A Belfast woman has opened up about how her diagnosis with multiple sclerosis (MS) was "an unexpected huge shock".
Sheena, 69, was diagnosed with the condition in December 2018 just as she was preparing for Christmas. The diagnosis followed an exploratory MRI for a collapsed, left foot and it was news that turned her world upside down.
She says it has brought new daily challenges such as fatigue, mobility issues and pain. She says these must be managed, so that she can get through each day as easily as possible and gauge her achievement.
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Over 5,300 people live with MS in Northern Ireland with an estimated 219 new cases each year. MS is a neurological condition that is unpredictable and different for everyone. The condition affects the brain and spinal cord and impacts how people move, think and feel. Symptoms are different for everyone and often invisible and include pain, mobility issues and fatigue.
Sheena has shared her story as new research from the MS Society/Opinium reveals that although the vast majority (96%) of people in Northern Ireland are aware of multiple sclerosis (MS), over three quarters (77%) said they only know a little or don’t know much about the condition or how it affects people.
With misunderstandings and misconceptions about the condition making life harder for people with MS, both Sheena and the charity wanted to understand more about awareness levels of the condition.
“Currently, there is a lack of understanding around MS, which has many invisible symptoms, so misunderstandings are normal and frequent. I want to contribute to raising awareness of what this condition means,” she said. “For instance, when talking about MS, use of language is key.
“Tiredness and fatigue are different and are often confused. With rest, tiredness goes away. Rest for fatigue is ’survival management’ because fatigue is constant. If I had not got involved with the MS Society, I doubt if I would know this vital language tip.
“For me, choosing to shop alone usually nourishes my independence. This works best at the start of the day, when my energy levels are better. Parking is more accessible, and I can avoid crowds and queues, so I don’t have to stand and wait, which is hard to sustain, even on crutches.”
Sheena says one occasion stands out as an example of a clash between ‘perception’ and hidden symptoms: “I had a full trolley and was being as quick as I could to bag-up my groceries, since there was just one till operating. Suddenly, a voice down the queue behind me, shouts out, 'Hurry up!'.
“Perhaps they hadn’t seen that I had already let three other shoppers go in front of me. I felt awful, but I did not hold up the queue any longer by explaining. If this happens again, I will ask the assistant to open another till and wield my crutches, as I leave!
“This brings me to another point. We are not alone! The MS Society has been a phenomenal help to me, as I navigate a condition that I knew nothing about, prior to my diagnosis. I would encourage anyone to get involved for support or to help out, if you can.
“There is a wealth of reliable information, booklets, classes, counselling, physio, in person and online events, that all help to build our sense of the MS community as a family. The charity promotes understanding of the many variations of this debilitating condition and walks alongside our unique journeys. The MS Society really gets it!”
The survey also revealed that of adults in Northern Ireland aware of MS:
45% personally know someone or have known someone with MS Only three in ten (31%) know MS is more prevalent in women than men Only 23% know MS is most likely to be diagnosed in people in their 30s and 40s Less than a third (29%) know that smoking, obesity and lack of sunlight can increase a person’s risk of developing MS.
Stewart Finn, Country Director at the MS Society Northern Ireland, said: “It’s great so many people in Northern Ireland have heard of multiple sclerosis, but these new stats show we have lots of work to do to increase understanding around the symptoms of MS and the impact on people’s lives.
“MS can be debilitating, exhausting and unpredictable and we know it often strikes at a time when people are making big life choices about careers, relationships and family. Too many people in Northern Ireland are having to fight for the treatments, services, care and support they need to ensure they can live well with MS. Greater understanding of MS could make a huge difference.
”One of the most effective ways for us to do that and create lasting impact is through local campaigners. Whether they have MS themselves or are supporting someone who does, we value everyone who wants to be involved in our campaign for change.”
If you would like to get more involved with the MS Society in Northern Ireland and join our network of campaigners email [email protected] or follow the link Campaign for MS - Stand Up For People With MS | MS Society UK.
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