independent

Monday 18 June 2018

Living life in the moment

Rush woman, Katie St Lawrence, talks to John Manning about being diagnosed with MS at 22 and her message to young people with the condition

Katie St Lawrence with Matt Cooper when she appeared on his radio show, last week
Katie St Lawrence with Matt Cooper when she appeared on his radio show, last week

Katie St Lawrence has had to confront something that we all know but try not to think about - that all our lives are uncertain, unpredictable and that all that really matters is today.

Katie is living in the moment, two years after being diagnosed with MS at the age of just 22 and is dealing with her condition by opening herself up to the world in the hope that young people living with MS see that they are not alone.

While her diagnosis came at the age of 22, the Rush woman's first indication her life was changing happened a year earlier and it happened suddenly.

Katie explained: 'What happened to me was I woke up and I couldn't feel my leg. And I thought, that's strange - that's never happened before and it's no the kind of thing you expect to happen to a 21-year-old.

'It was a bank holiday weekend so there were no doctors around. I went to the chemist and they thought it was just my sciatic nerve so they gave me some tablets and cream and said it would be fine. But a couple of days later, I woke up and I couldn't feel my other leg so I knew then it wasn't my sciatic nerve. Over the next couple of days it spread back to the other leg so now my two legs were numb, my left arm was numb, my chest and my stomach was numb. The only thing that I could feel was my head, neck and right arm. I was petrified - I didn't know what was going on.'

What followed was a barrage of tests over the next year or so before finally, doctors confirmed the news that Katie hoped she would never hear, that she had MS (Multiple Sclerosis).

Katie remembered: 'That year without knowing what was wrong with me was petrifying. You are getting all these letters from the hospital and meanwhile, you are trying to keep a normal life going. I was back in remission and I still didn't know what had happened to me. People were asking me what went wrong and I couldn't tell them what it was.

'It was scary for my family. My grandfather had Motor Neurone Disease and my mother was petrified that it was something like that but the doctor was quickly able to tell her that it wasn't that.

'I have been relapse free now for two years which has been a fantastic. I've been on medication to slow its progress. Once I was diagnosed, I was immediately put on this medication and I had to learn to inject myself and stuff like that, which was absolutely petrifying. I was petrified of needles.

'It's grand now - it's very handy but the side effects can be brutal. You can get flu-like symptoms, depression, joint pain and a list a mile long. I suffer mainly with my joints. My hips are in shreds and my knees are in bits and I'm in constant pain with those.

Listen, I have great days and you can live a completely normal life with MS - you really can. But my life now is not the same as I was when I was 21.'

While Katie has not had a serious relapse like the one she experienced at 21, before she could even name the disease, she has symptoms to deal with on an ongoing basis.

She said: 'I can get incredibly fatigued. There are days when I'm like this and I'm grand and running around the place but there's other days when I'm going around like a zombie and I can't do the simplest task.

'I get migraines, especially in the heat - hot days are horrible for people with MS. I also get brain fog. I could be talking to you one minute and then I'd go blank. I get leg numbness and leg weakness and I have this tingling, pins and needles sensation in my legs which is part of the after effects of that first relapse.'

Despite all the challenges of the condition, Katie continued with her BSc degree and finished it last year and she firmly believes you can lead a full life with MS, albeit within a new set of parameters and while that is an important message to get out there, Katie firmly believes that the most important thing a newly-diagnosed young person with MS can hear is that they are not alone.

She explained: 'I was petrified, I was lonely and felt nobody could support me because they didn't understand. My friends were trying to be supportive but they didn't understand it and as much as I loved them for trying, they couldn't understand. I felt so lonely and I was scared and that's why I wanted to speak out. If some young person reads this interview or hears one of us talking on the radio, they can see that there is someone out there with MS that's their age.

'I want to be out there saying don't be ashamed, don't be alone, embrace it and get involved with the MS community.

'I got involved with MS Ireland and it was nice to have that support there. I knew that if I had an issue, I could just call the helpline or go to the centre and get advice. Recently I became part of the MS Ireland blogging team which has been fantastic.'

Katie added: 'I've got to meet other people with MS and that's been very important to me. I had never met anyone with MS and suddenly I was in a roomful of people going through the same thing as I was.'

She would advise anyone who has been diagnosed to seek support within the MS community in Ireland and globally. Katie said: 'I'd tell them they are not on their own - that's the most important message. There are other people out there - talk to your nurses and your doctors and they can put you in touch with people who can support you. Get in touch with MS Ireland straight away - they are such great people and they will help you through it and make you feel you are not so alone.'

There is a certain level of ignorance among the general population about the condition and that is another problem Katie wants to tackle. She said that she met people who sought to minimise her suffering because she was not exhibiting certain aspects of MS they associated with the condition.

Katie explained: 'There are no two MS cases alike and that's important to say. People will always compare you with other people. What really got me after I was diagnosed was that someone kept saying to my family that I didn't have the 'bad type' of MS, whatever that is.

'That really got to me. This person was not a doctor, she just thought she knew everything but of course, she didn't know what I was going through. I bit my tongue but I wanted to ask her, did she think I was injecting myself for the craic?'

Katie is realistic about her condition but determined to embrace her life, whatever it brings, and take it day by day.

She said: 'I would like to think I'm the same person but it has changed me in the sense I'm more compassionate to other people with medical conditions. I never understood what chronic pain was like but I really understand it now. I'll always have MS in my life. It sucks and it's never going away and the chances are it is going to get worse and I have to come to terms with that.

'I'm not ready to think about the future. I used to look forward a lot but now life is something I take day by day. But nobody can predict the future and neither can I and that's what I'm learning to accept. '

Now a passionate advocate for people with MS, the young woman who would have been scared stiff of public speaking just a couple of years ago has her own blog and is sitting down for newspaper and radio interviews on a regular basis. Her condition has given her drive she didn't know she had.

Katie said: 'When I was first diagnosed, I was ashamed of it but in the last few months I've realised there was nothing to be ashamed of. I did nothing to cause this so I'm leaning to embrace it and trying to raise awareness of MS because if we don't do that, how can we ever find a cure. Let people know you have it and let people know it's not the worst thing in the world. I want people to know about it and let's get money into the research and let's find a cure. I don't want another drug to slow down the symptoms, I want one to cure it - that's my dream now.'

Find out more at ms-society.ie and at Katie's own blog at KsVsMs.wordpress.com

Fingal Independent

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