Living with MS

Sharon Ní Chonchúir breaks her silence about living with MS to give people inspiration and motivation to help themselves.

My name is Sharon and I’ve got multiple sclerosis. It sounds as though I’m introducing myself to an Alcoholics Anonymous meeting but I have cause for solemnity. I was diagnosed with this condition four years ago but it’s only in the past few months that I’ve begun to be open about it with those around me.

There was a reason for my secrecy and an even bigger reason for coming out into the open. I will have to go all the way back to the beginning to explain both to you.

This particular chapter of my life started seven years ago. One morning in May 2007, following a particularly stressful few months, I woke with a tingling sensation down the right side of my body. It was similar to pins and needles but it didn’t go away. I rang my doctor and, fearful of a blood clot, she advised me to rush to the hospital.

A week and many tests later, doctors ruled out a blood clot but were worried I had MS. My test results were inconclusive at that stage so once the tingling subsided to the extent that I was able to ignore it, I was sent home and life returned to normal.

It stayed that way until 2010. That summer, my right side stopped working properly. It was weak and didn’t do what I asked of it. I couldn’t drive. I couldn’t carry things without dropping them. I often missed the keys I was aiming for when typing, making work next to impossible. And I was in constant pain. Cue more tests and a definitive diagnosis of MS.

Suddenly, I was very frightened. Every single association I had with MS to that point was a negative one. As someone who had always been healthy, I had naively assumed I’d live to be one of those old ladies who inspire others with their vim and vigor. My diagnosis destroyed this vision of my future, replacing it with images of wheelchairs and disability. All I felt when I thought of MS was a deep and dreadful sense of panic.

Telling others made me panic even more. When I told family and friends, I saw shock and pity reflected in their eyes. I’d never been on the receiving end of pity before and it was not a place I wanted to be.

So I kept my diagnosis relatively secret. I live in Dingle, a small town where everyone knows everyone else. I didn’t want to be known as someone who was sick. I wanted to be seen as the same strong person I’d always been.

I didn’t have much professional support at that time. My neurologist responded to all of my questions with the same stock answer: the outcome is different for everyone; nobody can tell what will happen to you.

Her words made me feel powerless. They rendered everything beyond my control. My future – which had always shimmered brightly and enticingly in the distance – became a darker and more ominous place.

I turned to the Internet, but what I found there frightened me too. Worst case scenario after worst case scenario: people in pain, people who were disabled, a litany of suffering…. I couldn’t bear to read about it and did not want to contemplate that this was what lay in store for me.

Instead, I started taking medicine and put MS to the back of my mind. It sounds simple when put like that but I’d be lying if I said it was easy. I had to inject Betaferon into my body every second day. It hurt. It left bruises. And for the first three months and intermittently after that, there were side effects.

Mostly, these consisted of flu-like symptoms. I’d take the medicine and within an hour, I’d be shivering with cold. I’d have aches and pains all over. And I’ve had a raging headache. I eventually learned to take the medicine at night time so that I wouldn’t have to spend all day in bed. At night at least, I’d be in bed anyway.

These side effects faded after three months (though they would flare up from time to time just to remind me how toxic my medicine was) and my life was able to return to normal. At that stage, I began willing myself to forget about my diagnosis.

Life allowed me to do this too. In fact, it allowed me to become busier than ever. I did more writing. I started teaching. I even opened what became an award-winning café. I was so busy I didn’t have time to think about being or becoming ill.

That was until I got a wake-up call from a friend who rang to tell me that she too had been diagnosed with MS. She could hardly speak for crying, and in her eyes I could see all the fear and worry I had been repressing for so long.

Months passed and as she struggled with her diagnosis, I started to accept my own. She discovered Dr. George Jelinek and his book Overcoming Multiple Sclerosis and in introducing it to me, she changed my life.

Dr. Jelinek is a distinguished Australian physician. His mother had MS and took her own life when she was no longer able to live with the ravages of the disease. He was diagnosed with MS when he was in his 40s and because of his mother, had more negative associations with it than I ever had.

But as a doctor, he was able to do something about it. He did research and over time, compiled his findings into a book which sets out dietary and lifestyle changes that have been proven to minimize the long-term impact of MS.

These changes are all healthy ones. The diet is a whole-food, plant-based one that reduces intake of saturated fat and harmful oils. Meat, dairy, fried foods, and chocolate are out but fish, vegetables, fruits, almonds and wine are most definitely in. This diet is combined with vitamin D supplementation, regular exercise and a focus on positive mental and emotional health.

Within four months of starting this diet last July, I was feeling a lot better. The tingling which had been a constant irritant since it first started seven years ago completely disappeared. I felt healthier than I had ever done before: so much so that I stopped taking my toxic medicine.

Things derailed at Christmas when I stuffed myself with turkey and chocolate. But the pain I suffered in January convinced me never to do that again.

That minor derailment aside, I’ve followed the diet without deviation and now feel healthy and full of hope. This is why I’m writing this article today. MS is a serious condition. It’s not something you should ignore as I did; crossing your fingers that you’ll be one of the lucky ones with a mild form of the disease. Instead, you should do all you can to stay healthy. Give your body what it needs to combat the condition and by doing so, you may just overcome your MS.

I can’t promise you a cure but I can promise you some hope. When I was first diagnosed, I couldn’t see that there was any way in which I could control the toll MS would take on my body. But thanks to this new diet, I feel full of hope for what I once again believe will be a long, happy and healthy life. If you or anyone you know has MS, I feel it’s my duty to share that sense of hope with you.

For a complete fact sheet on multiple sclerosis, contact MS Ireland: www.ms-society.ie