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

  • Photo for article: My MS Symptom - Hearing Loss

    My MS Symptom - Hearing Loss

    Hearing loss, or impaired hearing, is an uncommon symptom of MS, Helen Farrell discusses the affect it has on her daily life. There was a documentary on Lauren Bacall, actor, on television that morning, the movie star of Hollywood’s golden age. I had a virus, or so I thought, and I was taking antibiotics and feeling off-balance. It was nice to have the flat to myself and watch some tv biographies while my flatmates were at work. Suddenly, I realised I must be sitting on the remote control, as Bacall’s smooth voice trailed off into quietness. But how peculiar! The remote was beside me, and I wasn’t sitting on the volume button after all. Darts of fear shot through my stomach as I realised that the television was fine, it was the hearing in my right ear that wasn’t. In those 10 seconds, it disappeared totally, never to return.  Two hours later I found I was unable to walk in a straight line or make it down the stairs, and I really started to panic in earnest. I thought I might have had a stroke. A hospital admission, an MRI and two lumbar punctures later, and I was told I had MS; that was 19 years ago.  1 in 1,000 of us in Ireland will be diagnosed with MS, but it is “exceedingly rare” to have permanent deafness from MS. Yep, I feel so goddamn special. Deafness often goes together with tinnitus, a roaring, grating, rushing noise constantly roaring in my deaf ear, but I don’t notice it any more. It’s amazing what we can adapt to and accept as normal. Another MS-friend has tinnitus too, but no deafness, so having tinnitus doesn’t necessarily mean you’re going to lose your hearing. A friend-of-a-friend with MS lost her hearing in one ear for six months, and then one day her full hearing returned. In fact, it’s far more likely that even if you lose your hearing that it will return, when you’ve MS. My case is not a common one. I believed for a long time that that my hearing would return too, but I eventually accepted that it was gone for good, or until they find “the cure”.  To use a hearing-aid you must have some residual hearing. I have nothing, unless it’s over 80 decibels (like a loud motorbike) so a hearing aid would be useless to me. The neurologist and audiologist tried to locate the lesion that was causing the deafness, but they couldn’t pinpoint it. Because the sudden deafness happened during a severe MS-relapse, it’s nearly certain that MS caused it. I had severe balance problems during that relapse too, so it’s likely that a lesion in the brainstem caused both issues.  I have become very protective of my remaining hearing. Previously I loved live gigs and concerts, loud music on my headphones, but now even a trip to the cinema has me bringing a soft earplug (you only need one when you’re unilaterally deaf!) to protect my good ear.  It must be admitted that there are some small benefits. One deaf ear is very handy for cutting out chatter in the open plan, being able to make a call in a noisy setting, or rolling over onto your good side to get a peaceful sleep. I can also understand people in noisy places better than most, as I rely on lip-reading a lot in these kinds of places. One-to-one, I don’t encounter any issues with hearing people; it’s background noise that can make it challenging.  With only one ear hearing, you can’t locate the direction of sounds; it all sounds like it’s coming from the left! I’d a funny episode with a very crotchety oul’ wan in Arnotts a few years ago, while waiting for the lingerie changing-rooms. I eventually realised this half-clothed older lady in one of the cubicles was frantically hailing me to ask me to call the shop assistant back. She must have tried a few times to get my attention before I’d responded because she grumpily spat out “are you deaf, or what?”. I smiled and said pleasantly, “I am actually; deaf as a post in my right ear”. The look of mortification on her face was very amusing!  All joking aside, deafness is a serious issue to deal with, as is any loss in a functional system. In the past I used to dread the frequent relapses that rolled in every few months; you never knew what you’d lose each time. With the newer MS medications that are now available, I don’t worry about relapses any more. My MS has reached a level of stability I never thought possible. Maybe, in time, and with new discoveries yet to be made, we can even start fixing things that got broken along the way.  More Information:  Hearing Loss, NMSS Hearing Problems, MS Trust How to Look After Your Hearing, HSE 10 Tips For Looking After Your Hearing 

    Author: Helen Farrell - 19 Oct 2017

  • Photo for article: Calling All Writers

    Calling All Writers

    Have you got something to say about what your life is like living with MS in Ireland? Will you share it with the world? This is your opportunity to get more involved with MS Ireland as well as showing us your glorious gifts of expression! In 2018 our award-winning blog is being revamped. We are seeking writers who have a passion for sharing their thoughts, getting to the point and who want to get involved with MS and Me Blog in 2018.  Since 2012 the MS and Me Blog has been an online space for people to share their stories of living with MS. The Blog has become a vital information source for the MS community in Ireland and further afield. With updates every week, the Blog has become part of many people’s weekly reading and is a way to connect with other people with MS. The current group of bloggers have shared their tales of triumph, told the world how they’ve dealt with disappointment, how they maximise the good things in life, learned to deal with the symptoms, celebrated the benefits of being part of a community, the fall-out from diagnosis and treatment and the joys that come from lives well lived.  We want more people to get involved and write for the MS and Me Blog and are calling for people with MS and others from the MS community in Ireland (including carers, health care professionals, partners of people with MS) to take part in the MS and Me Blog.  Does this sound like you? Write to us, tell us who you are, where you’re from, what age you are and your connection with the MS Community. You’ll also need to send us:  One 500-word piece about MS A Letter of Motivation as to why you want to take part Send your work to (with MS and Me Blog in the subject line) by the 9th November 2017. We will be in contact with everyone who submits their pieces on time. If you have any questions, please email us or get in contact on Facebook or Twitter. The MS and Me Blog Editorial Team

    Author: MS and Me Blog Editorial Team - 12 Oct 2017

  • Photo for article: My MS Symptom - Trigeminal Neuralgia

    My MS Symptom - Trigeminal Neuralgia

    This week Willeke Van Eeckhoutte talks about Trigeminal Neuralgia and the implications it has for her daily life. Bear with me, please. I need to get something off my chest. Or rather, my face. I bet we can all remember the first time we went to the dentist. I know, not the nicest of memories. The needle. The pain. The sound of the drill. The rubbery feeling in your chin or cheek afterwards. Now, multiply the latter sensation times, let’s say, by 100.  Welcome to the other side of trigeminal neuralgia (TN). The side where stabbing, shooting pain is not present, yet the numb, dull, throbbing sensation are. It is also burning like fire.  TN sounds like a mouthful. It turns out; it is a mouthful. You can’t talk without sounding like you’re drunk on two bottles of whiskey. You also can’t talk during severe attacks, often making you yelp between words. Added to this, forget about not spilling at least half your cup of coffee, or worse, your other favourite drink: milk. As it turns out, the rubber sensation is perhaps not as painful as the stabbing version of trigeminal neuralgia, but it is enough to keep you awake just as much.  Oh, the joys of facial pain. Thank you, multiple sclerosis. I wish you would just bugger off and let me have my sleep. The last time I slept like a baby was 13 years ago. I cannot even remember what 8 hours of sleep feels like.  Worse, I cannot remember what being healthy feels like.  MS has been an odd, long journey. Contrary to what my neurologist and I now know to be fact, I started with excruciating left side facial pain combined with extreme fatigue. For the first three years post-diagnosis, registrars attributed the round-the-eye facial pain to optic neuritis and migraine.  Despite my continued remarks that it felt different to those symptoms, they seemed happy enough with the ON tag. It took some time and a master-neurologist to bluntly shoot down the ON theory and put TN on the map. I felt vindicated. I felt that finally, I was on the road to recovery from pain so awful, you cannot stand the slightest of changes to your environment and as such, seemed to turn into a rather antisocial human being. I was even happier when facial pain disappeared altogether, just like that. No tagline saying, “Hey, I know you hate me, so I will vanish just to please you!” Without any warning, TN resurfaced years later.  And is still here today. On any given day, pain, touch, temperatures or vibration can trigger a TN attack. Talking, smiling, brushing my teeth or a whiff of cold air can trigger an attack. Vibrations caused by walking or music as well as sudden loud sounds like banging doors, coughing or sneezing… same. Quite often, waking up with the left side of my face resting on the pillow is the culprit. There are so many triggers that listing them all would scare people.  In short, I have my hands full with my face. Twelve years with MS and TN have taught me that in fact, I can give TN the middle finger approximately 50% of the time. Out of necessity, I’ve learned what the triggers are and have had to adapt thought patterns.  I won’t lie. On days where facial pain takes over, I curse it for all eternity. TN is a drag. A cause of a less active social life. Lower quality of life. Loss of friends, even family members who don’t accept and refuse to see how bad facial pain symptoms can be.  Just last week, I wanted to run from the shop during my grocery trip because children were screaming. I love children, but I prefer them when they come with some form of a sound suppressor. Or, with parents who ask their children to behave in a shop. Also, smiling is troublesome. Pictures of me with a big smile are rare these days, and while I look angry, I am not. I am simply in pain, heavily medicated and so afraid of another round of shooting or burning pain. I still have mischief in mind; it is just not translated to my facial nerves anymore.  But, I refuse to consider nerve pain a deal breaker. I soldier on. There’s no other way but to soldier on as best as I can. On days when MS and TN are just too much to handle, however, I fear its pain and pray I won’t let people down. I am aware that I cancel plans more than others would, but I’m blessed with a supportive MS society, friends and remaining family members who do understand the pitfalls of excruciating stabbing pain like trigeminal neuralgia. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 05 Oct 2017

  • Photo for article: Highlights from Annual MS Conference

    Highlights from Annual MS Conference

    This week Niamh McCarron recaps on the 2017 annual MS conference in Sligo. On Saturday 23rd of September, MS Ireland held their annual conference in the Radisson Blu Hotel in Sligo. The theme of the day was “Quality of Life and its Relationship with MS”, and attendees were treated to a range of topics relating to living well with MS. I reckon a lot of us put our own needs way down to the bottom of the priority list -  after kids, and housework, and jobs, there is little time left over. It can feel indulgent and superficial, but it’s so important to take a breather when we can. I am so guilty of this myself, there is always something to do, but I headed off to the conference, ready to learn more. The conference was also live streamed, making the talks accessible to people far and wide.  First up... Dr Orla Gray, Consultant Neurologist, Ulster Hospital, “MS Treatments & Management in Improving Quality of Life” Dr Gray spoke about what MS is, how it manifests and how its management has changed. She explained how early diagnosis and treatment can really help us to keep well for longer. I love listening to talks by neurologists, and seeing the science behind MS. I don’t understand much of it, but I love hearing the perspectives of people who dedicate their careers to research and treatments.  Dr. Sinead Hynes, Occupational Therapy Dept, NUIG “Cognition and MS”  I was very interested in hearing Sinead explain the importance of our cognitive function and MS. MS can impact our ability to remember, to follow a conversation, to learn new things. Many of my MS friends have had the dreaded “Cog Fog” -  where our brains just don’t seem to connect. Sometimes it’s hard to remember the correct word, or how to do a task.  Sinead gave us great tips like using apps to record dates and appointments, and being aware and mindful of how we are feeling. Taking time early on to have a “Brain Break”, can prevent total cognitive fatigue later. Dr. Deirdre Corby, DCU School of Nursing, “Evidence Supporting Assistive Technology” Deirdre spoke about how assistive technology can impact on someone’s quality of life, helping them to maintain their independence. Her presentation made me more aware of the assistive technology available, and how it can help people with MS. For example, I didn’t realise assistive technology doesn’t have to be electronic or computerised, it can be something simple like a gripper on your keys.  Small things, that make a big difference! William Ryan, Continence Advisor, “Bladder Management” William gave a great talk on how the bladder works. Lots of people with MS have bladder problems, like the need to go to the bathroom frequently, or unexpectedly.  Other people don’t have the ability to fully empty their bladder, which can lead to infections. Some people have both! William was so positive, in discussing what can be an isolating, embarrassing and uncomfortable issue.  Attendees also kindly shared their stories about learning how to self-catheterise, which has given them back their independence. Mary Anada Shakti, “Laughter Yoga” Fellow blogger Joan went to Mary’s Laughter Yoga group, and had a ball! When I spoke to her and other attendees later, they all said how much they enjoyed it. Mary got the group to sit in a circle to do silly things. They did a lot of laughing and interacted with each other physically. Joan reported sore cheeks from laughing and that she went in feeling a 4 and came out feeling a 10!  Dympna McNamee, Social Worker, “Strategies to Manage Change” After lunch, all the groups came together again to listen to Dympna’s talk on mindfulness and meditation. I admit that I find it hard to switch off, and at home I definitely don’t take time to sit quietly and relax. However, Dympna’s advice on how to be mindful included tips on doing small bits throughout the day, which didn’t sound too daunting! I haven’t done it yet… but I will… I promise! I went to the conference on Saturday hoping to pick up some tips, but the reality was so much more. I came away feeling determined to look after myself better, and that it is OK to put day-to-day chores aside and to rest and refresh ourselves. I’ve tried to summarise the content from each talk, but I’d really encourage you to spend some time watching the presentations. The videos from the conference are available here

    Author: Niamh McCarron - 28 Sep 2017

  • 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

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