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My Health Story Now Live in Your App Store

2022-11-26T20:58:47+11:00June 9th, 2022|Help, My Health Story, Professional|

I, Soula, the way I live and the type of person I am, and my story were fundamental to appointments and essential to my treatment. In addition, I realised my health experience was unique and needed to be understood. Professionals are understanding this a lot more now. On educational health networks, I see this 'tip' all the time now: People with invisible illnesses are more than their diseases And on professional forums, I read how lost practitioners are as to how to help people living with ongoing illnesses (which also explains why so many of us are enduring long-term illnesses!). So are you ready to navigate? Are you ready to put your unique experience forward and be better understood? Then, your story is the most essential part of this change. And if you need some guidance, I'm happy to zoom in if you need online training sessions, or you can email me a 'how do I...' question, and I'll film the answer for you.

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Keeping up my Stamina

2022-11-27T15:30:37+11:00May 8th, 2022|About, Blog, Living|

I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...

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And The Elephant in the Room is… Inflammation!

2023-02-17T10:32:00+11:00February 2nd, 2022|Blog, Help, Professional|

'Pain is a unique experience' we've all heard it, and by now, most of us believe it. But, after viewing my personal genetic report, I'm now sure that pain is a unique experience.  Perhaps it's not even pain for some of us. It's not for me! This genetics investigation exposed the elephant standing by my side the last 15 years – actually, it's been with me all my life but it took an accident to begin its stampede! Official diagnosis – not pain; it's inflammation.  And it always has been! 

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I Found My Pain Definition in Lockdown

2021-07-22T13:45:53+10:00July 21st, 2021|The pain|

Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.

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Presentation: An Approach to Chronic Non-Cancer Pain

2022-11-26T20:58:48+11:00December 29th, 2020|Advocacy, Learn, Personal resources|

In November this year, I was invited to present my pain experience to a group of 40 GP's. The topic was: An Approach to Chronic Non-Cancer Pain and the workshop was facilitated by Dr Paul Grinzi for Murray City Country Coast GP Training. Where does one start when asked to present to 40 pain interested GP's in 20 minutes? There's a great emoji to illustrate the look on my face when I ponder this question. You can well imagine. As an 'expert' in my 'field' 20 minutes to describe 13 years of living with chronic pain of which 4.5 years were spent lost in a forest is still a tough gig. However, this was a presentation to medical professionals. And they know everything, right? .... I've decided to make this video a paid resource. All proceeds go towards funding this website and PainTrain – My Health Summary. What do I talk about in my video? — O:43 My story — 2:50 Investigating pain, research & treatment — 4:26 Diagnosis — 5:55 Advocacy — 7:45 The experience of pain — 8:27 Medication — 9:35 Characteristics of Pain — 10:55 Planning life with chronic pain — 12:09 Pain management — 13:50 PainTrain

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My Lyrica Closure

2020-09-12T15:50:18+10:00September 12th, 2020|Blog, Learn, Professional Resources|

Life's pace is vastly slower if you are living with chronic pain. Anticipated outcomes from things like new treatments, explanations about causes of pain, pain research, realisations about personal ideas relating to my own experience all take months, years and even over a decade to arrive. Yesterday was the day I finally received some closure about the wicked Lyrica. There's been a build-up of medication reporting this past year but none of it hit the spot like The Project's report. I love the reporting on this show – it's one of the few programs that brings me to the TV. While watching last night, I got that bullseye feeling: I'm not crazy! How often does a person living with pain come to this blissful realisation? Not often enough I can tell you.

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My Health Story now in your app store

MHS tablet

Pelvic Sense

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Soula Mantalvanos created pudendalnerve.com.au to advocate for people living with Pudendal Neuralgia and other invisible and chronic illnesses. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. The website includes topics about chronic pain, pelvic pain, pudendal neuralgia, injured workers, workers compensation, inflammation, chronic illness, patient empowerment, self efficacy, better healthcare, nerve pain, various treatments such as nerve blocks, neurostimulation implants and the courage that is required for self management. All information on this website is a account of Soula's lived experience and should not be taken in anyway as advice or recommended treatment for any other person or healthcare professional. Chronic illness is a unique experience and therefore requires better understanding and tailored care. © Copyright 2023 -    |   pudendalnerve.com.au created by ooi   |
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