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

  • Photo for article: MS Doesn’t Stop Me

    MS Doesn’t Stop Me

    To say that 'MS doesn't stop me', I'm lying, or at the very least, exaggerating. To be more accurate, I can say, unequivocally, that I do my very, very best to not let it get in the way. Lucina When the 'MS & Me' blogging team were picking topics to write about earlier this year, I was very much inclined towards this topic 'MS Doesn't Stop Me'. But it's been one of the hardest blogs to write. Why? Because if I say that 'MS doesn't stop me', I'm lying, or at the very least, exaggerating. To be more accurate, I can say, unequivocally, that I do my very, very best to not let it get in the way.  It’s almost 5 years to the day since the high drama, which led to my diagnosis with MS. So, it’s an opportune time to reflect. Of course, I’m a different person now. The fabulous 40 came and went and I’m very comfortable in that skin. But the wearing of the MS jacket, bespoke and tailor made just for me, doesn’t sit easy. And I won’t let it.  As a ‘typical Russell’, I may be considered opinionated, passionate and stubborn. Who wouldn’t want such fine attributes? One thing for sure. My obstinate DNA has come in useful in facing a chronic illness. But, damn it, it’s tough being tough all of the time. And exhausting too, which isn’t great for someone who is sometimes flattened by fatigue.  I had a notion a while ago where I decided that, in fact, I did not have MS, that it had been a rather unfortunate, false alarm. Just like that, by mind over matter, I cured the incurable. I had achieved what the medical and pharmaceutical people could not. I’d give up my harsh medication. No more poxy injections. Family and friends would celebrate my good fortune. I had a feeling of euphoria. I couldn’t believe that I hadn’t thought of this sooner.   Unfortunately, that feeling didn't last too long and my symptoms came back to tap me on the shoulder, kick me in the shins and poke me in the eye, saying ‘I haven’t gone away you know’ and I had to temporarily admit defeat. I felt deflated. Looking at social media posts from other people with MS who had ran marathons or participated in Iron Man challenges made me feel like a total fader.   I hate using my illness as what I see as an excuse, but I had to put my hands ups, call time, throw in the towel and take some time out. I took a full week out of a very busy schedule and did as close to nothing as is humanly possible (in so far as you can when you have two 8 year olds to look after). It took two days to wind down, to not feel guilty about taking time out and to stop thinking of my illness as an 'excuse', but as a fact of life for me. That week I didn’t need to be Employee of the Week, Mother of the Year or any other accolade. I needed to just 'be'. It was the best thing I've done in years.   Now I'm back, fighting fit, gloves on. I'll always wrestle with having MS. But I have to stop fighting with myself. It isn't helping the battle.

    Author: Lucina Russell - 26 May 2016

  • Photo for article: Independence

    Independence

    This week Declan Groeger challenges perceptions and examines our idea of independence. Desire to be free is a driving force for innovation and personal revolution.  I was diagnosed with Multiple Sclerosis (MS) in 1988 and as the years have passed, my understanding of independence has changed. The most critical ingredient in the independence recipe is knowledge. I live my independence by making my own decisions. I don’t present my decisions as a fait accompli; there is always a discussion with other stakeholders in my life but the ultimate decision is mine and mine alone. Knowledge is power. There are two areas in my MS life where independence is crucial; Treatment and Assistive Technology (AT). Knowledge is power and we can empower ourselves by getting well informed. I must admit to not being fully informed in my earlier years on medication; this was partly due to the scarcity of information at the time but in particular due to my unwavering trust in the medical professionals. I didn’t address whether to go with medication or diet route until 10 years after my original diagnosis and then it was only after a 2nd opinion confirmed I had MS. There is such a mountain of information available that it can be difficult to separate the reliable from the unreliable. Social media plays an enormous role now as people from around the world can compare and contrast treatment options and discuss side effects in real time. The importance of a good medical team cannot be overestimated - your neurologist, MS nurse and GP all at the coalface with you. Pharmaceutical companies are different, as their prime motivation is to keep shareholders happy with large dividends and any of their claims should be treated with a healthy dose of scepticism. It is only by reading, learning, analysing and discerning that with full knowledge we can make informed decisions, maintain our independence.  The need for independence is often misunderstood and mistaken for stubbornness, I know that personally. Weakness in my legs was one of the earlier visible signs. At that time in my life I did not want to ‘link arms’ with the person I was walking with; I wanted to be me, to walk independently without assistance. I thought that people would look at me pityingly if I used a cane or other walking aid. Vanity? I now know that people looked at me as if I was drunk stumbling around the street and using walls for support. They couldn’t see my invisible illness but if I had a stick, people may have understood. Not using a stick was an example of my stubbornness; once I accepted my need and started using a stick, I became more independent in that I could actually walk without holding the walls! I’m not sure how many times suggestions were made but my family and friends accepted that any such decision had to be mine.  When my wife Jean and I went to Italy to celebrate our 25th wedding anniversary, my need for further AT became very apparent on the cobbled streets of Rome. I rented a wheelchair there and my acceptance of my need actually increased my independence. I had always thought that using AT was a sign of weakness, of frailty, but I was so very wrong.  Recognising the need of support shows self-awareness and strength; it is my recognition that I need support that has ensured my independence. Assistive Technology can be a liberator when accepted by the user.  The point of these anecdotes is that I made the final decisions on whether I use AT. I would have benefited from AT an awful lot earlier on my MS roadway but mentally I was not ready. But when I was ready, and once I reached that point, I embraced it wholeheartedly. If you’re a partner/wife/husband/friend of someone with MS, don’t just go out and buy a cane because you think they need it. Talk with them first.  I will decide when I am ready for my next piece of Assistive Technology. I am not ungrateful for your thoughts and kind acts and help but offer and help on my terms; this may be the only true independence I have left. I have maintained my independence over the years to such an extent that sometimes I fear I have alienated some of the good people who have tried to help me at different times. Family and friends have seen me labouring under my MS load and I obstinately refused offers of help. I am much more polite in refusing help now; I also accept help more often than I used to. Independence is worth fighting for and let me put the world on notice that I will continue fighting. Why do I value independence so much? Because I am human, because I am alive and being free is at the core of being human. There is also a bit of doubt- I don’t want to become a burden on my loved ones, my family and friends. Most fundamentally, I don’t want to place a stumbling block in my own path.  Tell me, what does independence mean to you?  Here is a great blog by Mitch Sturgeon on Assistive Technology which may resonate with you as it clicked with me.

    Author: Declan Groeger - 12 May 2016

  • Photo for article: Stronger than MS

    Stronger than MS

    This week, Joan tells us how she has become stronger than MS' 'Everyone has a plan 'till they get punched in the mouth.' - Mike Tyson. The first time MS struck- it was a no contest total wipe-out. I hit the canvas like a sack of spuds. It took me a long time to pick myself up and get back on my feet. Even so, I was petrified of another attack ambushing me and taking more than it did the last time. So, I lived in the shadows for a few years. I had little support and was in constant fear. I couldn’t even say the words Multiple Sclerosis. It’s a bit like being bullied. When my kids were younger, the best advice if they were being intimidated by another child was to tell a grown up and go play with someone else. Now they are reminded that it's not their fault, praised for speaking up, reassured that we will figure out what to do about it together, told to confront the bully and to go play with someone else. Tormentors don’t like being challenged. The logic is that the bully doesn’t want the hassle and moves onto pastures new. So, I decided to practice what I was preaching to my own children. I started building up an arsenal to stand up to MS. The first thing was to believe (REALLY believe) that it’s not my fault that I got this awful disease. Then I had to say 'I’m not scared' to the bully. I made myself promise to not give another ounce of worry over to what might happen and focus on what I can do to avoid another attack. I wanted to make my life good again. Straight away, a cloud lifted! Instead of wasting time worrying, I joined my local support group. There is never a dull moment in the MS Ireland Louth Voluntary Branch and I find that you get more than you give there. I have made lifelong friends and urge you to give it a go, if you haven’t already. Even having one other person who 'get’s you' helps immensely. My diet and lifestyle have much improved since I stood up to MS. I don’t binge drink or comfort eat nearly as much as when I was going through my dark days. I attend an excellent yoga class on a Tuesday morning. When I started, my cat posture was just that- cat! After a while, I have gotten the hang of it and my balance has really improved. I also find breathing exercises really helpful in stressful situations. I am very conscious that I don’t make myself out to be some kind of saint here. I’m not and that kind of talk helps nobody. Right now, there is a ceasefire between MS and me but my old scars still smart. I still find myself thinking about what might have been if I hadn’t gotten ill. I just got so fed up of MS controlling my happiness that I stood up to the bully and found some new friends to play with.  Back to the boxing clichés! MS hits us 'below the belt'. I have decided that I am not going to 'throw in the towel' because life can still be REALLY good. Together- we can be Stronger than MS.

    Author: Joan Jordan - 05 May 2016

  • Photo for article: Multiple Sclerosis Around the World

    Multiple Sclerosis Around the World

    In our lifetime the world has indeed become a smaller place. Odd then, that our joint experience with this disease is so varied…  Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. We know that. It is estimated that approximately 2 million people in the world have multiple sclerosis and about 9,000 of them live here in Ireland.  We know that too! While the exact course and combination of symptoms that any one person living with MS will vary, we can all say that we live within the same ‘boundaries’ of this disease. That is to say, we may all be travelling in different lanes, at different speeds and in different vehicles but we’re all on the same M50 of multiple sclerosis, no matter where in the world we are making that journey. We’ve all figured that out as well. What is different, however, are the circumstances, conditions and lifestyles that people from around the world travel on the MS highway. The global nature (and inequality) of living with MS has come into better focus for me. In the nearly four years since I moved to our remote corner of Kerry from Seattle, USA, I have had the opportunity to meet people living with MS from over 28 countries and from five different continents. We are all the same, but our commonalities often end at national boarders and regional thresholds. There is a massive effort underway to gauge these inequalities and improve the standard of care and services for those in direst need, while advancing research for better treatments and a cure. I am just back from presenting to a conference of online health advocates and bloggers called HealtheVoices in Chicago and will be off next month to Prague to speak at an International MS Patients’ Summit. I have seen first-hand the international similarities and differences, groups like The European MS Platform (EMSP), the Multiple Sclerosis International Federation (MSIF), the International Organization of MS Nurses, the Consortium of MS Centers and other groups are actively seeking ways to make all of the roads of the MS journey passable. In the last few years Ireland and MS Ireland have played an important role in raising both the bar and the floor in this regard. At the beginning of this month, for example, the International Progressive MS Alliance met in Dublin to assess progress and chart the organisations next important moves and my first experience with the International MS Patients’ Summit was in the Big Smoke as well! Much is happening around the world, much of what is happening in that world is passing through Ireland and the people of this country living with MS can be proud to know that we are not only being heard but that our voice is being sought as well. When I look at films like 'When I Walk' or 'MS Under Pressure' or read comments on my MS Facebook page, I see that the experience people have with living with MS varies as much as the symptoms of the disease itself. I am grateful that I have had the opportunities to live my life with MS on my own terms… as much as the stupid disease will allow. Because of that, I feel it is important that we work towards that day  - until the day we can all exit our MS journey – so that the road we all travel is equally smooth, our vehicles have parity and that no one lane outpaces the others in fairness, kindness and compassion. Wishing you and your family the best of health. Cheers Trevis Trevis' book, Chef Interrupted, will be published in the Ireland next Spring. Follow him on the Life With MS Facebook page, on Twitter, and check out his website.

    Author: Trevis Gleason - 22 Apr 2016

  • Photo for article: Bucket List

    Bucket List

    Bucket lists… things-to-do-before-I-retire… Many of us all have some sort of ‘list’ in our minds of things we want to achieve in life. This week Willeke lets us in on her list, how she uses it and the importance of having goals in her life.  The older I get, the more nervous I become of not being able to achieve all the things I set out to do. After all, every year rushes by, seemingly at a faster speed than the year before! Science is still to crack the code of becoming younger instead of older. And therein lies the problem if you’re a non-bucket-list achiever- at some point in life you will begin to think “Argh, if only I’d…!” done something. But the clock can’t ever be turned back. Being of the opposite kind, I yelped an “Argh!” when I realised I lost all my documents during a laptop crash last year, and I had to rebuild, rethink - or even worse - try to remember what was on my bucket list to begin with (Memory issues… ouch!). Having a bucket list is all about personal fulfilment, and it doesn’t really matter how short or long your list is, as long as it has/had substance over form. My list was/is filled with generic things I imagine many people would love to do- like swimming with dolphins or winning the lottery. Other personal dreams would to be in touching distance of wolves or have much-needed weight loss surgery.  Goals that have already been fulfilled are living in Ireland • Watch sunrise/sunsets on the west coast • Newgrange • WB Yeats’s grave • Rome • Venice • The rest of Italy (•½). Study psychology (• ½). Writing a book (• ½) and many other things. The list is therefore very much a work in progress, which can expand or shrink at any given time. Thankfully, I’m someone who likes to grab the bull by the horns. Where and when possible I chase my dreams as best as I can. Like moving to Ireland. This was a wish and a teenage dream. In it, I have the sea in front of the house and mountains in the backyard. I would also marry someone Irish, who has red cheeks from always being outside and we would live happily ever after. Sadly, marrying someone with red cheeks never happened, and where I live has neither beach nor mountain. Nevertheless Ireland has been a happy home for the last 13.5 years. MS may have tempered the speed of fulfilling the list somewhat, but there is still some life left in it. I am quite mindful though that it doesn’t turn into a check list that urgently needs to be ticked-off and wiped clean every day. The way I treat my bucket list is to forget about it. Continuously aiming for the goals can take away the beauty that is already around us, and in the people we share our life with. We cannot forget to live in-between the goals we have chosen to put down on paper/computer. You also cannot forget to “live in the now” (as mindfulness therapists call it) and make time for those around us. The present is now, it is all we have, it IS as important as what lies ahead. Spontaneity happens when you allow and figuratively step out of the way.   In hindsight, a week in Rome with my mum earlier this year tops everything else I have done or achieved so far. We owe it to ourselves to keep having dreams and to continue putting things on our lists. Life would be rather dull otherwise. Like Henry David Thoreau said, “Do not lose hold of your dreams or aspirations. For if you do, you may still exist but you have ceased to live.” It can reignite your dreams to put them down on paper and remember what lights your spark. Check out https://bucketlist.org/ for some inspiration.  If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 14 Apr 2016

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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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