To everyone else, just not to me.
It screams and yells in my face but is deftly hidden within my body, keeping its deviant symptoms tucked safely away, all the while wreaking havoc.
To other people, I could be a malingerer, a fantasist. A bore.
The biggest problem is in the detail; the description – try explaining in plain English what it feels like when an MS lesion hits the speech part of your brain and you can’t string a simple sentence together?
Or when your hands decide to go on strike; it’s no fun pouring a kettle of hot water over your hands instead of the coffee cup.
Then there’s the biggies – fatigue, balance, foot drop, brain fog. All perhaps innocuous to others but they add up to a walking, talking disaster area for me. Put them all in the MS Blender at once and I am a joke.
It’s why I shy away from actual real-life shopping. Too much choice for my brain, likelihood of dropping stuff, tripping over shiny floor tiles, looking drunk, fumbling with change at the check-out. Gah. I am the person my mother warned me about.
What about the nerve pain? The constant jangling, buzzing, painful sensations, as if I’m trapped in some ghastly game of Operation, unable to fish out the funny bone. Over and over again.
MS fatigue divides my day in half – great first thing in the morning, useless when the sun goes down. Foot drop follows me wherever I go and I’ve made friends with my local cobbler – as I hand over yet another pair of flat shoes/boots to be re-soled. And as for brain fog – it’s a plague. As I’m sure I mentioned earlier. And maybe before that?
It all adds up to a pretty depressing picture. And it is.
Or could be.
I’m adapting, however slowly. I’m getting used to the curved-swerve-followed-by-the ‘whoops‘. I write endless notes to myself, to jog my battered memory. I hold the bannister when I walk downstairs and I threw out the dodgy shoes long ago. When I trip, I now do it with grace.
As MS takes a new and unexpected turn, so will I, and force it to do things it’s never had to do before, such as our current Master’s module in ‘New and Experimental Writing’.
That’ll teach it.