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

  • Photo for article: But You Don’t Look Sick

    But You Don’t Look Sick

    This week Willeke Van Eeckhoutte looks at her biggest MS pet peeve! We have all been there, not just people with MS, but anyone with an invisible illness. “But you don’t look sick!” Perhaps THE pet peeve of everyone falling in that category! First appearances always count, and some people without an invisible illness or disability have a preconceived idea in their head of what you should look like; what your illness should be like and how you should respond to these combined factors. Then I think if people were to apply a similar line of thinking to people with cancer, would they judge in the same way? In the past, I’ve written many times about not looking sick and the drama it brings, and please do believe me, drama there is. At some stage the tension grew to such an extent where the hurt caused was more painful than some of my worst trigeminal pains. Of course, on the other side of the scale, many people who genuinely care about you, say that you look fantastic, and you can trust them never to add the unspoken “Oh, you most certainly don’t look sick to me!” The histrionics begins when people do exclaim those dreaded words. You can almost see negative words flowing out of their mouth and mind as if they always expect you not to look anything but sick. As if they need to see you struggle and look miserable to believe you’re ill. Dare to laugh and you must be as fit as a fiddle because surely, no laughing, decent-looking person can be that happy and sick! A while ago I came across an image that said: “Any idiot can fake an illness, but it takes real talent to fake being fine when you feel like hell inside!” It made me think of my late stepdad who used to say I was superb in hiding MS. As a result, there are days where my illness is not talked about at all. Sure, the MS is present, I feel it, it sometimes keeps me awake at night and I see the consequences of it in a nightstand filled to the brim with medicines. I just refuse to give MS more time than it deserves. It’s easy for others to judge you for five seconds when you are living with a 24-hour reality that looks entirely different. I have been cheeky in the past by asking “Well, what does being sick look like, then? Pray, do tell because I want to make sure I get it right next time” but I was met with wry smiles. My inner voice now says, “Oh, you may not see it, but I sure feel it, so if you want to exchange bodies for a while, I’m all for it! You can feel how everything below my skin operates and abuses my strength, and I bet you will not doubt me ever again!”  At some stage in your life, though, you think, “If I look ill, so be it.” I have black circles under my eyes of fatigue. Many times I wear fake tan to hide my pale skin and the circles, but on other days I simply don’t feel like smothering myself with chemicals. People stare at me when I don’t – that is their prerogative – and I have been called names by teenagers in my housing estate because of it. That, is also their prerogative. At first, hearing remarks on something I cannot always hide, hurt. Then I remember that I am not obligated to hide my illness from anyone, especially when it is to make people feel more at ease with their negative thoughts about me. I take the high road, and realise that people can only judge you from their own small-minded perception, and not from inside our body.  At some stage, people need to understand that bad words and attitudes can hurt more than physical pain can. If you have been following some of my posts, you might have read that I live with excruciating facial pain. Despite this, I have been accused of faking my illness and have been told to stop wallowing in self-pity for being unable to attend certain events. “Oh yes, as if I truly choose or want to take a lot of medicines and lie on the couch in pain all day!” When people only give you that much credit, it speaks volumes about their stance in life and says a lot more about them than it says about you. Anyone can get ill, anyone can end up in a bad way at the very last minute, so don’t kick someone who is already down. It is unforgiving, disrespectful and shows a lack of empathy. In the end, you could of course always say, “Of course I don’t look sick, I am so tired every day because of trying to look my very best!” Further reading If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter.

    Author: Willeke Van Eeckhoutte - 20 Oct 2016

  • Photo for article: Highlights from Conference 2016

    Highlights from Conference 2016

    This week Aoife, Niamh and Trevis recap on MS Ireland's Living Well with MS Conference. On Saturday, 24th September we attended MS Ireland's Conference in Cork, which focused on Living Well with MS. The MS and Me Blog team were invited to come along and live-tweet the event (which was also streamed live on the day). Videos of the different talks are available to watch on MS Ireland’s YouTube channel here Our main-man Trevis was compère for the event, so Aoife and Niamh were dispatched to cover the different talks and break-out groups. Through Twitter, followers from around the world were able to tweet their questions, which were then put to the speakers. We received reports from people watching the live stream from as far away as Iran and Turkey in the East and San Francisco and Hawaii to the West. Many members of our own blog team were unable to attend but they joined the conversation from Dublin, Kildare, Spain and Italy! We were also thrilled to find that 266 people watched the live stream on the day. A huge part of Living Well with MS is maintaining good brain health- in fact, this is important for everyone and was the focus of the day. First up was Professor Gavin Giovannoni - a favourite of the MS and Me team. Prof Giovannoni gave an informative talk on the 'MS Healthy Brain and Time Matters' - Prof. Giovannoni promoted the importance of patients making decisions. He also highlighted the need for early and effective therapeutic intervention. He noted that the most effective treatments is also the most cost effective treatment, as long term costs are likely to be lower if early and effective treatment is used. Prof. Giovannoni spoke about the importance of a strong cognitive reserve. Watch presentation here Dr Brian Sweeney who was up next spoke to us about 'MS Treatments, Current and Emerging'. Dr. Sweeney explained the monitoring process as well as discussing Human Stem Cell Treatment, explaining how it working and noting that it provides hope for the future. Watch presentation here The attendees then split into smaller groups to attend the workshops being held throughout the afternoon.  Niamh headed off to Trish O'Sullivan's talk on 'Exercise and its Relationship to Brain Health'. Trish, Senior Physiotherapist in HSE Cork gave an inspirational presentation on the work she has done with a group of people with MS.  Aoife attended Elaine King's 'Minding Relationships and Promoting Good Communication' - This session focused on the benefits of mindfulness and relaxation. Elaine stated that emotional education needs to be exercised for holistic wellbeing. After a busy morning of listening, learning and fielding questions from Twitter, we were all ready for our lunch, which certainly set us up for the rest of the day!!  In the afternoon two more workshops were held. Harriet Doig and Clare Dolan presented 'Employment Matters in MS' in conjunction with showing us the new MS Ireland publications for employees and employers. These guides help to highlight the importance of people with MS being able to continue working. Clare gave examples of how making small adaptations and adjustments early on can keep people in work longer.  'Tech and Non Tech Ways to Train your Brain' by Emer Duffy - During this session we were treated to a session of chair-based yoga. Emer Duffy spoke about cognition and the need to use the brain to strengthen cognitive reserve, noting that the best way to do this is to challenge your brain! Emer discussed the idea of creating smart goals, which are specific and targeted. A key message was to give your brain a break, and try meditation as a daily tool for brain health. Watch presentation here Sabina Brennan, Trinity College Dublin - fascinating talk about how we need to keep our brains active... exercise it like any other muscle, to keep it fit and healthy. Sabina advised that everyone must consider brain health - and that challenging the brain and keeping socially engaged is of huge importance. Sabina promoted a general healthy lifestyle to optimise brain health. Watch presentation here A drumming workshop rounded off the day, giving everyone a chance to release any tensions they had, before setting off on our journey home with a head full of ideas.

    Author: MS & Me Blog Team - 13 Oct 2016

  • Photo for article: MS Readathon

    MS Readathon

    This week Joan Jordan encourages children & parents to pick up a book, raise awareness of Multiple Sclerosis and get involved in this year's MS Readathon campaign! 'The books transported her into new worlds and introduced her to amazing people who lived exciting lives. She went to Africa with Ernest Hemingway and to India with Rudyard Kipling. She travelled all over the world while sitting in her little room in an English village.' -Roald Dahl, Matilda Since I got diagnosed with MS in 2010, books have become an even more important part of my life. Just like Matilda, at the mere turn of a page, I can transport myself to another place- another time- another life! A doctor’s waiting room becomes a bustling Manhattan trading floor where fortunes are made and lost within seconds. A bed-bound recovery day can be spent in Botswana taking red bush tea with the ladies of the Number 1 Detective Agency (and maybe cracking a few cases for good measure). My bookshelf at home is full of friends I know I can call on in times of need to give me a ‘book-hug’. One of the positive things to have come from living life with MS is that I now have more time to sit and read with my children. I can take them on the same adventures I relished when I was their age. As Dr Seuss says “You’re never too old, too wacky, too wild to pick up a book and read to a child!” We take it in turns to read chapters to each other and speculate about what will happen next. We stumble over new and challenging words and use them later to showcase our ever increasing vocabularies. Our local library has become a goldmine where we dig through the shelves and sometimes find unexpected treasures. David Walliams remains our very firm favourite- although; when we see the TV adaptations- the characters never seem to work out like they did in our imaginations! It was through this rekindled love for books that I signed up to be an ambassador for MS Ireland's- MS Readathon. This means that I get to visit schools to explain to children what MS is and how they can help raise much needed funds through the magical power of reading. I think that there are a lot of misconceptions about MS out there and it is very important to educate the next generation so they understand what MS is from an early age. WIN WIN! The MS Readathon couldn’t be simpler. Every child picks the books they want to read. They can pick as many or as few as they want. Then they ask their friends, family and neighbours to sponsor them. Then they start reading- and reading and reading. Because once they start…  Sign up today- it’s so easy! MSREADATHON.IE

    Author: Joan Jordan - 06 Oct 2016

  • Photo for article: Is That An Avocado in My Burger?

    Is That An Avocado in My Burger?

    From exploding tastes-buds to the metaphorical breaking–bread together, this week Emma Rogan goes basic on what powers her up, drains her energy, and the importance of food to her and her family’s quality of life.  Food makes sense to me, I love the chemistry of cooking, the possibilities of combining flavours and imagining how my cells are energised by what I chew and swallow. Learning, gathering, planning, preparing, washing, cutting, cooking and sharing food connects me to myself, my body and since being diagnosed with MS, with my health. But it is not only about multiple sclerosis. Heart disease and cancer have both affected my family, being lean is one of my ‘things’ and I’m a divil for the greens and salad.  Wasn’t it simpler in the old days? From the colourful noisy streets of Istanbul I’m catapulted to a time long ago, back to the cool scullery where my Granny kneaded dough before baking it in a griddle pan in the warm and toasty kitchen bathed in the scent of soda bread… it’s a close to heaven as I can get. In boarding school, it was the promise of something warm and tasty that kept us queuing to get into Mrs. O’Hara’s dining hall and, despite the complaints, we left nourished and sated (at least until the Tuck shop opened or someone opened a packet of cheese and crackers!). The food I ate at school gave me the energy to play hockey, to study and learn and at college we would share meals together as ways of getting to know one another. It was simple, it was nourishing… it was body AND soul food.  Now with all the different wannabe TV chefs, Instagramming and food fads, it can be difficult to decide who to trust or follow. Food is what makes us go, it is energising and restorative, and is such a joyful thing. Food can start relationships, ease new connections and spark possibilities where they were never there before. Food is a big part of maintaining a healthy heart and body and while we learn from the experts, we decide what we put on our own plates and into the bellies of our children. Make good choices. Over the years, I have made significant changes, some subtle, some profound. I’ve joined the GYI gang and grown kale on my balcony, we eat vegetables for every meal and I look to leaders in the field like Dr Roy Swank who studied people with MS over decades on low-saturated fat diets, Dr Terry Wahls (Wahls Protocol) who researched mitochondria and Dr George Jelinek who leads the Overcoming MS community. When it comes to what I put into my body, the diagnosis put me onto a colourful, scent-filled culinary journey that lead me to new ways of living. Fresh tomatoes, tofu, courgetti, avocado, oats, almond milk, no meat and minimum saturated-fat (I stay away from cheese, cow’s milk). When I was training, I had the benefits of having a personal trainer with great advice on keeping healthy and strong. It is not about not eating what you want; it’s about choosing food that will energise you later in the day, that tomorrow you won’t regret. Yes, there are days when I share a cheesy pizza but I soon go back to my greens. Yes, I have eaten fast-food meat in the past six months but it was a forkful not a meal. Yes, it takes time to put a good meal together but what else is as important than feeding myself and family with good, quality food? Connect with Emma Rogan on Twitter and see here blog here:  

    Author: Emma Rogan - 29 Sep 2016

  • Photo for article: #MSLiving is Coming to Your Laptop…

    #MSLiving is Coming to Your Laptop…

    This year’s MS Ireland National Conference will be held in Cork city, but if you can’t make it you can still join us and learn loads  This year the MS Ireland National Conference is entitled 'Brain Health and its Relationship to MS' and it takes place at Cork’s International Hotel in the Cork International Airport Business Park on this coming Saturday, 24th September. You can still register for one of the few remaining spaces. If, however, you’d like to be a part of the action and travelling to the event isn’t on the cards, we have some great news for you this year. The event will include Professor Gavin Giovannoni - Professor of Neurology at the Centre for Neuroscience and Trauma, Blizard Institute Barts and The London School of Medicine and Dentistry – speaking on the topic 'MS Healthy Brain and Time Matters'; Dr. Brian Sweeney - Consultant Neurologist, University College Hospital Cork – addressing 'Current and Emerging Treatment' and Professor Sabina Brennan - Institute of Neuroscience Trinity College Dublin – talking 'Strategies for Cognitive  Reserve'. These wonderful presentations will be streamed LIVE to this link on the day of the event. (Dr Giovannoni at 10:00am, Dr Sweeney at 10:45am, Senior Physiotherpist Trish O Sullivan at 11.45am, Specialist Occupational Therapist Emer Duffy at 2pm and Dr Brennan at 3pm). So you can watch the event live from wherever you happen to be on Saturday. Also – and we’re very excited about this as well – my blogmates and I will be reporting live from the event via Twitter and Facebook using the hashtag #MSLiving all day long. There will be several workshops ranging in topic from 'Minding Relationships & Promoting Good Communication' and 'Exercise & its Relationship with Brain Health' to 'Tech & Non Tech Ways to Train your Brain' and 'Strategies for Cognitive Reserve'. We will be posting tweets and Facebook status updates #MSLiving, so all you have to do is plug in that filter to your social media page and follow along. Use the hashtag yourself to ask questions and get answers from our panelists. We’re expecting a vibrant discussion and our blog team is already limbering up fingers and thumbs to keep you updated on the goings on at Saturday’s Conference. We hope you’ll join us! Remember, link to the streaming videos at 10:00am, 10:45am, 11.45am, 2pm and 3pm and follow the hashtag #MSLiving all day to see what’s going on and to ask questions. This is the first time MS Ireland have been able to bring the National Conference to you if you can’t make it.  We hope you’ll take advantage of the opportunity. 'See' you at the conference… even if you can’t make it in person. 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

    Author: Trevis Gleason - 22 Sep 2016

All MS and Me Blog Articles

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.

Latest News

More news

What's hot


MS Readathon

The MS Readathon is Ireland’s largest and longest-running sponsored read for young people. Sign up now!

Find out more

Events Calendar

» Our next Event

26 October 2016: Physiotherapy exercise class for people with MS, starts 12th October for 8 weeks.

View all events


If you'd like to receive e-news updates from The Society please enter your email address below. If you want to know more about how we manage personal data then please see our privacy policy.

My local MSI

Map of MS Ireland's service areas South Mid West West Midlands South East North East North West North Dublin City and Fingal South West Dublin and Kildare South East Dublin and Wicklow