Calling MS to heel

Author Marlo Donato Parmelee tells of her battle with multiple sclerosis after the birth of her second child

Recently, I was in the fitting room with a client at the luxury shop I manage. I showed her our latest collection and explained what shoes go with what outfit. She stopped me mid-sentence to tell me: “I cannot wear heels like you can.”

I looked down at my 105mm Christian Dior platforms and smiled inside. Just last year, I had been brought to my knees…

In November 2012, I gave birth to my second child Chiara. Like most mothers, I spent the next few weeks, elated by the beauty of this new bundle, and yet exhausted, and surprised that she could be hungry so often. But I also spent those weeks in fear of the inevitable – fear of the hour, the day, the week – when reality would come crashing down and remind me that I am not like most mothers. I have highly active relapsing-remitting multiple sclerosis.

My pregnancy with Chiara was much like my first pregnancy the previous year – a holiday from MS. I felt energised, clear minded and healthy. However, in the few weeks leading up to her birth, I could feel my healthiness sort of, well, wearing off. My eyesight became slightly blurry and my left wrist began shaking ever so slightly. These were among the symptoms MS had shown me in the ten years it has been in my life, so I was not surprised by them; just concerned. I was nervous about how much time I had left to blissfully pretend I was “normal”.

And then it came – the postpartum relapse I feared.

Four weeks after giving birth, I woke up with tingling down my right leg. In two days it progressed to the point where the leg gave out underneath me and I fell with Chiara in my arms.

My vision became blurrier, coupled with constant pain in my eyes, and my wrist shook more. I fumbled frustratingly with the snaps on Chiara’s babygrows. Dizziness and fatigue, both common with MS, also made their reappearance.

Sometimes when I use the word “fatigue”, people ask is it just like being very tired? I tell them it would be like flying from the UK to Australia in economy, getting there and having to drive three hours to your final destination, where you are then given a maths exam.

No! I thought. Give me more time! I wanted more time to be able to breast-feed.

We can allow misery into our hearts or we can let in life and love

Before I had children, I was more the “breasts belong in a designer bra purchased with the money I make from my career” kind of woman. But I came to realise that breast-feeding was not only healthy for my child, but it was cosy; like sipping hot chocolate under a duvet times a thousand.

Four weeks did not feel like enough time for me to enjoy this bond with Chiara. I felt like MS was once again, trying to rob me of something that was rightfully mine.

So I did what many people do when they don’t want to face something; I pretended it wasn’t happening.

My husband Tim was both amazed and appalled by my stubbornness. As limping turned to crawling, he tried to talk sense into me. He was alleviating me lifting the children when he was home and when he caught me on my knees transporting Chiara, he looked horrified. I saw nothing wrong with it. It was a matter of logistics. My baby needed to go from point A to point B. I lifted her up and hobbled on my knees to where we needed to go. I could not stand up at that point and I knew that, if I fell, she would be safer this way.

Tim suggested that I call my MS nurse – my lifeline.

“You need to get well,” Tim said. “You have already given Chiara the most important milk. Her immune system will be fine. Now you need to decide do you want to be a mother who has energy for her children? Or a mother who has no energy and breast fed.”

I took out my walking stick that was collecting dust after recovery from a previous relapse. I told him that I just needed a little more time before I called anyone for help.

But then came the pain.

Two weeks later, an excruciating pain jolted from my lower back down to my foot. I didn’t take painkillers because of the breast-feeding. I joked with Tim that MS was now “quite literally a pain in the bum”. But it was no joking matter. I was in the kind of agony that makes you react badly to your spouse asking simple questions, like what we should do for dinner.

So I made the dreaded phone call and the following day I was at the relapse clinic. My neurologist confirmed that this relapse was more severe than the mild one I had with my first child. I felt heart-broken.

I whispered to Chiara the last time I breast fed her, the guilt overwhelming me, my tears splashing on her little body:  “I have to stop breast-feeding you, poppet. Mummy had planned to feed you for months, just like your sister. But mummy’s body is not very well at the moment and I have to be strong for you.”

It took an initial course of steroids and then months of neuropathic pain medication, physiotherapy, and ultimately, my disease-modifying drug, to bring me back to walking properly – and then to heels.

I wanted to have children. I consciously made the decision that I would endure any pain; any postpartum relapse that MS had in store for me, in order to live a full life. I believe we have two basic choices in life: we can allow misery into our hearts or we can let in life and love.

When I look at my happy daughters and hear them giggle, I know it was worth it. I am living my life to the fullest and I am content.

Awkward Bitch: My Life with MS by Marlo Donato Parmelee is available at amazon.co.uk