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

  • Photo for article: Kiss Goodbye To MS

    Kiss Goodbye To MS

    Have you joined the Kiss Goodbye to MS squad? This week Grace Kavanagh tells us why she joins in with thousands of others for the massive global campaign. It’s all about the Kiss! MS is a difficult disease to live with. It's so unpredictable and is often described as an “invisible” illness because so many symptoms are felt by the person but not seen by others. As a result, having MS can be really isolating. We can’t always take part in activities or outings because just getting out of bed is a herculean effort. We’re not rude or antisocial - just exhausted, struggling or in pain. This isn’t the same for everyone but that sense of isolation can hit any of us. When I was diagnosed with MS 12 years ago there was no talk of a cure and with just four disease modifying therapies (DMTs). We’ve come a long way since then with twelve (if not more) treatment options now available. There are advances in biotechnology being made every day. While there is no cure, I like to think we’re getting closer. I see it as my job to keep myself functioning and as well as possible until we do. That is what Kiss Goodbye To MS is all about. It is a fun, global campaign to raise awareness and funds for vital research and to support people living with MS. The funds raised make a huge difference to people like me living with MS. My weekly yoga class means I have a reason to get out and mix with others and don’t have to spend the day talking to my cat! And it’s good exercise! A person’s tolerance to a drug and its efficacy can change over time which make advances and new treatments so important. Personally, I have worked my way through four of the drug options on my MS journey. I’m doing okay at the moment but am always on the lookout for what would be of greater benefit to me. Any new developments from MS research could have huge impact on my life and the lives of thousands of others. MS research is not restricted to pharmaceutical treatment. MS Ireland also funds research projects into living well with MS including projects around physiotherapy and mindfulness being carried out in University of Limerick. I’m a believer in physiotherapy and mindfulness - they help keep me moving, flexible and successfully get through every day So how can you get involved? You can decide how much time or effort you can spare- know that everything you do get involved with helps and will make a huge difference to the MS community. You can wear red, take a selfie to share on social media using hashtag #kissgoodbyetoms, do a dare or organise an event to raise funds. Visit MS Ireland’s campaign website – www.kissgoodbyetoms.ie for more information on the campaign and current areas of research funding. You can even text KISS to 50300 to donate €4 - how easy is that!? It is really humbling to see so many people from across the world joining together to help in the fight against MS. For such an illness that can be so isolating, that means so much to all of us with MS! Above all the Kiss campaign stands for hope. We are better together and together we can find a cure. 

    Author: Grace Kavanagh - 24 May 2018

  • Photo for article: Why MS Is My Secret

    Why MS Is My Secret

    This week the MS and Me AnonMS blogger, a health care professional, shares with us an insider’s perspective on disclosure. Does disclosing MS status lead to the condition overshadowing all other aspects of a person’s life and reduce them down to a diagnosis? There are times when I am tempted to mention it. Particularly when I’m having a bad day and someone in work is complaining about their back pain or their thyroid issues or their respiratory problem. I can have a brief fleeting fantasy of myself smiling and nodding and chipping in with “Well, with my multiple sclerosis…”. That’s as far as the fantasy ever goes though. Because after that bombshell I know there would be shocked faces, stammered words and the overwhelming sense of panic that I’ve dropped the explosive and can’t undo the damage. It’s not that I feel their health issues are not serious or not problematic. They just all seem so much safer and palatable to discuss over morning coffee. So, I make sympathetic noises and say nothing. I work in healthcare, so I can see the health system from both perspectives. My colleagues are wonderful, kind and caring people but the problem with working in healthcare is that our knowledge of a condition can be best understood by that sad case study or this complex patient. Our vision is often distorted by our circumstances. We tend to see people at their lowest point and on their worst day, when staying at home isn’t an option and forget about the many other days when they were coping and managing just fine. Worst case scenarios tend to overshadow the “living well” in our minds. This is problematic for me because, were I to tell anyone in work about my diagnosis, I know their understanding would be coloured by a previous interaction or difficult discharge that may have absolutely no bearing on my circumstances. Yet this will be their most memorable reference and example of MS. I know they would paint my outlook with the same brush whether they realise it or not. People with MS are still very misunderstood and pitied. It can have the ability to overshadow all other aspects of a person’s life and reduce them down to a diagnosis. I have seen people rebranded as sad anecdotes and cautionary tales. I don’t want that to happen to me. I am generally not someone who wallows in self-pity or spends time wishing that things could have turned out differently. My diagnosis gave me the drive to do the things and see the places I had been putting off. The next relapse could be closer than I think and I don’t want to look back and wish “if only I had…”. If people find out I have MS I want them to be surprised. I want them to have had the opportunity to see me, without the distraction of MS, as someone who achieved a lot and was a good colleague or friend. I want people to see me without those two letters blocking their view.

    Author: MS & Me AnonMS Blogger - 17 May 2018

  • Photo for article: What They Just Don't Understand

    What They Just Don't Understand

    This week, in a letter to her nearest and dearest, Willeke Van Eeckhoutte puts down in words how she really feels. “What do you want me to say?” Dearly Beloved, What do you want me to say? What is it you don’t understand? When someone like you says, "Well, what do you want me to say?" during moments when I feel less than cheerful, it sounds like a rejection. Not just of me, but of your understanding of what I, and we, have been going through for the past 13 years. After all this time, all the wisdom we have gained, we could be the writers of the largest MS encyclopaedia! Instead, being asked that question sounds like a betrayal. It’s like you’re using the illness I never asked for as a slur against me. The truth is, I could write you a hundred different letters and a thousand expert explanations about my symptoms and my thoughts on all those shiny plaques on my MRI images. Nonetheless, I often think, "How can you possibly relate to my life if you don’t have MS?But, with all its intricate, demeaning and unpredictable symptoms, how could I ever expect you to?" The answer is, you honestly cannot know what it is to be me, and this is not my rejection of you, far from it. But, I do need to plea for your insight, patience and empathy. Just as I am struggling to find the words in this letter, MS is an ever-changing plotline that forces me to reinvent my life’s storyline as we speak.  When I snap at you, I don’t mean to. More to the point, you were probably not the problem. Like when slamming a door in anger, the doorframe, the wall or the house aren’t ever reasons for the action.  Sometimes I am absolutely worn out, totally exhausted because of my illness. This exhaustion feels even more pronounced when people express how they don’t understand me. I’m tired of the illness that has me acting in ways I normally wouldn’t.  I carry an imperfect brain because of illness with a fickle revolving-door manifestation. It causes me to feel claustrophobic within myself. I know that keeping up with an ever-changing illness is as challenging for you as it is for me. I also know that there are times when you’d rather be somewhere else instead of being near me. What I want you to get is I don’t wallow in self-pity nor do I jump up and down in elation because I was diagnosed with this obnoxious illness. MS has impacted so many aspects of my life, it is part of what makes my life what it is today. Makes me how I am today. Flawed? Yes. Fickle? Perhaps. Happy? I sure am! Hopeful that you would understand me? Absolutely.  What I ask for is simple but it isn’t easy. You are part of my walk through life and am glad to have you with me. When you feel exasperated by what I say or do, please step into my shoes with me for one minute and we can work out what’s really going on. Lots of love, Willeke  Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me 

    Author: Willeke Van Eeckhoutte - 10 May 2018

  • Photo for article: Living with Primary Progressive MS

    Living with Primary Progressive MS

    This week Mary Deveraux shares with us her experience of Primary Progressive MS. Akin to the big stories we’re all familiar with, PPMS brings unexpected twists to life no-one ever expects.  Living with Primary Progressive MS is like starting a new book, with a difference. Each and every page you turn brings an unexpected ‘twist in the tale’. As the days add up, I realise my experience is like an epic story akin to the Iliad. It consumes my life and the lives of all that surrounds me as we grapple with the unexpected (far too regularly). The motto changed in my home from “will we” to “if your up to it”. Once there was a name put on it, Primary Progressive Multiple Sclerosis (PPMS) it was as though the floodgates opened. Every sort of symptom came in my door, wrapped around and in me and never left my body. The PPMS brings new ones with it too. From incredible pain to mind blowing fatigue that makes me want to become one with the sofa! PPMS is exhausting and the mental strain that makes it even more so.  The forgetfullness, the difficulty in making decisions, the doubting myself and a pervading send of fear of doing something wrong that would effect others and making mistakes. In my line of work I couldn't afford mistakes. I would never have forgiven myself. After a difficult six years of traumatic change, I stopped running away from my illness. I am learning to accept that the work that I had dedicated my life to had to go. Then there was the personal guilt and shame of letting THAT go. Because of my symptoms, I failed an off-the-road test and my driving licence was taken away.  Accepting all these changes is hard. Readers would know from my previous piece that I was always ‘The Fixer’. Now I can’t fix myself. Yet, as time is going on I am learning that I can help myself. I have had to get out and make new friends and do things at 50 I never thought I would be doing. I accept all the help that’s offered with the grace and kindness with which it is offered. I now need a cane to walk and know I might need a mobility scooter on holidays to make sure I make the most of my holiday time. That’s okay.  These changes (the cane, the mobility scooter, asking for help, being open about my vulnerability) don’t come easy nor over night. But this process of asking for help and accepting it absolutely is making my life easier and this transition more tolerable. Living with Primary Progressive MS is never going to be easy for me; it doesn’t give me a break or a holiday. It has broken my heart. But as I accept the changes, that I have more limitations, I still pick up my book. Each day I get to turn the pages and through all the heartache, I’m determined to find the hero and the great things in my story. Today, may we all remember WE ARE the heroes in our story.  

    Author: Mary Deveraux - 04 May 2018

  • Photo for article: When The Nurse Becomes The Patient

    When The Nurse Becomes The Patient

    This week we welcome new writer Ciara O’Meara to MS and Me. Read on for her unique perspective on the MS patient experience.  A 23 year old, 4th year student nurse is a dangerous thing. You know too much but not enough. You’re an integral part of the ward but not yet qualified. You’re still a student but yet expected to be a responsible adult. Throw a diagnosis of MS into the mix and it’s chaos! When the general consultant said, “Ciara, we think it’s MS”, my initial reaction was ‘They are going to keep me in now for tests and I am going to miss the nurses ball’. When my neurologist gave me the official diagnosis, I knew it before he did. I had read the MRI report upside down on the table and got a good peripheral read of the medical notes all within the time it took him to wash his hands and grab a biro. When I told one of my closest nursing colleagues about my diagnosis she said, “Right, will we go for a pint?” Typical Nurses one might say. But that is exactly what I needed; I needed to be a typical nurse. I needed to focus on the end goal, Graduation and Registration. I had a ward that needed me, patients that needed me and I needed to get through this for me.  Trying to find the balance between ‘nurse’ and ‘patient’ is not easy. I am quick to give advice to others, but slow to take my own. I passionately care for others, but often neglect to care for myself.  I find it difficult to be the vulnerable patient, sitting on the chair in the Tysabri clinic, watching the nurses’ draw up the infusion, insert the cannula and start the pump. That should be me. I was trained to look after Ciara as The Nurse; I wasn’t equipped to look after Ciara as The Patient.  However with that said, I wouldn’t change being a nurse for anything. Nursing gave me experience, knowledge and patience to deal with, and accept, my diagnosis. It gave me access to evidence based scientific research, access to multi-disciplinary team members and access to resources and supports that I might have otherwise been unaware of. Nursing has given me confidence to deal with challenging situations and to question care-delivery and practice. And as much as nursing has given me, MS has now given me that extra advantage, that little edge over others. MS has made me a better nurse. I won’t ever know why MS decided to land at my front door but its arrival has produced a more caring, empathetic, appreciative, sensitive and inquisitive nurse.  I now just need to ensure that this nurse starts to prioritise and care for her most important patient… Me!

    Author: Ciara O Meara - 26 Apr 2018

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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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