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

  • Photo for article: Before MS I...

    Before MS I...

    This week from the MS & Me archives series Aoife Kirwan looks at life before her MS diagnosis. Before MS I really took my health for granted. I rarely went to the doctor. I was afraid of needles. I didn't think about what I ate or what time I ate it. I took little things for granted like ticking 'no' when asked if I had any known medical conditions. I guess I never really had to consider these things before and each first that came along really got to me. When shopping for car insurance after my diagnosis I wasn't able to get many quotes online because I had to tick 'yes' to the medical condition. There are more obstacles in the way... extra paperwork! Before MS I thought I had all the time in the world to achieve life goals. Now I have to plan, I have to think ahead, I have to achieve goals in a shorter space of time. Life is harder, and I am harder on myself because of it. Before it became apparent in me, I didn't think young people could 'get' it. I never thought that I would have all this on top of 'normal' life. Before MS I didn't see the injustice of our health system. I didn't know that people had to fight for treatments. I didn't know that your postal address determined what you were entitled to. I had no idea that life was made harder for those who it was already hard for. Before MS I never questioned the opinion of a doctor, I trusted in them completely. I never thought that my opinion would factor into a medical decision. I never knew I would have the confidence in myself to make decisions that affect my health. Before MS I couldn't pronounce the word encephalomyelitis. I had never set foot inside a research lab but since my diagnosis I have travelled to the International Multiple Sclerosis Research Centre in New York, twice! Before MS I never knew I would have such an interest in research and information and even more, sharing that. Before MS I did not know that the MS community was made up of very smart, wonderful and strong people. Before MS I probably would have considered MS a weakness but now I know that having MS and carrying on with life as normal requires more strength than most people have. We don't always realize how strong we are until being strong is the only choice there is.

    Author: Aoife Kirwan - 17 Aug 2017

  • Photo for article: The Neurology Waiting Room

    The Neurology Waiting Room

    This week from the MS & Me archives series Willeke Van Eeckhoutte discusses people waiting, wondering, dreading, hoping from the Neurology waiting room. It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them has to say. A neurologist looks at your test results, gazing, thinking. Do they wonder how they will tell you that from this minute onwards, your life will be different, that you will have to change your lifestyle to suit your new, closest and most annoying illness, that your body had betrayed you? People with neurological illnesses walk in and out. Often their illness seem larger than what they perceive themselves to be. For the ones sitting, waiting by themselves, without someone accompanying them, time goes slow. For the ones waiting with their boyfriends, spouses, parents, time is gentler. They talk about fears, or they talk about anything but the reason why they’re there. For me, MS will always be a lonely illness because I am the first in my family who has it. It hampers, harms and sets boundaries where I want none. It shows me that people are vulnerable, open to inner destruction of a central nervous system gone wrong. For me, it is love, friendship, knowledge and joy. It made me who I am today, strong, with the will to live fully. I will not falter, go into self-destruct. I will not go where I am not supposed to go. Stood at my own six feet under in 2008 and I returned. It wasn’t time yet. Waiting room fills with familiar faces with MS… harmed but alive, dreaming and hoping. One day neurology waiting rooms will be empty, MS cured and eradicated. Lives back to the way they used to be. Love. Friendship. Healthy. It is not a dream. It will be reality Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more. Originally published May 2014 from the Neurology waiting room in Beaumont Hospital, Dublin

    Author: Willeke Van Eeckhoutte - 10 Aug 2017

  • Photo for article: MS, Smartphones and Apps

    MS, Smartphones and Apps

    This week from the MS & Me archives series - Helen Farrell looks at her smartphone use... I have a confession to make; quite often my smartphone gets more of my attention than my husband does, and it is a mutual situation with both of us tapping away in the evening as we read what has happened for friends on Facebook or the like. Years ago I was an avid fan of Star Trek: The Next Generation. In one episode the crew was taken over by a device that had a game so addictive, they were unable to break free of playing it obsessively (“The Game”). Only a young crew member and his friend were able to realise the evil hold the game had on them and free the crew of it. I am reminded of the episode when I find us tapping away on our smartphones, staring at the screens and ignoring each other and the television as we dual-screen to our hearts’ delight. How has this device such power over us? For information-addicts like me, it is a constant source of learning, entertainment, escapism and more. When I think back about what I did during periods of boredom in the past, I remember reading the back of cereal packets, propping up books as I ate, bringing books everywhere with me for a few minutes of escape. My smartphone obsession is probably no different than how I used to behave. However, I notice I am not as relaxed when reading material online. So much to keep up with! So little time! Books are a much more mindful experience and gentle on the eyes. I am now re-cultivating my paper-based reading and it truly does give a greater feeling of relaxation than browsing constantly on my smartphone.  Which brings me to a new phrase that I recently learned of, “Sleep Procrastination”? Unfortunately, I have always been prone to the ordinary type of procrastination, relying on the stress of flying by the seat of my pants to wing me through on far too many occasions, although I am improving a little with age! Sleep Procrastination refers to putting off bedtime, or rather, sleeping, in order to read – and it is mostly refers to online reading. It is the cause of sleep deprivation, poorer mental health, weight gain and all manner of bad things. You can read more about it here, but suffice to say we really need to turn off that smartphone or whatever is keeping you up, and prioritise our sleep! Us MS’er’s are already prone to poorer sleep and greater amounts of insomnia, so why are we letting these devices dictate our lights-out time? Just do it! Turn the light off earlier tonight, and you will feel better for it, I promise.  Used to our advantage smartphones are wonderful things. I have never found MS-tracking apps useful. All they do is to focus my attention on my MS, and that is the last thing I want to do. It already gets far too much of my time, my life and my energy. But there are a load of apps that I DO find useful and they have improved my level of mindfulness and calm. I have an android device and I favour apps that have a low amount of permission requests (for security reasons) and are free from the Play Store. My favourites are:  The Pedometer app is great for showing me when I am starting to slow down. It can track Kmph as well as the normal step count. Not only does it encourage me to keep trying to walk as much as I can manage, if I see my speed dropping it can alert me to a possible need for more rest, or an upcoming relapse.  OMM is a cute little 1-minute meditation app that is great for people who are useless at meditation like me. I find I am more likely to do a 1-minute exercise regularly than commit to a longer session.  The Mindfulness Bell is great for centering yourself, taking a moment to relax and breathe properly. You can set it to ring at different times, different frequencies; just don’t forget about it heading into a work meeting like I did! Another night I went out walking and I had looked up at a full moon with the clouds racing above me, just as I was about to pass the creepy spot where 2 thieves had been hung in the 1800’s for a violent robbery and the mindfulness bell tolled loudly, making me jump out of my skin!  ‘Vowel Please!’ is a Countdown-alike app that’s good for exercising the oul’ grey matter and winding down from all the monkey-mind thoughts and worries whirling around our heads.  Whenever a new technology is introduced people tend to fret about it. Some people wrote warning articles in Victorian Britain about the speed of railways and how our health would suffer to travel so much faster than natural horsepower. Microwaves would be capable of frying our brains, destroying our fertility, adulterating our food, frying our fertility. Did these things happen? We can recognise panic in the face of technological advancement, but can we equally recognise when we have become obsessive about being used by a device, rather than using it for our advancement and entertainment? It is up to us to make sure that we are using smartphones to our benefit, rather than them having the power.  Let me know what you think of smartphones; good or bad? Do you have any favourite apps?  Originally published August 2016

    Author: Helen Farrell - 03 Aug 2017

  • Photo for article: MS Guilt

    MS Guilt

    This week from the MS & Me archives series - Declan Groeger discusses MS guilt. Greetings fellow travellers on the long, winding, pot hole strewn road that is Multiple Sclerosis! Have you ever sat at home doing absolutely nothing while your significant other was busy doing housework or other necessary jobs like gardening? Did you ever get that uninvited thought run through your mind like a ‘Will O’ The Wisp’ flitting around inside your head “If only I could do more?” And then the thought vanishes almost as quickly as it appeared. It is then replaced by a healthy dose of realism. All those trite one-liners spring to mind in rapid succession; wake up and smell the coffee, get real, get a grip. Realistically there’s not a chance of that happening. The spirit is willing but the flesh is weak. Jean and I have been married since 1979 and I was diagnosed with MS in 1988. There are times when I still feel peculiar about not ‘pulling my weight’ in the household. It’s not really guilt but it’s very close. Maybe it’s more a male hunter/gatherer thing and the consequent feeling of inadequacy and inability to do’stuff’. Jean knows as much about MS as I do and my ‘idleness’ is never an issue for her but sometimes it’s an issue for me. This is one facet of MS Guilt. There are a large variety of symptoms associated with MS and I think that I have escaped very lightly with my particular MS. I feel peculiar about that when I meet other people whose MS has progressed more rapidly than mine. This is absolutely illogical because I don’t feel jealous when I meet others whose MS is less debilitating than mine. In fact I wish them well and hope that their wellness will continue far into the future. Another facet of MS Guilt? I go to the gym a number of times a week for 30 to 45 minute sessions. I’m working hard to stay as fit and mobile as possible but the gym work is not translating into ‘house fitness’. I feel guilty about that. Am I being selfish in maintaining my gym regime? 30 minutes in the gym requires 2 -3 hours rest after. Would I feel less guilty if I did 30 minutes of housework and then rested? Probably. More MS Guilt? These guilt thoughts usually manifest themselves when I am feeling less than 100% and they are usually short lived. I don’t feel guilty for having MS and on an intellectual level I know that the guilt I sometimes feel is irrational and illogical but I can’t do anything about it. Or can I? If you agree with the premise that worry is a waste of time then MS Guilt is an even bigger waste. Can anything be done with these useless, energy sapping, feelings? Mindfulness and Yoga are good weapons in the battle against MS Guilt.  Does anybody else feel like this? And if so, what do you do about it? Originally published June 2015

    Author: Declan Groeger - 27 Jul 2017

  • Photo for article: How A Little Word Can Make All the Difference

    How A Little Word Can Make All the Difference

    This week from the MS & Me archives series - Lucina Russell discusses how words people use to speak about people with MS has an impact on our identity. There’s also mention of dating and road frontage! I’ve always hated labels. As a child, it was the itchy, scratchy ones on the back of new tee-shirts that had to be cut off before wearing them. In later years, it’s the other ‘labels’ that have caused me more discomfort. The labels that stick, that brand you. The ones that are hard to shake off once you have them.   Ones like ‘MS Sufferer’.  Big label.  Huge connotations. I should say that I absolutely and respectfully acknowledge that there are many people with Multiple Sclerosis whose journey with this illness is a lot rockier than mine, who ‘suffer’ more than I. I am conscious of those people particularly when I write this and I understand that they may disagree with me, because their experiences are different than mine and may feel that their rockier road should be recognised as such.   However, I write this taking a broad view, thinking of myself and the many people that I have encountered who have MS since my diagnosis.   When you apply the ‘MS (or other chronic medical condition) sufferer’ label, you are allowing the label to consume the person, with the individual coming a close second. The media are divils for it. Maybe ‘MS sufferer’ makes a better headline than ‘person with MS’, but in my opinion, it’s neither a useful nor always accurate description.   To me, that horrible noun takes away their humanity, their personality and suggests other words like ‘invalid’ ‘victim’ and even ‘martyr’. It’s not how I want my children to speak of me, even if my health deteriorates. The people with MS that I know are citizens, tax payers, parents, lovers, advocates, sisters, brothers, bloggers, daughters, sons, engineers, philosophers, fundraisers, athletes, who also happen to be have a common monkey on their back. And deal with it they do. With courage, dignity, zest, humour and yes, at times, with anger, disillusion, disappointment and fear.     While I am on my soap box, the phrase ‘MS patient’ bothers me too. It conjures up images of a person passively nodding in agreement to the words of the Master.  Most people I know with MS are very well informed, active and educated participants in the decision making around their wellness and health care plan. In my opinion, a person with MS, or any other illness is only a ‘patient’ when they are in a consultation with, or being treated by their GP, neurologist, or other specialist. Once they walk out of that room, they are back to regular old Citizen Me, getting on with life. Perhaps it would be useful to apply these labels to two personality profiles, one looking for a new job and the other, a date ‘Award-winning civil engineer with 20 years’ experience on large scale international project and Multiple Sclerosis Sufferer seeks exciting new challenge’  or  ‘Twenty-something fun loving girl, with ten acres, including road frontage, looking for a man to share her dreams.  MS patient’ To me, the ‘award-winning’ engineer and even the much sought-after ‘road frontage’ pales into the background, with the medical condition to the fore, in bright shiny lights.  On a number of occasions, I have contacted radio stations and newspapers about their use of the phrase ‘MS sufferer’, to ask them to consider their use of language, but I have yet to receive a response from any of them. That won’t stop me from calling them out about the lazy linguistic choices that put me and other people with MS in badly-labelled boxes. Maybe the words they use don’t really matter to them, but they do to me. For now, I’ll put away my soap box, but in an easily accessible place! 

    Author: Lucina Russell - 20 Jul 2017

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