Opinion: Melissa Todd – When chronic pain shrinks your world

Mr Todd and I have been married two and a half years now, and he’s been ill for all of them. It started as a vague malaise, an aching in the joints, particularly the shoulders, made worse by the cold, or stress; we assumed it was simply old age.

Eight months later, he couldn’t work.  He’s always written plays and acted, so we thought we’d start a theatre company,  take his play on tour, which we did for six months: at the end of it, sitting in the car made him scream with pain. Now sitting to write makes him scream with pain too. Thirty years a postman, walking 13 miles a day; now the end of the road presents a challenge.

His world – and, in consequence, mine – has shrunk to the space between bathroom and bed. I feel guilty coming home to reel off the things I’ve done, the people I’ve met, the conversations I’ve had; instead our evenings revolve around his pain. How is it, I’ll ask, every hour or so. Is it bad? I’m so sorry. I say I’m so sorry, over and over, like a pre-programmed doll, because there’s nothing else I can say. Did you sleep? He can’t sleep. The pain wakes him every twenty minutes. I’m so sorry.

Chronic pain is insanely boring. It colours everything. You can never entirely forget yourself, immerse yourself in a film or book; it’s always there, nagging at you, frightening, clouding your hopes for the future, like a sewage pipe in the sea, but most of all, it’s boring beyond words. Can you imagine a worse fate than to be unable to rise above the corporeal and mundane, lose yourself in a sublime moment, a symphony, a sunset?

I can no longer touch him. The lightest touch on his arm can send him into paroxysms of agony. It’s horrible to watch someone you love suffer, endlessly, pointlessly, with no hope of reprieve. The pain relief he’s taken has given him a stomach ulcer, so he can only drink water, eat the blandest of foods. I can’t even cook for him anymore. My options for showing love have been reduced to that endless, bland, I’m so sorry, clogging my throat, sour as bile.

I’m told gratitude makes you cheerier, but gratitude doesn’t come readily to me. Instead I console myself with the flip side practise of imagining how much worse life could treat us. If I couldn’t earn enough to support us both, say, or if he lost his sense of humour, or mind; or if I hadn’t known him, briefly, at his best.

The medical profession can’t agree a diagnosis, although polymyalgia seems likeliest. He’s having a full body scan which should provide some answers; then more powerful medication which should at least nobble him in a new way, with a fascinating array of new side-effects.

I wish I had a religious faith that could help me find meaning in the suffering. The masterstroke of Christianity – the reason it’s survived so many centuries – is the way it helps you make sense of suffering, see some purpose behind it. Suffering doesn’t sanctify otherwise; it makes you furious and bitter at the brutal random unfairness of fate.

Enjoy what you have, your strong limbs, your cup of coffee, your future, for at any moment fate, that capricious little tart, might rise up and decide to steal the lot.