Off you go 2021…

By |2021-12-16T13:17:55+11:00December 16th, 2021|Blog|

I'm so hopeful for 2022 because I can now so confidently say, 'I can't make it IRL, can we zoom?' without apology or explanation. And, this year it also got a whole lot easier to slap down my cushion in the middle of a full restaurant... and sit on it. It's also become easier for others to understand why I couldn't be somewhere and it became hilarious listening to people rave about online shopping (hello, we've been doing it for years, even before it was all setup online officially). I bet you can rattle off many examples of feelings of inclusiveness – even the word inclusiveness managed to pop up on this website for the first time, where until now, all we could talk about were our exclusions and how foreign we felt within the world.

Self Management Navigator Tool

By |2021-09-20T11:39:57+10:00September 20th, 2021|Blog, Learn, Professional Resources|

I've been on the communication case for a while now with PainTrain My Health Summary (PainTrain MHS), as you all know. So when my dear friend (sleuth) and Advisory Member of PainTrain MHS, Mandy Mercuri, sent me news of the Self-Management Navigator Tool, I was thrilled to see it. My professional communication background alerted me throughout my misdiagnosed years (and beyond) that something needed to be done about the ongoing appointments we all have to endure. In my view, the distress of miscommunication, not feeling understood, blank stares, the expense of wasted appointments, and the rest that you are all too familiar with is critical to helping people manage their illnesses.  This type of approach is now being embraced, and it will be unavoidable for patients to adopt a new way forward if they are expecting the best care.  Sadly those living with an invisible illness can not be passive patients. We have to create and navigate our own individual paths. As if we need more work! But it's genuinely the only way forward.

PainTrainMHS: Patient-Controlled InformationSharing Instrument

By |2021-07-29T21:02:21+10:00July 29th, 2021|Help, Pain Train, Professional|

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!!!!

I Found My Pain Definition in Lockdown

By |2021-07-22T13:45:53+10:00July 21st, 2021|The pain|

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.

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