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

  • Photo for article: MS & Money

    MS & Money

    In our ‘MS & Money' series this week’s blog is from Willeke Van Eeckhoutte. She looks at money, employment and early retirement. Having MS means that unpredictability is part of your life.  Like Emma wrote in her first piece about MS and money, “Having MS can affect our ability to earn. Not earning can cause a financial crisis and a financial crisis can affect our peace of mind causing great stress and emotional wobbles.” On my day of diagnosis, my neurologist at Beaumont Hospital, said, “From now on you should change your lifestyle, and work.” At first, changing my lifestyle was not an option. I never realised, though, that on a physical level, my body had already decided for me. Stress and anxiety flood your mind, and immediately you think, “Will I have to give up my job, and if so, for how long?”  Retiring from work isn’t an easy question because you don’t want to become a liability to your colleagues or yourself, so it brings a lot of ‘What ifs…” and “I don’t want to lose my…” In fact, it took me a good while trying to find a definitive answer to that question.  At some stage, the level of fatigue, trigeminal neuralgia, and other symptoms became a hurdle too many, and even sitting down in front of a computer for an hour in the office had me crying of facial and eye pain. Again, my body had decided for me even though my mind didn’t want to give up any freedom working had given me.  Being on a disability allowance or invalidity pension teaches you how to be creative with money.  Absolutely, you want to remain financially independent for as long as possible. There are many things to consider, i.e. will you be able to live on the level of income for example, which social welfare benefits you might avail of, can you still do some work or what is the outcome of your occupational doctor’s exams, etc. The prospect of having to rely on a weekly social welfare income is daunting. So many things depend on that social welfare payment because life in Ireland is expensive, and money seems to fly out the front door faster than it is coming in. Bills and rent require rescheduling, and you need to learn to squeeze as much money out of what is left.  You can sometimes swap Debenhams for Penney’s or the weekly take away for a monthly one and instead lose weight with healthier food. Try and cut credit cards in two or phone a money advice line that can help you sort out outstanding bills, credit cards or bank loans. If you feel that giving up work is the only option left, do some research beforehand on the Citizens Information website where you can find a checklist for people with long-term illness or disabilities, be aware though that some benefits are means tested while others are not. If you need a hand filling in paperwork related to benefits, you can find a Citizen Information Centre here.  Being retired has been the blessing my MS needed. I still have lots of trouble with fatigue despite using several treatment options and trigeminal neuralgia remains an ungentle reminder of my illness. What has been a blessing is that whenever I now feel I need to withdraw to rest because of stabbing facial pain or fatigue, I can do so without an employer telling me to go back to work. It sounds so simple, but it has changed life for the better. Financially, life is a challenge. For example, buying luxurious coats, shoes, and handbags, or buying an expensive new laptop or jetting off somewhere far, far away, now those things belong in the past.  But, life is about adaptation. And as time goes on, you begin to realise that maybe you should have retired sooner. It didn't turn me into a wealthy, female version of Richard Branson, but it has given me another chance of starting over. Yes, with less money in the bank, but emotionally stronger and richer than I ever thought possible. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 20 Apr 2017

  • Photo for article: Clinics, Friendship and What Ifs?

    Clinics, Friendship and What Ifs?

    'This weeks blog is from Lucinda Russell. She takes us on a journey of clinics, friendship and what ifs? Read on for a fresh take on the day.' In the early days of my diagnosis with Multiple Sclerosis in 2011, everything about my neurology  appointments in Beaumont Hospital caused me anxiety – from getting lost en-route and then kicking myself for driving  through the city, instead of the motorway, out of fear of  accidentally driving into the Dublin Port Tunnel and orientating myself within the hospital, to the cost of the  car-parking.  Now, the MRI and follow up appointments are just another date in the diary. Until the day arrives. It’s here. I’m early. Without  thought, I make my way to Clinic B. Neurology and the Fracture Clinic share a registration desk. It seems  like an odd match, brains and broken bones. Still, it’s a people-watchers dream. The logistics of it  all is like an awkward choreography, as patients hobble, or are wheeled about with various strappings and supports, making their way to somewhere else. Despite the busyness of the place, there is a comforting sense of  calm. The linoleum on the floor is remarkably shiny  and the space is bright and airy.  There is a lot to focus on, to distract  myself about why I’m here. I’m experiencing a  period of really good health and the appointment almost  seems unnecessary. I don’t have time for this and I don’t have time to be sick. I am called before my scheduled time. I abandon the blog post that I had started to  tap into my phone. I am greeted by a neurologist whom I haven’t met previously. No student doctors shadowing this time. Like all of the neurology team that I have encountered to date, this woman is warm and  friendly, compassionate. She is thorough in her  physical examination of me, testing my strength and reflexes. It feels like I am as strong as I ever  was. She is concerned that I haven’t had any recent  blood tests and I feel silly saying that I forgotten to  organise these in advance of our meeting - it is in my best  interest after all.  An award for ‘Patient Taking Charge’, I will not win. The neurologist talks me  tells through the results of my recent MRI scan. No new significant lesions, but some minor ones. ‘How  minor is minor’?, I ask. She excuses herself and  says that she will speak with the senior neurologist.  The minutes seem long now. My head spins. ‘Is there something she doesn’t want  to tell me? News that she would prefer her senior delivered'?  I think of My Lovely Friend who was diagnosed with breast cancer very recently.  She’s  the same age as me, also with a young family and largely  managing on her own. She’s a stunner. The  type of girl who turned the heads of the handsome guys in college. I recall our phone call when she tells me her  news and the plans for the next few months. Chemotherapy, surgery and radiation.She tells me that  she has bought a wig. I can’t remember what I said  to her, but I know that I cursed a lot. I think about  her children and I think of mine. The uncomfortable  'what if'? questions they ask that I'd prefer not  answer. I worry about how we will cope if I could no  longer work to financially support them. I have  thoughts of people I know with advanced MS and what an unforgiving disease this can be. I wonder if I could  still feel feminine if I looked, moved, or sounded  differently. I think about My Lovely Friend’s upcoming surgery and how invasive it will be on her womanliness. A strong willed lady, she has a plan,  will roll her sleeves up and get through this. I wish I lived closer, so I could offer her more practical support.  The neurologist returns and the news is  good. Really good. The minor lesions on my scan are old, in the sense that they were visible on last  year’s scan. There are no new lesions. Those  that are there have shrunk. The drugs are doing what  they are intended to do, although it's not the case for  other people. It's as good as it can be. I can  feel the relief in my body as she completes the paperwork  and refers me to haematology for blood tests. My needle aversion hasn’t lessened and I need to lie  down. The blood flows easily. The sun shines. Today is a good day.

    Author: Lucina Russell - 13 Apr 2017

  • Photo for article: Hope

    Hope

    ‘This week Helen Farrell examines how the years of living with MS have made an impact on her hopes for the future’ This week a brand new MS medication, Ocrevus (ocrelizumab), was approved by the Federal Drugs Authority (FDA)in the United States for both primary progressive (PPMS) and relapsing (RRMS) forms of MS. It has major effects on both progression and relapses and described as a “real game changer” by the CEO of the US MS Society. Up until now, people with PPMS have been empty-handed in their fight against the progression of their type of MS. It will take a few months at least to be licensed in the EU and Ireland but where the FDA goes, inevitably the EU will follow, and it will follow fast. Simply put, in the face of MS it costs the healthcare system too much to allow progression to run rampant.  MS has a way of making you focus inwardly on your body and mind in quite a negative way. When you combine dealing with pains and aches, limitations and often crushing fatigue, adaptations and medications, with a future that includes a progressive illness, it can drain your reserves of hope at times. When we feel helpless in the face of something, hope can struggle.  Friends and family probably sent you articles about Ocrevus during the week, eager to pass on little nuggets of hope to us MS’ers. People like to share hope and optimism and sometimes hopefulness is a difficult thing to hear when we might not feel so hopeful about our future. When I was diagnosed 19 years ago I kept hearing “in 10 years there will be a cure the way things are going”. Ten years came and went and that damned cure is still as elusive as ever, but we certainly have slightly more effective medications available to us now.  19-year post-disagnosis was another major deadline in my subconscious, although I hardly acknowledged it until I wrote the first draft of this blog last week. In 1998 the neurologist told me that normally 10-15 years after diagnosis most people moved to the progressive form and got worse, so I was sure that 19 years in I would be in a very bad way. After I submitted the draft I felt it wasn’t quite right and it took a week to work out just what was wrong with it. I realised with a shock that I have never  properly allowed myself to hope for the future since I was diagnosed back in 1998. Certainly I have made plenty of plans and set myself challenges and achieved most of them; I went back to college for a post-grad qualification, got married to a wonderful man, had a son, learned music for the first time, appeared on national television despite being extremely self-conscious, learned how to crochet, gave lectures. It wasn’t that I avoided planning but when I examined how I felt about hope for the future, I realised that I never, ever expected to reach 19 years post-diagnosis in this shape; walking, working part-time, having “no evidence of disease activity” on my MRI’s – the very best you can hope for with 19 years of MS under my belt. I’m not saying I’m grand and I know that I can’t write for everyone’s experience. Many years of relapses have left plenty of damage and symptoms but I’m so much better than I thought I would be at this point of my life. It has been a strange week. Hearing about Ocrevus being approved is momentous enough for most of us with MS and better medications are on their way, bringing a bit of hope to many of us. Suddenly realising that I can maybe allow some longer-term hope creep back into my life feels like I’ve turned some kind of corner in my life. That is about as good as you get with MS and I’m seizing it eagerly with both hands.  National Multiple Sclerosis Society. 2017. FDA Approves Ocrevus™ (ocrelizumab) for People with Primary Progressive MS or Relapsing MS -- First Disease-Modifying Therapy for Primary Progressive MS. [ONLINE] Available at: http://www.nationalmssociety.org/About-the-Society/News/FDA-Approves-Ocrevus. [Accessed 2 April 2017].

    Author: Helen Farrell - 06 Apr 2017

  • Photo for article: MS Money Matters: Keeping Up with the Joneses

    MS Money Matters: Keeping Up with the Joneses

    This week in our MS Money Matters series - Trevis Gleason feels a little left behind by the new economic boom  It’s been nearly 5 years since my wife Caryn (and our ‘puppy’, Sadie) landed on this island and made it our home. We have been changed much by Ireland in general and by West Kerry specifically. The pace of existence, it must be said, has been much more conducive to living a good life; MS or not. But it’s not just that things are slower; our lives seem to eddy over obstacles here rather than cascade in exaggerated, white-water rapids. “Aw, sure… It’ll be grand.” has helped Caryn and I get through some difficult physical episodes as well as a few financial difficulties. Everyone here seemed to live that way when we first arrived. But the new ‘boom’ economy has me feeling set apart again, just like my multiple sclerosis sometimes can. I’m not longing for the times of austerity budgets and cuts to life-line social welfare programs. Please don’t get me wrong. Neither am I ‘The Yank’ trying to live some “The Quiet Man” existence; shaking my fist at motorcars as they speed down our bohereen (only to find it’s a cul-de-sac). But I do miss the days when everyone was sticking to a budget the way many disabled people must. The first papers we picked up in the shops when we moved reported what €180,000 might land you in the housing market around the country. Last weekend’s paper had the same story, but with a €620,000 price tag. There are a lot more “16”s and “17”s on number plates then there were 10's and 11's when we moved here. And the vehicles adorning those new plates are much bigger and more expensive then we used to see rambling the bumpy west Kerry roads. “Black Friday” promotions and even the red and green of Christmas while Halloween candy is still on the shelves – not to mention the weekend fly-and-buy shopping trips to New York and Boston that harken back to the days prior to economic collapse – have sneaked back into Irish life… and people living with disabilities (and the related extra expenses) are still searching for two pennies to rub together. It was a little bit easier when everyone around us was wearing last seasons (or last year’s) fashion and dinning in on ‘the spuds’ rather than couscous or at the latest sushi-fusion hot spot in the posh neighborhoods. A drop-foot, stick or crutch, a walking frame or scooter, a wheelchair or accessible van can already tend to make us feel “other”, now it appears that the financial fortunes (no pun intended) of those who are not hampered by this or other chronic conditions are pushing me out of the main stream, into the slow, still waters and away from the fun. I’ve never liked the term ‘fixed income’. Let’s face it, unless you have side-gigs or work with commissions or incentive bonuses, we all tend to make the same wage week-in and week-out. But many of us on the lower levels of that ‘fixed’ scale who struggle to keep up at work, have had to step back a bit – or completely away – felt like we were back at the table when everyone was cobbling together a couple of punts just to get by until the next pay cheque. Please don’t take this as culchie begrudgery of the big city folks. Few people are being handed large sums; they are working very hard and paying high prices in order to live in this new-boom economy.  I also know that many hammered away with little rest or reward during the bust and are deserving of a few of the nicer things in life for the effort. What I’m getting at is that there was some communal comfort when that flow of life’s river changed course a little bit and I was once again in the mainstream with other paddlers rather than relegated to the slow waters and watching larger and larger yachts passing me by. Wishing you and your family the best of health. Cheers Trevis  Trevis’ new book, Chef Interrupted, is in the shops now. You can also follow him via Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 30 Mar 2017

  • 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

All MS and Me Blog Articles

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.

Latest News

More news

What's hot

Job_opps

We're Hiring

If you would like to be part of our team, take a look at our current job opportunities.

Find out more

Events Calendar

» Our next Event

25 April 2017: Ongoing Group physiotherapist led exercise classes for people with MS

View all events

eNEWS SIGNUP

If you'd like to receive e-news updates from The Society please enter your email address below. If you want to know more about how we manage personal data then please see our privacy policy.

My local MSI

Map of MS Ireland's service areas South Mid West West Midlands South East North East North West North Dublin City and Fingal South West Dublin and Kildare South East Dublin and Wicklow