‘Having early-stage MS makes me get off my backside and keep going’

I was probably getting symptoms for a long time but I didn’t know what they were. After my children [seven-year-old twins, Leon and Mya] were born, I felt my energy levels were very low. I was wondering if it was because I had young children and I was getting older, but I was only 33 then.

If I was sitting at work, I’d be wondering how I was going to get the energy to drive home. I had had odd numbness over the years, and I’d drag my leg a bit but mostly in situations where I was under intense stress. Then it went away, so I explained it away.

I’m the arts officer for Kildare County Council, and about 4½ years ago, we had a readers’ festival in Kildare. We had guest authors and I very much needed to be in host mode.

Over the weekend, my eyesight got gradually more blurry, to the point that on Monday morning on my way to the doctor, I just didn’t feel safe driving. It looked like torrential rain on the windscreen, but it wasn’t raining.

Thankfully, my eyesight cleared pretty quickly. If I’m stressed, my eyes sometimes feel like I’ve got Vaseline on my eyelid. You feel if you wipe it, it’ll go, but it doesn’t.

Symptoms

So many people have asked about my symptoms and when I say fatigue, they interrupt me to tell me about their fatigue.

There’s a difference between tiredness and fatigue. The only thing I can compare it to is after having children, where you haven’t slept for nights. You could sleep all day and still wake up exhausted. It can be very debilitating.

I’ve relapsing-remitting, so that’s the early stage MS. As regards statistics for who progresses, I did a bit of research and then thought, I don’t need to know. I could worry myself looking at them, and there’s no point.

I’m quite well since I’ve been diagnosed. I’m on an Interferon injection; it goes into my leg muscle once a week. The side effects of the medication are quite bad. I have flu-like symptoms once a week. I’d have a poor night’s sleep and often strange dreams, and then I’d wake up with cold or hot sweats. I’d love if there was something less invasive.

I’ve a very busy job, and my little boy isn’t sleeping at the moment. That’s stressful for any parent, and I’m a single parent.

Fatigue is a constant battle. I try to ignore it. I should probably rest more, but I love my job.

I do worry about whether I’ll be able to work in the longer term. I’ve two young children now, but there’s college and everything. But there’s no point in worrying about two children going to college in 10 years’ time. I can only do as much as I can.

I feel I just need to get up and live life. MS certainly gives me the attitude to get off my backside and keep going.

I am well but I am conscious that other people with MS have a story very different to mine.

Cuts on my brain

The twins know that I’ve got little cuts on my brain that make me feel sick sometimes. It was very much simple child’s language that I used, and they think it’s funny that Derek, my brother, has MS but that he has trouble walking and I don’t.

My little boy asked me recently would MS make me die. I just said no, it can make my life harder but it won’t make me die. Even some of my relations and friends have said things like, how long will it be before you get really sick? The answer to that one is that none of us knows.

We’re trying to be very good ambassadors for the Readathon campaign. This is the first year the twins are doing it. It’s a good age, coming into second class; they’re more independent readers than they were. I’m hoping we’re going to do some events in their school as well and I might do something with the students.

A lot of it is balance; I’m trying to balance minding myself with rest, giving the children lovely experiences but resting at the weekends, [managing my] diet but also treating myself.

I don’t want to be thinking about MS all the time. I just want to live life normally.