Having suit jackets but no matching trousers in her wardrobe – that’s something Limerick native, Mary Devereux, in hindsight, believes could have been an early indicator of Multiple Sclerosis (MS).
She was falling constantly – and ruining trouser knees. “I always seemed to have more suit jackets than pants,” she says.
“I was always falling so the knees were always gone out of the pants. At the time I didn’t put it down to anything though.”
Mary, at the age of 44, some 14 years ago now, had a responsible job as a co-ordinator for a crèche company. She was overall manager for 600 children and 100 staff across several counties.
“I was the main earner and loved my job and thought of myself as a ‘fixer’ but I couldn’t fix myself,” she says.
She also had two other symptoms during the two years prior to diagnosis. Apart from the regular falls, severe pain in the calf of her right leg was a major concern.
“The pain was dreadful,” she says, “and I couldn’t get answers for love or money. I had gone from being very active to not being active at all because putting any weight on my leg just meant continuous pain.”
At the time pain was never looked on as an indicator for MS, so it never crossed her mind. ‘Cog (cognitive) fog’ or brain fog was another concern for her in the lead-up to her diagnosis.
“I knew there was something wrong with me but I just didn’t know what,” she says.
“I thought that it was a brain tumour or early onset Alzheimer’s perhaps, as I couldn’t cope with more than two people talking at a time and I couldn’t handle noise, but the main symptom was the leg pain.”
Diagnosis
She finally got an answer in 2010 after seeing several consultants.
“The last guy looked at me with my black and blue knees and was able to join the dots, thank God, and he referred me for a brain MRI. That showed significant scarring and lesions so there was no doubt, it was MS.”
That was Valentine’s Day, 14 February, 2010. “I even remember the time – 5.20 pm,” she says. Mary was diagnosed with the slow form of primary progressive MS.
“There are a few types including relapsing/remitting where it comes and goes but I don’t get a break, it is just progressing slowly, continuously,” she says.
At present, Mary uses a rollator for support when she is out, and a stick when she is at home. She found the diagnosis very difficult to accept initially.
“My heart fell into my stomach,” she says. “It’s the sheer shock of it. Your mind immediately jumps to ‘I’m going to end up in a wheelchair’. Looking back, I ran from the diagnosis for five years, putting it in a (mental) box, until it caught up with me.”
Symptoms like spasms and pain were worsening, but it was losing her driving licence five years after her initial diagnosis that necessitated the greatest changes.
“On my second driving assessment I drove into the test centre but wasn’t allowed to drive home,” she says. “That was just devastating.”
Telling her husband, John, that she could no longer drive and that she would have to give up her job was extremely difficult. “I was a fiercely independent person and now I’d have to rely on others,” she says.
“My children were teenagers and still in school and suddenly I couldn’t drop them off or collect them. I wasn’t going to be the first person they were going to call anymore because I wouldn’t be able to get to them.”
A house move was then necessary because she could no longer drive.
“We moved house in order to be on a bus route so that our son and daughter could get the bus to school. I’m able to use it, too, to go to the local shopping centre now if I want to get out of the house for a while.”
Mary found what she calls the ‘middle stage’ since her diagnosis the most difficult.
“When you bring a long-term illness into a house or situation it’s exhausting for everybody because if you’re sleeping bad and your pain is bad that mood nearly takes over and you’re not at your best self,” she says.
“When things are good everyone is good. During the first five years I was very conscious of it and how long I was going to be able to stay in work. I gave up my job on my 50th birthday in 2016.
“The next five years, from 2016 to 2021 weren’t great. Only because I am out of that bad time I can now make some peace with it.” Mary could never be a person who says ‘I’m not defined by my illness’ or ‘it hasn’t got me’, she says candidly.
“It does have me, and it has me worse sometimes than others. MS just invades you, mentally, emotionally and physically. It’s going to get you somewhere along those three points.”
Improvement
Things have improved greatly in many respects, however. The medication she is on now helps a lot and she is more at peace with what’s happened.
“Whatever pain I’m in this minute, it won’t be like that, hopefully, in the next hour – that’s the way I have to look at it,” she says.
Mary has found counselling very helpful also as it taught her coping mechanisms. She also attends a monthly support group organised by the support charity, MS Ireland.
“I think I blubbered at that every Friday once a month initially, but eventually that turned into good old conversation and laughing and joking.”
She has also been doing a personal development course with MS Ireland for two years which has helped a lot. “MS Ireland is a brilliant organisation. By doing that, I got myself back to a cognitive level that I never thought I’d reach again.”
At this stage, Mary feels that she just has to get on with it.
“I try to show good example to my two lads. I say things like ‘you’ll get up more times than you’ll get knocked down’. That’s because you have to. Watching them living their best life is very important to me.”
Mary recently told her story in the Dáil as a patient representative for MS Ireland.
“Being asked to do things like that, and media interviews, helps me get my voice back. I have things to say and I’m able to say them. Being able to represent those with MS and speak in public – they are all things that give me joy now.”
Dr Rebecca Maguire, who is Associative Professor of Psychology at NUI Maynooth, has relapsing/remitting MS. She was involved in the analysis of the MS My Needs survey data and findings.
“We found that 91% of people experienced some impact because of MS. It’s a positive that 83% of people with MS are engaging with neurology services, although there are waiting lists, with 19% waiting over six months.
"Mobility is one of the main challenges so physiotherapy services are very important. It did come as a surprise how high the needs for psychological and emotional supports are.
"In relation to work, remote/hybrid working which started during the pandemic has been a positive. One third of those surveyed who were working were able to avail of this for part of the week, but some didn’t have this option.
"We found that 20% of those with MS didn’t have the Long Term Illness card which they are entitled to, so it’s about increasing awareness of things like that.”
Key insights from the survey
Key findings
The survey, which gathered responses from over 900 people with MS (PwMS), revealed significant insights into the diverse experiences and needs within our community: