I’m staring out, watching the world go by. Rushing, racing, living, breathing – life. But I’m struggling. I’m really struggling – struggling to make sense of all this. How this disease can just stomp in and rob you of so much in what seems like a split second. It’s so unfair.
Long gone is my ambition to run a marathon – the pain I used to feel after a long 15km+ run isn’t even close to the pain I now feel after 15 minutes on my feet unsupported. To go from that to this in a year is tough to deal with – life feels like a marathon right now.
I don’t care that I’m currently using a stick to get about. What I do care about is the pain. The pain that gnaws away at everything – it’s always there, lurking in the shadows. The longer I’m on my feet, the more it punishes me – the girl who loved running and walking for miles, soaking in every little beautiful detail of the great outdoors.
I’m told I started walking at just eight months old – I never sat still. Now I’m being forced to do the thing that least comes naturally to me.
This pain brings with it a loneliness and it turns me into someone I don’t recognise. And so, instead, I distract myself – when the pain is more manageable, I do some watercolour painting with the patio doors wide open and the fresh air rushing through, or I meet friends for lunch, or I plan. I love planning – planning for a future where I won’t be in pain, planning for our wedding, planning to walk down that aisle pain-free and fall into bed that night having danced until the small hours without pain creeping in. Is that so much to ask?
I tried my wedding dress on for the first time last week and I don’t have words for how that felt. I’d nearly cancelled the fitting after the relapse but I’m so glad now that I didn’t – it was exactly what I needed and it felt like a little triumph against MS and everything it has thrown at me in the last month.
If I have to take every cocktail of painkillers going to get me through that one day then I will. But who knows – maybe things will be better by then. Until there’s evidence to say otherwise, I’m going to look forward to that wedding like any other bride.
I suppose I never really believed that MS could affect your mobility like this and in the last week my recovery seems to have plateaued and I’m so scared by that. But I’m done wallowing in the pain – I’m done thinking about it, focusing on it and challenging it. I’m done with fearing MS – that fear will only bring with it its own destruction and I will not give MS that helping hand – I am the one who controls that.
So I figure that if it’s here to stay I might as well pop another cocktail of mildly-effective painkillers and get busy living in spite of it. It’s time to stop looking back at what was because this, right here, right now, could be a whole lot worse and I am by no means going to go down without the biggest fight of my life. What bigger cause is there to fight for?