MS Awareness | Powercomm Supporting the MS Community

MS Awareness Series | Powercomm Supporting the MS Community

At Powercomm, we believe in creating a workplace where everyone feels supported, seen, and heard.

This May, in the lead-up to World MS Day on May 30th, we’re launching a special video series to raise awareness about Multiple Sclerosis (MS), a condition that affects one of our valued colleagues.

Grainne has kindly and courageously shared her personal journey on camera and via a blog to help break the stigma around MS and show what living with it day-to-day looks like.

Tell us about your diagnosis

My name is Grainne Rouleau, and I’m originally from Mayo but now live in Kildare. I am also the Office Manager & PA to the MD for Powercomm Group. I have Multiple Sclerosis, or MS, as it's commonly called. I was diagnosed with MS in December 2008. It was a shock to the system, but I was quite lucky as I was diagnosed after about two weeks, whilst others have waited months and years for a diagnosis, as it can be misdiagnosed a lot of the time. 

I can still picture this as if it were yesterday. I remember the doctor being there and telling me I had MS. All I could picture straight away was the MS Readathon that we used to do in school when we were kids, wheelchairs, and that's it. I thought I was going to end up in a wheelchair the next day, that I was going to leave the hospital wheeled out. You hear people saying, It's not a death sentence, it's true, it is not a death sentence. However, you get such a shock when you're told first. I thought if you had MS, it would mean you have a wheelchair. And that was it. That was your life. 

However, it's not like that at all. Now it is for some, and there are three different types of MS. I have the one they call remitting, relapsing. You relapse, and you go into remission, and so on. So at the moment, I'm mostly in remission. I get symptoms, but I haven't had a relapse in a long time. You do have symptoms that you have to live with every day and is has a major impact on your dally life, but it's not as scary. I wish I had known what I know now. If I could talk to myself back then on that day, I would have a lot to say. Your life isn't going to end. I've done more things now since I got it, than I would have planned beforehand. 

I always say a lightbulb went off in my head when I was diagnosed. I just suddenly thought, right, I need to use my legs while they still work as one day they might not work. And I haven't looked back since, I always had it in my head to take up hiking and so I did ! I've gone everywhere with it, So it's been a blessing in disguise, and it gave me the kick and the bum I needed to go and start something I’ve always wanted to do.

I've done a few big hikes. In 2015, I went to the summit of Kilimanjaro. Then in 2018, I climbed to Everest Base Camp & Kalapathar, and of course all over Ireland They were all absolutely amazing. I did them all for MS Ireland and to raise money for the charity & I jumped out of a plane one day also to raise money, I have done two in the previous years as well. One was around Northern Thailand, around Chiang Mai, and then that was 2011 and 2013. I did Romania up around Transylvania and the Carpathian Mountains. We have lovely hills and mountains in Ireland, but when you don't compare them to the mountains in other countries, they're pimples. I'd like to think I have another one big, long haul in me,

Advice for newly diagnosed patients

You will have to figure out workarounds, but it can, it can work with your life. I would say, though, talk to people, whether that's somebody who has it or somebody doesn't have it, or talk to people, get their experiences, that being a patient with MS is like a snowflake. No two people are the same. No two snowflakes are the same. You will not get two people in this world who have MS, who have the exact same symptoms all the time. It's just that it can be so different. It can vary. You can be sitting in a room with 100 people who have it, and I have done it, and you can all have a different list of symptoms, a different degree of the symptoms, different timeframes, and different timelines. 

Do your research, look into it, don't scaremonger yourself. Be careful when googling, just stick to a few trusted websites. For me, when I was diagnosed, I stuck with researching information on MS Ireland, and then I looked at the UK, because they were so close to us, and then Canada, because there's such a high rate per head of population.  So I was getting all my information there because, like anything, you will freak yourself out if you put your symptoms into Google.

 I say to anybody who has been newly diagnosed, take a breath. There's nothing that we can do to change it. You need to look at your symptoms and your life and see what little changes you can make in your life to make it better. For example, with me, it has been 17 years since I was diagnosed and I can't work full-time anymore. I work four days a week. I don't have it in me to do the five days, you know, because I have a family now as well. There's family life to consider, and we are just trying to get that balance. It's going to be different for everybody. There's no one-size-fits-all. There's no one size of symptoms or even treatment that fits all.

Stigma and symptoms 

There is a stigma around MS. At the moment, there are over 10,000 people in Ireland living with it. MS is normally diagnosed between the ages of 20 and 40, and I was in my early to mid-20s when I was diagnosed. It predominantly affects women more than men.  Like I said when I first was diagnosed, the first thing my head went to that day was, I'm going to be rolled out here in a wheelchair tomorrow. I'm 17 years diagnosed now. My legs are working fine. Now, in my case, and again, this is just for me, the majority of my symptoms are invisible symptoms. I'll get tongue-twisted a lot. I might get slurred speech. When I start talking. I know I talk fast anyway, but I might start talking like I've had a few drinks, and I haven't. It's, you know, cognitive stuff, brain fog, where I wouldn't know my own name if you asked me, or if you ask me my husband's and my daughter's names, I forget entirely for a few seconds. Fatigue is another one, and it's different from being tired. There are other symptoms where my eye socket will feel like someone is after punching me, and it's really bruised. But to look at it, it looks perfect, but it's just what I touch it. It's tender, that’s just one of many symptoms of optic neuritis, I will get pain in my bones easily like a full-on flu bone ach & in general I feel any sort of pain very easily For me, personally, I'd get a lot of invisible symptoms. It's just so unpredictable and this would turn into a thesis of 80,000 words of I kept going with listing the symptoms I get from time to time or those of others.

The symptoms, you don't know when you're going to get them. It can make it hard to plan things as well. How do I rest after this? You get to know your own body as well, if I know I can't do two things, two big things, back-to-back every week. I have to have one day that I have to rest, and you might be fine on that day. Still, it'll catch up with me, like if I exercise, as I've mentioned before, I love hiking and as many Saturdays as I can, and I know for me, that'll be an automatic migraine at the end of the day, and I will be zonked on Sunday. But I can't not go either because I can't, and I won't put my life on pause for it. It's just that I have to plan the rest on Sunday or the next day. Some days you are fatigued and exhausted from just nothing, it just hits you for no reason. It just goes to show that not everybody who has MS has a walker, stick, or a wheelchair, or a frame, and many do. And I don't know when the day is going to come to that with me, but at the moment, thankfully, it's not. But there is a lot of invisible symptoms, which as well, sometimes can make it hard for me to convince myself, or to believe myself, sometimes that I need to rest and that I do have something because I think, well, by the time I can, I can get up out of bed, walk and talk, I'm fine. And then you'll hit a wall, coupled with tiredness, or your brain will just be melted. I have a little eight-year-old who's always training somewhere to be going around, trying to meet somebody, for a walk, or do something for me. I can't let it stop my life. I can't just wake up and say I'm going to stay in bed. I have to, I want to, to keep going. There's still normal / regular life left to be live

Being Proud

I am very proud of myself. I'm also getting to that age, where I'm caring less about what other people think of me, and not in a bad way, but I'm just caring less about what they're thinking. It doesn't bother me whether somebody else is proud of me or not; I'm proud of myself. And yes, it is hard some days to get up out of bed and get showered and get dressed and do it all in a good mood, and get everybody out the door to work and to school on time, and then go to work and be this normal happy person then and work as well, where you might have a symptom that nobody can see you just try get on with that day, and you don't want to be the little martyr. I have this wrong with me today. 

Some days are completely normal, but most days, there's always something there. It doesn't always bother me. Sometimes it bothers me a lot. Sometimes you just put it around your head. It can be very mild, and you can get on with your day. But even if there's a day where I don't have a symptom, there isn't a day that goes by where I don't remember at some stage I have it, I know it sounds cheesy and corny, but yeah, I am proud of myself getting up every day, just living as normal life as I can, going to work. You know, having a normal family life, a normal work life, a normal social life, as well as much as I can. 

Support systems

It's so important to lean on your family and friends when you’re going through a difficult period. I also found that telling my employer really helped; they were so understanding and supportive. It was nice not having to hide symptoms when having a bad day and having the ability to be open and discuss the disease. I would encourage anyone to open up to their employer if they have MS. It can be a learning experience for everyone, but it really helps to have another person in your corner. I am so grateful for the support my family, friends, and employer have shown me over the years. 

You can support our cause by clicking on the link here: https://www.themay50k.ie/so/402/45