Tick. Tock. Tick. Tock… I lie and listen to the sound of time passing. Children laughing outside. Cars passing. Niall humming as he washes the dishes. My mind is racing, ready for action. But my body won’t listen. My eyes won’t stay open.
I can no longer remember what life was like before this. The person that I was seems like a shadow. A person from another life.
I ran 14km yesterday, the furthest I’ve ran in my life and the best run I’ve had in a long time. The sort where your legs feel light and you glide along. The extra km is always tough but the old ones become so familiar. With each week I clock up that bit more and I get that bit closer to my goal. It makes me feel on top of the world and so completely and utterly alive. It’s beautiful.
But today I’m lying in bed, wondering how I even managed it up the stairs. I don’t even have the energy to read a book, the words just swim in front of my tired eyes.
I hate the tiredness that comes with MS. I sometimes catch myself longing for life before this disease, but I struggle to even remember what that was like? I push myself to do the things I used to. Squeeze in a run after work, tidy up, wash the dishes, get the food shopping in, go out for a catch-up with friends. Keep going going going…
Sometimes it lets me think that I’ve won. I can have an amazing week where I feel like I’ve come out the other side.
But then it’s there again.
In truth, I can see it coming. I can always see it coming. It creeps up on me like a fog. It’s like someone is slowly gluing my eyes together and the effort of moving them or opening them is just too much. Yet this is my life now. This is as good as my MS will ever be and I have to accept that. It’s only a few months since my diagnosis and I’m still learning how to navigate this new path. With each crash I learn a little bit more about what my body is capable of and when I need to take a step back and just rest. I guess that’s a lesson for us all though. How many of us really know when enough is enough?
I never used to give myself an inch. I never stopped. If I wasn’t working, I was exercising or worrying or filling every second of my day with something. My body had enough and the difference now is that I can’t ignore it. I have to listen to it and work with it. That’s not necessarily a bad thing but it’s still hard not to feel angry sometimes, especially when you feel you have no control over your own body and you start to wonder what’s in store – what will this disease throw at me next?
But whatever it is, I know this much: I’ll keep running for as long as I can comfortably put one foot in front of the other. If that means having to spend a few hours in bed after a long run then so be it. It’s worth it for every single kilometre and minute of feeling so completely alive.