“15 days to go until you say I do – I bet you’re so excited!”
Wedding to-do lists. Wedding magazines. Wedding forums .
And then there’s me. Locked out of the wedding world. With a month to go I found myself on the floor, crying with pain that had constantly intensified over two weeks. Taking me to my lowest and darkest point since diagnosis.
To wake up day after day and to not want to open your eyes and face the day because you realise the pain is still there. On my lowest day, when fighting the pain became too much, I crumbled into a ball on the floor and I just wanted to die. I wanted to die so so badly because I couldn’t bare to live another day with pain of this intensity. I found myself wishing I could go back a month – at least the pain I had then allowed me to be functional.
To want life so badly but to no longer feel like you can endure the pain to hold on to it. 27 years old and two years into this disease. Where will I be when I’m 30? I begged the universe to give me – to give us – a few more precious years where this disease isn’t as aggressive, to do the things we love.
The pain this time was mostly in the front of my neck. A numb-like, gnawing and sharp sensation. The pain would wrap around my neck and shoot up the left-hand side of my face. At times, all I could do was lie flat, rubbing Deep Heat everywhere and pressing a hot water bottle to my neck – always hoping that tomorrow it would be better. I would wake up every morning feeling like someone had stabbed me in the back of the head. Simply put, my whole head felt too heavy for my neck to support and the pain when it tried to was crippling. It would eventually spread down my chest and wrap around to my back. It seems doctor hate it when pain jumps about like that!
As I lay there on the floor wanting to die, something suddenly just clicked in me. I don’t know what. My fighting spirit crept in. I started reading about other people LIVING with chronic pain. It’s not a life anyone would choose but it’s still a life – a life where you can still be happy. What had I to lose by trying? I had to try. I wanted life so badly. I wanted to get married to Niall more than anything else in this world and our life together was worth fighting for.
So I brushed myself off, put on my best smile and started setting myself daily challenges; Could I manage a trip to the coffee shop? A lunch date with the girls? How much would my pain allow? I wanted to test what level of pain I could withstand so I would know what to realistically expect of myself on our wedding day
I put on my best smile and I somehow look happier and healthier than I’ve looked in years. It feels so much easier to hide behind that smile than it is to curl up in a ball and cry. I have to fight for me. I have to take back control of whatever I can, whenever I can.
Fighting the system
Calling the MS nurse in a state a few days prior to this, she told me “pain’s not a relapse”.
Okay – I’ll just curl up in a ball shall I? Fancy trading places for a day? No, I didn’t think so.
I somehow managed to grab an appointment for the following day. But thanks to two cancelled MRIs due to a ‘broken machine’, we had no way of knowing for sure if it was a relapse.
So I was sent on my way with a mega 900mg dose of Lyrica (the pharmacist was so shocked he rang the hospital to check if it was a mistake) and a promise that my reschduled MRI would be brought forward. That never happened!! I’m always amazed at how dismissive they are of pain despite my history of it being attached to relapses. They want a black and white MS case and I’m not that.
There have been a lot of fights with the system but I just don’t have the energy to go into it all now. Truthfully, I feel abandoned and at a loss. MS doctors scratch their head and tell me my lesion load is small but the level of disability I’ve accumulated in two years says otherwise. I get told my right leg that’s remained weak since the relapse has good underlying strength. What does that even mean? If it’s underlying do you think it might pop back and say hello – I mean it’s been 10 months and it’s as recovered now as it was at month one.
Pain is king
People talk about MS and they stigmatise the wheelchair, as if needing to use one is the worst possible thing MS can throw at you. For me, pain beats it hands down every single time. What I would give to trade pain with so many of the other MS symptoms.
I currently can’t work because of all this and I’m sick to my stomach when I allow myself to think ahead past the honeymoon and what will happen if I’m still not well enough. They say money doesn’t buy happiness but money would mean that if I couldn’t work, we could still live in Dublin, close to the supports I need, close for hospital appointments and the classes MS Ireland offers. It would mean we could keep paying for extensive amounts of physio to help with the pain. Counselling to help cope with the ups and downs of MS…. the list goes on and on when you live with a chronic illness.
As hard as it’s been of late, I’ve had to stop my mind spiralling into the cycle of what ifs. As I slipped on my wedding dress last week, it was the first time in a long time that I was fully present. I remembered what it was to feel excitement build up inside. Now, as I sit here writing this, I’m trying so hard to recall that feeling as I battle with the pain – the monster that always wants more.
Love is …
As we stand up there and say “I do” in two weeks, “In sickness and in health”, I know that we are facing a tough future. But MS has challenged us and changed us in ways that have only made our relationship stronger. And that’s how we win against it. We win against it because in my darkest days Niall in there, holding me in his arms, wiping away my tears, bringing a smile to my face and making fighting this monster worth it for every beautiful and cherished second we get to spend together. MS can’t touch that.