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

  • Photo for article: MS DMT Choices

    MS DMT Choices

    Where do you get your MS treatment information? This week in her first blog as part of the renewed MS and Me writing team, Joan Jordan tackles medication, DMTs, clinical trials and decision-making. Read on for a clear description of how Joan made her DMT decisions…. I was a bit late to board the DMT (Disease Modifying Therapy) train. Although I had experienced symptoms of MS since my early twenties, I did not actually get diagnosed until I was 36. About six months later, I signed up for a clinical trial. For a few years, I was not actually sure which medication/DMT I was on because it was a double-blinded trial. This means that neither I nor my doctor knew which of the two drugs I was taking was the placebo (dummy) and which one was active. I found the whole process of participating in a clinical trial fascinating and it inspired me to want to learn more about how medications are developed and monitored. While I was on the clinical trial, I experienced severe side effects. I felt like I was losing a day a week to “flu-like” symptoms. Can you imagine having the flu for one seventh of your life? That’s ten years of feeling dreadful if I reached the average life expectancy! I began to weigh up the advantages of taking medication for my MS at all. How did I know it was working? Were the “flu-like” symptoms worth not having relapses? I also felt terribly guilty about not being able to do my daily tasks like caring for my children or not being productive at work when I was experiencing the dreaded “flu-like” symptoms. I don’t regret taking part in the clinical trial. I feel it gave me a bit of time to get over the shock of my MS diagnosis and to get a clear picture of what treatment options were available to me. I also felt that I was contributing, in my own way, towards the process of getting new medication on the market for people living with MS. I learned what a Disease Modifying Therapy meant. DMTs are NOT a cure for MS but could reduce how many relapses I had and their severity. DMTs can also slow down the damage caused by relapsing MS that builds up over time. Because I did not respond well to the first DMT I took, I was then moved onto a second line therapy. I had to have a ‘wash-out’ period where the old medication left my system. During this time, I had my first major relapse. I guess I had the answer to the question about the “flu-like” symptoms being worth it. Choosing my next DMT was difficult and I would encourage anyone considering starting or changing, to do their homework and investigate which one would suit you and your lifestyle best. Don’t let yourself be rushed into a decision. At the end of the day it’s your health you are deciding about. How long would you take to choose a new car? I have much less side effects on the second DMT I tried. I know it’s working because I have no evidence of disease activity in my annual MRI. I make sure to read my patient information leaflet and get my bloods checked regularly to monitor how my liver is functioning. When considering a DMT it is vital to get your facts from a trusted source and make an informed decision with your neurologist.

    Author: Joan Jordan - 15 Mar 2018

  • Photo for article: International Women’s Day, Mother’s Day and MS

    International Women’s Day, Mother’s Day and MS

    This year International Women’s Day and Mother’s Day are the same week. In her blog today, Mary Deveraux lets us in on her thoughts for the occasions and reflects on her, and her family’s new experience of living with Primary Progressive MS.  Today, on International Women’s Day, we celebrate the impact females from our country and internationally have had on the world. I’d like us to also celebrate how damn amazing women with MS are and give you my experience of the past few years. I vividly remember saying to a friend two Christmases ago that I thought there was something going on with my body. Soon after, MS came crashing into my life and the lives of my husband, my children, my family, my friends and my work colleagues. As we’ve journeyed together, as much as I have changed I also I see how the people in my life have changed too. The experience has changed me to such an extent that there are times when I’m overwhelmed with self-pity, wallow in ‘this is only about me’ focusing on who I used to be. But it isn’t just about me, it is about Us. This Mother’s Day I’ll spend time enjoying time with family, reflecting on my life and the different roles I have. And then I’ll think about my MS and its progression. I compare myself to this time last year. I was working full time, I walked without an aid, I was driving my car and I loved walking the promenade on holidays. There are many activities I still do but now, there are limitations that I never imagined. MS has brought pain at an extraordinary level, cognitive/bladder/lung/mobility issues and overwhelming fatigue. My MS is Primary Progressive and it feels like I haven’t had a day’s break from it in six years. And if I’ve not had a break, my family hasn’t either. They’ve had to deal with a changed mother and wife, home life being different, changed plans. We all know how difficult it can be to deal with change when we want it, how much more so when it’s something we DON’t want! No matter how much I want them to look at me and see “my mother/my wife, a strong independent woman” I’m not like I was.  I am now more dependent on others. While I am grateful for the help of my family and friends and would be lost without them, I’m finding it really hard. Before all this, I was always the ‘go to’ person, the fixer, the do-er. These limitations are new and I’m doing what I can to get comfortable with the changes.  I have always been adamant that my children and my husband will not be my Carer (again back to changing roles). I want them to continue being children and my husband, my partner. I want to be their mother and his wife. Yes, down the line there will have to be changes made and I worry more than others about my future. But I am still a mother and someone’s wife. When I’m in a slump, I think how ‘this’ is not what anyone signed up to and I long to take away the fear and inject a great big dose of laughter back in. Yet, we are a powerful clan, we have ‘dug in’ by learning together about the changes this disease can bring to someone; we have ‘held on’ by continuing to love and support one another and seeing how well we’ve done, We, the Devereux/O’Connors are as brave as any group of Amazonians! This Week of Women, I started by taking back some power, remembering my own gifts and using the example of other women who overcame great obstacles. Being brave isn’t always about being the loudest or the fiercest. There are times when even talking can be too much for me!  Brave is saying every morning that today, I’ll try again. Today and on Mother’s Day I say to every woman with MS, you are brave and please, keep trying. 

    Author: Mary Devereux - 08 Mar 2018

  • Photo for article: It Is All In My Head

    It Is All In My Head

    Anxiety is a common symptom for people living with MS and can frequently be overlooked. This week, read Robert Joyce's first MS & Me blog addressing and dealing with anxiety. Anxiety can paralyse you; make you incapable of doing the simplest task. Something happens inside my head that turns me into someone else. For me, it has presented as a knot in my stomach. Twisting and turning, making the thought of eating unbearable and unthinkable. I can feel my hands shake and my headache goes into orbit. Nobody enjoys this and for people with MS that have emotional triggers that bring on a relapse, it has a secondary consequence. A few months ago I had uncertainty about my finances. My work had dried up and I couldn’t see how I was going to resolve my situation. I felt that the shifting sands that are normally associated with my MS had now strayed into my economic life. Sleeping was difficult and my gut was making itself a main player in the drama that is my life. I was transfixed. When I realised that this was happening, which did take a few days, I switched to a different person. Standing outside myself, I could see that I was in trouble and needed to take effective action to prevent this from taking a further turn into depression. Fortunately, over the years I have developed a technique that reboots my emotional state allowing me to start over. The first step is to write down what I am feeling. I find using a pen and paper much more effective than using my laptop. I think it is partly the physical act of taking the emotion in my head and placing it on a page that I can touch, turn and even crumple. Once I have my emotions on the page I then examine what is causing them. A narrative approach is best, as it causes you to really understand what is the cause of the emotions. Now I re-read what is on the page and objectively see which of these causes I can take action that can resolve the issue. You will find that some of these are beyond your direct control. If this is the case they need to be discarded. Thrown in the bin. There is nothing to be gained by obsessing on something over which you have no control. At this point you have, I hope, a list that you can take ownership of and that you can change positively. You might need to break these solutions into smaller, bite-sized, pieces that are achievable. These will be milestones. In my case, I had completed this exercise within a few days of the start of my anxiety attack. Since then I have been taking steps to fix my financial angst. Because I took control of the situation and I have achievable steps that I can see being completed, I no longer suffer from this stagnation. I was freed from its hold. Having a chronic illness has an impact on you physically and mentally. They can often overlap and when either, or both, change, your world becomes uncertain. This technique has, for me, helped me avoid falling into despair. In effect, liberation from my anxiety is "all in my head".

    Author: Robert Joyce - 01 Mar 2018

  • Photo for article: MS Bucket List

    MS Bucket List

    Do you have a bucket list? This week for her first blog, Rosie McCormack writes about hers and how she dealt with all the holes in her bucket list post-diagnosis.  About six months before the relapse that led to my diagnosis, I was out running and I suddenly became so aware of how lucky I was. The beauty in every single step, the ease of breath. It hit me how quickly it could all be snatched away. I realise now how eerie that premonition - of sorts- feels but that reminder to stay mindful stuck with me on every single run and walk after that. However, it wasn’t until I heard those three words on a sunny afternoon in mid-May that it really hit me how quickly my ever-expanding bucket list could be destroyed. So, only a few hours after receiving my MS diagnosis, I went home, laced up my runners and signed up for the half marathon I’d always talked myself out of…. Oh, and I ordered a pizza and ate A LOT of chocolate! I cherished the time spent training for that half marathon - it gave me the headspace I needed to come to terms with what MS might mean. “MS will not stop me doing the things I love,” was my daily mantra as I fought back against the disease, pounding the pavements as I went. But then it did exactly that.  Nine months after completing that beautiful half marathon, I found myself in need of a wheelchair, a stick and at the start of what has since become a life of chronic pain.  And yet, as I watched one bucket list wash away, another one formed and started to overflow with ideas. Even in the days I needed a wheelchair to leave the house and never saw myself without it, never mind managing a lap of the park without it, my bucket list was no less extensive. From deciding that the marathon I never got to do would be replaced by a skydive in 2018 (shhh don’t tell my mother!) and accepting the help of a wheelchair to enable me to continue seeing the world - with Alaska and it’s whales and wildlife coming up trumps - to deciding I would one day walk around my favourite park again (and I did!), getting a dog, getting married and choosing to enjoy and to really cherish the beauty of the everyday despite MS and chronic pain. In 2015, my bucket list involved a half marathon. In 2016 it involved just wanting to sit in the park and in 2017 it involved managing a single lap of that park. Because that’s the thing with MS, the bucket list regularly gets reset and that’s okay.  You see, each and everyone of us is far more resilient and amazing than we realise. So while MS may seem like a thousand bullet holes through the middle of your bucket list, it’s also the fuel for a far more powerful and beautiful one to come. So, believe in yourself, take a deep breath and get busy planning.  Further reading! Rosie has a personal blog where she writes about her life, running and keeping the bucket list overflowing! Check out 

    Author: Rosie McCormack - 22 Feb 2018

  • Photo for article: MS and Lent

    MS and Lent

    This week, Emma Rogan is reminiscing about mornings in a cold drafty boarding school in the Midlands. Read on for her take on the next forty days and forty nights. In my school days I got involved in the Christian Union, a group of young Christians in my school. I got seriously into my Bible and all things God-dy. Every morning, before everyone else in the school was awake and the bustle of hundreds of other children echoed through the drafty old building, I’d sit on the stairs doing Bible study.  When considering this piece on Lent, I thought back to those days, reading about the forty days and forty nights Jesus spent in the desert and trying to figure out what was it all about? To be honest, I was a little jealous that Jesus had ALL that time to himself! When I was reflecting on that story, I thought about being in a place without the company of others, without basic necessities among thorny prickly plants? For three days and nights, during a trip to India, myself and a friend went on a camel safari in the Thar Desert. Scorching in the day, the sun beat down on us and freezing in the night, we got tucked up in our sleeping mats.  But for people with MS there are always reminders of a desolate place- I’ve never been so alone than on the days and months after my MS diagnosis. The uncertainty, the devastation, the morbid thoughts of a life un-lived and then there was all the choices I had NO clue how to make. MS is my barren desert; that desert represents to me what life is like in the first few months and even years of life with MS. But I eventually walked out of that desert. There are still some thorny parts of me and one of them is distraction from myself.  I’m prone to sitting surrounded by books, gleefully sitting alone for hours, absorbed or turning on the radio first thing to get a dose of politics or sitting scrolling, scrolling, scrolling through my Twitter feed. Distraction and denial of what was going on in my ‘real’ life. My phone is always with me, I’m rarely uncontactable and there’s always a source of information (wanted or otherwise), close by. This is really useful for us if we want to be distracted from what really matters and I’ve been distracted from what really matters.  In my early life, I learned that Lent was a time to give things up (chocolate, sweets, my Granny’s butterfly buns!) but also a time to make some new habits like being kinder to my siblings or being more helpful. The habit of sitting in the quiet of the early morning is something I’ve returned to in recent years. The habit isn’t easy but the simple process has subtly helped me deal with issues in healthier ways. It helps me deal with vagaries of MS, the depression, the fatigue, the balance issues, the cognitive issues. There have been times when my belief system has been wrung out, left to crisp up in the pounding noise of MRI scanner or when my dignity flowed down the leg of my trousers as my damaged/very sensitive bladder emptied before I could even pretend to be near the facilities.  I protect my mornings because it is in this sacred space I connect with my inner strength and power. No matter what is going on in the day, how bad my MS is playing up, when things get too much, I can tap into that peace and strength. The morning time I spend on my own, meditating, reflecting on a piece of writing, has given me greater understanding of myself. I think this is where this Lent thing started. Someone had a great idea to get away from it all, to find peace and to listen to their inner power. For the next forty days, I’ll go with doing something every day that makes my or someone else life, a little bit better. “There is guidance for each of us, and by lowly listening we shall hear the right word... . Place yourself in the middle of the stream of power and wisdom which flows into your life. Then, without effort, you are impelled to truth and to perfect contentment.” Ralph Waldo Emerson.  Check out Emma’s blog or get chatting on Twitter

    Author: Emma Rogan - 15 Feb 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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