Gielgud was the first to go: left hand, ring finger. Sudden pain at the base of my fingers at 3.00 or 4.00 a.m. and then, thanks to the nightlight, I saw that my finger had changed shape.
Normal finger to swan neck, just like that. Shock and tears and my lovely fiancé holding me tight.
Two more fingers on the same hand followed, almost immediately. They weren’t as bad, but they certainly weren’t straight.
Oh, God, oh, God, I thought. It’s begun. My fingers are deforming.
To my fiancé, I said: “I’m sorry for crying.”
“I’d cry, too, if my fingers did that,” he said, and held me tighter.
The pain started some months earlier, late in my pregnancy with my second child. I woke in the night with severe pain in both my hands. Sleep-baffled, I assumed I must have been lying on them, gave them a wriggle, and fell back into exhausted sleep.
The next night, I woke with pain in my hands again. This time, I knew I hadn’t slept on them: something odd was happening.
When I next saw my midwife for a checkup, I complained about the night pains, and also noted my swollen hands and feet, my stiff and sausage-like fingers and toes.
“Carpal tunnel,” she said of the pain, “very common in pregnancy.” And, since my blood pressure was fine, I was told not to worry.
Some months after my son was born, when the pain and stiffness in my hands and feet (including my ankles, wrists, fingers and toes) had spread to my knees, elbows, shoulders and the base of my neck, I finally persuaded my doctor to refer me to a rheumatologist.
“That wasn’t carpal tunnel,” the rheumatologist said. “That sounds like inflammatory arthritis.”
The tricky part was – and still is – getting the right diagnosis. Initially, the suspect was seronegative rheumatoid arthritis.
“Classical presentation,” said one rheumatologist.
“That’s what it looks like,” said another, “although there’s a lot more ligament and tendon involvement than we’d expect, so we’ll need to look at whether there might be anything else going on there.”
It’s the ligament and tendon issue that’s seen my fingers deform, and two of my toes collapse. I have finger splints (useless) and orthotics (saviours).
I have rheumatologists with conflicting opinions, and no care plan as a result.
I am, explained a professor, one of those people whose diagnosis will be difficult. I will have to be patient.
I named my ring finger Gielgud, after the violent swan in Sue Townsend’s hilarious Adrian Mole and the Weapons of Mass Destruction.
On bad days, when I’m struggling to pick up a pen or type, or when I’m thinking of the knitting and crochet I can’t finish for my small son, I imagine my fingers honking and flapping with rage. Gielgud and his gang, eyes blazing, beaks sharp.
Think of all the power in my hands! After all, to quote so many of Sue Townsend’s characters, “A swan can break a man’s arm, you know!”