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

  • Photo for article: MS Bucket List

    MS Bucket List

    Do you have a bucket list? This week for her first blog, Rosie McCormack writes about hers and how she dealt with all the holes in her bucket list post-diagnosis.  About six months before the relapse that led to my diagnosis, I was out running and I suddenly became so aware of how lucky I was. The beauty in every single step, the ease of breath. It hit me how quickly it could all be snatched away. I realise now how eerie that premonition - of sorts- feels but that reminder to stay mindful stuck with me on every single run and walk after that. However, it wasn’t until I heard those three words on a sunny afternoon in mid-May that it really hit me how quickly my ever-expanding bucket list could be destroyed. So, only a few hours after receiving my MS diagnosis, I went home, laced up my runners and signed up for the half marathon I’d always talked myself out of…. Oh, and I ordered a pizza and ate A LOT of chocolate! I cherished the time spent training for that half marathon - it gave me the headspace I needed to come to terms with what MS might mean. “MS will not stop me doing the things I love,” was my daily mantra as I fought back against the disease, pounding the pavements as I went. But then it did exactly that.  Nine months after completing that beautiful half marathon, I found myself in need of a wheelchair, a stick and at the start of what has since become a life of chronic pain.  And yet, as I watched one bucket list wash away, another one formed and started to overflow with ideas. Even in the days I needed a wheelchair to leave the house and never saw myself without it, never mind managing a lap of the park without it, my bucket list was no less extensive. From deciding that the marathon I never got to do would be replaced by a skydive in 2018 (shhh don’t tell my mother!) and accepting the help of a wheelchair to enable me to continue seeing the world - with Alaska and it’s whales and wildlife coming up trumps - to deciding I would one day walk around my favourite park again (and I did!), getting a dog, getting married and choosing to enjoy and to really cherish the beauty of the everyday despite MS and chronic pain. In 2015, my bucket list involved a half marathon. In 2016 it involved just wanting to sit in the park and in 2017 it involved managing a single lap of that park. Because that’s the thing with MS, the bucket list regularly gets reset and that’s okay.  You see, each and everyone of us is far more resilient and amazing than we realise. So while MS may seem like a thousand bullet holes through the middle of your bucket list, it’s also the fuel for a far more powerful and beautiful one to come. So, believe in yourself, take a deep breath and get busy planning.  Further reading! Rosie has a personal blog where she writes about her life, running and keeping the bucket list overflowing! Check out https://sherunswithms.wordpress.com/ 

    Author: Rosie McCormack - 22 Feb 2018

  • Photo for article: MS and Lent

    MS and Lent

    This week, Emma Rogan is reminiscing about mornings in a cold drafty boarding school in the Midlands. Read on for her take on the next forty days and forty nights. In my school days I got involved in the Christian Union, a group of young Christians in my school. I got seriously into my Bible and all things God-dy. Every morning, before everyone else in the school was awake and the bustle of hundreds of other children echoed through the drafty old building, I’d sit on the stairs doing Bible study.  When considering this piece on Lent, I thought back to those days, reading about the forty days and forty nights Jesus spent in the desert and trying to figure out what was it all about? To be honest, I was a little jealous that Jesus had ALL that time to himself! When I was reflecting on that story, I thought about being in a place without the company of others, without basic necessities among thorny prickly plants? For three days and nights, during a trip to India, myself and a friend went on a camel safari in the Thar Desert. Scorching in the day, the sun beat down on us and freezing in the night, we got tucked up in our sleeping mats.  But for people with MS there are always reminders of a desolate place- I’ve never been so alone than on the days and months after my MS diagnosis. The uncertainty, the devastation, the morbid thoughts of a life un-lived and then there was all the choices I had NO clue how to make. MS is my barren desert; that desert represents to me what life is like in the first few months and even years of life with MS. But I eventually walked out of that desert. There are still some thorny parts of me and one of them is distraction from myself.  I’m prone to sitting surrounded by books, gleefully sitting alone for hours, absorbed or turning on the radio first thing to get a dose of politics or sitting scrolling, scrolling, scrolling through my Twitter feed. Distraction and denial of what was going on in my ‘real’ life. My phone is always with me, I’m rarely uncontactable and there’s always a source of information (wanted or otherwise), close by. This is really useful for us if we want to be distracted from what really matters and I’ve been distracted from what really matters.  In my early life, I learned that Lent was a time to give things up (chocolate, sweets, my Granny’s butterfly buns!) but also a time to make some new habits like being kinder to my siblings or being more helpful. The habit of sitting in the quiet of the early morning is something I’ve returned to in recent years. The habit isn’t easy but the simple process has subtly helped me deal with issues in healthier ways. It helps me deal with vagaries of MS, the depression, the fatigue, the balance issues, the cognitive issues. There have been times when my belief system has been wrung out, left to crisp up in the pounding noise of MRI scanner or when my dignity flowed down the leg of my trousers as my damaged/very sensitive bladder emptied before I could even pretend to be near the facilities.  I protect my mornings because it is in this sacred space I connect with my inner strength and power. No matter what is going on in the day, how bad my MS is playing up, when things get too much, I can tap into that peace and strength. The morning time I spend on my own, meditating, reflecting on a piece of writing, has given me greater understanding of myself. I think this is where this Lent thing started. Someone had a great idea to get away from it all, to find peace and to listen to their inner power. For the next forty days, I’ll go with doing something every day that makes my or someone else life, a little bit better. “There is guidance for each of us, and by lowly listening we shall hear the right word... . Place yourself in the middle of the stream of power and wisdom which flows into your life. Then, without effort, you are impelled to truth and to perfect contentment.” Ralph Waldo Emerson.  Check out Emma’s blog or get chatting on Twitter

    Author: Emma Rogan - 15 Feb 2018

  • Photo for article: Home Care Services

    Home Care Services

    This week Declan Groeger considers what it means to have help in the home. It’s never as simple as it sounds and when it comes to services for people with MS in Ireland, things are really very complex.  Living with Multiple Sclerosis (MS) is not easy at the best of times and as the disease progresses it robs us of our abilities and independence. Often we need to consider what help we need, in what sphere of our life we need it and what is available. I’ve written previously on my use of Assistive Technology and how it slowly crept into my life, today is about the use of assistance in the home is just another step along that road, albeit a very profound one. The HSE definition of a Home Care Package is “a set of services provided by the HSE to help an older person to be cared for in their own home.” The raison d’être for home care would be to enable people to live independent lives of their choosing for as long as possible. The realisation, admission, that one is no longer able to take care of oneself is massive. It’s not that long ago when family members looked after the ill and the elderly at home for as long possible. Now, the pace of modern life has changed what was once the norm. Families are smaller, lives are busier and fewer people have the time to do what was once another part of family life. Some people now see this care as being the Irish State’s responsibility. My family moved back home (to Cork) a number of years ago and we were exceptionally fortunate that our needs coincided with opportunity. This was 25 years ago, a time when a house with a large garden was a good thing, when big steps at the front and up to the back doors were not an issue. As time moved on, so did my MS. Now the garden was too big, the steps were too high and the internal doors too narrow. It was time to make changes. We moved into my wife Jean’s family home, after we future-proofed for accessibility with wide doors and a wet room. The small garden and level access at the front door make life easier. Many people have a gardener to cut the grass or a housekeeper to help with the housework and many of the supermarkets now offer online shopping and home delivery. We manage with most of the mundane stuff but we do pay to get the grass cut, our family are very good at helping with the more difficult jobs around the house and our neighbours help with awkward stuff like the bins. One of the questions I have about the Irish home help and home care system is where does personal responsibility end and state responsibility begin? I studied the submission by MS Ireland on upcoming changes to the Home Care system in Ireland. To me, it appears the system is inflexible; it doesn’t take into account what the applicant wants and imposes what it (The System) deems is needed. Often it seems that what is on offer is the minimum and nowhere near what is people require. The type of ‘help’ available, seems to be foisted upon the recipient rather than having a Care Plan agreed with the stakeholders. One example was that of a woman receiving one hour a week which supported her in the housework area. She was told that her single hour would now be used for personal hygiene. The best that I can say for the system is that it is free to Medical Card Holders. The needs of a person living with MS are as complex and varied as the disease itself and any Home Care Package needs to be flexible to meet those changing needs. Barriers should not be imposed to suit the establishment; they should be removed to suit the recipient and foster independent living within the home and community. Inform yourself of what is available and how to apply: HSE Home Care Packages Citizens Information To read more from Declan on this issue, read here  If you have any comments on your experiences with the Home Care services, post your comment below. 

    Author: Declan Groeger - 08 Feb 2018

  • Photo for article: Meet Our New MS & Me Blog Team – Part 3

    Meet Our New MS & Me Blog Team – Part 3

    Today we conclude our introduction of our expanded 2018 MS & Me Blog team. There are a number of familiar faces and some shiny new additions! All are up for the challenge of writing and sharing their experience with the MS community.  Helen Farrell  Avid historian and part-time librarian. Helen has learned volumes in her 20 years since diagnosis. “Trying” is her operative word whether it be learning a new skill (currently the tin whistle) or keeping active with gentle yoga and short walks. This long-time blogger also knows the importance of rest. Mary Devereux  Hailing from Ireland’s southwest, Mary was initially diagnosed with Relapsing-Remitting Multiple Sclerosis in 2010. Her diagnosis was changed to Primary Progressive MS in December 2016. Mary will join us as an occasional guest blogger this year; offering up her experience with this more aggressive form of MS.   Niamh McCarron  Diagnosed with Relapsing Remitting Multiple Sclerosis in 2010, Niamh lives in Dublin but is originally from the glorious County Donegal. She’s been writing with the MS & Me blog from its beginning in 2013. A dearth of online resources for younger people with MS spurred her on to becoming a contributor and we’re delighted to welcome her back this year.   Katie St Lawrence  Katie St Lawrence is 24 year old and has been living with MS since her first relapse three years ago. She pursued her honours degree through her diagnosis (BS in Baking and Pastry Management from Dublin Institute of Technology). She lives and works in Rush, County Dublin.   Willeke Van Eeckhoutte Originally from Belgium, Willeke moved to Clonsilla, Dublin in 2002 and was diagnosed three years later. She loves Irish rugby, books and history. Willeke finds solace and energy in her writing and disability advocacy. Her own blog, Ireland, Multiple Sclerosis & Me has garnered her considerable recognition in the MS community. That rounds out our list of bloggers for 2018.  I hope you join us in wishing them the very best and we all look forward to their contributions to MS & Me.  Meet our new MS & Me Blog Team - Part 1 Meet our new MS & Me Blog Team - Part 2

    Author: MS & Me Editorial Team - 01 Feb 2018

  • Photo for article: Meet Our New MS & Me Blog Team – Part 2

    Meet Our New MS & Me Blog Team – Part 2

    Continuing with our introduction of the 2018 MS & Me Blog team, let us introduce a few more members of our team. Rosie Farrell A graphic designer and sub-editor, the Sligo native now lives in Dublin with her husband Niall and their little dog Trixie. Rosie was diagnosed with MS in 2015. We look forward to her honest portrayal of what her life with MS has become, how she copes and the lessons she continues to learn.  Ciara O’Meara Tipperary woman and general nurse, Ciara, has a deep passion for travelling and volunteer work around the globe. Add in her studies, a research dissertation, coupled with relapsing remitting MS and you’ve one busy blogger. “IAA” is why Ciara says she joined MS & Me - Information, Awareness and Advocacy.   Teresa McShane 47 year old, married mother of two boys living in West Cork, Teresa enjoys cooking, reading, swimming and spending time with friends, in addition to writing. By joining the MS & Me Blog team, she hopes to contribute something positive to the MS community in Ireland and beyond.   Grace Kavanagh Living in Dublin, Grace – Married and 39 years old – has a passion for learning new things to keep her mind keen.  She hopes to not only share her experiences by blogging, but to be an active member of the MS & Me community to learn new tips from readers as well.     “AnonyMS” One of our bloggers has requested to remain anonymous (AnonyMS… see what we did there?) in her writing.  Not for the mystery of it, but she’s finds that misconceptions and prejudices remain strong in all walks of Irish society. The 29-year old Dublin healthcare professional and travel enthusiast was diagnosed in 2014.     Niall McGahon  Also diagnosed in 2014 is Niall, an implementation engineer for MRPI. He’s been married to his wife Claire since 2010 and became a new father last year. The Captain of his local golf club, his MS & Me contributions mark his first venture into writing about his life with multiple sclerosis.    Next week we’ll round out our team and then get on with why you come to this page.  We’ll start the year off with a piece from our contributing editor, Declan, about help around the house. Meet our new MS & Me Blog Team - Part 1 Meet our new MS & Me Blog Team - Part 3

    Author: MS & Me Editorial Team - 25 Jan 2018

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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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