Helen Fowler: Fear of MS is always at the back of my mind

IT'S freezing and snow is swirling around us.
Writer Helen FowlerWriter Helen Fowler
Writer Helen Fowler

My children and I are desperate to get into the warmth of our house. But the key won’t seem to go in the lock. Perhaps it’s not the right key. I check, holding it up towards a street lamp for a closer look. Yup. It’s the correct one.

None of us want to stay out here in the cold. I try again. It’s getting the key in the lock that is defeating me.

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“Let me,” says one of my children. “Let me.” I try one more time myself. I notice my hand is shaking. But this time the key goes in. We tumble into the house.

I’m meant to be going out later and would like to put on a necklace I’ve had for years. But I’m finding it hard to move the clasp that allows me to fasten the necklace. I’m stood in my bedroom, hands behind my neck, fiddling with the catch.

This isn’t working. I twist the fastening round so it’s in front of me. I stand close to a mirror in the hope that will help.

If I can just push down the little clasp with my index finger, then I can attach the two ends together. But I can’t hold it open for long enough. The fastening is slipping; my fingers seem to have doubled in size overnight. This is something I’ve done hundreds of times without thinking; today is different.

I don’t seem to have proper sensation in my fingers. Their tips are numb. And this simple task is defeating me. I feel a surge of panic. This must be my Multiple Sclerosis (MS).

Other parts of my body have gone numb with the disease before, but not my hands. Until now.

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I decide to put the necklace aside. Earrings will have to do, if I can get them in my ears.

Jewellery isn’t important in itself. But not being able to do up the clasp is another matter.

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Worry eats away at me while I’m out with my husband. Is the numbness in my fingertips the beginning of a major episode like the one from eighteen months ago? I can’t say when the numbness started and I have no idea what may have triggered it.

I know from discussions with doctors at the Anne Rowling Clinic that these so-called minor symptoms can come and go, so there’s a good chance the feeling will return after a while.

But it’s hard to know if that will really happen. The clinic is aware of the uncertainty that comes with the illness. It’s working to develop a tool that will predict the severity of MS.

Later that same day I’m reading some old diary entries from around the time of my last big attack. The writing looks huge. I obviously had trouble forming letters. It’s as if a black spider has sprawled across the page.

I am relieved my handwriting got back to normal after that episode, though nobody at the time was prepared to bank on a full recovery. That’s the thing with MS. It’s unpredictable.

Having MS should help me to live in the moment. And I am determined to enjoy the times when I am in remission from MS to the full. Playing games at home with the family. Cooking. Picking my kids up from school.

But at the back of my mind is always the fear of my MS. It’s a spectre that is hard to exorcise. I never quite know what it’s planning to do to me next. If research can give us a better idea of what the illness has up its sleeve, so much the better.

Helen Fowler is a Journalist and MS campaigner from Edinburgh

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