Lights twinkling, Christmas songs echoing in the background, people running past in a flurry – rushing, racing. Life goes on and on.
Our tree stands proud in the corner. Its lights silently twinkling, casting a warming glow over an otherwise dull December.
It’s such a welcome sight. It means I can finally spend time with family I’ve missed all year and it means we can finally wish 2016 good riddance. I will never be as happy to welcome in a new year as I will be this year.
I kept my head above water for most of it. Despite constant illness after illness since February, despite watching other family members battle ill health too and watching them lose loved ones, we kept going through it all.
But there’s only so much paddling you can do beneath the surface before something has to give.
It’s hard as the year draws to a close not to reflect on what was. But that’s harder than ever this year and it’s difficult not to feel sad. I’ve spent most of the last 12 months cooped up in the house, wondering where and when it will all end.
I kept going and truthfully I was okay for a lot of it. But relapse number two was a whole game changer. It left me questioning everything.
At the time of diagnosis I didn’t feel I needed to grieve. I see now that I may not have understood the enormity of the diagnosis, and that subconsciously I fought against it, constantly pushing my body to the edge of its new limits.
But I coped. People see denial as bad – I’ve had so many people tell me I was in denial during that first year. But what’s wrong with a healthy bit of denial?
What was the alternative? Should I have crumbled and cried about relapses that may never happen, about wheelchairs I may never need? Should I have wasted those 12 months wrapped in grief only for this disease to strike again, only to start grieving all over again because this time I was grieving for what had really been lost rather than a fear of what could be?
That little bit of denial saw me run a half marathon, knowing how precious and how much of a privilege each beautiful step was; it saw us finally make it to Iceland; it saw me live from moment to moment, cherishing each precious one because deep down I knew it could be snatched away and I refused to grieve or cry about anything that wasn’t my reality. And I don’t regret a single thing about that first year.
The game changer
I knew I was relapsing this summer. Everything had started to slip that February – I’d had three stomach bugs, I’d had shingles, I’d fractured my lower back and throughout it all my legs were progressively getting weaker. I remember Niall suggesting that I might manage better if I started walking my 5km loop instead of running it, so I went from running it, to walking it, and that 5km quickly slipped to 3km and then to 2km… and I think we know the rest!
I was pretty accepting of the first relapse of 2016 as I’d felt unwell for a while. I was pretty naive in a way – my double vision got better so of course this would too! I never doubted it and because of that I went back to pushing my body to the edge again.
Relapse number two came out of the blue and it was the game changer. I will never forget not being able to climb the stairs and crying in pain for hours as my leg continued to go into spasm. Of everything since my diagnosis, that was my lowest point. Pain will always succeed in turning you into someone you don’t recognise.
As recovery has started, the dreaded fear I’d kept at bay has finally crept back in.
I’m reminded of that quote from George Orwell’s Down and Out in Paris and London:
“It is a feeling of relief, almost of pleasure, at knowing yourself at last genuinely down and out. You have talked so often of going to the dogs – and well, here are the dogs, and you have reached them, and you can stand it. It takes off a lot of anxiety.”
In the early weeks of that second relapse, it never bothered me that I was using a stick or a wheelchair – I had no choice.
But then I started to get better. I started climbing the stairs with my stick and then without it. I started walking out of the house instead of needing to be wheeled out. I went from using my wheelchair when we went for a food shop to managing to lean on the trolley. I went from that causing me a lot of pain to just a little. And I started to hope again and with that hope finally came the grief and the fear.
A good MS day can often turn into a bad one in minutes as my walking drops from normal to a painful shuffle. It feels like MS is constantly teasing me; here’s what you used to have – oh wait, we’re going to take that away again.
I constantly worry about what level of recovery I will reach or if I’ll just relapse again and watch it all slide away from me. On more occasions that I care to admit in the last few months, I’ve found myself bursting into tears – collapsing under the enormity of a year that has just chucked obstacle after obstacle at us.
I accept now that I’m grieving and it’s a process I have to work through. I’m grieving for a Rosie I may never see again. I’m grieving for all the things I can no longer do as MS continues to tease me. For the last few months I’ve denied myself that grief. I guess it was a subconscious decision – a way for my mind to cope with the physical struggles that lay in front of it! However, the problem with grieve, in any form, is that you finally have to face it – the more you push it away, the harder it pushes back and the more destruction it will cause.
I have to believe things will get better and I know I will find a way through this. My MRI a couple of weeks ago revealed that my MS is now stable and they’ve changed about some of my meds, improving the spasticity and pain in my legs. To not be in pain every single day is one of the best presents I could have hoped for this Christmas. And as I take a step back and silence the fear for a while, I can see that I am improving.
The 31 December brings with it a welcome end and that’s as important as new beginnings. I feel like it will allow me to draw a line under all the upset of 2016 and with that I can face what’s to come
So here’s to 2017, to weddings, to honeymoons, to happiness, to dreams, to hopes and, above all else, here’s to great health.