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

  • 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

  • Photo for article: Daddy, Come Out and Play!

    Daddy, Come Out and Play!

    This week Fergal Hughes writes about watching his children grow up, making the most of quality time and the lessons he’s learned as a father. This is heartfelt, perfect reminder that for parents, often our children are the better teachers. I have two sons and I’m separated. I only have my sons every second weekend. These days, my youngest son has just just finished primary school while the eldest has just completed his 1st year of secondary school. They’re more concerned with what’s called ‘screens’ (i.e. video games and YouTube videos) than swimming lessons! But a few years ago, when they were both going through primary school, I used to get them involved in extra-curricular sporting activities like football or swimming. The importance of being active and all that. And as much as I could, I'd try and be active along with them. It was important for them (and for me!) to at least 'give it a go' when I got the chance. It was inspiring for them and it was motivating for me too. Sometimes, after a Saturday morning football lesson, there’d be time enough for a quick 10-minute kickabout between the kids and the parents. Just for the hell of it, I got involved too, albeit always as a goalie- less requirement to run after the ball! The thing is, my MS gives me a very noticeable limp in my right leg and I also get tired very quickly (my two worst symptoms). I was a useless goalie and I almost always let whatever team I was on down. Aside from these weekend organised activities, I felt it was important for me, as it would be for any parent, and important for my sons that we bonded over shared experiences. So, I’d try and get all three of us to spend time together outside, be it at the beach on a gorgeous day or down the park playing piggy-in-the-middle or hide-and-seek or whatever. Of course, this meant piggy-in-the-middle could be very unfair when the ball went off course and there was a dash for it between me and one of my sons. I always lost. (Damn you, MS. You’re showing me up in front of my kids!) Interestingly, in time I began to notice that one or both of my kids used to ‘let me win’. Seriously. I thought it was SO cute. It should have been almost patronising and it might have been if it were anyone else but it brings a tear to my eye, realising that my sons saw how the MS physically affected me and how they just wanted me to feel better regardless. Funny, if I didn’t have MS, I’d be the one playing with gloves on, so-to-speak, letting my kids beat me, be it in a game down the park or in a 5-metre race in a swimming pool. The fact that it was the other way around, even though it was against the natural order of things, shows me how mature and compassionate they are, especially for their age.  And believe me, I gave that game of piggy-in-the-middle my all!

    Author: Fergal Hughes - 28 Jun 2018

  • Photo for article: A Sense of Pride

    A Sense of Pride

    This week Emma Rogan writes about Pride. The MS community is a mix of humanity- straight, LGBTI, different ethnicities, cultures and experiences. For Emma, the power of the MS community, the value of being visible and the progress in patient empowerment is worth celebrating.   This article puts two important aspects of my life together and I wondered how to do it. What is pride about? Is it about identity? Is it about confidence? Then I stopped wondering. This story is about when I stopped pretending I was someone I wasn’t and began to be who I was meant to be. Twice. As uncomfortable as it was at the start, there could not be any other way.   I ‘came out’ as gay to my family in my teens. It was a surprise to some; it confirmed for others what they always thought (my affinity for Doris Day movies was NOT for the Cary Grant cameo and yes, I was infatuated with Steffi Graf) and other people I lost contact with. Little did I realise that my ‘coming out’ would help me later on in life when I was diagnosed with MS. I’d walked the fear-paved path before, disconnected from my family and friends. Some of the disconnection was all mine as I struggled to find the words for what I was going through. I took myself away to the city, looked for people like me, built connections with other souls and gradually came home in myself. But when I returned, the greatest surprise was the welcome, the embrace from my family and friends when I did reveal my glorious self.   When I was first diagnosed with MS, the questions rose again. Who do I tell? How will they react? What will they say? When do I tell them? How will I tell them? What do I say when they react to me? Where are the other {young}people with MS? All the questions I had coming out built a resilience I never appreciated until I had to tap into it, again. In the past, I’ve said that disclosing I have MS to people is like coming out. Yes, in that I’m making myself vulnerable and telling someone something about myself that is different to the typical human experience. And no because I’ve learned the hard way that difference is something humans notice and being noticed can be dangerous. Thankfully, it is here that the power of community and patient empowerment has made all the difference; despite the danger I wouldn’t have it any other way.   I couldn’t find other young people with MS to talk to when I was first diagnosed so I set up a Meetup group. Since 2010 we have been meeting monthly in the IFI Cafe in Dublin, every time creating a safe space for people newly diagnosed (6 weeks was the newest person) and the more long-time MSers can get together and talk. There is no obligation, the only expectation is that you be yourself and allow others the same respect.   This for me is what pride is about- celebrating my unique human experience while allowing others to do the same. As patient pride/patient empowerment progresses and the other stakeholders move over to allow the patient at the table, the situation for people with MS is improving. But we must remind ourselves of the person with MS who today is in an inadequate healthcare facility or to the person unable to access counselling or to the newly diagnosed person shuffled out of a clinic with just leaflets to hold onto. Visibility is important not just for ourselves but for the people struggling with life with MS, those who will be diagnosed with MS and for better public understanding of this traumatic condition. Being visible isn’t for everyone, we know it is dangerous, but for those who do choose to join the movement, there’s a whole lot of us waiting for you.   The Dublin MS Meetup Group has more than 200 people with MS as members, meets every month in an accessible location in Dublin city centre and welcomes newbies. Join up here: https://www.meetup.com/Dublin-Multiple-Sclerosis-Group/ Check out Emma’s blog https://republicofemma.wordpress.com/ and follow Emma on https://twitter.com/emmadragon

    Author: Emma Rogan - 25 Jun 2018

  • Photo for article: Father's Day

    Father's Day

    Sunday 17th is Father’s Day and this week Keith Byrne describes the joys of being a Dad. Read on for how he’s balancing life tasks so he and his family stay healthy and how being open to challenges helps him build resilience while living with MS. Stress can be the catalyst for the onset of many illnesses. Coping with a full-time job, a young baby and a chronic illness all at once can certainly be described as stressful. This is never easy. Particularly when they can all be so demanding at the same time. I'm learning to take a different perspective so the demands don’t take over. Being a father to a 17-month-old can often mean restless nights, followed by a long day in the office then home to spend some (brief but) quality time with my son before his bedtime. Only to do it all over again tomorrow. It sounds tough and I suppose at times it is. At least if you apply effort into your work you might get the occasional thanks. Not so with a baby. Bringing things into perspective, the morning and evening times when I get to hang out with Oliver and see him showing off what he's learned is beyond comparison. His latest feat comes when asked “What does the lion say?” and he answers with a big "ROAR!". I couldn't be prouder! I find routine can be the best way to keep stress levels to a minimum. Time is such a precious commodity that it needs to be used wisely. I have yet to master this skill but if you have any tips please do share in the comments section below. Regimented tasks in our house, such as the weekly shop or cleaning floors each night before bed, are of given almost critical importance. And then stress levels rise when routine is broken. Actually, it's helpful just to take a step back, realise that it's not the end of the world and take another view. Once he's happy and healthy, that's the priority. I need make sure his Daddy is happy and healthy too. MS can bring with it pain, fatigue, uncertainty and many other symptoms. Because of this I've started to challenge myself more. I'm almost putting myself in stressful situations so I can learn to cope with it better. Whereas before diagnosis I would have avoided them at all cost. I plan on running the Dublin Half-Marathon in September and now I've also signed up for the Full Dublin marathon in October. For me staying active and eating healthy are just as important as medication when it comes to tackling MS.  Keeping a determined and positive mindset will definitely give me a better chance of staying relapse free. It should also help me sustain a happy and healthy lifestyle. Although with MS this is never guaranteed. Those thankless and sleepless nights, were you just feel you can't do anything right for your child, can be testing. Luckily those nights have been few and far between. But they can have a knock-on effect and leave me exhausted throughout the days that follow. Still, those sleepless nights can lead into playful days. Those rosy red cheeks and teary eyes have led to big white teeth. And those cries of frustration at him not being able to say what he wants led to a voice that now says "Dad"; and that means more to me than thanks ever could. I wish every MS Dad a great Father’s Day and look forward to reading your comments. Keith has set up a charity page for the marathon for anyone who would like to support him as he raises funds for MS Ireland: https://give.everydayhero.com/ie/half-marathon-for-ms  Keith also writes a blog where he shares on his life: https://keifib.wordpress.com/

    Author: Keith Byrne - 14 Jun 2018

All MS and Me Blog Articles

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.

Latest News

More news

What's hot

Small_camera-photographer-yellow-photography

Enter our 2019 Calendar Competition!

Calling all budding photographers! Enter our competition to see YOUR photo in our new calendar!

Find out more

Events Calendar

» Our next Event

19 July 2018: Yoga classes to help improve health and wellbeing. Ongoing throughout 2018

View all events

eNEWS SIGNUP

If you'd like to receive e-news updates from The Society please enter your email address below. If you want to know more about how we manage personal data then please see our privacy policy.

My local MSI

Map of MS Ireland's service areas South Mid West West Midlands South East North East North West North Dublin City and Fingal South West Dublin and Kildare South East Dublin and Wicklow