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

  • 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

  • Photo for article: Exercise and MS

    Exercise and MS

    This week Declan Groeger is not a ‘Muscle Mary‘ but believes exercise has helped him maintain a positive attitude and helped to preserve his mental health. I am passionate about exercise now but that wasn’t always the case. I am a convert and an advocate for the cause. I am not going to use this blog to tell you why you should exercise but believe me when I tell you that you should. I am going to tell you about ‘Exercise, Multiple Sclerosis & Me’. There was a time when exercise was contra-indicated for People with Multiple Sclerosis (PwMS) and that is my excuse for not exercising for so many years after my diagnosis; probably closer to the truth was the fact that I was a bit on the lazy side. The attitude to exercise has changed over the past number of years and these days exercise is actively encouraged in its many different forms.  I was never sporty except as a spectator. I never carried any extra weight. I didn’t smoke at the time of diagnosis. I drank in moderation and ate relatively healthily. I was never motivated to exercise but in any event I never realised how important exercise, or the lack thereof, was going to be in later life. I had a young family; keeping up with two small children, household chores, gardening and a job were enough exercise, or so I thought. I exercise regularly now and have done so for more than 11 years. I go to the pool or the gym 2 or 3 times a week and I also have a list of daily home exercises. I don’t want to be a ‘Muscle Mary’ and I definitely won’t be blamed for overworking any of the gym machines! I go to the gym early in the morning when I am at my best; my energy levels start to wane in the afternoon. I love the social interactions in the gym and I feel that I am doing something positive to stem the MS tide. Even though I always feel tired after a gym session it is a good tired and the feel good factor is great. I believe that exercise has also helped me maintain my positive attitude and has helped to preserve my mental health. I’m sorry I didn’t start exercising earlier but because no one knows the course of the disease or the speed of progression, it is impossible to say whether my efforts would have been any more successful. I believe that exercise is helping me in my battle with MS and belief is a powerful motivator.  I know that I should have started earlier but I also believe that it is never too late to start.  Exercise is good for you whether you are living with MS or not, but don’t overdo it. A Chinese proverb says ‘the best time to plant a tree was 20 years ago. The second best time is now’ and the same can be said for exercise – it is never too late to start. Looking forward to your comments... Declan Don't forget to check out able2access.wordpress.com

    Author: Declan Groeger - 18 May 2017

  • Photo for article: The Hurry-Up Life!

    The Hurry-Up Life!

    This week Aoife Kirwan articulates her many MS related fears and why she thinks MS is a bit like Ramsey Bolton! When I first thought about a blog dedicated to fears, I was a bit reluctant to start it. I do have many MS related fears but I don’t often give myself time to really think about them. My mind wanders, one thought leads to another and as they travel, rationality gets lost along the way. It’s difficult to articulate my fears into some sort of logical order that you might be able to read and make sense of, because quite often I can’t make sense of them myself. I know that MS has the potential to affect me far more than it does now. Knowing the possibilities doesn’t cause fear for me; it is in the not knowing that the fears originate. I like to be informed. I feel more in control when I know the possibilities with MS and I think of information as a sort of armour. The more I know, the more I can do to help myself, to protect myself. Since diagnosis I have been lucky in terms of my relapses, I haven’t really had many and anything that I did have was quite minor and disappeared as fast as it set in. I do feel a bit like a fraud at times- I have MS but I am pretty symptom free (apart from fatigue and concentration issues). Although I am aware of the possibilities, either I have deluded myself or I have mindfully created a ‘safe bubble’ as a coping mechanism to protect me from unexplored fears in my mind. My mind contradicts itself. Sometimes I feel like I don’t have MS, but I always know I have it. I always know the reality of the situation.  I’m sure some of you have watched Game of Thrones, and for those of you who haven’t watched season 6 yet *spoiler alert* skip to the next paragraph - MS is a bit like Ramsey Bolton. The scene where he is shooting arrows at Rickon Stark as Rickon tries to run to safety reminds me of how I feel about MS. I am running, hoping, but also knowing that MS has a long reach and I will eventually be hit by that arrow.  Worse than Ramsey killing Rickon Stark, it was how Ramsey dangled freedom in front of him, having him run towards it and then killing him anyway. I am moving through life, carrying on – but the fear of being struck by the MS arrow looms over me because I never know when it’s going to happen. At least knowing the possibilities helps me protect myself, that’s what I mean when I say that information is like armour. If I’m well informed I can help myself, keep myself well and give myself the best chance possible. I just want to do so much with my life before that arrow hits.  I fear not being able to live an ‘ordinary’ life. I look at people my age and often think about how it must be so easy for them not having this extra baggage, but everyone has baggage of some sort! The society we live in is very false. Social media has most definitely had a huge effect on me and people my age.The likes of Instagram and Facebook are filled with pictures of people's seemingly incredible lives. People seem to push the positive things forward, and I am no exception to this.   I know that people get to where they are going in their own time, and that there are no timescales for achieving life’s dreams, but when you fear being out of the work because of MS, the urge to succeed in a short timeframe escalates greatly. I fear not living my life fast enough, not achieving what I want while I can. It's important not to feed into this but its difficult.  Then, I remind myself of this quote I read a while back, ‘A flower doesn’t think of competing with the flower next to it, it just blooms’. Just bloom.

    Author: Aoife Kirwan - 11 May 2017

  • Photo for article: MS & Hope

    MS & Hope

    This week Joan Jordan shares her hopes and is calling on your support to produce a book for people living with MS. A lot of the things I do are based on hope. It’s the primary reason I signed up for a clinical trial. I hoped that my MRI data and blood samples could contribute towards finding a cure for MS. It’s why I write blogs for MS & Me. I hope that I can help others in a similar situation see that they are not alone and that we are stronger together. It’s why I applied for funding from the Irish National Lottery to publish a “HuManS” book in 2017 for newly diagnosed people.In the Louth Branch, we produced a single copy of a selfie book on a limited budget to mark World MS Day 2015 and the hope is to publish on a national, digital scale in 2017. Minister Harris has granted me €5,000 to make this hope a reality. I thank him for his vote of confidence. I pledge that I will do all I can to produce the book I wish I had been given when I lay post-diagnosis in a hospital bed in 2010. Something that could have given me an indication that life with Multiple Sclerosis can and DOES go on. I have completed a photography course and have learned how to make and edit videos. I have started to take pictures for the book at locations where people with MS work- as this takes a while to get clearance from Human Resources. To take part: I need to take your photo and ask you your name, when you were diagnosed and what you would say to someone who has just been through it. I hope that you will consider being a part of the book! I plan to launch the Facebook page for the project on World MS Day at the end of May and you can find out more information then.  At the start of 2017- I read a post on Facebook detailing some of the positives from the previous year. Scanning through the comments, I pondered about my best moment of 2016. Getting a letter with a Dáil Eireann water-stamp informing me that I had funding to make the book happen was a bitter sweet moment. I had just returned from a tough day in hospital when it arrived. It was a day when I felt hope had evaporated and then something unexpected happened to rekindle the remaining dregs. Maybe it wasn’t the best day but it was a day of mixed emotions where hope emerged on top.  Barack Obama said that “The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope, you will fill yourself with hope.” The alternative is to give up and I’m not ready to do that. I hope you will help me produce the “HuManS” book and share your story of living life with Multiple Sclerosis in Ireland with people who have just been diagnosed.

    Author: Joan Jordan - 04 May 2017

  • 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

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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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