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

  • Photo for article: Am I Progressing?

    Am I Progressing?

    This week Fergal Hughes wonders about what the future holds for him in terms of his MS ... and realises that he is more concerned with 'here and now' I was diagnosed in January 1996. The diagnosing doctor told me that he believed my type of MS to be remitting/relapsing (RRMS) and what that would more than likely entail for me. I remember in the days  following my diagnosis I bought  every book on the topic of MS that I could find in town. I then went home and promptly threw them all under the bed! Looking back, I think I was just trying to make sure that I at least physically ‘possessed’ as much knowledge as I could (I guess I was trying to get a sense of ownership over this unexpected addition to my life). But then I simultaneously created my own little ‘Pandora’s Box’ in my room, never to be opened for fear of what it might contain. Coincidentally, my MS went into remission at that exact time, allowing me to develop a healthy denial about it. [Aside: If I remember correctly, I think I never actually read those books. Ever. In 1998, two years after the start of my remission, MS returned with one hell of a relapse, going so far as to give me a permanent limp in my right leg. Now, in 2018, I can say that I believe I’ve learned that attitude can be at least just as important as knowledge. In my opinion, there really is a lot to be said for that old chestnut, Positive Mental Attitude. Over 20 years since my diagnosis, I’ve developed two new conditions, both neuralgias and both facial/cranial extreme nerve pains. One is called Trigeminal Neuralgia (TN) and the other is Cluster Headaches (CH). Nobody told me beforehand that I was going to develop these. There was no medical prognosis, best guesses, psychics, witch doctors, NOTHING . I just suddenly acquired the conditions and I had to quickly learn how to deal with them. And I’m still learning how to deal with them. Again looking back, a doctor or neurosurgeon or whoever, might have hinted TN and CH might be on the cards but personally, I reckon that that would have been a potential disaster. I say this considering the proven effect that fear and stress can have on a newly diagnosed person with MS.  At the end of the day, there’s only so much one can do about the future. Right now the most important thing for me is dealing with the here and now.

    Author: Fergal Hughes - 16 Aug 2018

  • Photo for article: But You Look So Good

    But You Look So Good

    ‘But you look so good’…. MS & Me blogger Niall McGahon shares his thoughts and reaction on hearing this compliment. “But you look so good….” For some, this expression can be one of the most frustrating things to hear when you have MS.  For me, it is simply someone paying me a compliment and my immediate reply is “Thanks a million…”  Personally, the most frustrating aspect of having MS - is having this progressive illness. No two days are the same nor do they have any predictability. This is where I have tried to take back control of my life and put a bit of manners on MS! Now this was by no means an instantaneous migration and did not happen overnight. It was and still is difficult to make such major lifestyle changes and I am continuously learning each and every day. Many times, of course it does get in the way, or rather my right leg gets in the way of my left leg. Suddenly the footpath and I are about to become very close friends! But like all things you learn to live with and give yourself the best possible chance of limiting the relapses through exercise, major dietary change, meditation and focusing on what I can do and not on what I may or may not be able to do in the future. I follow the OMS program for all of this. The great sports phycologist, Dr Bob Rotella has a simple concept used for golf of “staying in the present”. These golfers play their next shot until they run out of holes and then add up their score. I have taken this from my golf and tried to apply it to my illness, simply take each day as it comes and deal with that day. The rest of the days are, for the most part outside of my control.  Since being diagnosed with MS in 2014 and having many experiences since, I have become acutely aware of how well I am in the grand scheme of human health. I have been in hospital for various treatments and have seen people who have much harder crosses to bear than me. So as a result, I am trying to make myself more aware of when someone is paying me a compliment. I have no idea what that person is going through, yet they have taken the time to think about me and what I am going through by paying me a compliment. The correct thing to do is simply say thank you. If you can add to peoples’ knowledge of MS along the way through conversation, then brilliant. The greater the understanding of what a person with MS goes through daily, the better. You may be in pain, you may be heavily fatigued, and you may not be in a very good emotional place. What I have learnt over the last 4 years is that the person saying that you look good could be in the very same place but for a totally different reason, so saying thank you is sometimes best for all. 

    Author: Niall McGahon - 26 Jul 2018

  • Photo for article: Me, Men and MS

    Me, Men and MS

    ‘Don’t let MS stop you from finding your happily ever after’… This week Ciara O Meara reflects on dating and disclosing her MS when she finally found the one!   Dating is a pure and utter minefield! Your preparation for the field is diligent and precise. You approach the field with care and caution, as you have no idea where potential disasters lie. The field itself is exciting; it’s unpredictable and it’s nerve wrecking. And your exit from the field can be a calamity or pure serendipity.  MS just drops a few unexpected mines into the field of mayhem! MS never impacted on my dating life and it certainly didn’t do anything to lessen the amount of frogs that reared their heads along the way! When I was diagnosed I was in a relationship, but that ship was already sinking long before MS was mentioned. It was sinking at such a rapid rate that I never told him of my diagnosis- what was the point? It wasn’t going to make any difference to our relationship and I didn’t want anyone hanging around out of guilt or fear. Plus, I was excited at the thought of single Ciara returning to the minefield of dating! I didn’t have the Tinder experience when I was single. It was late bars, nightclubs or a friend of a friend. I didn’t have the ‘liathróidí’ to approach anyone without an alcoholic beverage in hand. Give me some Pinto Grigio and I had balls of steel. There were once off kisses, numbers swapped, a regretful one-night stand, a date, maybe two, even three but MS was never mentioned and it never entered my mind. I had no visible symptoms of my MS and there was no indication that anything was wrong. I was young, free and single and playing the field and MS had no reason to be involved.  Like I said, MS never impacted on my dating life, not until I fell in love that is. Ladies night out in a dodgy nightclub at home at Christmas- it was only meant to be one of those random drunken kisses. Numbers were exchanged, dates arranged and by month four we were ‘Facebook Official’ and I was falling and falling hard. I had told Dave I loved him long before MS was mentioned. Maybe it was fear, maybe worry, pity or embarrassment that stopped me every time from telling him. I thought if I told him that he would feel morally obliged to stay in the situation rather than wanting to be in a relationship. There were only so many excuses I could make for the perfectly circular bruises on my tummy and thighs from the Rebif. I wanted this relationship to develop and to do that I had to be honest about the uncertainty and unpredictability that this disease brings with it.  When I told him he stared blankly for a few minutes, my heart rate increasing by the second. He looked at me, held my hand and said ‘Ciara, I fell in love with you and now that I know you have MS, I will love you even more’.  I had made MS out to be bigger than what we had when in fact our journey together with MS would make us stronger. Six years on and a house together is testament to that. He’s there on the bad days, he’s there on the good days and he’s there to support me in everything I do. Everyone’s someone is waiting for them. Don’t ever let MS stop you from finding your happily ever after. Brace the minefield with open arms and kiss all the frogs that hop in your way- you never know which one is the right one!

    Author: Ciara O Meara - 19 Jul 2018

  • Photo for article: Good Days and Bad Days

    Good Days and Bad Days

    This week Robert Joyce discusses the good days and the bad days. Chronic illness invades every part of our lives and it can be so easy to fall into a trap of grieving for what used to be.  Snowflake. I never thought that I would class myself as part of this new category. It is a term that is used to describe the new generation, signifying that everyone is different. Unique. Special. Beautiful. Multiple Sclerosis has so many variations of how it affects the people that have it; MS can definitely be called a snowflake disease.  In the last four years, my health has changed. My Multiple Sclerosis raised its head, announcing its return by adding extra weight to my right leg and placing gloves on my hands that contain thousands of pins and needles. It woke up because of a minor car accident that shook this beast from its slumber. Accompanied by a headache that since then has never abated.  Chronic illness can and does, invade every part of your life. Work suffers, testing your relations with loved ones and your mental state can transform from happy to maudlin in an instant. Your mind brings up memories of days when you could walk for hours, or become immersed in learning something new. Now, these are not possible. Living with longing for the past only leads to despair. I have travelled this journey and understand how easy it is to fall into this cauldron of lost abilities. My toe has been scalded many times as I started to slide into this boiling broth. Now I know how this feels and have found a way of lifting myself away from this bubbling pot. I’ve placed my damaged body back on a path with the sun warming my back by focusing on my abilities, on the friendships made while walking this road. Focusing on the opportunities that I have, the abilities that I learned, and newfound friendships, has created vital, renewing times for me. Lost mobility has put me in front of my laptop and now I write. Seeing that the creativity that I need to feel fulfilled can be met by using these keys, I now share my stories to an audience that spans the world. Singapore, Peru, USA and even Cork are all places that my words have been read. My eyes once again sparkle with excitement as I wonder what new post I shall write.  I share my story with the world and I know it is listening. In this uncertain future that I have as a result of my medical condition, I know that those dark, cauldron days will return. However, those days are a stark contrast to the days filled with happiness and gratitude for the new abilities that I have learned. I am secure in my belief that "the dark days make the bright days brighter".  Discover more from Robert Joyce on https://a30minutelife.com/ 

    Author: Robert Joyce - 12 Jul 2018

  • Photo for article:  MS and Coeliac Disease

    MS and Coeliac Disease

    This week Helen Farrell talks delicious, nutritious food and current food trends. Read on for her take on MS, gluten and the adjustments she (and her family) have to make so she stays healthy and well.  “Gluten! Such a poison” said the man at the café till. “How”? In what way” I asked, curious to know his reasoning. “You know, it’s really bad for you, causes so many problems in the body” he said. “Yeah”, I said vaguely, glancing at my gluten-free chocolate muffin loaded with sugar and oil. He looked like he worked out, Instagrammed and used sunbeds. I don’t.   It made me think a bit about the whole gluten-free (GF) trend. Seems like there are lots of people following the GF diet without truly knowing why; such a lot of hassle when you don’t medically need to. If you ask people their reasons for going GF, some say they feel better without gluten, some MSers think their MS will be alleviated, but the bottom line for many is because they think it’s bad or they’ll lose weight by going GF. As a person with Coeliac disease I can assure you that a GF diet can be very unhealthy if you only live on GF chocolate, crisps and pizza. A normal diet can include plenty of gluten and still be very healthy.    It was a shock when my husband mentioned that dealing with my Coeliac disease was more hassle than MS. He wasn’t being unkind. In terms of impact on things, he was more aware of Coeliac disease. When we want to stay somewhere, join with family for a meal, for shopping, to even prepare our food and avoid cross-contamination in the kitchen (a crumb will cause immune-damage to a true Coeliac), it’s more present for him. But then I realised that it’s not just him that feels that. Most people make more of an allowance for my Coeliac disease than my MS, which is mostly invisible.  MS is horribly, constantly present to me, but like an iceberg, the bulk of it unseen by most (but maybe I’m glad it is). MS feels like a relentless Terminator robot, coming for me without cease, trying to annihilate me. Even when I try to escape, it melts down and comes at me afresh. Coeliac disease is merely an irritation. In fact, it seems like the perfect disease; it’s easily fixed – just avoid gluten.  Now if MS were the same, I’d be a happy woman. There is no diet that is proven to alter the course of MS, at this time. Some people favour the Swank diet, Paleo, Vegan, or “Best Bet” but with no definitive proof of any specific diet helping people with MS, I’m going to keep enjoying my food as it is. Food is such a pleasure! If we follow general dietary principles for good health, it will help us live well with MS.  Perhaps my Nana was right when she said “a little bit of what you like, does you good” but in my case, not gluten.  Coeliac Society of Ireland: signs and symptoms Diet and MS, Pavan Bhargava MD, National Multiple Sclerosis Society (US)

    Author: Helen Farrell - 05 Jul 2018

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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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