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

  • Photo for article: My Passion Piece - Music Festivals

    My Passion Piece - Music Festivals

    This week Niamh McCarron writes about MS, music festivals, camping, muddy fields and shares some festival survival tips! One of the things I most enjoy doing is getting away for a few days, forgetting all about work, MS and daily life. Luckily every few months we are in a position to head off for a week; in-between we squeeze in the odd over-nighter. I’m very aware that I might not always be well enough to hop in the car or on a plane so for now I am making the most of it! This piece isn’t meant to be about MS, not today, but in reality, I have to consider it when I am making plans to escape for a while. I need to know that the places we visit are suitable and factor that in. So, the fact that one of the things I love to do most is to attend music festivals in our tent, might come as a surprise to people.  In fact, it’s down to MS Ireland that I discovered music festivals are my “thing”. A few years ago, Vantastival was announced as a charity partner of MS Ireland, and it popped up on my Facebook feed. As always, I was nosey and had a snoop around their website and ended up buying tickets for the weekend. Little did I realise I’d be bitten by the festival bug! That first weekend trip was an eye-opener - both good and bad. Overall, I thoroughly enjoyed it and even spent a happy hour shaking the MS Ireland collection bucket. Everyone was very friendly and welcoming, and we quickly settled into our weekend lodgings. I am a wimp when it comes to camping. I don’t like to take any chances, so I bring duvets and pillows and loads of clothes- I don’t like being cold and tents get very cold at night.  I hadn’t really allowed for the lack of sleep, and lack of toilets. These are two things that I really need to cope with my MS symptoms, so I wasn’t feeling too great by the middle of day two. It took me a few days to recover from the tiredness when I got home, and I realised I’d need to be better prepared in the future. Since then, we’ve been back to Vantastival and tried out Electric Picnic last year. I am always a bit nervous of going to something new- just in case it isn’t MS friendly- but I’ve been pleasantly surprised each time by the accommodations made, ensuring that I have a great weekend and feel well looked after. Electric Picnic in particular stands out- they have a specific camping area for people with disabilities, with staff on the gate at all times. These guys go out of their way to lend a hand, putting up tents and making sure you’re comfortable. They have a fridge for meds and keep an eye on everyone, without it feeling obtrusive. The facilities at each stage or tent are great too- there are platforms for wheelchairs and seating for people who can’t stand for long. Each festival is a new experience and so far we’ve enjoyed every one. Our camping expectations have moved on- chances are we’re going to get soaked, covered in dirt and possibly sunburnt, all in the same day. We’ll end up stinking and longing for a hot shower and a bed more than two-inches off the ground. There will be little or no sleep late into the night, so I’ll aim for a cat nap during the afternoon. I also got around the lack of toilet by buying my own!  But none of that will matter this summer when we’re enjoying a few drinks, listening to the music and eating chips out of a van. We won’t have phones or laptops or meetings or deadlines. My tickets are booked and there is a big X on my calendar – sometimes the count-down is as enjoyable as the event itself!

    Author: Niamh McCarron - 23 Feb 2017

  • Photo for article: MS and Me: Money Part 2

    MS and Me: Money Part 2

    Last month Emma Rogan started a conversation about having MS and money. What impact did being diagnosed with MS have on her finances and outlook? This week she’s full on with her own financial planning, revealing the steps that are making a difference, financially speaking, to her life.  Writing this piece and reflecting on the topic has given me the opportunity to really get REAL. Sitting in the hospital on D-Day after I got the news, one of the prevailing thoughts I had was can I still work? Earn money? Would I ever achieve my ambitions now I had MS? The turmoil and the chaos of those few minutes left me with long-term concerns about staying financially independent. All in the space of a few minutes! By getting organised, realistic about my current situation and respecting money for what it can do for me, I’m already seeing positive changes.  Stock take: First things first, I needed to take stock to get an accurate picture of my situation. There isn’t any point fudging the figures, the plan has to start with the reality. But to actually get to that point, there must be integrity. Maths don’t lie. But I delude myself. From this I can then set out your future truth – what I really want in life and plan to that.  Forecast: It is still early enough in the year to forecast, to look ahead in the year and really get a perspective on what my income and outgoings look like. Do I expect my car insurance to go up (again!), what about my home insurance or health care? I know when I was relying on benefits it was even harder to focus on the reality but it was more important. Adjustment: I can plan and forecast and analyse but all this will fall if the plan doesn’t meet my needs. Any adjustment in spending to be reduced in line with our value systems. For me that means that my daily coffee at 7.30am before I get to work will stay but buying a new top or jeans goes way down the list. Education is important here- read articles on personal finance and understand your debt and what is costing you’re the most. Now that I’ve taken stock, looked at the year ahead and made some adjustments, I’m using the Toshi Finance app to keep track and monitor the progress against the Plan. If you prefer pen and paper, do it. Keep track in a way that suits you, decide on a frequency, a methodology. If the reality is not fitting with the plan go back to the plan and make sure your values are in there and ask why it isn’t working. Just hear it and see what you can do with it.  There will be surprises – things break cars, showers-  people celebrate engagements, birth, getting married; bills get crazy; my toddler calls Australia… these or something like these will happen. WILL happen. When they do adjust and re-plan. Don’t stop but do make ‘unexpected’ part of the plan. Reward planning and if you find it tough going make sure you celebrate the wins. Ideally a non-financially devastating reward would be great but be prepared to pay for a treat as well! Make being open part of your plan to let the people in your life know you’re making different financial decisions. Some people find it difficult to say ‘I don’t have the money’. But that is a circumstance and in no way reflects who you are or your value as a person. A fundamental aspect of good business is financial planning and we should feel equally empowered to do the same for our personal lives. Keep talking about it. Remember deliberate earning, saving and spending are very different to being ‘mean’ which is another Irish ‘no-no’. Don’t let a fear of being labelled mean have you spend to disprove it. I’ve learned this the hard way.  It is a relationship – so there will be ups and downs, wins and losses, arguments (with yourself!). But over time there will be a profound and consistent change that will bring you what you choose.  MS and Me: Money Part 1 Join Emma on Twitter and check out her blog     

    Author: Emma Rogan - 16 Feb 2017

  • Photo for article: Kiss Goodbye To MS

    Kiss Goodbye To MS

    'Oh, give a little. Helps a lot’ - Quotation from The Snapper, by Roddy Doyle When the ‘MS and Me’ blog team were looking at the blog topic schedule for this year, the ‘Kiss Goodbye to MS fundraising campaign’ option appealed to me immediately. Because I wear red lipstick and spend, what some might say, is a disproportionate amount of time talking about it! I don’t remember exactly when I decided to ditch subtler tones and go red, but I think it was around the time I was diagnosed with Multiple Sclerosis. It provides a moral boost of sorts and a distraction from the sometimes sunken eyes, creating the illusion that all was well, even if it isn’t. The red lippie has become my fight song and my security blanket. I often mention it in blogs and as an unexpected consequence I have received numerous lipstick related gifts and cards that always make me smile.  But of course, the ‘Kiss Goodbye to MS’ campaign is greater than one gal’s war paint. It is a global fundraising campaign that raises funds and awareness for Multiple Sclerosis. Between now and February 14th, Multiple Sclerosis Ireland along with 11 other countries are asking people ‘what are you doing to KISS GOODBYE TO MS?’ The campaign calls on supporters to wear, dare or share to fundraise: ’Wear’ red lipstick (or anything red) and post your pout on social media, using the hashtag #kissgoodbyetoms and texting ‘Smooch’ to 50300 to donate €4. ‘Dare’ by getting sponsored to do an event. ‘Share’ by holding a fundraising event. What better way is there to share the Valentine’s Day love?  But can a donation of just €4 really make a difference? Of course it can, you just need to think BIG. The phenomenon of crowdfunding whereby a large number of people donate a small amount of money for a specified project has been around for a long time. Did you know that the first such campaign in the United States of America was one to raise funds towards the Statue of Liberty in the 1880’s? The Statue was a diplomatic gift from France but the USA had been unable to raise $250,000 for a granite pedestal for the statue (around $6.3m in today's prices). But following a newspaper campaign in ‘The New York World’ and the small donations of hundreds of residents the base was eventually built.  In recent years crowdfunding really came to the fore in Ireland. As a result, feature films have been made that may never have reached the big screen, books have been bound that would have remained unpublished and indeed, the profiles of many charities have been raised.   I’m hoping that ‘Kiss Goodbye to MS’ will have a broad appeal. The campaign can raise much needed funds for Multiple Sclerosis Ireland – a charity that has done so much to help me and countless other people with MS and their families, on days when the red lippy just doesn’t cut it! Increased funding will assist research that may someday lead to a cure for MS but in the meantime improves patient options. This campaign is FUN. It’s your chance to strike a pose or just to do something silly all in the name of charity. Why not go all out and do a marriage proposal? If it all goes pear shaped you can dismiss it as a ’dare’ for the Kiss Goodbye to MS campaign. If the proposal goes well, ‘share’ your video on social media and become an internet sensation! There’s no need to buy me chocolates, flowers or a card for Valentine’s Day. Just text ‘Smooch’ to 50300 to donate €4 to Kiss Goodbye to MS, and don’t forget the #kissgoodbyetoms hashtag and I will be a happy woman. Psst - I thought that I’d mention that I am running low on red lipstick. I’m not dropping hints. I swear… First published February 2016

    Author: Lucina Russell - 09 Feb 2017

  • Photo for article: A Letter to Me

    A Letter to Me

    This week Aoife Kirwan has gone back in time, to the day she was first diagnosed with MS; standing face to face with her newly diagnosed self, she shares with us what she would say to herself on that day. Recently I took a trip with some of my fellow bloggers to Lisbon. During a chat over coffee with one of the ladies the subject of' 'When I was diagnosed' came up. It inspired me to go rooting though my college boxes when I got home and I found a notebook I had while I was going through the diagnostic process. When I think back to that time I tell myself that I remember every thought and every feeling I had. Well it turns out that I don't. When I was reading over my written ramblings I felt as if it was written by a different person. Life really has moved on so far in the short 3 years since I was diagnosed. I read about the fears I had, the feelings I experiences and the thoughts that came to me. The trauma of the diagnosis had given me such a distorted view of my life and my future. I thought I was fine, but looking back it was an extremely traumatic time in my life. I was wasting energy thinking about something that might never happen. This got me thinking about the advice I would give myself if I could magically send a letter to the past. Here is my letter to me: Dear Aoife, You were semi-prepared for today. You prepared for the worst while hoping for the best, and (as you think) 'as usual' it has turned out to be the worst. Turn off your phone for a few hours and give yourself a chance to absorb what's just happened. The outside world can wait. Everything is going to be alright. You are going to regain 20/20 vision, so that lovely image in your mind of yourself with secretary glasses will have to wait for a while.  This is a scary time, allow yourself to feel the way you feel - there is no right or wrong way. Let your family know how you are feeling. They just got the news too… they are all feeling for you and wishing that it was them and not you. But it is you, and you are the one who is glad that it's you and not one of them. They are always going to be there to help out. They will do their best to support you and make sure that life goes on as normal. Share with them; let them know that you are allowing them on this journey with you and that you won't hide any symptoms or feelings from them. They will worry twice as much if they think they have to guess how you might be feeling. Just be open and honest and then they know the situation and they can help you more effectively. Keep going with college, there are only a couple of months left. You'll have to fight for it because you will be asked to defer, but keep going, you'll do it, don't give in. Do what’s best for you and not what's easiest for someone else.   Don't pre-empt what 'could' happen. So far so good, nothing you were afraid of has happened at this point. Remember that MS could have no affect on you for quite some time. Take each day as it comes and try not to worry so much. You will look back and think it was ridiculous to worry the way you did, and you'll feel like the diagnosis was small in comparison to the emotional turmoil you put yourself through by worrying about something that might never happen.   Forget the idea in your mind of what you think MS is. It's not something that is associated with older people. I know you are scared at looking at the possibilities of the future, but you'll change your mind on this. You will read and research tirelessly and you will begin to love it. Information is power and you will crave it. Get in touch with the MS Society. Engage with the community, they have all been where you are now. Don't be afraid to look at information, you will benefit from reading it and the fear that you have now will turn into knowledge. Instead of feeling like MS is unpredictable you will feel that knowing the possibilities puts you back in control. Instead of focusing on the negative elements of this, look for the good in it. In fact take that as general life advice and not just in relation to MS. It will make you a lot happier!  Trust yourself and trust your judgement. No doctor has experienced things the way you have. Nobody has experienced your experience, so you are the expert here. If you disagree or don't understand something fully, ask, question, interact with your doctor/nurse. They can't answer questions you don't ask. Remember, that you are in charge here, you are taking advice, but your decisions are your own and you need to be the one to make them. You can't expect someone else to make the decisions ahead of you, even though you would like to pass on that responsibility, you really do need to own it. It will make you stronger.   Know that medications are there but it doesn't mean that you have to take them. If you don't want to, discuss that with your doctor. Tell them how you are feeling about it. You don't have to feel in a rush to make a decision on a treatment plan, that all work long-term so don't feel under any pressure to push yourself into a decision. Take your time, relax and breathe.  Aoife 'A letter to Me' was first published on the 14th August 2014.

    Author: Aoife Kirwan - 02 Feb 2017

  • Photo for article: Health, Stress and MS

    Health, Stress and MS

    This week Lucina Russell reflects on her recent good health and wonders if stress has affected her MS progression. I feel like a bit of a fraud writing for ‘MS & Me’ these days. Truth is, Dear Reader, that I have been in such good health, that I haven’t been spending much time thinking about the MS monkey on my back.  I wish I could say that there is a magic formula for my wellness that I could sprinkle over my fellow MSers who aren’t as fortunate as me, but I don’t. All I can do is share my experience.  Since my diagnosis 6 years ago, after a terrifying experience with optic neuritis (blurred vision), I have tried lotions and potions, medication, diet and exercise to increase my wellness and yet I struggled in the early years with fatigue, insomnia, headaches and pain.  With two small children and a full time job, it wasn’t easy. All this time, there have been many advancements towards a cure for Multiple Sclerosis and many developments in treatments, but I have found myself overwhelmed by the science behind it, to the point that I don’t read them anymore. If there was an exam on MS Studies, I would be in the dunce’s corner. But in the last two years particularly, my health has taken a turn for the better, to the point that I could almost say that I am ‘cured’ (in as far as one can, with a chronic illness).      My secret? I think it’s a combination of...  a] Good fortune  b] My medication. Yes folks, it appears that sometimes the drugs DO work (I take a weekly interferon intramuscular injection – I can’t say that I look forward to it every week, but hey!). c] Managing stress. Easier said than done, I know and a certain amount is unavoidable and probably necessary to keep one's adrenaline flowing. With this in mind, one of the best pieces of advice that I received from my MS community worker when I was diagnosed with MS initially, was to hold off on making drastic decisions, to settle into my new found skin, uncomfortable as it felt.  In the meantime, I had an experience that I won’t describe here, other than to say that my tale wouldn’t be out of place on an extreme reality TV show like Jeremy Kyle. While I confided in a few close friends, I generally buried what had happened, piled on the red lippy and carried on. In hindsight though, I feel that my MS flair was a cry for help from my jaded body that couldn’t take much more. It was the persistent child tugging at my clothes that I chose to ignore. In turn, I used my MS as an excuse for not making changes. But eventually, I listened and made some life changing decisions, which has made me well again and happy. Friends I haven’t seen for a while comment that I look really well, examining my face, saying that they can’t quite put their finger on what’s different.    I wonder if I had I responded to the persistent child tugging all those years ago, would my MS have stayed dormant, or not develop at all? Who knows and it doesn't matter now. I’m just grateful that I have had this opportunity.    

    Author: Lucina Russell - 26 Jan 2017

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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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