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

  • Photo for article: Benefits of Engaging with Other MSers

    Benefits of Engaging with Other MSers

    Recently I've had a few young people who have been recently diagnosed with MS get in touch. I'm always happy to hear from people, because on of the most common themes I see emerge when these young people start to open up is the isolation they feel post-diagnosis. It's hard to be the only one in your family, your friends, and your peer group that has MS. It sometimes feels like nobody understands.   I can't recommend engaging with others in the MS community highly enough. I was diagnosed in my early twenties. I will admit, although I accepted my condition, I did not want any interaction with MS 'groups'. I felt that if I went to an event, to a meet up or coffee morning, that I would be faced with a visual reality of what was in store for me in the future.   Diagnosis can be a very scary time and that 'newly' diagnosed stage is sometimes hard to cope with. I felt I did not want to walk into a room of people who were more affected by MS than me. As scary as things were, they were in my head and I had no visual confrontation with the disease as such. I knew the possibilities and I didn't wish to have anymore to do with what could happen. I guess I was always afraid that going to meet other people with MS would be too real. It would bring it all home, and instead of the blissful ignorance I had, I would have to face the facts.    Initially, I wanted to keep things in, I didn't feel like anyone else would understand how I felt. None of my friends had MS and despite their best efforts they would never see things like I did.  After sometime I did feel it would be beneficial to meet other people with MS. Human connection is hugely important and there is great comfort in knowing that there are other people in situations similar to your own. So as I spoke to more people I began to crave more and more. I met more people, of various ages, with various symptoms and levels of ability, and I saw that it's not only the people who are doing well and keeping symptoms at bay who are strong, it is also the people who are carrying on and living life regardless of the symptoms they may be experiencing on a daily basis. They have so much more to cope with and they do it and carry on with their lives too.  It occurred to me that I was the weak one, the one who didn't want to interact with these amazing people, out of fear, fear of what the future has in store. I can honestly say that if I follow the same disease path as many of the people I have met, and deal with it as gracefully as they have, then I will be incredibly proud of myself. Everyone has a different disease path, but we are all on the same journey. Sharing that journey with others makes it so much easier. You can learn so much from a seasoned traveller.  I think if I was living with MS in isolation from other MSers I would still be scared of the future. But confronting that fear has only made me stronger. I want to keep myself as well as possible, and listening to the advice of others (and separating the good from bad advice) has really only served me well. I think it is crucial for young people to engage with other young people too. We are all in a similar stage of life, so themes are relevant to us all. We can share with, learn from and help each other. There is strength in unity and what I would like is increased visibility of younger people with MS. When the average person thinks of someone with MS, I think they immediately picture a 40/50 something year old, but in reality there are lots of young people who live with MS and by increasing the visibility of that group, we can do so much. By acting as a united group we can strive to achieve change where WE need it, support with education and training, family planning, employment, mental health services, insurance, to name but a few issues. How can we expect to have services for younger people if we don't make it obvious that we exist? We need to clearly state what it is we need. What do you think we need to try focus on changing? What would benefit you as a person living with MS? We are all strong, none of us are better than any others. We all have our strengths and weaknesses and we can learn from each other. My advice is to engage with others on a level you are comfortable with. We don't need to dwell or focus on the negative possibilities. We just need to support each other, and that support happens so organically when you engage with others.   Further reading Atlas of MS

    Author: Aoife Kirwan - 23 Jul 2015

  • Photo for article: Individual Health Identifiers

    Individual Health Identifiers

    I don’t remember too much from the day I got diagnosed in the Lourdes Hospital but I do recall the doctor telling me that I would have to learn to manage my MS. Back then, I didn’t even know what a sclerosis was but I suppose that over the years, I have learned to get along with my lesions- always conscious of the fact that I am at their mercy. I try to get the best out of a bad situation and keep on top of current treatments, research and therapies. For some reason, I assumed that my illness would in turn be managed by the doctor who diagnosed me. I expected that in 2010, my illness had been registered in a massive patient database providing an online health record for every Irish citizen. I figured that the numbers would then be crunched to provide data to help plan for research, pharmaceutical and services departments. This data would be accessed when I went for any type of medical treatment so that my health status was clear to all stakeholders. Think of Big Brother for ill health…. I was shocked to find out that no such register exists! As it stands today, we do not know how many MSers there are in Ireland. There is no official HSE record. The estimate is around 8,000 but we just don’t have an exact figure. I can imagine that all kinds of data could be extracted if the information was centrally stored and analysed. The HSE does have a plan to introduce Individual Health Identifiers in its 2015 Health Priorities and the project is on track to be delivered this summer - http://www.ehealthireland.ie.  The question is “why is this only being done now?” There are probably all kinds of financial, technical and data protection issues involved but as a patient, I am more concerned that the wheels get greased and that an Irish patient register gets up and running. If Irish Water got our personal details so quickly- despite massive public disapproval- why can’t the recording of health data be expedited in the same way?  I’m just sayin’!

    Author: Joan Jordan - 17 Jul 2015

  • Photo for article:  MS Has Changed My Vision

    MS Has Changed My Vision

    Sometimes we don’t see things as clearly, some things we see more sharply.  One thing that is for certain, MS has changed the way I see things…  Multiple Sclerosis – the insidious thief of a disease that it is – can and has taken much from me.  It has taken functions, it has robbed me of strength, and it has stolen stamina.  MS has replaced feeling with numbness, abilities with disability, and self-reliance with dependence. Multiple sclerosis has also changed my vision. More than just the nystagmus - which can have my eyes shaking in their sockets - or the double vision when I’m overtired or overheated; MS has changed the way I see things. I no longer see a lot of the ‘big picture’ issues of the world as one image; rather as a mosaic of individual lives and stories. The tapestry of compromise politics I now see as individual threads woven for the good of one person or group over another. I see the underdog not as superhero but rather as the humble shoeshine boy simply trying to get on with life the best he can. Sometimes I see the journey from bedroom to bathroom as my marathon. Other times I see the simple task of writing a cheque as complex calculus. And always, just outside of my peripheral vision’s ability to focus I see the possibility of my next MS attack. This change in my vision, brought on by living with MS, has also keenly focused my gaze on the positive things that happen in our world. I now see how one person can, indeed, make a difference in the lives of another or even in the lives of many. I see the value in the simplest acts of kindness and the worth of every person no matter their relative ability. I see the importance of living with purpose and intent.  I can see the results of small groups of committed people trying to change their world. I also see things differently in the mirror. Surely the body and face of the man looking back at me is changed by both MS over the years and those years themselves. The body is changed by infusion after infusion of corticosteroids and limited activity. The hair is course and gray (and thinner) after years of chemotherapy to fight this disease. But the smile is a wry, knowing smile of someone who has won the battle of another day and has a plan for the next. I am not the man I was over a decade ago when I was diagnosed.  My body is not the same, my life is not the same and my vision is not the same. I see shades of gray where white once met black. I see possibility where I use to take success as a foregone conclusion. I see kindness in the smallest places and self-servers in the highest offices. I also see the importance of those who create and hold our megaphone to help us get our words to the world. I have lost sight of some old goals and aspirations after the mist of multiple sclerosis made them all but impossible to once again find. Now I focus on new milestones, on a future for the next generations and on success in arenas I never thought to play. Multiple sclerosis has changed my vision.  It changes the way I see, what I see and the things I look for. The view isn’t always what I’d like to see in my life. But it sure is better than closing my eyes altogether. 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 - 09 Jul 2015

  • Photo for article: So, How’s The Book?

    So, How’s The Book?

    “Oh, it’s getting there. Slowly but surely, and right now just a tad slower than usual…” The idea of writing of a book solely about my experiences in Ireland gradually changed into a book about Ireland and MS, but the physical writing took a bit of a step backwards. There is a huge ambition to finish it, but after two busy months, I have an over-abundance of low energy levels. Writing so, is currently on a holiday, although I do expect my fingers will be dripping ink soon enough. It’s funny how life can take so many unexpected twists and turns. It’s even funnier when you realise that time really does move on, how it shows its kindness on relationships of any nature. Ireland, being a matriarchal country, is absolute proof of this. Having the right people in your life cannot be stressed enough, and especially so if you live with a chronic, degenerative illness. If Ireland taught me anything in the last 12.5 years, it’s that people, no matter who they are, can be your rock in whichever situation you find yourself in.  Like all cowards, the illness I write about lurks in the dark within my central nervous system, and sometimes rises to the surface in somewhat unflattering ways. My body does a good job in concealing it for now, but every so often I worry about it rushing to the surface and staying there… permanently. Just a few days ago, I wanted to get my grocery shopping out of the way as quickly as possible. Totally out of the blue, however, a very loud bang sounded in my local shopping centre. In a matter of nanoseconds, I yelped, grabbed the left side of my face and thought, ‘Oh no, not again!’ Trigeminal neuralgia literally slapped me in the face once more. Intense facial pain is one of those MS symptoms that is still unknown to many, and very misunderstood also. Your face feels like it is being hammered by a surface drilling power tool, on and off. Since that day, it’s been difficult trying to get rid of the returning stabs of pain, and once again I’m in hiding.  Not surprisingly so, it blackens moods when it arrives, and brightens faces when it leaves. It feels like being chained to a constant shapeshifting entity that understands no reason aside of its own. My body should show who I am, not who I’m not. Not yelping after hearing loud, sudden noises, strong lights, brushing teeth and speaking.  There is no single theory that gives us an inkling why we live with that unequal and accidental guest. We have no Albert Einstein or Stephen Hawking to concoct more lasting theories. The laws of nature are few, and they are even fewer in the world of MS. So, yes, life with MS is complexity in all its forms, and finding the theory of why MS even exists will someday be an enormous achievement.  Nonetheless, I find near-beauty in its complexity, honour in its demise- if and when it comes, and inspiration in our most difficult days. The “Why me?” theory may be incomplete for now, but the friendships, relationships, experiences and love I found because of it, will last. And that’s how I feel about MS Ireland also. The society and everyone I met through them feels like my extended family, and a family away from home. Last year, I met a group of fellow writers through the society. In my mind, we were almost 100% alike and we all wanted the same thing: raise awareness and show the daily struggles of life with MS. A small group, but one with large and bright outlooks on life. Since then, I feel my life has taken off in a way I never imagined.  And the book I am writing? Yes, they will feature also.  If or when you need MS Ireland's help, do reach out on 1850 233 233, via email on info@ms-society.ie, Facebook, Twitter as together, we really are stronger than MS. For Ava, Diana, Olga, Karen, Joan, Lucina, Trevis, Declan, Aoife, Niamh, Helen, Emma and the many others that have crossed my path the last 1.5 years. 

    Author: Willeke Van Eeckhoutte - 02 Jul 2015

  • Photo for article: A Patient’s Overview

    A Patient’s Overview

    The 4th International Patients Summit  The conference was addressed by six speakers; Sir Nick Partridge, Antonella Moretti, Dr Vittorio Martenelli, Aliki Vrienniou, Mary Baker MBE, Jean Hardiman Smith. The conference was concerned with patient rights in research and treatment, influencing the direction of healthcare decision-making and the ‘expert’ patient. Research was discussed by two of the speakers and we were told that as much as 30% of clinical trials were cancelled due to insufficient numbers of participants with as much as 85% being delayed for the same reason. People were unwilling to enter trials for a variety of reasons with side-effects being a major factor whilst older patients or patients without children were more likely to take part. It was also noted that trials now require more participants and they run for longer. It can take up to 12 years to get a new medicine from bench to patient. Approximately 50% of MS patients were willing to consider taking part in a trial. Medical professional need to be good communicators and learn to use common language whether at time of diagnosis or when discussing treatment options. We were told of the astronomical increase in medical cost associated with brain disorders in Europe which have increased from €386 billion in 2004 to €798 billion in 2010. Can this level of spend be maintained with the ageing world population? We were told that 60% of the NHS budget is spent on lifestyle issues e.g. smoking, alcohol, obesity etc. To my way of thinking Irish figures won’t be too dissimilar. How can that proportion of spend be changed? We need to develop ‘prevention’ models rather than treatment strategies where possible. We need to develop a strategy where the stakeholders i.e. patient and researcher take part in the process and in that way the ‘payers’ will get better value for money and there will be better patient outcomes. Healthcare should be treated as an investment rather than a cost.  The ‘expert’ patient was discussed. I am an expert in my pain and my symptoms and what I really want is to be able to communicate these to friends, family and professional. I need to know that they hear what I am saying and actually listening to me. I need to feel valued. I need to recognise my limits and operate within them. This sounds a lot like ‘self advocacy’ to me but a “rose by any other name...” Whatever we call it, it works and more people need to become expert patients. It doesn’t take long and the rewards can be tremendous. References: The 4th International Patients Summit was held on Friday 22nd May 2015 in the Hotel Barceló Aran Montegna, Rome. It was attended by 90 delegates for 24 Countries. Representing Multiple Sclerosis Ireland: Aoife Kirwan, Niamh McCarron, Declan Groeger Willeke Van Eeckhoutte, Lucina Russell

    Author: Declan Groeger - 25 Jun 2015

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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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