Yippee!! Not! It’s too hard.
I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.
Suck it up!? Um…,
And that word my dear readers, is how I manage this holiday time.
I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.
Here it is again:
And with that comes,
I’m sorry, I can’t do ‘that’
With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.
But of course it isn’t so easy. There are a few sad bits that come with ‘no’. (more…)
(View the story online http://www.abc.net.au/7.30/content/2016/s4547621.htm)
Tune in tonight for my interview in regard to navigating practitioners with a chronic illness. On the ABC’s 7:30 report (yes, on ABC at 7:30)
Patient’s have a voice and patient’s can help other patients by reviewing the professionals (and not!) whom they’ve seen. Best of all, patients can do this with their own patient, laymen language.
I wish I had read ‘This practitioner helped me with my sitting pain’ somewhere on the net. Perhaps it would not have taken me 4.5 years to be diagnosed.
Love the idea of whitecoat.com.au. Love the idea of patients sharing their experiences and encouraging great care.
Most of all, it puts the patient in the driver’s seat, eliminates the pressure for GP’s to know everything which is impossible. It’s a patient’s job to look after their health issue and with resources like whitecoat.com.au that can be done.
And no, I never get paid for interviews or to plug someone’s service – this is my opinion.
Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.
Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!
Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. (more…)
Ever wondered what a stim’s controller’s day looks like?
Firstly, let me clarify that I’m talking about my Boston Scientific Sacral Stimulation Implant controller (BSSSIC), not my St. Jude’s Peripheral Stimulation Implant controller (SJPSIC otherwise known as, the one that saved my life).
I’m experimenting at this 7 month post implant stage in order to figure out whether I need the SJPSIC by not using it at all. Two devices in one backside cheek is quite tricky at times. Someone without a chronic health issue would probably complain endlessly as this situation does have a few uncomfortable limitations. For someone with a chronic health issue though, that side of things, is a piece of cake in comparison – almost welcoming when you think of the benefits that come with it.
And one more thing, before I go on – no! I won’t turn both on for your entertainment purposes.
A controller has a fair job to do – it’s committed 24/7. (more…)
My new stim’s changed everything.
I’m grateful. Can you imagine if the whole process (from trial to permanent implant) hadn’t change anything?
In addition to the stim changing everything, I’m living a whole new life that Theo and I attempted to plan in great detail.
We’re trying to make me the best I can be so we can be… someway, somehow.
Life is unrecognisable and the path ahead is totally unfamiliar. To top that off, I need to figure out exactly how I can best be. I have choices.
After living with my sacral stim for six months, I can confirm the following: (more…)
I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.
It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.
It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.
Back to the TV.
I’m guessing this isn’t going to be my most popular post.
I know it won’t be because I view my website and the social media stats and both indicate whenever I blog a ‘to do’ or a ‘too hard’ kind of blog you all seem to drop off.
I completely understand. (more…)
True! Theo and I made a huge life move as many of you have read.
Our transition began over a year ago when we escaped to Tasmania to figure out how to manage life with chronic pain.
It was the best thing we did even though terrifying at the time.
In just over a year, we have spent four months in Tasmania, returned to our dear Collingwood, sold our warehouse sanctuary, removed ourselves from our main business (as it was impossible for me to do the previous design work), planned a new lifestyle, and began a new venture with the utmost faith and backing of some very dear arty friends and some special few design clients.
Again, terrifying. (more…)
It’s taken almost 9 years but I’ve realised that chronic pain requires alot of study – dare I say never-ending study? I believe my research for pain relief for chronic pain may be paving the way for a thesis!
I’ve had a good chat and stare with myself in the mirror, allowed the gut feeling to sink (for just a few seconds), called on gratitude, and here I present to you (with a backside that will soon be comparable in value to Jlo’s) another section of Soula’s Pain Management thesis.
Let’s call it Chapter 4 (approx.)
Patient: Soula (me) Age: 46 (& a few days) Chronic pain since: Mar/07 Injury: Drop to concrete floor from exploding fitball (more…)