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

  • Photo for article: MS & My Money

    MS & My Money

    This week Joan Jordan speaks powerfully about the reality of living on a fixed income. She shares with us the value of being honest about financial issues to ensure you don’t miss out on life. I will NEVER lose the thrill of getting my first ever, real, grown-up pay-check. Emergency tax couldn’t dull the buzz of having my own money which I could spend on whatever my 22-year-old heart desired. The cash was mine and the shops were calling. Oasis first! I swanned past the 70% off rail and noticed an avocado green suede skirt winking at me coquettishly. I tried on the timeless classic and handed over the notes. I loved it! Buying stuff with my own money rocked! Since I got diagnosed with MS, I guess I have adjusted my lifestyle considerably. You could say that I am cutting my green suede to meet my measure- which is currently postage-stamp sized. I need to watch out for getting trapped into expensive events where the champagne is flowing and the bill is split at the end. I know the price of everything and the 70% off rail is the only place that is not off limits in Oasis. Digging deeper- having my own money which I had earned myself gave me a sense of worth. Now that I don’t have my own cash, I feel a loss of independence and certainly a huge amount of guilt that I can no longer support my family financially. I have an honours degree in Computer Science from Trinity College and a EUPATI qualification (patient education) but despite many applications, I haven’t even been given a single interview since I got diagnosed in 2010. This gets discouraging after a while and my confidence has certainly taken a bashing. I do worry about the future and how we will manage financially. It’s hard not to. Currently, one ad on the TV really irks me. It’s about Kate and Mick. It’s the last day of their mortgage and it ends up with Kate remarking that despite their trials and tribulations- “We just KNEW we could make it work”. I want to make it work Kate- believe me I do. Sometimes, things outside your control happen and try as hard as you can, it just won’t work anymore….   Having lived on a tight budget for a few years now, my advice would be to take a good look at how you are currently spending your money. Cut out what you consider frivolous but be careful not to launch into full blown austerity. If you really like the branded ketchup- then let it remain on the shopping list. If the fancy coffee to mark the end of the week makes you feel better- then relish every drop and don’t let yourself feel guilty about it. If you get invited to an occasion, be clear that you are covering your own costs. If you can’t possibly afford it- don’t go! If you really can’t make ends meet, talk to somebody you can trust or even your local Citizens Information to check that you are getting all your entitlements. Denying the problem doesn’t help. Have you got any tips on managing your money while living with MS? I would love to hear them.  **IPPOSSI, The Irish Platform for Patient Organisations, Science and Industry, is developing a Patient Education Programme in Health Innovation. Apply before the 30th June to take part. 

    Author: Joan Jordan - 22 Jun 2017

  • Photo for article: MS and Hope

    MS and Hope

    This week in a blog about MS and Hope, Emma Rogan explores her understanding of the word ‘hope’ when it comes to living with MS.  “I hope so”. “Hopefully.” “I hope you’re feeling better soon”. I don’t like the word ‘hope’ as it has come to be used. It’s non-committal, unrepentantly bland and the perfect word to avoid dealing with an issue. I don’t think the condition ‘MS’ and the word ‘hope’ go together. Let me explain…. Being diagnosed with MS lead me down a path of research, adventure, heartache and self-discovery. From the first week when I walked my numb/pins and needled legs to Mullingar library to search for words about MS, HOPE, as I understood it, was far from my mind. I needed words of substance- the science, the experiences and strength of others, a reality to latch onto that would save me from the Overwhelm. I craved information on this mysterious disease for which there was no known cause, no cure and according to some health care professionals, nothing I could do about. Other people did what they thought was helpful, regaling me with stories of a magical juice that “cured Mary from *Roscommon in a few months for just 399.00 per month!” or the healer that “Swear to god, John was cured straight away. Shur (sic.) look at him!”. Their hope was grounded in magical thinking and the last thing I needed was magical thinking.  During my time in Westmeath I became close friends with a GAA dual play (football and hurling) Mickey Fagan. He had been diagnosed with MS early on in his sporting career. Mickey reinforced my distaste for the word ‘hope’; he was also of the mind that hope was a vague word that gave people an easy-to-access exit away from reality. I stopped using the word hope and all its derivatives in my every day speech. MS was a thief that came in the night to steal, to pillage my sense of self and leave a disgusting smear on my life. In the early stages, I became anchored to certain beliefs of what it meant to have and live with MS. It was a dark, lonely space of distorted thinking. Those first few days, post-diagnosis, are remembered as a dizzy new reality. Those early weeks of learning a new language of myelin sheath, axons, oligodendrocytes and the months of insanity that lead on. Then, as I began to reconcile myself to living with a chronic illness, I started on a path of self-discovery and personal recovery.  In the early days after diagnosis, I thought it was living with MS that robbed me of my future and made me insecure about my life. But it was the denial of the other 99% of what makes me, ME, that distorted my perception. I was looking the wrong way through wonky glasses. Thanks to curiosity and the years of reading, researching, learning, educating myself and building a personal system for living, my perspective has changed.  I cannot change my diagnosis nor can I alter the days that have been lived. I wasn’t ever promised a life of ease. However, every day I get to make choices. I choose to go to bed early so my energy is topped up for the next day. I choose my way to work and when fatigue hits, I choose to listen to my body and rest. I choose kindness and to look for good things. I choose my behaviour in my relationships  with others and myself. I choose my nourishment (body and soul), I choose my treatment, I choose a therapist to help me deal with my personal issues. I am kinder to others and to myself. I can now look at those early days stumbling around, I didn’t think I had any choices. Now, making choices restores my belief in myself and I can allow a way of life that brings me to what I thought impossible, a sense of peace. Dare I say that today I’m reconciled with ‘hope’ and open myself up to creative possibilities as I gain peace of mind and a life well-lived. I might even start including the word hope in my sentences again. Check out Republic of Emma and follow Emma on Twitter 

    Author: Emma Rogan - 15 Jun 2017

  • Photo for article: My MS Fears

    My MS Fears

    This week Niamh McCarron lets us in on challenges she confronts, the bridges she has crossed and the fears that sometimes haunt all our nights.  “We’ll cross that bridge when we come to it”. That's my normal approach to dealing with uncertainty and fear. The truth is, I will normally do anything to avoid crossing the bridge at all and if I can get away with it, I’ll avoid it altogether! I don’t like talking about my fears, because that means I have to think about them and generally I try to keep those thoughts in a wee ‘MS box’ locked away the back of my mind. I know it’s there, rattling around, but I don’t delve into it very often. When I sat down to write this piece, I decided that if I was going to do it right, I had to at least acknowledge that I am sometimes afraid. I don’t get scared very often and so far I believe that having a “deal with it when it happens” attitude has helped me to cope with my MS diagnosis and progression. Thinking and writing about being afraid takes me outside my comfort zone - it’s not in my nature to stop and think about all the what-ifs.  Of course, everyone has fears. The week of writing this coincides with the Manchester bombing (and more recently the London attack); we’re all very aware that it’s a scary world we’re living in. A large-scale event like that can make you feel small and that your own fears aren’t relevant or important, compared to people with Real Problems (with a capital R and capital P). I don’t think that’s true, though. The fears and thoughts that occupy your mind and keep you company in the middle of the night when you have a flare up and can’t sleep are very important and significant. The theme for World MS Day this year was “Life with MS” and thankfully my life with it is pretty good. I don’t have too many bad days and I can usually get on with doing what I need to do. There are times when I get afraid though, especially about the future. MS is such an unknown illness, and while I am well now, I have no way of knowing how it will progress.   I recently wrote a short piece about the idea of ‘Quality of Life’ and its importance to me, something which I am very passionate about. The flipside of that is where my fears lie. The fear that the freedom that I take for granted today will, someday, be taken away from me. What if I can't work someday? I won't be able to pay my bills and rent but as important, I won't be able to enjoy the daily interactions with my colleagues and clients. I have worked hard to build up my career over the last 10 years and I am a long way off retirement age yet. While I dream of winning the lottery and jacking it all in, the thought of having to give up work because of illness frightens me. Similarly, if I become too unwell to go out and about, how isolated will I become? How long will it be before everyone else's life moves on without me? What will happen if I become dependent on someone looking after me - how much of a burden will that be to my husband, family and friends? This is one of the fears that gets me in the pit of my stomach, usually in the middle of the night, when I am too hot or cold or restless or tired to sleep and leaves me anxious the next day. Being afraid is hard and it can be exhausting and lonely. Talking about your fears can help and taking steps to plan for the future can ease some worries. I hope that my fears don’t materialise, but if they do, I hope I have the strength to keep on crossing those bridges. That’s how I’d like to end this post on my MS Fears, by saying that while they are real and valid, they will never eclipse my MS Hope. Your ever-hopeful friend, Niamh

    Author: Niamh McCarron - 08 Jun 2017

  • Photo for article: We Are People We Are Ireland

    We Are People We Are Ireland

    This week to mark the occasion of World MS Day, Aoife Kirwan talks to TDs and Senators in Leinster House about the quality of life for people living with MS in Ireland. Read Aoife's inspiring speech! ‘I'm here to talk to you this morning as a person with MS but I am much more than that. I am many things, a friend, a sister and mother. I am a person with hopes, dreams and ambitions. I, like each of you - and each person who makes up our country's population, am Ireland. I'm proud of my heritage, my culture, my country but I'm scared.  I was diagnosed with relapsing-remitting MS in 2011 -aged 23. I don't think there's any way to fully prepare you to receive that kind of news as a young person, a student, someone who is just about to embark on life's journey after almost 20 years in education. I was heartbroken. Instead of excitement for the future, I feared it. I feared the unknown. What would my life be like from that point? How was I to move forward? The symptoms of MS were frightening, I had a string of them, one thing after another but the diagnosis came after I lost 98% vision in my right eye. Worse than the fear of MS was the fear of what MS meant? I grieved for the life that I planned but I could no longer count on.  Everything became tainted with 'what if'. What if I lose my independence? What if my condition deteriorates? What if I become so bad that I can't work? What will that mean for me? For my child? How can I build and secure our future? What if I become a burden on my family? What if, instead of helping parents as they age they are the ones trying to take care of me? These are not the common fears of a 23-year-old. Instead of bouncing into my future like I thought, I was being dragged. I felt sadness, I felt grief, I felt despair. MS doesn't have to mean fear. With access to the right services at the right time - I can let go of grief. I can let go of sadness. I can let go of despair. I can embrace hope. I can embrace happiness. I can embrace my future. I don't want to have a lower quality of life than others. I want the quality of my life to be determined by the amount of effort I put into it. By maintaining my quality of life I can follow my destiny without fear. 60% of people with MS across the EU are working, in this country, that figure falls to 43%. Why are we less worthy? What does that mean for my life? My future? My child's future? As a mother there isn't much that I think about that doesn't involve my child. He looks to me for everything- for guidance, for love, for support, for sweets. I wonder how many of you are parents? What kind of Ireland do you want to leave your children? I want my child to see his community and his country working together to help each other. I raise him with values that I believe will help him to be a positive and valuable member of society. I teach him to be respectful, to work hard, to think of others. He is Ireland. There is no strength without unity. In a time of political uncertainty across the globe, it is important that we look inwards, that we look after each other and support each other. The MS community is strong and I stand before you as one of over 9000 people with MS in Ireland. We are powerful. We are passionate. We are positive. But our positivity is not to be mistaken for lack of struggle. Each of us has our own symptoms, our own stresses and our own stories. I encourage you to read Declan, Niamh and Magg's case studies which you will find in the report. We have lives behind the numbers that you see throughout this report. We are people. We are Ireland.  You have the power to help me and others like me to stay well, to have the opportunity to live life, to raise families, to work, to contribute to society instead of being a burden on it. Putting vital services in place will allow me to live the life that I dream of. To ignore the needs that we are telling you we have, is to condemn us to a future that we deserve more than. You have the power to change the path of each person with MS. Leave your mark, leave your legacy; let it help me to make mine. Let it help the thousands of people with MS live the lives they deserve to live. You can make this happen. You are Ireland.  We are all Ireland and I stand before you, asking you to be the Ireland that I and over 9,000 people in this country needs’.  Ni neart go cur le Cheile

    Author: Aoife Kirwan - 01 Jun 2017

  • Photo for article: Living With – Not Suffering From – Multiple Sclerosis

    Living With – Not Suffering From – Multiple Sclerosis

    In the lead up to World MS Day 2017, MS & Me blogger, Trevis L Gleason gets behind this year’s theme Life with MS It could be said that I often quip about my multiple sclerosis as a coping mechanism. “Sure,” I’m oft heard saying when someone bemoans my disease more than I do, “We’ve all got something and there ain’t none of us getting out of here alive!” Is a favorite, as well as, “Better bad breath than no breath.” I’ve learned to take the things that MS (and life) hands me in the stride of existence. This isn’t always easy, particularly when my ‘stride’ is an MS gait which looks like I’m the monster from a bad Frankenstein remake or a hobbled gunslinger from the KO’d corral. Perhaps I can keep up this pithy attitude for the sake of appearances, or more likely, I must in defense of my own sanity. Forsooth, “If I didn’t laugh, I’d cry… and I’ve cried enough about MS” has got to be the truest of my ironies. My life with MS – as much as I can possibly make it – is about the living party. I get sad, have had bouts with MS-related depression and am sometimes even angry about what I can no longer do, just like anyone else who has heard the words, “You have multiple sclerosis”. But until they hang a tag on my toes, I’m going to drag them in the sand, dip them in the tide and dirty them in the garden. Which brings me to a raspberry seed that’s been stuck in my wisdom tooth since I first moved to Ireland nearly 5 years ago. I am not a ‘sufferer’! In press articles and reports, in biographical paragraphs and introductions, in speeches and interviews, I hear us being referred to as ‘MS sufferers’. I find that term archaic at best, arcane in all likelihood and offensive for certain. While I will not deny that I experience and am subject to symptoms of my disease and I am affected by, and become worse (all part of definition #1 of suffer from the Oxford English Dictionary), I am not a sufferer. I also struggle to surmount the definition of contend with MS but no one thinks to call me an MS contender. I deal effectively, cope, but the media doesn’t think to call me a coper.  We remain, we are faced with and experience my symptoms but you won’t see enduror, undergoer or encounteror in print. Why then am I a sufferer?? Absurd, of course, are these awful monikers for someone who lives with a disease.  And don’t get me wrong, I’m not expecting to be called a liver either!  I’d simply like to be a person, like you, like your family, like the rest of our community and the world. I am a person…. Yes, I’m a person who lives with MS, but I’m a person first, last and foremost. Why doesn’t the media stop using ‘sufferer’? Because we’ve let them get away with it. This year’s World MS Day is titled ‘Life with MS’. LIFE with MS.  A successful Life with MS is all about the living part. I call on all of us living with MS to stop people when they call us sufferers. From here on, when I see it in a paper, hear it on a radio program or see it on television, I will call, write or e-mail the offending media outlet and correct them. It is time we are seen for more than our disease. We are contributors to society, we make the world a better place for ourselves and our community, we get up in the morning and do the best we can with what we have for as long as we can. We LIVE our lives with MS and we are people first. Happy World MS Day 2017. May we all LIVE our Life with MS. #LifewithMS Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis L Gleason - 25 May 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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