help me say, ‘thank you’ to the wonderful team at Origin of Image who helped me put this pelvic pain resource together and in turn gain more awareness for Pudendal Neuralgia.

All you need to do is visit this awwardswebsite link, log in with your Facebook or Twitter account (or register) and rate us from 1-10.

To date, pudendalnerve.com.au has had almost 10,000 visitors. It certainly isn’t anything to be happy about, that’s alot of people in pain, but if that’s an indication the website is indeed becoming a resource, creating awareness and helping with the frustration of chronic pain, which in turn gives great relief and direction, then I’ll be very happy. My chronic pain at least served a purpose.

Thank you Origin of Image.

Please vote now… awwwardswebsite. Continue Reading

Chronic Pain Info group on Facebook

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Chronic Pain Info facebook page

Chronic Pain Info is a Facebook group/page. A place to come and learn, share, vent and meet other likeminded individuals who share similar health conditions and concerns.

This is a post from one member (Rachata Brown) from the “recent posts from others” area of the site…

How to understand us… people who are dealing with the pain.
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. Continue Reading

Italian lifestyle, perfecto for Pudendal Neuralgia

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Roman style Anti burst fitball (Image: Now this is what I would call an anti-burst fitball!)

I’ve just come back from Italy. I lived a dream, that’s exactly how it felt. I lived it with my husband Theo. Without him, clearly I would not have been going much further than the Italian restaurant up the road, but aside from the obvious, seems like Italy was a great destination choice.

Obviously there had to be some turning point in my Pudendal Neuralgia (PN) life if I was ever able to think about travelling again and the turning point for me was my stimulation implant.

Just as my senses returned, my dreams did too and my dreams always include travel. That’s what we did every year before my accident, it was part of our normal and fortunate life.

So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.

So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas.

I set off very prepared having had nerve blocks and begun Endep before I left Melbourne. I was taking a quarter of a 10mg tablet every second day and increased the dose gradually to 3/4 per day by the end of our five-week trip (and by then I was well and truly quite happy to sleep all day even though it was Italy outside. I had to knock 1/4 off my dose).

Five weeks, yes five weeks, with PN I don’t go anywhere, do or see anything quickly. If I’m making comparisons with the old Soula, I need much more time as each 24hr day now is equivalent to 1/3… if I’m lucky! I also have my human walking stick, Theo, and another light, adjustable and foldable one. I had a few hundred gels and insoles with me and left any kind of shoe with a heel on it at home (along with any handbags which I ditched a while back anyway). I also took my ice pack and made sure I didn’t need to carry anything. Yes, you guessed it Theo carried everything, he resembles a mother with a baby bag! Our destination and time of travel choice, Italy in spring, was based on being able to wear light clothes (winter garments add weight which means pain) and accommodation was booked in city centres to avoid any daily commuting. Continue Reading

A Dream Came True Today

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(excerpt from my blog: www.soula.com.au)

It happened! We finally came face-to-face. Botticelli’s Birth of Venus and I stood less than a meter apart today in Florence’s Uffizi gallery.

I’ve racked my brain searching for the first time I saw Venus, and I reached back to the age of seven on a very exciting family trip to Cyprus where the country’s motto is, The Island of Venus, and uses the masterpiece freely, or should I say excessively. I’ll take a wild guess and say the majority of Cypriots have no idea of the painting’s actual roots, (and my dear mum counts as one of those people asking if Aphrodite had been taken to Italy when I called her today!).

I’ll take the Wiki def: …the scene was inspired by the text in a Homeric hymn published in Florence in 1488 by the Greek refugee Demetrios Chalcondyles:

Of august gold-wreathed and beautiful
Aphrodite I shall sing to whose domain
belong the battlements of all sea-loved
Cyprus where, blown by the moist breath
of Zephyros, she was carried over the
waves of the resounding sea on soft foam.
The gold-filleted Horae happily welcomed
her and clothed her with heavenly raiment.

What’s also revealed here is the origin of our Jack Russell’s name, Zephyr (who is actually more like a hurricane), but… back to my life moment, back to one of the big, completed circles of my life… I was moved completely. So moved I couldn’t move, stuck to the floorboards with only one way to go, closer, if only everyone else would get out of MY way!! I almost felt I had a special right after loving the piece for most of my life, painting her, drawing her over and over. I almost couldn’t understand why no one could see these facts, and why didn’t they all also know I was the one with the tattoo of Venus on my tail? I contained myself, I was in danger of setting off the alarm and for the life of me wasn’t about to live down to Theo’s expectations.

I had a disappointment, I think she needs a restoration, a clean. Or have I grown to love the reproductions, richer in color, brighter? Against the other Botticelli paintings she was the dullest, I think that’s strange and she has in fact been restored in 1987.

I only left the room because of pain, otherwise I’m sure I would have been there until closing time. Never mind, I’m an official amici degli Uffizi, friend of the Uffizi gallery, for the very purpose of being able to get in and out quickly and unlimitedly.

One more thing, because this was such a huge event I feel drawn to make a bit of a speech. Well not a speech but certainly state thanks and acknowledgement for the treatments, therapies, medication and associated practitioners that allowed me to get here. All those included, I still would not have fulfilled this dream, completed this circle if it weren’t for my life partner, my one and only Theo.

So where to now, what dream next… I think I’ll check the weather and see if there are any ‘twisters’ forecast… I need a lift to see the great Oz. No guesses what I’m going to ask for.

Now let’s get this straight…

Author:

Soula's pain demonstration

So, you think you can see pain hey? Or rather your understanding is, if you don’t see it then it’s not there? Please read on because people like you drive me a little batty…

Now I’m going to need to prepare the ignorant readers because they truly are in for a rude shock… so ignorants, grab yourself a chair or lean somewhere and make sure you have a glass of water on hand. For those in pain and who understand and know exactly what I’m about to say then prepare to feel the load lift and the great sense of relief. Enjoy the moment, feel the empathy coming your way and most importantly, get ready to hit that share button.

Ok so some of you have cheated and glanced further down and read my big announcement, my shock news… ignorants, I hope you were prepared and are still standing.

“Pain is invisible!!!” 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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