Helen Fowler: ‘It turns out I need to accept my MS’

Writer Helen Fowler.
Writer Helen Fowler.
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JOURNALIST and MS campaigner Helen Fowler on getting through the bad days, trying to Google away her illness and edging towards acceptance of her MS.

Elder daughter and I are queueing up in the café of M&S, where the line is moving slowly. The tray bearing our iced buns feels much heavier than a moment ago. I put it down; it lands with more of a thump than intended, clattering down next to some shortbread. Surrendering my burden helps (a bit), but I still feel dizzy with the effort of standing.

Oh, God. Here we go again. I tip forwards and clutch at the edge of the counter.

An elderly gentleman turns round in concern. Members of staff start appearing by my side. I sink to the floor. It’s good to have a solid surface to sit on.

Somebody else in the queue crouches down beside me. I had briefly thought he looked alarming, as we were stood in the queue together; it turns out he’s not scary at all. He helps me to my feet and together we totter off to a table, me leaning on his arm.

“I’m sorry,” I say to my daughter. “I wasn’t expecting this to happen.”

“It’s all right, Mummy, I am used to it.” My heart feels like a little bit of it has just died or switched itself off as I hear her words. I am used to it. This is not something I ever wanted for her.

But I too am getting used to this stuff. A year ago my reaction to something similar was very different. I was walking down some steps – no, attempting to walk down them, more like – at the top of Leith Walk. I couldn’t do it. I sank down to the ground, weeping. I rang my husband, full of despair and anger.

“Are you okay?” he asked.

“No!” The word explodes, as if this situation is my husband’s fault. But he’s supported me throughout the whole business of blindness, brain scanners and countless medical appointments.

“What’s the matter? Do you want me to come for you?”

A brief internal battle ensues, as pride struggles with need.

“Yes, just come now.”

Night after night in those months following the diagnosis I harangued my husband. Why me?

I discover from others that this mix of emotions – anger, denial, bargaining – is a normal way to come to terms with the diagnosis of a major illness.

It’s often described as a kind of grieving process and it’s typical for people to cycle through the stages towards acceptance.

Sat in the café today with my daughter, neither of us is unduly worried. A bit embarrassed, perhaps. But this kind of stuff is no longer an emergency. It’s happened too often by now to rate as a crisis.

Often enough for both of us to start accepting this as part of our family life. I’ve managed to rebuild a life around the losses meant by this illness, though it’s very different from the one I used to lead.

Nowadays I wake up from my medicine-induced slumbers with more acceptance of having MS. Okay, I’ll be honest; of course I still worry and wish that things were different. On a bad day I’ll be Googling treatments and miracle cures into the small hours; as if I can Google away the illness.

But I have better days too, days when I might even be reaching that nirvana of acceptance about the whole, frightening business.

It turns out I need to accept my MS, if I’m to have any hope of enjoying this life. And, after all, it’s the only one I’ve got.

Helen Fowler is a journalist and MS campaigner from Edinburgh