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

  • Photo for article: How Writing About MS Makes My Life Better

    How Writing About MS Makes My Life Better

    This week Willeke Van Eeckhoutte shares with us the value of writing about living with MS. She’s an award-winning, irrepressible blogger and we are delighted to have her continued contribution to the MS and Me team. When tasked with an article about writing and MS, my mind always does summersaults because what could be better than writing about writing? My love for anything written has been as old as I am young. Being a proud library member, ex-library assistant and forever-friends with books, putting pen to paper was always going to happen. Two decades ago, MS crashed headfirst into my life. There was no introduction, no. This was MS, a foreign entity that lacked basic social skills. Writing was an expert psychotherapeutic net that caught me when I was in free-fall after hearing, “You and MS”. Then I went to “Teach your environment about MS because too many people have the wrong idea about it”. Teach I did, only not quite as professionally as I would have liked because of lack of time. That was until my pen found its way to a notebook about two years post-retirement.  In 2011, I created a blog, Ireland, MS and Me and slowly, writing about Ireland morphed into writing about MS. I didn’t want an overly edited site where the relationship between MS and I would be squeaky clean. No, I wanted it to be warts and all- raw, simple and calling out everything that affects me physically as well as mentally and emotionally. After all, I wanted to connect with others who were in a similarly devious and loveless relationship with their illness. As the mission statement on my blog says, I tried to make sense out of MS nonsense together with my readers. The following two years, I began to see how writing about MS brought a significant shift in my thinking. I was discovering what the new me was all about. It was as if portable X-ray images continuously peered deep inside my mind. Stress levels went down and clearer thinking about MS emerged from what I thought would be an increasingly dark, unhelpful attitude. Unshed tears turned into words and my agony healed into non-judgmental self-acceptance. Writing like this came at the right time and in the right place for me. Because I love writing by hand, I feel I can address my emotions that surround life with MS on a deeper level than when I write on a laptop. My hands, brain and environment are locked in a vacuum that is the present tense- the Here and the Now. Paper is a natural listener, one that will not leave when your sixty minutes with a therapist is over. There is an instant connection, even if your Wi-Fi goes offline. MS subconsciously began to take a step back. Of course, my symptoms were still there, but I started to recognise their value to my writing. As George Bernard Shaw once said, ''I enjoy convalescence. It is the part that makes the illness worthwhile.''  In my case, the worth of writing is felt especially when anxiety shows up during the trigeminal neuralgia attacks I get. The pain gets to hear the sound of my pen flowing on paper and that powerful pen is saying, “Shut up, you! Get the hell out of here!” The benefits of writing are legion. Writing has been scientifically proven to boost your immune system, help you feel happier as well as sleep and think better on a long-term basis. It has shown me that it is more than just a tool- it’s an excellent way to learn not just about MS but about yourself as the person you never thought you could be.  As such, the MS voice in my own blog has ‘grown up’. I have been recognised by Everyday Health for having “a more jovial approach to MS while consistently ending posts on a happy note”. This is how I feel about my life with multiple sclerosis now. An often slapstick version of what an elegant woman should be like in an often-hilarious back-and-forth between MS and me. Writing and MS have given me so much more than just giggles. This year has been very eventful what with changing DMTs and writing about it in ‘3443 Needles’. Quite unexpectedly, I won the 2018 Best Blog Post award in the Ireland Blog Awards competition last week, something I never thought possible.  MS and writing? Definitely something to consider! Check out Willeke’s blog Ireland, MS and Me

    Author: Willeke Van Eeckhoutte - 02 Nov 2018

  • Photo for article: A Dozen Reasons to Book Into the MS Ireland National Conference

    A Dozen Reasons to Book Into the MS Ireland National Conference

    Six of our MS & Me bloggers attended the National Conference last month. They tell us why they’ll be back again next year. In September hundreds of people with MS left their homes and traveled to Athlone to attend our national conference. The day prior most of the speakers who presented to us had spent the day with various healthcare providers, educating them on various aspects of the diseases and living with it. For those who could not attend, we had a live stream going out across the interweb to the whole world. Having the caliber of researchers in one room for people living with the diagnosis of MS, their family, friends, and co-workers was beyond brilliant. To mingle around others who know exactly what we’re going through and not have to explain – Important. A good number of the MS & Me team were in attendance and wanted you to know what they learned and why they’ll be attending the event next year. Perhaps these reasons might spark you to mark your diary for 2019 as well. 1. Use it or Loose it! As much as we hate to admit it, exercise is important, keeping the brain active (reading, writing, crosswords, games and discussions), and even standing rather than sitting are important in maintaining a healthy life with MS. Physical exercise can even improve the plasticity of the brain, slowing cognitive issues. 2. Take your Vitamin D! Think of it as a mandatory supplement for people with MS, for their families, and particularly for their children. 3. Advocate for yourself. Multiple sclerosis is not a one-size-fits-all illness. People living with MS have to realize that we know our bodies and our disease better than anyone else does.  Don’t be afraid to question the Neurologist’s advice and recommendations, and to ask for more information. 4. The importance of Brain Health really is not promoted enough (or at all) in Ireland. Services we have here are dire relative to most of the rest of Europe. An initial neurology appointment should happen within 4 weeks. It takes many of us 8 weeks to simply get a prescription. 5.  Words like “Palliative Care” and “Advanced Health Directive (AHC)” may seem like frightening words, but they are not.  Palliative care is not necessarily end of life related. It’s about managing a condition with available tools. AHD are a way of letting our wishes be known to those we love. ADH should be discussed and updated regularly. 6. Early and aggressive intervention and treatment means better long term prognosis. Time lost is brain lost. 7. People who are engaged with MS research and MS resources live measurably better lives with their disease. Get engaged. Stay engaged. 8. Socialising can be as beneficial to brain health as crosswords.  Granny always said that a cuppa with a friend was good for you 9. The genetics of MS are fascinating, and the island of Ireland has a wealth of knowledge to share with the rest of the world about the genetics of the disease. 10. Smoking is bad for MS. Like really bad.  If you don’t smoke; don’t start.  If you smoke; quit. If you’ve quit but relapsed into the habit; quit again… Now! 11. Some of the great minds of our age are focused on MS. Researchers from around the world came to update us on where their work has progressed and what they expect in the next years. Really remarkable stuff going on out there in the world of MS research. 12. Connecting with others with MS is important and really fun! The evening before the conference gave us a chance to get to know each other, compare stories, and have a laugh. Interestingly we all seemed to see the funny side of our crazy capers with MS and can understand one another about the difficulties. Oh, and it's a cognitive workout! We hope to see more of you at next year’s conference.  It’s not about the big bad wolf of MS… It’s about the lot of us in the brick house, working together to find our best life. Multiple sclerosis or not. Watch presentations from the day: Professor Gavin Giovanonni: MS Overview and Quality of Life. Watch here >> Dr. Jens Bansi: The Importance of Neurorehabilitation in MS. Watch here >>  Dr. Sabina Brennan: Healthy Brain. Watch here >> Dr. Kate O’Brien, Genomics Ireland: Identifying specific patterns in genes in people with MS so as to develop new diagnosis tools, treatments, and better our understanding of disease progression. Watch here >> 

    Author: MS & Me Blog Team - 26 Oct 2018

  • Photo for article: When I Had To Stop Working

    When I Had To Stop Working

    This week, Joan Jordan champions her professional revitalisation and shares with us all the joys of returning to the workforce.  Sorry for the spoiler in the title. You already know how this one is going to play out. Girl studies hard and gets a computer science place in Trinity College. Girl works her arse off and builds a nice little life for herself and her family. Girl is winning. Girl firmly believes that bad things happen to other people. She has plans, you see…… Mike Tyson nailed it when he said, “everyone has a plan ‘till they get punched in the mouth.” Next thing- girl is punch drunk and wondering how on earth she got into this position? More importantly, how was she going to get out of it? When the editorial team asked me what they wanted to write about this week, I must say that I felt a bit anxious. I still feel shame over having to throw in the towel and stop working in 2009. I didn’t get formally diagnosed until 2010 and until then, lived with the unsettling conviction that something was really, really, really, wrong with me. I HAD to stop working. End of story. It was destroying me every day. Not knowing what was destroying me made it even worse. People like explanations and I just did not have one to give. I didn’t realise how important having a job was to my standing in society. It’s one thing to stop working as a lifestyle decision – another entirely when you feel forced into it. People ask difficult questions. Social outings and meeting new people became awkward. I also felt terribly guilty about not having my own money. Actually, the story didn’t end there. After chasing a lot of dead ends, I retrained and now work 15 hours a week from home. I do my work in the mornings before cog-fog sets in. My business card says that I am the EUPATI Content Coordinator. I love my job and do not take it for granted for a second. I’m even happy to be back paying taxes! Long story short, it was not easy to get back into gainful employment, but it is possible. If one good thing has out of all I went through when I had to stop working, it’s that I learned more about compassion. Being kind is important (and that includes being kind to yourself). Don’t judge others when you are not standing in their shoes. If you feel that you are stuck in a situation through no fault of your own- seek help. I’m glad I went to Citizens Information to find out what my options were when I had to stop working. Dedicated to MS Without whom this blog would not have been possible.

    Author: Joan Jordan - 19 Oct 2018

  • Photo for article: MS and The 2019 Budget

    MS and The 2019 Budget

    Before Budget 2019, Helen Farrell shares her opinion on the financial challenges of living with MS and how the Irish State can truly support people. Our government ministers have an unenviable task in preparing our 2019 budget. Not only do they have to cover existing commitments but they also must plan for future contingencies and emergencies. Ireland has never been good at investing properly in the future and is bedevilled with transport, housing, education, social welfare and health systems that are full of historic quick-fixes and panicked responses to crises and outrages since the foundation of the State. Investing in proper preventative planning usually takes more resources and a longer-term view than ever seems achievable to our governments; to the despair of many.  It’s understandable that buying the approval of voters and ensuring a positive next election is very important for political parties; few go into politics to be in opposition. Our elected representatives have a duty to balance the health, housing, education, welfare, transport and environmental needs of Irish citizens with the money they have available, and to enhance people’s lives, not necessarily their pockets.  People with MS would love our politicians to sit up and notice that our neurological services are woefully underfunded and do not compare at all favourably with the rest of Europe, or indeed globally. MS is something that arrives in our lives uninvited and makes itself at home for life, often damaging our earning potential and costing us in so many ways across our lifespan. With access to good healthcare, medication, rehabilitation and support, life can continue for many of us in a productive way (albeit changed) but only if we receive the proper support. It is false economy to stint on these supports. The more support we have when living with MS, the more we can continue to remain engaged with life, earning and contributing financially and in voluntary ways and putting less of a financial burden on the State. It makes good financial sense to invest in MSer’s and conversely very poor judgement to limit services and supports. A severe MS-relapse or disease-course is far costlier for our healthcare, social welfare and other systems to deal with than the optimal situation of keeping a person with MS as healthy as they can be.  At a personal level I am still angry at the election promise reneged on in 2013, to give all people who hold the Long-Term Illness Card an automatic GP Visit Card. It would have made life much easier for us all with MS. Keep us well and we’ll be more productive, for longer.  MS Ireland’s pre-budget submission makes for sober reading (read here). The key asks of MS Ireland for Budget 2019 involve proper investment in neurology services, neurorehabilitation, community services and housing adaptation, as well as automatic entitlement to a GP Visit Card.  Although our Social Welfare services can provide good support for those of us who can’t work full-time or at all, more needs to be done to “make work pay”, although I personally dislike that phrase. There’s a whiff of the opinion that people who access Social Welfare are choosing not to work when they weigh up the financial “benefits” in favour of a life of State support.  Nothing could be further from the truth for most of us. We are trying to hang on with grim determination of any remnant of our former pre-MS working lives, reinventing ourselves, constantly adjusting and trying to outwit this disease.  Another area that MS Ireland would like addressed is the amount of income disregarded when applying for Medical Cards. In people with MS on lower incomes, the disregard should be far higher, due to identified higher costs of living with MS.  It is an exciting time in terms of new treatments emerging for MS. There have been quite a few new disease-modifying medications licensed in recent years that provide greater efficacy against MS, and the promise of more to come. New and innovative medications cost money and the government need to ring-fence spending to cover this for the future.  All in all, a lot for our government to consider. But short-term planning benefit nobody and makes no prudential sense in the long-run. What we need now is our government to focus on playing the long game; just like MS does with us.   

    Author: Helen Farrell - 08 Oct 2018

  • Photo for article: On Being a Woman with MS

    On Being a Woman with MS

    This week Rosie Farrell shares with us what it is like being a woman with MS. There is one representation of women in the media; thin, beautiful and definitely not disabled. In fact, as representations go, women living with a disability are invisible - a bit like the way our illness often is.  In my early 20s, I was career-driven and exercise obsessed. I wanted it all and I worked the crazy hours and exercised during the others in a bid to earn those labels. My idea of a work-life balance was to spend my spare hours on a cross-trainer. I wanted that perfect, strong female body we see all over social media. I analysed every inch of my flesh and no matter how much I exercised, how much the numbers kept reducing on the scales, I still hated how I looked. Why would I think otherwise? I didn’t grow up in a world that taught women to love themselves. Then I developed a disability to go with it and as MS slowly crept in to steal my mobility, exercise turned to something I did for how it made me feel and not for how it would make me look.  Recently, I put on my jeans and discovered they were too tight. I was ecstatic because I realised - after spending so long using a wheelchair and a stick and being unable to walk far, having watched my weight plummet and my muscles slowly waste away - the tight jeans meant that through all the physio and swimming, I finally had muscles again and that was something to celebrate. As I gained muscle, the numbers on the scales increased and before panic could set in, the scales found their way to the bin and my confidence as a woman soared. As women, all too often we are defined by how we look, and it took me getting MS for me to stop defining myself that way too. Now, I look in the mirror at my untoned body and I hug myself because this body has been through a lot and it deserves my love. I deserve my love. I fight chronic pain and fluctuating mobility levels and yet it’s still MY body. It’s mine to be proud of and to celebrate and to get frustrated with. It is not society’s to label. Exercise is sold to us on the grounds of how many calories we can expect to burn in a session. Fashion is sold to us as clothing only those with the most toned bodies will look good in. And disability aids are sold to us as something only older people need. At first when I started using mobility aids, I felt like I no longer fitted in anywhere. Where was I represented? Because I now used a stick, did that mean I was no longer stylish? As a woman with MS, I’ve had to challenge a lot of society’s labels. And as I settle into life as a wife and I move into a new chapter, those labels expand. I would be ignoring the elephant in the room not to touch upon the topic of having children. That’s something that will only be possible for me if my pain and spasticity could one day be managed on a minimal amount of medication. I’d be lying if I said it doesn’t worry me but it’s not something I’m physically in a place to challenge, and that’s not to say I won’t ever be.  I’m learning that because I’m a woman with MS, a woman with a disability, I am also still a woman with a career, I’m still sexy and beautiful despite the mobility aids and the lack of high heels. I am still a valuable human being if I end up not being able to have children. I still have a voice that deserves to be heard. In fact, as women, we are far more than the many labels society pins on us. And as a woman with MS, I’m finally learning to value me. And a woman who believes in herself is an unstoppable force. That’s a label I’m happy with. Rosie Farrell is a sub-editor and designer with Irish Country Living and the Irish Farmers Journal. She blogs at www.sherunswithms.wordpress.com

    Author: Rosie Farrell - 27 Sep 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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