I’m finally sat back here. Staring at the keyboard. Words and feelings storming through my brain.
They’re too fast to catch, to hold on to and to challenge
It feels like they rip through me. But there’s so many of them.
I’m tired. Too tired for all of this.
Somedays I can’t cope with the thoughts. The others, I distract myself. The truth is, I’m afraid of what lies there. Who will I be when I finally confront them? What will be left of Rosie?
I’m not ready to let her go, to accept that things are different now.
Drip. Drop. Drip. Drop…
How long have I been staring at that dripping tap? Stuck in a trance as my thoughts wander to times past and my tired body glues me to the kitchen chair. When did it end up that my daily companions had become a dripping tap and the distant hum of the TV. Oh, and pain!
The loneliness is suffocating. Everywhere I turn I see my ghost. She haunts me – a constant reminder of what I am not.
But what am I?
I feel like a shell. A prisoner.
On the good days I dream and the old Rosie pushes forward, willing me to keep going. But it no longer matters what Rosie wants. Dreams just distract me from my reality, from what is really possible. What Rosie wants never outweighs what my body wants. My body always wins.
The prison doors are always ready to slam shut just as you’re ready to escape.
Is this my future? Is this really what MS means?
I try to fight it. God knows I’ve fought hard and stayed positive for long enough. Time after time I’ve bounced back, but now… now I’m just too tired. I’m too tired to even properly surrender. I’m too tired of dusting myself off only to be knocked down again before I’ve even caught my breath from last time.
Is there no break from this? Does it ever get easier?
What really is remission?
They talk about remission – is remission my pain dropping to a 5 and my being able to walk with heavy legs but without a stick for a while? For my MS to become temporarily invisible to the outside world despite the pain it sends flooding through my system?
Is this the same remission that left me breathless and stranded in the cinema last week when my body suddenly dropped and my legs no longer wanted to carry me. That in the space of two hours I can go from walking to nothing. That this and the pain that gnaws away at me in varying waves of intensity have become the only constants in my life. Walk today, wheelchair tomorrow!
I don’t know how to save myself from falling. The enormity of it all drags me down, day after day. And unless you’ve sunk there, it’s impossible to explain how this feels. A sadness completely wrapped up in your broken body – the happiness of your day dictated by what your body can do.
Does anyone remember that “It’s the little things” advert, the one about depression. That plays in my mind when the sadness grips me because what happens when your body doesn’t allow those little things? When every hobby and thing you love is pushed out of reach at that exact moment you need it most. When your body has become so fatigued that you can only lie on the couch breathless, staring at mind-numbing TV because it’s that or broken, fitful sleep.
I have dreams that slip further from my grasp everyday, further from what this broken body will permit. And I start to wonder what’s the point of me. Is it to slowly become imprisoned by my own body? Because I know Rosie is still in there. I’ve not given up and I fight for her every single second of every day. But I worry she will end up locked away for good.
I’m tired of strangers and people who don’t understand telling me to stay positive when they’ve simply caught me on a bad day. They have no idea the depths to which my positivity really runs. It took two years of relapses and finally realising my mobility issues are here to stay before that positive armour cracked.
But in hindsight I now see it needed to crack. I needed to face what lay in front of me and to grieve and accept that, and that’s what I did and I am still doing.
Society gears us up to see positive thinking as this happy-go-lucky person who’s not really fazed by anything because they can always look on the bright side. But how would that little person manage if you suddenly turned their world upside down and left them in constant pain? They’d be upset, right? And rightly so. Being positive doesn’t mean you can’t cry about the bad stuff or get angry about the way life attacks you sometimes.
I see now that, even though I cry more, I’m more positive than I’ve been in a very long time.
Even on the mornings the pain takes my breath away, I get up and I get dressed. I carefully do my makeup – in fact I’ve grown to love that this last year. I’m not just putting my face on for the outside world, I’m putting it on for me, so that when I’m having a really tough day, I look in the mirror and I still see Rosie and I’m reminded that I am not the sum total of my pain and I am not my MS. I am still me. I’m a much edited version of who I once thought I was, but I’m still there.
Morning after morning, I place on that armour and go to battle. You see, don’t let anyone ever tell you you’re not positive. How many of those people would still paint on a smile and go to work and pretend everything’s okay despite the pain increasing bit by bit as the clock whirs forwards? How many of those people would still have let their wedding go ahead knowing that they’d be in pain for a good part of the day? Knowing that they’d have to use a wheelchair on their honeymoon?
I might cry and I might have days where I utterly break down and wonder how I’ll travel the road ahead, but that’s okay.
My positivity runs to depths I never thought possible and on the days it doesn’t, I do what’s called thought challenging – challenging each negative thought that enters your head and just living in the moment. Because often when you live with pain, that’s all you can do some days.
What I view as my being positive is getting up in spite of the pain every morning, it’s my walking the dog and smiling as the fresh air fills my lungs and tickles my skin despite the pain that’s already crept in. It’s in my every waking moment and it’s the thing that keeps me going each and every day. It’s the thing that still drives me even on the days the pain leaves me curled in a ball, begging for a respite.
It’s my entire way of living because, yes, living with MS and chronic pain is so hard and almost impossible at times, but strip back the MS and I’m happier than I’ve ever been.
On the bad days I’m so lucky to have Niall there holding my hand. Walking down the aisle to him was the best moment of my life. You see, my world is still full of so many wonderful people and so many wonderful things and they make it all worthwhile. And while I’m sad and I’m still grieving for the Rosie that’s been lost, I’m so damn proud of the one that’s here and the fighting spirit that still burns bright even on the days I can’t see through the clouds.
It’s easy to live a positive life when the course runs smooth but life, as it is for most at some point, is always full of the ups and downs of a storm and it’s only through travelling that broken path that you discover exactly who you are. I am not pain, I am not my MS – I am and I will always be Rosie. And I’m starting to see that rather than having lost her, I’m really only just meeting her for the first time!
I wrote this blog almost two months ago and never got around to sharing it. Pain is sadly still a huge part of my life but I’m happy to report that I’ve just had the most stable MS month in 18 months. And by that I mean no sudden and drastic drops in mobility like in the cinema that night. So long may that continue