MS Ireland
Informing, Supporting and Caring for the MS Community
22
Feb
Date/Time: 22 February 2019 - 12:30 to 13:30
Event Type: Living with MS Programme
Organiser: North East Region: Aoife Lambe
Region: North East
Venue:
The Crea Center,
Drumbaragh,
Kells,
Co. Meath
Brief Description Of Event:
Yoga Class for people with MS commences on 11th January for 6 weeks. Cost 25e.
Contact Details:
Aoife Lambe 086 4613369
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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
Internet services and supports for family carers Do you have 10 minutes to answer a few questions about internet services and supports for family carers? We know that a lot of family carers rely on the web for information, supports and socialising when unable to leave the house due to their caring responsibilities. The partners in National Carers Week would like to know a little bit more about how family carers use the internet supports available, and what supports aren't available but should be. The survey should take about 10 minutes and is completely anonymous. If you have any questions, email Zoe in Care Alliance Ireland (the organisation who coordintates the week) on zoe@carealliance.ie. Click here to take the survey: https://www.surveymonkey.com/r/NCW2019
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 :)
Living with a Long Term Health Condition Self-care group programme that teach practical health-related skills. This programme is for adults 18 years and over. It is suitable for you if you are: living with one or more long-term health conditions (For example stroke, diabetes, heart failure, asthma, COPD, arthritis, Multiple Sclerosis, muscular dystrophy, depression, arthritis, Crohn’s, Colitis) caring for someone with a long-term health condition, depression, intellectual disability or dementia feeling low, anxious, unhappy or depressed Instructors/Tutors are specially trained to facilitate the workshops. All have personal experience of living with a long-term physical or mental health condition. Cost: €20 for 6 sessions, course handbook and refreshments Waterford: Sacred Heart Family Resource Centre, Richardson’s Meadows, Kilcohan, Co Waterford. Starts: Thursday the 11th April from 11am-1.30pm for 6 weeks. Book a place by ringing Joan or Gillian on 051 306728 or via Eventbrite Wexford: South West Wexford Family resource Centre, New Ross, Co Wexford. Starts: Monday 29th April 7pm-9.30pm for 6 weeks. Book by ringing Lana or Denis on 086 8163772 or via Eventbrite Carlow: Bagnelstown Family Resource Centre, Bagnelstown, Co Carlow. Starts: Friday the 3rd May from 10.30am-1pm for 6 weeks. Book by ringing Lana or Denis on 086 8163772 or via Eventbrite Part funded by the Lottery Grant from South East Community Healthcare (HSE)
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.
Join our MS Squad for the Vhi Women's Mini Marathon on June 2nd and help us raise essential funds for our support services across Ireland. Sign up early to make sure you’re in!
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23 April 2019: Yoga classes for people with MS, starts 8th January (ongoing)
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