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Date/Time: 08 January 2018 - 11:00 to 12:00
Organiser: South East: Una Goan, Community Worker
Region: South East
Date/Time: 09 January 2018 - 11:15 to 12:15
Organiser: Louth Branch
Region: North East
Date/Time: 09 January 2018 - 12:00 to 13:00
Organiser: South East: Katie Hourigan
Region: South East
Date/Time: 09 January 2018 - 10:00 to 12:00
Organiser: South East: Una Goan, Community Worker
Region: South East
Date/Time: 09 January 2018 - 11:00 to 13:00
Organiser: North Dublin: Sean Kinsella
Region: North Dublin And Fingal
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.
Kiss Goodbye to MS, 18th - 21st May with Costa We are delighted to announce Costa are joining MS Ireland to help Kiss Goodbye to MS. The weekend of May 18th - 21st will raise awareness of Multiple Sclerosis and funds for MS research. Hope to see you there!! Drop in to a participating store near you & have a brewtiful day! #kissgoodbyetoMS #bringinguscloser
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.
James Tracy, Leinster and Ireland rugby player, tells us about his sister Sara-Jane Tracy and how much she inspires him. “Family is a unique gift that needs to be appreciated and treasured, even when they’re driving you crazy, which happens a lot when you're the youngest and only boy with two sisters!!. As much as they make you mad, annoy you, put you back in your box from time to time, these are the people who know you the best and who love you the most. As the saying goes 'you don't know what you've got till it's gone', it's true, but we are all guilty of taking life's gifts for granted. For my sister Sara-Jane, being diagnosed with MS pales in comparison to being told she couldn't do what she loved anymore. Horses were not just a hobby for her, from an early age they were her outlet, her job, her life. Through diet, exercise, hard work and sheer determination (she gets her stubbornness from the mother!), she proved the experts wrong and was back on the horse in a matter of months after being told she would never ride again. Like everyone, she has her good days, and she has her bad days. I will never fully understand or feel the struggle she endures every day. What I do know, is the journey she has embarked on. From the lowest lows of not being able to dress herself, having to learn how to write again to losing her kidneys early this year, to the highs of getting to ride again whilst juggling a strict dialysis schedule, incredibly she is now back competing. My sister is not only someone I love with MS, she's someone I admire.” Do you love someone with MS? Then spread the love, put those thinking caps on and hold a Kiss Goodbye to MS fundraiser this May! Now is the time to rally your friends to support MS research, help fund our services and get creative. Whether you want to hold a morning tea, run a marathon, throw a movie night, or even fire walk, your fundraising options are endless and no idea is too crazy! Register now and hold a fundraiser to help us get closer to a cure for MS. www.kissgoodbyetoms.ie
This week, in a letter to her nearest and dearest, Willeke Van Eeckhoutte puts down in words how she really feels. “What do you want me to say?” Dearly Beloved, What do you want me to say? What is it you don’t understand? When someone like you says, "Well, what do you want me to say?" during moments when I feel less than cheerful, it sounds like a rejection. Not just of me, but of your understanding of what I, and we, have been going through for the past 13 years. After all this time, all the wisdom we have gained, we could be the writers of the largest MS encyclopaedia! Instead, being asked that question sounds like a betrayal. It’s like you’re using the illness I never asked for as a slur against me. The truth is, I could write you a hundred different letters and a thousand expert explanations about my symptoms and my thoughts on all those shiny plaques on my MRI images. Nonetheless, I often think, "How can you possibly relate to my life if you don’t have MS?But, with all its intricate, demeaning and unpredictable symptoms, how could I ever expect you to?" The answer is, you honestly cannot know what it is to be me, and this is not my rejection of you, far from it. But, I do need to plea for your insight, patience and empathy. Just as I am struggling to find the words in this letter, MS is an ever-changing plotline that forces me to reinvent my life’s storyline as we speak. When I snap at you, I don’t mean to. More to the point, you were probably not the problem. Like when slamming a door in anger, the doorframe, the wall or the house aren’t ever reasons for the action. Sometimes I am absolutely worn out, totally exhausted because of my illness. This exhaustion feels even more pronounced when people express how they don’t understand me. I’m tired of the illness that has me acting in ways I normally wouldn’t. I carry an imperfect brain because of illness with a fickle revolving-door manifestation. It causes me to feel claustrophobic within myself. I know that keeping up with an ever-changing illness is as challenging for you as it is for me. I also know that there are times when you’d rather be somewhere else instead of being near me. What I want you to get is I don’t wallow in self-pity nor do I jump up and down in elation because I was diagnosed with this obnoxious illness. MS has impacted so many aspects of my life, it is part of what makes my life what it is today. Makes me how I am today. Flawed? Yes. Fickle? Perhaps. Happy? I sure am! Hopeful that you would understand me? Absolutely. What I ask for is simple but it isn’t easy. You are part of my walk through life and am glad to have you with me. When you feel exasperated by what I say or do, please step into my shoes with me for one minute and we can work out what’s really going on. Lots of love, Willeke Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me
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North Dublin A...
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