What it’s like when mum gets multiple sclerosis
Diagnosed with the debilitating condition when they were only in their thirties, three women tell Stephanie Bell what it’s like depending on your children to care for you.
They are the mums who have had to cope with their worlds spinning out of their control. Struck down in their prime by the cruel condition multiple sclerosis, today three mums talk about how they are finding the strength to fight back against an illness which has robbed them of so much of their independence.
Multiple sclerosis strikes twice as many women as men and Northern Ireland has one of the highest rates in the world.
It is usually in their 20s and 30s, at a time when most women are settling into their careers and starting their own families, that they are hit by this devastating neurological disorder.
Not only does it often mean an end to their working life but, as our mums reveal, it can leave them so helpless some days that they cannot even care for their own children.
MS is a disorder of the central nervous system. Symptoms can attack at random, resulting in problems with mobility and balance, eyesight, memory and thinking, bladder control and extreme fatigue. As well as coping with the terrible pain and impact on their everyday family lives, sufferers also have to contend with a shocking lack of understanding by people outside of the home.
Hurtful remarks, strange looks and even being mistaken for being drunk is part of the appalling attitude which people with the condition encounter from strangers.
Patricia Gordon, director of the MS Society NI, says: “Because it’s poorly understood, living with MS can turn a simple shopping trip or social event into an ordeal — where strange looks and hurtful remarks can all be part of daily life.”
Three local mums who have shown remarkable courage in fighting back against the condition share their stories of the harsh reality of living with multiple sclerosis.
‘When I can’t cope, my son becomes my legs’
Pauline Ward (44), from Derriaghy, is a midwife and single mum to Connla (11) and was diagnosed with relapsing MS in 2004. She says:
I was living in Germany in 2004 when I developed back pain and at first it was thought I had a prolapsed disc. Then one day I couldn’t lift my foot to put it on the accelerator of the car.
Doctors thought I had a trapped nerve and I had surgery and everything was fine for a month and then I started trailing my foot.
I then asked to see a neurologist and five days later I was told it was MS.
I was relieved to know what was wrong but it was still a shock and very frightening.
I didn’t want to know too much about it then as I knew some people became dependent on wheelchairs and I didn’t want to think about that.
I suppose I didn’t want to scare myself anymore by reading up on it.
Two years ago I was told that my condition had become ‘secondary progressive’ which meant it had worsened and has left me depending on crutches to get about.
I try to live as normal a life as possible and have been lucky to have been able to keep my job on as a midwife in the ante-natal unit of the Royal Jubilee Maternity Hospital, even though it is a struggle and usually leaves me exhausted.
The hardest part for me is that Connla has to do things which normally an 11-year-old shouldn’t have to deal with, like carrying in my shopping, cutting the grass and taking the clothes out of the tumble dryer, things that I can’t manage.
There are some days when I find the stairs difficult to manage or walking a major hurdle and then Connla is my legs.
It upsets me that I can’t kick a football around with him and he has asked me a couple of times why I can’t be normal like other mummies.
It is very frustrating for both of us and Connla gets angry with the MS.
I try to keep as positive an attitude as I can — you just have to.”
‘There are days when I paint on my happy face’
Linda Watson (39), a former hairdresser from Bangor, was diagnosed with relapsing MS in 2009. She is married to Darren (40), a bus driver, and has two children, Chloe (14) and Jamie (16). She says:
Some days I feel like screaming but I’ll always fight back against MS. I had been experiencing fatigue, dizziness, mobility and speech problems for a number of years but always put it down to the pressures of working in a busy hairdressing salon.
I didn’t know much about MS before I was diagnosed so it never really crossed my mind. Then I temporarily lost the sight in my left eye which was terrifying. I was hospitalised and after a number of tests I was eventually diagnosed.
I refused to accept it initially. I didn’t think it could happen to me. I tried to find another reason for my symptoms. My husband Darren was really supportive and helped me to come to terms with it and learn more about it. I’ve found it difficult because many people don’t understand MS. They think because you look well, that you can’t be feeling unwell and that can be frustrating.
Every single day I experience pain and fatigue. It is constant and it would be very easy to feel down about it and give up but I have my kids and lovely husband to keep me going. They help me to fight back by helping me to stay positive and living my life to the full.
Having to give up my career was terrible as my job was my world. At 37 you don’t expect to be finishing work for good — you expect to have another 30 years at least in you.
As a mum it’s the simple things like not being able to make breakfast or get the kids’ uniforms ready before they go to school which is hard. My husband is brilliant but it is frustrating not being able to care for your kids the way you want to.
I am in a wheelchair most of the time although I will use a walking aid around the house. I try to keep smiling. There are many days when my happy face is just painted on as I try not to let how I’m feeling show. There are a lot of people out there who are a lot worse off than me and so I try to make the best of it. There is no cure for MS yet but that’s not an excuse. I have no choice; I just have to keep fighting back.”
‘Some days making a cup of tea is too much’
Madeline McBride (42), a former childminder, was diagnosed with MS in 2004. She lost a sister to MS and has a brother and another sister with the condition. She and her husband Raymond (43), a production worker, have five children, Caoimhe (19), Baolan (18), Roisin (16), Ellen (14) and Eoin (10). She says:
I had been experiencing a range of symptoms including numbness in my face, fatigue, pain and mobility problems. My husband and I would go out walking and I kept tripping up and losing co-ordination. I wasn’t sure why it was happening. My sister Clare was diagnosed with MS at the age of 16 so it was always in the background but I really wasn’t convinced that I had MS.
I visited my doctor but there was no conclusive diagnosis and I just tried to carry on as normal. With five children, we have a busy house and I just didn’t have the time to allow these suspicious symptoms to hold me back.
However, the numbness and fatigue continued. I had a lot of pain and eventually my doctor advised me to go to see a neurologist, who conducted a number of tests.
In many ways my diagnosis was frighteningly quick. I really wasn’t expecting it to be MS and it was a big shock for my husband Raymond, because I’d tried to hide my pain and no one really knew the extent of it.
Sadly my sister died six months after my diagnosis and another brother and sister have since been diagnosed. I’m very independent and I want to be strong for myself and my family so I just take each day at a time.
Living with MS can be so unpredictable and frustrating. Some days I just forget I can’t do all the things I want to. Simply making a cup of tea can be too much and I just have to admit I need more help than I used to. I’m very lucky that my husband Raymond and all my children are very supportive and help out around the house. It was tough giving my job up and financially it put a lot of pressure on us.
I fight back against my MS by maintaining a positive attitude and trying to maintain as much normality as I can. At the end of the day I’m still a mum so I try to do the housework and everything an average mum does.
Living with MS can be difficult but I won’t let it get the better of me. It’s all about being positive and never giving up. My dad Joe, husband Raymond and children Ellen, Roisin and Eoin and nephew Oisin are taking part in the Belfast City Marathon to raise funds for the MS Society NI.”
the prejudices sufferers face...
- A disturbing report by the MS Society has revealed that many people are “narrow minded” and “ignorant” in their attitude towards those with disability.
- More than 2,000 people were surveyed for the report ‘Fighting Back — ordinary people battling the everyday effects of MS’.
- It revealed that as many as one in five (21%) think disabled people need to accept they cannot have the same opportunities in life as non-disabled people and one in four (24%) believe disabled people often exaggerate the extent of their physical limitations.
- A separate poll of people with MS showed that as many as 42% feel that people often don’t consider them as equal.
- Over half (53%) said their symptoms have been mistaken for drunkenness, while three quarters (76%) have experienced someone questioning the fact they have MS because they ‘looked well’.