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

  • Photo for article: Meet Our New MS & Me Blog Team – Part 1

    Meet Our New MS & Me Blog Team – Part 1

    Introducing our team of bloggers for 2018  As promised last week when we said goodbye to some of our long-time MS & Me bloggers, we now begin by introducing you to our team for 2018. While it may feel like January has been ‘blogging about blogging’, we feel it is important to note the changes, growth and evolution which MS & Me is constantly going through.   We hope that you’ll welcome our new contributors as well as welcome back some familiar voices to our community. Declan Groeger  Back with us but in the new role as Contributing Editor is Declan Groeger. Declan was part of the original MS & Team in 2014. The Cork man has lived with MS for about 30 years and is an avid traveller. He says of himself, “I am older, but not old. Am insanely positive and an eternal optimist.” His personal blog, Accessibility Matters, began in 2013 and offers musings not only about travel with MS, but also his finds for accessible restaurants. We’re happy to have Declan join our editorial team to help shape MS & Me into whatever it may become. Joan Jordan  Also returning is Joan Jordan. The Louth native returned to Ireland in 2004 after living abroad for several years. She’s married with two teenagers (and their cat, Tiger), recently returned to part-time employment as the Content Coordinator for EUPATI, the European Patients Academy, and is very excited about that step.  Joan is an active member of the Louth Branch of MS Ireland, runs the Humans Multiple Sclerosis community and has a new book aimed at newly diagnosed people with MS due out later this year. Fergal Hughes  Father of two boys and currently separated, Fergal Hughes likes films, books and classical music. When it comes to exercise, however, he says it best himself, “I prefer an exercise bike. Unfortunately, I don’t exercise that much… in fact, I don’t exercise. *Note to self: this needs to change*.” Fergal gets a kick out of life and of writing about his experiences. We look forward to reading more of his observations around life, single-parenting, and perhaps getting back on that exercise bike… Christina McDonald  28- year old Christina McDonald has recently decided to return to education and become certified as a primary school teacher.  Diagnosed in late 2016, Christina enters her second year of living with MS by joining the MS & Me blog team. Beyond children and education (she’s also an Honours Degree in Cultural Studies), her passions include raising awareness of multiple sclerosis. She looks forward to sharing her story as she makes her way through her degree and on to teaching. Keith Byrne  Married and a new father, you may have read Keith Byrne’s story in this week’s Independent. Diagnosed just after his first Christmas engaged to his now wife, Keith has changed his life habits (exercise, diet, and, well… being a new father changes things quite a bit, too!). Keith enjoys writing – not just about MS – so we look forward to seeing what a full-time employed, newlywed, busy new father has to share. Robert Joyce  Robert Joyce has been living with a diagnosis of multiple sclerosis for over 25 years. For the past 4 of those with the addition of chronic pain. He writes the blog A 30-Minute Life about his experiences with both. In his two and a half decades living with this disease, he’s come up with some interesting strategies, a sense of gratitude and looks forward to sharing them with our community. We too look forward to sage advice and thoughtful reflection from this long-time MS veteran. Next week we’ll share profiles of our remaining MS & Me blog team. We hope you read, comment, and share your thoughts as we bring you new perspectives and new voices in the coming months.

    Author: MS & Me Editorial Team - 18 Jan 2018

  • Photo for article:  A Year of Hellos and Goodbyes for MS & Me

    A Year of Hellos and Goodbyes for MS & Me

    With the turn of the New Year MS & Me is expanding and diversifying. In this post, we also say ‘goodbye’ to a number of friends Late in 2013, the MS & Me blog launched with an idea, a hope and a cadre of nine bloggers with what we jokingly referred to as “varying levels of inexperience”. The idea was to create a space where real conversations about MS would be led by people with the disease. The ambition for MS Ireland was that we, the bloggers, would strike a chord and stir conversation in our national and international community. We know these past four years have been a great success for the MS & Me community and we’re excited to announce the expansion of our team in the coming posts. First, however, it wouldn’t be right to let the departure of a few of our original bloggers pass unmentioned. The volunteer endeavor to make this a safe and interesting place, where people can read of the experiences of others and share their own, has been a monumental commitment of time, energy and emotion. Some of our original team have taken the opportunity of the expansion of our blogging team to recommit to other aspects of their lives. Goodbye and Good Luck First, we’re ‘kicking Emma upstairs’, as it were. As well as blogging with us, she’s been a part of the editorial team of MS & Me since before we published our first post. We have restructured our editorial side for 2018 and, with a vastly expanded roster of bloggers, Emma will have more time to focus on editing and communication aspects of the blogs. We may hear from her every now and again, but, for the most part, Emma will be helping our new bloggers express their voices in the coming months.  Trevis will also be stepping back a bit from actively blogging. He’ll be concentrating on a new series of group blogs we’ve planned for the coming year, so you’ll still see some of his writings, but in a slightly different way. Both Aoife and Lucina will, sadly, be leaving our team as well. Aoife has always given us a youthful vibe and positive outlook in her writing. From personal tales of difficulties to representing us all in Leinster House, we have enjoyed and been inspired by Aoife. She is now currently working for MS Ireland and is also very involved with Shift.MS. We can’t wait to see what how she continues to use her voice for all people living with multiple sclerosis. Lucina has been busy with more than the MS & Me blog in the past four years. She’s been producing films, raising her twins, writing her personal musings in both her blog Poppy Cottage Diaries as well as the occasional piece in the national papers. She’s been an inspiration to us all. We’ll miss her wit, her smile and her pragmatism.  We wish Aoife and Lucina continued success and good health as we part this company, but we also know that they’ll never be far from our hearts in this little community of people with MS in Ireland. In our coming posts we’ll introduce you to our new bloggers and catch you up on what’s been going on with our original team members who are sticking around for another year. 2018 is having a blustery start on the weather front but for the MS & Me blog the forecast is it’s going to be a *HOT* New Year!

    Author: Trevis Gleason - 11 Jan 2018

  • Photo for article: How About The Best Christmas Ever!

    How About The Best Christmas Ever!

    This week from the MS & Me blog archive Emma Rogan shares her thoughts on minding your energy levels, minding your mind and making it the Best Christmas, EVER!  Here we are again folks. The dark evenings are lit up with the brilliant shiny lights hung across our streets, houses, trees and anything else that needs a bit of a lift. With all that’s going on, how’s your inner light? Maybe this year has been tough and you’re worried about what the Christmas time will bring? Life with MS is different for all of us, whether we have the condition, our loved one is living with it, or it is our friend who has it. Whatever way you’ve come to know about MS, one piece of information we all share- living with it can bring unwelcome surprises to our lives at any time of the year but especially times like this.   Rushing around meeting friends, catching up with family, making sure the shopping’s done, presents are wrapped and everyone is catered for can cause us all to dim a little. So, how about you take time to take time to relax, to be kind to yourself and be prepared to welcome whatever comes in the next few days. Here are a few suggestions for you to get your inner light shining again: Look After Yourself Take it easy on yourself- Christmas is about different things to different people. If you’re not feeling great, that’s all right. All the fuss isn’t for everyone. Time with Friends Make time to be with people you love to be around. Not only does having a good laugh and shaking off your troubles make you feelgood, you’re reinforcing your connections with folks by celebrating life. It’ll boost your health too!  Ask for Help With so much going on, make sure you ask for help. Sometimes people need the opportunity to help out, ask them. So many things are much better when done with others and that includes the washing up! Out and About Do three things to relax every day: walk, listen to some of your favourite music, dive into that book you’ve been wanting to read, meditate (try out DigiPill, an excellent app to make the most of taking time out) enjoy a walk in the local park/field/woods, fly a kite if you have one.  Mind Your Body  Sleep and rest are fundamental to you enjoying the waking hours. Plan your rest times and stick to them. You’ll be energized to move on to the next fun event- Monopoly, card games, Pictionary anyone?? Exercise: Heart pumping, moving your limbs, deep breath…and out in the fresh-air. Brisk morning walks in the early light will give you a great start to the new day. Jogging along the beach will be my way of blowing off the cobwebs and excess eating! Eating and Drinking Eat mindfully; that is, watch what you’re eating, go for the delicious healthy food and keep the treats to as little as temptation allows! Merriness  Your happiness is all the more meaningful when based on real events. You don’t have to be sober all Christmas but if you are you will feel better. Be real about how much you’re drinking and take it easy. Gratitude Reminding ourselves of the good things in life is important; unless we think about what aspects of life to be thankful for, the difficult aspects can overwhelm us. For me, it helps to think about loved ones, those very special moments that enhanced my life experiences. By bringing them to mind, I’m tapping into those great memories, recreating the positive emotions tied to that memory. Sometimes we can’t find nice memories or anything to be thankful about. If you need help finding these things that you have, talk to a close friend about what’s on your mind. Make contact with someone in the Samaritans, they’d love to hear what you have to say if you think you can’t talk to anyone else call 116 123 This is the time of year when we get to be with friends and family, enjoy being ourselves, being at peace with folk and have a gentle time before the promising adventures of the New Year. Wishing you and yours a wonderful Christmas Season. Here’s to minding your energy levels, minding your mind and making it the Best Christmas, EVER!  For updates and to take part in Emma’s ongoing adventures, please visit republicofemma.wordpress.com and join in the conversation on Twitter  Blog originally published in 2013

    Author: Emma Rogan - 20 Dec 2017

  • Photo for article: Fatigue and MS

    Fatigue and MS

    This week from the MS & Me archive Helen Farrell takes a look at the affects of MS-fatigue on friendships, employment and daily life. 'Nobody realises that some people expend tremendous energy merely to be normal' Albert Camus  I know the French philosopher, writer and journalist Albert Camus didn’t mean to describe the physical effect that MS has on us when he said the above; he was probably referring to a state of being, or a philosophical approach to life. But the quote describes very accurately the extra energy we need to expend when we have MS, before we even begin to appear ‘normal’ to others. Many times this effort fails, and our shortcomings are painfully obvious to normal people. Other days we are able to hide behind a veneer of normality but privately hit rock-bottom later on, away from the outside world. At times I coast between the two extremes; ultimately my level of fatigue makes most of the decisions in my life these days, and it is for me, without a doubt, the very worst symptom of MS. All spontaneity leaves your life when you live with fatigue. You know you have to do a grocery shop today. Immediately you will need to factor in a short lie-down to recover afterwards. This eats in to your afternoon time. You won’t be able to run through the work you’d planned. Dinner will have to be shortened and simplified. You have processed food and beans. It costs more and is less nutritious. You are ill-prepared for work tomorrow. Housework is not done, you’ve got cranky, you feel bad and you have let people down.   Fatigue has a habit of altering the geography of my mental-maps; a journey to the end of the road seems exhausting one day, filled with potential pain and tiredness. Then on another day I start on the same journey and can go further than my destination without even noticing, to my delight. One day to go into town seems way beyond me but on another day I have a walk and don’t feel like ‘death warmed-up’ after it. On really bad days, my fatigue can so great that I feel like begging those in charge of any public-place for permission to lie down on the hard floor for 10 minutes, and sleep in front of all the passers-by. And I would too! On days like that, even getting dressed feels like a big effort.  When I’m in work, on my 1 or 2 day-a-week schedule, some lunchtimes I lie on the floor of my old office with a blanket covering me, and set my alarm on my mobile. It can make difference between spending the afternoon in a horrible slush of cognitive-dysfunction and pain, or an afternoon of productivity and less pain. It’s also given one or two people a huge fright when they have walked in on my nap and thought that someone has collapsed! I’ve learned to put a sign saying ‘Helen Resting’ on the door these days.  I thought long and hard before embarking on this blog-journey and I wanted it to help others feel less alone, to perhaps raise issues for them that they could think about, to their benefit, or to help another person see alternative way of tackling a problem. I decided I had to be honest, but it is a very difficult thing to share with you that fatigue has limited the size of my family. With one son, I can manage (just), but it hurts so much not to have given him a sibling. My fatigue is so great that I could not have coped with two children. Only those who have a problem with fatigue will understand this properly. Normal people have said things like ‘oh, you’ll manage, you’ll be grand’ or ‘oh you don’t want to get to 45 and regret it’. You don’t have any kind of crystal-ball with MS but it’s not called progressive for nothing, and I know I will always regret that I wasn’t able to take a chance on a second child. I barely got through being a Mum to a new-born, age 36, and now, at 41, I feel that ship has sailed. Every time my son asks me ‘Mammy, will you play with me’? or when I see the closeness between siblings, I feel a knife turn inside me, for him. I have to console myself that I have done my best by him, that he has a great network of cousins close-by, and that maybe a second child would have cost me my mobility. I hate the effect fatigue has on my wonderful little son. I know that sometimes he resents me having a rest, although we snuggle down together on the sofa and he gets to watch a DVD, but he’d much prefer a Mammy that did more with him. Our time together is good though, apart from my naps. Perhaps I expect too much from myself? Sometimes I think ‘well, I did make a pizza with him, play hockey down the hall, a game of snakes and ladders, and do the homework with him. One DVD isn’t going to harm him for life after ALL that quality time’.  Fatigue eventually forced me to resign from my good job. I doggedly hung on to full-time work after my MS diagnosis, and watched my social-life, personal time, everything shrink and shrink until all I could do was work, eat and sleep and even then it got too much for me.  I got to 10 years post-diagnosis and I resigned, not seeing a solution to accommodating my need for a 2-day week. Ironically, now I am working in my same role but on a 1/2-day basis a week. I take some research work home to complete it. This suits me well because I still get a chance for naps and rests, and the two working-days are not consecutive. It is so fantastic to be back in the workforce and engage my mind in work, librarianship and research.  Fatigue steals in and changes friendships and relationships; they need shared time, fun, chats, and meetings to flourish properly. Some people can never adjust to shorter meetings, no spontaneity, adjusted time-frames, and different venues. No more long boozy dinners out or 3-hour walks in the countryside. When I’m invited to a big family event I am always so thrilled, so happy to see people, but worry about how long the ‘fallout’ will effect me afterwards. A wedding would necessitate my husband taking a day off afterwards to help me out at home, me sleeping a lot the next day, and me feeling below par for up to a week afterwards. People sometimes hear ‘I need to rest’ as an excuse, and gradually drop me over time. I adore the friends who have stuck with me. The amazing ones who have quietly said at get-togethers ‘You can use my bedroom for a nap later if you want’, or who have said kindly ‘Would you be up to that’?, ‘Tell me if I’m walking too fast’? or ‘How are you this week’ and really meant it. Those friends are so, so precious.  I’m probably one of the few people in Ireland who looks at the weather with dread as it approaches 18C+, because I know my fatigue is going to get worse the higher that the temperature climbs. This year I got myself a car with air-conditioning (woo hoo!), and I am hopeful this may have a positive difference on coping through the summer heat. Two things stood out for me when I was on the annual family-day for people with MS this year; the first was that I was deeply envious of the man who brought a lightweight portable-bed with him, they other was that I was the first to leave before the allotted time was up, because I had run out of energy and needed to have a nap in the car on the way home while my husband drove.  I try to keep exercising when I can, for if you can brave it through the initial increase in fatigue and pain, I’ve discovered after 3 weeks you get a reduction in your fatigue. In the winter months, I seem to act like a large magnet to bad chest infections, and they can take a month to clear. Then, I am back to the beginning in trying to get my fitness up. It’s very annoying. I was really hoping that Symmetrel or Modafinil would work to alleviate the fatigue, but they did not. They gave me insomnia or dizziness, but no decrease in the lumpen form I become without naps. This is unusual though and shouldn’t put you off trying the meds. It’s just a few of us have a bad, or no reaction to them. Hopefully they will work for you. I drink a large amount of coffee and diet coke, and it does have its uses! I take supplements like green tea extract and am hoping to get some N-acetyl-L-Carnitine and Alpha Lipoic Acid to see will they help. They are nutritional products that have been tested at high doses, and there’s an article on PubMed that proved they can work. Maybe they will provide a breakthrough for me.  Normal people say ‘oh I’m exhausted this week’ but it’s not the same as this MS fatigue; it’s like the precursor to influenza, or the fatigue you feel in early pregnancy; a tiredness that you cannot brazen through; it can make you put the coffee-pot in the fridge, the milk in the oven, and forget what day it is. It peels your skin off and makes you feel raw, it turns up the volume of tinny noises and they go through your brain in jabs of pain. I lose patience with myself and others. I forget why it is I’ve just gone upstairs, mix up people’s names; forget major events and even what I’d arranged to do that day. I feel stupid. In December I made a special arrangement to visit a friend to bring over Christmas presents, and then turned up on her doorstep without them. Sometimes people also say ‘sure I did that last week’ but I am privately thinking, yes, but not a few times every day! Happily, after a nap, my brain usually fires more smoothly, the pain lessens and everything is a bit less of an effort. I deeply resent my naps for the time they steal from my life, the things I could be doing if I wasn’t having to rest, but on one level I love them too when I feel a bit recharged after a lie-down.  It all sounds very depressing but that’s one thing I’m definitely not. I am so grateful (incredulous really) about how well I’m doing mobility-wise into my 16th+ year with MS. I know what this MS can do, when it feels like it. Despite crushing, smashing fatigue, I am still lucky enough to manage walks some days; occasionally do weights, cook a nice dinner, get a bit of ironing done, or walk my son to school. Each day like this is like a gift.  I expend a huge amount of energy just trying to appear normal (thanks Camus). Not for appearance’s sake, but because feeling somewhat part of the human race, somewhat useful to others, somewhat normal, is an essential component of my mental health. The days I manage to achieve something, I feel such joy. Even it means that later I will crash and have to take an hours’ nap in the afternoon, the sense of achievement is worth every bit of the exhaustion. I can awake with a clearer, functioning mind, and so much less physical pain AND a sense of achievement.   Before MS I had a driven personality that wanted to do all things excellently. MS has made me lower these standards, and sometimes any effort is the best you’re going to get out of me! But the real-me seethes with frustration at this situation. I still want to achieve excellence, exactness, thoroughness and exhaustiveness in things that I write, study, or do. I hate having to see less than 100% efforts in what I create. None of this ‘sure it’s grand’ for me. But MS-fatigue has other plans and sometimes plans don’t even start because of it, much less achieve excellence! Can you ever be ok with this if you share my personality-type?  So, DAMN you fatigue! I will fight you at every chance I get. I will still try to achieve things despite your constant presence. Sometimes I get away with a few days without naps and it feels great. Then very, very occasionally, maybe once every six months I will get a ‘magic day’ where I feel normal. Just for 24 hours. The feeling of euphoria that comes with this is so great that I have no doubt that if a cure were to be found, I would be off running up mountains and jumping out of airplanes for skydives at any chance I got. For those 24 hours I do more than one big thing in the day and don’t get exhausted. I feel invincible. I cram so much into that day that I inevitably crash for the following few days but by God it’s worth it. I can dine out in my head on the ‘magic day’ for weeks afterwards. Here’s too many random ‘magic days’ for you and me ahead. In the meantime, be good to yourself, allow yourself rest and let yourself know that you are taking good care of your health. And if you do try them I hope the anti-fatigue meds work well for you.  Helen Blog originally published in 2014

    Author: Helen Farrell - 14 Dec 2017

  • Photo for article: A Stress Free Christmas

    A Stress Free Christmas

    This week from the MS & Me blog archive Joan Jordan shares how she is *learning* to have a stress free Christmas. This year, I will celebrate my eighth Christmas with my MS diagnosis. I choose the verb celebrate very carefully as it is not the first one that springs to mind when I consider how this unwelcome guest affects the way I mark the festive period. In Christmases past I have stubbornly battled to ignore the fact that I have a chronic illness. I grabbed every party invitation December threw at me just to prove that I still had it. I pulled out all the stops and did my level best to swing from the chandeliers. This ended in exhaustion and tears of frustration at my altered self. On one occasion, I paid for it dearly with a January relapse. I have also tried another approach whereby I assumed the role of the Grinch at Christmas and cut myself off from the people I love, the very people who genuinely wanted to spend time with me- despite my MS. The people who accepted my limitations and were willing to find a middle ground where we could still enjoy ourselves. The people who didn’t constantly harp on about how much craic the old Joan was. This led to a lonely time where some of these lovely people eventually stopped making the effort.  As time passes, I take good advice from wise companions who have travelled the MS path for longer than I have. I am learning to strike a balance, the right balance for me which strangely enough is also the right balance for my friends and family! I now think carefully before I accept an invitation. If it is feasible, I accept it but make it VERY clear that sometimes- because of my illness, I need to cancel plans at the last minute. If the invitation is not realistic, I explain why and suggest a compromise.  Things have changed. The thought of the traditional meander down thronged shopping streets on Christmas Eve now seems like the opening scene of an Indiana Jones movie BUT the prospect of a hot-chocolate in our favourite coffee-shop a few streets away (where we know we will get a table) ticks all the boxes. The frantic dash around department stores to snap up last-minute gifts has been superseded by on-line shopping where the parcels are delivered right to my door. A trip to a jam-packed restaurant has been upgraded to a take-away in front of the fire where we don’t have to worry about making swift exits due to my unpredictable bouts of fatigue. This blog is titled ‘Having a Stress Free Christmas’. I’m afraid that I don’t have all the answers but I know that as the years pass I am learning how to help make Christmas less stressful and hopefully, more enjoyable for me and those around me. What do you find works for you? I would love to hear your suggestions. And most of all- I wish you a Merry Christmas and a Happy 2018. Blog originally published December 2016

    Author: Joan Jordan - 07 Dec 2017

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

Trek

Treks 2018

Get active for MS and sign up to trek with us in 2018. Challenge yourself to trek to Everest Base Camp or join us in Jordan or Italy. The choice is yours!

Find out more

Events Calendar

» Our next Event

19 January 2018: Physiotherapist led exercise programme for people with MS.

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