“SOMETIMES IT HELPS to have a child’s perspective on things,” Aoife Kirwan says.
She’s mother to 9-year-old Adam, and says that when she’s having a bad day, his commentary can lift her out of her worries – and get her laughing.
“He sees the advantages to it, like quite often we don’t have to queue into things. We went to the GamerCon, were brought to the front of the queue and he said to me ‘Isn’t it kind of ok you have MS?’”
For Aoife and the 9,000 other Irish people who have Multiple Sclerosis, their symptoms vary massively and can include fatigue, numbness, memory loss and sometimes temporary blindness.
But there are a lot of misconceptions around the condition too – most people are diagnosed between 20 and 40 years of age. Aoife was diagnosed at 23.
Diagnosis
“I first noticed numbness in my index finger,” she tells TheJournal.ie. She was in her final year of college, and put the feeling down to a lot of writing.
Eventually the numbness spread up her right arm, and she went to the GP, who told her it was nerve damage, possibly caused by the way she was sleeping.
In 2010 Aoife went to London for her 23rd birthday, and while waiting at the airport her feet went numb. It was a winter of really bad snow, and even though she was wearing ugg boots, she put it down to the freezing weather. But nothing she tried improved it.
“I’d wear flat ballerina pumps to college and I’d walk off and wouldn’t realised my shoe had fallen off. I had to start wearing shoes like converse that were tied to my feet.”
But even then, nothing was so long lasting that it made her worry.
Then, one weekend in February between Friday to Monday, she lost 98% of the sight in her right eye. She was sent to the eye and ear hospital, and after an MRI scan was asked what she thought was wrong.
I’d been Googling my symptoms and I watch way too much Grey’s Anatomy. I said I think I have MS.
“I was relieved I wasn’t imagining things, I was relieved to have an answer. But I didn’t like the answer.”
About MS
There are different forms of MS.
Around 85% of diagnoses relate to relapsing and remitting MS, which means that you might be fine and experience little to no symptoms for a while, but might experience a relapse, or a really significant worsening of symptoms for 24 hours or up to a week.
The second type of diagnosis is ‘secondary progressive MS’, which is more progressive from the outset, and means there are less periods of time when you’re well.
The third type of diagnosis means you have very progressive symptoms, which may vary. This represents about 10% of diagnoses.
If you have the most common form of MS, remitting and relapsing, in half of cases it may develop into a more serious form – which is why early intervention and lifestyle changes are important.
Quality of life
Today is the 2017 World MS Day, and the theme is ‘Life with MS’.
But a wellbeing report has some worrying figures for what that means when someone with MS lives in Ireland.
“We asked 541 Irish adults with MS about their quality of life,” Ava Battles of MS Ireland says. “And the research we’ve done found that their quality of life is 32% lower than the average person. In men it’s 5% lower compared to women.”
She says if you went to a GP 25 years ago with MS symptoms, the most they could do would be to put you on a course of steroids and to go home to rest.
“…whereas now, we know disease modifying therapy, remaining physically active and managing stress levels are incredibly important. Research changes the landscape.”
There are also fewer people with MS who are employed in Ireland, compared to the European average. Less than 50% of people with MS are in employment, while the EU average is almost at 70%.
Battles says that the solutions to this don’t cost a lot.
“A chair in a quiet place for a nap, access to a parking stop near the door to your office, allowing people to work half an hour later to avoid traffic. They’re the kind of simple things that allow people to be able to work for longer,” she says.
People want to work, they want to lower their disease state, and they want access to treatment in a timely manner.
Leinster House
Today, Aoife and MS Ireland will address the Dáil about the issues for people with MS, which include limited access to neurologists and rehabilitation treatment.
Here are a few paragraphs of what Aoife will tell TDs in Leinster House:
I’m many things. A friend, a sister, a mother. I’m a person with hopes, dreams and ambitions, I’m just like you – a person who makes up our country’s population. I am Ireland. I’m proud of my heritage and my country, but I am scared.
I was diagnosed with remitting and relapsing MS aged 23. I don’t think there’s any way of receiving that news as a young person a student about to embark on life’s journey after my education. I was heartbroken and instead of feeling excitement about the future, I feared it.
Aoife says she grieved for a life she had planned, and worried about what would happen if her condition deteriorated, but says simple things like planning and knowing your limits make a huge difference.
“A healthy lifestyle, listening to myself, accepting my limitations (if I know something is just too much for me), a lot of planning, and to be ready for that bad day, when I’m not able to do anything.”
She says her son constantly reminds her of how everyone has their own problems – she might have MS but he has to wear glasses everyday.
And although she worries about the effect her condition will have on Adam, she reminds herself that taking a break every now and then is something all parents do.
“If it’s a bad day for me, that means it’s a movie day for him, he accepts that. I’m no different than any other parent in the country, it’s just I’ve different reasons.”
Today marks World MS Day. You can find out more how to support MS Ireland here.
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