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

  • Photo for article: MS & Me in 2019

    MS & Me in 2019

    This New Year, the MS and Me team will bring you more of the things you love as well as a few things you didn’t know you wanted. As we close the third week of 2019, it’s probably time to sweep “Happy New Year” away for another 11½ months. That said, we’d like to take this opportunity to let you know what you might expect from your MS blog this year. First, we wave a grateful goodbye to one of our original blog team, Helen. We wish her all the best as she continues on a career path she was able to take-up again in 2018. Her thoughtful posts, such as the very popular MS & the 2019 Budget, will be missed as much as her positive yet realistic outlook on living with multiple sclerosis. Good luck, Helen! The rest of the MS & Me blog team will look the same for the coming year with some additional guests. The blog itself (as well as the MS Ireland webpage), however, may look different by the end of the year. We are undertaking a long-awaited rework of the website and will take advantage of the opportunity to make the MS & Me blog easier to find, navigate, read and reply. We can’t say exactly when it will happen but, suffice it to say from the prototypes we’ve seen, when it does change, you’ll know! This year we’ve decided to expand on a popular feature we ran a couple of years back. Most months, beginning in February, we will have two bloggers – one man and one woman – co-write a piece on a topic which may have different takes depending on the person with MS’s sex. We’re calling the series “He said – She said”. Topics are set to include such hot buttons as dating, romance, having children after diagnosis, finances and more. We hope you enjoy and engage with our bloggers on these interesting topics viewed from different perspectives. We’re also going to delve into some of the “tough stuff” this year. We all grieve losses in this life. With MS we seem to have to go through some form of the grieving process every time we lose something else to the disease. We’ll have a series of blogs on the stages of grief for you this year as well. We’ll highlight some of the major MS events happening in Ireland and around the world as well as sharing our tips and thoughts of living your best life with this damnable disease along for the ride. The editorial team of MS & Me hope that you’ll enjoy the topics we’ve set out for the year. The cadre of bloggers you’ve come to read hope that you’ll continue to comment, share, and discuss the subjects with your family and friends. Knowledge is, after all, power. And the more of our allies who have the knowledge, the more power we as an MS community will have. Wishing you and your family the best of health. Cheers

    Author: Trevis Gleason - 17 Jan 2019

  • Photo for article: New Year's Resolution

    New Year's Resolution

    At the start of New Year 2019, Declan Groeger shares with us his plans for the year ahead. Read on for a plan of action we can all adapt to our own resolutions.   2019 is a new year; a year full of hopes and fears, a year full of aspirations and dreams and a year full of good intentions.  But it is also a year that, without proper planning, will be filled with disappointments. John Heywood, an English playwright better known for phrases that are embedded in our psyche, is credited with the saying “Rome wasn’t built in a day”. This was modernised to the phrase “softly-softly-catchy-monkey” by Queen Victoria. Loosely translated, both these phrases mean that patience is important. The essential ingredients for success are realism, focus, planning and patience; each ingredient being of equal importance. Another trite adage alerts us to the importance of planning “By failing to prepare you are preparing to fail”, Benjamin Franklin. Realism is important for everyone but even more so for people living with Multiple Sclerosis; we must acknowledge our limitations and plan accordingly. To my way of thinking there is no point in targeting a climb to the summit of Mount Everest without setting a schedule of lesser achievements and waypoints on the journey. Focus is equally important. I find that maintaining focus for a long-term project can be difficult and to that end, I recommend the ‘buddy system’. Confide in someone; share your resolution and accept help and encouragement from your confidante. Write it down; having a goal in writing somehow makes it more real. Planning is essential and this ingredient incorporates patience. Antoine de Saint-Exupéry once said, "A goal without a plan is just a wish". Some goals seem much more difficult without intermediate targets and for me the inclusion of these waypoints make the challenge seem less onerous and more achievable; softly softly catchy monkey! A word of warning- planning should not be used as an excuse to procrastinate. Planning is essential but procrastination is the death knell for many good intentions. I’m only making one New Year resolution this year. In past years I would make a list and start off the New Year with the best of intentions and ultimately most, if not all, fell by the wayside. Time has passed and now more than 30 years after my diagnosis I have learned to be more realistic. I make one resolution and try to do it well. Attempting to do too much is foolish and this is true in any walk of life. Do less but do it well. My New Year resolution is to be kinder to myself. Why that one you might ask? The answer is simple; I haven’t been very kind to me and I need to be. What New Year Resolution have you adopted for 2019?  

    Author: Declan Groeger - 10 Jan 2019

  • Photo for article: The Most Wonderful (and Difficult) Time of Year

    The Most Wonderful (and Difficult) Time of Year

    In the throes of the Christmas Season, Niall McGahon delves in his experience of MS and shares with us how he deals with the uncertainty by keeping things in the moment, in the day. Read on to calm…. I am forever amazed at how the small things that you take for granted when younger have such a massive impact as you get older. “The evenings will soon be on the turn….” is a saying from my Dad when I was growing up (and still is for that matter!). It meant one of two things: the evenings would be getting shorter or they were about to get even longer! I loved the thought of the latter as it meant come March, the evenings would be longer, school would nearly be over and golf was the only thing I had on my menu! This has changed over the years, but my core excitement of the longer evenings has not changed one little bit. Warmth returns, growth begins again and last Spring (2017) was so very special-  we welcomed our first child. This only confirmed for me that Spring truly is the most wonderful time of the year. Life regenerates and the cycle starts again, fresh growth appears in the trees and the bright colours are abundant in the sky. As the season turns, I look to Spring because it is quite the opposite of what I am now facing in my health. There is little regeneration and the cycle is not restarting. If anything, its quite the opposite and we are essentially trying to stop MS dead in its tracks; stop it so that I retain function and stay well.  This is a particularly difficult time of year for me because it was 4 years ago this month that I found out that I had MS and my life was changed forever. Now, I am living life from day to day, week to week, month by month.  Staying in the moment is welcome. However, not knowing how I am going to be when I wake up in the morning can impact greatly on the day and night I have. It can also have an impact on those around me- I am difficult to decipher and who knows what version of Niall they are going to get on any given day. On some days, I am nothing short of a pain in the ass. I try and catch myself but…thankfully, I have a massively supportive family near and far, a beautiful home, great friends and a good job. When I do wake up in pain (most days lately) I know its part and parcel of what I’ve got to deal with, difficult as it may be. Little by little, I am getting better at being kind to myself. I keep it simple. Daily, I have one of two choices to make- I can either have the outlook of Springtime, where the light is bright, where there’s warmth and life is in abundance or I can close my mind and let the winter darkness come over me. Yes, it is a difficult time of the year but I choose to use my Spring outlook and grasp whatever life has in store…no matter what way the wind blows this winter.  

    Author: Niall McGahon - 13 Dec 2018

  • Photo for article: Inclusion Is For Everybody

    Inclusion Is For Everybody

    This week Grace Kavanagh writes about what the International Day of People With Disabilities means to her and what we as individuals understand about living with a disability.  I’ll forgive you if you weren’t aware that there was such a thing as International Day of People With Disabilities. I wasn’t either before some research. It is an initiative set up by the UN in 1992 to promote understanding of disability issues and to raise support for those with disabilities to enable them to participate equally in society.  It is held yearly on December 3rd and the theme for this year is “Inclusion is for everybody”. The day is recognised at the UN headquarters in New York with organisations and groups around the world encouraged to hold their own events. I love the idea of social equality but think in reality we have a long way to go. Raising awareness is one thing but raising understanding and empathy is quite another and this is where I think the focus should be.   So what do I as a person with disability think the International Day of People With Disabilities should include? I don’t think any one person can understand all the challenges people with differing disabilities face and I certainly can’t speak for everyone. I do however think that we all need to think a bit more about other people and try not to be entirely caught up in our own worlds. We have all been guilty of unknowingly causing issues for others by our actions so here are some things to consider in our everyday lives that might have an impact on people with disabilities. ● Viewing things from the perspective of the person with a disability would help us all to see how our actions can impede others. It could also help us to be less irritated or frustrated when we understand the challenges the other person is facing.  ● Experiences that give an insight into the life of someone with a disability can really boost understanding. For example the MSunderstood cafe gives people the opportunity to view the world from the perspective of someone living with MS. I’ll be sending my husband when it comes back to Dublin!  ● In a similar way, I know of a charity for the visually impaired that requires employees to spend time wearing glasses that distort vision and use a wheelchair so they understand the difficulties people they work with may have.  ● I taught computing to a lady with hearing difficulties. She had a sign language interpreter who enabled her to be an equal participant in the class. I learnt to address my comments to her and not her interpreter, just as I would with any other member of the class. ● Think before you park your car! Parking on pavements or up on the kerb leaves no safe route for people in wheelchairs, while parking in disabled bays when you don’t need to means a person with a disability can’t use the facility. ● Don’t get me started on the pavements in Dublin! They are a hazard to everyone but in particular those with mobility issues. Try not to add to the problem by leaving obstructions like bins on the path. Disabilities aren’t always visible. You don’t know what someone else is coping with just by looking at them. They could be living with chronic pain but look fine. Try not to judge what you don’t know.  Check out Grace’s blog, www.mycrazymslife.com for her perspective on living with multiple sclerosis.  Join in the activities of the UN International Day of People With Disabilities click here   

    Author: Grace Kavanagh - 03 Dec 2018

  • Photo for article: MS Explored

    MS Explored

    This week Aoife Kirwan writes about the upcoming event for Young People with MS on 29th November 2018 (6pm-8pm) in the Davenport Hotel, Dublin. Register for the event here  For almost eight years I have been living with the knowledge that I have MS. My diagnosis came at a time when I was just getting started in adult life. Years of education were behind me and I was in the final months of my degree. Prior to my diagnosis, I had a very clear vision of what I wanted in life, what I wanted to do, to be, to become. This moment in time changed everything for me. The future I had envisioned for myself was now unclear.  The main symptom that I had was optic neuritis in my right eye which left me with just about 2% vision in that eye. I had been working towards becoming a secondary school art teacher. I felt like I had to say goodbye to that idea, as I didn’t feel it would be a secure enough given the issue I had with my sight. I felt like I was at a crossroads. It was still early enough to change my mind about the best path forward but that didn’t make it easy.  The promises that I had made myself were destined to remain unfulfilled. I feared what was to come because for years I had been looking in one direction and this diagnosis forced me to look around. It made me uncomfortable. The way I felt about myself and the way I felt the world saw me, changed.  My sense of identity was shaken. I didn’t think a support group would be my kind of thing. I didn’t like the diagnosis; I was all about trying to be positive and felt that the niggling negative thoughts might grow stronger if I saw other people who were more seriously disabled by MS than me. What I didn’t realise then was that I needed connection. To speak to others my age who were living with MS. I needed information that was relevant to me, support around decisions that we often come up against in early adult life like education, relationships, self-acceptance.  Early adult life sees people lay the foundation blocks for their future and I needed support with making my foundation solid.   Next Thursday, November 29th MS Ireland, in collaboration with Novartis, is hosting MS Explored, an information and support event for young people living with multiple sclerosis (18-35). Speakers include Moira Tzitzika who will talk about Relationships and Intimacy. Moira has a PhD in Psychology and specialises in Disability Counselling and Sexual Medicine at the European Society of Sexual Medicine. Psychologist Karen Belshaw, founder of Stress Management Ireland, will speak on Mental Resilience and past-president of the Union of Students Ireland, Michael Kerrigan will show us Road-mapping for Success.   This event will take place in the Davenport Hotel, Dublin from 6-8pm.  A live stream will be available for those who are not able to attend in person. Students unions around the country have been incredibly helpful in organising on-campus hubs where the live stream will be shown. Questions for the speakers can be sent in by direct messaging our social media platforms. The event is free to attend but please register using the following link: https://www.eventbrite.ie/e/ms-explored-meeting-tickets-52707199653 This is a great opportunity for young people living with MS to meet with their community. Connecting with others who are at a similar stage of life and navigating similar issues can be a very empowering experience and I look forward to seeing you there. 

    Author: Aoife Kirwan - 22 Nov 2018

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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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