Here are some thoughts, about pain: familiar, unbearable and new pain. How I twist myself through preoccupations: with pain, ignoring pain, soaring above pain. I’ve done a quick scan of my current pain: there are familiar messages coming from my feet, right knee and the side of my head, like irritating adverts for products I will never want or need. There’s a newish twinge in my right elbow, down to my wrist. My neck whines as I look upwards, to pause and think. The sweet acid taste of reflux, as if I have eaten fruit sweets all morning, lurks around my throat and burns down, to very sore part I fear, deep inside me. My ribs post their presence too: I forget about them. My back grumbles. I clench my fists and my hands obligingly shoot their arthritic reminders. Whatever I do next, my hands set the pace. I have been feeling sad, revisiting memories of people who are leaving or who have left my life, and thinking about how my life will end. This, too, is painful.
I am preoccupied when pain starts to get unbearable. The pain seizes my thoughts and freezes my feelings, except for aching, stabbing, gnawing, throbbing and pressing sensations. The thoughts are catastrophic, drawing on every awful experience I’ve had with my ANCA vasculitis, mashing them together in a horrific prediction, such as an unscheduled hospital visit boiling out of control. With effort I can shake off this pre-occupation. I fetch camomile tea, headphones and my crochet, forcing the fears and pain away as I loop wool over my crochet hook, sip the tea and listen to a radio programme. In bad times I keep these things close by, so I am prepared. The trouble with these occupational remedies is they work for me but they probably won’t work for you, or someone you know. After all, I’ve been drinking camomile tea all my adult life to soothe, relax and comfort myself. But I’ve never forgotten that others are repelled by the smell, and some by the tea bag. It looks like baby’s poo, I was told once.
New pain demands thorough exploration, a different kind of preoccupation, with creating questions and testing them out. In the clinics, I find myself suggesting to my friends that they leave me for a while. Partly this is due to the thinking I am doing, to summarise my findings for the doctors. Did this make it worse? Did that make it better? How long? How often? It is so frustrating when it’s difficult to answer these questions. Subtle shifts in routine often give clues about how new pain has affected me. Recently I stopped retreating back to bed with a cup of tea in the morning because the stairs were so painful to climb. I stopped using the local train for a while, because waiting on the platform pushed suicidal thoughts into my head, unwelcome painful thoughts. Even so, I am frequently disappointed by my own lack of occupational focus in creating questions. So often I think first of medication changes, diet, the weather.
Yet an occupational focus is profoundly helpful. Analysing changes to my habits and routine helps label a new pain. Heaving myself out of preoccupation with unbearable pain is possible with my occupational rescue kit. And there’s another kind of preoccupation that moves beyond pain, soaring to enjoyment and engagement in something different. For me, this works best if I am with other people, in a friendly and focused place like an art workshop or a cinema. Often when I’m out with my dog, I will be preoccupied by the grinding pain in my feet and ankles, or painful thoughts about having an incurable disease. Another dog walker will join us for a while. And when I get home to rest, I realise that I’ve forgotten the pain. It hasn’t gone away but I have been otherwise engaged.