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Two brave women tell us about living with Multiple Sclerosis

Would you help someone you saw staggering in the street ... or dismiss them as drunk? Stephanie Bell meets two brave young Belfast women who want to tell us what it's really like to have this illness

Published 29/09/2015

Greta, who is originally from Lithuania, has lived in Belfast since 2007. She also has relapsing remitting MS and has really struggled to come to terms with her diagnosis
Greta, who is originally from Lithuania, has lived in Belfast since 2007. She also has relapsing remitting MS and has really struggled to come to terms with her diagnosis
Positive attitude: Tina McGonagle would love to return to work

They may look like perfectly healthy young women, but even something as simple to the rest of us as walking down the street can be a major challenge - not to mention a huge embarrassment.

Diagnosed with Multiple Sclerosis, the everyday has become a struggle for Belfast women Tina McGonagle and Greta Gurklyte but, sadly, society is making life even more difficult for these brave young women.

A general lack of understanding of disability by the public has meant that the symptoms of their condition - falling down unexpectedly, staggering, or simply needing to sit down in the middle of a busy shop - can make them the victims of derision from complete strangers.

Being humiliated in public is an aspect of their illness which, understandably, both women have found hard to accept, so they are talking today to try and raise awareness - and they hope their stories will give people a better understanding of the struggles many people face.

It is an issue that also carries into the workplace, as many people with MS can - and want - to work, but face a series of social and physical barriers to getting and holding a job. Four out of five people with MS become unemployed within 10 years of diagnosis.

And Northern Ireland has one of the highest rates of MS in the world, with roughly 4,500 people living with the condition.

MS attacks at random and many of the symptoms are invisible to others. Most people are diagnosed in their 20s or 30s.

MS can get steadily worse, or remain unpredictable - one day you can be fine, the next you might lose your sight or be unable to move.

It is a complex condition which has many symptoms, including impaired vision problems and balance; dizziness, fatigue, bladder problems, stiffness and spasms.

It can also affect memory and thinking, and impact on emotions. There is no cure for MS, but there are different ways to manage it, including drug treatments to prevent relapses or treat symptoms, physiotherapy, diet and exercise and complementary and alternative therapies.

The MS Society is a national charity fighting to improve treatment and care in a bid to help people with MS take control of their lives and this has proven a lifeline for Tina and Greta.

'I read everything I could find online and that was a mistake... I thought I'd end up in a wheelchair'

Greta, who is originally from Lithuania, has lived in Belfast since 2007. She also has relapsing remitting MS and has really struggled to come to terms with her diagnosis.

She feels so strongly about the public's lack of understanding, that she hopes to actively promote awareness and has just been elected to the MS Society Council.

Greta came to Northern Ireland in 2007 to visit a friend, after graduating with a Law degree. She had planned to return to Lithuania to do a Masters Degree but loved life here so much she decided to stay.

She had hoped to practice family law in Lithuania but gave up that dream to be here.

Having worked in the health service as a secretary, two years after arriving in Belfast Greta was diagnosed with MS - a blow so shattering she is still receiving counselling to try and come to terms with it. She says:

Looking back, it probably started when I was 18 as I remember at school my body feeling numb like it was frozen - but I put it down to exam stress.

"Then in 2008 my left leg went numb and I went to my GP who did tests.

"He said my sensors weren't working and referred me to a neurologist. I just seemed to go downhill from there.

"When I was walking I had no balance and was all over the place and people thought I was drunk.

"I remember one day trying to go across a zebra crossing and thinking I am not going to make it, and a man in a car stopped and asked if I needed help. He could see I was struggling. I actually thought I had a brain tumour."

That day Greta ended up in the Royal Victoria Hospital when she was admitted for an MRI scan, which showed inflammation on her brain. It was February 2009 when she finally received her diagnosis. Ironically, she was feeling fine at the time and the news came as a major shock.

She knew nothing about MS and, like most people, turned to Google to try and learn more.

"I Googled everything and read everything - and that was the worst thing I could have done - as I thought I was going to end up in a wheelchair.

"My mobility was bad and I was limping really badly and I got really angry about it.

"I also felt annoyed because I felt people should know what was wrong when they saw me staggering.

"I had to sit down one day while shopping in Marks & Spencer and I remember the looks I got from other shoppers who must have thought I was just lazy as I was such a young woman sitting there.

"I think it is only in the past year I have started to come to terms with it with the help of counselling.

"I went to the MS Society and was offered physiotherapy and spoke to a counsellor, who told me that my negative attitude was not going to help me. He has really helped me to face the fact that I have a disability, which is something I couldn't accept."

Simple things like having to change her hair dressers because her regular one had a salon upstairs hit her hard.

She also had to change jobs within the health service where she works as a secretary.

Today, routine is her friend and she lives for Tuesdays when she visits the MS Society offices in Belfast for counselling, physio and complimentary therapies.

Greta adds: "My passion has become access for disabled people and creating awareness so that the public have a better understanding of people with disability.

"With my law background I am passionate about people's rights and I think everyone needs to realise that you don't have to be in a wheelchair to be disabled.

"I think most people are just so busy in their own lives they don't notice - and even I wouldn't have noticed before - if someone was struggling to get down the street or in a shop. I now notice more people with walking difficulties and I really want to help create awareness."

'It was heartbreaking, but it was also a relief to know what was wrong with me'

Tina (33), who is mum to Emma (11), had experienced sensitivity to light and pains in her muscles for a number of years, before starting to think something serious might be wrong. In fact, she struggled with her symptoms for 10 years before being diagnosed two years ago. Coming to terms with the news was shattering and having to give up her job as a pharmacy assistant was another blow. Today, she keeps herself busy running a number of support groups online and locally through the MS Society. She says:

Looking back, I can remember having lots of strange aches and pains for many years, which were probably the beginning of my MS.

"I had pain in my neck and shoulders and fatigue all of the time.

"During my pregnancy with my daughter Emma, I had very severe back pain and numbness in my legs. I went to my GP, but he understandably dismissed it as pregnancy related.

"Even when the symptoms persisted, my GP always put it down to something else - sciatica, a slipped disc and even depression. It was quite embarrassing, because I felt as though I was always complaining and I worried that the GP thought I was exaggerating - I felt like a hypochondriac."

One morning, Tina woke up to find that her foot was numb. She went to work but within two hours she had lost all feeling up to her thigh on her left leg. Her manager realised that something was very wrong and sent her back to her GP, who suspected a slipped disc and referred her for a scan.

Incredibly, she waited 18 months for the scan, but at this stage had already started to suspect herself that she could have MS.

"Working in a pharmacy, I had access to medical sites online and I did some research, which was quite naughty, as I would always advise people not to self-diagnose, so I suspected I had MS. When I got the scan and, of course, it showed I didn't have a slipped disc, I told the consultant I believed I had MS and he got me referred to the neurology department."

Following two MRI scans, a lumbar puncture and more frightening bouts of numbness and pain, Tina was diagnosed with multiple sclerosis.

She says: "It was heart-breaking news, but in many ways an immense relief to finally know what was wrong.

"My consultant said I had lesions on my brain and that I'd probably had the condition for years, which finally explained why I'd been having all those strange symptoms.

"My first question was what type did I have, as I knew there was relapsing and progressive MS. I wanted to be sure I wouldn't end up in a wheelchair and it was a big relief to be told that I had relapsing MS."

With medication, her symptoms have been largely brought under control and since her diagnosis she has suffered just two major relapses.

Most days, though, she still struggles with fatigue and numbness in her limbs. One of the worst symptoms is loss of feeling in her legs, which can happen out of the blue and cause her to fall over.

She says she has lost count of the times she has fallen over in public and realised people thought she was drunk.

Tina explains: "I fall over all the time and my arms go numb, too. I remember one day going to pick my daughter up at primary school and I stumbled out of the car. I just knew people were thinking 'She is drinking and driving and picking her daughter up'."

Also tough for Tina was the loss of her job, which she just couldn't manage anymore because of her condition.

She says: "I have worked every day of my life since I left school at 16 and it has been a big adjustment not being able to go to work, although I would love to get back to work again.

"Some mornings, I get up feeling fine and then all of a sudden the fatigue sets in. I keep myself busy running different support groups for patients and carers on Facebook, and I also help run a monthly parents' group for the MS Society.

"MS is a disability and some people don't like to call it a disability, but it is, and that means we are covered by the Disability Act and other legislation which puts the onus on employers to make reasonable adjustments in the workplace - things like raising or lowering a desk to accommodate a wheelchair and even providing a disability parking space. There are things that can be done to keep people in their job, and I don't think enough people realise that."

While MS has had a profound effect on the quality of her life, Tina still has a remarkably positive attitude to living with her condition.

She adds: "I'm okay at the moment. I'm fine. It's not going to kill me.

"Yes, maybe over time I might progress, but at the minute, I'm okay and my attitude is that it could be a lot worse."

Tina now runs three support groups on Facebook for people on different types of treatment for MS throughout Ireland and the UK - Tysabri, Lemtrada and Tecfidera.

Belfast Telegraph

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