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

  • Photo for article: Today, I will make a difference

    Today, I will make a difference

    Part 2 - Helen continues to give her list of daily tasks a proper go to 'get happy' I’m a serious person so guffawing heartily each day was always going to be a challenge. Having a son, husband  and cat makes it much easier. The other day I was horrified to hear 6 year-old son hissing ‘boobies, boobies, boobies, boobies’ under his breath at dinner. ‘Just WHAT do you think you’re saying’? I demanded, utterly shocked, and was even more horrified when he said innocently ‘what’s the problem Mammy?’. It turned out he was protesting at the choice of vegetables I’d given him and was mouthing “Boo! – peas. Boo!- peas.” under his breath. Good laugh for the day was sorted.  Exercising half and hour, three times a week seems so, so far away from me some weeks. Other weeks it feels like the bare minimum. It’s something I aim for, but do not always achieve. When I do achieve it, I have less pain, sleep better, and feel more positive. Colds get in the way. Chest infections. Weeks that sometimes merge into months with MS balance problems. I do what is needed of me and exercise is surplus to requirements. But I never give up returning to it.  I found smiling at, and saying hello to strangers very painful at first. I cringed inside each time I did it and the first time a person just ignored my ‘hello’ I felt really silly, but it became easier. For those that don’t reply I put it down to shyness on their part, or they could be mulling over something, but I let it go. It’s lovely when you meet other friendly people.  I can definitely say I’ve followed number 9 to the letter, by cutting my TV time in half, but I’m not sure they meant increase it commensurately with screen-time instead. Oh but I love the Internet, Facebook, message boards! The world available at the click of a screen. A news story excites a load of new questions to be answered, mental paths to be followed and discovered. I love Facebook and the way you can share what is going on in your friends’ lives.  Spreading kindness and doing a good turn each day was tough at first, sounding like a self-conscious exercise in showing off how wonderful you are. It is actually completely addictive and private. Let a person out ahead of you on the road, then watch them do the same to other road users. Know that you have ‘shared the love’! Give someone a small anonymous present in work; never tell. Do guerilla-gardening and plant stuff secretly in marginal unused land, scatter seeds, or make free cuttings for work-mates or friends. Bake a cake for somebody. Tell a friend of a job offer you’ve seen that might suit them. Give a partner a back-massage, or read them a story aloud. Send a friend a card or real letter in the post. Pass on unused parking passes to others when leaving a car-park. Set up a “Tiny Free Library” – Google this, it’s a lovely idea. Even when out of money, there are so many ways we can be kind to others.  Make the effort, decide to take the chance on something that might seem a little silly. Put yourself out there and do it.  There are probably a few Happiness commandments I’d add in, just for those of us living with MS. Learn to recognise your limits and organise your life around these, rather than running on empty. Be kind to yourself and accept you may achieve less than you hoped for. Make no apologies; you did not ask for MS. Happiness is the ultimate goal of so much advertising, psychoanalysis, medication, and life-coaching. Swathes of magazines are devoted to it. Shelves buckle slowly under the weight of self-help and happiness-seeking manuals. I saw an interpretation of English phrases and ‘not too bad, actually’ as an answer to ‘how are you keeping?’ really means ‘I’m happier than I’ve ever felt in my life’. I can honestly say that I’m not too bad, actually.  When you stop looking for the holy grail of 'Happiness' and try sharing what you have with others, you are more likely to achieve it yourself. MS or not, we all can do that. Further reading:  Today, I will make a difference - Part 1 Making Slough Happy  How to be happy: lessons from Making Slough Happy  The Happiness Manifesto  10 Surefire ways to achieve unhappiness 

    Author: Helen Farrell - 16 Oct 2014

  • Photo for article: Today, I will make a difference

    Today, I will make a difference

    Part 1 - A list of daily tasks to get happy! Making Slough Happy was the uninspiring title of the handout. I imagined a bland land of modern housing, industrial units and prefab workplaces populated with painful bosses like David Brent. My colleague passed around the page and I thought I might give it a try that year, 2006, as my New Year’s resolution. Blue-tacked onto a central place on my fridge it would be a constant reminder. The recommendations from the handout suggested ten daily tasks in order to achieve happiness. A new “10 commandments” for the secular existance of many of us. 1. Plant something and nurture it 2. Count your blessings – at least five – at the end of the day 3. Take time to talk – have an hour-long conversation with a loved one each week 4. Phone a friend whom you have not spoken to for a while and arrange to meet up 5. Give yourself a treat every day and take the time to really enjoy it 6. Have a good laugh at least once a day 7. Get physical – exercise for half an hour three times a week 8. Smile at and/or say hello to a stranger at least once a day 9. Cut your TV viewing in half 10. Spread some kindness – do a good turn for someone every day At first, looking at it up on my fridge, it seemed like happiness-by-numbers; forced and trite. Cynical by nature, I gave myself a psychological kick in the backside and decided to give it a proper go. Planting something was no problem, or keeping it alive either, because I am blessed with my Granny Alice’s green-fingered ability to coax most growing things into health. Do sons count too? Parents of small children will appreciate near-misses and the feeling of relief when you realise your child is still alive despite your shortcomings and oversights. The near-misses and the sickening realisation that you took your eye off the ball, or son, as the case may be. Those lovely moments when you look in on your sleeping child on your way to bed, and they are in a deep, sweet sleep, warm and safe. Sometimes I can slide into a mood of negativity when the bills group together relentlessly, when I’ve had a bad day in work or when I’ve let myself get overwhelmed and tired, but I do try to count my blessings. ‘At least I have my health’ is most people’s bottom line but really MSers don’t really have that luxury! We can choose to see positivity in our lives, despite MS, and we have so much to give to others. Money worries, MS, lack of control, the unknown, pain, insomnia – not blessings. Family, love, pets, nature, good music that makes you dance in your kitchen, beautiful sunsets, positive feedback from a job you’ve done, kind neighbours, good books from the library and talking books when you don’t feel like reading, a day of good energy out of the blue, flowers, a piece of good street art – these are all blessings that add up. I know marriages and friendships need unrushed time to flourish yet I’m definitely guilty of not making enough time for this. Have I always talked to my husband for an hour, uninterrupted, each week? Probably not. When we do make the effort it’s always worthwhile, even if we are ready to throttle each other over petty annoyances that have escalated to a level of nonsense. After talking properly, really listening and sharing our experiences, we reach a shared understanding. Phoning a friend seems like more than I can cope with at the end of some days. Bad MS-days always make me want to withdraw from people, yet it’s always worth it. You always come away with a warm feeling inside, having connected with someone you understand, and who understands you. Friends always bring me back to the shared times we’ve spent together, remind me of our future plans and hopes. Good friends encourage a true sense of self, and you do the same for them. One of the loveliest things is to feel useful to someone, to feel needed. We can be a good friend to others, providing support and empathy. I really struggled with the concept of giving myself a treat every day. On face value that sounded like buying something for myself, or eating chocolate. Sometimes the treat was to put my feet up for half and hour and stop pressurising myself about ironing, cooking, cleaning, reading for work, things to do and tick off lists. To just stop and be calm. Making the effort of doing my hair always makes me happier. Creating a board of photos that make you happy on Pinterest. Blowing bubbles in the park with my son. Or it could be a day of finishing all the projects I’ve left around the place, stressing me out. Over the last 2 years it has been the exciting decision to tackle music as a complete beginner. Other times it’s booking a free workshop in my local library, or taking time to see a friend. Quite regularly my treat is still chocolate! Part two next week...

    Author: Helen Farrell - 09 Oct 2014

  • Photo for article: Blog Awards Update

    Blog Awards Update

    MS & Me - Blog Awards Ireland Finalist! On Saturday night two of our fantastic bloggers, Aoife and Lucina, represented our community blog, MS & Me at the Blog Awards Ireland in the Weston Hotel, Kildare. MS & Me reached the final in two categories - Best Blog 2014 and Best Group Blog. Although we did not win on the night this takes nothing away from the dedication, hard work and openness of our blog team - who hail from every corner of Ireland - have shown over the past ten months. Quite simply without this team MS & Me would not exist. We're all excited about what the future holds for MS & Me and hope you'll continue the exciting journey with us. Congratulations and thank you to all our bloggers for sharing their MS stories and everyday life with us. Further reading MS & Me Community Blog Meet our Bloggers

    Author: MS Ireland - 06 Oct 2014

  • Photo for article: My MS Care Team

    My MS Care Team

    From Willeke's own experience her medical team has been pivotal to her care and have been outstanding so far! With an illness like multiple sclerosis, a diagnosis doesn’t come alone. Depending on the type and severity of your MS, you are immediately served by several people from different medical fields. Whether you want or need them is up to you, or in other cases, up to your neurologist. As well as a neurologist, MS medical teams can consist of dedicated MS nurses linked to your type of disease modifying medication, physiotherapy, speech, occupational, ophthalmology, neuropsychology and urology teams.  These are just some of the few doctors you might be linked to at some stage in your illness progression. Nobody should go through their illness completely on their own, especially when you feel a bit rough around the edges. From my own experience, my medical team has been pivotal to my care and has been outstanding so far. Since the day of diagnosis, they’ve taken away worry and instead replaced it with the knowledge that on this journey, I am surrounded by experts in their medical field.  Together with my care team, we talk about everything very openly as I don’t want to be served with half-truths and empty promises. They continue to teach me about my illness and push me forward studying it myself. It’s an ongoing relationship I’m committed to, and I know my care team wants me to have the best they can offer. Because of harsh cutbacks in healthcare, I might not get an appointment straight away, but I know I will be seen to at some stage. With my symptoms fairly manageable at home, I now see less of my medical team than at the time of retiring when I needed more medical care. This perhaps shows that at least in my case, I am getting the care I need, and that this care, works. To have a relationship, there need to be at least two people, so equally important to my healthcare, is a promise I made to myself. I mentally I signed a contract to take ownership of my illness by going to each appointment and having faith that whatever medication would be offered, to believe in its ability to tackle my symptoms. To finish this, I would like to thank those who keep tackling my illness and all my questions every time we meet. Specific names elude me right now, but my GP as well as my neurologist Professor Orla Hardiman and her multidisciplinary team at Beaumont Hospital, deserve to be mentioned.  Another big part of my care team, is MS Ireland itself. They provide excellent advice on how to live well with MS, something that can only relax your mind. And that at the end of the day, is worth millions. Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more.

    Author: Willeke Van Eeckhoutte - 02 Oct 2014

  • Photo for article: Quality of Life

    Quality of Life

    How full is your (tea) cup? This week Emma talks about what Quality of Life means to someone living with MS and what it means to be brave. I love tea, in particular ‘Irish’ tea. From morning to late afternoon a cup of that golden-brown liquid deliciousness is usually enough to cheer me up and set me ‘right’ even if just for a little time. I like mine fairly strong with almond milk (dairy-free) or black with a slice of lemon. In many ways, tea is the best social lubricant at any event, never mind what people say about alcohol.  But not everyone likes strong tea with lemon. You might like weaker tea with sugar, prefer herbal tea or, like so many people, you just don’t like tea at all. You choose something else because it suits you better. So it is when we try to measure Quality of Life, it’s the same but different for all yet…. What does it mean when we’re all coming from very different experiences, cultures, backgrounds, diagnoses and MS symptoms?  In the 1940s Abraham Maslow, discussed in a psychology research paper, theories of human motivation that have been popularised by a pyramid shape with the most basic needs at the bottom. Once the first needs were met, a person would then be free to consider the second and so on.  Physiological Needs- air, food, water, sex Safety Needs - shelter, security, freedom from fear Love and Belongingness Needs - friendship, intimacy, affection, love from family Esteem Needs- confidence, achievement, independence, self-respect, respect from others Self-actualisation- realising personal potential, to become the person you would be Quality of Life (QoL) refers to the general well-being of people and society. It has many facets to be considered including environment we live in, our emotional, physical and mental health, education and sense of social belonging.  Multiple sclerosis messes up every theory. My life was turned upside down and measurements fell by the wayside. Problems in life, problems dealing with the symptoms, problem reactions, problems with others, problems with relationships, we think we are our own problem and we daren’t imagine that anything different, something better, is possible.  We fluctuate between apathy to life to compassion for ourselves. Relationships MS takes hold of a person and scares the rest of what was the ‘self’ into hiding. How do we ever get back from that? It doesn’t change by accident, it does take a lot of time and it can be exhausting. But there is no other option if we are to have a good Quality of Life based on our own personal design. Yes, MS was once the very worst thing that could ever happen to me. What I’ve discovered is that the only way to have any good/great Quality of Life is to have a sense of ‘self-worth’. It means confidence, being focused on what I need to thrive, respecting myself and others and not being distracted from being the best version of myself.  A friend, who has since passed away, used to knock joy out of every moment. No matter what, he’d have me cracking up from the moment I collected him and his wheelchair accessible van to go to a branch meeting, to when we parted. He was never afraid to be afraid, to be happy. He reminded me to be brave. Viktor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. Now, where’s my tea? Let’s talk more about this and other MS/life stuff. Join me on Twitter or http://republicofemma.wordpress.com   

    Author: Emma Rogan - 25 Sep 2014

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