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Excusing Myself For a Bit…

Nothing like another anniversary to prompt a newsletter. Oh, and a new implant!

It’s been a terrible few months. Yes, I’m alright. I’m always alright. Glass is always half full, although it is getting less full. I’m getting tired.

Twelve years and counting now and although Theo and I are establishing a new life, the sacrifices are becoming harder to live with… without.

I’m only feeling disappointed because my hope has been interrupted. I was pacing up so well and the thing is, I’ll never know what popped this time and caused the glitch to my sacral stimulation implant.

I’m finding it draining to advocate and blog my experiences. But also, I don’t feel my voice is as necessary anymore.

There’s alot of help out there now… if someone wants it. It’s too hard to keep documenting this story.

I also spend many moments feeling the more we learn, the less we know.

What I want to do with this lived experience is more significant than blog my inabilities and unique experiences. It’s tiring being a story, on a journey, that at the core, doesn’t help another person. I realise it helps professionals and I feel I’ve done enough of that. But each of us need to find our own way through chronic pain.

And what makes the story telling and advocacy even harder, is that it greatly impacts on my capacity to earn a living. As much as the patient experience is valued it is always expected to be shared for free. I can’t afford that anymore.

Above all, I want to be known for my creativity and where it aligned with chronic pain to influence behaviour change – specifically the structure of appointments.

Of all the industries out there, health’s communication and appointment structure is lacking in evolution I believe. We are communicating in a most primitive (and very expensive) way. Hence my efforts will mostly be spent on PainTrain – My Health Summary.

Having stated the above, and taking seriously my recovery requirements and my limited capacity for income, I’m now going to take the chance to excuse myself for a bit.

I cut to the chase on the home page of pudendalnerve.com.au. It’s not what anyone would want to read or want to do if they’re lost in chronic pain. I would not have believed that my health issue was complex.

Whether you’re a professional or someone living with chronic pain, I’ll leave you with my top 4 resources for finding better pain education, better management, and better treatment:

Pain Learn | Pain Do | Pain Manage | Pain Specialists

À bientôt… and thank YOU!

Well wishes welcome via donation to my personal fundraiser for #PainRevolution or sign up to PainTrain for the month of March and I’ll donate $6 from your subscription.

By |2019-03-02T09:33:17+10:00March 2nd, 2019|Advocacy, Blog|4 Comments

4 Comments

  1. Lisa April 9, 2019 at 6:53 pm - Reply

    Hi Soula. I fully undetstand and likewise it has been a struggle for me, your old friend from aworkcovervictimsdiary. I have been very inactive and recently all got put on hold as I broke (after complete dislocation) my total reverse shoulder prosthesis. Upcoming major ortho vasc and neuro surgery. ..and here we go again… I wanted to ask you a huge favour and that is to let your interested readers know that my blog was compromised on 22 march with the theft/hack and ransom of my domain! So no option but purchase a new one and aworkcovervictimsdiary can now be found on http://www.aworkcovervictimsdiary.com.au (so .au at the end). It would be nice to catch up after all these years… Thank you and my thoughts are with you.

  2. Leonette Bernard March 3, 2019 at 1:55 pm - Reply

    Hi Soula,
    I’ve been following your blog for a few years now ( I have had diagnosed Pudendal Neuralgia for 71/2 years) and I will certainly miss hearing of your experiences. However, I totally understand your needing a break. It must take up a big chunk of your time.
    I hope we hear from you again from time to time! Your voice IS still needed!
    All the best
    Leonette Bernard

  3. Jay March 2, 2019 at 11:10 pm - Reply

    Hi Soula, your story has helped me. I only started this chronic pain journey in 2017. I think I stumbled across your website in a desperate search for answers. I’m on worker’s comp & the system is a nightmare. I’m also an artist & yes the most frustrating thing for me is my lack of productivity. I’m so slow at getting anything done these days. All my drawings seem to go wonky… maybe from the meds?? I’m single & I worry about how I will be able to make enough money to support myself in the future. I love that you told your story in an art book. That’s really inspiring. I can understand you needing a break. I’m so weary from this journey I don’t know how others hang in there so long!

    I think I’ll be getting an implant this year. I’m nervous about it, but hopefully it will help. I’ve read that they wriggle about & disconnect all the time, so it’s probably nothing you did, but frustrating all the same!

    I hope you find some time of refreshing & breaks from the pain & that your capacity to earn is blessed & multipled day by day.

  4. Barry Segel March 2, 2019 at 10:16 am - Reply

    Souls
    Sorry that your pain had gotten worse.
    You will always have my support and prayers.
    We have moved to North Carolina to be near our 9nly Grandchild- a sweet beautiful and happy girl of 3 1/2.
    Each time she smiles, I smile.
    I am hopefully done with surgeries, and must find a way to lose weight and be more mobile. A trip to Disney World is scheduled for her 4th Birthday.
    Be well and Gods-Speed
    Barry

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