Foam! I Found Foam! Am I excited today! As I progress this path of pain, I retain my non-negotiable pointers – one of which is my need for my custom made seating aid. I would love to ditch this damn thing from under my backside and from my clutch every time I go out for a seated event, but it's just too valuable for my capacity. Figuring out the big 'dangers in me' (remember we talked about DIMS and SIMS?) has been key to my pacing forward.
Being resourceful is what makes the difference — it is so hard working life out. But Theo and do it. We burrow down and we make it happen. There's no choice... or rather there was but I didn't want a fulltime WorkSafe paycheck. Of course, I think about that. And of course, I often call myself stupid for declining it – I was safe! I had that full-time paycheck for the rest of my life. But creativity and sharing the day with Theo is so precious to both of us. Even with the complexities and risks, it appears to be the only way Theo and I can live. For this, I am grateful! So I'll stop complaining now and go on with what I've been doing and what I am achieving. It's all good! I'm moving. Life is in forward motion after being so still for so long – a decade at least!
It's an act of forwards and backwards, sideways and a lot of down ways. It's really hard work. The less it yells, the better I feel and only then can I do more and pace up. The more I poke it, the worse it gets. The worse it gets, the deeper into the hole I go and further away from coming back out! I don't just pay with pain, I pay with time – lifetime!
MEDIA RELEASE 17 June 2019 At last – A national plan for better pain management Painaustralia has today launched the new National Strategic Action Plan for Pain Management. Millions of Australians live [...]
It will take one whole year until stim and I get to know each other. I've done this twice before, I know! There are programs to explore, capacity to pace, and sitting to try without the aids. I want to hop in a train and a tram, and hop off in the city without an agenda and limits. I want to catch up with my dearest friends, some whom I've not seen since I left Melbourne. We've been living off parcels, emails and the phone, and that really hurts.
Where to next? (Part 2/3) I knew there was something seriously wrong with my sacral stim implant. By the time that information was confirmed, my mind had run off a few thousand [...]
Then things got even more strange. There was heat, radiating heat where the IPG is, in my face and also other strange feelings that not only added to my pain issues but it made me turn my stim off, more than on! Weird.
I'm not exactly enthused about health admin. There's already enough admin and digital filing to do in life. But I've found that my PT health summary is saving me, not only admin time, but alot of stress having to remember details of my experience. I've included a self portrait for my specialist today!
PainTrain has followed Pain Revolution very closely over the years and its this research with Soula's experience that has driven the PainTrain concept. We love having your support all the way Soula! Your [...]
(Image from my book, Art & Chronic Pain – A Self Portrait) Navigating the horrific pain journey is complex enough. Patients need GPs who steer them to appropriate treaters via the shortest [...]
