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

  • Photo for article: MS and Romance

    MS and Romance

    On this Valentine’s Day when many of us choose to celebrate romantic love, Christina McDonald and Niall McGahon give us their take on MS and Romance.  Christina We see it all around us.  On the streets, in movies and in songs, love and romance. They are everyone’s desire at some point. I was diagnosed at 26 in the common age range for an MS diagnosis (20s-40s). These are also the years seen as someone’s prime years- in college, looking for love, perhaps settling in with someone, building a career, getting married and all the typical life-steps.  MS at times has changed how I view myself as a woman. Questions constantly loom such as “am I a burden for my partner?” or “am I still attractive when my symptoms peak?” or “have I embarrassed you in public? “Am I still fun to be around when my fatigue is bad? Sometimes I wish I could be more spontaneous and that I had more energy like I used to before MS. It can be difficult to maintain a romantic relationship when you’re living with MS but with two people who compromise and understand the difficulties that may arise from MS, they can plan around what suits their needs and keep the spark alight. The thing is, I am not my disease, I am not MS. While those questions might go through my mind, I know that when my partner looks at me, she still sees the person that she fell in love with and not the condition. Although we might not go out for date nights as much as we used to, we still make a joint effort in bringing a date night to us. This includes nights in with a movie and takeaway - Netflix and chilling out. We tend to do things earlier so that I have more energy. Compromise is key for myself and my partner when it comes to MS and romance.  I see myself as lucky because I had found “the one” before my diagnosis so I didn’t have to worry about how to tell someone I’m dating about my condition. My partner has been with me every step of the way.  Niall’s Perspective  I think it’s fair to be said most men don’t live up to the Hollywood romance and the way it’s sometimes portrayed but god do we try our best! By the time of my diagnosis at the age of 34, I had met my beautiful wife and we were 4 years married. We now have a beautiful son and another on the way. Like Christina, I never had to go through the process of having to tell someone about my condition. I thank god every day for that because without my wife going through this process with me, I don’t think I would be as strong as I am now.  One of the definitions I found for Romance was: “feeling of mystery, excitement, and remoteness from everyday life” Quite apt for both MS and romance with a loved one. The illness fills your head full of mystery about the future and sometimes pulls you back and isolates you into a remote-ness from your everyday life. MS gives you a kick in the nuts, excuse the pun, from an in-timacy perspective. I’ve found myself questioning myself on countless occasions “Jesus you’re useless…”, “how embarrassing…” and as time progresses this can eat at you and sometimes it’s easier not to try.  Thankfully I get a kick up the ass and get pulled out of whatever dark room I may have entered. All because the person who, 13 years ago filled my head full of mystery of what could be, of excitement of what was to come, took me to a remote place that was only her and I.  To me romance is not necessarily about the big gestures; it may have been that a few years ago. Sometimes the smallest of things can be the most romantic. The spontaneous back and foot rub, the dinner made or simply the holding of hands. These all may seem the easiest for most. However when you have little feeling in your dominant hand these tasks become even more challenging but more enjoyable and appreciated when they are done. Christina is right, Netflix and chilling on our own sofa is a bloody good date night too! My perspective on life with MS is about team work. Like Christina, we are not MS, it doesn’t define us. We have the full understanding that the love that we first found all those years ago is not going to be broken by MS, we are only going to get stronger. Ro-mance is not dead, it has just taken on a different form and that’s ok because it will never disappear.

    Author: Christina McDonald and Niall McGahon - 14 Feb 2019

  • Photo for article: Women in Science

    Women in Science

    To mark the International Day of Women and Girls in Science on 11th February, this week our MS and Me blogger Ciara O’Meara highlights the women of science and innovation who have changed the world for us all.  The importance of science is too great to ever be underestimated or underappreciated. Without developments and continued progress and innovation in the world of science, we would not have the knowledge and information to understand the behaviour of the world around us. My own thinking on science has evolved dramatically throughout my own life journey. From a naïve and frustrated Leaving Certificate Chemistry student, I am now an avid subscriber to scientific research based journals and a research contributor.  My initial train of thought on this topic ran something like this: Marie Curie- The first person to win a Nobel Prize in two different fields for her ground breaking work on radioactivity, Leaving Certificate Chemistry- the fear of remembering the difference between organic and inorganic compounds and that dreaded periodic table Florence Nightingale- the founder of modern nursing and instigator of professional training standards and better health outcomes Fourth Year Bachelors Degree Nursing Research Proposal- literature reviews were the bane of my life and this concept of methodology and sample size was seriously impacting on my RAG week preparations Dr. Rita Levi- Montalcini- Nobel Prize Recipient for her work on neurobiology. Dr. Montalcini also carried out research in conjunction with the National MS Society on identifying proteins that help nerve cells grow and stay healthy. The pride and sense of achievement and empowerment when I handed in my own Masters Research Dissertation on ‘Parent’s Experiences of a Multiple Sclerosis Diagnosis in their young adult sons/daughters’.  Science can no longer be considered a male-dominated area; women and girls have always had a critical role in scientific research and development. And continue to do so.   The United Nations 2030 Agenda for Sustainable Development focuses on the importance of science, empowerment and gender equality to achieve their identified goals. Given that less than 30% of researchers worldwide are women and in tandem with the UN’s goals for sustainable development, The United Nations General Assembly declared February 11th as the International Day of Women and Girls in Science.  Women are more at risk of developing Multiple Sclerosis in comparison to our male counterparts. Given this female dominance, it seems only right to give credit to some of the women and girls who have contributed to recent scientific research and development in the field of MS.  Maria Howard, MD at Harvard Medical School (2018), focused her research on pregnancy and MS. Given the diagnosis of MS in women of childbearing age, her research examined annual pregnancy rates between women with and without MS and also studied medical insurance claims made in terms of complications which occurred post pregnancy. Her results were promising with an increase in women with MS becoming pregnant in comparison to a decrease in pregnancies among women without MS between 2006-2014. Medical claims relating to difficulties encountered post partum, i.e. birth complications, premature labours, were similar in statistics between women with and without MS.  Her research, in tandem with other studies, strengthens the understanding among women that pregnancy does not necessarily affect the long term clinical course of MS and can be done so successfully with the support and monitoring of health care professionals, new treatments and continued research.  The importance of early screening and recognition of cognitive impairments in people living with MS has been highlighted through the work of Dr Rosalind Kalb (2018). Her research has focused on the importance of establishing standard baseline assessments for cognition, appropriate treatments, increased awareness and education among healthcare professionals and stricter monitoring. This initial research by Dr Kalb on the importance of cognitive health and monitoring among people with MS has paved the way for future researchers to develop on this identified need and work on tools to address these issues Scientific Research in the field of MS is developing daily and women and girls are playing a more prominent role in their contribution to the field. There is an increase in female led research in the areas of drug therapy, complementary therapies for MS and an increase in the number of grants, funding and research scholarships awarded to females.  February 11th is one day to mark the role that women and girls play in the field of science, technology, engineering and mathematics. Let’s encourage, empower and support girls and women every other day of the year.  #WomenInScience #WomenInResearch Check out these resources for further reading on scientists mentioned in the piece: Maria Howard’s Research on Pregnancy ttp://n.neurology.org/content/91/17/e1559     United Nations Homepage on International day of Women and Girls in Science http://www.un.org/en/events/women-and-girls-in-science-day/ Female Scientists that have changed the world https://www.globalcitizen.org/en/content/17-top-female-scientists-who-have-changed-the-worl/ Research on Cognitive Impairment and Recommendations for MS https://journals.sagepub.com/doi/10.1177/1352458518803785  

    Author: Ciara O’Meara - 07 Feb 2019

  • Photo for article: Childhood MS

    Childhood MS

    This week, Sarah tells us her paediatric MS story. She is a child, she has MS and she has the support of her parents as they all deal with the challenges of this condition.  Hello my name is Sarah*. I am 15 years old and like every other teenager I love my phone, my music and my very amazing parents. But there is something that’s different about me- I have been battling with MS and I am going to tell you my paediatric MS story.  It started when I was 10 years old. At the time I loved playing with dolls and drawing pictures and dancing- a typical 10 year old. A neurologist diagnosed my MS while we were on holidays. I had lost the vision in one of my eyes. Even though the doctors on holidays had told my parents that I had MS and I needed to get home and onto medication, the doctors here in Ireland wouldn’t confirm that I had MS. They needed to see two lesions.  For a good few months after being at home I had lots of tests and I never really knew what was going on. Fatigue and brain fog and adapting to the loss and change of vision was the worst for me. I could barely keep up with school and friends and missed a lot of time due to my tiredness and other symptoms. At age 11 I had my second attack - I could barely walk. I was brought into hospital but there was no MRI scan to see what was going on. I had a few ups and downs for the next few years. My third and fourth attack happened at the bold age of 13! I had just gone into second year in school and was finding it very difficult. I struggled to get into school everyday and keep up. If I went out at the weekend I would need Monday off school. It was hard to keep up with other teenagers my age.  After getting through all of September in school, I fell sick again at the end of October. I got very bad headaches and I stared to lose vision in my right eye. I was taken into hospital with another IV drip of steroids. On the 12th of November I was diagnosed with MS in Ireland and I didn’t think much of it. All I was told was do not look it up on Google. My fourth attack I had while in hospital and I ended up in the intensive care unit. I don’t really remember much after that. I was weak and sick and very ill. I didn’t have much energy after being in hospital for many weeks but when I was released, it felt great to be home for Christmas. When I had fallen sick I lost a lot of friends; this was very hard. I felt alone and different. At age 13, I was put on medication. I had to inject three times a week into my thighs and stomach. It was one of the worst things that happened to me because all the side-effects were worse then the illness.  All of the people I know of and have met with MS are older, have their education done, some with very successful jobs and here’s me I haven’t even sat my Junior Cert! But I am up for a challenge. This year I have taken up some new hobbies that I am hoping to continue with. I like to create videos and vlogs on YouTube. I love to write and I will never ever stop loving music. There is no MS nurse support in Ireland for children with MS so I had to wait six months to see my neurologist before we could get the okay to go off the medication. As a child with MS I have very little support. I try to stay as positive with the help of my family. I am now 15 years old and keeping as healthy as I can be.  MS is hard- it has really opened my eyes to see that nobody’s perfect and illness can be invisible. MS is unpredictable and it makes me look at the world differently. I would like to help other children who find themselves in this situation. I hope one day that there will be an MS nurse for children so that kids like me don’t feel so alone.  Thanks for reading my paediatric MS story,  Sarah x *MS Ireland is protecting the identity of the writer; Sarah is not her real name.  Oscar Monkey is an organisation for children with MS http://www.mroscarmonkey.org/   Most people living with MS are diagnosed between the ages of 20 and 40. It is uncommon for children to be diagnosed with multiple sclerosis. However, today we share a blog from a guest writer who was diagnosed at the age of 10. At the moment there is no MS nurse service for children living with multiple sclerosis. MS Ireland are committed to advocating for better neurology services for people living with MS.  If you are a child with MS or a parent with a child with MS, please contact the MS Ireland information line on 1850 233 233 

    Author: Sarah - 04 Feb 2019

  • Photo for article:  Why I “Look So Good"

    Why I “Look So Good"

    This week Trevis Gleason deals with familiar, often unwelcome, phrases people with MS hear very often. Nearly everyone who has MS has heard “You don’t look sick” or “But you look so good….” Well, I’ll tell you why.  It’s well into the third week of January and I’m still hearing a lot of “Happy New Year” greetings.  It’s not because people are stuck in a rut or have forgotten that they’ve seen me about town. It’s the first time I’ve been seen by many in our close-knit community. I’ve had a tough go of it since just after Christmas. MS and MS-related setbacks have kept me mostly at home for the past several weeks. What I’ve been hearing alongside those New Year greetings has been the acknowledgement that I have been missing from the everyday life of the town. Many suppose that I’ve been away on holidays or traveling for work. I’ve come to realise that this is the flipside of the “You look so good” coin. We ‘look so good’, not because we are ‘good’ all the time; rather because we only get out when we are on the good side of the MS spectrum. Firstly, the broader public doesn’t see our invisible symptoms. They also don’t see the effort – oft Herculean – to get ourselves out the door and into the community. The people we meet also don’t realise that our interaction with them may be the only one we have for the whole day.  It’s not a full trip to the shops we’re making, we’re simply out to get milk before we must return for an anesthesia-like recovery nap. Then, as I’ve experienced this week, people just don’t realise that we’re not out all of the time. People who see us at work mightn’t know that the seven or eight hours we are with them are the only hours in the day when we aren’t wrecked beyond recognition.  That the anti-fatigue meds mask to the world the truth of what we felt like before the meds kicked in. Those loan-shark meds will be demanding heavy interest when they wear off in the evening. Finally, the world only sees us as looking good because that’s what they want to see. They’re not looking very hard if they don’t see than I’m not ‘okay’. I know this doesn’t fit for everyone out there. The truth, however, is that our world needs to see that everything is okay. Those who know us moderately well may have known us ‘before’ and it’s important that we’re fine because if something like MS happens to them, they need to feel like they’ll be fine too. Our disease makes people face their own frailties.  It’s the same reason cancer was whispered about, if it were ever talked about, in decades past.  People don’t want to know that it could happen to them… as a species, we get spooked very easily. Part of the reason people see us as they do is because of the face we put on for the world. There as many reasons we put on the “I’m fine” mask as there are people living with MS. We do it because we need to stay employed, because we don’t want our children/spouses/family/friends to worry, because we don’t want to admit to ourselves that it’s got as bad as it has.   That list could go on for pages… I can’t (or at least don’t) give my list to people who mention that I look good or ask if I’ve been away. I’d be a very off-putting bore were I to spout off all of the above information to the casual acquaintance! It’s one of the reasons the MS & Me blog and other places where we can be ourselves with others who simply get it are so important. We’re not always fine, well, okay, or even good… but that doesn’t stop us from trying to be those things. I just wish we’d all do that a little more for ourselves than only for those in our lives who need them from us. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning books, Chef Interrupted, and Dingle Dinners are in the shops now. Follow him via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 24 Jan 2019

  • Photo for article: MS & Me in 2019

    MS & Me in 2019

    This New Year, the MS and Me team will bring you more of the things you love as well as a few things you didn’t know you wanted. As we close the third week of 2019, it’s probably time to sweep “Happy New Year” away for another 11½ months. That said, we’d like to take this opportunity to let you know what you might expect from your MS blog this year. First, we wave a grateful goodbye to one of our original blog team, Helen. We wish her all the best as she continues on a career path she was able to take-up again in 2018. Her thoughtful posts, such as the very popular MS & the 2019 Budget, will be missed as much as her positive yet realistic outlook on living with multiple sclerosis. Good luck, Helen! The rest of the MS & Me blog team will look the same for the coming year with some additional guests. The blog itself (as well as the MS Ireland webpage), however, may look different by the end of the year. We are undertaking a long-awaited rework of the website and will take advantage of the opportunity to make the MS & Me blog easier to find, navigate, read and reply. We can’t say exactly when it will happen but, suffice it to say from the prototypes we’ve seen, when it does change, you’ll know! This year we’ve decided to expand on a popular feature we ran a couple of years back. Most months, beginning in February, we will have two bloggers – one man and one woman – co-write a piece on a topic which may have different takes depending on the person with MS’s sex. We’re calling the series “He said – She said”. Topics are set to include such hot buttons as dating, romance, having children after diagnosis, finances and more. We hope you enjoy and engage with our bloggers on these interesting topics viewed from different perspectives. We’re also going to delve into some of the “tough stuff” this year. We all grieve losses in this life. With MS we seem to have to go through some form of the grieving process every time we lose something else to the disease. We’ll have a series of blogs on the stages of grief for you this year as well. We’ll highlight some of the major MS events happening in Ireland and around the world as well as sharing our tips and thoughts of living your best life with this damnable disease along for the ride. The editorial team of MS & Me hope that you’ll enjoy the topics we’ve set out for the year. The cadre of bloggers you’ve come to read hope that you’ll continue to comment, share, and discuss the subjects with your family and friends. Knowledge is, after all, power. And the more of our allies who have the knowledge, the more power we as an MS community will have. Wishing you and your family the best of health. Cheers

    Author: Trevis Gleason - 17 Jan 2019

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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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