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

  • 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 TrevisLGleason.com

    Author: Trevis Gleason - 22 Sep 2016

  • Photo for article: What’s App? Smartphones and MS

    What’s App? Smartphones and MS

    This week Helen looks at her smartphone use...  I have a confession to make; quite often my smartphone gets more of my attention than my husband does, and it is a mutual situation with both of us tapping away in the evening as we read what has happened for friends on Facebook or the like. Years ago I was an avid fan of Star Trek: The Next Generation. In one episode the crew was taken over by a device that had a game so addictive, they were unable to break free of playing it obsessively (“The Game”). Only a young crew member and his friend were able to realise the evil hold the game had on them and free the crew of it. I am reminded of the episode when I find us tapping away on our smartphones, staring at the screens and ignoring each other and the television as we dual-screen to our hearts’ delight. How has this device such power over us? For information-addicts like me, it is a constant source of learning, entertainment, escapism and more. When I think back about what I did during periods of boredom in the past, I remember reading the back of cereal packets, propping up books as I ate, bringing books everywhere with me for a few minutes of escape. My smartphone obsession is probably no different than how I used to behave. However, I notice I am not as relaxed when reading material online. So much to keep up with! So little time! Books are a much more mindful experience and gentle on the eyes. I am now re-cultivating my paper-based reading and it truly does give a greater feeling of relaxation than browsing constantly on my smartphone.  Which brings me to a new phrase that I recently learned of, “Sleep Procrastination”? Unfortunately, I have always been prone to the ordinary type of procrastination, relying on the stress of flying by the seat of my pants to wing me through on far too many occasions, although I am improving a little with age! Sleep Procrastination refers to putting off bedtime, or rather, sleeping, in order to read – and it is mostly refers to online reading. It is the cause of sleep deprivation, poorer mental health, weight gain and all manner of bad things. You can read more about it here, but suffice to say we really need to turn off that smartphone or whatever is keeping you up, and prioritise our sleep! Us MS’er’s are already prone to poorer sleep and greater amounts of insomnia, so why are we letting these devices dictate our lights-out time? Just do it! Turn the light off earlier tonight, and you will feel better for it, I promise.  Used to our advantage smartphones are wonderful things. I have never found MS-tracking apps useful. All they do is to focus my attention on my MS, and that is the last thing I want to do. It already gets far too much of my time, my life and my energy. But there are a load of apps that I DO find useful and they have improved my level of mindfulness and calm. I have an android device and I favour apps that have a low amount of permission requests (for security reasons) and are free from the Play Store. My favourites are:  The Pedometer app is great for showing me when I am starting to slow down. It can track Kmph as well as the normal step count. Not only does it encourage me to keep trying to walk as much as I can manage, if I see my speed dropping it can alert me to a possible need for more rest, or an upcoming relapse.  OMM is a cute little 1-minute meditation app that is great for people who are useless at meditation like me. I find I am more likely to do a 1-minute exercise regularly than commit to a longer session.  The Mindfulness Bell is great for centering yourself, taking a moment to relax and breathe properly. You can set it to ring at different times, different frequencies; just don’t forget about it heading into a work meeting like I did! Another night I went out walking and I had looked up at a full moon with the clouds racing above me, just as I was about to pass the creepy spot where 2 thieves had been hung in the 1800’s for a violent robbery and the mindfulness bell tolled loudly, making me jump out of my skin!  ‘Vowel Please!’ is a Countdown-alike app that’s good for exercising the oul’ grey matter and winding down from all the monkey-mind thoughts and worries whirling around our heads.  Whenever a new technology is introduced people tend to fret about it. Some people wrote warning articles in Victorian Britain about the speed of railways and how our health would suffer to travel so much faster than natural horsepower. Microwaves would be capable of frying our brains, destroying our fertility, adulterating our food, frying our fertility. Did these things happen? We can recognise panic in the face of technological advancement, but can we equally recognise when we have become obsessive about being used by a device, rather than using it for our advancement and entertainment? It is up to us to make sure that we are using smartphones to our benefit, rather than them having the power.  Let me know what you think of smartphones; good or bad? Do you have any favourite apps? 

    Author: Helen Farrell - 08 Sep 2016

  • Photo for article: Am I Just Sad or Is It Depression?

    Am I Just Sad or Is It Depression?

    This week Declan Groeger considers peace of mind and not letting life get him down.  I am an optimist and always will be. I always, well almost always, look at the upside and my glass is rarely even half empty; sometimes it’s awaiting a refill! I always try to keep my best side out. It’s not that I try to hide my feelings or my less-than good days but I just don’t broadcast them. People have commented on my seemingly ever-present good humour but the reality of the matter is that it is not ever-present and the days it is missing are the days when I stay at home and minimise social interactions. Thankfully those days are few and far between. Do I get sad? Of course I do but rarely as a result of Multiple Sclerosis (MS).  Do I know the difference between sadness and depression? I like to think that I do. I remember going for a flu vaccine a number of years ago and the administering nurse asked if I ever had the flu and when I replied that I didn’t think so she said “I’ll take that as a no because if you ever had flu you would never forget”. I think that if ever I had been depressed I would never forget it. I now liken sadness to ‘man flu’ and depression to the real flu; once affected never forgotten. Sadness is an integral part of human life but depression is not. How do I stave off depression and maintain a relatively sunny disposition? Contentment! I have accepted my situation. I am not happy about it; who would be happy to have MS? But I do have peace of mind. That is not to say that I am resigned to my fate. Resignation brings with it feelings of hopelessness and despair and those feelings are the beginning of a downward spiral into depression.  If you keep looking back, you can’t see where you are going. This is so true and let’s be honest, us, people with MS, have lots to look back on, to reminisce about. What might have been, what could have been, what should have been. This is obviously a cause of sadness and the fact that the future doesn’t look too rosy further compounds the situation, but we shouldn’t leave those thoughts to fester like a bad sore or to hang over us like The Sword of Damocles. I have tried to embrace mindfulness and live for the moment, the here and now but such thoughts are not to espouse selfishness. It is important to get the balance right. I find that writing gives me release. I sometimes write about things that I have never discussed before but having put a topic out there it becomes easier to have the discussion. Find what works for you and hang onto it.  Would I know if I was slipping into depression and would I know what I to do about it? I like to think that I would recognise it but having never been there I’m not absolutely certain. I do, however, know that it’s good to talk. A problem shared is a problem halved. People tell me that I’m a good talker but there are times when it is more important to listen; we were born with two ears and one mouth so that we listen twice as much as we talk. The worst thing you can do is nothing. I came across this old favourite of mine recently and adopted it as my anthem, Don’t Let Life Get You Down by Lionel Morten. To me it is typical ‘70s but the advice is as good today as it was then. Declan Don't forget to visit able2access.wordpress.com a blog about accessibility for the mobility impaired. 

    Author: Declan Groeger - 01 Sep 2016

  • Photo for article: My Passion Piece: How A Little Word Can Make All the Difference

    My Passion Piece: How A Little Word Can Make All the Difference

    This week, Lucina discusses how the words people use to speak about people with MS has an impact on our identity. There’s also mention of dating and road frontage! I’ve always hated labels. As a child, it was the itchy, scratchy ones on the back of new tee-shirts that had to be cut off before wearing them. In later years, it’s the other ‘labels’ that have caused me more discomfort. The labels that stick, that brand you. The ones that are hard to shake off once you have them.   Ones like ‘MS Sufferer’.  Big label.  Huge connotations. I should say that I absolutely and respectfully acknowledge that there are many people with Multiple Sclerosis whose journey with this illness is a lot rockier than mine, who ‘suffer’ more than I. I am conscious of those people particularly when I write this and I understand that they may disagree with me, because their experiences are different than mine and may feel that their rockier road should be recognised as such.   However, I write this taking a broad view, thinking of myself and the many people that I have encountered who have MS since my diagnosis.   When you apply the ‘MS (or other chronic medical condition) sufferer’ label, you are allowing the label to consume the person, with the individual coming a close second. The media are divils for it. Maybe ‘MS sufferer’ makes a better headline than ‘person with MS’, but in my opinion, it’s neither a useful nor always accurate description.   To me, that horrible noun takes away their humanity, their personality and suggests other words like ‘invalid’ ‘victim’ and even ‘martyr’. It’s not how I want my children to speak of me, even if my health deteriorates. The people with MS that I know are citizens, tax payers, parents, lovers, advocates, sisters, brothers, bloggers, daughters, sons, engineers, philosophers, fundraisers, athletes, who also happen to be have a common monkey on their back. And deal with it they do. With courage, dignity, zest, humour and yes, at times, with anger, disillusion, disappointment and fear.     While I am on my soap box, the phrase ‘MS patient’ bothers me too. It conjures up images of a person passively nodding in agreement to the words of the Master.  Most people I know with MS are very well informed, active and educated participants in the decision making around their wellness and health care plan. In my opinion, a person with MS, or any other illness is only a ‘patient’ when they are in a consultation with, or being treated by their GP, neurologist, or other specialist. Once they walk out of that room, they are back to regular old Citizen Me, getting on with life. Perhaps it would be useful to apply these labels to two personality profiles, one looking for a new job and the other, a date ‘Award-winning civil engineer with 20 years’ experience on large scale international project and Multiple Sclerosis Sufferer seeks exciting new challenge’  or  ‘Twenty-something fun loving girl, with ten acres, including road frontage, looking for a man to share her dreams.  MS patient’ To me, the ‘award-winning’ engineer and even the much sought-after ‘road frontage’ pales into the background, with the medical condition to the fore, in bright shiny lights.  On a number of occasions, I have contacted radio stations and newspapers about their use of the phrase ‘MS sufferer’, to ask them to consider their use of language, but I have yet to receive a response from any of them. That won’t stop me from calling them out about the lazy linguistic choices that put me and other people with MS in badly-labelled boxes. Maybe the words they use don’t really matter to them, but they do to me. For now, I’ll put away my soap box, but in an easily accessible place! 

    Author: Lucina Russell - 25 Aug 2016

  • Photo for article: VOTE for MS & Me

    VOTE for MS & Me

    Community blog shortlisted for Littlewoods Ireland Blog Awards Good news! MS and Me, has made it to the short-list in the 2016 Littlewoods Ireland Blog Awards - Best Health and Wellbeing Blog Category. To help us reach the final please click on the image below and vote MS Ireland's MS & Me Community Blog. Voting closes Tuesday, 23rd August 2016 at midnight! THANK YOU to our dedicated bloggers - Aoife, Declan, Emma, Helen, Joan, Lucina, Niamh, Trevis and Willeke for sharing their MS stories and everyday life with us.  Further reading MS & Me community blog Meet the team  Littlewoods Ireland Blog Awards website

    Author: MS Ireland - 19 Aug 2016

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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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