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

  • Photo for article: My MS Passion:Knowledge is Power

    My MS Passion:Knowledge is Power

    Blogger Trevis Gleason shares the passionate ‘meal’ he’s made from the information he’s learnt about living with MS. When our group of MS & Me bloggers all met in the same room for the first time last December, we talked about a lot of things… A lot! Many of those things thankfully, had nothing to do with multiple sclerosis at all. You see we’re normal, healthy people who have lives, loves, interests and passions just like everyone else. Healthy people with MS. This idea of passions really struck, so we decided to open a monthly series of blogs dealing with the subject. Not just passions in everyday life – as these are very passionate people – but how our passions have been affected by MS and how our life with multiple sclerosis is changed by those passions. I’m a head-before-heart guy, myself. I dived right into the information side of the disease before I could get a handle on the living with MS part. It doesn’t work for everyone (and many – former wife included – might say that it didn’t work all that well for me) but whether first, last or during I believe fully that information, thus knowledge of MS is power. I dug and dug – online, in medical libraries, at doctors’ offices, friends-of-friends – for information about MS. Information is one thing but what I really sought without knowing it was knowledge. The difference between information and knowledge is, to the chef in me, like the difference between a trolley full of groceries and a fully cooked meal. One is ingredients, the other is put through its paces in order to be of some proper use. But use to whom? That’s where the term “Knowledge is Power” takes a bit of a change for me. Knowledge is, indeed, power but power only for one.  The information that I gained and turned into useful knowledge for myself only served me and those nearest to me. That is one of the reasons I began writing the Life with MS blog over 10 years ago. To share the knowledge I’d gained. Then I came to truly understand; information is fuel, knowledge is power, but only when the power is shared does it become ‘energy’. MS Ireland saw this three years ago as the final touches were put on the launch of MS & Me. My fellow bloggers understood it as they lined out to bare their souls to you on a weekly basis, so that our broader community might benefit from the technical information they’d turned into personal knowledge. The Japanese word for teacher is ‘Sensei’ which literally translates to “person born before another”, but generally is accepted as ‘one who has gone before’.  We all learn from those who have gone down the many labyrinth paths of multiple sclerosis. We gain our own knowledge along the way.  If we choose to share that knowledge – that Power – with others on the journey the power becomes energy to be passed on to the next and to the next. Knowledge, milled from the information I’ve mined over the years has helped me to live my best possible life with multiple sclerosis. My passion is passing that knowledge along so that its energy might empower others the way my fellow bloggers empower me.  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 - 30 Jun 2016

  • Photo for article: Is My MS Progressing?

    Is My MS Progressing?

    I hate seeing documentaries or movies about tornadoes; they absolutely terrify me. There’s a recurring nightmare I have of being caught in a barren landscape at dusk, howling tornadoes circling the scene. Terror takes over with the thought of what is to come. I don’t have to delve very deep to know it is my fear of MS. MS progression to put my finger on it, lurking in the shadows of my mind, surfacing every now and then at night. It is always at night that our fears naturally become magnified but I also have many happy dreams where I am a young, physically strong 25-year-old again, totally MS-free for that short time while dreaming. When I wake up I feel quite cheated to find I’m 43, with MS! Our bodies never forget what was normal was, pre-MS, all those years ago. Our new “normal” states never feel quite right, and the dissonance of symptoms causes a sense of disquiet within us.  This discord between our bodies and mind increases, the less control you have over your MS. When I was younger I kept imagining I’d slipped into progressive MS, because symptoms did not go away between relapses, and kept adding up over time. In the 18 years I’ve had MS I’ve been told I have Relapsing-Remitting MS (RRMS), Benign MS (do neurologists even believe in this category anymore?) and worsening RRMS. I dreaded hearing that it might have become progressive because for me that meant a loss of any traces of control I had over how my MS behaved, and I still dread hearing it. I know some people with MS progress very slowly and it’s not necessarily a rapid decline for all, but still it’s a club I don’t want to join. With the newer medications that we are all lucky enough to have access to these days, there is the chance that we will delay our possible move to progression.  When I was first diagnosed time moved by very slowly. I was really scared and watched my every symptom with fear for signs that this was my MS starting to progress. An MS-friend had told me that it takes 10 years to adjust and I didn’t quite believe her, but I think she was correct in hindsight. I went through bad patches, bad years, bad months, good patches, good months, but when you can’t control something it’s difficult to put it out of your mind. Over time I suppose I got sick of analysing the significance of every symptom that appeared and I settled into a kind of reluctant truce with my MS. If I kept up the kind of intense scrutiny that I had at first I would have completely burnt out and driven all my friends away too.  Weirdly, although tornadoes are extremely rare in Ireland, I came quite close to a funnel cloud, a type of proto-tornado, many years ago. I was working on an excavation down the country as an archaeologist in my pre-MS years, and during that August the peculiar kind of still, heavy weather gave way to great storm clouds. To our shock a grey finger poked down a few miles away, and elongated to reach lower, but didn’t quite touch the ground. Maybe that is what I have moved on to; progression hasn’t made landfall yet, so I’ll put the panic about the future on hold. 

    Author: Helen Farrell - 23 Jun 2016

  • Photo for article: Disclosing My MS

    Disclosing My MS

    This week Aoife shares her decision to disclose her MS journey to family, friends and the wider community. In times like these, sharing seems to be the 'in' thing. With the popularity of social media it is hard to escape sharing (and often over sharing). Sometimes it's a picture of someone's perfectly presented breakfast, a photo to support a cause and sometimes it's a funny cat video! Whatever the share, whatever the reason, people are connecting and interacting with each other. We exist in a time where sharing has become a very easy thing to do. So you would think that disclosing an illness, sharing that information might seem easy. If only it was as simple as pressing a few buttons and hitting post.  I am generally quite a private person, I don't document my life on social media but I do share the odd picture, more often I check in when I am in an interesting place, but that's kind of the extent of it. On the other side of this, I am a blogger - I blog about my own life, my own experiences, and my own illness. In my blogs I rarely filter myself, which is quite odd when I am quite fussy about what I post elsewhere. One side of my social media life is in complete contrast with the other. So why do I share my MS journey? Quite simply, I want to help other people. I feel that human connection is an incredibly powerful force. When I was diagnosed I didn't feel I had that. I felt quite alone with my feelings and at the time I think I could have used something like the MS and Me blog space to feel I wasn't alone. In those very early days I didn't know anyone who had MS and it would be quite some time before I met someone similar in age to me who had it. I felt a huge need to fix this. I live by the saying 'Always leave things a little better than you find them' - leave things a little easier for the next person who comes behind you. Use your journey to lessen the load of the next traveller. Reading a story similar to your own can be very empowering and I wanted to be able to help people in that way. I was THRILLED when the opportunity came up to share my story and to blog with my fellow MS and Me bloggers. I feel that we create a space where we share the delicate details of our lives and MS journeys, so that others can feel connected and become part of a community.  At the time of my diagnosis I was in college and experiencing symptoms that seemed crazy to me and anyone who knew me. These symptoms were affecting my performance in college. So when I ended up missing time and possibly needing extensions - I had to disclose my condition to my lecturers. I didn't need the extensions in the end, but I did need my ducks in a row, just in case. It also explained my late mornings and extended lunches on occasion. Disclosure to family and friends happened organically. I am close to my family and I think I had semi-prepared them for the diagnosis before it happened. So they were informed and involved every step of the way from symptoms to diagnosis. They were and continue to be incredibly supportive. I can't imagine what it would be like to live with my illness without including my family. Some people may not need it but I need the support of my family, they are my first call when I am having an 'MS' day and need a little extra help.  My friends had seen the affect MS had been having on me for months. They shared my journey up to my diagnosis and they continue to be a great support to me when I need them. Other than that we live our lives as normal, sharing, liking and commenting on each other's lives through social media - just like all the younger people who don't have someone with MS in their circle.  As most people tend to associate MS with people who were much older than me I was a little hesitant to disclose my illness very publicly at first. That feeling quickly passed and talking, reading, sharing issues can sometimes normalise them. You can become desensitised to things and I think this can be used positively. Being open about having MS in my early adult life was a way for me to combat stigma around sharing that diagnosis. The visibility of young people with MS isn't exactly high and I wanted to challenge that by getting more young people talking, to build a network and a young community. A community where our concerns matter. A community which can strive to make change, to make it easier for younger people who are yet to embark on the journey we are on. Disclosing my illness is no longer something that I can opt in or out of, it's right there in black and white if someone were to google my name. However, in my case I don't see any problems with disclosing my MS regardless of how public or private it may be. Life goes on regardless of what you do. You could choose to disclose or not to disclose your illness as you will still need to keep moving forward, because that's the only choice there really is. Deciding whether or not to disclose your illness can change from situation to situation and there is no 'one fits all' answer. My take on it, is that there is no need to move forward in isolation. Disclosing, sharing and joining together with others in the MS community has been hugely beneficial to me in so many ways. 

    Author: Aoife Kirwan - 16 Jun 2016

  • 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

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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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