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

  • Photo for article: A Stress Free Christmas

    A Stress Free Christmas

    This week from the MS & Me blog archive Joan Jordan shares how she is *learning* to have a stress free Christmas. This year, I will celebrate my eighth Christmas with my MS diagnosis. I choose the verb celebrate very carefully as it is not the first one that springs to mind when I consider how this unwelcome guest affects the way I mark the festive period. In Christmases past I have stubbornly battled to ignore the fact that I have a chronic illness. I grabbed every party invitation December threw at me just to prove that I still had it. I pulled out all the stops and did my level best to swing from the chandeliers. This ended in exhaustion and tears of frustration at my altered self. On one occasion, I paid for it dearly with a January relapse. I have also tried another approach whereby I assumed the role of the Grinch at Christmas and cut myself off from the people I love, the very people who genuinely wanted to spend time with me- despite my MS. The people who accepted my limitations and were willing to find a middle ground where we could still enjoy ourselves. The people who didn’t constantly harp on about how much craic the old Joan was. This led to a lonely time where some of these lovely people eventually stopped making the effort.  As time passes, I take good advice from wise companions who have travelled the MS path for longer than I have. I am learning to strike a balance, the right balance for me which strangely enough is also the right balance for my friends and family! I now think carefully before I accept an invitation. If it is feasible, I accept it but make it VERY clear that sometimes- because of my illness, I need to cancel plans at the last minute. If the invitation is not realistic, I explain why and suggest a compromise.  Things have changed. The thought of the traditional meander down thronged shopping streets on Christmas Eve now seems like the opening scene of an Indiana Jones movie BUT the prospect of a hot-chocolate in our favourite coffee-shop a few streets away (where we know we will get a table) ticks all the boxes. The frantic dash around department stores to snap up last-minute gifts has been superseded by on-line shopping where the parcels are delivered right to my door. A trip to a jam-packed restaurant has been upgraded to a take-away in front of the fire where we don’t have to worry about making swift exits due to my unpredictable bouts of fatigue. This blog is titled ‘Having a Stress Free Christmas’. I’m afraid that I don’t have all the answers but I know that as the years pass I am learning how to help make Christmas less stressful and hopefully, more enjoyable for me and those around me. What do you find works for you? I would love to hear your suggestions. And most of all- I wish you a Merry Christmas and a Happy 2018. Blog originally published December 2016

    Author: Joan Jordan - 07 Dec 2017

  • Photo for article: My Bucket List

    My Bucket List

    This week from the MS & Me archive Willeke Van Eeckhoutte lets us in on her bucket list, how she uses it and the importance of having goals in her life.  The older I get, the more nervous I become of not being able to achieve all the things I set out to do. After all, every year rushes by, seemingly at a faster speed than the year before! Science is still to crack the code of becoming younger instead of older. And therein lies the problem if you’re a non-bucket-list achiever- at some point in life you will begin to think “Argh, if only I’d…!” done something. But the clock can’t ever be turned back. Being of the opposite kind, I yelped an “Argh!” when I realised I lost all my documents during a laptop crash last year, and I had to rebuild, rethink - or even worse - try to remember what was on my bucket list to begin with (Memory issues… ouch!). Having a bucket list is all about personal fulfilment, and it doesn’t really matter how short or long your list is, as long as it has/had substance over form. My list was/is filled with generic things I imagine many people would love to do- like swimming with dolphins or winning the lottery. Other personal dreams would to be in touching distance of wolves or have much-needed weight loss surgery.  Goals that have already been fulfilled are living in Ireland • Watch sunrise/sunsets on the west coast • Newgrange • WB Yeats’s grave • Rome • Venice • The rest of Italy (•½). Study psychology (• ½). Writing a book (• ½) and many other things. The list is therefore very much a work in progress, which can expand or shrink at any given time. Thankfully, I’m someone who likes to grab the bull by the horns. Where and when possible I chase my dreams as best as I can. Like moving to Ireland. This was a wish and a teenage dream. In it, I have the sea in front of the house and mountains in the backyard. I would also marry someone Irish, who has red cheeks from always being outside and we would live happily ever after. Sadly, marrying someone with red cheeks never happened, and where I live has neither beach nor mountain. Nevertheless Ireland has been a happy home for the last 13.5 years. MS may have tempered the speed of fulfilling the list somewhat, but there is still some life left in it. I am quite mindful though that it doesn’t turn into a check list that urgently needs to be ticked-off and wiped clean every day. The way I treat my bucket list is to forget about it. Continuously aiming for the goals can take away the beauty that is already around us, and in the people we share our life with. We cannot forget to live in-between the goals we have chosen to put down on paper/computer. You also cannot forget to “live in the now” (as mindfulness therapists call it) and make time for those around us. The present is now, it is all we have, it IS as important as what lies ahead. Spontaneity happens when you allow and figuratively step out of the way.   In hindsight, a week in Rome with my mum earlier this year tops everything else I have done or achieved so far. We owe it to ourselves to keep having dreams and to continue putting things on our lists. Life would be rather dull otherwise. Like Henry David Thoreau said, “Do not lose hold of your dreams or aspirations. For if you do, you may still exist but you have ceased to live.” It can reignite your dreams to put them down on paper and remember what lights your spark. Check out https://bucketlist.org/ for some inspiration.  If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter  originally published April 2016

    Author: Willeke Van Eeckhoutte - 30 Nov 2017

  • Photo for article: Accessible Parking Spaces

    Accessible Parking Spaces

    This week from the MS & Me archive, Declan Groeger shares his frustrations about accessible parking spaces used by people NOT living with a disability My 'MS Roller Coaster Ride' officially began in 1988. You know what I mean when I refer to it as a roller coaster ride- there are so many ups and downs and the speed of the ups is never as fast as the speed of the downs. I have grudgingly come to accept, and for the most part live within, my limitations. I have set and reset my targets and my dreams as my abilities have changed. As I have said previously, I’ve accepted the limitations that MS has placed on me but what I cannot accept is the limitations I face as a result of the actions of my fellow citizens. I refer to those thoughtless and reckless people who abuse 'Designated Disabled Parking Spaces'. I wish I could explain the importance of designated parking spaces in a few words but for those who understand no explanation is necessary and for those who don’t understand or care, no explanation is possible. Accessibility is a right, not a privilege. I abhor inaccessibility whilst accepting that it is a fact of life for a variety of reasons (poor design, lack of thought). It should be suffice to say that appropriate parking facilities are a vital element in the social inclusion of people with disabilities.  Who does it? Why do they do it? I have my theories and here is a number of different types of abuser who live among us: The Reckless Abuser – He/she simply doesn’t care what difficulties are caused by his/her actions The Thoughtless Abuser – He/she just doesn’t consider the difficulties caused by his/her actions. These people are members of the “Just a minute brigade!”. The System Abuser – gets a badge fraudulently and is, in my opinion, the worst offender. Family and friends who treat the badge as a perk and use it when the registered person is not present.  What can be done to mitigate the problem?  1. The badges must be checked.Traffic wardens, Gardaí and private parking security must be made aware that we will not be embarrassed if our badges are checked.  2. The cards should be confiscated, if used fraudulently. (Subject to legal constraints). 3. There must be strict adherence to the qualifying criteria before a badge is issued.  4. Appeal to the better nature of people who don’t need a badge anymore, but who find it convenient, not to use them (good luck with that!). 5. Hit people where it hurts- their pocket. In October 2015 the city of San Diego increased the fine for misuse of parking permits to $740. Closer to home in Ennis, Judge Patrick Durcan fined a driver €500 and banned her from driving for 6 months. In reference to the case, Conor Faughnan of AA Roadwatch referred to misuse of disabled parking spaces as “an obnoxious thing to do”. Have you any thoughts on this issue? Further reading Information on Disabled Person's Parking Card please visit Citizens Information DisabledGo facilitate comments and photographs on accessibility in Ireland & UK on Twitter as does MobilityMojo I have my own blog able2access.wordpress.com where I highlight accessibility matters. Originally published February 2016

    Author: Declan Groeger - 23 Nov 2017

  • Photo for article: Changes Afoot at MS & Me

    Changes Afoot at MS & Me

    The faces of the MS & Me blog are changing. Trevis Gleason gives his thoughts on the difficulties that change can bring but also the benefits of adapting to different times. Multiple sclerosis can be overwhelming… and not in the good way.  We at the MS & Me blog are overwhelmed right now… but in the good way. Earlier this autumn we put out a call for writers as we close out our fourth year in existence and look ahead. In those four years, your blog (we see this space not belonging to the writers alone; we are a blog community, so it belongs to us all) has been recognised domestically and abroad as being one of the most affecting and poignant health blogs on the web. As for our current cadre of bloggers, we’ve had our share of personal successes (and challenges) as well. We have become parents and grandparents (as well as aunties or uncles multiple times), we’ve changed jobs, advanced in our careers, or got our first jobs back after having to leave previous employment because of MS. We’ve published books, produced films, been recognized for our personal blogs, and brought our personal works as well as the work of MS Ireland to a European and international audience. For some our MS has stabilised, for others it has advanced. For the past four years we have shared our thoughts, our reactions, our hopes, fears, and dreams with you. It’s been a fair bit of work; trying to fit it all in sometimes. But it’s been important work and we think living with MS might just be a little bit easier because of the space we have created within our blog community. And why do I now say that we’re overwhelmed? Because so many have seen the results and have applied to join this “MS & Me 2.0” as we expand. Four years ago we felt ourselves lucky to find nine people who might be willing to jump aboard as voluntary crew on this ship of discovery. We, frankly, weren’t sure about our course and we were surely ingenuous as to a possible destination. What we have learned is that our vessel is making waves in the form of an international conversation and we need a few more hands on deck to continue our voyage. As we spend the next few weeks reviewing submissions (well over a score this time), know that the process is to be transparent and the pitch level. Our current bloggers who would like to stay on have been asked to submit their intent the same way that newcomers have. It’s not a comfortable process for any of us – growth seldom is – but it’s an exciting time. As the year draws to a close and we put together our new team, we’ll bring back a few posts that you may have missed, some particularly pertinent writings and perhaps a laugh or two. We look forward to introducing you to our team in the New Year and sharing our views of living (and living with MS) through several new and newly polished lenses. It’s a season of celebration and change. We celebrate what MS & Me has been and we celebrate the changes currently underway… but it’s still a bit overwhelming. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning books, Chef Interrupted, and Dingle Dinners are 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 Gleason - 17 Nov 2017

  • Photo for article: Brain Blips

    Brain Blips

    This week Aoife Kirwan discusses 'brain blips' Cognitive blips or brain blips are the second most irritating MS related issue that I deal with. I am 29 years old and rely on lists, diaries, reminders and alarms to make sure I don’t forget to do things. This really bothers me from time to time. My brain doesn’t always agree to keep up with the pace of my lifestyle. I like to be busy, but my brain does not! My cognitive issues seem to go hand in hand with fatigue, so if I manage one, I seem to manage the other. I often wonder whether the fatigue is causing my cognitive issues or whether it’s the other way around?? I do find when I get tired, my brain slows down, I begin doing things absentmindedly, I lose my train of thought and have trouble finding the right word. I also misplace things- my phone, my car keys, my car! I have often parked somewhere and after a few hours shopping forgotten what level/location!! There are times that my brain blips have caused endless laughs. One morning I was quietly getting ready for work, I was running a few minutes late and trying to get ready at a faster pace than my brain could manage. After all the fussing, getting bags packed, lunch made, checking the iron was off and door was locked, I got out to the car and was on my way to work when I realised - I had forgotten to put my skirt on. It's a situation where you could laugh or cry, but I opt to laugh at these things. Something that bugs me, and I can't seem to laugh at is when I go to Google something, then look blankly at the screen as I try to remember what it was that prompted me to open Google in the first place. It was my focus seconds ago and then nothing, it's gone. Similarly I can walk into a room and completely forget why I went in there in the first place. Losing my train of thought or having difficulty finding my words is particularly irritating during an argument or debate. I hate when I have a strong and valid point to make and when an opening to share my pearls of wisdom presents itself - it's gone, no words come out and victory escapes me once again. Later I think of what I was going to say that would have swayed things in my direction, but what good is later! I have learned to know my limitations and accept them. I know that I hit a wall around 3pm for about two hours. I try to work around this, I use this time to do less complicated tasks and go back to more complex jobs once I have come out of that slump. Making sure I am well rested and hydrated is very important too. As I say, lists, diaries, alarms and reminders - while I complain they are indeed helpful tools to make sure I stay on top of things. Whether someone lives with MS or not, we all have blips now and then and that's okay. Do any of you have any useful tips to help with memory or cognition?

    Author: Aoife Kirwan - 09 Nov 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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