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

  • Photo for article: MS and The 2019 Budget

    MS and The 2019 Budget

    Before Budget 2019, Helen Farrell shares her opinion on the financial challenges of living with MS and how the Irish State can truly support people. Our government ministers have an unenviable task in preparing our 2019 budget. Not only do they have to cover existing commitments but they also must plan for future contingencies and emergencies. Ireland has never been good at investing properly in the future and is bedevilled with transport, housing, education, social welfare and health systems that are full of historic quick-fixes and panicked responses to crises and outrages since the foundation of the State. Investing in proper preventative planning usually takes more resources and a longer-term view than ever seems achievable to our governments; to the despair of many.  It’s understandable that buying the approval of voters and ensuring a positive next election is very important for political parties; few go into politics to be in opposition. Our elected representatives have a duty to balance the health, housing, education, welfare, transport and environmental needs of Irish citizens with the money they have available, and to enhance people’s lives, not necessarily their pockets.  People with MS would love our politicians to sit up and notice that our neurological services are woefully underfunded and do not compare at all favourably with the rest of Europe, or indeed globally. MS is something that arrives in our lives uninvited and makes itself at home for life, often damaging our earning potential and costing us in so many ways across our lifespan. With access to good healthcare, medication, rehabilitation and support, life can continue for many of us in a productive way (albeit changed) but only if we receive the proper support. It is false economy to stint on these supports. The more support we have when living with MS, the more we can continue to remain engaged with life, earning and contributing financially and in voluntary ways and putting less of a financial burden on the State. It makes good financial sense to invest in MSer’s and conversely very poor judgement to limit services and supports. A severe MS-relapse or disease-course is far costlier for our healthcare, social welfare and other systems to deal with than the optimal situation of keeping a person with MS as healthy as they can be.  At a personal level I am still angry at the election promise reneged on in 2013, to give all people who hold the Long-Term Illness Card an automatic GP Visit Card. It would have made life much easier for us all with MS. Keep us well and we’ll be more productive, for longer.  MS Ireland’s pre-budget submission makes for sober reading (read here). The key asks of MS Ireland for Budget 2019 involve proper investment in neurology services, neurorehabilitation, community services and housing adaptation, as well as automatic entitlement to a GP Visit Card.  Although our Social Welfare services can provide good support for those of us who can’t work full-time or at all, more needs to be done to “make work pay”, although I personally dislike that phrase. There’s a whiff of the opinion that people who access Social Welfare are choosing not to work when they weigh up the financial “benefits” in favour of a life of State support.  Nothing could be further from the truth for most of us. We are trying to hang on with grim determination of any remnant of our former pre-MS working lives, reinventing ourselves, constantly adjusting and trying to outwit this disease.  Another area that MS Ireland would like addressed is the amount of income disregarded when applying for Medical Cards. In people with MS on lower incomes, the disregard should be far higher, due to identified higher costs of living with MS.  It is an exciting time in terms of new treatments emerging for MS. There have been quite a few new disease-modifying medications licensed in recent years that provide greater efficacy against MS, and the promise of more to come. New and innovative medications cost money and the government need to ring-fence spending to cover this for the future.  All in all, a lot for our government to consider. But short-term planning benefit nobody and makes no prudential sense in the long-run. What we need now is our government to focus on playing the long game; just like MS does with us.   

    Author: Helen Farrell - 08 Oct 2018

  • Photo for article: On Being a Woman with MS

    On Being a Woman with MS

    This week Rosie Farrell shares with us what it is like being a woman with MS. There is one representation of women in the media; thin, beautiful and definitely not disabled. In fact, as representations go, women living with a disability are invisible - a bit like the way our illness often is.  In my early 20s, I was career-driven and exercise obsessed. I wanted it all and I worked the crazy hours and exercised during the others in a bid to earn those labels. My idea of a work-life balance was to spend my spare hours on a cross-trainer. I wanted that perfect, strong female body we see all over social media. I analysed every inch of my flesh and no matter how much I exercised, how much the numbers kept reducing on the scales, I still hated how I looked. Why would I think otherwise? I didn’t grow up in a world that taught women to love themselves. Then I developed a disability to go with it and as MS slowly crept in to steal my mobility, exercise turned to something I did for how it made me feel and not for how it would make me look.  Recently, I put on my jeans and discovered they were too tight. I was ecstatic because I realised - after spending so long using a wheelchair and a stick and being unable to walk far, having watched my weight plummet and my muscles slowly waste away - the tight jeans meant that through all the physio and swimming, I finally had muscles again and that was something to celebrate. As I gained muscle, the numbers on the scales increased and before panic could set in, the scales found their way to the bin and my confidence as a woman soared. As women, all too often we are defined by how we look, and it took me getting MS for me to stop defining myself that way too. Now, I look in the mirror at my untoned body and I hug myself because this body has been through a lot and it deserves my love. I deserve my love. I fight chronic pain and fluctuating mobility levels and yet it’s still MY body. It’s mine to be proud of and to celebrate and to get frustrated with. It is not society’s to label. Exercise is sold to us on the grounds of how many calories we can expect to burn in a session. Fashion is sold to us as clothing only those with the most toned bodies will look good in. And disability aids are sold to us as something only older people need. At first when I started using mobility aids, I felt like I no longer fitted in anywhere. Where was I represented? Because I now used a stick, did that mean I was no longer stylish? As a woman with MS, I’ve had to challenge a lot of society’s labels. And as I settle into life as a wife and I move into a new chapter, those labels expand. I would be ignoring the elephant in the room not to touch upon the topic of having children. That’s something that will only be possible for me if my pain and spasticity could one day be managed on a minimal amount of medication. I’d be lying if I said it doesn’t worry me but it’s not something I’m physically in a place to challenge, and that’s not to say I won’t ever be.  I’m learning that because I’m a woman with MS, a woman with a disability, I am also still a woman with a career, I’m still sexy and beautiful despite the mobility aids and the lack of high heels. I am still a valuable human being if I end up not being able to have children. I still have a voice that deserves to be heard. In fact, as women, we are far more than the many labels society pins on us. And as a woman with MS, I’m finally learning to value me. And a woman who believes in herself is an unstoppable force. That’s a label I’m happy with. Rosie Farrell is a sub-editor and designer with Irish Country Living and the Irish Farmers Journal. She blogs at www.sherunswithms.wordpress.com

    Author: Rosie Farrell - 27 Sep 2018

  • 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

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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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