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

  • Photo for article: My MS Symptom - Footdrop

    My MS Symptom - Footdrop

    This week Joan Jordan talks about foot-drop and the implications it has for her daily life. Talk about issues with your doctor, seek referrals or book an appointment if this is something that is affecting you.  Like many of my M.S symptoms, foot-drop crept up on me over time. The best way I can describe it is that the process of lifting my foot sufficient height to walk effortlessly doesn’t happen. My foot catches on low obstacles (like carpet pile) and I need to make a conscious action to lift my weak foot when walking. Stairs are the hardest because I need to raise my foot the correct distance so I don’t miss and trip. Things get worse as the day goes on and flat, light shoes help. I have tried a device under the supervision of my physiotherapist and the electric signal really did make my foot move appropriately (albeit involuntarily!). I think I would get used to the sensation over time but for now- I am minimising the amount of walking I do and practising the exercises I have learned in yoga class to keep my foot mobile. I’m not a physio- so my best advice if you are experiencing foot-drop is to contact one and make an appointment. I would recommend you ask around people in your area with similar symptoms to see who they favour. Do tell your neurologist when you visit them to get their advice too. I occasionally get called out by people who don’t know I have Multiple Sclerosis for being lazy. Explaining my illness to them generally works. I don’t go into too much detail- I just tell them that I find walking long distances difficult because my right foot drops when I attempt to lift it. Generally people understand and are aware of my situation in the future.   When walking is required- I always ask in advance if the “5-minute stroll” really is an accurate estimation. I know how far I can walk and trying to keep up with a gang of energetic power-walkers when I am past my limit is not good. I always calculate my route when travelling to avoid unnecessary steps and am realistic with friends when we plan events involving much walking.   It’s tough sometimes when my kids want me to join in with activities requiring a lot of footsteps. We usually find a compromise and it doesn’t get to me so much anymore. Do you experience foot drop and how do you manage it? Looking forward to hearing from you!  

    Author: Joan Jordan - 21 Sep 2017

  • Photo for article: My MS Symptom - Fatigue

    My MS Symptom - Fatigue

    This week Niamh McCarron describes what it is like when 'MS Fatigue' sneaks up and a different day might be lined up for her! I had great plans for today! Today could have been the day I changed the world. I was going to conquer my to-do list and have a good hair day. My MS had a different plan, however, and in the battle of good (me) versus evil (MS), MS won. I was hit by a wave of fatigue that meant instead of hopping out of bed to face my Saturday, I dragged myself through the motions of breakfast, showering and back to bed again.  Fatigue is a common symptom of MS. Some of my friends with MS live with fatigue a lot, almost all the time. Others won’t have it at all for ages, and then get hit with it out of the blue. In my experience, it gradually builds up without me noticing. For me, it will often come on after a period of being very busy at work or not taking care of myself properly - those weeks when I rush around having spaghetti hoops for dinner while the vegetables in my fridge start to lose the will to live. I can get away with it for so long, before fatigue will remind me that I need to stop. Slow down. Take a breath. Fatigue is a hard symptom to describe to people. I mean, I can say that it is tiredness, but everyone gets tired. My friends with small kids, or who work long shifts at work, know all about being tired. Most days I feel tired myself. Fatigue is different. When it sneaks up on me, it’s like walking in wet sand, while wearing really soggy clothes that drag you down. My arms and legs get slow and stubborn, and moving quickly isn’t an option. My brain slows down, and concentration escapes me.  The tiredness goes into my bones- every part of me needs to rest and to sleep.  Fatigue robs me of my time. When I have made plans to do things, and I can’t physically get them done, it’s frustrating and upsetting. It robs me of my concentration; tasks that should come easily to me are foggy and harder to process. I push through as hard as I can while at work, to suffer the aftereffects when I get home that evening. Going to bed for a quick nap at 6pm can lead to sleeping through until the next morning. It robs me off my family; it’s not fun for my husband to have Sleeping Beauty snoring upstairs while he takes over all the household chores. Fatigue has also taught me to (try to) be patient and kind to myself. Fighting it too hard just makes it worse. It is better to give in sooner rather than later! So today, I had planned to go to Town. To have a nosey around the sales and see what was happening in the world. Instead I woke up tired, after a long night’s sleep and felt my entire body shout at me to stop. Slow down. Take a breath. Plans were quickly abandoned, and I spent the entire day in bed, sleeping and reading a bit and giving myself permission to just “be” rather than “do”. Tomorrow, I plan to get up, face the day and go for a stroll. MS might have a different day lined up for me. And that will be ok too!

    Author: Niamh McCarron - 14 Sep 2017

  • Photo for article: My MS Symptom – Balance

    My MS Symptom – Balance

    This week Declan Groeger channels his inner Ronan Keating! From roller coasters, to walls and walking, here’s his take on dealing with balance issues and never, ever, giving in.   There I was strolling along not really going anywhere, dawdling, wasting a bit of time when I suddenly wobbled and had to use a nearby wall for support. It was early afternoon and no drink was involved. I put the incident to one side, filed it away as a one-off and of no consequence but I was so wrong.  Compromised balance was one of my earlier symptoms and also one of the most noticeable. There are many other and far more significant symptoms but these are subjects for another day. I like a pint of lager or a glass of wine but I was never a heavy drinker but ‘MS Wobbles’, a.k.a. loss of balance, caused me to drink even less. I’m not drunk, I have MS. I am not sure when the ‘Furniture Crawl’ snuck into my life, but snuck in it did, without me really being aware until it was firmly entrenched. You know what I mean- holding on to the back of a chair for stability while walking, leaning against something solid or sitting down while having a conversation.   I loved the thrill of roller coasters, those long slow climbs and the huge short sharp drops. As a family we did them all - Alton Towers, Blackpool, Port Aventura and Euro Disney but roller coasters and MS don’t mix. Problems with balance are exacerbated by the high-speed twists and turns and steep drops and after my last ride it took so long to recover that I just decided that the thrill was no longer worth the pain. I miss roller coastering.  Balance is very important because without it you cannot stand and if you can’t stand you certainly can’t walk and without balance you will be likely to take a tumble. Falling is not good and it may have disastrous consequences. I have had a number of falls over the years but thankfully no really serious ones. I refuse to give up on walking although there are worse things than losing the ability to walk. This is where my stubborn streak shines at its brightest- I just will not give in. I use a rollator around the house and I use a wheelchair for longer trips.  Do I have any suggestions? I am not a physiotherapist or a gym instructor but I would advise everyone to protect their core strength. Exercise those trunk muscles. Sit up straight when you can – don’t slouch. Yoga is good. Exercising in a swimming pool, even if you can’t swim, is good. These exercises need not be strenuous but talk to your physiotherapist before doing anything new. What do you do?  Declan Don't forget to visit able2access.wordpress.com a blog about accessibility for the mobility impaired 

    Author: Declan Groeger - 07 Sep 2017

  • Photo for article: Fatigue and MS

    Fatigue and MS

    What is this MS ‘Fatigue’ people talk about and why does it get the blame for so much? This week from the MS & Me archives Emma Rogan takes a closer look at its affects, what remedies are available and how she manages her daily visitor  "A wake-up call doesn't come harsher than this!" I thought as I scraped myself off a Brussels pavement. Actually, there wasn't much in the way of 'clear thought' at all after I went crashing down. Following a day of training in the EU Commission I was on my way back to the office. I walked at a gentle pace- it was a bright sunny day with cherry blossoms festooning some of the nicer avenues with a flash of luscious pink. Blissful. Then, all of a sudden, I was sprawled across the cobbled street with knees torn up, bruised limbs and my papers strewn along the path. My toe had caught on the lip of an overly 'generous' cobblestone and instead of seeing it for what it was - a chronic case of bad pavement maintenance in European capital- I blamed myself. Back up a few steps and answer me this… have you ever fallen? Does your balance get a bit iffy sometimes? Is fatigue part of being iffy? What else could it be?  Knowing what fatigue is, recognising it and doing something about it are very different things. Statistics show that about 80% of people with MS deal with the effects of fatigue in their daily existence; 25% state that their activities were always or very often limited by fatigue. Medics are not sure what causes fatigue - theories include it could be brain atrophy, scars in the Central Nervous System, changes in grey matter. For some people it almost never goes away and has a monumental effect; they need to rest for extra hours, if not days, to recover from the exertions of daily life. For others there are different treatments that provide some help in offsetting the effects. These include a drug called modafinil, prescribed by healthcare professional or the more commonly available caffeine hit courtesy of such places as Insomnia and Starbucks. I admit, my imbibing of coffee was reaching epic proportions as I attempted to perk up my fatigued cognitive system with strong Americanos or the rare delicious-soya-mochas-with-a-couple of-sugars-thrown-in for that extra zing! They were delicious but the chemical crash wasn’t worth it. I am now strictly a ‘cup of tea for me’ woman. Emma’s Ease the Fatigue List Activity- Get out and about when you can. Stretch your limbs, twist your wrists and move what you can Rest- Don’t be a King Canute and try stopping the tide of fatigue. Go easy, rest and if you’ve noticed changes, talk with your MS Nurse/neurologist. Illness or fever can really be an issue so make sure you get checked out if you notice any change. Meditation- Mindfulness of the breath exercises ease your brain activity and are surprisingly liberating and effective. Books and online resources from Jon Kabat Zinn, Thich Nhat Hanh or a local Mindfulness course might even change your life. Be Kind- Firstly to yourself. MS isn’t your fault, nor are the symptoms. Once you’re operating on full reserves, then you can then give to others. Feelings of overwhelm, melancholy and stress (just can get your thinking calm?) add to the symptom and really need to be carefully watched. Please get help from a professional and contact the local MS Regional worker and find out if there’s anything available in your area. Now, after years battling with the tiredness I have negotiated a deal with my fatigue. I rest in the afternoon for 30 minutes with my favourite music/meditation track. It has been a difficult thing to learn but without it, my cognitive function gets extremely slow and my day almost turns on me as I battle indecision and exhaustion. There are other days when, from the moment I rise in the morning, I am exhausted. These are the very difficult, sad and lonely days when I do all I can to remember ‘this too shall pass’. As the days pass and injuries heal we must remember that not everything ‘bad’ that happens is because of MS or a symptom of MS or- Stop the Lights- might have absolutely no direct link to MS! However, when it comes to the scars on my knees and hands, they are from an accident caused by a series of unfortunate events. So are the brain and spinal cord scars that show up on the MRI.  Fatigue may be a symptom of MS that can totally mess up our lives and leave us flailing. But like dodgy paving and the scars that come from a fall, it’s about who to reach for after the fall that counts. Today, reach out to yourself and do something now that eases some of the scars left by your experiences of MS. Whether they’re physical, emotional or otherwise, they need to be recognised for the healing to begin. For updates and to take part in Emma’s ongoing adventures, please visit republicofemma.wordpress.com and join in the conversation on Twitter originally published April 2014

    Author: Emma Rogan - 31 Aug 2017

  • Photo for article: Choosing The Right Treatment

    Choosing The Right Treatment

    How do you make your decisions? We all know how being better informed means better decision-making but we don't always get the information we need. This week from the MS & Me archive series Joan Jordan talks about the importance of being well informed about MS drug treatments and medications. It might sound crazy what I’m about to say but I’m going to say it out loud anyway because it’s something I feel really strongly about. “Why can’t I see what MS Medications are available to me and compare them according to what I want from a drug?” There you go. Better out than in! All over the land- people are telling me this can’t happen but I say “Why not?” This is what I want: When I go to the supermarket to buy a loaf of bread, I can see what is available to me on the shelf. If I want to, I can compare Brennans with Pat the Baker by looking at the amount of calories, fat, saturates, sugar and salt per portion. The traffic light system means that I know that green is good for me, red is bad and orange is somewhere in the middle. I can also see the price of each pan and compare per unit. Based on this information, I can make an informed decision on which bread to buy on a particular day. Now, the things I look for in a medication are:  Efficacy- for my type of MS, will I have less relapses if I take it? Safety- does it come from a reputable source? Quality- do I trust it? Benefit-risk- will it do me more good than harm? Why can’t I compare these requirements in a simple way when I am considering which MS drug to take? I’m sure that neurologists are sick to the back teeth of being told by patients that they have read about a wonder drug on the internet when the drug is not suitable for prescription in their case. An equal frustration for patients is when a new, suitable drug is not yet available to them as the approval process has not yet been completed (or may never be). The BBC Panorama programme “Can You Stop My Multiple Sclerosis?” on Stem Cell transplants in the U.K springs to mind here.  I know that everyone has personal preferences when it comes to choosing a medication. For me- side effects are really important as I have kids and want to be as well as I can for their shenanigans. Cost doesn’t come into it so much in Ireland because of the Long Term Illness Scheme but I can see how it would be a major issue if I had to pay for my medication myself. I am eternally grateful to the Irish Government for this legislation! In her blog on Medication and MS my friend Niamh Mc Carron suggested a second consultation and I think that would be a really good start to help me make a more informed decision. Sin é! Short blog but it’s something I wanted to say. Do you find you get confused when comparing MS therapies? Do you wonder why you did or didn’t get offered a particular drug? Are you waiting for a suitable one to be approved? What would you LIKE to see to help you come to your best choice? I would love to hear from you! Thanks for listening.  

    Author: Joan Jordan - 24 Aug 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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