Rosie McCormack (25) was getting on with her life in the autumn of 2014. She was excited to be moving house, enjoying her job as a subeditor with the Irish Farmers Journal, loved running as a hobby and certainly wasn’t expecting illness to strike.
Extreme fatigue and vision problems led her to seek medical advice, however, and a full diagnosis of multiple sclerosis (MS) came seven months later – in May of this year.
Six months on, however, she is thinking positive. “None of us knows what’s round the corner,” she says. “You know you’re going to have MS for the rest of your life, but I don’t want it to define me. My instinct is to be positive. I can’t control the MS, but I can control how I react to it.”
MS is a chronic disease of the central nervous system. It occurs when the immune system abnormally interferes with the insulation around nerve cells in the brain, spinal cord and optic nerves. This causes inflammation and damage that can result in muscle weakness, fatigue and vision problems.
With Rosie, it was tiredness and sight issues that occurred first. “I’d had a bit of a mad week,” she says, “and I remember feeling dizzy when I was driving to work one morning. I had to pull over, but the dizziness passed as quickly as it came.
“I was left feeling very tired afterwards, though, and even when I got home to Sligo that evening I felt absolutely exhausted. My parents thought I was getting a bad migraine, but I got up next morning looking even worse. It was an exhaustion like I’d never felt before: like my eyes didn’t want to stay open. Keeping them open was a physical effort. Another night’s sleep didn’t help either. I woke on Sunday morning thinking, ‘Why can’t I shift this?’”
Rosie accompanied her father to have an NCT done on her car that Sunday morning, and it was then that she realised she wasn’t seeing properly.
“I remember trying to look around in the waiting room and walk to the desk, but I just couldn’t see anything properly. Obviously, the double vision had started at that stage, but it didn’t click with me that it was that. I just felt as if I was really drunk. It was weird,” she says.
Going back to Dublin that night with her brother, they stopped at a pharmacy in Carrick-on-Shannon. “I remember asking the pharmacist if he could suggest anything for my eyes, as I couldn’t look to the right. As I get migraine with aura, I honestly just thought it was all connected to that and that I’d eventually get the full-blown headache. He just said, ‘I think you need to get that seen to.’”
DIAGNOSIS
A visit to her optician the next morning led to an immediate referral to the Eye and Ear Hospital and then on to St Vincent’s. “I wasn’t frightened, though I probably should have been,” she says, “but you never think it’s going to be anything serious. I guess it’s your mind’s way of protecting you: you go into fight or flight mode.
“I had a CT scan in Vincent’s, which was clear, but I was admitted, as they wanted to do an MRI. I was there for nearly three weeks after that.”
Rosie had many tests, including two lumbar punctures – not pleasant experiences – and, while inflammation did show up in her spine, MS was not diagnosed at that time.
“My mother did have MS at the back of her mind, though, as my grandad’s sister has it. When I mentioned MS to the doctor as a possibility, I thought he’d laugh, but he didn’t. He said it could be. I thought, ‘Oh, c**p!’ When you hear anyone mention MS, you can’t help thinking of the worst-case scenarios that you’ve heard in the news. I remember sitting in hospital then Googling ‘Could MS kill me?’ and trying to learn everything about it. But I still couldn’t make the connection between myself and this illness.”
Rosie had another MRI in December 2014 which, this time, showed a lesion on her brain. More lesions were visible in another scan in March. “At that point, they knew the disease was active. They diagnosed it finally in May.”
Telling her parents and grandparents was very difficult, she recalls. “I didn’t cry. I think I was in shock. I think a part of me also felt like I had to hold it together for everyone else, that somehow they’d be less upset if I was okay with it all.
“My fiancé, Niall, and I drove down to Sandymount after the hospital to ring my mother from there. I just remember her bursting into tears on the phone. We went home and went for a short run that evening, because I thought it would help. I kept saying to Niall: ‘Do I definitely have MS?’”
grieving
Looking back now, Rosie can see that she went through a grieving process. “A week later, we were in Dunnes and I lost the ticket to get out of the car park and just burst into tears. It was the first time I’d cried about it, and I just spent the whole evening crying. It’s funny the way it happens. It hits you out of nowhere over some little thing, but it’s important that you cry, really.”
Rosie is now on medication: daily injections that she administers herself. “I put the injection to the back of my mind every evening until I have to do it,” she says. She has some nervousness about this, as she had a bad reaction after changing to a three-times-a-week injection recently.
“It was scary and, while I was aware there could be side effects, I wasn’t prepared for how bad the reaction would be. I thought I was having a heart attack. The daily one seems to suit me better, so I’m staying on that now.”
A long-time running enthusiast, Rosie decided to do a half-marathon this September and raised over €1,300 for MS Ireland. “I took that as a focal point and I’m glad I did it, although the training wasn’t easy, particularly when I had weeks where the fatigue was really bad and running in even the heat of our Irish summer would cause me to start seeing double again.”
While Rosie’s vision did go back to normal, she can struggle to move her right eye properly when she gets very tired.
Life now means pacing herself to stay as well as possible. “I would do very little at the weekend or in the evenings if I knew I had a very busy week coming up. It’s tough at the start, but you have to learn how best to conserve your energy, and that means sitting down and planning out my week and prioritising,” she says.
Initially, she did find it difficult to accept that she has MS. “There was probably a bit of denial going on. I was pushing myself with the half-marathon, but the only way you can get on with it is to accept it and learn ways of coping and dealing with it, so that you can still do the things you love.”
But what’s Rosie’s advice to anyone newly-diagnosed with MS? “There is no wrong or right way to react to how you’re feeling,” she says. “You go with it, whether it’s crying or laughing. You learn to navigate your way through the grieving process.”
MS Ireland is brilliant, she adds. “Even if you don’t feel like you want to get in touch with them initially, it’s worth it just to know that they are there if you ever want or need them. I’ve started attending a monthly MS meet-up group and find it great. We just sit and drink coffee and talk about mostly non-MS things, but the support is there if you need it too.
“Initially, I tried to read every book I could get my hands on about MS, but I had to stop that. My instinct is to be positive now. Like I said, you can’t let it define you. There are days when you worry, of course, but you can’t dwell on the what-ifs. I think I’ve accepted it, but sometimes I think, ‘God, this isn’t fair.’
“Still, I know that lots of people live with MS and every evening I make a point of thinking of all the things that I’m grateful for.”
>> MS facts
FREE BOOKLET
MS Ireland have a booklet entitled MS explained for those newly diagnosed. They suggest that you:
• Give yourself time to come to terms with the news• Inform yourself about MS at your own pace• Speak to a professional • Listen and talk to others• Use the MS Information Line 1850 233 233 (10 a.m.-2 p.m.Mon-Fri) • While drug treatments can help with symptom management, a healthy lifestyle is also beneficial. A balanced diet, appropriate exercise and keeping stress to a minimum can give your body and mind the best chance to deal with the symptoms.ABOUT MS
• Approximately 9,000 people and their families live with MS in Ireland.• The cause of MS is unknown. Even though it is considered an autoimmune disease, the reason the body triggers an attack on itself is unknown. Scientists believe there may be a genetic factor involved that increases a person’s risk of developing the disease. • It is a complicated and unpredictable condition that varies from person to person. Some people may be only mildly affected throughout their lives while, for others, progression happens more quickly. The type of MS a person has will only become obvious over time. FOUR CATEGORIES
There are four categories of MS:
1) Relapsing/remitting. 85% of people are first diagnosed with this category which involves flare-up then recovery.2) Secondary progressive. 50% who start off with relapsing/remitting MS may later develop this form of MS. It generally occurs 15-20 years after diagnosis.3) Primary progressive. About 10% experience persistent symptoms from the start that become progressively worse.4) Benign MS. This is associated with very occasional relapses, with good recovery in between, and minimal symptoms over many years.new study
A new report entitled The Societal Cost of MS, undertaken by MS Ireland and supported by Novartis drives home the need for added support for those affected by MS, Dr Chris McGuigan, Consultant Neurologist at St Vincent’s Hospital said at the launch of the report.
MORE
INFO ON MS
See www.ms-society.ie for more information and support. MS Ireland says that, while there are many other sources of information about MS, not all of them are accurate or helpful. They suggest visiting websites operated by MS societies to ensure accurate information.
Rosie McCormack (25) was getting on with her life in the autumn of 2014. She was excited to be moving house, enjoying her job as a subeditor with the Irish Farmers Journal, loved running as a hobby and certainly wasn’t expecting illness to strike.
Extreme fatigue and vision problems led her to seek medical advice, however, and a full diagnosis of multiple sclerosis (MS) came seven months later – in May of this year.
Six months on, however, she is thinking positive. “None of us knows what’s round the corner,” she says. “You know you’re going to have MS for the rest of your life, but I don’t want it to define me. My instinct is to be positive. I can’t control the MS, but I can control how I react to it.”
MS is a chronic disease of the central nervous system. It occurs when the immune system abnormally interferes with the insulation around nerve cells in the brain, spinal cord and optic nerves. This causes inflammation and damage that can result in muscle weakness, fatigue and vision problems.
With Rosie, it was tiredness and sight issues that occurred first. “I’d had a bit of a mad week,” she says, “and I remember feeling dizzy when I was driving to work one morning. I had to pull over, but the dizziness passed as quickly as it came.
“I was left feeling very tired afterwards, though, and even when I got home to Sligo that evening I felt absolutely exhausted. My parents thought I was getting a bad migraine, but I got up next morning looking even worse. It was an exhaustion like I’d never felt before: like my eyes didn’t want to stay open. Keeping them open was a physical effort. Another night’s sleep didn’t help either. I woke on Sunday morning thinking, ‘Why can’t I shift this?’”
Rosie accompanied her father to have an NCT done on her car that Sunday morning, and it was then that she realised she wasn’t seeing properly.
“I remember trying to look around in the waiting room and walk to the desk, but I just couldn’t see anything properly. Obviously, the double vision had started at that stage, but it didn’t click with me that it was that. I just felt as if I was really drunk. It was weird,” she says.
Going back to Dublin that night with her brother, they stopped at a pharmacy in Carrick-on-Shannon. “I remember asking the pharmacist if he could suggest anything for my eyes, as I couldn’t look to the right. As I get migraine with aura, I honestly just thought it was all connected to that and that I’d eventually get the full-blown headache. He just said, ‘I think you need to get that seen to.’”
DIAGNOSIS
A visit to her optician the next morning led to an immediate referral to the Eye and Ear Hospital and then on to St Vincent’s. “I wasn’t frightened, though I probably should have been,” she says, “but you never think it’s going to be anything serious. I guess it’s your mind’s way of protecting you: you go into fight or flight mode.
“I had a CT scan in Vincent’s, which was clear, but I was admitted, as they wanted to do an MRI. I was there for nearly three weeks after that.”
Rosie had many tests, including two lumbar punctures – not pleasant experiences – and, while inflammation did show up in her spine, MS was not diagnosed at that time.
“My mother did have MS at the back of her mind, though, as my grandad’s sister has it. When I mentioned MS to the doctor as a possibility, I thought he’d laugh, but he didn’t. He said it could be. I thought, ‘Oh, c**p!’ When you hear anyone mention MS, you can’t help thinking of the worst-case scenarios that you’ve heard in the news. I remember sitting in hospital then Googling ‘Could MS kill me?’ and trying to learn everything about it. But I still couldn’t make the connection between myself and this illness.”
Rosie had another MRI in December 2014 which, this time, showed a lesion on her brain. More lesions were visible in another scan in March. “At that point, they knew the disease was active. They diagnosed it finally in May.”
Telling her parents and grandparents was very difficult, she recalls. “I didn’t cry. I think I was in shock. I think a part of me also felt like I had to hold it together for everyone else, that somehow they’d be less upset if I was okay with it all.
“My fiancé, Niall, and I drove down to Sandymount after the hospital to ring my mother from there. I just remember her bursting into tears on the phone. We went home and went for a short run that evening, because I thought it would help. I kept saying to Niall: ‘Do I definitely have MS?’”
grieving
Looking back now, Rosie can see that she went through a grieving process. “A week later, we were in Dunnes and I lost the ticket to get out of the car park and just burst into tears. It was the first time I’d cried about it, and I just spent the whole evening crying. It’s funny the way it happens. It hits you out of nowhere over some little thing, but it’s important that you cry, really.”
Rosie is now on medication: daily injections that she administers herself. “I put the injection to the back of my mind every evening until I have to do it,” she says. She has some nervousness about this, as she had a bad reaction after changing to a three-times-a-week injection recently.
“It was scary and, while I was aware there could be side effects, I wasn’t prepared for how bad the reaction would be. I thought I was having a heart attack. The daily one seems to suit me better, so I’m staying on that now.”
A long-time running enthusiast, Rosie decided to do a half-marathon this September and raised over €1,300 for MS Ireland. “I took that as a focal point and I’m glad I did it, although the training wasn’t easy, particularly when I had weeks where the fatigue was really bad and running in even the heat of our Irish summer would cause me to start seeing double again.”
While Rosie’s vision did go back to normal, she can struggle to move her right eye properly when she gets very tired.
Life now means pacing herself to stay as well as possible. “I would do very little at the weekend or in the evenings if I knew I had a very busy week coming up. It’s tough at the start, but you have to learn how best to conserve your energy, and that means sitting down and planning out my week and prioritising,” she says.
Initially, she did find it difficult to accept that she has MS. “There was probably a bit of denial going on. I was pushing myself with the half-marathon, but the only way you can get on with it is to accept it and learn ways of coping and dealing with it, so that you can still do the things you love.”
But what’s Rosie’s advice to anyone newly-diagnosed with MS? “There is no wrong or right way to react to how you’re feeling,” she says. “You go with it, whether it’s crying or laughing. You learn to navigate your way through the grieving process.”
MS Ireland is brilliant, she adds. “Even if you don’t feel like you want to get in touch with them initially, it’s worth it just to know that they are there if you ever want or need them. I’ve started attending a monthly MS meet-up group and find it great. We just sit and drink coffee and talk about mostly non-MS things, but the support is there if you need it too.
“Initially, I tried to read every book I could get my hands on about MS, but I had to stop that. My instinct is to be positive now. Like I said, you can’t let it define you. There are days when you worry, of course, but you can’t dwell on the what-ifs. I think I’ve accepted it, but sometimes I think, ‘God, this isn’t fair.’
“Still, I know that lots of people live with MS and every evening I make a point of thinking of all the things that I’m grateful for.”
>> MS facts
FREE BOOKLET
MS Ireland have a booklet entitled MS explained for those newly diagnosed. They suggest that you:
• Give yourself time to come to terms with the news• Inform yourself about MS at your own pace• Speak to a professional • Listen and talk to others• Use the MS Information Line 1850 233 233 (10 a.m.-2 p.m.Mon-Fri) • While drug treatments can help with symptom management, a healthy lifestyle is also beneficial. A balanced diet, appropriate exercise and keeping stress to a minimum can give your body and mind the best chance to deal with the symptoms.ABOUT MS
• Approximately 9,000 people and their families live with MS in Ireland.• The cause of MS is unknown. Even though it is considered an autoimmune disease, the reason the body triggers an attack on itself is unknown. Scientists believe there may be a genetic factor involved that increases a person’s risk of developing the disease. • It is a complicated and unpredictable condition that varies from person to person. Some people may be only mildly affected throughout their lives while, for others, progression happens more quickly. The type of MS a person has will only become obvious over time. FOUR CATEGORIES
There are four categories of MS:
1) Relapsing/remitting. 85% of people are first diagnosed with this category which involves flare-up then recovery.2) Secondary progressive. 50% who start off with relapsing/remitting MS may later develop this form of MS. It generally occurs 15-20 years after diagnosis.3) Primary progressive. About 10% experience persistent symptoms from the start that become progressively worse.4) Benign MS. This is associated with very occasional relapses, with good recovery in between, and minimal symptoms over many years.new study
A new report entitled The Societal Cost of MS, undertaken by MS Ireland and supported by Novartis drives home the need for added support for those affected by MS, Dr Chris McGuigan, Consultant Neurologist at St Vincent’s Hospital said at the launch of the report.
MORE
INFO ON MS
See www.ms-society.ie for more information and support. MS Ireland says that, while there are many other sources of information about MS, not all of them are accurate or helpful. They suggest visiting websites operated by MS societies to ensure accurate information.
This is a subscriber-only article
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