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

  • Photo for article: MS and the Lonely Hearts Club

    MS and the Lonely Hearts Club

    This week Lucina reflects on a ‘Lonely Hearts’ teenage prank, dating and life with MS. I’ll start with a confession. Something that has bothered me since the day I did it, as a teenager, about 25 years ago. It was of course, my mother’s fault. She had told me that as a young un herself, she had placed an advert in the ‘Lonely Hearts’ page in the magazine, Ireland’s Own. My mother, the butter-wouldn’t melt variety, did it for the devilment. So, I did the same. As far as I remember, in my ad, I described myself as a 65-year-old ‘Merry Widow’. I said that I had land with the much desired ‘road frontage’, with the potential to raise a few quid from selling sites for houses. My anonymity and young age were maintained by a PO Box number. A few weeks later, a packet full of letters arrived through the letter box. The one that struck me, and that causes me guilt, all these years later, was a letter from ‘Michael’. He wrote on heavy Basildon Bond pale blue note paper in delicate hand writing that suggested that he was an older man. His wife had died and he was looking for someone to go dancing with. The way it was written, I sensed that he was genuine and also, that he was lonely. Until then, I thought the whole thing was a big laugh. I wondered if I should write back to him and confess to my silly prank, or do nothing and leave him wondering. I chose the latter and hoped that he met someone nice. All these years later, I find myself, aged 42 and rather embarrassingly, newly single, with MS. And no road frontage for sale. I guess it’s way too late to jump back in the MS closet. I’ve been open about my diagnosis among friends, family and work colleagues right from the start. Later, I started to write about it, amongst other things, in rambling posts on Facebook. It appeared that people liked reading my tales and so I started writing a blog. A few newspaper articles later, the MS Society invited me to become part of their blog team. So, you could say that I’m firmly ‘out’, all bells and whistles. But I haven’t really reflected on the potential ripple effects of my disclosure. The modern equivalent of the Lonely Hearts column, on-line dating, makes me feel ill. I’m definitely not going there. Not yet anyway. If I did, I wouldn’t list my medical condition as my Unique Selling Point. I wouldn’t refer to it at all. But a quick Google of my name would reveal a lot.  Unless an auto-correct on an electronic device added an extra ‘D’ to my forename. Then a potential suitor could think that I am the well-known horse trainer, Lucinda Russell. That confusion wouldn’t last long though. All I know about horses is that I should slow down when I approach them in the car on the Curragh.   I wonder, if someone was looking for a long term companion, would my having MS mean that I could be dismissed at the outset?Or worse again, could someone be attracted to me because of my condition and try to take me on as a project, to help me, or worse still, fix me. I don’t know which option sounds worse!   Depending on which blog a potential Romeo might read, he may think I’m an inspirational young (ish) woman, or someone whose illness has taken over her life. I feel like I should put a disclaimer on all of my blog posts telling the reader that my MS symptoms aren’t as bad as I’ve suggested, that I exaggerate my fatigue for effect and that I’m actually great craic (Sure aren’t my blogs a hoot?). I’d point out that I can cook and I’ll be the proud owner of an acre someday (once the small matter of the mortgage is sorted). If I was being REALLY truthful though, I’d say that I’d just like to meet someone to occasionally pick me up in a nice guna and bring me out to dinner. Skills in clearing septic tanks and unblocking chimneys would be highly desirable.  If he wanted to ask me about having MS, I’d refer him to my blog.   It’s highly unlikely that poor Michael who replied to my Lonely Hearts advert is still alive. But if he was, I’d tell him that I am truly sorry. Karma has come back to bite me. Last laugh to you sir. 

    Author: Lucina Russell - 21 Jul 2016

  • Photo for article: How I'll Adapt My Summer Holidays

    How I'll Adapt My Summer 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.

    Author: Niamh McCarron - 14 Jul 2016

  • Photo for article: When MS Seems Like More Than I Can Handle

    When MS Seems Like More Than I Can Handle

    'Coping with MS isn’t always easy, but you do have a choice' Life… Clichéd as it seems, dealing with life is what strong people do, right? You put on your army gear, ramp up the volume of your favourite tunes and tell life to get out of the way because you’ve got things to do. Having MS can sometimes feel like fighting in open trenches, also. Towards the end of 2004, I started experiencing optic neuritis and extreme fatigue. Six months later I was diagnosed with MS, by then I had gone through such an extensive list of emotions and events that at times, it seemed as if there weren’t enough words that could describe MS’s impact on my life. Fast forward to 2016, and while my ability to understand the emotions around having MS has been a fast learning curve not just for me but for my family and friends also, MS itself continues to throw the occasional spanner in the works. Trigeminal neuralgia (or facial nerve pain) returned around 2011/2012 with something that resembled vengeance, a vengeance unwilling to listen to alternatives. I can live with normal neuropathic pain but optic neuritis and trigeminal neuralgia (TN) makes me trip up because I am an intensely visual being as I thrive on using – or abusing - my eyes in every way possible. Throughout my life I’ve had my eyes firmly fixed on letters, words and sentences, so I read anything from milk cartons to James Joyce’s Ulysses, or I write poems or parts of books into notebooks. I also let my eyes use and abuse anything from watching grass grow, staring at paintings by Caravaggio or other art wherever and whenever possible. In short: losing my eyesight because of MS scares me a thousand times more than the possibility of being in a wheelchair. That is when MS seems like more than I can handle. Having to explain what optic neuritis feels like to people who don’t know that an eye can hurt is one thing; having to explain how easily facial pain can be set off is another story altogether. I have seen many raised eyebrows when trying to do both and have often despaired at the lack of understanding, or the “Oh; it’s probably not that bad!” Especially with trigeminal neuralgia, talking, laughing, smiling, eating, brushing teeth, a whiff of cold air, a light touch of my fingers on my face or tears rolling over my cheeks can lead to an extremely painful stabbing sensation but yet it sounds implausible to many. Knowing that the older I get, the more TN will be present in my life, a future better not thought off. And that is also when MS seems like more than I can handle.  Because of the type of neuropathy, I often feel abnormal under its pain. While I do know my MS inside out, I don’t always want to share its nastiness. We all agonise in our own distinct way and my perception of my illness is my own reality. In that mind frame, I do what I can to get through life as unscathed as possible, without making mountains out of molehills. Because of the severity of TN or ON, it’s often difficult not to think about its shooting, burning and lasting pain because it interferes in every aspect of life. However, I have learned to sail around different pain patterns by identifying it is there, while refusing to give it my full attention.  When I consider that MS sometimes seems like an upwards battle, I tell myself that I have a choice. It’s about choosing what kind of influences I want to occupy my mind. Do I want to feed my mind negativity, or do I choose positivity no matter how hard it might be? In fact, my unsung heroes are all those with chronic or terminal illnesses who take ownership of their life as well as their illnesses. They create positivity out of negativity, step out in the sun each day, smile despite their pain or setbacks or despite the time they have left. Life with MS can often be a proverbial pain in the backside, but when I think of those people, I know I made the right choice… Choosing positivity and knowing that  pain is temporary, but giving up is forever. Willeke If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter

    Author: Willeke Van Eeckhoutte - 07 Jul 2016

  • Photo for article: My MS Passion:Knowledge is Power

    My MS Passion:Knowledge is Power

    Blogger Trevis Gleason shares the passionate ‘meal’ he’s made from the information he’s learnt about living with MS. When our group of MS & Me bloggers all met in the same room for the first time last December, we talked about a lot of things… A lot! Many of those things thankfully, had nothing to do with multiple sclerosis at all. You see we’re normal, healthy people who have lives, loves, interests and passions just like everyone else. Healthy people with MS. This idea of passions really struck, so we decided to open a monthly series of blogs dealing with the subject. Not just passions in everyday life – as these are very passionate people – but how our passions have been affected by MS and how our life with multiple sclerosis is changed by those passions. I’m a head-before-heart guy, myself. I dived right into the information side of the disease before I could get a handle on the living with MS part. It doesn’t work for everyone (and many – former wife included – might say that it didn’t work all that well for me) but whether first, last or during I believe fully that information, thus knowledge of MS is power. I dug and dug – online, in medical libraries, at doctors’ offices, friends-of-friends – for information about MS. Information is one thing but what I really sought without knowing it was knowledge. The difference between information and knowledge is, to the chef in me, like the difference between a trolley full of groceries and a fully cooked meal. One is ingredients, the other is put through its paces in order to be of some proper use. But use to whom? That’s where the term “Knowledge is Power” takes a bit of a change for me. Knowledge is, indeed, power but power only for one.  The information that I gained and turned into useful knowledge for myself only served me and those nearest to me. That is one of the reasons I began writing the Life with MS blog over 10 years ago. To share the knowledge I’d gained. Then I came to truly understand; information is fuel, knowledge is power, but only when the power is shared does it become ‘energy’. MS Ireland saw this three years ago as the final touches were put on the launch of MS & Me. My fellow bloggers understood it as they lined out to bare their souls to you on a weekly basis, so that our broader community might benefit from the technical information they’d turned into personal knowledge. The Japanese word for teacher is ‘Sensei’ which literally translates to “person born before another”, but generally is accepted as ‘one who has gone before’.  We all learn from those who have gone down the many labyrinth paths of multiple sclerosis. We gain our own knowledge along the way.  If we choose to share that knowledge – that Power – with others on the journey the power becomes energy to be passed on to the next and to the next. Knowledge, milled from the information I’ve mined over the years has helped me to live my best possible life with multiple sclerosis. My passion is passing that knowledge along so that its energy might empower others the way my fellow bloggers empower me.  Wishing you and your family the best of health. Cheers Trevis You can also follow us via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 30 Jun 2016

  • Photo for article: Is My MS Progressing?

    Is My MS Progressing?

    I hate seeing documentaries or movies about tornadoes; they absolutely terrify me. There’s a recurring nightmare I have of being caught in a barren landscape at dusk, howling tornadoes circling the scene. Terror takes over with the thought of what is to come. I don’t have to delve very deep to know it is my fear of MS. MS progression to put my finger on it, lurking in the shadows of my mind, surfacing every now and then at night. It is always at night that our fears naturally become magnified but I also have many happy dreams where I am a young, physically strong 25-year-old again, totally MS-free for that short time while dreaming. When I wake up I feel quite cheated to find I’m 43, with MS! Our bodies never forget what was normal was, pre-MS, all those years ago. Our new “normal” states never feel quite right, and the dissonance of symptoms causes a sense of disquiet within us.  This discord between our bodies and mind increases, the less control you have over your MS. When I was younger I kept imagining I’d slipped into progressive MS, because symptoms did not go away between relapses, and kept adding up over time. In the 18 years I’ve had MS I’ve been told I have Relapsing-Remitting MS (RRMS), Benign MS (do neurologists even believe in this category anymore?) and worsening RRMS. I dreaded hearing that it might have become progressive because for me that meant a loss of any traces of control I had over how my MS behaved, and I still dread hearing it. I know some people with MS progress very slowly and it’s not necessarily a rapid decline for all, but still it’s a club I don’t want to join. With the newer medications that we are all lucky enough to have access to these days, there is the chance that we will delay our possible move to progression.  When I was first diagnosed time moved by very slowly. I was really scared and watched my every symptom with fear for signs that this was my MS starting to progress. An MS-friend had told me that it takes 10 years to adjust and I didn’t quite believe her, but I think she was correct in hindsight. I went through bad patches, bad years, bad months, good patches, good months, but when you can’t control something it’s difficult to put it out of your mind. Over time I suppose I got sick of analysing the significance of every symptom that appeared and I settled into a kind of reluctant truce with my MS. If I kept up the kind of intense scrutiny that I had at first I would have completely burnt out and driven all my friends away too.  Weirdly, although tornadoes are extremely rare in Ireland, I came quite close to a funnel cloud, a type of proto-tornado, many years ago. I was working on an excavation down the country as an archaeologist in my pre-MS years, and during that August the peculiar kind of still, heavy weather gave way to great storm clouds. To our shock a grey finger poked down a few miles away, and elongated to reach lower, but didn’t quite touch the ground. Maybe that is what I have moved on to; progression hasn’t made landfall yet, so I’ll put the panic about the future on hold. 

    Author: Helen Farrell - 23 Jun 2016

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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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