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

  • 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

  • Photo for article: Mother’s Day

    Mother’s Day

    This week Teresa McShane shares her mixed emotions about being a mum with MS and how she really feels about Mother’s Day 2019.  I never really imagined being a Mother. As a girl growing up, I can’t remember ever having had that thought in my mind.  It wasn’t on my radar.   It wasn’t until I was diagnosed with MS in 1994 that I had to ask the question, ‘What about kids?’ Thankfully, my fears were allayed when I was told there was no reason why I couldn’t or shouldn’t have children. So, fast forward 25 years and here I am with two wonderful boys, 15 and 13 and Mother’s Day 2019 is just around the corner. Shelves with gift suggestions are neatly styled and stocked with goodies for ‘that special day’. Grand displays of floral-designed cards suggest I am a ‘Wonderful Mum’, ‘A Mum in a Million’ or, could I actually be ‘THE World’s Best Mum EVER’?  Well, on the one side, I’m not really ‘a card person’. And I am hugely cynical about the massive marketing and emotional blackmail involved in all these ‘significant’ dates in the calendar. But once a year, it is good for families to take stock of all the things that their Mums do.  And Mums do do a lot. Having said that, I don’t think Mums keep a record, a tally of their daily chores because that’s what we signed up to. That was the deal.  Occasionally I acknowledge the fact that having MS has made my job as a mum more challenging.  Mums with MS still have to do everything that other Mum’s without MS do.  We still have to do shopping, washing, cooking, and homework, tend to wounds, allay fears and wipe away tears.  Be up to speed on training schedules, matches and play dates.  Keep a house.  Not to mention know where the other football sock or gum shield or left shoe is! It’s exhausting on top of exhaustion. Thinking about it now, no wonder I have brain fog! And as a Mum with MS I can’t help but judge myself for my failings.  I get frustrated at the fact that my kids sometimes miss out on things because I can’t do them or take them so there can be a huge reliance on partners, friends and family to fill in the gaps.  I am lucky to have that support around me.  My kids have grown up with these limitations but I hope they know that as their Mum I have always tried to do my best for them.   So, on that note, I will accept the flowery card for the afternoons I tried to play ball in the garden with my son and fell over in the flowerbeds. I will accept the breakfast in bed for the nights I tended to my sick child when the fatigue was like a corn mill bearing down on top of me. And I will gladly sit back and read the Sunday paper for the mornings I stared up the staircase with a laundry basket in my hand feeling like I was about to attempt Everest. But I also acknowledge the greatest gift of all for me on Sunday 31st March is that I am blessed to be a Mum.  

    Author: Teresa McShane - 28 Mar 2019

  • Photo for article: The MS Grieving Process: Denial and Isolation

    The MS Grieving Process: Denial and Isolation

    This week Willeke van Eeckhoutte delves into the universal experience of grieving after being diagnosed with multiple sclerosis. From the ever-popular denial to the stories we tell ourselves and to being present in your daily life, read on to discover how she found her way forward….   Nothing is as numbing to the soul as being diagnosed with an incurable illness like MS. When that illness is also progressive and affects your brain, spinal cord and optic nerves, you can safely call it a double whammy...and a bit! In 2002 I moved to Ireland, the country of my dreams. At work, strong friendships were formed from the get-go and family members visited regularly. I was also studying for a degree in Psychology and when I had time to spare, I travelled around Ireland during weekends and holidays. Life was hectic and good. Fast-forward to 2005. Five months after experiencing my first MS symptoms, I stepped into A&E with excruciating facial pain and fatigue. These symptoms invariably marred my days- there was no number a pain severity scale. My diagnosis followed soon after... it still feels as if it happened yesterday. I remember what I wore, what I said, what I forgot to ask... as well as staring in my neurologist’s eyes looking for reassurance. I also remember standing in the hallway outside the MS clinic, texting everyone, saying “I am OK! It’s MS but I am OK!”  Denial had arrived. “The illness is mine, but the tragedy is theirs.” Third Star, 2010 Denial set in almost instantly. The visceral impact I thought would happen during the MS clinic, didn’t. When my neurologist said I would have to change my lifestyle, I thought, “What an odd thing to say to someone who just changed her lifestyle when I moved to Ireland.”  “No can do!” I said afterwards to the friend who went to the hospital with me—and who I conveniently forgot to take into the consultation room with me. She later dragged me off to a fancy restaurant because in her own words, “I was so in denial!”  Not facing up to the truth as a coping mechanism prevented me from going off the rails that day, so much so I was talking about the ‘D-thing’ in quite a matter-of-fact way. Family and friends were asking if I was OK as the lack of tears puzzled them. I asked them in return if they were OK because they seemed to make so much more of the diagnosis than I was.  When I eventually went to bed that night, my thoughts were fragmented and skewed. I was happier knowing what was causing the maddening facial pain and relentless fatigue rather than being sad about the difficult journey ahead of me. I didn’t see the need to quit my job nor the urgency to throw my life around again. This was a stance I eventually had to review 4.5 years post-diagnosis. This was diagnosis-denial 1-on-1 For about five weeks, I said “I’m fine!” Non-acceptance would intervene when new symptoms arrived and trigeminal neuralgia went up a notch. It stopped me from thinking about all the implications of such a harsh diagnosis.  Before denial dissipated, I still had a litany of questions that required answers I couldn’t find.  I could be forgiven for not being even remotely aware that my body was in a slow process of relinquishing power and control?  Did those glimmering lesions on my brain show up one day fully formed?  Why, after just 2.5 years, did MS have to attack the life I had dreamt of?  Please don’t tell me family and friends will walk out of my life because I’m “just not the same anymore”? Have I just lost the best part about myself? All the above went unanswered because the time and effort spent on finding the right answers by being negative were more energy-sapping than being positive was.  Interferon side effects helped drip-feed reality into my consciousness. Its numbing effect lost its potency, but I finally understood that being in denial is the opposite of having hope. Hope was where I was headed and hope is where I live to this day.  Check out Willeke’s blog Ireland, MS and Me  

    Author: Willeke van Eeckhoutte - 21 Mar 2019

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