Pacing (and Baking)
A brief note on pacing Sometimes pacing means trading a walk to manage baking a cake. I wanted to post this as too many of us managing chronic illness are made [...]
September 27th, 2022
8:43 pm
September 24th, 2022
11:50 am
My Lived Experience at CODA Conference
The Primary Care workshop at this year's CODA Conference was my favorite lived experience contribution to date! The workshop approach was more effective than my other 'standup gigs'. Something has clicked with me lately – I've stepped out of chronic illness's emotional and physical sides and more often partaking in health education. I like it! We must believe that twitches, spasms, toilet function-changing effects, noise, screaming, soreness, stabbing, burning, itching, fatiguing, and draining effects of chronic pain can be controlled. If you had told me this between my first and 4.5-year mark, I would have felt angry and said, 'My issue is severe, far more serious than everyone realises, and my healthcare practitioners are all missing the terrible thing in my body, and I am going to die from it.'
September 7th, 2022
11:51 am
A Venetian Refuelling
I feel completely rejuvenated and jubilant after Theo's and my recent 3-week trip to Italy. Since my spinal cord stim implant, our life and livelihood seachange, and now, with an anti-inflammatory focus, I can feel confident that pain levels will remain right down and my happiness right up. This is a big announcement for my brain.
April 24th, 2022
1:38 pm
Report from ISO
Well, hello, COVID. After all the care, caution and staying in, Omicron finally caught us from no idea where. After all the fear of catching this virus, considering my Inflammasome gene and my chronic health issue, I'm happy to report that I breezed through it! I was abundant with the usual energy that comes to me when social obligation falls away. In addition, the pain levels fell away as they have done with previous colds – can the brain not manage two signals or is a virus some distraction? I went with it. I got stuck into my studio!
March 6th, 2022
12:19 pm
It’s my Birthday
I feel like switching the 'anniversary' thingy to a 'birthday.' I know it sounds oddly celebratory, but I also know that you have read stranger things on this website so remain unafraid to explore this latest idea with you.
September 21st, 2014
9:08 pm
Commitment, sacrifice and granting myself the right permissions
Last week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that: I am therapist free Did I ever think this day would come? Of course I did and I believe that's why I am here. I have had my moments, but what I didn't realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail's shell weight, I began to make progress.
December 20th, 2011
10:02 am
Pain score
...I developed my own pain score which I'm sure when read by anyone without neuropathic pain, will be enough to convince them I'm mad and in fact I must have fallen on my head not my backside. But this site isn't for those people, (go off and play... you don't need to be here and good luck to you).
December 15th, 2011
7:08 am
My pre pain life…
I was active, I had capacity, boundless energy to execute my creative thoughts (and meet the expectations of a full social calendar!). I worked veeeeery long and wonderful days, I walked everywhere, lunching, dining, starting every day at a local cafe, picking up art materials, walking the dog, running the dog, to Carlton, the city, Fitzroy, I skipped through the streets of the great arrondissements of Paris when on annual holidays, and swore by my four day a week yoga routine that unravelled my body and had me feeling like Gumby warm to the ends of my extremities... There was no 'tired', 'sore', 'fatigued', 'have to rest', there was no 'pain'. Like I said, it was bliss.
November 26th, 2011
5:12 am
Why a flower?
Chronic pain is a waste of life’s precious time, its a huge hold up. But if you have to deal with it then you have to find a way to cope through the awful journey and survive it. Before my precious implant (Professor Teddy I love you!!), I couldn’t move much without pain, everything hurt and it hurt all the time. And yet, my gorgeous friends and family kept telling me ‘but you look so good for someone who’s in pain all day!’ (Uum… thanks??).
November 24th, 2011
12:59 am
My clock
When your signals don't function properly you have to come up with new systems to get through the day. This is one I found very useful, it goes something like this: Don't forget to wee!