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

  • Photo for article: The MS Grieving Process: Denial and Isolation

    The MS Grieving Process: Denial and Isolation

    This week Willeke van Eeckhoutte delves into the universal experience of grieving after being diagnosed with multiple sclerosis. From the ever-popular denial to the stories we tell ourselves and to being present in your daily life, read on to discover how she found her way forward….   Nothing is as numbing to the soul as being diagnosed with an incurable illness like MS. When that illness is also progressive and affects your brain, spinal cord and optic nerves, you can safely call it a double whammy...and a bit! In 2002 I moved to Ireland, the country of my dreams. At work, strong friendships were formed from the get-go and family members visited regularly. I was also studying for a degree in Psychology and when I had time to spare, I travelled around Ireland during weekends and holidays. Life was hectic and good. Fast-forward to 2005. Five months after experiencing my first MS symptoms, I stepped into A&E with excruciating facial pain and fatigue. These symptoms invariably marred my days- there was no number a pain severity scale. My diagnosis followed soon after... it still feels as if it happened yesterday. I remember what I wore, what I said, what I forgot to ask... as well as staring in my neurologist’s eyes looking for reassurance. I also remember standing in the hallway outside the MS clinic, texting everyone, saying “I am OK! It’s MS but I am OK!”  Denial had arrived. “The illness is mine, but the tragedy is theirs.” Third Star, 2010 Denial set in almost instantly. The visceral impact I thought would happen during the MS clinic, didn’t. When my neurologist said I would have to change my lifestyle, I thought, “What an odd thing to say to someone who just changed her lifestyle when I moved to Ireland.”  “No can do!” I said afterwards to the friend who went to the hospital with me—and who I conveniently forgot to take into the consultation room with me. She later dragged me off to a fancy restaurant because in her own words, “I was so in denial!”  Not facing up to the truth as a coping mechanism prevented me from going off the rails that day, so much so I was talking about the ‘D-thing’ in quite a matter-of-fact way. Family and friends were asking if I was OK as the lack of tears puzzled them. I asked them in return if they were OK because they seemed to make so much more of the diagnosis than I was.  When I eventually went to bed that night, my thoughts were fragmented and skewed. I was happier knowing what was causing the maddening facial pain and relentless fatigue rather than being sad about the difficult journey ahead of me. I didn’t see the need to quit my job nor the urgency to throw my life around again. This was a stance I eventually had to review 4.5 years post-diagnosis. This was diagnosis-denial 1-on-1 For about five weeks, I said “I’m fine!” Non-acceptance would intervene when new symptoms arrived and trigeminal neuralgia went up a notch. It stopped me from thinking about all the implications of such a harsh diagnosis.  Before denial dissipated, I still had a litany of questions that required answers I couldn’t find.  I could be forgiven for not being even remotely aware that my body was in a slow process of relinquishing power and control?  Did those glimmering lesions on my brain show up one day fully formed?  Why, after just 2.5 years, did MS have to attack the life I had dreamt of?  Please don’t tell me family and friends will walk out of my life because I’m “just not the same anymore”? Have I just lost the best part about myself? All the above went unanswered because the time and effort spent on finding the right answers by being negative were more energy-sapping than being positive was.  Interferon side effects helped drip-feed reality into my consciousness. Its numbing effect lost its potency, but I finally understood that being in denial is the opposite of having hope. Hope was where I was headed and hope is where I live to this day.  Check out Willeke’s blog Ireland, MS and Me  

    Author: Willeke van Eeckhoutte - 21 Mar 2019

  • Photo for article: He Said / She Said MS

    He Said / She Said MS

    This week we get to share in a conversation between two MS and Me bloggers, Fergal Hughes and Willeke van Eeckhoutte. Read on for their personal take on some of the issues MS brings to their lives.  Life. It's tough. Life with MS is tougher than life without MS of course. That said, I doubt that any of us MSers would say our life is tougher than someone else’s...anyone else's, MS or no MS! “Walk a mile in someone else’s shoes” and all that. Still, MS does have more than its fair share of negative points and it gives us more than our fair share of ‘bad days’. With our new friendship, we (Willeke van Eeckhoutte and Fergal Hughes) find we enjoy convincing each other that it’s not all bad and that every cloud has a silver lining. REDUCED CAPABILITIES WvE: Life with MS put a big exclamation mark in my life... and I wasn’t having it! No more hillwalking or thinking of chasing cows in the middle of nowhere only to realise there is a bull just 150 metres ahead of me! FH: Even though some capabilities may have been taken from you, you just need to remind yourself that you can still do what you can do and, well, you'll keep doing it. The goalposts may have been moved – personally, what I now consider to be a major achievement  is certainly different to what it was some years ago – but I’m pretty sure you have the confidence and strength to deal with it and adapt. CONCENTRATION FH: Me, I work as a software engineer. This is both brilliant and not so brilliant. My job requires that I sit down for 8 hours a day. This means there’s minimal call for me to be physical but it also means I get minimum chance to be mobile or to work the muscles. Also, my mind has to constantly be in tip-top condition … and with MS that can be a struggle. WvE: My experience is that lately, it seems that my concentration and memory have gone to tatters. My prospective memory especially has led to awkward situations because I agree to do certain tasks, but then I can’t remember that I had to remember to perform that task.  The intention is there and unless I sticky-tape notes to every wall of the house, I often find myself apologising. FATIGUE WvE: This is no joke. It takes 100% true grit trying to stay awake for five minutes once I put my head on my pillow. Can you imagine having a relationship like this? I have to watch episodes of my favourite shows five or six times to see the whole 45-minute program! What’s your secret, Fergal? FH: Combatting fatigue is no easy matter, Willeke. I’ve found that a regular schedule for going to bed at a particular time every evening and getting up at roughly the same time every morning helps me … as long as I stick to it! As long as I give my body and mind the best possible chance, the closer to a ‘normal life’ I get. MY FUTURE FH: I'm a worrier. It's alright saying I live in the 'here and now’ but shouldn't I at least consider the worst possible future … so I'll be prepared for it if it did happen. WvE: As a great philosopher once said, ‘Don’t worry, be happy’. Kidding. But hey, always remember, you can’t control the future. You can maybe have an effect on today and this week but let the long-term future take care of itself. A BURDEN ON OTHERS WvE: I feel shut out when people tell me I don’t need to worry about certain news, that I have enough on my mind already. I tell them again and again that they don’t need to worry about what I live with, but I cannot convince them. Backup or tips needed here, Fergal! FH: No one wants to feel like a burden on family or friends. But come on, Willeke, we can’t control how others feel.  And anyway, we might be wrong! I KNEW I WAS DEPRESSED BUT WAS AFRAID OF REACHING OUT FH: I waited too long to get help and felt there wasn’t much support available in my community. When I eventually found a therapist, it was expensive enough for the amount of time I was given. WvE: I’m sorry to hear that Fergal. People with MS need more readily available access to mental health services. Once I opened up, I felt relief knowing I was not the only one. Therapists might have group sessions also for ‘people with chronic illnesses’. 

    Author: Fergal Hughes and Willeke van Eeckhoutte - 14 Mar 2019

  • Photo for article: Brain Awareness Week

    Brain Awareness Week

    Next week is Brain Awareness Week (11th-17th March). This is a global campaign to raise awareness of brain research & all things neurological. Today, Joan Jordan speaks about her experience when first diagnosed with MS & how she’ll be joining the ‘I Love my Brain’ campaign.   “The human brain weighs 3 pounds (or about 2% of a human's body weight). The blood vessels that are present in the brain are almost 160,000 kilometres in length. There are 100 billion neurons present in the brain. The human brain will grow three times its size in the first year of life. It continues to grow until you’re about 18 years old. It then gets smaller as we get older. This usually happens sometime after middle age.” * Imagine, all this is going on inside my head- on top of Multiple Sclerosis! I suppose I had a bit of a falling out with my brain when I got diagnosed in 2010. Seeing those lesions on my MRI somehow made me feel that it was not pulling its 3 pounds. When I get my annual scan, I wait anxiously for the results and hope that my neurologist will say the four-letter word I want to hear- NEDA (No Evidence of Disease Activity).  It’s a stressful time. It’s hard to explain to loved ones how out of control I feel regarding the possibility of progression. I tend to keep it all in and silently obsess between my MRI and neurologist appointments. The only people I feel I can discuss my situation with are other people living with neurological conditions who get where I am coming from. I use support groups, trusted, private, online forums and websites for this. So far, the medication I take daily has halted the progression of my MS and I am very grateful that it is funded by the HSE High Tech Scheme.    What with now being middle aged, it’s about time I showed my brain some love. Love your Brain is an awareness campaign led by the Neurological Alliance of Ireland to coincide with National Brain Awareness Week March 11th to 17th 2019. The campaign aims to promote greater awareness and understanding of the brain and brain conditions as well as the need for more investment in services, research and prevention. Love Your Brain is supported by over twenty patient organisations and research groups which will be involved in organising events for Brain Awareness Week throughout Ireland.  A dedicated website www.Loveyourbrain.ie includes sections on each of the four elements of the awareness campaign: Understanding your Brain Keeping Your Brain Healthy Living with a Neurological Condition Promoting Brain Research The website features links to publications, information videos, partner logos and a calendar of events taking place nationwide. One part of the campaign is called “In their own word”. Five individuals will explain why they have chosen one word to sum up what it’s like for them to live with a neurological condition. These videos will feature on social media throughout Brain Awareness Week 2019. I have thought about the word I would choose to describe what it’s like to live with Multiple Sclerosis. The runners-up are “Challenging”, “Stressful”, “Frustrating” and “Unfair”. The award goes to “Unpredictable”. I really felt that I should select a positive word but being honest, I don’t want to paint MS as something I welcome in my life. It’s just there and there is nothing I can do to prevent that fact. Things I can do (apart from stopping obsessing!) are to watch my diet, be informed on reliable research, get regular exercise, and take care of my mental health. Things that everybody should do but sometimes are a bit harder when you live with a neurological condition, like MS. The unpredictability really challenges me. Because of past relapses, I fixate on what might happen and as a result, miss out on the joys of the present. This year, I want to find out more about what I can do in practical terms to maintain my brain health. I would really appreciate any suggestions on what works for you.  Last of all, I want to shout out to my 3 pounds and acknowledge all the amazing things it has done for me so far. I have taken my brain for granted in the past. There are things I can do to maintain its health and stay informed about my options. Please support the events taking place nationwide as part of Brain Awareness Week. You can also follow @nai_ireland on social media and use the hashtags, #loveyourbrain2019 and #brainawarenessweek.  *https://www.healthline.com/health/fun-facts-about-the-brain#1    

    Author: Joan Jordan - 07 Mar 2019

  • Photo for article: MS in the Media and Entertainment

    MS in the Media and Entertainment

    This week, Katie St Lawrence considers how MS is communicated. What is the impact of celebrity diagnoses, how do soap operas handle the complexities of living with the illness and how will the coverage of Selma Blair post-Oscars impact people with MS? Read on for her take on it all.  I will be the first to admit that before my diagnosis of MS that I never paid attention to the mention of the words Multiple Sclerosis on any programme on TV, newspaper or online articles. But as soon as I was diagnosed I started to notice whenever it was mentioned and I found myself wanting to read or watch what people were talking about or how they were portraying the disease.  In 2017 two popular English soap operas, Coronation Street and Hollyoaks, both ran storylines with a character diagnosed with multiple sclerosis. Both programmes sought advice from MS charities and worked with people with the condition to help gain knowledge on the illness. The only difference was that in Coronation Street the character was a middle aged man in his sixties while in Hollyoaks it was a young woman in her twenties. I sometimes watch Coronation Street but when I heard that they would be running the story about MS, I decided to tune in to check out how it would be run.  The fictional character of Johnny Connor started to have problems with his vision and balance. While I found the start of the storyline to be great, I found it a bit unrealistic when only a few short weeks after having his first symptoms he had a clear diagnosis; many patients have to go months or even years of getting bounced around from hospital to doctor getting every test under the sun before they get their final diagnosis. There was also a scene months later when he missed his MS medication by a day and he became very sick and was almost hospitalised. However, I thought overall the writers at Coronation Street have done a great job covering the topic; they have shown how MS can be an invisible illness and how a MS diagnosis can have different effects on family members and relationships.  In October of 2018 Hollywood actress Selma Blair announced her MS diagnosis in an Instagram post. In that post she wrote “I have MS and I am Ok” and while it was great to raise awareness in another post she talks about the mental health side of MS and other symptoms. While her post achieved nearly 50,000 likes, it also attracted some media headlines using words such as ‘bedbound’ and ‘heartbroken’. Most people with MS have felt some of the feelings that she talked about at some point but I can’t help but feel that because of posts like this, by famous people with MS, the media decides to paint people with Multiple Sclerosis as helpless, disabled victims.  To be honest, before her diagnosis I had never heard of Selma Blair so I decided to Google her when writing this blog. When I typed her name into Google nearly every article that came up the headline contained the words MS or Multiple Sclerosis. It made me wonder if this, MS, is all the media sees from now on when they look at Selma Blair.  Overall I think it is great that both media and entertainment raise awareness of Multiple Sclerosis,  letting people know that it is an invisible illness at times with no two cases of MS being the same, how varied the age range of diagnosis and that you can continue to lead a normal life with MS. But when I read the shocking headlines mentioning MS, is the media coverage doing us any favours when they write headlines like that? Are we just being painted as helpless victims? Entertainment outlets and media should continue the topic of MS and work with people with MS. How about leaving out the scaremongering next time? 

    Author: Katie St Lawrence - 28 Feb 2019

  • Photo for article: Rural Life with MS

    Rural Life with MS

    This week Niamh McCarron writes on the joys of rural living and how her life, and access to medical services, has changed since moving to Dublin city.  Life with a long-term illness like MS is a balancing act. As time goes on, I’ve learned that I need to balance work with rest and for every ‘big night out’, there is a payback of weeks of early nights. In Ireland, there is also a balance between the services available in bigger towns and those available more rurally. Personally, I’ve experienced both city and country living since I was diagnosed with MS, so when thinking about this blog post I was able to reflect on my time in both locations. I am from Donegal, but I have spent most of my adult life living in Dublin. About a year into my diagnosis, and for the following four years, I was lucky enough to have an opportunity to work from home in Donegal. This period of time allowed me to get used to my MS, at a slower pace. Then, a few years ago, we made the move back to Dublin. Donegal will always be home for me, but I also love the buzz and convenience of the city.   One thing we considered when moving back to the Capital was the impact it would have on my MS and the treatments I receive. My main concern was that going from working from home to being back into the busier world of commuting and office life would play havoc with my fatigue and result in a sensory overload. I mean, I had rolled out of bed at 8.30 am and worn tracksuit bottoms for four years! I was concerned that I wouldn’t be able to deal with Dublin and MS. We partly got around that by moving into a house six minutes from the office. My company know all about my MS, so we came up with plans to help me if I needed to adjust. Next, I had to think about the access to MS services I had in Donegal versus what I would have in Dublin. Currently, I have a neurology appointment approximately every nine to twelve months. Let’s face it; one or two appointments a year aren’t going to upset my schedule too much, regardless of where I am living. In Donegal, though, I had to travel to Sligo for appointments, a 2.5-hour trip each-way. This was fine when I was going to a scheduled appointment, but it was a stressful journey when I was having a relapse and needed to be admitted. Just for ‘normal’ illness, my nearest A & E department was an hour away. In Dublin, I can access the MS Clinic in St Vincent’s before work in the morning and be at my desk by 10 am. I also have a choice of hospitals I can get to pretty quickly if I needed to in an emergency.  Of course, it is unrealistic to think that everyone across the country can have the same level of access to facilities. By its very nature, living rurally means that you can’t have everything on your doorstep. Rural living meant that I was too far away to travel to a lot of local MS Ireland meetings, but it also meant I could be at an empty beach within a few minutes – a ‘therapy’ of sorts that I can’t replicate while living in the city. Rural living can be isolating. One of the reasons I started blogging for the MS and Me blog was to connect with people who understood what I was dealing with. At the time, I didn’t know anyone with MS who lived close to me. Blogging, social media and joining online communities helped bring the big wide world into my wee house in the middle of nowhere.  Those contacts and friends came with me when I moved and they are still with me today. We still keep in touch online only now I have more of a chance to actually meet with them for coffee. It’s lovely to have the ability, at short notice, to meet someone in town after work. There are many days though, I’d prefer to be sitting on my old back step chatting to the cows in the next field – I think this Town Mouse will always be a Country Mouse!  If you would like to get in touch, contact @weeneevie (Twitter and Instagram) or https://www.facebook.com/weeneevie/

    Author: Niamh McCarron - 21 Feb 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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