The builder popped over to see me after work the other day. I was on my sofa, floored by MS fatigue, snuggled into my duvet, watching trashy tv.
As soon as he walked in and saw me, he took a step back, a look of dismay on his face, ‘God, I feel depressed just seeing you there like that.’
If he’d slapped me across the face with a wet fish, it couldn’t have hurt more. I protested, made a joke about it, but it touched a very raw nerve.
I don’t want to be depressing. I don’t want to be that person on the other side of an invisible divide. I saw myself through his eyes and didn’t like what I saw. MS has shoved me under ice. I look the same, but I’m trapped, banging on that ice, yelling pointlessly for my friends on the surface to hear me.
I’ve had to absorb a lot of changes into my life since MS smashed into it like an unwanted gatecrasher at my party. Some of them are huge, but most are small changes I now take for granted – the afternoon naps, the slower pace of walking, the brain mush. To me they are now normal. But seeing myself from someone else’s viewpoint brings me up short. I can see just how much I have changed and I hate it.
Before MS, I was always on the go. I travelled the world, had incredible adventures, and I’ve been strong, independent and vibrant. Looking at myself now, I can see I have I’ve become a shadow of that. My house has become my refuge and I spend far too much time in it. It is comforting. No one can see me trip, hold on to the banisters, drop another glass. I feel safe here.
I know the builder didn’t mean to hurt with his comment. I probably needed to hear it. I want to get my zest for life back. MS is a hefty ball and chain to drag through life, but at least if I’m facing forward, I can’t see it, even though I know it’s there.
At the moment I am standing outside the party, nose pressed to the window, watching everyone else’s lives unfolding. It’s about time I joined in again.