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Nothing about us without us

In late 2020, I participated in a New Zealand Pain Society (NZPS) webinar on why it is crucial to consider lived experience in pain management: “Pain education webinar on “Nothing about us without us” – A coalition of lived experience experts in Aotearoa New Zealand.” The NZPS has very kindly made this webinar available for …

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Chronic mess?

The trickiness of chronic pain is its chronic-ness. It’s ongoing, unending. Auto-correct suggested chronic mess for chronic-ness, that seems sadly apt for how I feel and sometimes how I feel I am seen. Researchers use the words chronic and persistent to describe pain, fatigue, nausea, itch, ulcers, wounds, stress, sadness, fear… The whole Pandora’s box …

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Doing research on pain

In this big pinch, I’m going to describe some of my PhD work that looked at attention in pain, as a concrete example of the research process to understand why pain makes it hard to think. Words in blue bold text are research jargon; I’ll define these as we go along. Science is a team …

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My brain closet is full

I said when I started this blog that I wouldn’t put pressure on myself if I didn’t write regularly. All in all, I’d give myself a B+. Very good performance, but not excellent1. I haven’t posted since August and have felt only a little guilty about it. I often feel guilty when I don’t do …

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Sad, not happy

Question from health professional: “How do you feel?” Answer from me: “Sad… not happy”. Pain is multidimensional. The experience of pain is not generated from physiological processes alone. Considering the multidimensionality of pain is especially important for both 1) understanding why chronic pain has such a large impact on peoples’ lives, and 2) for developing …

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Hiding pain

This pinch sets up my next two pinches. I am now open about my pain with my family, friends, colleagues and even people I’ve just met. This is not how I was for most of the time I’ve had chronic pain. For a long time the way I handled my pain was to tell myself …

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Thoughts (2)

I drafted this pinch on my phone one evening. I’ve left the first half as I wrote it in the moment. Pain in the moment It is 6.20pm on a Tuesday evening and I’m struggling. My pain has flared up over the last week. I’m stuck in a loop where I’m sore so I’m not …

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Fibromyalgia (1)

I planned to make this post live on Friday. However today, Tuesday 12th May, is Fibromyalgia Awareness Day. The topic seemed appropriate. My chronic pain has the diagnosis fibromyalgia. I can see that I’m going to write many pinches about fibromyalgia as this is my pain condition. I’ve labelled this pinch “fibromyalgia (1)” as I …

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