When her only child hits his teens in a few years, Aoife Kirwan, 29, knows she’s going to be the “uncoolest thing in the world”.
But that’s not her top reason for being passionate about making lasting memories right now with her nine-year-old son Adam.
Aoife was diagnosed with multiple sclerosis (MS) six years ago. She has relapsing remitting MS — periods when the disease is ‘active’ and symptoms flare up.
“I don’t know what the future’s going to bring, so it’s important to take opportunities when they come,” she says. “I don’t wait to do things — I do them when I can.”
Last year, Aoife took Adam to visit her sister in New Zealand for five weeks. Adam’s a big Manchester United fan so they went to Old Trafford too in 2016.
But the memories are also ordinary, rooted in the everyday.
“Like playing football in the garden or reading Harry Potter together,” says Aoife. “Adam’s a big reader. We religiously read together. Early on, I read to him. Now he reads aloud to me.”
For Kildare-based Aoife, “if something happens” — and by this she means if her MS worsens — she and Adam “will have lived these experiences together”.
To mark World MS Day tomorrow, MS Ireland and Novartis have released research showing quality of life of people living with MS in Ireland is 32% lower than for the general population.
The study looked at mobility, self-care, doing usual activities, pain/discomfort, and anxiety and depression. Almost 80% experienced pain and discomfort; 78% said they can’t complete daily living activities (getting dressed, cooking, and washing); 72% cited mobility issues; and 60% experienced anxiety/depression because of MS.
Aoife’s biggest issue is fatigue.
“I wake up after a night’s sleep and I’m still tired,” she says. “I have a full day ahead and I feel like I’m just going to bed. I have this extra burden of fatigue that makes life harder.”
Diagnosed during her final year studying Visual Arts in WIT, Aoife had experienced increasing numbness on her right side.
“I got stuck in London during the cold winter snap in 2010,” she says. “My feet went numb. I thought it was the cold but I couldn’t warm them when I got home. The numbness spread to my face. I was biting my lip when I was talking. It was starting to hurt, so I got proactive about getting to the doctor.”
The research reported Ireland as being below the rest of the EU in terms of numbers of people with MS working — six in 10 people living with MS work in the EU compared to just over four in 10 in Ireland.
“I do have this sense of ‘hurry up, get things done’,” says Aoife. “I worry about not being able to achieve things fast enough. Statistically, between 60%-80% of people with MS have to give up work within 15 years of disease onset. So I’d be 38 if that happened.”
Aoife works for MS Ireland in information, advocacy, and research.
MS Ireland and Novartis have rolled out a series of ‘MS Life Hacks’, crowd-sourced from people living with MS. Based on real-life experience, they help overcome issues people with MS face, e.g. buying clothes, cooking, practical ways to manage medication.
Search for #LifeWithMS on social media.
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