Learning to live with MS, one step at a time

IRELAND’S 2005 Eurovision entrant, Joe McCaul, made an emotional announcement last week — he has been diagnosed with Multiple Sclerosis (MS). The baby- faced McCaul (25) did not fit people’s idea of a person with MS. His anguish reminded me of my own diagnosis, two years ago.

Learning to live with MS, one step at a time

On the day Queen Elizabeth visited Dublin, I was in the neurology ward of Beaumont Hospital, with intravenous steroids pumping into my arm. In the previous week, I had problems with my vision, and nausea and blinding headaches.

“Optic neuritis,” the ophthalmologist said. Too sick to ask questions, I went home to wait for an appointment with a neurologist. I didn’t ask why she was referring me on. When I googled ‘optic neuritis’, multiple sclerosis came up again and again. It was a slap in the face, but a jigsaw of seemingly unrelated medical complaints made sense. Nonetheless, it was a big shock to hear a neurologist in Beaumont tell me that I had lesions on my brain. My poor husband Ray thought I had a brain tumour.

In the days following my admission to hospital, well-meaning visitors !! said ‘sure, at least it’s not cancer’ They made me feel confused and ungrateful, because I was feeling very low. I spent my week there crying uncontrollably in the bathroom. I missed my children, four-year-old twins, Leon and Mya, terribly. But when my husband brought them in to see me, I asked him not to do so again — it was just too much for me. It was MS Awareness Week and my husband brought me information leaflets, but I was angry with him for ‘jumping the gun’, even though I knew in my heart it was true.

When I came home, shaky and low, one of my first visitors was the MS regional co-ordinator, Roseanna Dukes. My husband had invited her. Roseanna said I should give myself permission to be upset, frightened or angry, to come to terms with this diagnosis. She told me not to make any sudden decisions about my work or lifestyle. This advice and affirmation helped me see beyond the initial shock.

Thankfully, I regained most of my eyesight in the following weeks, although I still have some blurring on my left eye, as if I have water resting on my eyelid. Once my diagnosis was confirmed in September, I began taking interferon drugs. I administered drugs every two days via my stomach or legs, by injection. I found the injections hard on my skin, so I changed to a once-weekly option. The side effects can be pretty severe. I can wake in the middle of the night, in a hot or cold sweat, aching all over. I feel hungover the next morning (as if I had drank a large bottle of wine — all the pain without the craic). Taking pain killers and drinking water minimises this, and having a husband to get hot-water bottles, drinks and rub my back is helpful too. If nothing else, the menopause will be a doddle after this.!

I returned to work five weeks after my first hospital visit. It was a little too early, but I needed normality, or whatever my new normal was going to be. It was hard to rest at home, with two lively children using the bed as a trampoline — not the best activity when mammy is in bed with headaches and nausea. Thankfully, my employer, Kildare County Council, has been very supportive. My post as County Arts Officer is demanding and as the main breadwinner in my family I worry about my ability to work in the long term. But there is no little in worrying about something that may never happen, so I try to look at life in bite-size pieces. I guess every working mother feels guilty, but a working mother with MS is worse. There are days when I don’t have much energy for my lovely children, and I sleep while they are having adventures. On my mostly good days, I make the best of my time with them. I’m at my happiest in the garden, mucking around with the family, or entertaining friends.

My main MS symptoms, apart from my blurred vision, are fatigue and chronic pain. I sometimes despair and feel overwhelmed. I am more self-aware of this now, and know that the feeling will pass, like a dark cloud making way for sunshine. Listening to mindfulness sessions on Youtube has helped. I’m pretty much caffeine-free. A vegetarian since I was 15, I am considering embracing the Swank diet, but am battling with the thought of replacing stringy mozzarella with fat-free (fun-free) cream cheese. Approaching my 40th birthday, next month, I am feeling positive.

At the time that I had eyesight problems, my brother, Derek, who is a year older, had tingling in his fingers. He was recently diagnosed with MS. He lives in England, but it’s great that we can support each other. There is no MS history in our family, so it’s been a big shock to everyone that we’ve both been diagnosed.

One of the most unpleasant experiences since my diagnosis was making a claim on my critical illness insurance policy. The policy was for a significant sum of money and covered illnesses including MS. Unfortunately, I made two innocent errors on the application form, when I applied for the policy in 2005, and the insurance company disputed my claim. I had the option of fighting the decision through the legal system, but I decided I couldn’t deal with the stress. The insurance company also cancelled my life assurance policy and I had an anxious few weeks before my broker secured a new policy for me.

When I heard about the recent death of Marie Fleming, who had MS and who campaigned for the legalisation of assisted suicide, I was terribly upset and wrote a response to it on my Facebook page. I was overwhelmed by the reaction. Many people apologised for not having realised how MS affected me.

Not everyone wants to ‘go public’ with their diagnosis. It is a personal choice, but I’m glad that I did. I hope that Joe McCaul will get comfort and energy from his decision and that he seeks support from his local MS service. If I was to try and reassure Joe, I would say that his dark cloud will pass too, and when the sun shines on his face, it will be warm and sweet.

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