It’s okay to feel lost

 

The words stick in my throat. I can’t find them. I don’t know how to let them escape. And yet if I don’t, they’ll drown me.

Just because we don’t speak something, just because we lock it away and keep hoping, it doesn’t make the fear any less real, particularly when that fear is so locked up in your reality. We have to confront it, as impossible as opening up those flood gates may seem, as difficult as it may be – if we don’t, how can we move forward?

I write this from bed, having been floored yet again by the flu – which is awful at the best of times buy try throwing in the fact MS hates a high temperature.

I lift a cup of tea to my mouth, cursing the beautiful giant mug I’d treated myself to last week as my hand shudders under its weight. Who needs to buy dumbbells when you have MS!

Life is just so fragile, can you feel it? It’s beautiful, ugly, wonderful, nasty, exhilarating, agonising and yet oh so precious.

It’s unfair, it’s unreasonable and it can beat you down. Then in one swift motion it’s the most beautiful thing – and I live for those moments.

Yet I can’t help but wonder why it seems like those moments are so fleeting. I’ve never lived through a year quite like the last, where you constantly have to sift through the darkness to clutch at the flickers of light.

I’ve learned there’s no such thing as fairness and there’s no such thing as having had your fair share of bad luck – look around the world and you’ll see that. I’ve spent the last year living for our run of bad luck to end, but it just keeps coming.

New year, new hope

It was a beautiful, crisp January morning – one of those where the sun shines like it’s the middle of summer. I’d had my hair done and off we went ring shopping, hand in hand, planning to clutch warm hot chocolates and sit huddled in Trinity, just like on one of our first dates eight years ago.

Except a lurking chest infection slowly rendered my right leg useless as we left the ring shop, meaning my evening was instead spent crying on the sofa in pain.

I was just starting to recover from that when we got the news that my beautiful, kind, amazing uncle had been found dead. I don’t even have the words, as anyone who’s lost a loved one or watched family grieve knows only too well.

The scales just keeps tipping in one direction and we stare at the other side, staring and hoping because what else is there? But how do you stay upright when your world feels like it’s crashing in the opposite direction?

I’ve been attempting to claw back my mobility. But it’s been a delicate operation. I relish in the good days and I feel hopefully again. But then MS drops me like a tonne of bricks and I find myself lying on the couch with a hot water bottle pressed to my already burnt leg – the only thing that goes some small way to easing the pain. The pain that just wears me down some weeks.

“Pain is inevitable suffering is not” I whisper to myself as I paint on my best smile. But the fear is there – wondering how I shape my future despite it all. Pressing reset on the things that make us happy (the long weekend walks in particular), and trying to carve out a new path. But then I’ll suddenly have a couple of weeks where I can almost taste recovery only for it to crumble away in front of me as I reach out to touch it – then it’s back to the drawing board and the grieving all over again. I’m starting to wish I’d been really lazy prior to MS and maybe then I wouldn’t feel this gaping hole in my life!

I struggle to find the words because the anger just rushes in in waves, crashing into my life like an angry ocean and sweeping me along with it. How do you describe that to someone? How difficult it is. How hard it is to grieve and accept where you are now when there are days you get flickers of how you once were. How hard it is to keep up with the constant teasing – it’s like hope is constantly being waved in front of us on a delicate piece of string. Yet we never give up hope, even when we can’t see it, it’s there – it’s what silently pushes us all through the tough times.

But the days the pain becomes too much, those days are hard. I struggle to keep it together, to smile and to imagine a life any further than outside the pain that I feel stops me living. It’s easier in the summer – to rest in the garden and feel the sun on your face – but in the winter it’s just you, your pain and the four walls and it feels like such a waste of what is precious time. You have to sacrifice days just so you can gain other ones. People talk about how it’s the little things when you’re feeling down but what happens when the only thing your body is physically capable of doing is lying on a couch with a hot water bottle, when you can’t focus on the TV, you can’t read because the words swim in front of you and you can’t sleep because the pain gnaws away. What do you do then to cope? I struggle because I want to seize life but on those days you just have to sit there and hope that doing so will give you tomorrow.

I don’t think accepting you have something like MS is ever going to happen overnight – and each MS relapse will bring with it a whole new grieving process. But I guess I’m starting to understand I have MS instead. I’m understanding that I have a disability. And that’s where the anger comes in.

I’m realising the future we’d imagined for ourselves has changed and I’m angry about that.

I’m accepting I have a disability and that makes me angry.

I’m angry that I live in pain most days.

I’m angry that I have to struggle to plan a wedding in a world where brides and grooms with disabilities are not spoken of.

I’m angry that I have to navigate a world where people with disabilities are invisible, where it feels like society puts us on the bottom tier, where people think it’s okay to park in disabled spaces without a permit and they think it’s okay to stare at me when I’m using the wheelchair. I’m angry that they just have no idea how hard life can be for someone with a disability and why they feel they must make it harder.

I’m still a person – behind the MS I’m still me. Despite it all I still cling to the same hopes and aspirations, I just have to navigate a far more difficult and rocky road to achieve them. And navigating that road is what makes me stronger.

As the song goes: “It’s alright not to feel okay.”

It’s okay to cry and sob until your heart feels like it’s breaking and you’ve cried enough tears to fill the ocean – there’s moments I’ve curled up into a tiny ball and thought I couldn’t take the pain any longer and the sadness clings to everything. But just as that rushes in, so too does the happiness – the things and the people who make you smile, the reasons you face it all.

The challenges we face every day make us stronger and more resilient than we could ever have imagined. Our bodies are not broken – they are just different.

There have been some really difficult days but somehow you get through them. And when you emerge the other side, the world looks a little bit different to how you left it – it’s like you’re seeing for the first time and the world is far more precious than you could ever have imagined.

“It’s no bad thing to be lost in a fog or at sea. When land comes into view again you will appreciate it with a keenest that is denied to those who no nothing but the safety of the shore.”  – BBC’s Call the Midwife