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

  • Photo for article: Launch of EUPATI Toolkit

    Launch of EUPATI Toolkit

    This week Joan Jordan looks at the EUPATI Toolkit, breaking down the jargon and how we can use information for better decision-making and better health. Back in the pre-“YouTube” eighties, I learned how to change a plug. It’s about the only thing I remember from being a Girl Guide - well that and how blue my knees turned the day we marched in the perishing conditions of the Saint Patrick’s Day Parade!. Since then, any electrical device that goes on the blink in my house gets its fuse checked and its wires inspected… quick sticks!!! After that, I put down the Phillips screwdriver and call in the experts. It is empowering for me to know that I can manage the simple stuff by myself. Of course, I would never attempt a solo run on a big electrical job. I do think however that it’s important for me to understand in advance what I am getting done and why.  I try to take the same approach when managing my MS. Since being diagnosed in 2010, I have picked up a few “tricks of the trade” on my journey. I can read the warning signs and so be better prepared when a relapse is imminent. I can take steps to minimise the impact on me and my family. I now know that a 30 minute nap helps to “reboot me” when I feel that fatigue has rendered me unproductive and foggy. I figured some of these things out by myself but the majority have come from observing how other MSers manage their symptoms in order to get the best out of life with a chronic illness. I still need help when it comes to medication. When I read about all the therapies currently available to me, I get overwhelmed and confused. New studies excite and baffle me in equal measure! Finding the right medication has a huge effect on my quality of life and I need guidance to break medical jargon down into plain, meaningful English. I need to know what I can do to help my own condition and much like the big electrical jobs, I need to understand what I am getting done to my body and why. The EUPATI Toolbox on Medicines Research and Development is a 'go-to' resource for patients who want to understand how new medicines are researched and developed, as well as how they can get involved in this process. Launched on 27 January 2016, the EUPATI Toolbox has articles, factsheets, slides, videos and infographics on over 50 topics related to medicines research and development and patient involvement. It can be used for self-learning and personal study, but it can also be used for training and it has been released under a creative commons license in the hope that patients will share this information with others, and adapt it to suit the education needs of their communities. I am excited about the EUPATI Toolbox as it is providing me with some of the missing pieces I need to be better informed about my own health. From now on, when I come across a medical term I don’t understand, I will be taking a look a www.eupati.eu to fill myself in on what it means. I urge you to check it out and see what you think. Baden Powell had it right when he said that it pays to “Be Prepared". Watch NOW!

    Author: Joan Jordan - 28 Jan 2016

  • Photo for article: The Bad Days

    The Bad Days

    Following up on Emma’s post last week about the good days, I would like to invite you to what thus far was not one of my better days since being diagnosed with MS. Like good days, bad days are often made of compounding issues; as time moves on and it seems as if Murphy’s Law really has it in for you. Getting out of its grips can be done by crawling under your duvet and hiding, providing you don’t trip on a loose-fitting piece of carpet on your way to bed first!. I still feel shivers running down my spine when I think back on the day when I was diagnosed with a superbug called Clostridium Difficile. It knocked me when I was told that I had been steadily getting worse due to something only elderly people, or only people who take a lot of antibiotics, contract. The fact was, I was only 35 years old, and I never used antibiotics. What I did have, however, was one very wonky immune system that messed up my central nervous system. It also tricked my medical team as they never suspected that a superbug could be the cause of why I was near that dark, mouldy and wet six-feet-under we only want to visit when we’re old and grey. Once the shock had settled somewhat, I realised that earlier that day, I had brushed off my Mum on the phone by saying that a nurse was by my bedside that moment and that I would call her back later. I didn’t.  And that nurse? She wasn’t there either. Overnight, my system had slowly gone into lockdown. I had no energy left to talk, let alone give an overview of what was happening. At the time of my Mum calling me, doctors didn’t know yet that a superbug was the reason. A few hours later I was hastily taken into surgery, with two doctors on each arm trying to find a suitable vein. At that stage, my veins had learned a few vanishing acts when they’re near doctors or nurses. I later joked that having two doctors on every arm was a dream come true, even when it was in dire circumstances!. I was put in an isolation room, and my consultant later walked in and said, “You are quite ill, but we will take very good care of you”. It suddenly hit me that morning could have been the last time my Mum and I would speak to each other. When I was finally able to return to work weeks later, I felt fabulous. No doubt a placebo-effect of some sort had taken place, and I felt more alive than I ever had. It didn’t last though, as eventually MS took over again. Like Emma learned from her hellish symptoms, I similarly learned to focus on what is in front of me: my future, better medication on the horizon and despite being told that C. Diff can return, simply getting on with life. Every moment since, I call bad days ‘less good days’, as the worst day has happened already and nothing has felt more intense or frightening since. For those less good days, which thankfully don’t seem to happen a lot, I have some ways of feeling better mentally: Taking a shower Singing along to some of my favourite songs Writing Making coffee or going to Starbucks Reminding myself that it’s OK not to be OK Watching favourite programs Any cranky day now gets discarded pretty fast, as I can’t allow any negativity affecting my days. Even positive excitement sends my eye and facial pain into overdrive. If you see me with a stern facial expression so, please know that I am positively excited inside.  What having a superbug taught me was that life needs to be lived. You can’t hide from it; you need to address it head-on. At the end of the day, even bad days can teach you something worthwhile. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 21 Jan 2016

  • Photo for article: The Good Days

    The Good Days

    Happiness is not the point, it is not the goal; it is a by-product of a multitude of actions. The daily irritants and toxic effects of life with MS can be turned into something phenomenal. A pearl is a terrible beauty. When a tiny grain of sand (or other irritant) gets trapped inside the soft flesh of an oyster, irritating, itching or even poisoning the creature, the oyster gets even closer to the irritant. Not because it is a masochist but because there is work to do. Slowly, the oyster coats the sand in nacre, a shiny substance. Over the years, layer upon layer gets added, building the irritant into a beautiful, shimmering pearl. Today I’m going to tell you about my pearl. What does a good day look like?   I live beside the sea, a long stretch of soft sandy beach that curves around the coast giving the sharp rocks a gentle coating. My nights are short. Well, not so much short as long-and-interrupted as our new addition wakes and looks for cuddles. I’m usually up before 6 a.m, have the compulsory cup of tea, eat breakfast, shower, dress (all accoutrements, food and clothes I’ve left ready the night before) and take a few minutes to read from someone far wiser than I. This piece of prose I hold onto for the day.  It is dark when I leave the house and make my way to the train station towards work. Stepping out into the fresh, cold air and looking up to the stars I am Antaeus. My mind is clear, my body steady and strong- I am grounded. When I’ve prepared, given myself plenty of time to allow for eventualities (nappy change, leg not working, fatigue first thing), the time flows and me with it, a gentle stream of time. My workday is spent doing tasks, engaging with others, sharing laughter and deep conversations, contributing and being useful. Home time is the precious time with my partner, being a good listener, sharing ideas and in the minutes before bedtime I get to read stories of bears, play with colourful toys and show my little girl how joyful life is. This is a good day.  Making a Good Day: Being useful Taking time in the morning to be still (sit with a cup of your favourite, meditate, read)  Eat the right food, take exercise (move whatever you can move) Time with the people I like to be with, who give me joy Don’t stay in the same space if it isn’t working for me Holding on to my standards and values What I do today will effect my tomorrow Gratitude Live in the present Here’s where my (and perhaps yours dear reader) perspective differs from the general public. I think about how my brain has scars but focus on the scans showing very little progression over the years. How my leg has grown stronger the more time I spend in the gym. How what I do today will effect what I can do tomorrow. I do my utmost to research, react and understand my grains of sand. For the last eight years I’ve covered my grains of sand in all the things that go towards making a good day. The mind can make a hell out of heaven and a heaven out of hell. I’ve travelled, read, learned, met new people, speak with medical professionals, hippies (becoming a hippie), having lots of fun and learn every day that life is what it is.  When I wear pearls (artificial), touching them reminds me that no matter how hellish I feel or how bad I think my day is, it will change. To have a pearl on me is a gentle reminder that despite the grains of sand that buried me, I have taken them and turned them into things I can use, to inform and live a good life. To misquote Maya Angelou, I’m a phenomenal woman who daily turns grains of sand into magical pearls. This is a very good day to be alive. Join Emma on Twitter @emmadragon 

    Author: Emma Rogan - 14 Jan 2016

  • Photo for article: Happy 2016 from the MS & Me Blog Team

    Happy 2016 from the MS & Me Blog Team

    *The dawn of 2016 brings a break between literal and figurative storms. We look forward to a new year, a better year and another year of the MS & Me Blog * As 2015 wound itself up the MS & Me Blog team was able – for the first time in its entirety – to gather in Dublin to celebrate our successes and plot our course for the New Year. To have our whole side on the pitch at once was a real joy and you know what we talked about?  YOU! We’ve had very happy successes in the two years that MS & Me has been on the web. Great topics – many suggested by you – and talented writers becoming friends and warriors have made the MS Ireland Blog something special. We want to make it even better…and we have a plan. This year we’ll be branching out and going deeper. Last year’s series on the stages of MS was met with great response. We intend to bring you more (some serial, some occasional) series in 2016. One such series that excites (and frightens) us all is our “MS Passion Pieces”. We’ve asked all of our writers to dig deep into their emotional lockers and present you with their very personal feelings on topics important to our whole community. Declan will present a spirited start to that discussion when he takes on misuse of disabled parking spaces and permits in February. We’ll also feature a few two-sided blogs where themes are examined through both sides of the looking glass. That begins with our next blog posting. Emma and then Willeke will look at “the good days” and “the bad days” of living with MS. We’ll even take on the debate as to whether to take MS disease modifying medications or not. The gloves are off and no multiple sclerosis topic is safe this year. World MS Day 2016’s theme seems very fitting for the year that’s in it for Ireland. “Independence” will be the subject of the year and we intend to explore it from various angles in this year of the centenary. We’ll talk elections and research, the care we deserve and ways to have our voices heard. Helen will even bring “the partners of MS” into the discussion next month. And that’s just the start…  We are very excited for this next chapter and hope you will be as well. Please feel free to share our posts, to comment (anonymously if you like) and to let us know what topics are important to you. MS Ireland have some important events we’ll let you know about in the coming months and we’ll reach beyond our borders to see what MS looks like around the globe. In short, 2016 is our year!  We hope you will join us as we do deep, we go wide and we redouble our efforts to make this the best MS blog – not only in Ireland, but anywhere on the web. Happy New Year from the MS & Me Blog team. It’s going to be a great one. 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 - 07 Jan 2016

  • Photo for article: MS & Me Christmas 2015

    MS & Me Christmas 2015

    “Christmas time, Mistletoe and wine...” the festive season is finally upon us and with that comes the certainty that the New Year is only around the corner. It is that time of year when we look backward and forward at the same time like Janus the Roman God of Beginnings. We look back on the year past with a wide range of emotions- happiness, joy, anger and regret, to mention but a few-  and look forward to the new year with a completely different set, mainly expectation tinged with apprehension. 2015 was the year we celebrated the second anniversary of the MS & Me Blog and what a year it’s been! We published 50 articles during the year covering a wide variety of topics. This was due to a great team working together, each writing about topics they know, understand and are passionate about. Many blogs fail within a very short time and the main reasons are a lack of passion and commitment by the writers. There is no shortage of either passion or commitment by the writing team. The MS & Me blog was created to raise awareness of MS and to open discussion on aspects of MS that may be difficult to talk about. It is written by people with MS about MS and for people with MS. It has been successful; in our first year we were shortlisted for the Blog Awards and in our second year we achieved Silver; what a buzz!  We need to say a massive ‘Thank You’ to our loyal readers because without you MS & Me would have fallen by the wayside and faded into oblivion. Together we are Stronger On behalf of the team I would like to wish every one of our readers a Happy Christmas. May your lives be filled with happiness and joy this Christmas Season and may your spirit and determination remain undiminished in the new year. Work has already started on 2016 and we hope that the articles will be more interesting, engaging and varied. We are a team and we are all proud to be associated with the blog.  Together we are Stronger Are there subjects that we haven’t covered that you would like see? Please feel free to leave a comment or email dianac@ms-society.ie with your suggestions.  

    Author: Declan Groeger - 24 Dec 2015

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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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