‘Reading’ books, books and more books
Well, not entirely reading; using my ears instead! Where have I been? Seriously, how did I not get into Audible sooner? You would struggle to get me to switch my daily routine of listening to [...]
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A glorious facade – just look at me!
(Photograph Ivan Kemp) Do you like this picture of me? When I see this photo of myself, I see someone proud and accomplished. My posture reflects inner strength and confidence – I am the gallery [...]
My Health Story Friends, Your New Care Network
Meet MHS Friend, Wise Psychology Over my 16-year period navigating this awful forest, I've met some pretty amazing people. I've also met many who have no idea about treating chronic health issues, and they will never become MHS Friends, I can tell you. I'm going to filter the good ones. And you are welcome to help me - pop me an email with your best! Or if you are a service or group and you think, 'hey that's me!' please also contact me or read more here. So let's start with mental health support you can receive via telehealth within a week. It's not uncommon for MHS subscribers to feel hesitant about either joining or discussing their health stories with a healthcare provider via MHS as the practitioner might not be keen on embracing new technology, or they say they ‘don’t have time’, or the patient is too intimidated even to ask. Well, MHS Friend, Wise Psychology, is not like that. In fact, they want to read about your lived experience and learn as much as possible before your appointment.
Introducing Nerita Lewis, Founder of Jaspen, a new social platform
In 2011 when I built pudendalnerve.com.au, the internet was starved of helpful communities and resources. It was the very reason my advocacy began. I didn't want anyone to be as lost as I was on my search for important health information. There were few online portals where people could connect, and the only health information available was through science journals – no individual could understand them! Health orgs that did have a web presence seemed not to have a dialogue with the consumers they claimed to exist for. Thank goodness that's changing, but we still have a way to go as the usual questions remain; What is chronic pain? How can we manage chronic pain and its symptoms and effects? What are the best treatments, and why is there such a lack of understanding? etc This is where Nerita Lewis comes in with her idea to democratise healthcare with Jaspen.
Soula’s Coconutty Granola
I am skipping more breakfasts; my body manages far better (cutting out goat's feta on the seedy cracker). The less work my body does in the morning, the happier it seems. No pressure! An empty belly is no pressure on the gut. Feeling hungry does not cause pressure and is easier to deal with than the pain effects. I treat myself a couple of times a week to a croissant. On those days, I avoid carbs for the rest of that day. Carbs have to be in very little moderation for me. So finding a non-carb lunch is important, and it had to be easy to put together. Cereal! Well, most cereals have loads of carbs. Granola! A great idea; make a batch and just add fruit. But wait! Most granola mixes have heaps of sugar (and pepitas, which I am allergic to).
WorkSafe Victoria Instructed to Treat Injured Workers With Dignity and Respect
WorkSafe Victoria Instructed to Treat Injured Workers With Dignity and Respect My letter has arrived informing me that I am one of the 1,500 long-term injured workers WorkSafe is contacting. So, I had to learn what this was about. It would be best if you were prepared in these distressing situations even though you anticipate the return to the fire pit. A letter from WorkSafe is never a simple letter. It will never be pleasant, never hopeful and nor will it ever be about justice, support or care. Letters from WorkSafe are about WorkSafe and steered at ticking their boxes. Injured workers now have to help WorkSafe clean up their mess.
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.
Ian Cleary Lightning Process: Take Your First Practical Step
I have posted much info about Ian Cleary and the Lightning Process. Like my DNA investigation, this costs quite a bit but would be very worth it. After recently reconnecting with Ian Cleary, I learned [...]
Keeping up my Stamina
I was going to title this blog Fatigue, but after reviewing it repeatedly, I decided to title it Stamina instead. It took me years to get to 'managing'. Now I have transitioned to pacing. As stated in my previous post, I'm living now. I'm not in a passive state watching and being attacked by an unpleasant experience. It wasn't easy getting to the state of 'management'. There are so many 'have to' activities – we can't avoid these. When I explain my 'have to' activities such as showering, making a coffee, sitting/standing all day, dressing, etc., people look at me bewildered, but you'll get me. Until this fight is experienced, one can't understand that day-to-day activities can strip your energy and count as 'activity'. It feels insane when faced with this realisation. But I have found a way...
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!