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

  • Photo for article: Fathers Day

    Fathers Day

    On Fathers Day Niall McGahon shares his thoughts on life with MS and being a Dad to Seán (2 years old) and newborn Robyn I am a father, not to just one little being in the shape of the handsome 2-year-old Seán anymore, but to another child in our beautiful little girl Robyn! How did that happen…. well you know what I mean.  Today is Father’s Day and the latest addition to our family has given me another jolt of perspective - I am not the centre of the universe anymore. The laughter and smiles of a 2-year-old and 2-month-old should be able to pull anyone out of the darkest moods they may be in. However, becoming a father these last 2 years, has made me more acutely aware of my MS. In my current state, I may not be the father that I thought I would be, and I may need to think about my approach to fatherhood slightly differently.  Growing up I was very much used to having a kick about with my dad or during the summer heading ‘out the back’ for a few holes. I can’t kick a ball the way I used to, let alone play golf the way I want to. I’m going to have to take a totally different road than the one I had drawn out for myself.  You know what, that’s ok because it’s not for me, it for my kids. I don’t need to play football or golf to be the best Dad …. They might not like sport anyways!! My focus is going to be building fantastic relationships with my children. As they grow up, hopefully they will understand why I can’t run with them around the park or put them on my shoulders. For the immediate future I just want to enjoy seeing them blossom and watching their little characters develop. In doing this, I hope that they will still have a normal childhood. This is where I may become even more dependent on my wife than I already am. She may need to do some of the heavy lifting that I may not be able to do. It doesn’t make me any less of a father or emasculates me, I just can’t do it and we’re ok with that. The target is to give myself the best possible chance of doing the running and playing with my kids. Between exercise, diet and meditation I can do it. If my wife is anything to do with it, I will do it.   I also must be aware that our house is gradually turning into an amazing obstacle course - Crypton Factor level, with Lego, books, toys, hurls, the odd nappy strewn everywhere. Not ideal for a person with mobility and balance issues! But I love a good challenge. It’s great to be in the middle of and oddly enough for me it takes my mind off the real challenges I face.  When I’m with my children, MS doesn’t matter, my mind is clear, and my pains subside. Don’t get me wrong the MS is very much there and visible when I’m trying to get up from a good tickling session, but it fades away with the sound of chuckling and shouts of ‘stop dadi’. I need to concentrate on the things that I can do with my kids and enjoy them to the ninth degree. I always wanted to be the best or win the race. I now realise that if all I can give my kids is my time then that’s a lot more important than winning any race.  Hopefully it makes me No.1 Dad, that’s more than good enough for me. I have MS but it does not have me. I have children, they will always have me. 

    Author: Niall McGahon - 16 Jun 2019

  • Photo for article: World MS Day

    World MS Day

    This week Robert Joyce shares his thoughts on World MS Day and invisible symptoms Every year we take one day, May 30, to tell the world about Multiple Sclerosis. This post is on ‘our’ blog where we share our experiences of MS and its impact on our lives. I am the audience we write for and I know when I write ‘pins & needles’, your heads will nod. You have experienced this and many other symptoms, many of which are invisible. This World MS Day we are going to share with the wider world what it is like to have invisible symptoms, and the impact they have on our lives. In the last year there have been two projects showing how these (invisible symptoms) feel. In Ireland we had the MSunderstood Cafe starting as a pop up experience in Dublin and then it toured the country in a bus. When someone without this disease walked in and tried to move an impossible heavy chair or couldn’t focus on the blurry menu, they felt for a moment, this illness. The second project was the film ‘Hidden’ produced by Shift.MS. It followed a young woman on her journey through the day and you could see how difficult it is experiencing something you cannot share. On this day our aim is to move these stories outside of our group to the wider community to share them with people who have no experience of MS. Experiences like the crushing fatigue that makes every movement leaden and difficult, to lost sensation in our fingers making the world feel like some coarse sandpaper, limbs refusing to move like they once did, pain manifesting in so many ways in so many places or L’Hermittes that causes an electric shock to run from your neck to your bottom just because you nodded your head! The world will not know what it is like to live with MS unless we, the people in the MS community, tell them. On this day the spotlight will shine on us all over the world. If you are from Connemara, the USA or India, the message will be the same. We have invisible symptoms we cannot escape from and we cannot fix. MS is incurable. By sharing this message we will be pushing to get more understanding of our daily lives and to get more research to find solutions to our medical needs. On the World MS Day website you will find events taking place all around Ireland and the world. We encourage you to take part in any way possible. It can be online through Twitter, Facebook or Instagram, or maybe at a coffee morning hosted by your local branch. Take part so the wider community, your local community, will understand a little bit of what it is like to live with Multiple Sclerosis.

    Author: Robert Joyce - 30 May 2019

  • Photo for article: I Have Fallen

    I Have Fallen

    This week Mary Devereux talks about falling and how she is dealing with the impact of Primary Progressive MS on her life and the lives of her family members.  I have  fallen… I could fall up a stairs, down a stairs; going up a footpath and going down a footpath and often I have tripped on...nothing. My foot sticks to the ground, my ankle or knee will simply stop working and I fall. Sometimes I will jump awake from a sleep with the sensation of falling. Falls are part and parcel for many people with Multiple Sclerosis. Falls are something we endure but also work hard to prevent. Muscle weakness, spasms, coordination problems, foot drop and numbness are all common MS symptoms that increase our risk of falling. More often than not, falls are unpreventable. I used to have SO many more suit jackets but no trousers to match because they were the casualty of my many falls. The first reaction I have when I fall is one of embarrassment; the second is to get up as quick as I can and walk as fast as I can, not looking right nor left and hoping no one has seen me. These are my first reactions despite any pain I may be in. Some of my falls are my own fault, like when I am over-tired but still insist on carrying out a task instead of listening to my body. Then foot-drop hits and all of a sudden I am having a close encounter with the floor. Or if I am carrying too many things at once instead of slowing down and carrying out the task in a safer and more thoughtful manner (that’s a whole different conversation for another day!). When your tendency to fall is no longer funny to people, you see the worry on their faces. That worry often leads to attempts to protect you. It begins with “don’t climb that ladder” or “don’t go up to the attic”, then “don’t stand on the chair”... all things I would have done before diagnosis without batting an eyelid.  Once I fell down the stairs, couldn't stop myself and heard the crunching of bones as I tumbled. The things I have been running away from I now have no choice but to allow them to be part of my life. They minimise the risk of falling and therefore the injuries I might get from falling. Things like a cane, a rollator, the bed rail, the non-slip mat on the bedroom floor, the second banister rail, the shower chair... the list goes on. I learned early on with this disease I had to help myself in order to survive; if my wellbeing and survival comes by way of special equipment, so be it.  My latest addition to falling has been in the middle of the night.  Sometimes I wake up from pain, try to sit at the side of the bed fully expecting my feet to be my anchor and all of a sudden my feet are sliding out in front of me. I know I’m going to hit the ground and there isn’t a thing I can do to stop it. I scream, wake the house and have to accept the help to get up. Then I spend all the time apologizing for it.  What do I fear most about falling?  The look of fear on my loved ones’ faces. The slow ebbing away of my confidence and independence.  This progressive disease is a thief that comes any time of day or night and never leaves empty handed. The MS thief always takes a little bit of me with it. 

    Author: Mary Devereux - 09 May 2019

  • Photo for article: Kiss Goodbye To MS 2019

    Kiss Goodbye To MS 2019

    Ciara O’Meara will be spending the month of May in anticipation of Kiss Goodbye To MS campaign and reliving the good times at a gig in the RDS. Bring on the big hair Mr Bon Jovi!  June 15th 2010 is the day I got my official diagnosis of Multiple Sclerosis.  I made a promise to myself that very day that forever more, June 15th would not be a dark day or a day for despair or self pity.  It would be a day of celebration. A celebration of the year passed, the achievements recognised and the tough days acknowledged. June 15th would be a celebration of Ciara, not of a diagnosis or of an illness. June 15th so far has consisted of spa days, breaks away, nights out or a box of Lindt chocolates and Netflix.  And June 15th 2019 will be no different. Only that Mr. Jon Bon Jovi will be marking the day with me! Celebration & Contemplation While I make June 15th a celebration for myself, it’s also a day for contemplation, an opportunity to reflect on the world of MS in the year that’s passed. From new research being carried out to new medications approved or the development of advocacy and support groups, there has usually been more opportunities for understanding, acceptance and awareness of this chronic illness. When I stand in the RDS Arena on June 15th, rocking out with Jon Bon Jovi, of the 18,500 people around me, there will be up to 37 people living with multiple sclerosis. 25 of them will be women.  37 people with the same illness albeit different journeys and experiences.  37 people with hopes, fears, dreams and disappointments.  37 people from the MS Community who will require and benefit from support workers, physiotherapy, symptom management courses, newly diagnosed sessions, respite services and the MS information line.  37 people who wait for the licensing of new disease modifying therapies that will slow their disease progression and improve their quality of life and who wait patiently for a cure on the back of ongoing research and clinical trials.  Kiss Goodbye to MS The Kiss Goodbye to MS Campaign is just what these 37 people and the 8,963 others living with MS in Ireland need to ensure these resources, supports and developments continue. Ireland’s annual opportunity to help ‘Kiss Goodbye to MS’ will run throughout the month of May with local and national events and activities. The campaign, calls on individuals, workplaces and groups to get creative to fund research and provide services for the 9,000+ people in Ireland with MS.   So what are you waiting for? Check out the Kiss Goodbye to MS campaign and join the fight to make MS history. Step outside your comfort zone and dare yourself to do something fun, exciting, glamorous, weird or whatever, to raise money for vital research and services for people living with MS in your community and the 37 others in the RDS reliving their youth and rocking out to ‘Living on a Prayer’! 

    Author: Ciara O’Meara - 02 May 2019

  • Photo for article: MS and Anger

    MS and Anger

    We don’t always have the words to explain how we’re feeling. But unless we do, how can we ever really process these emotions? This week, Christina McDonald and Mary Devereux consider anger. Grieving can make you so angry. It comes in different forms; it can frighten you because you lose control like you never would have in a previous life. Anger is one of the stages of grief that we find ourselves re-visiting. It can be a difficult stage of grief that can creep in at any time. We can find ourselves grieving and angry over our lives pre-MS. You can find yourself alone at night, crying over feelings of worthlessness, plagued with self-doubt and questioning what your purpose in life is now. Sometimes you can even find yourself grieving the old you who didn’t get angry very often. We feel that anger can take control of our thoughts about life, ourselves and others around us. MS can take a lot away from you, so you become angry over the lack of freedom and spontaneity in your life, when every-little-thing must be planned.  “I don’t even have the satisfaction to even walk out in an argument or drive off to calm down. My legs don’t work so fast anymore; MS cognitive issues took my car licence and my career so I am always coming back with my tail between my legs (so to speak).”- Mary  You think about what you’re putting your loved ones through because they are also suffering, watching you from a distance. Sometimes you’re so angry with them you’re watching them thinking their life is going on without you. Deep down you know they have their own demons, that they’re trying to come to terms with the possibility of losing Mum or Dad or their partner. Losing the one they knew before the disease took hold. All you want is to be that person again. You can become angry when looking at friends and people your age- thinking they are doing GREAT things with their lives and you feel left behind. We know, we know... life is not a race and we shouldn’t compare ourselves to others. But for us it’s only natural when you’re living with a chronic illness. You can even find yourself getting angry with the people who “know that one other person with MS”. They tell you stories about how an “all green diet can cure MS”. Yes! CURE MS! This can make you so angry because if someone has met one person with MS... they know it all. Despite me knowing no two people with MS are the same.  “Now, when people tell me about their miracle cure, the anger inside me turns to laughter and I just think to myself, if only I ate more lettuce, broccoli and peas, I’d be cured…. Not only that but I’d be carrying this miracle cure and making millions. Why didn’t I think of this before?!” -Christina  

    Author: Christina McDonald and Mary Devereux - 18 Apr 2019

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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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