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

  • 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

  • Photo for article: MS & Me Offers ‘From the Archives’ for the Summer

    MS & Me Offers ‘From the Archives’ for the Summer

    Your team of MS & Me bloggers may seem like we’ve got it all figured out and that we can do it all… we can’t.  Just like you, we need to find balance in our lives.  Many come to read the MS & Me blog looking for answers. They look to our group of award winning bloggers and think, ‘they’ve got it figured out'... 'I wish I did.’  I even had someone post a comment in a recent blog about MS phantom itching that said, ‘If Trevis says it’s real, it’s real’. While we’re all humbled that you think we’re the experts on many things MS, but we’re not. One thing your cadre of bloggers can agree on, is that the only thing MS we are striving to be experts about, is living our best lives with this disease. We have the same challenges, we have the same MS fears, we have the same hopes… and we have the same everyday family stuff to deal with as everyone else; MS or not. To that, just like many of you, we are all struggling with the summer heat, kids out of school looking for something to do, visiting family and friends, trying to plan a bit of a holiday, etc. And, like you, we don’t want our lives to be all about MS all of the time. So, in order to keep our lives in balance the way we hope you are finding helpful, we will be taking a few weeks off from posting new blogs this summer. In their place, we’re going back into our blog archives (we have nearly four years of them now!) to bring you some of our favourites, some of your favourites and some that you may have missed but have a wealth of good information. We’ll be back – fresh and ready to go – with new ideas and new blogs at summer’s end.  We hope you enjoy our ‘From the Archives’ series as much as we’ll enjoy the break. Wishing you and your family a wonderful summer. Cheers Trevis Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 13 Jul 2017

  • Photo for article: MS and Holidays

    MS and Holidays

    This week Niamh McCarron shares with us her pre-holiday preparation plan. Whether it is a room with a fridge, a great day trip or making it through security with medication intact, she has the tips on how to get your great escape in a calm, prepared way. Seven tips for holiday heaven. Since discovering I have MS, going on holidays involves a bit more organisation. Travelling since being diagnosed hasn’t been too tricky, but I do have to make more of an effort to plan my trips. I now have rules that I follow before and during time away from home: 1) Time of Year- My holiday dates aren’t restricted by work schedules and I am able to take annual leave at any stage of the year. This is particularly important for me, because my nervous system reacts badly to the heat (as with other MSers). Trips to hotter climes are off-season in coastal areas with a sea breeze if I get too warm. Our last few holidays have been to Majorca, and the weather there in October and April suit me perfectly well.  2) Travelling Time- Let’s face it, travelling can be the pits and  I find travelling quite tiring. Flying in particular can make me feel a bit rubbish. I get achy, and my fatigue is worse after a flight. I try to plan trips that don’t involve long flights. I pack scarves and books for as much comfort as I can squeeze into a carry-on bag- then I rest.  I don’t want to waste precious holiday time getting over the journey when I arrive! 3) Packing Medications –The worst part of packing is sorting out my medications to take with me. And I only have a small amount to pack. I know some of my MS friends have to bring a lot more, and I greatly admire their packing skills. Before you go, check with your airline/airport about their restrictions. Make sure you have the required documentation in advance and the medications are easily accessible. And – this might seem a bit cheeky- when going through security, don’t mention you have the medication with you unless they ask about it.  I have my medications in my bag or placed in the tray and my letter neatly stowed with my boarding pass (bottom of my bag!). If they ask about it, I can easily show them the information. If they don’t, I’ll just be with the rest of the masses, trying to get my belt back on while keeping an eye on the little old lady behind me who is SURE to want to steal all my belongings. 4) Trips and Excursions – On holidays I like to relax and see a bit of the country we were visiting, so a couple of day trips are usually on the cards. I try to make sure I have a rest day between busy days. I also try to arrange trips that will happen at cooler times of the day, or plan to be indoors enjoying a cool beer when it gets very hot. I try to find out about the area before I go and what it will be like- if it’s going to be very hilly or uneven cobble ground, that can make walking very awkward for me, so I need to be sure.  5) Eating and Drinking – Wherever we go I love to try the local food and drink. Since starting the Overcoming MS Recovery Programme last year, it can be awkward to find something suitable on a menu, home or abroad. So, the places we go to have a wide choice of fruits and vegetables and vegetarian options. I drink plenty of water which is just good advice for anyone in the heat. If I have to alter my eating when I’m away, I do. This is my time to have nice meals with my husband, and not spend an age wandering around looking at menus.  6) Hotel Facilities– Sleep will mean a great or a grim holiday. Make sure your room, your bed is suitable for you. I don’t particularly care about the number of stars a hotel has as long as it’s clean and comfortable. I have to keep my medications refrigerated and use a cool-pack or cool gel on my injection sites. I also need a lot of chilled water; if I get too warm and dehydrated I feel terrible. A dark room is essential with air conditioning/fans to cool it down before bedtime. Otherwise, the next day I’ll have heavy legs and arms and really struggle the next day. While I can manage stairs fine most of the time a lift makes life so much easier particularly when I can barely lift my legs due to fatigue. 7) Home Comforts- Finally, I take some small home comforts with me to help me relax- ear plugs and eye mask and a little plug in fan to keep by my bedside. And a big wrap scarf I use to keep me shaded and doubles up as a blanket if I get cold - somehow I can feel cold when everyone else is roasting by the pool!! Our main reasons for going on holiday are to get away from the normal day-to-day routines of life, to relax and relish the special things in life. MS comes with me but I’m determined to ensure that, with my planning, MS won’t be interrupting my bliss. In the future, travelling may become more difficult but until then I will plan and refine my holiday routine so I and my family are not interrupted by the other (unwelcome) travelling companion.  Now, I am off to tot up my remaining annual leave and try to squish in another trip or two, this year.  original blog published 14th July 2016

    Author: Niamh McCarron - 06 Jul 2017

  • Photo for article: Living Beyond MS

    Living Beyond MS

    This week Trevis Gleason talks about how sometimes, it can feel like multiple sclerosis is everywhere in our lives. It’s important to focus on the rest of life too. Writing about multiple sclerosis for over a decade, advocating, campaigning, ‘ambassadoring’, insurance paperwork, doctor visits and experiencing MS symptoms just like you, it can sometimes feel like my life is all-MS, all-the-time. It’s not, but it can sometimes feel like that. Living with MS – rather than suffering from it – is important, but sometimes I have to remind myself to live beyond my disease. I once had been a research subject in a Quality of Life study for people living with MS. There were great questionnaires that we would fill out about how we saw our lives as we tried to live with the disease. I took copies of one of these survey sheets and gave them to the dozen or so men that were in my MS self-help group in Seattle (we called our group “Poker Night” so no one had to say they were going to a support group meeting). When the meeting began, everyone was handed two copies of the same survey. They filled out one and I collected them (they had anonymous markings so I could make sure that the second batch matched the first). We then went around the room and everyone had 5 minutes to talk about themselves – where they were from, what they did, what they loved – without mentioning anything about multiple sclerosis. We found out about aspects of the lives of the men we’d known, in many cases for years, but hadn’t heard of because it was, well, an MS support group.  Everyone enjoyed the exercise and then I had them fill out the second form. When I compiled the data, the quality of life score for each person raised by as much as 30%.  Just one hour of not thinking about, talking about or hearing about the disease we know so well and these guys felt better about their life in general. And some of them felt nearly a full third more hopeful, happy, and encouraged about their future. One hour! Sure, it was an unscientific study, but each and every one of the people involved answered the questions in a more positive manner. Even flawed in method, the underlying concept is sound.  If we focus on something other than MS, we will feel better about our lives. It can be difficult, sometimes, to focus outside of a disease that can affect so much of our brain, body, lives and loves. That’s one of the reasons I so love gardening as a hobby. I can do it in a way that I completely forget (or almost completely) that I have MS. It takes my mind away from the symptoms, from the difficulties, from the unknowns. I can just be in the garden with the plants. It’s important to live in the life beyond MS from time to time so that we can be more than our disease. So our brains remember that there is life to be lived and that life can still be very good. Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 29 Jun 2017

All MS and Me Blog Articles

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.

Latest News

More news

What's hot

Survey

Research Survey

What are the research priorities of the MS Community in Ireland? Have your say!

Find out more

Events Calendar

» Our next Event

29 July 2017: Ongoing Physiotherapist led exercises for people with MS. 

View all events

eNEWS SIGNUP

If you'd like to receive e-news updates from The Society please enter your email address below. If you want to know more about how we manage personal data then please see our privacy policy.

My local MSI

Map of MS Ireland's service areas South Mid West West Midlands South East North East North West North Dublin City and Fingal South West Dublin and Kildare South East Dublin and Wicklow