I was enjoying a lightsaber duel with my son yesterday when, in a moment of lapsed concentration, a flash of green sliced through my leg, signifying my defeat. “I’ve cut off your leg!” my son triumphantly declared, to which I responded with mock distress. “Anyway, Mummy, it’s OK because you have MS and now I’ve chopped off your leg you won’t have any more pain”.
I must admit, in moments of complete desperation, it has crossed my mind that I’d be better off without my legs. But on reflection, I think I’d much rather keep my legs – numbness, spasms ‘n’ all.
Well, I say I’d rather keep them. It quite often feels as though I have actually lost them, particularly my left leg, which packed up and left during a relapse 2 years ago and has never fully returned. I’ve spent the last 2 years trying to accept that I’ll be dragging my semi-paralysed leg around forever more, never thinking that there was anything to be done about it. That was until I was given a 5 day course of high dose steroids shortly before Christmas. My neuro issued them with a warning that they probably wouldn’t work and that if they did work it would likely be temporary. Still, I was willing to suffer a week of bloated nausea on the off chance that they would offer some reprieve. Desperation does that.
Five days in and I felt wretched. I hadn’t consciously pinned too much hope on the steroids, and yet I found myself feeling utterly deflated. Having switched treatment in the summer, from Tysabri to Ocrevus, I’ve sat by and watched as my MS has gone from bad to worse. Nothing seems to be working and I’m struggling to come to terms, all over again, with a diagnosis that I’ve lived with for 11 years.
But then, suddenly, as I was sat at my desk working, I noticed that my leg felt lighter. I raised my left leg and there was only a little resistance. I tapped my left foot and for the first time in over 2 years it tapped merrily along without a fight. I sat there, stunned. My leg was back. My LEG was BACK. MY LEG WAS BACK!! Oh, blissful joy, please let it last.
It didn’t last. After barely 2 days my leg was back to its old antics. Now, as I sit here writing, I wonder if it was worth it. Would it have been less cruel to have never felt the relief?
No. I think it was worth it so that I could experience the sense of hope it brought, if only for that moment.