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

  • 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

  • Photo for article: He Said/She Said: Bad MS Days

    He Said/She Said: Bad MS Days

    This week we get to ‘listen in’ on a conversation between Grace Kavanagh and Keith Byrne. They’re talking about the good days and the bad days, the ups and downs of life with MS and life in general.  What does a bad day feel like to you? Grace: Everyone’s MS is different and so is everyone’s version of ‘bad’ days. I have been diagnosed with MS for 13 years now. Over that time my version of ‘bad’ days has changed as my MS has progressed. To be honest at this stage I don’t even rate days as good or bad, I just go with it and do what I can. I think that there are different kinds of ‘bad’ days. There are days where my body just won’t cooperate and I barely have the energy to blink. For me there is not a huge difference between physically good and bad days as I always struggle with fatigue and mobility so I try not to focus too much on my physicality. The worst for me are days when I am emotionally exhausted or just cannot motivate myself to engage with the world around me. Keith: Everyday there are a couple of hours where I just have to zone out. I’m unapproachable, I’m cranky and I can barely string a sentence together. My brain feels like it needs to shut down and reload. This is something I’ve come to accept rather than fight against. I don’t know if accepting fatigue is the right approach to take, however, it holds me in good stead if I manage to have an impromptu nap every other evening. I see my brain as a battery and time-out helps it re-energise albeit briefly. What works for you on bad days? Grace: I’ve had a lot of therapy and mindfulness practice to try deal with the negative spiral that can go on in your head when things are not going too well. I have a number of “distraction techniques” (fancy way of saying I bury my head in the sand for a bit) that take my mind off the negatives. For example I spend time with my cat, he always makes me laugh. I enjoy mindful colouring and play games on my phone. I can vastly improve a bad day by accepting my limitations and adjusting my plans for the day accordingly. That may well mean watching TV in bed but giving myself permission to do so means I’m not feeling guilty all day on top of everything else. Now that is an easy option for me since I don’t have a job to go to or children to look after but Keith you have both of these - how do you cope when downing tools isn’t an option? Keith: I have to admit it’s rare that I can take time out to look after myself as I know I should when having a ‘bad’ day. Having a full-time job and a toddler at home doesn’t really allow for it. I’ve tried therapy and mindfulness too. I did find them beneficial but when fatigue really kicked in, I lost interest. Although I know it’s not possible for many people with MS, keeping myself as active as possible is the best way I find to tackle the bad days. The high I get from running really stands to me. It helps me think straight and de-stress. I’m at a stage in my life where stress is unavoidable but the endorphins triggered by running at least make it manageable. Easier said than done particularly when fatigue and multiple other symptoms have you wiped, however, I would recommend anything that gets the brain pumping as a way to tackle the bad days.  Asking for help Grace: We are both lucky enough to have understanding partners who pick up the slack for us when we are struggling. Do you find it difficult to ask for help? Keith: In some ways I’m a very stereotypical man and don’t like asking for directions. When we’re driving somewhere I’m unfamiliar with I will always rely on my wife to have Google Maps open and direct the way without asking her directly. It’s the same with asking for help. Sometimes I need a steer in the right direction and she’s the one who provides it. Yet I would never say directly “I need help” even when it’s blatantly obvious! It is important that someone close to you has an understanding of how you are affected by MS especially as we are all affected by it in so many different ways.  Advice/Suggestions: Grace: I find a gratitude diary can be helpful when I’m in a dark mood. Writing down 3 things I am grateful for reminds me that there are good things in my life. Talking to someone who understands and has MS has been a big help to me; we can empathise with each other and maybe even laugh when brain fog hits and we can’t remember what we were talking about. Listen to upbeat music or watch funny videos on the internet. I read a blog somewhere that suggested having an emergency ‘bad’ day kit. You could put in a copy of your favourite book, chocolate or some other treat, perhaps your favourite movie. If at all possible get out of bed and get dressed. Try to achieve one small thing in the day, it might make you feel better. What would you suggest as a survival kit for bad days Keith? Keith: Some really good points Grace. I also find writing very therapeutic and the best possible remedy for brain fog. The thesaurus is my friend when I know what I want to say but just can’t think of the word – this happens easily one hundred times a day. Also, being kind to yourself is very important especially when we’re having a tough time of it. I’d definitely have a playlist of my favourite songs for my ‘bad’ day kit and maybe a YouTube playlist of historical sporting moments. Actually, on that note, I think I’ll watch Ireland beat Italy in the USA ’94 World Cup. I wonder if Paul McGrath still has Roberto Baggio in his pocket :) 

    Author: Grace Kavanagh and Keith Byrne - 11 Apr 2019

  • Photo for article: Tomorrow I will….

    Tomorrow I will….

    This week Rosie Farrell shares with us how she has learnt the art of listening to her body. Ah, those three little words. The uncompleted tasks and treasures of today hang on those words. Like a carrot on a stick, they lure me into the future by promising me what the now can't deliver.  Tomorrow I will…  They may just be three little words but to me they mean the world because within them they hold hope, hope that tomorrow the pain will be better, that I'll manage that walk, hope that I'll finish that painting I've been too sore to work on. Hope is my fuel and it drives me through the tough days. There are never any guarantees with MS. I always have several back-up plans because I can often wake from a fitful sleep to find my pain has soared or my mobility has plummeted. I think that's the hardest thing about this disease, trying to grasp its ever-changing mood and adapt when the goalposts change daily, hourly even. To future-proof myself and how erratic my MS can be, you will always find a wheelchair in my car boot, or if you see me without a walking stick, there is always one folded up in my handbag, because if there's one thing I don't want this disease to take any more of, it’s my freedom. There's a real stigma around using a wheelchair though, and it doesn't do us any favours. I don't know how many times I've heard the word wheelchair used in an almost-end-of-the-road context where MS in concerned. And when we use it that way I don’t think we realise how much that ostracises those of us using wheelchairs, as if our MS is this separate disease - the worst-case scenario. Because of this I ended up in one of the loneliest places of my life because I had no idea that someone with relapsing-remitting MS may need a wheelchair and that using one is often just the sign of an unlucky relapse - a badly placed spinal lesion in my case - and not always a sign of progression. A negative attitude towards the wheelchair is a society-wide issue really. Every time I find myself unable to enter a building, it feels like society screaming at me to go home, to not bother. But using a wheelchair is NOT the worst thing that MS can do to you and if accepting its help is the difference between leaving the house or not, if it means you can board your flight and start your holiday without extreme fatigue, is it not worth it? If I’ve learned one thing it’s that my wheelchair only ever enables me, it’s the badly designed country we live in and the stares of people who aren’t used to seeing enough wheelchairs in their daily lives for that exact reason that disables me. The chronic pain I’ve developed with this disease is what I struggle most with and I’m so tired of popping pills to keep the beast at bay. I plan my tomorrow always mindful of that. Even now I’m writing this from the couch in fits and bursts after a dreadful night’s sleep, willing my painkillers to kick in. But this is where plan D comes in, this is where I snuggle up on the sofa with my husband and our little dog Trixie and our day bursts to the brim with love. It can be easy to spiral when you have to cancel plans and it’s only natural to be disappointed. However, I try to find a few things to be grateful for in each day no matter how tough they are. In doing so it bathes the day in a more positive glow The art of seizing tomorrow lies in listening to your body. This is a skill and in the early days I found a symptom diary helped me learn my triggers. I also find studying my calendar for the week ahead helps me keep things in check. I often open it on a Monday and start crossing out things I know will tip me over - and the people who matter always understand.  So if there’s one piece of advice I can offer anyone with MS it’s that - learn the art of listening to your body. For me, my wheelchair has become my safety net because no matter how bad I feel, I always know that I can say “Tomorrow I will”, and that’s a beautiful thing.  

    Author: Rosie Farrell - 05 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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