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

  • Photo for article: Exercise and MS

    Exercise and MS

    As a follow on to my last blog about eating healthier, I decided I would make more of an effort to increase my fitness and mobility, which has taken a back seat for a long time! To start, let’s call a spade a spade... I am lazy... I have never been a fan of exercise, apart from swimming. So, when  I see others go for a run or cycle, my first thought isn’t “oh I wish I could do that”. I can’t say that MS has stopped me from doing sports I love, I was never that way inclined anyway. Exercise can be very difficult for people with MS, as an increase of exertion can result in a temporary flare up of symptoms, which in turn makes us feel a bit rubbish (“a bit rubbish” isn’t the term I usually use, but my mammy might read this).   In the past, it was thought that exercise was actually bad for people with MS, and it should be avoided. This theory isn’t supported nowadays, and in general exercise is encouraged. Of course, people should follow the advice of their doctors and neurology team, and listen to what their own body is telling them. I want to improve my health and fitness overall, so I made a decision to walk more and to try to increase my activity levels. I have symptoms in my legs a lot, my balance can be off. I can feel sore and achy first thing in the morning, or if I’ve been sitting at work all day. I was surprised to figure out that a walk sometimes helps to ease my legs. This was helped by the addition of Bob - the - dog to the household, who is very excited by a stroll at lunchtime or after work, and isn’t too bothered by a numb leg getting in his way. I am better off walking by myself (and Bob, of course) as my pace can vary greatly from day to day. It would be frustrating for both me and my friends if I could keep up with them one day, and was lagging behind the next.  I have to be sensible about it. Some days I am able to walk a lot further than others, so I have to recognise when to stop.  It used to annoy me when I got tired and couldn’t go as far as I wanted to, which put me off trying in the first place. I had to re-evaluate my expectations. I now know that pushing myself too far has a negative effect on my energy levels, but most days I can manage to have a decent walk before I get to that point. Being a lazy article doesn’t help, any sign of a twinge and I would retire to the sofa! It has taken a while to change that attitude.  I think the main thing I’ve learned is not to put too much pressure on myself- if I don’t manage to get out and about today, it’s not that big a deal, I can try again tomorrow. Thanks for reading Niamh

    Author: Niamh McCarron - 16 Apr 2015

  • Photo for article: Together We Are Better

    Together We Are Better

    I often hear people say that all MSers are different. I know where they are coming from. This chronic illness has so many, seemingly random symptoms. The brain is supposed to be conducting the orchestra but due to inexplicable glitches, certain instruments go out of tune from time to time- or stop playing altogether. It’s tempting to turn down the volume or stop the music completely. It’s true that all MSers are affected differently. Yet- we are all the same. We ALL have MS. Just like organisations like the IFA or the GAA- we have something massive in common, even though we are different. Together- we are better…. I know from experience that these words are true. Things are easier when you have buddies; comrades; a community. That way, you can be part of something. That way, you don’t feel so alone. I regret that I let myself wallow alone in my self-made MS pit for as long as I did. Now that I am part of the MS club I can get (and give!) the support I need. I can focus on doing positive things with people who get my chronic illness. Economic impacts are something that affect us all- unless you are lucky enough to have found a generous benefactor who will foot the bills. MS comes with a myriad of hidden costs. I constantly worry that I will not be able to make ends meet for my family. The most obvious for me was loss of income but the price tags on the cost of my vital medication and the loss of MSers from the workforce are astronomical. For the first time, MS Ireland wants to estimate such costs on a national basis. By participating in their survey- you will be helping MS Ireland articulate the substantial economic impact of MS, which could shape future health policy in Ireland. At this evening’s MS Louth Branch Support Group, I am going to strongly encourage everyone to wisely invest twenty minutes and complete the ‘Societal Costs of Multiple Sclerosis in Ireland’ survey. If we stand shoulder to shoulder and shout with one, clear voice, the government will hear us better. “We want improved, effective services! We want first-rate drugs faster! We want meaningful jobs! We want to make informed decisions on our health!” If we don’t articulate ourselves, we will either be ignored or given things we don’t want. Please complete the survey. The closing day is the 9th of April. It’s our chance to let the government know that “WE ARE HERE!!!"

    Author: Joan Jordan - 09 Apr 2015

  • Photo for article: Early MS History

    Early MS History

    The View From Here; Opinions from a Life with MS 'A brief history lesson from some of the first recorded cases of MS' History is at every meeting of lanes, of every dry-stacked stone wall and in every corner of Irish life. With the run-up to the centenary of The Easter Rising, history may be even more at the fore of our minds. Today, I’m going to offer a glimpse back into MS history to see the tails of some of our earliest forbearers (of MS that is). One was a saint, one a Bastard. The Saint First; the tale of a pretty young Dutch girl who fell while ice skating on a cold February day in 1395 and never fully recovered.   It was fortunate for young Lidwina that she had declared to her family her intention to remain a pious virgin three years earlier.  Had she not, the waxing and waning of symptoms for the next 39 years until her death would surely have been attributed to demonic possession; her “ability” to overcome them for periods would have been considered evidence of witchcraft. Though not made a saint until 1895 (patron saint of ice skaters, if you were wondering), her bones were treated as holy relics and even protected against protestant ransacking of such things in her native land.  When they were rediscovered and examined at the end of World War II, in fact, her remains were able to help researchers hypothesize (corroborating with several written text) that Lidwina most likely lived with multiple sclerosis. Because of the extensive (for the time) religious writings about Lidwina and of her condition we know too well, she has become accepted as the first “documented” case of MS. The Bastard You’ll often hear a senior Non-Com in the military bristle at being called “sir” with the retort, “Don’t call me ‘sir’. My parents were married…” This harkens back to the day when the illegitimate boys with titled male parents were sent off to be officers in the royal armed forces. Such was the case with Sir Augustus D’est, the illegitimate grandson of England’s King George III. Adhering to the Victorian fashion of diary keeping, we are able to follow the young Calvary officer through much of his life. In December of 1822, however, we begin to see entries which could have been written by many of us. Sir Augustus writes of his progression of symptoms from minor vision nuisances and heat intolerance to restless leg syndrome and hyper-sensitivity to touch. I was fascinated in reading such a detailed account of his symptoms that I felt an odd kinship with the young officer. I almost cheered when I read that he forewent the hot spa treatment offered to him at one point in his journey. I know that a hot tub will send me into bed for days… once I can be fished out! So, we’re not possessed, we’re not witches but I can sometimes feel as lost as Sir Augustus in finding answers (really, have a read of some of his diary linked above. They’re fascinating).  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 - 02 Apr 2015

  • Photo for article: Economic Impact of MS

    Economic Impact of MS

    Myriad of extra costs with MS... Ten years after diagnosis I admitted to myself that keeping up fulltime work was taking way too much of a toll on my health. Bye-bye pension, nice knowing you full pay-cheque, colleagues, stability, identity and financial security. It was a very difficult time, and I faced a personal crisis that most people only really do later in life on retirement, namely what is my purpose? What defines me? What will I say when someone asks you, “so, what do you do”? A few years later I returned to the workforce in a part-time contractual self-employed role in my former profession as a librarian-researcher and I’m loving it, but I fear for the future. I’ve no private pension, I don’t get paid sick-leave or holidays, and there is no certainty beyond the contract I have signed. I’m only as financially stable as my last invoice. At 42 I hadn’t expected to be still in this position! There are of myriad of extra costs with MS. Secondary Raynaud’s syndrome means the heating needs to be on more, and I’m home more than most. Poor co-ordination, ever-present fatigue and severe heat-intolerance meant I needed an automatic car with air-conditioning, costing slightly more to buy, insure and run. I have to buy cooling products for the summer, high-intensity fans, cool-gel packs to put behind my back for the car and work and this year coming I think I’m going to have to invest in a special cooling vest. I haven’t even got to the point of needing house or car adaptations, that may be in the future for me. I take a very specific set of supplements too. I know these are complementary medicine, but I think they are a very important part of my wellness and they cost €60 a month! I’m only touching on the most obvious of extra costs of living with MS for me. I’m sure that others will have many more. How does the economic impact of MS affect you? I was really glad to see MS Ireland's research survey on Societal Costs of MS in Ireland because it's quantifying exactly what the extra costs of living with Multiple Sclerosis are. Please take some time to add your experience.

    Author: Helen Farrell - 26 Mar 2015

  • Photo for article: A New Altered Life, Post Diagnosis

    A New Altered Life, Post Diagnosis

    Robert Burns, the famous Scottish poet, in 1786, penned the now famous lines “The best laid schemes o' mice an' men gang aft a-gley,” translated from ancient Scottish it loosely means that the best laid plans often go awry. And so it happens in life; we may not have an exact plan laid out for our lives and we may not know exactly where we want to go or how to get there but one thing for sure is that our plans do not include Multiple Sclerosis (MS). I was 31 years old and my life was gliding along at a nice pace; married to a wonderful woman with 2 great children, an overdraft and a mortgage. Then a curve ball landed in my lap. MS took up residence. It snuck in without notice or fanfare. It lodged itself inside my body in 1988 and has refused to leave. In the beginning it took short holidays but kept returning to torment me and now it takes shorter and infrequent holidays.  It is difficult to accurately describe the limitations imposed by MS. I know that I will never run a marathon now but I would probably never have run one anyway. There are plenty of things that I cannot do now that I would never have attempted.  The changes I had to make crept into my life slowly. One of the earlier ones being the need to occasionally use a cane to aid my stability while out and about. Call it vanity or pride but I wouldn’t use a cane in public. For years I carried a golf umbrella and used it as a cane when it was needed for balance but never as an umbrella even when raining! Coffee became a no-no as did ‘heavy’ work. I strove hard to keep a number of businesses going but I had to make decisions and reduce my workload. However, between 1999 and 2003 I achieved 2 law degrees from UCC while continuing my work as an auctioneer. By that time, I was finding myself more and more confined to the office. I was slowly turning into a desk-jockey and the strange thing about it was that I didn’t really mind. Fatigue was becoming a greater feature and other MS symptoms also conspired against me. The need for frequent loo breaks was an embarrassing necessity. Standing to greet people and shaking hands was a problem because of my compromised balance. My friends and colleagues were understanding and made allowances but some customers and clients were less accommodating. Would life have been different without MS?? Definitely!  Speed of movement and MS are irreconcilable; I remember being on holidays in Mojacar, Spain and decided to go for a ‘Banana Boat’ ride. I started to walk across the sand but by the time I decided it was too far I couldn’t go forward or backward and the net result was that the soles of both my feet were blistered and we had to rely on the kindness of another holiday maker to help me back to our hotel. Swimming was another pleasure lost to me. I was never good at gardening but I loved being outside in the fine weather doing garden stuff as opposed to just sitting around and watching others do the work. That became too much for me over the past few years and another pleasure was lost. We moved house recently and the low maintenance garden will get me back outdoors soon.  MS places limits on our lives. This is a fact of life that we must accept but we must not give up without a fight. Know and respect your limits and boundaries but don’t be afraid to push them. If you push too hard your body will let you know. Don’t allow yourself to be sucked down the slippery slope of despondency and inability. Respect MS but don’t give it total control over your life. MS changed my outlook on life... Over the years I have become more tolerant of other peoples perceived shortcomings because of my own. I have become less critical. I realise that not all illnesses are visible and invisible illnesses can be more disabling than visible ones! Most people make allowances for disabilities they can see but invisible illnesses are more difficult to cater for. Do you have a different outlook on life? Declan Further reading A short story of my diagnosis Visit able2access.wordpress.com blogs about accessibility for the mobility impaired   

    Author: Declan Groeger - 19 Mar 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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