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

  • 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

  • Photo for article: Holidays and MS

    Holidays and MS

    Now that the same sex marriage referendum is over, #holidayplans is currently trending in my world. “Are you getting away this year?” is the hot topic! Before MS entered my life, holidays meant something very different. Having spent 51 weeks of the year chained to my work desk, I wanted to get as far away as possible and pack as much activity as I could into 7 precious, hectic days. While I am so glad that I did the bungee jumps and the jungle hikes, my first holiday with MS was a bit of a disaster. I think that I thought I would be able to leave my disability at home and got very cross when I realised that it just doesn’t work like that. We had decided to go on a once in a lifetime trip to Florida. I was exhausted before I had even passed through the gates of the Magic Kingdom! I will never forget the feeling of frustration. I wanted to do it all and then some more- but my body just refused to cooperate. The heat and fatigue from the journey left me exhausted- which led to frustration at my MS. It felt awful to say that maybe I would just “take a rest” when there was serious Disney fun going down. I’m sorry to say that the cranky-pants stayed on for the rest of the trip. After that, we didn’t attempt another airplane holiday for a few years. Partly because we were still paying for Florida but mainly because I hadn’t gotten to grips with the fact those holidays with MS need a few tweaks to make them work. You can find some great, practical tips here My personal advice is to think about your MS and how it affects your daily lifestyle. If you apply these restrictions to your holiday plans- things should run smoother. For example, I have energy in the mornings and then fatigue kicks in as the day goes on. So, I try to book early morning flights and plan activities for then. The afternoon is for siestas and writing postcards. You could see it as giving into MS but fighting it sure didn’t work….The alternative is to stay at home with my photo album and reminisce about holidays past. Last week Declan, my MS & Me blog buddy wrote about MS and guilt. Earlier on in my illness, I did feel this negative emotion about going on holidays. I felt like I didn’t deserve to take a break if I wasn’t earning a wage. The desk job did have some perks after all! I discussed this with the people I care about and we worked through it. It is so important to be kind to yourself and accept that your life has changed. This blog is about making the most of your holidays with MS. I wish it could be about taking a holiday from MS. I would probably spend that one running up and down stone steps like Rocky Balboa! Do you have any tips on how to make things as fun as possible when you are away? I’d love to hear them. Send me a postcard!!!!  

    Author: Joan Jordan - 11 Jun 2015

  • Photo for article: Guilt! Irrational, Illogical & Unreasonable?

    Guilt! Irrational, Illogical & Unreasonable?

    Greetings fellow travellers on the long, winding, pot hole strewn road that is Multiple Sclerosis! Have you ever sat at home doing absolutely nothing while your significant other was busy doing housework or other necessary jobs like gardening? Did you ever get that uninvited thought run through your mind like a ‘Will O’ The Wisp’ flitting around inside your head “If only I could do more?” And then the thought vanishes almost as quickly as it appeared. It is then replaced by a healthy dose of realism. All those trite one-liners spring to mind in rapid succession; wake up and smell the coffee, get real, get a grip. Realistically there’s not a chance of that happening. The spirit is willing but the flesh is weak. Jean and I have been married since 1979 and I was diagnosed with MS in 1988. There are times when I still feel peculiar about not ‘pulling my weight’ in the household. It’s not really guilt but it’s very close. Maybe it’s more a male hunter/gatherer thing and the consequent feeling of inadequacy and inability to do’stuff’. Jean knows as much about MS as I do and my ‘idleness’ is never an issue for her but sometimes it’s an issue for me. This is one facet of MS Guilt. There are a large variety of symptoms associated with MS and I think that I have escaped very lightly with my particular MS. I feel peculiar about that when I meet other people whose MS has progressed more rapidly than mine. This absolutely illogical because I don’t feel jealous when I meet others whose MS is less debilitating than mine. In fact I wish them well and hope that their wellness will continue far into the future. Another facet of MS Guilt? I go to the gym a number of times a week for 30 to 45 minute sessions. I’m working hard to stay as fit and mobile as possible but the gym work is not translating into ‘house fitness’. I feel guilty about that. Am I being selfish in maintaining my gym regime? 30 minutes in the gym requires 2 -3 hours rest after. Would I feel less guilty if I did 30 minutes of housework and then rested? Probably. More MS Guilt? These guilt thoughts usually manifest themselves when I am feeling less than 100% and they are usually short lived. I don’t feel guilty for having MS and on an intellectual level I know that the guilt I sometimes feel is irrational and illogical but I can’t do anything about it. Or can I? If you agree with the premise that worry is a waste of time then MS Guilt is an even bigger waste. Can anything be done with these useless, energy sapping, feelings? Mindfulness and Yoga are good weapons in the battle against MS Guilt.  Does anybody else feel like this? And if so, what do you do about it?  

    Author: Declan Groeger - 04 Jun 2015

  • Photo for article: Access to UNCRPD

    Access to UNCRPD

    Access to the UN Convention on the Rights of Persons with Disabilities When people hear news related to the United Nations, they immediately think of countries at war or of those in third world regions that need humanitarian help. But what if I told you that people with disabilities in Ireland might be in need of other forms of humanitarian access and assistance? What if people with disabilities here are not truly supported by a United Nations structure that could see their rights genuinely protected? What is the UNCRPD? The United Nations Convention on the Rights of Persons with Disabilities is a very important human rights treaty aimed at protecting and promoting human rights of people with disabilities, and was adopted by the United Nations General Assembly in December 2006.  From March 2007 onwards, countries have been able to ratify the Convention and in May 2008, the UNCRPD entered into force, certifying the rights of some 650 million people with disabilities worldwide.    Why have a Convention? Because people with disabilities were being denied basic human rights, they remained on the side-lines of society. With a framework such as the UNCRPD, people with disabilities have a legal, binding structure that says that the same rights on dignity, autonomy, equality, independence, accessibility and inclusion apply to themselves as well as to able-bodied people. While the Convention does not create new human rights, it does give much clearer responsibilities and obligations to countries to promote, protect and ensure the rights of persons with disabilities. Some examples of these specific rights recognised by the Convention are: Equality before the law without discrimination; Right to respect physical and mental integrity; Right to health; Right to work; Right to an adequate standard of living. What does ‘ratification’ mean? Ratification is the official confirmation whereby a state indicates its consent to be bound by a treaty. It shows a country’s intent to undertake legal rights and obligations contained in the UNCRPD. How does it work? On a national level, governments are required to improve and safeguard disability policies mentioned in the Convention. Laws and policies that are seen as discrimination need to be abolished. Independent bodies such as a Human Rights Commission or Ombudsman’s Office, as well as other parties such as courts must see to improving national disability policies.  Internationally, a Committee on the Rights of Persons with Disabilities which consists of worldwide experts, monitors the implementation of the Convention.  Some of the general obligations countries have to adhere to: Protect and promote the rights of persons with disabilities in all policies and programmes; Stop any practice that breaches the rights of persons with disabilities; Ensure that the public and private sector respects the rights of persons with disabilities; Undertake research and development of accessible goods, services and technology for persons with disabilities and encourage others to undertake such research; Consult with and involve persons with disabilities in developing and implementing legislation and policies and in decision-making processes that concern them. What about Ireland? By signing the CRPD in 2007, Ireland became party to the Convention, showing its intention to take further steps to commit to the treaty at a later date. Signing also created an obligation to refrain from acts that would defeat the object and purpose of the treaty (in the period between signing and ratification). When Ireland slipped into recession in 2008, it created Spartan budget cuts to people with disabilities, but the disability community needed to know that it was not seen as a burden on society. After all, there was an enormous governmental rescue attempt trying to save the civil service, so why not trying to protect the weakest in society? Recession simply cannot be used as a legitimate excuse for non-ratification. It would sound believable if it were happening in deprived countries, but not in our post-Celtic-Tiger era. In fact, Ireland never left the top 20 of the richest countries in the world during the recession, and is now in the top 15 again (GDP per capita, measured in int$). Irish non-ratification still denies people with disabilities access to dignity, autonomy, equality and inclusion. In perfect 20/20 hindsight, had Ireland ratified the Convention during the recession, harsh budget cuts to existing services without creating new or better alternatives would  have  been a breach of Ireland’s obligations under the CRPD. Regardless of the lack of ratification, Ireland still has obligations under the UNCRPD because of the EU ratification of the CRPD. In other words, Ireland breached its EU obligations also. Since 2007, the Convention has seen 156 ratifications/accessions. Ireland has the 2007 Convention Signature Date. As for the rest? Countries like Azerbaijan, Bolivia, Guatemala and Turkey have signed and ratified the Convention, and are doing far better than Ireland. So come on Ireland, get your act together! Why the delay, then? Absolutely, our previous and current governments have been very lackadaisical. According to Dáil Éireann and the Justice Department, the delay is caused by the ‘Legal Capacities’ legislation as this law needs to be introduced first to provide a basis where ill people can make decisions for one’s self. Nonetheless, I suspect that Dáil Éireann’s non-ratification has very little to do with this legislation or with other archaic laws that stand in the way from ratifying.  What Dáil Éireann seems to forget, is that the UNCRPD is one of the most essential human rights treaties of the 21st century. Their stalling is a disgrace of monumental proportions to people with disabilities, past, present and please god, I hope not to those who at some stage in their life, might run into that vast brick wall of governmental disrespect. The need for ratification to strengthen the rights for People with Disabilities is not just an idle phrase. We are not a word in a dictionary, we are people with rights and we will continue to use that voice until we see Irish ink under that ratification. So, how about it, Dáil Éireann? We want access to a legal status and see our rights of persons with disabilities confirmed. Ireland needs to strengthen its respect for these rights. What greater gift can you give a person with disabilities in Ireland than the notion that we are protected and cared for by our government? We simply refuse to stay on the side-lines of society any longer. http://www.strongerthanms.ie/stronger-than-ms #strongerthanms #WMSD2015 @WorldMSDay  Text STRONG to 50300 and donate 4 euro  

    Author: Willeke Van Eeckhoutte - 28 May 2015

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