Body of Pain

It feels as if my body’s gone on strike. Or maybe more than that, it’s as if it’s engaged in some sort of direct action against me.

Since January I’ve been swimming at my local hydrotherapy pool on most days. Also, at the start of the year I had some improvements made to my wheelchair to make it more comfortable. Together this seemed to help reduce the intensity of my chronic pain, and while it was still very much present I had fewer unbearable spikes.

I’ve also been feeling less sick in the last few months. I put this down to the restricted diet the dietician at my local hospital put me on. One way or another after a couple of difficult years my health felt more stable, and while the improvements were small they felt significant.

But over the last two weeks my health has nose-dived, and without any identifiable reason. My pain goes from being in the background pain to absolute agony in minutes and with no warning. It’s also pushing into new parts of my body.

Earlier I was imagining the pain as sets of three-dimensional shapes stacked on top of each other, each with different characteristics. It’s as if more and more shapes are added to the tower of pain until they inevitably all come crashing down – Jenga style. I did a drawing to illustrate this:

A digitised drawing with a background of different coloured spiky shapes (purple, light blue, dark blue, pink, yellow, orange and pink). White writing at the top says 'Body of Pain'. Four figures of Touretteshero and her wheelchair can be seen with different colourful blocks (red, blue, yellow, green and purple) making up the pain in her body. A key at the bottom reads: 5. Solid Pain - Intense (red block). 4. Pointy Pain - High (blue block). 3. Flat Pain - Moderate (yellow block). 2. Frayed Pain - Present (green block). 1. Shapeless pain - Low (purple block).

When my pain’s intense it’s hard to concentrate, speak, or do anything for myself. It’s as if everything else has to shut down for me just to keep going. This is unpleasant and deeply frustrating. Today was a gorgeous sunny day. We were working on a new project in Deptford. I managed to make it to the session but as soon as I arrived I felt sore and unwell, so while the rest of the team worked in the garden, talking through and developing new ideas, I slept uncomfortably on a mat in a meeting room above the library.

I feel so flat. I’ve got no idea why things have deteriorated, but I have no choice other than to keep going, make sensible decisions, and try to listen and respond to my body. I just want to get on with making art, being an aunty, and enjoying the summer.

While I might be fed up with how I’m feeling, I also feel well cared for by those around me. I’m incredibly lucky to work in an environment where my fluctuating health is understood.

I’ve got everything crossed that this is just a blip and that I’ll get back on track soon. And if not I know that I’m not alone and that along with my friends, family and colleagues I’ll be able to find a new way through.

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