The silence wraps itself around me a hundred times over. It’s suffocating. I lie still. So so still – not wanting to awaken the monster. My patience is wearing thin. I’m so tired of this. Tired of fighting it. Tired of living with it. Tired of always having to think about it.
The pain was so bad that I cried myself to sleep last night. Sometimes it feels like it will never end. I can’t understand how much destruction MS has caused in the last six months and I worry there’s no coming back from where I am now.
Last Saturday marked exactly a year since I ran the half marathon, since I ran a whole 21.1 proud kilometers. As I sat watching Niall get his gear together on Friday night, all ready to take on the half marathon again, me all ready to proudly cheer him on, my body decided to go one step further and one step crueler – I went to move off the sofa only to discover my right leg had stopped working. Everything came crashing down around me in that instant. I was trying not to look back, trying not to think that this time last year it was my running gear at the end of the bed and not a walking stick. Now, here I am feeling trapped – trapped in my own home of all places, struggling to even climb the stairs.
I completely broke down when Niall insisted on carrying me up to bed. “I guess it’s practice for carrying me over the threshold next year,” I sobbed. But I can barely even think that far ahead anymore. There’s been no letup with this disease in the last six months – I fight against it, I adapt, I focus on the positives and still it continues to hit destruct on everything in my world.
I look at many other 26-year-olds and friends getting on with their lives and I can’t help but compare myself – yet I have to start to accept that our realities are very different things now. I look at pictures of myself on nights out and trips away and I just think “life before MS”.
I just want to feel like me again, I told Niall, but I don’t even know who she is anymore and I’m feeling so utterly lost as I struggle to find her. I came to a difficult realisation this week and that’s that I now need a wheelchair if I’m to leave the house. Without it I’m trapped at home and what good can come of that? But I don’t even know where to start – where do you even buy a wheelchair from? (Any suggestions welcome on that one)
I’d always told my family and friends not to worry, that the chances are I’d never need one or at least not for a long time. Yet here we are, 18 months in, and that time has come already. Will it be forever? Who knows. I’ve learned you can never second-guess this disease.
The guilt tears me up though – I see the pain and the sadness on the faces of the people I love and I feel guilty. As irrational as it is, I feel guilty because I feel like it’s my broken body that’s causing them that pain. My rational side knows that’s not true, that it’s because they love me that they struggle to watch me live in pain.
My choice now is to sit at home trying to manage the pain by myself, leaving message after message with overworked and under-resourced neurology departments, or I listen to my GP and I go and sit in A&E for hours – the only way it seems to gain access to the doctors you need. But I’m waiting it out this time – I have a general check-up in two weeks and I figure I’d sooner deal with this at home in the arms of the people I love.
Right now the thing I want to do most in the world is to simply sit in the local park with Niall, to maybe grab a coffee and to just sit there. I feel like being outdoors is the one place where I’m able to slow down the rush of my mind, where I’m able to bring a smile to my face and dare to dream about the future and believe that this is just a bump in the road and that it’ll all be okay.
We don’t always realise how precious life is, how easily our bodies can be broken. We need to seize what we can in any given moment – don’t put life on hold. If you can do something, then do it. If you’ve ever dreamed it, then do it. None of us know what path MS will take us on. The first 12 months of my diagnosis were tough, but lacing up my runners the day of my diagnosis was one of the single best decisions I have ever made. I may have been running from the diagnosis at first but then I was just running – running towards something my 10-year-old self would never have believed possible. I could have sat back and thought: “No, next year. I’ll do it next year.” I couldn’t possibly have imagined that next year a km would be harder to accomplish than 21 of them.
But that is life. There is no next year – there is no tomorrow. There’s only here and now and the decisions you make in those moments. I may never run again but no one can ever take that half marathon medal away from me. I earned every last bit of it and it will always hang proudly in our house – a reminder not to give up whatever the odds. So while it feels like my body continues to fail me right now and I’m in pain as I write this, I continue to hope, I continue to reset dreams and I continue fighting. I have to believe that this is just a bump in the road and that right around the next corner things will be okay. I will be okay.