One breath out.
One breath in.
Heart pounding, mind racing.
Concentrate Rosie. Concentrate. This will pass. You are not your pain despite how all-consuming it can become. You are still Rosie.
Yes, but who is she anymore?
She is not what she dreams of.
And this ache that I live with, it’s never going to go away is it? I will never not be grieving for what’s been lost, I just have to learn how to live with that loss.
But with each painful, broken step, that loss is a harder pill to swallow. I’m struggling, struggling more than I’ve ever struggled and I can’t run from that anymore. I feel broken, mentally and physically at times. But in the next breath I’m grateful, grateful for the amazing life I have with my husband and our little dog Trixie.
This disease taunts me and it makes me watch on, helplessly, as it rips away more of who I am.
In the last few months I was making great progress with a neurophysio I’ve started seeing.
… then it all came crashing down and I’m staring at the broken pieces of myself and I don’t know how to put them back together. Where do I even begin?
My mobility has crashed to an all-time low and my pain has soared so as not to be left out of the party, the assault on my body. The weakness in my right arm has become worse as well and I don’t have an answer about why this is happening to me.
Then it all came crashing down and I’m staring at the broken pieces of myself and I don’t know how to put them back together
Ever since my diagnosis there’s been this undercurrent of progression, of my muscles slowly declining and new symptoms slowly appearing. But they’ve always been dismissed.
“Your MRIs are clear, they show no progression. The symptoms must be from one of the old lesions.” – It’s the same line I hear every single time.
But I wish my MRIs would show new lesions because I need something to explain this progression. I need to be believed and to be heard! I can’t sit around and watch myself progress because I don’t fit a doctor’s textbook idea of MS. I know my body, I know it better than anyone and I know my MS better than anyone. All I want is to be heard. I’m sick of doctors dismissing symptoms. I even had a doctor tell me I had no weakness in my right arm at a recent check-up! Two days later my neurophysio assessed the strength in my arm and within seconds she confirmed that there is weakness and spasticity there and that it is clearly evident. How and why would a trained neurologist dismiss that?
At times I feel like slinking off into the background and allowing myself to become consumed by this disease, to give up the fight against it so that it can have its way. Maybe then in time the doctors will see that I was right all along about the activity of my MS.
But in 2015 at the height of my training for the half marathon, I believed a doctor when he dismissed the weakness I’d noticed getting worse in my legs, the niggling feeling at the back of my mind that something wasn’t right, that my MRIs were stable but I was gaining more symptoms. Not trusting myself then cost me my mobility and has left me with pain for the rest of my life because two months after that appointment I had one of my biggest relapses, the first spinal lesion that was willing to say hello on an MRI.
Well, I’m not willing to take that chance again. This is my body and I know something is not right. I’ve just turned 29 and I can barely leave the house. I can’t even manage walking around the shop to pick up a small basket of shopping!
Time for answers
So I went along to my next neurology check-up determined for answers, more determined than ever about the need to change medication too.
And the answer about my symptoms finally came.
“You have a strong underlying progressive element to your MS.”
I was being acknowledged at last but it was so bittersweet. I did not want to hear the word progressive but at the same time I’ve known for so so long that something isn’t right with the way my MS has been behaving.
“Your current medication is managing your relapses and preventing new lesions forming but it’s not treating the progressive side of the disease.
“No treatments on the Irish market will work for you bar one treatment the Government is refusing to reimburse – Ocrevus. But we’re going to try and get you on it.”
So now I’m sitting and waiting for a phone call to head into hospital for a short stay so they can do the workup and get me seen by the rehab team.
“We’re going to get you walking better again,” said my consultant.
God I want to believe those words so badly!
The truth is I’m frightened, really, really frightened and I can’t help but ask why me? I feel like the only young person under the age of 30 who’s had to deal with such an array of cruel MS symptoms in such a short space of time. I know that’s most certainly not true. But on my lowest days that’s how it feels!
But every so often the cloud of pain lifts ever so slightly, I get respite and I gain perspective, but most of all I gain hope. In the last week I have left the house a handful of times, but on two of those days I managed a 10-minute cycle. I saved all my energy and I poured it into those beautiful 10 minutes. I was cycling in first gear, wobbling across the park, it was tough, but I was immensely proud of myself.
Being proud of myself is not something I’d ever have said pre-MS. I was always highly critical, the ultimate perfectionist in everything. But MS has dealt me a raw deal in such a short space of time and I am proud of how I’ve coped, how despite how tough it’s been I’ve still not forgotten how to laugh, how to smile, how to love. I cherish every little thing about this crazy world and our crazy existence. I’m proud of who I am and I like the person I’ve become. She is strong, she is brave, she is kind, and through MS she has met some amazing people and made friends for life, all people who have enriched my life through our shared experience with this disease. And it’s those people who remind me I’m not alone.
Despite my drastic drop in mobility, for the first time in a long time I feel hopeful. Hopeful because at last I’ve been listened to. It shouldn’t have taken this long. Out health system is overstretched and neurology is woefully underfunded. To the system, I am just a number, an expense on a balance sheet. But behind that we are all people, and the cost to the state of not getting us on medication like Ocrevus – the only medication in the world treating more progressive forms of MS – will be far greater in the long run.
So now I’m sat here once again hoping and waiting. Waiting to start my new chapter, whatever that may bring.