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

  • Photo for article: Educational Options

    Educational Options

    To coincide with the Better Options College Fair 2015, Aoife shares with you, her experience as a student with a 'disability'  Study, exams, assignments, referencing, money, first time away from mammy's cooking, these are the usual worries we face as third level students. When you are also handed a diagnosis of MS things can get a little more stressful. This week, to coincide with the Better Options College Fair 2015 I am sharing with you, my experience as a student with a 'disability', and some useful information on colleges and supports that might be of interest to you. Also, check out this website to see more about this wonderful college fair  My diagnosis came in February of my final year of my under-graduate degree. There were months of unexplained symptoms and 'hiccups' in the lead up to the diagnosis. Knowing what I was dealing with, and being able to put a name on it, really helped me. I was finally able to explain what was wrong. I was finally able to put odd symptoms down to something. MS was accountable for my symptoms, they no longer seemed like excuses when looking for extensions or arriving in a little late in the mornings.   I was diagnosed during mid-term, so my three days in hospital came out of my 'home-time'. I was discharged from hospital on Friday and was back in class on Monday morning. My lecturers were not convinced that I should finish out the year. They thought that I should defer a year and give myself time to process and recover. I understood their point, but that wasn't going to work for me. The end was in sight and there was no way I was putting another year between myself and freedom! So I decided to stick with it.  Next stop for me was the college 'access officer'. I made a call and the very friendly access officer said she would make the trip to my campus to have a chat about what supports could be put in place for me, so I could finish continue with my education.  It was wonderful; I was allowed to hire an 'assistant' for 8 college hours per week. I was allowed to choose a fellow student who could help me when I needed, and they were paid for it! Win, win! It made it possible for me to stick with my commitment and finish out what I had spent almost 4 years trying to achieve. On a less formal basis, my lecturers were very accommodating of any changes or suggestions I had to make life easier for myself. For example, I used a dictaphone during tutorials, (with permission from each individual lecturer). This enabled me to listen to the points and comments that were made, so if I forgot or mixed it up, I could listen again for clarification.  About a year after completing that degree, I decided that I wanted to 'future-proof'. At 27 (28 this weekend eek!) I do worry about the future. I worry about how many 'working' years I have ahead. Do I have enough working years left to secure my future? Will I be able to save? Will I have enough (or any) money in my account when a rainy day comes? Will there be more rainy days than working days? Will the qualifications I have now ensure that I can work well into the future? I decided to look at my options to see what I could do. What could I add to my degree to make me more employable, but also leave me in a better position for less physically demanding jobs in the future? Should I completely scrap the first degree and retrain? Would I be able for the work load of a post-grad? Should I do it as a full-time or part time student? How could I continue to follow my dreams, in a practical and realistic way? What was the best way to go about it? The questions in my head were never ending.   I decided that I would look down the career path of counselling and psychotherapy. I looked at various courses in various colleges. Being a full time student was not an option for me, so I decided I would apply to a course that was part-time. I chose the course, the college and I applied. When I was invited for interview, I prepared myself; I bought a new dress and a black blazer to make sure I looked the part. I read and re-read the course and module descriptions so I wouldn't get stuck on any questions they might ask me regarding the course content. I flew through most questions, until they asked me what I had done with my time since finishing my under-grad. I froze for a moment and then explained that I had been diagnosed with MS in the final months of my degree and wanted to take some time off afterwards to settle onto medications and make lifestyle adjustments without the added pressure of study. I didn't go in with the intention of making this disclosure, but it was relevant so I felt it was the right thing to do. When my acceptance letter came I was overjoyed. I called the access office of this college, and the staff were very helpful. They guided me through all the relevant information I needed, and arranged for me to meet with them so we could discuss my particular needs. So all in all, I have only found any college I have attended to be very helpful and supportive.  Supports in colleges can vary, but there are a huge range of supports that can be accessed. Here are just a few: Scribes for exams Loop system Photo copying services, and credits Electronic and Class note-takers Spelling/grammar/punctuation waiver Accessible classrooms One-to-one learning supports Personal Assistants Funding for students with disabilities Extra time in exams Extended deadlines My advice to anyone who might be thinking of starting or continuing with education, GO FOT IT!  Have a look on the college websites, there are pages specifically for students with disabilities, which will give you contact details for the relevant people to get in touch with. Some colleges have great supports in place and it is worth researching to find which might be the best fit for you. Contact the college you are thinking of applying to. Usually they will have an access office or disability services, email them. Ask any questions you might have. Find out if it is the right fit for you. Contact the students union, they will be a great help in guiding you. So if you are thinking of pursuing further education, don't let MS be an obstacle for you. Follow your dreams and make sure you get in touch with the relevant people on your journey through education.  Are you considering going back to college? Have you gone back to college? Do you have any advice or tips to share? Happy Studying! Further reading Here are some links you might find useful: For secondary students who are hoping to make the transition from second to third level education, check this link out.  - This is an alternative admissions scheme. It offers 'reduced points places to school leavers who as a result of having a disability have experienced additional educational challenges in second level education. It is a fantastic alternative to the CAO for anyone meeting the criteria.

    Author: Aoife Kirwan - 26 Nov 2015

  • Photo for article: Reporting Side Effects of Your Medication

    Reporting Side Effects of Your Medication

    I was on my way to pick up the kids from soccer practice the other day when I realised I had forgotten my phone! It was too late to make it back home to retrieve it and as it turned out, I had to wait a while for the final whistle. With my only other option being the car manual, I decided to re-read the package leaflet for my MS meds. Every time I get a new pack, I toss the tiny paper concertina aside and pop the plastic bubble to get my daily dose. I had read the entire thing when I started taking them almost two years ago and to be honest- it was tough going. As the concertina unfolds, I read about what my medication is and what it is used for, what I need to know before I take it and how to take it. I must say that the language is quite clear – considering the subject matter. Now for the crescendo- the side effects…. If you have any hypochondriac tendencies, this is where they come out to play. First the “could be or could become” serious side effects (common – uncommon – rare). Next up is the plain old side effects (very common – common – uncommon – rare – not known). The rest of the booklet details storage information, contents of the pack and other information. In my mind, I’m still stuck on the side effects section. When I get home and back to my beloved internet, I checked out a page mentioned in the leaflet. It’s called the Yellow Card Scheme and it’s for reporting side effects directly in the UK. I thought it was a clever name and it stuck in my mind. You can find it on: The Irish equivalent is: It is important for people to report problems experienced with medicine or medical devices as these are used to identify issues which might not have been previously known about. On balance, I am glad that I revisited the package leaflet for my medication. From now on, I will check the “This leaflet was last revised on” date when I pick up my prescription and re-read if required. Scanning through the known side effects is not pleasant but makes me focus on any health issues I may have been dismissing and prompts me to report them. I also will not forget my phone when I am picking up the kids! How do you inform yourself about the side effects of your medication? Have you ever reported a side effect and how did you do this? I would love to hear from you!

    Author: Joan Jordan - 19 Nov 2015

  • Photo for article: Two Years On...

    Two Years On...

    Superheroes and Witnesses Do you remember what you were doing this time two years ago? I was on the phone introducing myself to an eclectic group of people living in different places around Ireland. From Kerry to Donegal, I cajoled them to write about their lives. We talked topics, backgrounds, experiences and style. Then they started to write. These same people submitted articles that were reviewed, edited and critiqued by an editorial group. It was the start of a quiet revolution, giving people with MS a place to speak their truth to one another and to anyone who has access to the internet on the national Irish MS society website. The plan was implemented and the moulding of this group of strangers began. Over the last two years we have been shaped to become what is now a renowned, prize-winning team- the MS and Me blog team.  To witness positive transformation in another is a joyful, magical experience. For me it started early and has continued to today; I love superheroes on screen and in comics. From the bespectacled, but fierce Diana Prince, who does a light-speed twirl to transform into the Amazon she really is (Wonder Woman), to reserved Clark Kent who disappears into a telephone box to peel off a layer to get to the hero beneath (Superman), their feats are the impossible made possible. We witness their battles with dishonest, malevolent people, ego-maniacs, greedy nemeses and, when they are the backlash of someone’s lack-of-love, we are up-close and personal. Whether they’re battling their inner demons or having personal values challenged and turned up-side-down, we are with them to the end. The writers have been transformed over the last two years. I dare say this is also what has happened to you and I, dear reader. As we read the stories from people with MS and are witness to their lives, we’re reminded of our own challenges. As they delve into their successes, we remember our greatest victories. As they’ve swum in the sadness of grief and loss, we’ve also remembered our darkest hours.  We all need witnesses and we all need superheroes. Witnesses who share our lives making them all the richer; superheroes who appear when there are challenges that demand more than the ordinary. Wonder Woman and Superman (choose your own superhero), represent humanity being the best of the best, reminding us all of how great we can be. They also have their personal threats, the kryptonite that damages them like nothing else can. MS is my part of my kryptonite cocktail.  It is a radical thing to stand out, to tell your story and to hear yourself ‘speak’ out loud so thank you contributors for all your work. It is also an honour to have an audience that shares our passion for making life better. Dear reader, while we look for the superheroes outside ourselves and read the lives of others to be inspired, there are times we get the courage to peel off the layers that stop us from being our true selves. On behalf of the blog team, thank you for keeping us all on track and focusing on what the real challenges are. Here’s to another great year ahead.  Join Emma on Twitter @emmadragon and blog at 

    Author: Emma Rogan - 13 Nov 2015

  • Photo for article: Budget 2016

    Budget 2016

    Budget 2016 has reduced some people within the MS community to utter despair. With a boisterous voice and grand posture Labour Minister for Public Expenditure and Reform Brendan Howlin fired promise after promise through Dáil Éireann during Budget 2016 declaration. You could almost see and hear fireworks, bells and whistles in the background, so grandiose were its premise. On the other side of the spectrum, people with disabilities were waiting anxiously. They were hoping that after the drip-feeding of Budget information before its actual release, it would still bring some relief to the 600,000 strong disability community in Ireland. They had been waiting since the 2011 Election promise that Labour’s one key social justice issue would be that people with disabilities would be looked after. The longer Mr Howlin kept talking however, the more they realised that yet again, people with disabilities were not the hero of this year’s Budget.  It would be presumptuous of me to deny the good news that this Budget did bring to some of the 600,000 strong disability community. Investment in social housing and in early childhood education for children with disabilities is the very start of that 2011 Election promise. An added €3 million funding to fund Free Travel scheme as well as a €2.50 weekly increase in Fuel Allowance is definitely welcome. But, while an increase in the home carer tax credit system, the restoration of the Christmas Bonus and respite care grant will help people with disabilities and allow for some extra flexibility for their families, it does pose the question, “Is this enough to square that now infamous 2011 Election promise?” Sadly, it’s not. Budget 2016 is a pre-election test; nothing short of discriminatory; near-relentless in its object and a privilege for those still able-bodied, or similarly, able to work. Hope, equality, inclusion, no more worrying, access to medical and social services and a better financial outcome for people with disabilities have been wiped off the table. This community, my community, is now segregated even further. Consider it a cruel slap in the face of people who had hoped to see their Budget cuts undone. Oh, Budget 2016 came with a lot of promise. Promises not kept in particular, if I may say so in a bold manner. Soon after, patient organisation groups started receiving emails and phone calls of concerned families. While some heard what they wanted to hear, others like myself felt betrayed and used as an election-gimmick in 2011. We are not a gimmick, however, and we refuse to be a social injustice. Despite people with disabilities spending countless hours writing protest letters, engaging in advocacy efforts, listening to other people with disabilities, going to conferences trying to strengthen patient involvement, governmental support and societal understanding, Members of the 31st Dáil have come up short. We can all agree that the "squeezed middle" has been soothed somewhat by Budget 2016. My question towards the government is this, ‘Does the 2011-2016 legacy of Fine Gael and Labour want to be one where the sensationally-squeezed bottom remain gigantically forgotten, as those with already below-par health as well as incomes have to wait perhaps another year for a reversal of their recession cuts?’ The government hailed the 2016 version as one that rewards those who contributed most during the recession. People with chronic illnesses and disabilities have sacrificed life and health through no fault of their own, and they cannot be forgotten at all.  Michael Noonan very eloquently said, “The top priority of this Budget is to keep the recovery going, while providing relief and better services for the Irish people.” So, where is the sense of urgency towards the physically and/or mentally weakest in our proud society, an Irish society we all know is built upon the very notion that nobody gets left behind, that people will always help people? Just as eloquently the resilience of the Irish people came to the fore, something I have long admired in my thirteen years (and counting) in this magnificent country. Dear ministers, I see how people with disabilities (including their carer) travel 250km to Beaumont Hospital for a 15min chat with their neurologist. I see their resilience, and it should and would astound any healthy person. It should and would also make you angry when you realise that your own government has not taken any steps towards improving neurological services that would provide severely disabled people urgent relief from their daily situation.   I also see how some people are better in packing punches caused by yearly Budgets or other governmental ideas. I sit with them, ask, listen, wonder and cry in silence because they provide inspiration and motivation when and where you least expect it. I realise that some people with disabilities are in fact more able than any TD, Taoiseach or just dear me sometimes gives them credit for. Imagine what a force of nature this inspirational group of people can be if they were given their dignity back. Almost a decade of Budget cuts has left scars, disbelief, utter disappointment and sadness in almost everyone living in Ireland. While many have been able to find a new job and therefore have been able to increase their monthly income, many people with disabilities and/or chronic illnesses don’t have that option. They live in coexistence with a body that refuses to cooperate, making it impossible to ever return to the workforce. When the Tánaiste spoke about Ireland now facing a decade of opportunity, I sadly realised that I too won’t have that chance or opportunity. Six years after having to retire from work at age 36 due to my own chronic illness, and 5.5 years after having applied for social housing in Fingal, I am still on that very list. There has never been an offer, or even an idea as to when it might happen, despite being called “a priority because of your illness”. You can consider me almost desperate for my own space where I can take care of myself as best as I can. During my last neurological checkup I was told to stick to my daily regimen of lots of rest/sleep and as much medication to ward off new MS flares. Not something a 42-year-old person wants to hear after six years of early retirement, but you do what you can for yourself, but also to be able to help others in similar circumstances. Ireland is home,  and I try to help all those Irish people who welcomed me into their arms and hearts, and try to realise their respect, raise awareness about life’s complexities with multiple sclerosis and indeed, trying to become beneficiaries of Ireland’s legacy. Budget 2016 could have been the first where the weakest in our society were finally given their dignity back. Instead, we’re faced with a remedial Budget that has just a whiff of that 2011 Election promise to it. That one key social justice issue only feels half-realised, which is heart-breaking to those living with incurable, chronic, neurodegenerative illnesses.  *Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more.

    Author: Willeke Van Eeckhoutte - 05 Nov 2015

  • Photo for article: Nursing Care

    Nursing Care

    IMMA, otherwise known as the Museum of Modern Art in Kilmainham, always makes me imagine the dignified ghosts of old army pensioners sitting around the courtyard of the Royal Hospital in their distinctive Chelsea-pensioner red uniforms of ex-servicemen. There is a soothing feeling about the place; that of a job done, of rest, of a routine of predictable meals and duties. I am just being fanciful; I’ve never encountered anything there but modern art, but it does make me wonder about what it was like to live in the routine and care of an  old institution.  “Caring” institutions were not always so benevolant, and shutting people away from life is not normally the approach nowadays. After recent news stories about what goes on behind closed doors in some nursing homes and residential centres, it’s only normal to feel an apprehension about what the level of care might be.  A neighbour moved to nursing home a few months ago, and it made me realise that kindness and respect determine the quality of life for the people. It’s an amazing place where the nursing care is delivered with so much obvious love and professionalism. It has changed my opinion of nursing care very much for the better.  Nursing care, on a personal level, is difficult topic to think about. Nursing care can make you think of a loss of power, control and independence and why would you want to give up any of them without a fight? There are many people who dread moving into a nursing home when their health declines. We can resist any interventions that challenge our routine and independence, even when they have the potential to transform our lives for the better.  I have no idea what it is like to live life in a nursing care situation and I feel like a bit of a phoney even writing this piece, but it is the reality for some people with MS. There are some interesting international message boards (like MS World Forums and This is MS) where I chat with other MS’ers online. I’ve occasionally “met” other users that  live in long-term nursing care settings, but do most of their socialising, and living online, free from physical boundaries and access issues. I realised over time that not everyone uses nursing care on a  long-term basis, but  sometimes people need to rehabilitate after a long relapse, or if they need a break, or if their carer does.  The MS Care Centre in Bushy Park, Dublin 6, is the only respite and therapy centre for people living with MS in Ireland. I have heard only positive things about it from my fellow MS’er’s who have used it. A chance came up to attend an excellent course run by MS Ireland a few years ago called “Living well with a chronic illness” and it was hosted in the MS Care Centre. If I’m really honest, my denial can help get me through, and I was apprehensive about seeing what severe MS can do to a person. What I encountered in the centre surprised me. There was a light, easy-going and welcoming feeling about the centre; not the institution I’d imagined. I met different people there that were positive, interesting and engaged and some had come for a short rest. If I had to recouperate in the future I certainly wouldn’t mind going to the MS Care Centre. Over 500 people stay there every year.   My fellow-blogger, Willeke Van Eeckhoutte wrote an excellent article about the MS Care Centre for MS News, Autumn 2015 and described her short stay in the centre as being a home from home and “an exceptional place where anyone will get that time out they need without being treated as a patient, but as a person”. You can read about her stay on pages 28 and 29 here: . People staying there can avail of yoga, massage, occupational therapy, day trips, physiotherapy, and a personalised nursing assessments.   Institutionalised care like the Royal Hospital is mostly a thing of the past. Nursing care in 2015 is all about linking in with services that can support you on every level, about being kind to yourself, and allowing that sometimes you do need to let your MS to take priority. It is about extending and enhancing your life, not about shortening or cramping your lifestyle.  If you’re still unsure, try out a short stay in the Care Centre;  I have heard that you won’t be disappointed. MS Care Centre:  Call (01) 490 6234 Email Take 360˚ virtual tour of the centre * With a massive “thank-you” to fellow-blogger Willeke Van Eeckhoutte who helped me string my disjointed ideas together. 

    Author: Helen Farrell - 29 Oct 2015

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