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

  • Photo for article: My New Year's Resolutions

    My New Year's Resolutions

    As January 2015 steadily moves forward, I’m still reassessing old goals, opportunities and of course, trying to remove negative habits.  Sadly, I’m part of the group of people who will only manage to stick to resolutions for a couple of months. Unconsciously, resolutions even have a dirty ring to them, “Too busy,” or “Forgotten,” or even “Ah sure, I’ll get to it at some stage this year.” Looking at old attempts at quill driving, I found that my list with new year’s resolutions for 2013 entailed at least 15 resolutions. Quite a long list, I agree. The more items I added to the list, the more chances I had of fulfilling at least one or two, purely for self-gratifying purposes of course. A quite flawed strategy, of course.  Since retiring from work, I’ve been on a big, long journey of self-discovery, and so far, I’ve sailed through it pretty much unscathed. A few small bruises to my ego happened along the way, but like donkeys, I only learned not to make the same mistakes again.  This year, my list of intentions is generic, almost 100% the same as those published in female magazines. Losing weight, cutting down on stress and socialise more are just a few of the resolutions. We all know however that with MS, your list of resolutions can become a very different list. Priorities change and outcomes might be less profound, but we can only try. Just try. Never mind people’s endorphins getting a boost when telling others about our intentions, I want my brain to listen, and listen well in 2015. Getting more informed about brain atrophy for example. Brain shrinkage is not something many people with MS wonder about, as it’s the new kid on the research block. An ideal resolution candidate if you ask me! Second on my list is to finally listen to my body as intently as possible, as the four-month relapse in 2014 showed me that I wasn’t paying attention well enough. I often use “RRS” as abbreviation, meaning “Rest, Relaxation and Sleep,” so for this year, I have drawn up a schedule in my mind to force-feed myself if need be with ‘RRS’. Quality of life (QoL) needs to be improved in this area of my disease activity. Thirdly, I created a physical and mental map of my disease activity, as I often see my medical team, but can never remember how I managed throughout the year. Adding daily info to it will absolutely help me, my neurologist, primary care physician and others in my medical team to prescribe targeted relief of symptoms. Adding activity levels to it will also show me how my weight will fluctuate throughout 2015. People with multiple sclerosis are quite informed about their illness, and it’s very important to stay in touch with them to share and discus old or new treatment plans. We learn from other’s QoL and how to achieve it. Sharing New Year’s resolutions is definitely part of this busy information highway. There’s a lot happening in the MS research field, and being a curious type, I need to get reading and researching myself. I even want to donate my living brain to research, because we all know that we want that grail, that four-letter word called ‘cure’. If you want to know more, visit Ireland, Multiple Sclerosis & Me  

    Author: Willeke Van Eeckhoutte - 22 Jan 2015

  • Photo for article: New Year's Resolutions

    New Year's Resolutions

    A new set of challenges! 2015 is finally upon us and each New Year brings a new set of challenges. Our reactions and attitude to those challenges say a lot about us as individuals. It has become customary, dare I say expected, that we all make New Year resolutions but it seems to me that we are expected to fail. The resolutions are expected to fade into obscurity shortly after making them and people rarely think less of us for allowing that to happen. New Year resolutions should not have the short lifespan of a Lenten forbearance of 40 days and then reversion to type immediately thereafter.   It may seem a bit late to be talking about resolutions now that  New Year’s Day has actually passed but resolutions do not have to be commenced on January 1st they can be started at any time and in my humble opinion they are better started away from the fanfare and hoopla of the New Year.  Before making new resolutions I think we should look back at the last lot we made and assess their success or lack thereof. One thing for sure is that we should not stop trying. If last year’s resolutions were not the greatest success remember the age old motto “If at first you don’t succeed try and try again” and then think of the other old saying “The true mark of a man is not how many times he falls but how many times he picks himself up” Think carefully about what you want to achieve and then plot your route to the target. I have written before on the importance of focus and without focus you will not hit your target while always remembering that it takes 3 weeks for a good habit to take root but unfortunately it only takes 3 days to uproot it. Resolutions do not have to be about forbearance; giving up smoking, losing weight. The more important resolutions are positive in nature; being a nicer person, volunteering, getting fitter. These positive resolutions will benefit others as well as ourselves. A smile, a kind word a friendly contact all cost nothing. I write down and keep track of my resolutions/plans and it helps when I notice I am slipping.  I only made one New Year Resolution for 2015; it is simply ‘to be the best I can be’. This may seem a bit wishy/washy as resolutions go but it works for me. As I said in a recent blog post on Living Like You, MS has robbed me of a lot particularly in the physical side of things but having a New Year Resolution allows me to focus on overcoming the downside of MS and enhancing the positives in my life.  So in conclusion New Year Resolutions are a necessary evil but we can adopt a resolution at any time.

    Author: Declan Groeger - 15 Jan 2015

  • Photo for article: New Year, Healthy Eating

    New Year, Healthy Eating

      Each New Year sees me making a list of resolutions that I end up forgetting about after a week. Usually things like “I’ll make my bed as soon as I get up”, “I’ll get to the bottom of the laundry basket”, and (the old favourite) “I’ll stop eating crisps and biscuits and stick to healthy, nutritious meals”. It’s usually a half-hearted attempt, I am a lazy lump when it comes to housework and love nothing more than sitting on the couch with a packet (or two) of crisps. Over the last few months however, I’ve become more interested in eating healthier. If you Google “MS and diet” a lot of results pop up linking what we eat to symptom management and progression. It can be overwhelming to see all the different websites, and knowing where to start, but I spent some time going through it. To be honest, the large amount of information was off-putting to me. So much so that I nearly avoided it altogether. It seemed that not only would I have to cut down on the junk I was eating, I’d have to learn a lot about fats and oils and supplements. It was easier for me to carry on eating as I was than try to get to grips with such an overhaul of my diet. I know a lot of people with MS have seen results from following a more restricted diet, and I can’t discredit their experiences, but it just wasn’t for me. I took some time away from it and had a little think about what I wanted to achieve. I had to look at my overall health and wellbeing, not just my MS. Am I not always saying, “I am more than MS”? By that same reckoning, shouldn’t my diet also be about more than MS? I figured that I needed to eat better to live better. Lose a bit of weight, look after my entire body. Just because I have MS doesn’t exclude me from developing other illnesses. After a bit of pondering, I decided I’d improve my diet for me and not for my MS and, if my symptoms became more manageable as a result, it would be a bonus. So from November I followed a simple eating plan. I made an effort to cut back on processed foods and started making more from scratch. Nothing fancy now - I can rustle up a stir-fry or bolognaise or soup, but you won’t be getting a three-course homemade meal if you call for your dinner. I won’t pretend that I stuck to the diet every day, but I was determined to do my best. I also did a detox for a week and cleared my system. I got into a routine of sticking to three meals a day, and not picking in between. In the run up to Christmas I felt good, had lost a bit of weight and liked what I was eating. I relaxed over my time off work and overindulged a bit (a LOT). I thoroughly enjoyed myself but by the new year I was ready to get back to my diet. Eating well makes me feel well and when I feel well I am able to get through the harder MS days. I have many plans for 2015, some for myself and some with friends and family. I intend to be as healthy and fit as I can be so I can experience everything I have planned to do. If that means fewer crisps on the sofa and more strolls with the dog, I think I can live with that. I don’t think I’ll ever get all the laundry done, though! I can’t claim to have this diet thing cracked, I am sure I am doing certain things “wrong”, but I know I am looking after myself better than I was before. Thanks for reading, I look forward to your comments. Niamh

    Author: Niamh McCarron - 08 Jan 2015

  • Photo for article: Go Your Own Way

    Go Your Own Way

    This week, Emma Rogan looks back on the year of MS and Me and reflects on the paths we take through life.  Last month Trevis Gleason took a look back on the official birthday of the MS and Me blog. The successes, the achievements, the people we've reached and the stories told.  So where are we, as a community, now? What is going on for people with MS or other neurological conditions in 2014 in Ireland? There are thousands of experience with a myriad of stories about how well people are doing, how their daily lives are improved because they are getting the supports they need at a challenging time and how they are keeping themselves well. But the waiting lists remain; people don't have access to neurologists nor neuropsychologists, to counsellors to talk their feelings out, to employment advisors to work things out or to financial support so they can live beyond a state of penury.  But aren't the lights back on in the country? To look at the news, we see that the country is 'back on track' in terms of the economy (never mind the water protests by thousands of people and the cuts across our social systems). Is this the same path trod during the Celtic Tiger years, where people believe the 'news-speak' rather than critically examining what's behind the words? It is just another 'calf path' that we are following just because it is the path that is well worn and used?  The Calf Path is a poem by Sam Walter Foss and tells the story of a 'primeval' calf as it walks home 'like a good calf should'. But this calf is wobbly on its legs, going here and there in a crooked way, eventually getting home. The next day, a dog follows the calf's path, then a bell-weather sheep leads the flock along the crooked path. As it is worn down, going higgledy-piggedly through the woods, it becomes The Way. It is such a crooked path that is cursed by all who use it but use it they must because it is The Way. The path became a lane, the lane became a road that was difficult to walk yet it then a street where thousands every day step their feet. Now, thousands of years on, it is that bendy road that curves this way and that through our community/village/town/city. It is the primeval calf, wobbling its way home thousands of years ago, that is still leading us this way and that.  Adventure on another person's path is useful for a time but we need to make our own way as we live our own lives. Each and every story written on the MS and Me blog over this year is a new path never stepped on before. People have been discovering their own way, how to manage a condition that they never expected to come to their door. Whether it is work, family, mothering, activism, relationships, spirituality, incontinence, the balancing act, disclosure, fatigue or something else, it is all being lived by every person, everyday.  We are an eclectic bunch, people with MS. Diverse, determined, struggling, thriving, annoyed, happy and joyful. No matter what, nothing in life can prepare people for the adjustments that MS sometimes forces us to make. At times, we do walk that 'Calf Path' because it is easier and it is the best things for us. But don't let your life be a walk along the path of a creature that bares no resemblance nor has no understanding for what you want for your life.  As this year draws to a close, the MS and Me blog team will look back at this first full calendar year with gratitude that we get to speak of the unique ways we live with MS and share with you failures and successes. Take some time to look back at your own path through the past year and reflect on what has past, your own successes, what could have gone better and what you learned. Reflecting is one way to grow and allows us to look with joy to the days that are to come.  From my family to yours, may your days be happy and bright this Christmas and your New Year be filled with joy.  Join Emma on Twitter @emmadragon and blog at republicofemma.wordpress.com 

    Author: Emma Rogan - 30 Dec 2014

  • Photo for article: Christmas with MS

    Christmas with MS

    In this week's MS and Me blog Joan looks at big hetic life events like Christmas when you have MS. She said 'This is not meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too' Without a doubt, the best Christmas I have had with MS was the year we unexpectedly got snowed in. Thankfully, we had enough heating oil and food in the freezer to keep us warm and fed but all the trimmings went up the chimney. I didn’t get to queue for hours in the cold to see the Big Man in the Red Suit. I didn’t get to trawl the shops to find a donkey costume (for the school nativity play- not me!). I didn’t get to sing carols and wear a paper hat while wedged into a restaurant for second sittings. The highlight was that I didn’t get a telephone-book-sized credit card bill in January. I DID get to play marathon games of Scrabble with the kids. I got to laze in front of the fire and watch mediocre TV for guilt-free days. I got to build snowmen, snow-dogs, snow-aliens. I got to invent questionable meals from the slim pickings we had left in the fridge. I got to wonder why I was putting myself under so much pressure the years when the roads were clear. Big life events and holidays can be difficult when you have MS. Weddings, funerals, birthdays, Christmas… The times when you need to be “on” for a long time. Or maybe you feel that you are expected to be “on”.  No matter how you wrap it up, being ill sucks when you want to have fun like the other kids. I do use the “buy now, pay later” approach sometimes but boy, do you pay! I read Simon Fitzmaurice’s book “It’s Not Yet Dark” during the year about how he lives his life with Motor Neuron disease. He writes about “being a person- not a disease”. He says that “it’s not about how long you live but about how you live”. What wise words!  There is a distinct possibility that I might not be as mobile next Christmas, so I want to “tear the arse” out of it while I can. To do everything on offer, in case I can’t next year. To tick a few things off the bucket list. The pressure can be overwhelming and a lot of it comes from within. I think I get a bit mixed up between quantity and quality. Christmas can be a happy time when you are in a happy place. It can also be a very sad time when we mull over the year’s lousy events. I feel sad when I look around and see friends of mine (yes, REAL PEOPLE WITH REAL FEELINGS!) who have declined during the year because of MS. When we plan something but it doesn’t happen because of MS. When somebody I like can’t afford to buy bread and milk because they need to buy drugs for their MS. But this wasn’t meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too. The year we got snowed in, we had a stripped down Christmas. Board games, ghost stories and snowball fights replaced the bright lights of Santa’s Grotto. The Grinch was talking sense when he remarked that “maybe Christmas doesn’t come from a store”….. Here’s wishing you and yours a Merry Christmas: full of triple word scores, selection boxes and “Only Fools and Horses” marathons! Be good to yourself and do what you can. Say “YES” to life for what it is. Have you any tips on how to cope with Christmas and MS?

    Author: Joan Jordan - 18 Dec 2014

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