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

  • Photo for article: Before MS I...

    Before MS I...

    Before MS I really took my health for granted. I rarely went to the doctor. I was afraid of needles. I didn't think about what I ate or what time I ate it. I took little things for granted like ticking 'no' when asked if I had any known medical conditions. I guess I never really had to consider these things before and each first that came along really got to me. When shopping for car insurance after my diagnosis I wasn't able to get many quotes online because I had to tick 'yes' to the medical condition. There are more obstacles in the way... extra paperwork! Before MS I thought I had all the time in the world to achieve life goals. Now I have to plan, I have to think ahead, I have to achieve goals in a shorter space of time. Life is harder, and I am harder on myself because of it. Before it became apparent in me, I didn't think young people could 'get' it. I never thought that I would have all this on top of 'normal' life. Before MS I didn't see the injustice of our health system. I didn't know that people had to fight for treatments. I didn't know that your postal address determined what you were entitled to. I had no idea that life was made harder for those who it was already hard for. Before MS I never questioned the opinion of a doctor, I trusted in them completely. I never thought that my opinion would factor into a medical decision. I never knew I would have the confidence in myself to make decisions that affect my health. Before MS I couldn't pronounce the word encephalomyelitis. I had never set foot inside a research lab but since my diagnosis I have travelled to the International Multiple Sclerosis Research Centre in New York, twice! Before MS I never knew I would have such an interest in research and information and even more, sharing that. Before MS I did not know that the MS community was made up of very smart, wonderful and strong people. Before MS I probably would have considered MS a weakness but now I know that having MS and carrying on with life as normal requires more strength than most people have. We don't always realize how strong we are until being strong is the only choice there is.

    Author: Aoife Kirwan - 29 Oct 2014

  • Photo for article: Depression and MS

    Depression and MS

    Sometimes I wonder how fictional characters would respond if they had a chronic illness like MS. What would Mary Poppins do? Would she keep the chin up and sing a cheerful song- even though the magic umbrella is not what it used to be since the last relapse? Would she get on with her chores even though she is so tired, she could fall asleep on top of a “Chim Chim Cher-ee”? What would Nidge from Love/Hate do? Would he have the MRI machine blown to smithereens for ratting on him? Would he spot a niche in the market and set up a nice little earner dealing dodgy M.S. drugs? What would the granny from Downton do? No doubt she would ring the bell for a double brandy- followed by a witty quip on how this damned illness wasn’t going to beat a Dowager.   Back to real life and my own situation. I am the star of my own show. The writers have thrown me a curve ball. I have M.S. There is no cure. I am affected every day. I get depressed about this sometimes.  I would rather write a blog about haemorrhoids than my battles with depression but I think it’s important to share so that others can see that they are not alone. “Previously- on the Joan Jordan show!!! Joan knows there is something very wrong with her health. She experiences anxiety and worries constantly. She has trouble sleeping and can’t relax. Then, Joan gets diagnosed with M.S- which explains her symptoms but leaves her feeling very low. She has no interest in life. She stops picking up the phone and people stop calling her. She doesn’t want to do anything but sleep- not even eat. Days drift into each other. She is no fun to be around……” When I was expecting my first baby, I read every childbirth book I could get my hands on. My birthing plan went into intricate detail, describing exactly what was going to happen and when. Nothing could have prepared me for what actually did happen when the contractions started. The theory all went out the hospital window and I had no choice but to go with the flow. It’s much like how I felt when depression first came knocking on my door. I knew lots about it but nothing about how it actually felt to have it. Looking back, the anxiety came when I didn’t know what was wrong with me and the depression came when I did. I am probably a text book case- although in my situation, the acceptance phase took a while to come! I’m glad that acceptance of my M.S finally did come because I was using all my energy fighting something I am not in control of. I needed my brain to stop going over and over and over the facts. I missed out a lot on life while I was depressed. William and Kate got married and I didn’t even care!! I got grievously wounded by friends who stopped sending me birthday cards. It seemed like everybody else on Facebook was having a much better time than I was. I felt alone- even though I was in company. Getting out of the hole didn’t happen overnight for me. In my case, talking to the right people was what worked. Things fell into place after that. Diet and exercise played a big part but they came after. I find my local M.S. support group wonderful. When you have friends who are in the same boat- people who really get where you are coming from, things don’t seem so impossible. Be warned though- just because somebody happens to have the same illness as you, doesn’t mean you will be kindred spirits! Like my friends Mary, Nidge and the Dowager- different people react differently to life events. I’m not sure if I am prone to depression or if I just got depressed because a series of particularly rubbish things happened to me all at once. Around here, it would be said that I had a “shite year” in 2011. I hope that I am better prepared to read the warning signs should depression come knocking at my door again. I also hope that I will be able to help others by speaking out about how dreadful it feels and what helped me out of the pit of despair. Having M.S is depressing. It just is. Stephen Fry said that “It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do”. I am so thankful to the people in my life that stood by me during my dark days. Like Elsa from Frozen, I also try to “Let it Goooooooooo” and forgive the people who didn’t.  I never expected to experience depression but now that I have, I’m going to do all I can to read the signs and head it off at the pass if it comes knocking at my door again. Having come through it’s horrors, I want to stand up and say that I’m NOT ashamed and that there IS a way past it. Have you experienced depression associated with your MS? Do you have any tips on how to cope with the bad days?   

    Author: Joan Jordan - 23 Oct 2014

  • 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

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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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