MS & Me: A Community Blog for People Living with MS

  • Photo for article: Love, Family and Grand Plans

    Love, Family and Grand Plans

    This week we have a guest blogger, Michelle Henley from Cork. She has kindly shared her story with us. We’re calling it 'Love, Family and Grand Plans'. Share your comments and the story with others.  This time two years ago life was great, I had returned to education. I had my life together and had begun training as a hairdresser, had two beautiful kids and a beautiful home for my little family. Okay, so being a single mother was never in the Grand Plan, but we were happy. Life was great. How things can change in the space of a few weeks…. On the 14th of February 2015 just before my 25th birthday my whole world came crashing down around me. It was on this day that my GP said four words that changed my life forever, “Michelle, it's Multiple Sclerosis”. How did it feel to hear those words? I have no idea, I was numb. Unable to feel anything. Honestly, I had no idea what multiple sclerosis even was but I just knew it wasn’t good. Looking back now I can’t remember the day properly I was in such a haze. I remember my GP trying to explain the diagnosis to me in simple terms and try to put a positive spin on it. Sitting in my car trying to make sense of it all, crying until there were no more tears left to cry. Stumbling in home to tell my family the news I had received, watching my father’s face crumble in heartbreak, looking into my mother’s eyes as she struggled to stop herself from collapsing in devastation, watching the worry spread across my aunt's face, looking at my two-year-old son playing on the floor, oblivious to what was going on and watching my seven-year-old daughter outside playing happily with her friends. At that point I had no understanding of the diagnosis and worry set in. What about my kids? Will I be able to look after them? Will we no longer be the three musketeers? Will I be in a wheelchair? How bad is this really? All of these questions in my head and nobody to answer them.  In the days that followed I tried my best to hold it together, my children were my reason to get up each morning and for them I had no choice but to continue as I always had. I would get up and get through my day, get them ready for school/childminder, go to college, come home and do the same routine as every other day. By day I tried to suppress how I felt, it was the only way I could get through. I would block it out and hoped it would go away. I was so scared of what this meant for us and how we would cope. But by night, when the kids were safely tucked up in bed, I would fall apart.  A few weeks later I woke up with the whole left-hand side of my body numb/tingly as if someone had drawn a line down the middle of my body. My right side was unaffected but the left side completely dead. Panic set in and I had no idea of what to do, what was wrong with me? Is this MS? Is this numbness the start of my deterioration? I called my GP and he sent me straight to the Mercy University Hospital, I was admitted and ended up staying for a week. Again, another hazy period of time, a blur of blood tests, lumbar punctures, IV steroids, prodding and poking, eyes exams, MRI scans, x-rays, occupational therapy, physiotherapy, teams of doctors, student doctors, endless questionnaires, sympathetic looks, big words and phrases I didn’t understand. Relapse? Symptoms? Lesions? Exacerbations? Gilenya? Tecfidera? I remember feeling the most alone and scared I had ever felt in my life. I couldn’t even have visitors as the hospital was closed to outsiders. Being away from my children absolutely broke my heart, I had never been away from them for so long. I just spent a week lying there feeling empty, lonely and broken. Looking back now I have one massive positive from that week and that is the neurology team that I am under. Dr O’Toole and my MS nurse Niamh have been a tower of support when I have needed them. Dr O’Toole came to my bedside, sat with me and answered my questions as best she could. She provided me with so much vital information and introduced me to the wonderful organisation that is MS Ireland. I did start to feel a little more positive after this conversation, although perhaps that could have been more to do with the fact that she told me I could go home the following day, more than me being more understanding of the diagnosis! My mother collected me from hospital and I couldn’t get into the car quick enough to see my beautiful babies sitting in the back. One thing I will never forget is the smiles that beamed from ear to ear on both their faces when they saw me. In the days that followed I was over the moon to be home with my children and family again. The kids didn’t leave me out of their sight in case I would disappear again- I still can’t so much as have a shower in peace! They are still checking up on me but I don’t mind, I wouldn’t have it any other way. I did suffer from severe migraines and back pain for a few weeks after but slowly they started to become less regular until they stopped completely and life stated slowly to return to normal. I started to pull out the information leaflets and booklets I’d been given and set upon the task of understating and managing this disease. I started trawling through the MS Ireland website and have never looked back. All the information I needed was right there, I even got to read other people’s stories. Eventually I plucked up the courage to pick up the phone and get in touch with a woman from MS Ireland called Patricia Lucey. That was the single best phone call I have ever made. She has been a rock for me to stand on, always there to talk and, more importantly, to listen. She has made several house calls to me and has even introduced me to meditation to help me manage my anxiety. Without the support of Patricia and MS Ireland I don’t know where I would be today or what version of myself I would be. I know not everyone is as lucky as I am and do suffer a lot more than I do, I am merely trying to encourage fellow MS’ers to try grab the positive and run with it. There will be days when that seems the impossible but there is always a positive. You just have to find it…. This is not the end of her story. Michelle is going to jump out of a plane to raise money for the work of MS Ireland. To donate and read more about Michelle visit www.justgiving.com/fundraising/Michelle-Hanley3  

    Author: Michelle Hanley - 23 Mar 2017

  • Photo for article: My MS Fears

    My MS Fears

    This week Declan Groeger shares his MS 'Fears' My MS fears have changed over time and yet they have stayed the same. You see I never really worried about what MS would do to me but how it would affect my family.  My first fear, post diagnosis, concerned my ability to continue working; the ability to provide for my family and continue in the hunter/gatherer role. Would my MS progress rapidly, rob me of my independence, confine me to a wheelchair and make me a burden on my family. I was 31 years old with two small children and I just didn’t know the answers and I was worried.  I worried whether either of my two children would have MS; that fear is still with me. As you know more women are diagnosed with MS and I have two daughters. There is a hereditary factor with MS and I have a maternal uncle who lives with MS; the odds were stacking against my two girls. I have twenty nieces and nephews and many of them have children of their own and I have a grandson. I sometimes wonder whether any of them will have MS. Would I be able to continue with my fair share of household duties or would Jean have to carry a disproportionate load, whilst maintaining her nursing career? We found our level and Jean never complained but I did feel ‘guilty’ for not doing enough. Jean’s proportion has grown steadily over the years as mine has decreased but this is no longer a cause of worry; it is reality. I had a number of other concerns but most of those only became relevant as an event approached; Birthday Parties, First Communions, Confirmations, Graduations, Holidays. Would I be an active participant or merely an observer? I did play an active part in all of these events. As my MS progressed and my precious girls matured into young women I worried if I would I be able to walk them up the aisle if they decided to marry? The girls did decide to marry and with a combination of grit, determination, pure stubbornness and a massive amount of positivity from the wedding guests I managed to fulfil my role as ‘Father of the Bride’ and walked up the aisle with both girls. When I heard that I was to become a grandad I worried whether I would be able to play with our grandson Jack? Would I be able to hold and cuddle him? The good news is that this fear/worry was very short lived and Jack will be loved as much, if not more, than any grandson in history. Our playtime together will be different but every bit as enjoyable. Multiple Sclerosis (MS) is different for each and every one of us and my one piece of advice to anyone diagnosed with MS would be not to be consumed by fear and worry. A diagnosis with MS is life-changing not life ending (although it may feel like that at the time). Don't forget to check out able2access.wordpress.com

    Author: Declan Groeger - 09 Mar 2017

  • Photo for article: My MS Hope

    My MS Hope

    This week Willeke Van Eeckhoutte shares her MS 'Hopes' The day of your diagnosis will more than likely be burned on your brain, no matter how long ago it was. Later, the day you realise that the word MS didn’t even cross your lips in the last 24 hours, is worth an ovation.  Eventually, the day you exchange worry for hope and defeat for independence from your chronic illness is worth a week-long celebration. This sounds easy to achieve if you’re living with mild relapsing/remitting MS, where you have defined periods of reduced disease activity. On the other hand, if you live with progressive MS, I can only imagine that hope can sometimes seem like a distant ray of sunshine that will be gone the next time you blink your eyes. It would be wrong to forget or marginalise anyone’s experiences, so, especially when hope is a verb used by everyone with MS. To hope, you need to set realistic expectations. Accept MS as is, and build up hope from thereon in.  To hope, you need motivation, determination and the purpose to stop self-defeating yourself. Some people find hope among their family and friends, in travelling, books or in religion, or simply in their own management of their illness and knowing that at least today, they want to live, and live well. To hope is to be convinced that life with MS is worth living. It is knowing that despite being stuck at home or in a wheelchair every day, it does not stop you from looking forward to a new day, with new challenges while acknowledging past mistakes. The many hospital visits, medication, mobility aids, etc. are not proof that you are different from others; they are proof that today, you use those tools to create a better tomorrow. And in that empowering moment, the erosion of negativity in your life stops, and hope is found.  From a personal point of view, I saw hope smashed on several occasions throughout my life. Each time it happened, it required having to grasp it by its tail and by gob, pray to never let go again.  Two and a half years after moving to Ireland for example, I was still full of hope of finding a nice Irish lad with red cheeks to settle down somewhere on the west coast. After a few months of peculiar symptoms that seemed like science fiction, my consultant at Beaumont Hospital, said, “You have MS.” Hope, dreams and the reverie about that nice Irish lad smashed into a seemingly impregnable brick wall. On hearing those three words, hope had all but gone. I soon realised, though, that pain is fierce, but so is hope. No matter how sick I was or how much I wanted to curl up and never leave my bed again, people cannot survive without feeling hopeful. I owed it to myself to hit the reset button to try to make something new from what was left of my life. Oddly enough, I found hope and therefore strength where I least expected it, namely in advocating, and how can I forget, in my mum’s brilliant cups of coffee and continuous jokes. I didn’t meet an Irish lad with red cheeks, but I feel happier than I used to be before being diagnosed with MS. In the end, feeling hopeful has a silver lining as well; it is always a new opportunity to make things better and it can be achieved by so many different things, actions and people. An Irish television-mammy recently said, “You can’t have courage unless you are afraid” and I wholeheartedly agree.  So, get your happy on, and let’s be fiercely hopeful together because if you have hope, you have everything. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 02 Mar 2017

  • Photo for article: My Passion Piece - Music Festivals

    My Passion Piece - Music Festivals

    This week Niamh McCarron writes about MS, music festivals, camping, muddy fields and shares some festival survival tips! One of the things I most enjoy doing is getting away for a few days, forgetting all about work, MS and daily life. Luckily every few months we are in a position to head off for a week; in-between we squeeze in the odd over-nighter. I’m very aware that I might not always be well enough to hop in the car or on a plane so for now I am making the most of it! This piece isn’t meant to be about MS, not today, but in reality, I have to consider it when I am making plans to escape for a while. I need to know that the places we visit are suitable and factor that in. So, the fact that one of the things I love to do most is to attend music festivals in our tent, might come as a surprise to people.  In fact, it’s down to MS Ireland that I discovered music festivals are my “thing”. A few years ago, Vantastival was announced as a charity partner of MS Ireland, and it popped up on my Facebook feed. As always, I was nosey and had a snoop around their website and ended up buying tickets for the weekend. Little did I realise I’d be bitten by the festival bug! That first weekend trip was an eye-opener - both good and bad. Overall, I thoroughly enjoyed it and even spent a happy hour shaking the MS Ireland collection bucket. Everyone was very friendly and welcoming, and we quickly settled into our weekend lodgings. I am a wimp when it comes to camping. I don’t like to take any chances, so I bring duvets and pillows and loads of clothes- I don’t like being cold and tents get very cold at night.  I hadn’t really allowed for the lack of sleep, and lack of toilets. These are two things that I really need to cope with my MS symptoms, so I wasn’t feeling too great by the middle of day two. It took me a few days to recover from the tiredness when I got home, and I realised I’d need to be better prepared in the future. Since then, we’ve been back to Vantastival and tried out Electric Picnic last year. I am always a bit nervous of going to something new- just in case it isn’t MS friendly- but I’ve been pleasantly surprised each time by the accommodations made, ensuring that I have a great weekend and feel well looked after. Electric Picnic in particular stands out- they have a specific camping area for people with disabilities, with staff on the gate at all times. These guys go out of their way to lend a hand, putting up tents and making sure you’re comfortable. They have a fridge for meds and keep an eye on everyone, without it feeling obtrusive. The facilities at each stage or tent are great too- there are platforms for wheelchairs and seating for people who can’t stand for long. Each festival is a new experience and so far we’ve enjoyed every one. Our camping expectations have moved on- chances are we’re going to get soaked, covered in dirt and possibly sunburnt, all in the same day. We’ll end up stinking and longing for a hot shower and a bed more than two-inches off the ground. There will be little or no sleep late into the night, so I’ll aim for a cat nap during the afternoon. I also got around the lack of toilet by buying my own!  But none of that will matter this summer when we’re enjoying a few drinks, listening to the music and eating chips out of a van. We won’t have phones or laptops or meetings or deadlines. My tickets are booked and there is a big X on my calendar – sometimes the count-down is as enjoyable as the event itself!

    Author: Niamh McCarron - 23 Feb 2017

  • Photo for article: MS and Me: Money Part 2

    MS and Me: Money Part 2

    Last month Emma Rogan started a conversation about having MS and money. What impact did being diagnosed with MS have on her finances and outlook? This week she’s full on with her own financial planning, revealing the steps that are making a difference, financially speaking, to her life.  Writing this piece and reflecting on the topic has given me the opportunity to really get REAL. Sitting in the hospital on D-Day after I got the news, one of the prevailing thoughts I had was can I still work? Earn money? Would I ever achieve my ambitions now I had MS? The turmoil and the chaos of those few minutes left me with long-term concerns about staying financially independent. All in the space of a few minutes! By getting organised, realistic about my current situation and respecting money for what it can do for me, I’m already seeing positive changes.  Stock take: First things first, I needed to take stock to get an accurate picture of my situation. There isn’t any point fudging the figures, the plan has to start with the reality. But to actually get to that point, there must be integrity. Maths don’t lie. But I delude myself. From this I can then set out your future truth – what I really want in life and plan to that.  Forecast: It is still early enough in the year to forecast, to look ahead in the year and really get a perspective on what my income and outgoings look like. Do I expect my car insurance to go up (again!), what about my home insurance or health care? I know when I was relying on benefits it was even harder to focus on the reality but it was more important. Adjustment: I can plan and forecast and analyse but all this will fall if the plan doesn’t meet my needs. Any adjustment in spending to be reduced in line with our value systems. For me that means that my daily coffee at 7.30am before I get to work will stay but buying a new top or jeans goes way down the list. Education is important here- read articles on personal finance and understand your debt and what is costing you’re the most. Now that I’ve taken stock, looked at the year ahead and made some adjustments, I’m using the Toshi Finance app to keep track and monitor the progress against the Plan. If you prefer pen and paper, do it. Keep track in a way that suits you, decide on a frequency, a methodology. If the reality is not fitting with the plan go back to the plan and make sure your values are in there and ask why it isn’t working. Just hear it and see what you can do with it.  There will be surprises – things break cars, showers-  people celebrate engagements, birth, getting married; bills get crazy; my toddler calls Australia… these or something like these will happen. WILL happen. When they do adjust and re-plan. Don’t stop but do make ‘unexpected’ part of the plan. Reward planning and if you find it tough going make sure you celebrate the wins. Ideally a non-financially devastating reward would be great but be prepared to pay for a treat as well! Make being open part of your plan to let the people in your life know you’re making different financial decisions. Some people find it difficult to say ‘I don’t have the money’. But that is a circumstance and in no way reflects who you are or your value as a person. A fundamental aspect of good business is financial planning and we should feel equally empowered to do the same for our personal lives. Keep talking about it. Remember deliberate earning, saving and spending are very different to being ‘mean’ which is another Irish ‘no-no’. Don’t let a fear of being labelled mean have you spend to disprove it. I’ve learned this the hard way.  It is a relationship – so there will be ups and downs, wins and losses, arguments (with yourself!). But over time there will be a profound and consistent change that will bring you what you choose.  MS and Me: Money Part 1 Join Emma on Twitter and check out her blog www.republicofemma.wordpress.com     

    Author: Emma Rogan - 16 Feb 2017

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The Multiple Sclerosis Society would like to say 'Thank You' to Trevis Gleason for all his help and TEVA for supporting MS & Me: A Community Blog for People Living with MS.

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