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

  • Photo for article: Fatigue and MS

    Fatigue and MS

    This week from the MS & Me archive Helen Farrell takes a look at the affects of MS-fatigue on friendships, employment and daily life. 'Nobody realises that some people expend tremendous energy merely to be normal' Albert Camus  I know the French philosopher, writer and journalist Albert Camus didn’t mean to describe the physical effect that MS has on us when he said the above; he was probably referring to a state of being, or a philosophical approach to life. But the quote describes very accurately the extra energy we need to expend when we have MS, before we even begin to appear ‘normal’ to others. Many times this effort fails, and our shortcomings are painfully obvious to normal people. Other days we are able to hide behind a veneer of normality but privately hit rock-bottom later on, away from the outside world. At times I coast between the two extremes; ultimately my level of fatigue makes most of the decisions in my life these days, and it is for me, without a doubt, the very worst symptom of MS. All spontaneity leaves your life when you live with fatigue. You know you have to do a grocery shop today. Immediately you will need to factor in a short lie-down to recover afterwards. This eats in to your afternoon time. You won’t be able to run through the work you’d planned. Dinner will have to be shortened and simplified. You have processed food and beans. It costs more and is less nutritious. You are ill-prepared for work tomorrow. Housework is not done, you’ve got cranky, you feel bad and you have let people down.   Fatigue has a habit of altering the geography of my mental-maps; a journey to the end of the road seems exhausting one day, filled with potential pain and tiredness. Then on another day I start on the same journey and can go further than my destination without even noticing, to my delight. One day to go into town seems way beyond me but on another day I have a walk and don’t feel like ‘death warmed-up’ after it. On really bad days, my fatigue can so great that I feel like begging those in charge of any public-place for permission to lie down on the hard floor for 10 minutes, and sleep in front of all the passers-by. And I would too! On days like that, even getting dressed feels like a big effort.  When I’m in work, on my 1 or 2 day-a-week schedule, some lunchtimes I lie on the floor of my old office with a blanket covering me, and set my alarm on my mobile. It can make difference between spending the afternoon in a horrible slush of cognitive-dysfunction and pain, or an afternoon of productivity and less pain. It’s also given one or two people a huge fright when they have walked in on my nap and thought that someone has collapsed! I’ve learned to put a sign saying ‘Helen Resting’ on the door these days.  I thought long and hard before embarking on this blog-journey and I wanted it to help others feel less alone, to perhaps raise issues for them that they could think about, to their benefit, or to help another person see alternative way of tackling a problem. I decided I had to be honest, but it is a very difficult thing to share with you that fatigue has limited the size of my family. With one son, I can manage (just), but it hurts so much not to have given him a sibling. My fatigue is so great that I could not have coped with two children. Only those who have a problem with fatigue will understand this properly. Normal people have said things like ‘oh, you’ll manage, you’ll be grand’ or ‘oh you don’t want to get to 45 and regret it’. You don’t have any kind of crystal-ball with MS but it’s not called progressive for nothing, and I know I will always regret that I wasn’t able to take a chance on a second child. I barely got through being a Mum to a new-born, age 36, and now, at 41, I feel that ship has sailed. Every time my son asks me ‘Mammy, will you play with me’? or when I see the closeness between siblings, I feel a knife turn inside me, for him. I have to console myself that I have done my best by him, that he has a great network of cousins close-by, and that maybe a second child would have cost me my mobility. I hate the effect fatigue has on my wonderful little son. I know that sometimes he resents me having a rest, although we snuggle down together on the sofa and he gets to watch a DVD, but he’d much prefer a Mammy that did more with him. Our time together is good though, apart from my naps. Perhaps I expect too much from myself? Sometimes I think ‘well, I did make a pizza with him, play hockey down the hall, a game of snakes and ladders, and do the homework with him. One DVD isn’t going to harm him for life after ALL that quality time’.  Fatigue eventually forced me to resign from my good job. I doggedly hung on to full-time work after my MS diagnosis, and watched my social-life, personal time, everything shrink and shrink until all I could do was work, eat and sleep and even then it got too much for me.  I got to 10 years post-diagnosis and I resigned, not seeing a solution to accommodating my need for a 2-day week. Ironically, now I am working in my same role but on a 1/2-day basis a week. I take some research work home to complete it. This suits me well because I still get a chance for naps and rests, and the two working-days are not consecutive. It is so fantastic to be back in the workforce and engage my mind in work, librarianship and research.  Fatigue steals in and changes friendships and relationships; they need shared time, fun, chats, and meetings to flourish properly. Some people can never adjust to shorter meetings, no spontaneity, adjusted time-frames, and different venues. No more long boozy dinners out or 3-hour walks in the countryside. When I’m invited to a big family event I am always so thrilled, so happy to see people, but worry about how long the ‘fallout’ will effect me afterwards. A wedding would necessitate my husband taking a day off afterwards to help me out at home, me sleeping a lot the next day, and me feeling below par for up to a week afterwards. People sometimes hear ‘I need to rest’ as an excuse, and gradually drop me over time. I adore the friends who have stuck with me. The amazing ones who have quietly said at get-togethers ‘You can use my bedroom for a nap later if you want’, or who have said kindly ‘Would you be up to that’?, ‘Tell me if I’m walking too fast’? or ‘How are you this week’ and really meant it. Those friends are so, so precious.  I’m probably one of the few people in Ireland who looks at the weather with dread as it approaches 18C+, because I know my fatigue is going to get worse the higher that the temperature climbs. This year I got myself a car with air-conditioning (woo hoo!), and I am hopeful this may have a positive difference on coping through the summer heat. Two things stood out for me when I was on the annual family-day for people with MS this year; the first was that I was deeply envious of the man who brought a lightweight portable-bed with him, they other was that I was the first to leave before the allotted time was up, because I had run out of energy and needed to have a nap in the car on the way home while my husband drove.  I try to keep exercising when I can, for if you can brave it through the initial increase in fatigue and pain, I’ve discovered after 3 weeks you get a reduction in your fatigue. In the winter months, I seem to act like a large magnet to bad chest infections, and they can take a month to clear. Then, I am back to the beginning in trying to get my fitness up. It’s very annoying. I was really hoping that Symmetrel or Modafinil would work to alleviate the fatigue, but they did not. They gave me insomnia or dizziness, but no decrease in the lumpen form I become without naps. This is unusual though and shouldn’t put you off trying the meds. It’s just a few of us have a bad, or no reaction to them. Hopefully they will work for you. I drink a large amount of coffee and diet coke, and it does have its uses! I take supplements like green tea extract and am hoping to get some N-acetyl-L-Carnitine and Alpha Lipoic Acid to see will they help. They are nutritional products that have been tested at high doses, and there’s an article on PubMed that proved they can work. Maybe they will provide a breakthrough for me.  Normal people say ‘oh I’m exhausted this week’ but it’s not the same as this MS fatigue; it’s like the precursor to influenza, or the fatigue you feel in early pregnancy; a tiredness that you cannot brazen through; it can make you put the coffee-pot in the fridge, the milk in the oven, and forget what day it is. It peels your skin off and makes you feel raw, it turns up the volume of tinny noises and they go through your brain in jabs of pain. I lose patience with myself and others. I forget why it is I’ve just gone upstairs, mix up people’s names; forget major events and even what I’d arranged to do that day. I feel stupid. In December I made a special arrangement to visit a friend to bring over Christmas presents, and then turned up on her doorstep without them. Sometimes people also say ‘sure I did that last week’ but I am privately thinking, yes, but not a few times every day! Happily, after a nap, my brain usually fires more smoothly, the pain lessens and everything is a bit less of an effort. I deeply resent my naps for the time they steal from my life, the things I could be doing if I wasn’t having to rest, but on one level I love them too when I feel a bit recharged after a lie-down.  It all sounds very depressing but that’s one thing I’m definitely not. I am so grateful (incredulous really) about how well I’m doing mobility-wise into my 16th+ year with MS. I know what this MS can do, when it feels like it. Despite crushing, smashing fatigue, I am still lucky enough to manage walks some days; occasionally do weights, cook a nice dinner, get a bit of ironing done, or walk my son to school. Each day like this is like a gift.  I expend a huge amount of energy just trying to appear normal (thanks Camus). Not for appearance’s sake, but because feeling somewhat part of the human race, somewhat useful to others, somewhat normal, is an essential component of my mental health. The days I manage to achieve something, I feel such joy. Even it means that later I will crash and have to take an hours’ nap in the afternoon, the sense of achievement is worth every bit of the exhaustion. I can awake with a clearer, functioning mind, and so much less physical pain AND a sense of achievement.   Before MS I had a driven personality that wanted to do all things excellently. MS has made me lower these standards, and sometimes any effort is the best you’re going to get out of me! But the real-me seethes with frustration at this situation. I still want to achieve excellence, exactness, thoroughness and exhaustiveness in things that I write, study, or do. I hate having to see less than 100% efforts in what I create. None of this ‘sure it’s grand’ for me. But MS-fatigue has other plans and sometimes plans don’t even start because of it, much less achieve excellence! Can you ever be ok with this if you share my personality-type?  So, DAMN you fatigue! I will fight you at every chance I get. I will still try to achieve things despite your constant presence. Sometimes I get away with a few days without naps and it feels great. Then very, very occasionally, maybe once every six months I will get a ‘magic day’ where I feel normal. Just for 24 hours. The feeling of euphoria that comes with this is so great that I have no doubt that if a cure were to be found, I would be off running up mountains and jumping out of airplanes for skydives at any chance I got. For those 24 hours I do more than one big thing in the day and don’t get exhausted. I feel invincible. I cram so much into that day that I inevitably crash for the following few days but by God it’s worth it. I can dine out in my head on the ‘magic day’ for weeks afterwards. Here’s too many random ‘magic days’ for you and me ahead. In the meantime, be good to yourself, allow yourself rest and let yourself know that you are taking good care of your health. And if you do try them I hope the anti-fatigue meds work well for you.  Helen

    Author: Helen Farrell - 14 Dec 2017

  • Photo for article: A Stress Free Christmas

    A Stress Free Christmas

    This week from the MS & Me blog archive Joan Jordan shares how she is *learning* to have a stress free Christmas. This year, I will celebrate my eighth Christmas with my MS diagnosis. I choose the verb celebrate very carefully as it is not the first one that springs to mind when I consider how this unwelcome guest affects the way I mark the festive period. In Christmases past I have stubbornly battled to ignore the fact that I have a chronic illness. I grabbed every party invitation December threw at me just to prove that I still had it. I pulled out all the stops and did my level best to swing from the chandeliers. This ended in exhaustion and tears of frustration at my altered self. On one occasion, I paid for it dearly with a January relapse. I have also tried another approach whereby I assumed the role of the Grinch at Christmas and cut myself off from the people I love, the very people who genuinely wanted to spend time with me- despite my MS. The people who accepted my limitations and were willing to find a middle ground where we could still enjoy ourselves. The people who didn’t constantly harp on about how much craic the old Joan was. This led to a lonely time where some of these lovely people eventually stopped making the effort.  As time passes, I take good advice from wise companions who have travelled the MS path for longer than I have. I am learning to strike a balance, the right balance for me which strangely enough is also the right balance for my friends and family! I now think carefully before I accept an invitation. If it is feasible, I accept it but make it VERY clear that sometimes- because of my illness, I need to cancel plans at the last minute. If the invitation is not realistic, I explain why and suggest a compromise.  Things have changed. The thought of the traditional meander down thronged shopping streets on Christmas Eve now seems like the opening scene of an Indiana Jones movie BUT the prospect of a hot-chocolate in our favourite coffee-shop a few streets away (where we know we will get a table) ticks all the boxes. The frantic dash around department stores to snap up last-minute gifts has been superseded by on-line shopping where the parcels are delivered right to my door. A trip to a jam-packed restaurant has been upgraded to a take-away in front of the fire where we don’t have to worry about making swift exits due to my unpredictable bouts of fatigue. This blog is titled ‘Having a Stress Free Christmas’. I’m afraid that I don’t have all the answers but I know that as the years pass I am learning how to help make Christmas less stressful and hopefully, more enjoyable for me and those around me. What do you find works for you? I would love to hear your suggestions. And most of all- I wish you a Merry Christmas and a Happy 2018. Blog originally published December 2016

    Author: Joan Jordan - 07 Dec 2017

  • Photo for article: My Bucket List

    My Bucket List

    This week from the MS & Me archive Willeke Van Eeckhoutte lets us in on her bucket list, how she uses it and the importance of having goals in her life.  The older I get, the more nervous I become of not being able to achieve all the things I set out to do. After all, every year rushes by, seemingly at a faster speed than the year before! Science is still to crack the code of becoming younger instead of older. And therein lies the problem if you’re a non-bucket-list achiever- at some point in life you will begin to think “Argh, if only I’d…!” done something. But the clock can’t ever be turned back. Being of the opposite kind, I yelped an “Argh!” when I realised I lost all my documents during a laptop crash last year, and I had to rebuild, rethink - or even worse - try to remember what was on my bucket list to begin with (Memory issues… ouch!). Having a bucket list is all about personal fulfilment, and it doesn’t really matter how short or long your list is, as long as it has/had substance over form. My list was/is filled with generic things I imagine many people would love to do- like swimming with dolphins or winning the lottery. Other personal dreams would to be in touching distance of wolves or have much-needed weight loss surgery.  Goals that have already been fulfilled are living in Ireland • Watch sunrise/sunsets on the west coast • Newgrange • WB Yeats’s grave • Rome • Venice • The rest of Italy (•½). Study psychology (• ½). Writing a book (• ½) and many other things. The list is therefore very much a work in progress, which can expand or shrink at any given time. Thankfully, I’m someone who likes to grab the bull by the horns. Where and when possible I chase my dreams as best as I can. Like moving to Ireland. This was a wish and a teenage dream. In it, I have the sea in front of the house and mountains in the backyard. I would also marry someone Irish, who has red cheeks from always being outside and we would live happily ever after. Sadly, marrying someone with red cheeks never happened, and where I live has neither beach nor mountain. Nevertheless Ireland has been a happy home for the last 13.5 years. MS may have tempered the speed of fulfilling the list somewhat, but there is still some life left in it. I am quite mindful though that it doesn’t turn into a check list that urgently needs to be ticked-off and wiped clean every day. The way I treat my bucket list is to forget about it. Continuously aiming for the goals can take away the beauty that is already around us, and in the people we share our life with. We cannot forget to live in-between the goals we have chosen to put down on paper/computer. You also cannot forget to “live in the now” (as mindfulness therapists call it) and make time for those around us. The present is now, it is all we have, it IS as important as what lies ahead. Spontaneity happens when you allow and figuratively step out of the way.   In hindsight, a week in Rome with my mum earlier this year tops everything else I have done or achieved so far. We owe it to ourselves to keep having dreams and to continue putting things on our lists. Life would be rather dull otherwise. Like Henry David Thoreau said, “Do not lose hold of your dreams or aspirations. For if you do, you may still exist but you have ceased to live.” It can reignite your dreams to put them down on paper and remember what lights your spark. Check out https://bucketlist.org/ for some inspiration.  If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter  originally published April 2016

    Author: Willeke Van Eeckhoutte - 30 Nov 2017

  • Photo for article: Accessible Parking Spaces

    Accessible Parking Spaces

    This week from the MS & Me archive, Declan Groeger shares his frustrations about accessible parking spaces used by people NOT living with a disability My 'MS Roller Coaster Ride' officially began in 1988. You know what I mean when I refer to it as a roller coaster ride- there are so many ups and downs and the speed of the ups is never as fast as the speed of the downs. I have grudgingly come to accept, and for the most part live within, my limitations. I have set and reset my targets and my dreams as my abilities have changed. As I have said previously, I’ve accepted the limitations that MS has placed on me but what I cannot accept is the limitations I face as a result of the actions of my fellow citizens. I refer to those thoughtless and reckless people who abuse 'Designated Disabled Parking Spaces'. I wish I could explain the importance of designated parking spaces in a few words but for those who understand no explanation is necessary and for those who don’t understand or care, no explanation is possible. Accessibility is a right, not a privilege. I abhor inaccessibility whilst accepting that it is a fact of life for a variety of reasons (poor design, lack of thought). It should be suffice to say that appropriate parking facilities are a vital element in the social inclusion of people with disabilities.  Who does it? Why do they do it? I have my theories and here is a number of different types of abuser who live among us: The Reckless Abuser – He/she simply doesn’t care what difficulties are caused by his/her actions The Thoughtless Abuser – He/she just doesn’t consider the difficulties caused by his/her actions. These people are members of the “Just a minute brigade!”. The System Abuser – gets a badge fraudulently and is, in my opinion, the worst offender. Family and friends who treat the badge as a perk and use it when the registered person is not present.  What can be done to mitigate the problem?  1. The badges must be checked.Traffic wardens, Gardaí and private parking security must be made aware that we will not be embarrassed if our badges are checked.  2. The cards should be confiscated, if used fraudulently. (Subject to legal constraints). 3. There must be strict adherence to the qualifying criteria before a badge is issued.  4. Appeal to the better nature of people who don’t need a badge anymore, but who find it convenient, not to use them (good luck with that!). 5. Hit people where it hurts- their pocket. In October 2015 the city of San Diego increased the fine for misuse of parking permits to $740. Closer to home in Ennis, Judge Patrick Durcan fined a driver €500 and banned her from driving for 6 months. In reference to the case, Conor Faughnan of AA Roadwatch referred to misuse of disabled parking spaces as “an obnoxious thing to do”. Have you any thoughts on this issue? Further reading Information on Disabled Person's Parking Card please visit Citizens Information DisabledGo facilitate comments and photographs on accessibility in Ireland & UK on Twitter as does MobilityMojo I have my own blog able2access.wordpress.com where I highlight accessibility matters. Originally published February 2016

    Author: Declan Groeger - 23 Nov 2017

  • Photo for article: Changes Afoot at MS & Me

    Changes Afoot at MS & Me

    The faces of the MS & Me blog are changing. Trevis Gleason gives his thoughts on the difficulties that change can bring but also the benefits of adapting to different times. Multiple sclerosis can be overwhelming… and not in the good way.  We at the MS & Me blog are overwhelmed right now… but in the good way. Earlier this autumn we put out a call for writers as we close out our fourth year in existence and look ahead. In those four years, your blog (we see this space not belonging to the writers alone; we are a blog community, so it belongs to us all) has been recognised domestically and abroad as being one of the most affecting and poignant health blogs on the web. As for our current cadre of bloggers, we’ve had our share of personal successes (and challenges) as well. We have become parents and grandparents (as well as aunties or uncles multiple times), we’ve changed jobs, advanced in our careers, or got our first jobs back after having to leave previous employment because of MS. We’ve published books, produced films, been recognized for our personal blogs, and brought our personal works as well as the work of MS Ireland to a European and international audience. For some our MS has stabilised, for others it has advanced. For the past four years we have shared our thoughts, our reactions, our hopes, fears, and dreams with you. It’s been a fair bit of work; trying to fit it all in sometimes. But it’s been important work and we think living with MS might just be a little bit easier because of the space we have created within our blog community. And why do I now say that we’re overwhelmed? Because so many have seen the results and have applied to join this “MS & Me 2.0” as we expand. Four years ago we felt ourselves lucky to find nine people who might be willing to jump aboard as voluntary crew on this ship of discovery. We, frankly, weren’t sure about our course and we were surely ingenuous as to a possible destination. What we have learned is that our vessel is making waves in the form of an international conversation and we need a few more hands on deck to continue our voyage. As we spend the next few weeks reviewing submissions (well over a score this time), know that the process is to be transparent and the pitch level. Our current bloggers who would like to stay on have been asked to submit their intent the same way that newcomers have. It’s not a comfortable process for any of us – growth seldom is – but it’s an exciting time. As the year draws to a close and we put together our new team, we’ll bring back a few posts that you may have missed, some particularly pertinent writings and perhaps a laugh or two. We look forward to introducing you to our team in the New Year and sharing our views of living (and living with MS) through several new and newly polished lenses. It’s a season of celebration and change. We celebrate what MS & Me has been and we celebrate the changes currently underway… but it’s still a bit overwhelming. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning books, Chef Interrupted, and Dingle Dinners are in the shops now. Follow him via Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com  

    Author: Trevis Gleason - 17 Nov 2017

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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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