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:
À bientôt… and thank YOU!