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

  • Photo for article:  On Being a Man Living with MS

    On Being a Man Living with MS

    This week Declan Groeger shares with us what it is like being a man living with MS I was diagnosed with Multiple Sclerosis (MS) in 1988. Married with two small children, a mortgage and an overdraft. The day the doctor said “You have MS”, my life changed forever. At that time MS had no known cause, no treatment and no cure. Any plans I had for the future were left swinging in the wind. The cause is still unknown, a cure has still not been found but there are many treatment options available now and more in the pipeline.  How did I feel on hearing those unforgettable words? It was 30 years ago and memories dim with time, and MS, but I do remember being overcome with emotions, crying and wondering what path my illness would take. I did take heart from the fact that a maternal uncle had been living with MS for more than 20 years and he was doing fine.  Did I feel inadequate after the diagnosis? Certainly not in the immediate aftermath, and probably not in the early years while I was feeling good. I felt so good that I sought a second opinion after ten years. This unfortunately confirmed my diagnosis. Deep down I knew I’d been grasping at straws- the signs and symptoms had become more apparent and I knew the downward slide had begun. I started medicating at this point.   I never saw myself in the classic ‘hunter gatherer’ role but I knew that as time passed any role I would, or could, play in our family life would be seriously affected. Jean and I discussed it and agreed that we couldn’t rely on my ability to remain in gainful employment and bring in a steady income and from then on Jean donned the mantle of bread-winner. I was no longer ‘the man of the house’, although I remained in full-time employment for a further 22 years. MS had relegated me to the second division. That was the first knock to my manliness and many more knocks were to follow over the years.  I was afraid of being perceived as lazy as long as my illness remained invisible. That’s not to say I wanted everyone to know I had MS. It was my private torment and I didn’t know how to handle its invisibility. All of the people who mattered to me had learned to live with, and accept, my constraints a long time before I did. I slowly came to realise that I was the only one who looked at me the way I looked at me. Jean never made me feel inadequate or lazy, that was all down to me. My share of the housework was to look after the garden but I always felt I should be doing more. One of my earliest pieces of Assistive Technology was a ride-on lawn mower obviously needed to cut the grass but also to move tools etc. around. Every job took much longer for me, used twice as much energy and in 2014 I threw in the towel on that particular activity.  I was never a big drinker but I did enjoy having a few pints. I never had a ‘local’ as such but even that ‘not drinking much’ suffered from MS; I was no longer comfortable going to a pub. The prospect of wobbling my way to the bar or toilet became too much of a struggle and I was very much aware of people watching and silently passing judgment. I’m not drunk I have MS. Men of my age group are not great at discussing and sharing our thoughts and feelings and I am no different. I kept my feelings of inadequacy under tight control. There was no reason to burden anyone else; suck it up and get on with life. I would urge other men living with MS not to suffer in silence but to seek out help and talk about it.  Useful links AWARE  GROW Irish Men’s Sheds

    Author: Declan Groeger - 20 Sep 2018

  • Photo for article: MS, Skilled and Unemployed

    MS, Skilled and Unemployed

    This week Teresa McShane tells us about the financial and professional implications of having MS and discovers it’s an emotional journey. Like any long-term illness or disability, MS can have far reaching implications and can literally turn one’s world upside-down. Obviously, all cases are different and vary in severity but in many cases, not only can one’s physical limitations be seriously challenged but also one’s mental, emotional and, more than likely, financial ones. The career aspirations you had may have to be radically overhauled; the lifestyle you had imagined for yourself and your family revised. And ultimately, in order to keep as well as you can, it may mean giving up work at some stage.   I had always loved working; it gave me a sense of purpose and belonging. I worked hard from the age of 18 and despite a diagnosis of MS when I was 23, I carried on in employment, through ups and downs, until I was nearly 40. I felt like a worthy member of society who was contributing.  It allowed me to live a semi-normal life. Go shopping, go on holiday or treat myself and not feel guilty. This very sense of value I put on myself boosted my self-esteem and mental wellbeing.   Like many of my friends with MS that I have spoken to, I was determined to keep going and not be beaten by this inconvenient illness. We forged on like ‘valiant soldiers’ but really, we should have been minding ourselves and listening to our bodies. We dragged ourselves out of those relapses, so we could keep going… until the next one. We were determined to live a ‘normal’ life but found ourselves in a vicious circle of working too hard, exhaustion and sick leave, until finally we copped ourselves on and realised something had to give - or we didn’t and our bodies called time. And that is exactly what happened. So now that I was no longer working, who was I?  What was my purpose?  I was a leech, a drain on finances, I needed minding, looking after and being supported financially. That mortgage that we took out together when we were both employed now fell on the head of my husband. The monthly outgoings were still the same, but the income was reduced. And when the recession hit and things were oh, so tough, he was the only one who could drag us out of it. All the while I felt like an impotent bystander, a ‘Sitting Duck’!  And so began the downward spiral. That mental wellbeing and sense of value I was talking about started to deteriorate - eroded by guilt and feelings of inadequacy. Slowly at first because when I first had to give up work, I assumed I would just take a break and then get right back in the ring. I didn’t realise that one year… two years… 10 years on I would still be outside the workforce and merely a social welfare statistic. But here I was, and that takes its toll on anyone’s emotional and mental resilience. I know I am lucky. When I ceased working I went on Disability and was transferred to the Invalidity Pension the following year. A weekly payment that allowed me NOT to work. This sounds fantastic, you might think - being paid without having to work. Nice one!  And for some people, this is the answer to their prayers. But definitely not for all. Many people of my age (48) with MS, who have worked hard to build their careers and have found themselves on Invalidity Pension yearn to go back to work. For starters, the weekly payment doesn’t come close to the full-time weekly wage they were used to and/or needed. But more importantly, they don’t want to be dependent on the State. They don’t want to be dependent on anyone.  But common sense must prevail and accepting the way it is doesn’t have to be defeatist. I have been given a valuable commodity… time. Time to take time, to rest when I need to and time to spend valuable moments with my other ‘valiant soldiers!

    Author: Teresa McShane - 13 Sep 2018

  • Photo for article: Palliative Care

    Palliative Care

    This week AnonMS shares with us their refreshing and honest view on palliative care. Palliative care is all about improving the quality of life of patients and AnonMS tells us how we can make sure we have what we want when we need it and provided by people we trust. I will admit to being a little daunted when I was given this topic for my next piece. Palliative care is generally the bogeyman of medical input. It conjures up images of quiet rooms, suppressed sobs and reaching the end of a long and difficult road. I know that's how I viewed it initially, before I began to understand the wider impact it can have. While palliative care is invaluable at the "end of life" stage, it has many far-reaching advantages that are not always apparent at first glance. Palliative care is particularly appropriate for anyone with a neurological condition. Unfortunately, these conditions are chronic, generally incurable, and often progressive. Because of this, an introduction to palliative care is actually appropriate from the time the diagnosis is given right up until the final stages. While it is understandable that when you've just been told you have MS, palliative care is not something you want to hear in the next sentence, but it is a topic that should be discussed with your healthcare team as soon as you feel comfortable. Palliative care can actually be a source of great relief for people. Palliative care teams are extremely specialised and are committed to providing high-quality and individualised care to everyone they see. Because palliative care can be offered at any stage along the journey with MS, there can be choices available in terms of rehabilitation, treatment options, and discussions around how you would like your care to be delivered. Palliative care teams have an enormous role to play regarding pain management, and this can often be the first reason that they are asked to review someone.  Palliative care teams can make the tough conversations more routine. These conversations allow relevant people to know early on what your medical preferences are, where you would like to be treated and who you would like to be involved in making decisions down the road. Because palliative care teams look at you, the whole person, they can be involved with topics as wide ranging as: symptom management, dealing with stress and anxiety, advanced-care planning, psychosocial issues and even your spiritual needs, as appropriate. People can feel a weight has been lifted once they know that someone else is aware of their wishes for the future. At the end of the day, it comes down to the person's choices around their quality of life. And their personal understanding of when "enough is enough" for them. Thinking about the future can be pretty scary but thinking about the potential future if people don't know your preferences can be scarier still, even without the added issues of MS. Stepping back from all of the complexities of MS, what if you were to be hit by a bus tomorrow? Who knows your wishes in terms of medical treatments? Who knows what you feel your quality of life is at this moment and how much you're willing (or not willing) to fight to get that back? What if you feel the meaning in your life is dependent on you being able to do X or Y but nobody else is aware of this? We've all likely had those conversations with family and friends with the words "if I ended up like X, just let me go", but how many of us have actually formally documented those instructions somewhere? My perspective of palliative care has completely changed over the years. I now view it as highly specialised, individually centred care where the focus is solely on the person's wants and wishes. In my opinion, palliative care puts the person back in control, helping them to make complex decisions by giving them a thorough understanding of their options. And, with a disease as unpredictable as MS, I can only see this as a good thing. “Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual”. World Health Organisation MS and Palliative Care: MS Trust (UK) https://www.mstrust.org.uk/a-z/palliative-care  

    Author: AnonMS - 06 Sep 2018

  • Photo for article: The National Conference

    The National Conference

    This week Niamh McCarron shares with us her thoughts on the upcoming MS Ireland National Conference. Isn’t it funny how certain events or a time of year can seem like a fresh start? For many, it’s New Year’s Eve, but for me September has always been the month of “new beginnings”. It probably comes from having teachers in the family growing up. After a long summer of lazing around the house, we were all back into routine once the schools reopened. Even now, many years past my schooldays, I look forward to September as a time to reset, to set new goals and to have a wee think about how the year has progressed so far. So, it is timely that MS Ireland hold their annual conference each September. The conference welcomes people with MS, their families and healthcare professionals to come together to learn about MS, treatments and research. I have been going to the conference for a few years and it’s an event I would be disappointed to miss. This year the conference is being held in Athlone, in the Radisson Hotel on Saturday, 22nd September. This year’s conference is around the theme of “Living well with MS” - I love this topic and think it is such a positive message to promote, that we can all live well alongside our illness.  We often see the negative side of MS portrayed in the media, which isn’t always the day-to-day experience for many of us. The notion that living well, whatever that means to individual people, doesn’t have to stop with a MS diagnosis is so encouraging to me. I will be taking the opportunity of going to this year’s conference to refocus on my own wellbeing. Last year I wrote a blog post after the conference, summarising the talks and information we received. While writing this piece, I had a look back over the post from last year and the notes I’d taken at the time. I took a few moments to reflect on what I learned last year, to admit that many of my good intentions have slipped since then and I made a few fresh resolutions for the next 12 months. No doubt, some of them will have slipped off my radar long before next year, but for now, I am feeling pleased with myself! You can read about last year’s conference here If you haven’t been to a MS Ireland conference before, I really recommend going along. The guest speakers are engaging and I enjoy listening to their experiences and about future developments in their work. It is exciting to hear about how the diagnosis, management and treatment of MS has advanced in our lifetime and where it might go in the future. The workshop sessions are smaller and sometimes allow attendees to contribute their own experiences to the discussion, if they want to. The conference gives us an opportunity to meet other people with MS – it is not often we outnumber the people without it! Attendees can come alone or bring a friend, either way you’ll be warmly welcomed. The price per person is €20 and lunch is included. If you want to find out more or register to attend, please click here I hope to see you there! Confirmed speakers: Professor Gavin Giovanonni, Professor of Neurology Centre: Centre for Neuroscience and Trauma. Research Groups: Neuroimmunology. Barts and The London School of Medicine and Dentistry. Dr. Jens Bansi, Exercise Scientist; PhD., Rehabilitationszentrum Valens, Switzerland. Dr. Sabina Brennan, Trinity Brain Health and ADAPT, TCD. Workshops: Irish Hospice Foundation, Planning for the future.  Genomics Ireland, Dr. Kate O’Brien identifying specific patterns in genes in people with MS so as to develop new diagnosis tools, treatments, and better our understanding of disease progression.

    Author: Niamh McCarron - 31 Aug 2018

  • Photo for article: Back to School

    Back to School

    This week, Teresa McShane talks about the challenges of getting ready for back to school. No sooner have the schools broken up for the summer than we are being catapulted into the maelstrom of ‘back to school’ stress . Ads emblazoned on bus shelters about deals on copy books, pencils and uniforms. Posts on Facebook ask, ‘Are You Ready for the New School Year…?’.  Buy One, Get one Half Price!’.  Get 15% off your school books THIS WEEK ONLY!  Kit your Kid out for a Fiver at www….etc. By my tone so far, you might have gathered that if anyone is looking here for tips on how to ride this wave of chaos, I am not the person to ask.  With three weeks to go before D-day, I am in official ‘melt-down’! I am a mother of two boys, one of whom is returning to secondary but the other is just going into 1st year.  Luckily, the school they go to is fairly on the ball and we received their booklists swiftly in July with Child A’s school report, a bill for our ‘Voluntary Contributions’ and a note of ‘Dates for the Diary’. No excuse for complacency now.  I seize the moment accordingly and head straight for the local bookshop, feeling organised and in control.  Three hours later I get the text informing me that my books are ready for collection.  I am on a roll.  Unfortunately, I am told, as I hand over my credit card, that they don’t have book ‘x’ or book ‘y’ until next week and they are ‘unlikely to have book ‘z’ until the first week of August’.  So, before I even start, I am already knocked back.  Don’t even get me started on the uniform!  “What do you mean, he’s just too small for anything in stock?”  In any case, the ticks I was hoping to apply deftly to my ‘To Do’ list have been halted in their tracks and I am already starting to unravel. At least, I think, I did get their bus tickets organised.  But even that wasn’t straightforward and though I was reeeally concentrating, somehow I managed to double-order!  Why do all instructions these days seem to be cryptic? Or, is it just me? I wonder if my own mother struggled in this way, to get us organised for the start of the new school year?  Did she experience that creeping tingle of stress in the back of her neck at the thought of the task at hand? Apparently, it has always been a nightmare.  But how lucky we are now that we no longer have to make that annual crusade to Oliver Plunkett Street.  And how novel that many schools now adopt a ‘Book Rental Scheme’ enabling students to borrow their books for a modest fee.  No ordering online ‘back in our day’, I’ll have you know!  So, what am I doing wrong? I made my list fairly early on in the summer and I really thought that this year I would be on top of things: -          Empty school bags (and lunchboxes) -          Drop booklists to shop -          Buy copies/pens/etc. -          Buy uniforms/shoes -          Sort bus tickets Now, at a glance, that seems fairly straightforward! Maybe it was when I figured (naively), “it’s only June. I have loads of time…!’ that things went pear-shaped?  Or, maybe it was because there was CAMP… VISITORS… MORE CAMP… MORE VISITORS… HOLIDAYS… LOCAL FESTIVAL…! Or, maybe it’s the ‘in-your-face’ marketing that didn’t exist in our mum’s day, putting us under pressure.  It places that ticking time bomb in our brains that the proverbial will hit the fan (or at least cost us much more) IF WE DON’T GET ORGANISED RIGHT NOW!!  So, maybe, just maybe, it isn’t actually my fault at all? With a renewed sense of perspective and calm, I remind myself that I have nothing to fear.  The visitors are gone, the festival is over and the camps are shut up for the season.  With THREE WHOLE WEEKS left at my disposal I can purchase the school uniform items I need when available and collect books x, y and z, at my leisure.   Roll on 28th August! (However, I do take responsibility for the mouldy sandwich left in the lunchbox!)

    Author: Teresa McShane - 23 Aug 2018

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