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

  • Photo for article: MS and My Money Series, Part 1

    MS and My Money Series, Part 1

    This week is the first piece in our new MS and My Money series. Emma Rogan talks money- how she relates to it, how it affects her life and why this is a topic we’ll be covering during the coming year.  Firstly, I am not a financial advisor and nothing that is contained in this piece is anything other than my own experiences and understanding of my situation.  I used to think of money as a commodity, something I do or don’t have. Money is the reward for efforts at work and gets used for the things we need and want. In this world, it is often given credit for having a life of its own with claims of ‘ it slips through my fingers’, ‘it goes out faster than it comes in’ and ‘…sure I can’t keep a penny!’ These phrases show how easily we detach- money is seen as completely separate to the person. I think we need to look at money differently and consider that I have a relationship with money. And as with any relationship there are things that we do consciously and unconsciously get us the results we see - whether we want them or not!  Chatting with friends, we’ve asked ourselves why it is we’ve had the same relationship experiences with different partners? It’s because we keep doing the same things time and time again; the lover might change but our behaviours remain constant and we don’t change. So it is with money. Where we come from, our family of origin and all the beliefs and values we grew up with influence our current relationship with money. What do I really think about money? Is it a figure in my mind that I fleetingly consider at payday not thinking of it until there’s very little in my bank account? Saver or a spender? Am I a little blasé about it? Am I envious of people who are ‘good with money’, have disdain for wealthy people? Believe wealth to equal something corrupt? Do I put the same effort into it as I would a long-term, valuable friendship?   Pause and consider how you feel about talking about money? It is not something we ‘do’ in Ireland- for many it’s vulgar or too personal (which reinforces the theory that money is more than a commodity) but this also prevents us getting rid of the taboo around the issue. Most importantly, this avoidance prevents us talking with our partner, close friend or family members about it. And talking about it is a really useful way to gain greater understanding of our relationship with it and if we need, to get help.  Once we understand the factors in our own personal relationship with money we can begin to see the behaviour patterns that give rise to the financial circumstances we’re in. And our relationship with money relates to it at a number of points – earning it, receiving it, retaining it, growing it and spending it. At any of these contact points we are affected by the relationship we have with money.  So what has this got to do with being diagnosed with MS, my biggest life-changing event? Doesn’t this money talk apply to everyone? Yes it does. But while financial health and physical and mental health are not interdependent they can be strongly correlated. 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. And these can then go on to create a cycle of cause and effect from which we can’t see a way out. So, without understanding our relationship with money it can be difficult to get to grips with being able to make real change when we go through challenges we didn’t see coming. And money won’t solve everything but it does allow for choice and security- things that are which are fundamental to progressing just that bit more easily. Circumstances change, dreams don’t. When life gets in between us and our dreams it’s not time to stop. It’s time to feel, plan, hope and most importantly, act. Your money is a great place to start.  Emma will be following up this article in the coming weeks with some practical ways she is improving her relationship with money. What’s your attitude to money and how has having MS affected your relationship with it? Comment and share on Facebook.  Join Emma on Twitter and check out her blog www.republicofemma.wordpress.com   

    Author: Emma Rogan - 19 Jan 2017

  • Photo for article: My MS Journey

    My MS Journey

    This week Declan Groeger shares his MS journey. Have you ever embarked on a journey only to find that the starting point was not where you thought it was or started a mystery trip where the route and length of the journey are unknown?  My MS journey officially started in 1988 but I believe it really started in 1983. I was involved in an accident that year and sometime after the accident I experienced a most excruciating headache for a number of days. It was after this incident that symptoms became apparent. I know that there is no definite proof that a traumatic experience can trigger MS but I know of many people who do believe and I certainly find it a credible theory. When my traumatic incident was coupled with a familial connection, my Uncle Michael Crowley also lives with MS, the writing was definitely on the wall; bad graffiti more than writing. At the time of my diagnosis MRI scanners were not available and the diagnostic procedure seemed very basic. In any event I sought a 2nd opinion after 10 years and MS was confirmed. By this time an MRI scan was available as were a small number of treatment options. There was still no cause and no cure but at least treatments had become available.  I have been living with MS for 28 years, my Uncle Michael for 50+, and I can safely say that it is no bed of roses. My MS story is not unlike so many other MS stories and a phrase that I find very helpful goes like this; when you can’t change the outcome, change the journey. If I suffer a breakdown on a car journey I call roadside assistance, AA, RIAC or whoever, and I use the same criteria on my MS Journey. My first call is to Jean and then depending on the severity of the problem I contact the medical profession. The end of my story is already written but the intervening chapters are works in progress, they are changeable. Is there a moral in my MS story? Yes there is! Don’t be afraid to ask for help; timely asking for help has the ability to alter the journey. I didn’t recognise it at the time but asking for help is crucial. I would urge everyone to consider the possibility of help in advance of it being forced upon you by circumstances. I am the central character in my MS story but my family and friends make it a more interesting tale; I was tempted to say ‘more enjoyable’ but there is very little 'enjoyable' with MS. The only good things to come out of my MS story are that I am stronger than I thought but more importantly my family and friends are the real super heroes, they are my supporting cast; they support me through thick and thin.  I like to think that my MS life has had more ups than downs and the ups have lasted longer than the downs. How is your story unfolding? Declan Don't forget to check out able2access.wordpress.com

    Author: Declan Groeger - 12 Jan 2017

  • Photo for article: A Look to 2017 With MS & Me

    A Look to 2017 With MS & Me

    Happy New Year from the MS & Me Blog Team. Here’s what 2017 looks like from here...  The media seems to love looking back at the end of each year. Reflecting on the news, the sport, the tragedies, and the triumphs. Your MS & Me Blog team take a different approach. When we get together for our year-end meeting, it is to look to the future. We have an exciting blend of topics for you in the coming months. Sure, we did look back a little bit.  It had been a banner year for the bloggers on a personal level and we celebrated.  We also looked back to see which of our blog topics resonated most with you - our community.  We found that the more personal, the more ‘real’, and the more willing we were to push the bounds, the more you liked our blogs. So, 2017 is going to see more of that. An ongoing series of posts from our bloggers about our “MS Hopes” and “MS Fears” will feature prominently this year. We have the same worries and aspirations as many of you and MS affects them just like it weighs on your hopes and fears. We’ll explore that. Another aspect of MS which we find very personal and very underexplored is the financial ramifications of this disease.  MS Ireland put figures and numbers to the societal costs of multiple sclerosis.  This year we’ll take a look at the personal matters of the pocketbook and how MS squeezes already tight budgets. We’re also going to have a go at using our personal experiences with specific MS symptoms. By sharing our encounters with some of the everyday (and some of the rare) symptoms of MS, we hope to offer you ways to explain them to your doctors, family and those who need to know what you are going through. We’ve also reached out to a few more guest bloggers this year.  Your MS & Me Blog team is excited to welcome the views, opinions, and experiences of an interesting set of people who also live with MS but may not have the disease.  Healthcare providers, care partners, employers and others who are in close contact with us have some interesting things to tell us about living our best lives and helping those around us understand and let them help us. All in all, 2016 – all of its challenges, twists and turns not withstanding – was a good year for the MS & Me Blog community. We hope that you will find our offerings of 2017 insightful, informative and, most of all, of use to you in living your best possible life in the New Year and beyond. A very Happy New Year to all who read our posts and we welcome your comments at every turn. Wishing you and your family the best of health. Cheers Trevis You can also follow us via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 05 Jan 2017

  • Photo for article: Living In This World

    Living In This World

    This week, Emma Rogan reflects on the best of what makes this time of the year enjoyable. Warning, it includes many cups of tea! Living in this world, especially at this time of the year, takes resilience- physical, mental and spiritual. December usually includes rushing around gathering gifts, meeting friends, being enveloped in the crowds, going to events and rushing headlong towards the big day. Nights out take a toll when the next day my energy reserves, depleted by the night before, are again tapped for that little bit extra to go shopping/for tea/visits with someone else. Expectations build alongside the pressure and stress. What about this, that and the other? Who did I miss from my Christmas card list and if I post the cards today, will they get it by the weekend? And what about the sprouts- who eats THEM anyway? What is all this for? Is it for friends, family, partner, daughter, son or spouse? And how do I decide what comes next? In the past, I’ve really struggled with decision-making and if I could please others, I’ll do it above everything else, even to my own detriment. Learning this about myself has been a fraught experience as I adjust my ways of thinking and slip into something more ‘me’. And like Joan Jordan’s earlier piece this month, it has taken me many years to learn how best to manage life in all it’s richness without compromising what some would say is my already compromised health. This season I’m looking for the wealth, for the glory, for that essence that puts the ‘oomph’ into living, taking one day at a time. As I stood with my family listening to readings and carols in front of the Mansion House last Saturday, I was in a state of bliss. My goal for this December was to do things differently, to make the time to start new traditions and ease towards Christmas day - I’ve gone for it ALL. There, alongside a donkey, a goat and a couple of sheep my day was wonder-filled and every other day too. Whether it was to make a big list for Christmas cards, drink endless cups of tea while wrapping gifts, take the time for people I enjoy being with (including myself) or saying no, the goals I set have been achieved. Room for more! Every day, even if things get a little crazy or things seem overwhelming, I do what I can to look for the golden moments. I’m following through, doing what I’m inspired to do and going for it all. May you go for it all this Christmas and may we all see our way to 2017 with a fistful of goals and in joyful anticipation of what might be. “This time, like all times, is a very good one, if we but know what to do with it.” Ralph Waldo Emerson You can read more of Emma's blogs on republicofemma or on Twitter @emmadragon 

    Author: Emma Rogan - 22 Dec 2016

  • Photo for article: My MS Passion Piece

    My MS Passion Piece

    This week Willeke Van Eeckhoutte writes about her passion and shares with us how her childhood dreams did come true.  When asked what I am passionate about, I need not look very far. I am in it and have my nose it in it quite a bit! People often ask me what brought me to Ireland, to which I reply, “Not a job. Not a man. Not winning the lottery, but IRELAND itself, warts and all! Rugby, history, nature, Irish people, literature, museums… why not?!” When I’m then asked “You must have been here a good while because I can hear a certain Irish accent there,” I proudly think back to Halloween 2002, ten days after securing a job in Dublin when I hauled myself and two suitcases, one 100 litre backpack and two sports bags to the airport. Somewhere mid-air over England, I thought, “This really IS happening!” Ireland was, and is, a dream that came true. As a teenager, I always found myself in a library with my nose stuck in books and travel guides about Ireland as well as watching news reports and documentaries. When I started reading the literature by James Joyce, Seamus Heaney, W.B. Yeats, Colm Tóibín and others, Ireland became something magical; the land of my heart’s desire. I became a library assistant after finishing library sciences, but it always felt as if my circle of life was not whole yet. It took me a while to finally say, “Mum, Dad, I really love you, but I have to do this. I cannot be happy if I’m not somewhere my head and my heart is urging me to go. I need to be near Brú na Boinne, Beara, An Daingean or Gaillimh and have Irish craic agus ceol!” And so I emigrated to these fine shores. Fourteen years and counting. I had a good job and had the time of my life travelling around Ireland, meeting Irish people, talking about history and singing songs by the open fire. I discovered the innate decency and caring for others in Irish people as well as passion about and dedication to their history. ‘You, the Irish’ became ‘Us Irish’. My heart had come home. In 2005, I was told that I had multiple sclerosis. Four and a half years post-diagnosis, I retired from work due to ongoing severe fatigue and all sorts of eye and facial pains. I refused to let MS define me, though.  I rediscovered the bibliophile I once was; after all I’d spent half my childhood and the better part of seven years working as a library assistant. Finally in Ireland, I stood by Yeats’s grave near Ben Bulben in Drumcliffe, County Sligo. Now I’m working my way through Joyce’s ‘Ulysses’ and the Long Room in Trinity College can still bring tears to my eyes. I’m the type of book nerd that embodies the joke about someone having to choose between books and their relationship, where the booklover says, “I still think of him/her when I leave the bookshop with more new books!” Of course, books are not everything and Ireland is not without its faults. Neither is my native country and neither am I for that matter. Greedy politicians and health systems that didn’t seem to work have inspired me to write lengthy emails asking for the renewal of disability services. I slowly but passionately waded into advocacy waters with MS Ireland by my side. A new passion was born, one that I can stretch as tight or as wide as I can. Obviously, MS didn’t disappear after retiring, but now I can rest and relax now when I need to instead of having to wait until 5pm because my work schedule forces me to stay at work.  MS is like a bowling game- ten pins at the end of a bowling alley and all over the place with a red light beeping, ‘Try again in an hour!’. At least now, however, I can say, “Nah, I will try again tomorrow because I need to go to bed and read or write a book about Ireland!” If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 15 Dec 2016

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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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