Date/Time: 06 January 2018 - 09:00 to 17:00
Organiser: MS Ireland
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Date/Time: 08 January 2018 - 11:00 to 12:00
Organiser: South East: Una Goan, Community Worker
Region: South East
This week we welcome new writer Ciara O’Meara to MS and Me. Read on for her unique perspective on the MS patient experience. A 23 year old, 4th year student nurse is a dangerous thing. You know too much but not enough. You’re an integral part of the ward but not yet qualified. You’re still a student but yet expected to be a responsible adult. Throw a diagnosis of MS into the mix and it’s chaos! When the general consultant said, “Ciara, we think it’s MS”, my initial reaction was ‘They are going to keep me in now for tests and I am going to miss the nurses ball’. When my neurologist gave me the official diagnosis, I knew it before he did. I had read the MRI report upside down on the table and got a good peripheral read of the medical notes all within the time it took him to wash his hands and grab a biro. When I told one of my closest nursing colleagues about my diagnosis she said, “Right, will we go for a pint?” Typical Nurses one might say. But that is exactly what I needed; I needed to be a typical nurse. I needed to focus on the end goal, Graduation and Registration. I had a ward that needed me, patients that needed me and I needed to get through this for me. Trying to find the balance between ‘nurse’ and ‘patient’ is not easy. I am quick to give advice to others, but slow to take my own. I passionately care for others, but often neglect to care for myself. I find it difficult to be the vulnerable patient, sitting on the chair in the Tysabri clinic, watching the nurses’ draw up the infusion, insert the cannula and start the pump. That should be me. I was trained to look after Ciara as The Nurse; I wasn’t equipped to look after Ciara as The Patient. However with that said, I wouldn’t change being a nurse for anything. Nursing gave me experience, knowledge and patience to deal with, and accept, my diagnosis. It gave me access to evidence based scientific research, access to multi-disciplinary team members and access to resources and supports that I might have otherwise been unaware of. Nursing has given me confidence to deal with challenging situations and to question care-delivery and practice. And as much as nursing has given me, MS has now given me that extra advantage, that little edge over others. MS has made me a better nurse. I won’t ever know why MS decided to land at my front door but its arrival has produced a more caring, empathetic, appreciative, sensitive and inquisitive nurse. I now just need to ensure that this nurse starts to prioritise and care for her most important patient… Me!
The Board and Chief Executive of the Multiple Sclerosis Society of Ireland are committed to maintaining the highest standards of honesty, openness and accountability. Members and employees are often the first people who realise that there may be something seriously wrong within an organisation such as MS Ireland. The purpose of the Whistleblowing Policy is to outline the procedures for dealing with whistleblowing concerns, to confirm MS Ireland’s commitment to observing and maintaining the highest standards of honesty, openness and accountability in all its practices and to re-iterate the availability of existing policies for addressing other less serious non-whistleblowing issues and grievances. This Policy aims to encourage and enable people to raise serious concerns within MS Ireland through appropriate channels. “Whistle-blowing” arises where any person has a significant concern about any aspect of service provision in MS Ireland or the conduct of MS Ireland’s leadership, managers and employees or other parties acting on behalf of MS Ireland, amounting to a wrongdoing. “Wrongdoing”, for the purposes of this Policy, includes conduct indicating: commission of an offence or other unlawful act a breach of a legal or regulatory obligation a miscarriage of justice deemed financial malpractice consistently putting the health and safety of an individual(s) in danger consistently improper conduct or unethical behaviour a significant breach of the Society’s policies; and/or established standards of practice A deliberate concealment of information relating to any of the above can and should be reported under this Policy.
This week Christina McDonald goes deep into the experience of being diagnosed with MS. From being scared and grieving, she’s learned to doing things differently. More than ever before, she’s chasing her dreams. There was something in the words “You have MS” that filled me with mixed emotions and changed my life. The different stages of grief I went through after my diagnosis somehow helped me come to terms with MS. If you are newly diagnosed, it’s important that you know that these feelings are normal. Yes, they may recur, but things do get better. There have been days where I have felt chronic pain and others where I have sat feeling sorry for myself. And there have also been good days. I’ve learned to accept that my body has new limitations. I am still the same person and am still able to do things. I am just mastering new ways of doing them. My diagnosis is not what defines me; it has opened a new chapter in my life. It has given me a new outlook on life and I know I want to live it to the fullest of my potential. After my diagnosis, I started to put my health into perspective. I began looking after my physical and mental wellbeing and started to eat healthier. I feel that I am one of the lucky ones - I’m fortunate enough that my body allows me to do gentle exercise. It’s important to remember to listen to your body and what it is telling you. If you are having a bad day where you need to rest, don’t be afraid to use your voice. The people who love and care for you will understand if you have to cancel plans due to fatigue or bad symptoms. My diagnosis has given me a thirst for a better life and sparked a drive in me to pursue my dreams and ambitions. I know MS couldn’t stop me from achieving my goals but it has definitely changed my perspective on things, especially chasing my dreams. I learned not to worry about the things that aren’t actually important but rather to appreciate the little things that are. I have struggled since my diagnosis but it has also put things into perspective for me. I decided to return to education to do my Masters in primary education and I honestly don’t think I would have had the courage to do it if it wasn’t for diagnosis. Being given an MS diagnosis is tough and it can be scary but I have tried to use it to encourage me rather than frighten me. Research and educate yourself on MS using the wealth of material that there is available. Don’t rely on Google to tell you what’s going on! Educating yourself gives you the knowledge to educate your friends and family and to also spread awareness. If you have recently been diagnosed with MS and are worrying about what happens next, remember MS is not a death sentence. You can still do the things you want to do in life, you’ll just be doing things a bit differently.
Kiss Goodbye to MS for research into Multiple Sclerosis and vital services Multiple Sclerosis Ireland, with the support of TV presenter Lisa Cannon and two young women living with MS, Rosie McCormack and Sara-Jane Tracy, is calling on people to help Kiss Goodbye to MS raising funds for MS research and essential services. Throughout the month of May, supporters are asked to ‘go red’ and to Wear, Dare and Share: to wear red or hold a ‘red day’, dare to get sponsored for an MS Ireland sky dive, and share with friends and family to spread the word. For more information visit www.kissgoodbyetoms.ie Kiss Goodbye to MS is about raising awareness of Multiple Sclerosis and supporting MS Research as well as funding vital services that reduce the impact of MS including physiotherapy, counselling and newly diagnosed seminars. MS Ireland will hold the first MS Research Ball on Saturday, May 26th 2018 as well as a Red Lab Coat Day in research laboratories around the country, reinforcing the research message for Kiss Goodbye to MS. TV presenter Lisa Cannon is proudly supporting the Kiss Goodbye to MS campaign: "I'm delighted to be part of this important cause to raise funds for MS research and services, to help people living with MS. Three times more women than men are diagnosed with MS, with most being diagnosed between the ages of 20 and 40. Please go red this May and wear, dare and share to show your support." Kiss Goodbye to MS is helping to increase the number of countries fundraising for research. In 2017, 8 countries took part raising more than € 1 million. In 2018 12 countries are taking part with the aim to raise more than €1.2 million to fund research and services . Ava Battles, Chief Executive, MS Ireland comments: "While each country embarks on their own unique Kiss Goodbye to MS journey, the global MS community is more collaborative than anyone has seen before. MS Ireland is delighted to be involved in launching this important campaign for the third year running in Ireland to help raise funds for MS research and essential services for more than 9,000 people with Multiple Sclerosis. It's an important campaign for people and family members affected by MS. The campaign is also, significantly about hope, enabling and empowering people with MS to live the life of their choice to their fullest potential.” Rosie McCormack, 27, and Sara-Jane Tracy, 31, both living with MS are part of a squad of MS ambassadors to the campaign. They are among more than 9,000 people living with MS, facing the challenge MS every day. Help Kiss Goodbye to MS WEAR Raise funds and awareness by wearing something red or hold a red day event at work or in the community. Put on your favourite red lipstick, pucker up and share a kiss on your social media platforms using the hashtag #KissGoodbyeToMS. Please text KISS to 50300 to donate €4 and nominate your friends and family to take part. If you don’t fancy wearing red lipstick, any red item of clothing or accessory will do! DARE Dare yourself or someone else to do something out of your comfort zone and get sponsored for it. This year we’re daring people to do the MS skydive! But sky dives aren’t for everyone so please feel free to do a different dare! www.kissgoodbyetoms.ie/upcoming-events/ SHARE Share the message with friends and family to spread the word.
With a combined 175 years of living with the diagnosis of multiple sclerosis, the MS & Me blog team shares some golden nuggets of lessons learned. We asked our cadre of MS & Me bloggers what lessons they might have learned living with multiple sclerosis. Our editorial team was surprised – but then, once we thought about it we weren’t surprised at all- at how similar our contributors’ advice was. Yes, everyone’s MS is different. And just as everyone’s life experience differs, the way we cope with the challenges and adversities the disease visits upon us will vary. Still, there were several common themes running through their responses and we hope you find them helpful. #1 Don’t let others tell you how you should feel, behave, or live your life with MS. Nobody knows your life better than you; listen to your body. Learn to deal with insensitive comments, because people can say the most insensitive thing. #2 It’s okay not to be okay sometimes. Give yourself permission to leave that super hero cape in the wardrobe. #3 Accepting help is not a failure and doesn't mean you are a burden. People who care about you are just as frustrated with MS and want to do something to help. It makes them feel better. The price to be paid for overdoing things can be high, so learn to differentiate between doing as much as you can and doing as much as is reasonable. Ask yourself, “Can an assisted device of some sort make this task easier?” “Would that improve my quality of life?” If the answer is yes, use the damned device. #4 Self-care is not the same as being selfish. It’s okay to put myself first. It’s okay to say, “No”. #5 Don’t be afraid or embarrassed to talk to your medical team about anything… ANYTHING! From sex to toileting to cognition to palliative care and your fears, talk about it. Embarrassment gets in the way of you receiving the best possible care. #6 You have nothing for which to apologize when it comes to multiple sclerosis. MS is not your fault and MS is not something of which you need be ashamed, so MS doesn’t get an “I'm sorry”. Save the apologies for when they really matter. #7 Learn to adapt to the moving target of your ‘new normal’. Make allowances and be realistic about what you can and can't do. Everyone has his or her limits. We just might face them more regularly. #8 Life stops for nothing, not even MS. Don't let the disease stop you from living, loving, and laughing. MS will take the steering wheel if you let it…. Don’t Let It! #9 Be kind to yourself. Living with an oft-invisible illness can be tough. Be grateful for what you have and still be willing to share of yourself with those who make a positive difference in your life and the lives of others. You have great gifts worth sharing. #10 Not everything that goes wrong with your health (or your life, for that matter) is necessarily MS related. If you need to talk it out, find someone you trust to talk to. If it’s a professional, make sure they’re trained and accredited. Bonus Lesson: Don't ignore your medical team's advice. That said, it’s your life. If you have done the research and feel that it’s best for you to disregard their suggestions, don’t go rogue. Let them know what you are doing or not doing, what you are taking or not taking and why because, well…see lesson # 1. Wishing you and your family the best of health. Cheers.
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