Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.
The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.
Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.
Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.
What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.
But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.