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

  • Photo for article: Father's Day

    Father's Day

    Sunday 17th is Father’s Day and this week Keith Byrne describes the joys of being a Dad. Read on for how he’s balancing life tasks so he and his family stay healthy and how being open to challenges helps him build resilience while living with MS. Stress can be the catalyst for the onset of many illnesses. Coping with a full-time job, a young baby and a chronic illness all at once can certainly be described as stressful. This is never easy. Particularly when they can all be so demanding at the same time. I'm learning to take a different perspective so the demands don’t take over. Being a father to a 17-month-old can often mean restless nights, followed by a long day in the office then home to spend some (brief but) quality time with my son before his bedtime. Only to do it all over again tomorrow. It sounds tough and I suppose at times it is. At least if you apply effort into your work you might get the occasional thanks. Not so with a baby. Bringing things into perspective, the morning and evening times when I get to hang out with Oliver and see him showing off what he's learned is beyond comparison. His latest feat comes when asked “What does the lion say?” and he answers with a big "ROAR!". I couldn't be prouder! I find routine can be the best way to keep stress levels to a minimum. Time is such a precious commodity that it needs to be used wisely. I have yet to master this skill but if you have any tips please do share in the comments section below. Regimented tasks in our house, such as the weekly shop or cleaning floors each night before bed, are of given almost critical importance. And then stress levels rise when routine is broken. Actually, it's helpful just to take a step back, realise that it's not the end of the world and take another view. Once he's happy and healthy, that's the priority. I need make sure his Daddy is happy and healthy too. MS can bring with it pain, fatigue, uncertainty and many other symptoms. Because of this I've started to challenge myself more. I'm almost putting myself in stressful situations so I can learn to cope with it better. Whereas before diagnosis I would have avoided them at all cost. I plan on running the Dublin Half-Marathon in September and now I've also signed up for the Full Dublin marathon in October. For me staying active and eating healthy are just as important as medication when it comes to tackling MS.  Keeping a determined and positive mindset will definitely give me a better chance of staying relapse free. It should also help me sustain a happy and healthy lifestyle. Although with MS this is never guaranteed. Those thankless and sleepless nights, were you just feel you can't do anything right for your child, can be testing. Luckily those nights have been few and far between. But they can have a knock-on effect and leave me exhausted throughout the days that follow. Still, those sleepless nights can lead into playful days. Those rosy red cheeks and teary eyes have led to big white teeth. And those cries of frustration at him not being able to say what he wants led to a voice that now says "Dad"; and that means more to me than thanks ever could. I wish every MS Dad a great Father’s Day and look forward to reading your comments. Keith has set up a charity page for the marathon for anyone who would like to support him as he raises funds for MS Ireland: https://give.everydayhero.com/ie/half-marathon-for-ms  Keith also writes a blog where he shares on his life: https://keifib.wordpress.com/

    Author: Keith Byrne - 14 Jun 2018

  • Photo for article: The Hardest Thing

    The Hardest Thing

    Next week, 11th to the 17th June, is Carer’s Week in Ireland. We’re delighted to have Guest Blogger Gemma Donnelly Cox writing about being a Carer and how she balances life in the ‘here and now’ while also planning for the future. Caring, for me, is about enabling and empowering my husband to live the life of his choosing to his highest potential. Simple, eh? I’m not so sure.  Over and over again, I am torn between goals that, at times, conflict. And I’ll bet this happens to every carer; maybe not the same goals but tension nevertheless. Currently, the ones that preoccupy me have to do with timing and with attitude. When I say timing, I mean whether to focus on the present or the future. A whole lot of enabling and empowering is about making the most of every day; doing today’s work today.  Right now, I’m typing this blog and Alexis, my husband, who is quadriplegic with progressive MS, is using voice control software to work on his computer.  Our son has just left the house to go bouldering at the climbing gym up the road.  We are all enjoying the here and now this afternoon. Much of the time, however, I feel as though my focus is planning for the future, leaving little room for the present. So much thought goes into what I know lies ahead and also to planning for the unknowns.  What if Alexis’ voice starts to weaken further and he can’t use voice control software? Should he be using eye control now, just in case? But what if his eyesight starts to fail? Worries about the future can rob you of ‘the now’ as you flail around trying to prepare for what might emerge.  But if you only stay in ‘the now’, you could very well end up not being ready when one of these MS issues suddenly rears its head.  Right up there with timing is attitude.  It seems to me that so much of what is joyous in life is about knowing when things are good, celebrating them and being grateful for them.  Like right now blogging about how it feels to be a carer.  A lot of the time, however, gratitude for the good things can be in tension with putting mental energy into staying vigilant and being ready to advocate. For example, Alexis was recently invited to a dinner with people who know a lot about MS. I was looking forward to going with him and slacked up on my usual advocacy of making his requirements clear to the hosts. I figured that people in the know would get it right. Wrong. The hosts invited a quadriplegic guest seated in a large wheelchair to a venue where the tables were way too low for his chair. The path to the (too small) space at a table- in the middle of a room, full of seated diners- was impossibly narrow. It does not have to be like that folks! It’s hard to be grateful for a nice night out when your husband can’t reach the table and your advocating would have made it different. When I feel I’m getting the balance right managing the tension between timing and attitude, I am far happier and more confident in my Carer role. But before I sign off, I’d like to add one more tension, the one that can arise between caring and self-care.  During Carer’s Week, we’re reminded that Superwomen and Supermen stay sharper when they take care of themselves.  I was reminded of this back in the autumn when I was away for the weekend by myself (a super duper self-care step) and I came across a young couple in their 20s.  The carer in the partnership was a real Wonder Woman.  But she was wrecked tired, more tired than I remember being at her age and stage. I had time on my hands and tried to help out.  She knew I was up to the job but she simply couldn’t let herself stop. Carers, none of us last forever but if you want to be in for the long haul and really make a difference for your loved one, you’ve got to take care of yourself too. For many carers, I guess that’s the hardest thing. Gemma and Alexis Donnelly live in Dublin with their son Finn and Labrador Retriever, Elmo.  In 2016, Alexis joined the Scientific Steering Committee of the Progressive MS Alliance.  His carers have supported him to fulfil his role in the Alliance. For more on the Progressive MS Alliance and the exceptional work that it does in pursuit of its aim to understand and overcome some of the biggest barriers to treatment development for progressive MS, see www.progressivemsalliance.org

    Author: Gemma Donnelly Cox - 07 Jun 2018

  • Photo for article: Working & MS

    Working & MS

    This week Niamh McCarron shares her experience of having MS and working. Read on for her story of working and striving to stay professionally active and financially secure. As I write this blog post I am on my way to a conference for my day job. This is a good example of how my work and MS life are intertwined.  I am often “robbing Peter to pay Paul” timewise, energy-wise and pain-wise. The truth is, most people have to work, there are very few of us who have the resources to pack it all in and retire at 30 or 40. For people with MS, I think most of us plan (and hope) to work for as long as we can. Of course as illness progresses, this choice can be taken away from us. I am writing this post from the fortunate position of still being well enough to work,. I’ve blogged about my MS Fears before. One of the things I am afraid of is having to stop working. I’ve been working in the same company for more than a decade and have built a solid career for myself. I work hard, I enjoy what I do and I am part of a great team of people. Giving up work would have a massive impact on my household financially, but it would also take away my independence and part of my social life too. I’ve had to make some adjustments over the years and I’ve occasionally had to ask work to accommodate me where possible, and reasonable, to do so. Because I was diagnosed while working here, my colleagues have known about my MS as long as I have. I think that has helped. I didn’t have to tell them about it, it just became part of me and my life. I understand why others might feel that they can’t or don’t want to disclose their MS to their workplace. It’s a very personal choice to make. For me it would have been an extra layer of pressure to deal with, so I am glad they all know. Plus I am a blabber mouth and have blogs all over the place. It’s not exactly something I can hide at this stage! In 2016 MS Ireland launched a set of Employment Resources to support people with MS and their employers. I encourage people to have a read through them, particularly if you are considering disclosing your MS at work. There are some great tips from others with MS as well as practical advice on what you can reasonably expect from your employer (and what an employer can do in terms of reasonable accommodation for a member of staff with MS). I also think it’s great to highlight that so many of us are working away in our chosen jobs. MS doesn’t always mean the end of life as we know it. I plan to still be here in the next 10 years, hitting the snooze button for “just 2 more minutes” and dashing about the place trying to juggle work, home and other commitments. I’m determined to try, for as long as possible!   Links to Employment resources: https://www.ms-society.ie/blog-articles/2015-launch-of-employment-resources  Working With MS - Employment Resource for People With Multiple Sclerosis Working Out MS in the Workplace - A Practical Toolkit for Employers Multiple Sclerosis and Employment - Facts and Figures

    Author: Niamh McCarron - 31 May 2018

  • Photo for article: Kiss Goodbye To MS

    Kiss Goodbye To MS

    Have you joined the Kiss Goodbye to MS squad? This week Grace Kavanagh tells us why she joins in with thousands of others for the massive global campaign. It’s all about the Kiss! MS is a difficult disease to live with. It's so unpredictable and is often described as an “invisible” illness because so many symptoms are felt by the person but not seen by others. As a result, having MS can be really isolating. We can’t always take part in activities or outings because just getting out of bed is a herculean effort. We’re not rude or antisocial - just exhausted, struggling or in pain. This isn’t the same for everyone but that sense of isolation can hit any of us. When I was diagnosed with MS 12 years ago there was no talk of a cure and with just four disease modifying therapies (DMTs). We’ve come a long way since then with twelve (if not more) treatment options now available. There are advances in biotechnology being made every day. While there is no cure, I like to think we’re getting closer. I see it as my job to keep myself functioning and as well as possible until we do. That is what Kiss Goodbye To MS is all about. It is a fun, global campaign to raise awareness and funds for vital research and to support people living with MS. The funds raised make a huge difference to people like me living with MS. My weekly yoga class means I have a reason to get out and mix with others and don’t have to spend the day talking to my cat! And it’s good exercise! A person’s tolerance to a drug and its efficacy can change over time which make advances and new treatments so important. Personally, I have worked my way through four of the drug options on my MS journey. I’m doing okay at the moment but am always on the lookout for what would be of greater benefit to me. Any new developments from MS research could have huge impact on my life and the lives of thousands of others. MS research is not restricted to pharmaceutical treatment. MS Ireland also funds research projects into living well with MS including projects around physiotherapy and mindfulness being carried out in University of Limerick. I’m a believer in physiotherapy and mindfulness - they help keep me moving, flexible and successfully get through every day So how can you get involved? You can decide how much time or effort you can spare- know that everything you do get involved with helps and will make a huge difference to the MS community. You can wear red, take a selfie to share on social media using hashtag #kissgoodbyetoms, do a dare or organise an event to raise funds. Visit MS Ireland’s campaign website – www.kissgoodbyetoms.ie for more information on the campaign and current areas of research funding. You can even text KISS to 50300 to donate €4 - how easy is that!? It is really humbling to see so many people from across the world joining together to help in the fight against MS. For such an illness that can be so isolating, that means so much to all of us with MS! Above all the Kiss campaign stands for hope. We are better together and together we can find a cure. 

    Author: Grace Kavanagh - 24 May 2018

  • Photo for article: Why MS Is My Secret

    Why MS Is My Secret

    This week the MS and Me AnonMS blogger, a health care professional, shares with us an insider’s perspective on disclosure. Does disclosing MS status lead to the condition overshadowing all other aspects of a person’s life and reduce them down to a diagnosis? There are times when I am tempted to mention it. Particularly when I’m having a bad day and someone in work is complaining about their back pain or their thyroid issues or their respiratory problem. I can have a brief fleeting fantasy of myself smiling and nodding and chipping in with “Well, with my multiple sclerosis…”. That’s as far as the fantasy ever goes though. Because after that bombshell I know there would be shocked faces, stammered words and the overwhelming sense of panic that I’ve dropped the explosive and can’t undo the damage. It’s not that I feel their health issues are not serious or not problematic. They just all seem so much safer and palatable to discuss over morning coffee. So, I make sympathetic noises and say nothing. I work in healthcare, so I can see the health system from both perspectives. My colleagues are wonderful, kind and caring people but the problem with working in healthcare is that our knowledge of a condition can be best understood by that sad case study or this complex patient. Our vision is often distorted by our circumstances. We tend to see people at their lowest point and on their worst day, when staying at home isn’t an option and forget about the many other days when they were coping and managing just fine. Worst case scenarios tend to overshadow the “living well” in our minds. This is problematic for me because, were I to tell anyone in work about my diagnosis, I know their understanding would be coloured by a previous interaction or difficult discharge that may have absolutely no bearing on my circumstances. Yet this will be their most memorable reference and example of MS. I know they would paint my outlook with the same brush whether they realise it or not. People with MS are still very misunderstood and pitied. It can have the ability to overshadow all other aspects of a person’s life and reduce them down to a diagnosis. I have seen people rebranded as sad anecdotes and cautionary tales. I don’t want that to happen to me. I am generally not someone who wallows in self-pity or spends time wishing that things could have turned out differently. My diagnosis gave me the drive to do the things and see the places I had been putting off. The next relapse could be closer than I think and I don’t want to look back and wish “if only I had…”. If people find out I have MS I want them to be surprised. I want them to have had the opportunity to see me, without the distraction of MS, as someone who achieved a lot and was a good colleague or friend. I want people to see me without those two letters blocking their view.

    Author: MS & Me AnonMS Blogger - 17 May 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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