That would be like me saying ‘goodbye flares’ in my undiagnosed years. You just don’t get to make those decisions when you don’t have explicit knowledge about the beast you are dealing [...]
When viewing my enormous health timeline (pictured), I feel like I've put the information and experience somewhere – it makes it authentic and validates it. Few people validate our experience of living with chronic pain. But this is a way I can validate it and value it. I want others to validate and respect it too. PainTrainMHS helps me do that when I present the information. Showing this to various practitioners and hearing their responses means a great deal to me. It also means a great deal that they grasp an in-depth understanding of my experience. No GP referral letter will ever include this much detail. I always find important information about me has been left out of the letter. All these feelings and activities are part of my pain management strategy – it's not all just about treatment, it's also so much about what I manage day-to-day, and there is so much detail in that day-to-day management. What I also see looking at my timeline is how my appointments have gone from red (bad) to blank (neither here nor there) to green (good). My experience is shown precisely and all it took was a glance. Have a look at how lost I was in the first few years... it was awful!!!!
Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.
Dear Daniel Andrews MP, It's wonderful to see that your recovery is going well. As a 52-year-old person, I like to think that I live and learn from life experiences. I imagine someone in your position would take that sort of approach also and that with your own living and learning and the experience of Victorians you gather realistic references for your ongoing decision making. Taking this terrible recent accident you have had into account (whether a work injury or not), a horrific pandemic and two reports by the Victorian Ombudsman, I have hope and the expectation that you might be in a position to relate far more to Victorian injured workers (of which I am one) than ever before. Being more specific, can you please consider how you would feel: – being questioned about your injury – being told by an insurance company that the reports about your health from your own medical team do not suffice – having investigators photograph you around your home and day-to-day – being sent to an 'independent medical panel to be reassessed and to prove your injury
How I love mycuppajo – the wonderfully beaming human officially known as Joletta Belton. I was introduced to Joletta's blog by a mutual friend, Dr John Quintner (pain educator for Arthritis & Osteoporosis WA and retired pain physician). Jo's experience (science and creativity) makes her documentation about the complex lived experience real, interesting and easy to understand. It's so easy to relate to Jo. Jo and I also share the added frustrating experience of being an 'injured worker' and having to 'defend' our injuries to unjust workers' compensation systems. Reading Jo's blogs and following her tweets makes me feel I'm walking right beside her, sharing in her extraordinary network of advocates, practitioners, professionals, organisations and of course, kindred spirits. Her advocacy and achievements are extraordinary – she is a force driving change throughout the world of chronic pain. I'm so happy to be able to chat with Jo and deliver this video to you all. I know it will be inspiring, energising and informing. I also know that much of the way through you will have beaming smiles on your faces. It's just impossible to speak with Jo and not smile! Jo provided the below resources which we touch on through the chat. You can (and should!) subscribe to mycuppajo.com and also follow Jo via Twitter @MyCuppaJo