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

  • Photo for article: Young People

    Young People

    These days life as a young person is not without its difficulties. With the economic times we are in, life is hard. Careers are more difficult to embark upon, housing is harder to secure, education isn't as accessible as young people would like. These are issues that can affect people on every level, add a chronic illness on top of that and many people would think life is impossible. Well not the young MSers of today, I hope. While it can be difficult to live with a condition like MS, it doesn't stop anyone from achieving the same things as others, you might just have to go about it a different way. I have spoken to people with MS who have told me that once they received their diagnosis they decided to forget about certain things that they had hoped to achieve in life. The thing is, you can still reach the goals you had set for yourself, and you may just have to rethink how to get to that end point. Sometimes it is the journey you were not expecting to have to make, ends up being the most beneficial, the most memorable.   It can be difficult to accept a diagnosis, especially when you have so much life to live. In my experience, being diagnosed as I finished third level education felt as if I was being stopped before I could even get started in life. Looking at the long road ahead when you are a young person, it is hard to imagine life with an illness like MS. It can be a very difficult time and in my opinion there needs to be more of a focus on mental health at this point. A diagnosis like this can completely take you by surprise and there is no manual to show you how to deal with the feelings and emotions that come with it. Fellow MS and Me blogger Willeke recently posted a blog with contact details for various mental health services, which I think is a great resource to people who may be in need of support. Life goes on regardless of what obstacles come our way, and hard as it may be, accepting, adjusting and continuing is the way forward.   An issue I feel needs to be addressed is decision making regarding treatments, or whether to take a treatment at all. When I was diagnosed, I found myself reading through treatment options with no clue what I was looking at. It was extremely difficult to make a decision. I was coming from a background in art and had no frame for reference when making decisions like this. You can sometimes find yourself emerged in an ocean of scientific terms and medical jargon that is incomprehensible. It is a tough and often very frustrating time. There are a few pieces of advice I would offer anyone looking at treatments and trying to make a decision. First of all take your time. Remember that taking a treatment is a choice, and not everyone decides that treatment is the right option for them.  If you decide to go ahead with choosing a treatment then read the information you are given, read it critically. Write a list of any questions you have and then set about having them answered. Talk to your healthcare team, ask them questions. Research online, but try to avoid horror stories. Read, but bear in mind that ultimately the decision is yours, use your reading to inform your thinking but certainly don't go online looking for the answer. MS is different for everyone and there is no typical path MS follows, so in turn there is no particular 'one fits all' treatment. Be careful when sourcing information online, there are lots of people who like to share their horror stories; try not to engage in that. Use reliable sources, like society websites, online journals etc. Try not to read too much into things that may never happen to you. If any of you have more advice please feel free to comment. The space is yours and that is what community is all about. We embrace readers using this space to interact and share. There are also plenty of supportive and helpful online resources.  I found shift.ms extremely helpful as an online support network. For those of you who are not familiar with it, shift.ms is a social media website for young people with MS. For me it was my first real connection with the online MS community. Something I greatly admire about shift.ms users is their knowledge base. Users can post / ask questions and other users will respond, interact and answer. It is community-regulated in a way, as users pick up on false information and tend to be quick to set each other in the right direction again. It is important to know you are not alone, and websites like shift.ms provide a safe online environment where MSers can reach out to each other. Information and experience is shared to help strengthen the community, users actively contribute to discussions and empower each other. I would strongly advise those of you who have not come across it to give it a look. Do any of you have other online resources you find helpful? Remember that life is bigger than MS, you are capable of so much and you should not let anything, even something like MS stand in your way. Some things might be harder but it does not mean they are impossible. You should not let a diagnosis define you. You are so much more than someone with MS. It is a very small part of your life; you are the one in the driving seat. 

    Author: Aoife Kirwan - 27 Aug 2015

  • Photo for article: The Early Signs

    The Early Signs

    Hindsight is a wonderful thing. Not sure who said that, but they knew their stuff. Looking back, I can now see that I had MS symptoms long before I was diagnosed. Lots of things that I couldn’t quite put my finger on, which niggled away at my thoughts and feelings.  I think I can trace it back to when I was a teenager. In the midst of questionable hair and clothing choices (purple hair mascara and Charlie Red perfume anyone?) I had some eye problems that my GP and optician couldn’t really give me answers for. There was nothing “in” my eye, but I could see shapes and squiggles floating across my vision. I’ve had this for almost 20 years now and while it isn’t a definite MS symptom, a quick browse of other MS forums show that they can be pretty common. At the time, it was just one of those things, and I had bigger things to worry about like my Leaving Cert (and where I was going out after I’d finished my Leaving Cert). My mum tells me that I also complained of pins and needles on occasion, which I don’t really remember, but that’s one of my daily symptoms now.  In my early 20s my balance was shocking. I couldn’t walk down a flight of stairs without hugging the wall. I would go to walk through an open door, and veer straight into the door frame. I took some epic stumbles which were blamed on stupid shoes and wonky pavements. The days I tripped over flat ground in runners, I didn’t always tell people about. By the time I was 25 or 26 I had some symptoms in my right arm. I had numbness for no apparent reason. I was living in Dublin, so had a different GP. I don’t think he really understood what I was trying to explain to him- to be fair, neither did I- but he dutifully packed me off for an MRI. Which showed up nothing? I now take that as a good sign, as I like to think I didn’t have any brain lesions back then. Or if I did, they were teeny. At the time, though, I was left none the wiser, my arm cleared up by itself, and it was just another one of those things. Fast forward to 2010, when I was 29 and the whole lot came tumbling down on me. I was so unwell, but I didn’t notice it at the time. I gradually got more and more tired and stiff and awkward when I was walking. I spent most of the time off work asleep, and dragged myself out of bed every morning. I cried a lot. I wasn’t sure why I was crying, or why I felt so awful, but I knew there was something wrong with me. Around April, the symptoms upped their game, and attacked me from all angles. It started with a numb head. Well, on one side. Then I had a numb face, and shoulder. Eventually it spread to my right hand. I couldn’t feel my hand or head, so washing my hair was a disaster. Thankfully the purple hair mascara days had ended.  By this stage I had a new GP. I honestly think that without her experience, I could still be undiagnosed. I went in to her 3 times over the space of a few weeks. Visit 1 was for my numb head and face, and I was given anti-inflammatories. I was allergic to them, and got an itchy head. You know the head I couldn’t feel properly? I scratched it with my (unfeeling) hand until I made myself bleed. The next visit was when my hand got so bad, I couldn’t write my name. We changed tack, and thinking I had probably trapped a nerve somehow, she changed the medication I was on. On my final visit to see her, as a follow up to the numbness, I told her about the “funny new symptom” I had for her. When I nodded my head, I was getting tingly shocks down my neck, back, and legs, right down to my toes. I now know that this has a name (L'hermitte's sign) and that this was the final piece in the jigsaw for my GP. She straight away took me off all the medications she’d given me, in case they were masking other symptoms, and sent me to a Neurologist. Once I got to the stage of seeing the Neurologist, my diagnosis was pretty quick. I had blood tests and scans and was taken in as an in-patient to go on a steroid IV drip for 5 days. The steroids were to counter the relapse I was having. I figured I had been having smaller relapses or episodes for a few years. After I got home, I had more steroids to take for a couple of weeks. They made me sick as a dog! But they worked, and gradually I got better.  At the time I was too poorly to think very much about my diagnosis, but afterwards I started to digest the information I’d been given. To be honest, I am probably still digesting it now. It has been hard at times, and nobody knows what the next few years will bring, but I am glad I was diagnosed when I was, at a time when I could deal with it. As a teenager or in college I think it would have stopped me in my tracks. Instead, it has given me opportunities that I never would have imagined possible, and introduced me to some of the most interesting and entertaining people I know, and for that I am very thankful.

    Author: Niamh McCarron - 20 Aug 2015

  • Photo for article:  All the World’s a (MS) Stage

    All the World’s a (MS) Stage

    *An introduction to our upcoming series discussing many of the stages of life with multiple sclerosis* “All the world's a stage,” wrote the Bard, himself, “And all the men and women merely players; They have their exits and their entrances, And one man in his time plays many parts…” Now, I’m no poet but I think that each of us can say that multiple sclerosis has made its entrances and exits on and at the different stages of our lives. MS, the people living with it and how it affects us are all different depending on the time, place and circumstance of our lives as well as on the symptoms brought by the disease. Once considered a “prime of life” disease, new diagnostics coupled with patient and physician awareness of MS have made it something with which a younger cohort of friends are now having to cope. For this reason I am quite very excited to act as Chorus and enter our darkened auditorium and set the stage for you by announcing an important, informative – and likely entertaining – series of blog essays under the broad header of “The Stages of Multiple Sclerosis” Over the next two and a half months our talented and passionate bloggers will introduce topics from early signs and pre-diagnosis (by our Donegal blogger Niamh McCarron), being diagnosed and living with MS as a younger person (by 2014 MS Person of the Year Aoife Kirwan) and sibling relationships to -and with- MS (by Lucina Russell whose brother also lives with MS); through fertility and pregnancy with MS (by new mammy, Emma Rogan) and parenting (by mother of two, Joan Jordan).  Willeke Van Eeckhoutte, who has lived with MS for 15 years, will write about aging with multiple sclerosis; travel enthusiast, Declan Groeger, will tell us how hobbies and activities and passions can change and be adapted and we’ll wrap the series with nursing and assistive care and MS by our resident librarian, Helen Farrell. All-in-all, I’d say that we’ve an interesting line up for you in the coming weeks and months. We welcome and even encourage you to comment on these blogs and to share them with others in your life so they, too, may understand life with MS a little bit better. To paraphrase the poet and playwright whose words with which I opened;   Admit me Chorus to this MS story; Your humble patience pray, in my awkward prologue Gently to read, kindly to judge, our serial blog. Wishing you and your family the best of health. Cheers Trevis You can also follow us via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 13 Aug 2015

  • Photo for article: Benefits of Engaging with Other MSers

    Benefits of Engaging with Other MSers

    Recently I've had a few young people who have been recently diagnosed with MS get in touch. I'm always happy to hear from people, because on of the most common themes I see emerge when these young people start to open up is the isolation they feel post-diagnosis. It's hard to be the only one in your family, your friends, and your peer group that has MS. It sometimes feels like nobody understands.   I can't recommend engaging with others in the MS community highly enough. I was diagnosed in my early twenties. I will admit, although I accepted my condition, I did not want any interaction with MS 'groups'. I felt that if I went to an event, to a meet up or coffee morning, that I would be faced with a visual reality of what was in store for me in the future.   Diagnosis can be a very scary time and that 'newly' diagnosed stage is sometimes hard to cope with. I felt I did not want to walk into a room of people who were more affected by MS than me. As scary as things were, they were in my head and I had no visual confrontation with the disease as such. I knew the possibilities and I didn't wish to have anymore to do with what could happen. I guess I was always afraid that going to meet other people with MS would be too real. It would bring it all home, and instead of the blissful ignorance I had, I would have to face the facts.    Initially, I wanted to keep things in, I didn't feel like anyone else would understand how I felt. None of my friends had MS and despite their best efforts they would never see things like I did.  After sometime I did feel it would be beneficial to meet other people with MS. Human connection is hugely important and there is great comfort in knowing that there are other people in situations similar to your own. So as I spoke to more people I began to crave more and more. I met more people, of various ages, with various symptoms and levels of ability, and I saw that it's not only the people who are doing well and keeping symptoms at bay who are strong, it is also the people who are carrying on and living life regardless of the symptoms they may be experiencing on a daily basis. They have so much more to cope with and they do it and carry on with their lives too.  It occurred to me that I was the weak one, the one who didn't want to interact with these amazing people, out of fear, fear of what the future has in store. I can honestly say that if I follow the same disease path as many of the people I have met, and deal with it as gracefully as they have, then I will be incredibly proud of myself. Everyone has a different disease path, but we are all on the same journey. Sharing that journey with others makes it so much easier. You can learn so much from a seasoned traveller.  I think if I was living with MS in isolation from other MSers I would still be scared of the future. But confronting that fear has only made me stronger. I want to keep myself as well as possible, and listening to the advice of others (and separating the good from bad advice) has really only served me well. I think it is crucial for young people to engage with other young people too. We are all in a similar stage of life, so themes are relevant to us all. We can share with, learn from and help each other. There is strength in unity and what I would like is increased visibility of younger people with MS. When the average person thinks of someone with MS, I think they immediately picture a 40/50 something year old, but in reality there are lots of young people who live with MS and by increasing the visibility of that group, we can do so much. By acting as a united group we can strive to achieve change where WE need it, support with education and training, family planning, employment, mental health services, insurance, to name but a few issues. How can we expect to have services for younger people if we don't make it obvious that we exist? We need to clearly state what it is we need. What do you think we need to try focus on changing? What would benefit you as a person living with MS? We are all strong, none of us are better than any others. We all have our strengths and weaknesses and we can learn from each other. My advice is to engage with others on a level you are comfortable with. We don't need to dwell or focus on the negative possibilities. We just need to support each other, and that support happens so organically when you engage with others.   Further reading Atlas of MS

    Author: Aoife Kirwan - 23 Jul 2015

  • Photo for article: Individual Health Identifiers

    Individual Health Identifiers

    I don’t remember too much from the day I got diagnosed in the Lourdes Hospital but I do recall the doctor telling me that I would have to learn to manage my MS. Back then, I didn’t even know what a sclerosis was but I suppose that over the years, I have learned to get along with my lesions- always conscious of the fact that I am at their mercy. I try to get the best out of a bad situation and keep on top of current treatments, research and therapies. For some reason, I assumed that my illness would in turn be managed by the doctor who diagnosed me. I expected that in 2010, my illness had been registered in a massive patient database providing an online health record for every Irish citizen. I figured that the numbers would then be crunched to provide data to help plan for research, pharmaceutical and services departments. This data would be accessed when I went for any type of medical treatment so that my health status was clear to all stakeholders. Think of Big Brother for ill health…. I was shocked to find out that no such register exists! As it stands today, we do not know how many MSers there are in Ireland. There is no official HSE record. The estimate is around 8,000 but we just don’t have an exact figure. I can imagine that all kinds of data could be extracted if the information was centrally stored and analysed. The HSE does have a plan to introduce Individual Health Identifiers in its 2015 Health Priorities and the project is on track to be delivered this summer - http://www.ehealthireland.ie.  The question is “why is this only being done now?” There are probably all kinds of financial, technical and data protection issues involved but as a patient, I am more concerned that the wheels get greased and that an Irish patient register gets up and running. If Irish Water got our personal details so quickly- despite massive public disapproval- why can’t the recording of health data be expedited in the same way?  I’m just sayin’!

    Author: Joan Jordan - 17 Jul 2015

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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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