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

  • Photo for article: Christmas with MS

    Christmas with MS

    In this week's MS and Me blog Joan looks at big hetic life events like Christmas when you have MS. She said 'This is not meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too' Without a doubt, the best Christmas I have had with MS was the year we unexpectedly got snowed in. Thankfully, we had enough heating oil and food in the freezer to keep us warm and fed but all the trimmings went up the chimney. I didn’t get to queue for hours in the cold to see the Big Man in the Red Suit. I didn’t get to trawl the shops to find a donkey costume (for the school nativity play- not me!). I didn’t get to sing carols and wear a paper hat while wedged into a restaurant for second sittings. The highlight was that I didn’t get a telephone-book-sized credit card bill in January. I DID get to play marathon games of Scrabble with the kids. I got to laze in front of the fire and watch mediocre TV for guilt-free days. I got to build snowmen, snow-dogs, snow-aliens. I got to invent questionable meals from the slim pickings we had left in the fridge. I got to wonder why I was putting myself under so much pressure the years when the roads were clear. Big life events and holidays can be difficult when you have MS. Weddings, funerals, birthdays, Christmas… The times when you need to be “on” for a long time. Or maybe you feel that you are expected to be “on”.  No matter how you wrap it up, being ill sucks when you want to have fun like the other kids. I do use the “buy now, pay later” approach sometimes but boy, do you pay! I read Simon Fitzmaurice’s book “It’s Not Yet Dark” during the year about how he lives his life with Motor Neuron disease. He writes about “being a person- not a disease”. He says that “it’s not about how long you live but about how you live”. What wise words!  There is a distinct possibility that I might not be as mobile next Christmas, so I want to “tear the arse” out of it while I can. To do everything on offer, in case I can’t next year. To tick a few things off the bucket list. The pressure can be overwhelming and a lot of it comes from within. I think I get a bit mixed up between quantity and quality. Christmas can be a happy time when you are in a happy place. It can also be a very sad time when we mull over the year’s lousy events. I feel sad when I look around and see friends of mine (yes, REAL PEOPLE WITH REAL FEELINGS!) who have declined during the year because of MS. When we plan something but it doesn’t happen because of MS. When somebody I like can’t afford to buy bread and milk because they need to buy drugs for their MS. But this wasn’t meant to be a sad blog. It’s about admitting that stuff happens during the year but lots of amazing, wonderful and unexpected things happen too. The year we got snowed in, we had a stripped down Christmas. Board games, ghost stories and snowball fights replaced the bright lights of Santa’s Grotto. The Grinch was talking sense when he remarked that “maybe Christmas doesn’t come from a store”….. Here’s wishing you and yours a Merry Christmas: full of triple word scores, selection boxes and “Only Fools and Horses” marathons! Be good to yourself and do what you can. Say “YES” to life for what it is. Have you any tips on how to cope with Christmas and MS?

    Author: Joan Jordan - 18 Dec 2014

  • Photo for article: Sleep vs Rest

    Sleep vs Rest

    'I go to bed tired, I wake tired, I slog through the day tired…' Trevis Gleason explores the difference between sleep and rest'. The View From Here: Opinions on a Life with MS There are many things in the coming weeks that will wear down even the heartiest of minds and bodies. Shopping, cooking, decorating, celebrating are all a wonderful part of this joyous season but can leave a ‘healthy’ person knackered. As I pull myself to my laptop to type this, I have to wonder how a person with MS can make it through. There are many barriers to a restful sleep when multiple sclerosis is the diagnosis. Restless muscles can keep us from falling to sleep. Overactive bladder can wake us during the night. What I call “MS Sleep” has signals bouncing around my brain trying to find a path around damage. Even the medications we use to cope with MS can have side-effects that mess with sleep. It’s no wonder we feel tired after a full night in bed. So, there can be sleep without rest. What about rest and sleep? I often find the mid-day kip a requirement. I sometimes find that simply giving myself twenty or thirty minutes of quiet silence can be just as restful (here are 10 tips for a quality mid-day rest). Like so much else when it comes to living with MS; we must each find our way around this personal experience. We all likely tire of hearing, “Oh, I get tired too” or some such from people who are trying to a) (we hope) empathize or b) (we often experience) shame us into doing more than we can. The fact is that our brains may take six-times more energy to get signals to our body than a person without MS. Yes, they may get tired, but not like this… There is not a magic wand to wave and give us restful sleep and medications for sleep can vary in effectiveness and can be habit-forming. The best practice is to find a method of sleep hygiene that works for you and works most of the time. I’ve found that nothing is 100% when it comes to living with MS.   Maybe a restful night’s sleep should be in my letter to Santa! I wish you all the happiest of Christmas seasons this year and raise a glass to being one year closer to a cure. 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

    Author: Trevis Gleason - 11 Dec 2014

  • Photo for article:  Bladder Dysfunction

    Bladder Dysfunction

    There’s something about bodily functions dysfunctioning that strikes fear into all of us. Bladder and bowel control are one of the earliest things we learn as a toddler. They’re possibly one of the last things to go if we get very, very old or ill. In the middle of all that are people desperately hiding bladder or bowel problems while trying to look normal. Some are left with dodgy waterworks after a traumatic birth, or men can experience prostate problems as they get older. It’s estimated that over 300,000 Irish adults experience overactive bladder problems.  Unfortunately for us MS’er’s 80% of us are likely to develop bladder dysfunction. There’s a lucky 20% who don’t! This can be from the mild side of things like going too often (frequency) or having a very short time to make it to the toilet (urgency), needing to wee at night (nocturia), or it can mean needing to use a catheter to empty your bladder properly. If you do need to use a catheter it’s very practical and not as scary as the word sounds at all. Bladder issues can mean keeping an eye out for toilets everywhere you go, or getting frequent bladder infections, or getting up every hour, all night long, to go to the toilet.  Before you run away screaming, hands over your ears, let me tell you that there are solutions to most bladder problems. Thankfully it’s one of the more treatable symptoms of MS, although it can take some of us a bit of trial and error to find the right solution, the right medication or the right procedure for you. Nobody wants to know what goes on in my pants but I have to admit there have been long periods in my life when my bladder seemed to be getting more of my attention than anything else. It’s when it starts deciding you go 20 times a night that you know you have a major MS-bladder issue you need to sort out.  Like most MS symptoms I tried my normal approach of strong denial at first, determined that I could brave the problem out. All that happened was I ended up with severe sleep deprivation and a rising sense of burnout. I tried not drinking anything after 5pm and avoiding caffeine, but there was no change. I tried 4 different bladder medications in turn, but none worked. Eventually I was scheduled to get an injection of botox into the bladder to calm down the overactive signals of urgency. I didn’t care what happened at this stage, so desperate was I for a decent sleep! But by pure accident when I was put on a new medication for nerve pain, and noticed I was sleeping through the night, that I realised one of the negative side effects of the medication was actually a very positive side effect for me!  So if your bladder is holding you hostage and dictating what you can or can’t do, consider talking to your MS Nurse, GP or Neurologist. They have heard and seen it all before and may be able to help.  Resources MS Ireland - Bladder and Bowel MS Trust - Bladder National MS Society - Bladder Dysfunction WebMD - Bladder Control Problems

    Author: Helen Farrell - 04 Dec 2014

  • Photo for article: Mammy Come Out to Play

    Mammy Come Out to Play

    Writing blog posts for the 'MS and Me' website usually cost me nothing but my time and perhaps a bit of chipped nail varnish. This one has cost me hard cash. Let me explain. Given that I am writing about my children's understanding of their mother having Multiple Sclerosis for this blog, I decided that I should be rigorous in my approach and so, carry out some qualitative research and interview them.  The interview with my almost-seven-year-old twins went something like this... Me, serious interviewers face on, with red pointy lipstick, notebook and pen in hand... 'Mya and Leon, you know the way Mam writes stories about MS for a website sometimes?’ Two suspicious faces look at me, none too impressed, eyebrows raised, nodding.  'Can I interview you both and ask you what it is like to have a Mam with MS?’ Their joint response? 'No'. I adopt a sad face. ‘Please? Pretty please? You are such good kids. It would make me really happy'.  'NO Mam, it's boring'.  'I'll pay you. This is REALLY important'. My boy barters with me on their behalf. 'We want two paper monies Mam. Two fives'. 'TWO fives !!' I can see from their faces that they mean business.  'Okay, that's one five each. Not two fives each. Deal?’ A deal is struck. We sit around a table.  'Right guys, do you know what MS is?’ Two blank faces look back at me, smiling.  'Do you remember when I explained to you about the little cuts on Mammy's brain and how they can make her sick sometimes?’ There is a faint look of this sounding familiar, but they say nothing. I'm a bit disappointed. I thought that I did an excellent job with my child-friendly chats about MS.  'Why do you think I inject myself in the leg every week?' Now, the children look animated.  Leon puffs his chest out, 'When I had my injection in school last year, I didn't cry. Amy did. She wanted her Mammy'. Mya has a similar tale, saying that her injection didn't hurt, not even 'one single little bit'.  Mya reminds me that she always runs to get me tissues if my leg bleeds and rubs my thigh if it is particularly painful. She than recalls the sorry tale of when she fell over his bicycle and cut her knees earlier in the summer. I changed tack. 'What is it like for you two to have a Mam with MS?’ Mya asked me if I could cook some pasta. Leon threw his eyes up and said, 'oh man, this is SOOOOO boring and runs outside to play. Interview ceased, 17.35pm I've tried to reinstigate the conversation on a number of occasions. Each time, I've been met with similar sighs and groans. My conclusion? My perception of how my MS affects my children is very different than theirs. My children were three and a half when I was diagnosed with MS. Since that time, I have spent too much time feeling guilty about the fact that I don't always have as much energy for them as I would like. Bedtime stories not read, cakes not baked, unrealised art projects. Times when I cannot bear noise, light or touch and want to lie in a quiet, darkened room. Times when I have locked us all in the house, let them loose on the contents of the fridge, with the TV babysitting, while I slept. Reality check: I work full-time in a rewarding, but hectic job. I am 40 years young. I'm sure that other working mommas, who don't have MS, experience similar guilt.  My MS is pretty stable since my diagnosis, but from time to time, I do worry about my health in the longer term. I worry about what sort of mother I will be. Will I be able to provide for them until they are financially independent? My biggest dread is being a 'burden' on my children.  Generally though, I focus on the good stuff. Our shared 'joie de vivre'. Like my boy accompanying me on my runs. His aim: to make me a faster runner to win medals to give to him. My aim: to improve my fitness and help my overall wellbeing. Or my conversations on car journeys with my little girl, laughing our heads off and making pinkie promises to always be my best friend. Our day trips. The many parties and adventures with their friends. All children are adaptable. If anything, my medical condition has made my children more patient. If I have fatigue or feel low, both myself and the children can enjoy cuddles on the couch. They may have jam sandwiches for tea from time to time, but hey! They both like jam and strawberries are fruit... Maybe when my children are older, they will read this piece and contradict everything that I have written. They may talk about their damaged childhood. The missed opportunities. They might even sue me! But I'd like to think that they would say that they have empathy for other people and have an appreciation of little things. And no fear of needles.    POST SCRIPT: I've just read this out to my children, asking what they thought about it. Mya said she understands most of the words and smiles at me. She likes that I have said nice things about her. Leon said that it 'was to boring to listen' too. 

    Author: Lucina Russell - 27 Nov 2014

  • Photo for article: Am I Progressing?

    Am I Progressing?

    'Yes my MS is but I am not beaten into submission' Multiple Sclerosis is a peculiar illness. It has a myriad of signs and symptoms that affect everyone differently but a discussion of the range of signs and symptoms is for another day. There are three basic forms of MS; Relapsing Remitting MS (RRMS), Primary Progressive MS (PPMS) and Secondary Progressive MS (SPMS). The word ‘progressive’ appears in two of the three forms. To the average person progressive means a good thing; it means improving, getting better but in MS it is a bad thing, a very bad thing because it means the exact opposite to good it means that the things are progressing in a good way for MS but deteriorating for its host body and as with all things MS related the speed of deterioration will vary. Progression in MS terms means that things are not as good as they were and there is unlikely to be any ‘bounce back’ as happens in RRMS. I was diagnosed way back in 1988 and there is only one answer to the question “Am I progressing?” Yes I am. I was initially diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) and really I was OK(ish) for 10 -15 years. There were a number of relapses followed on by remissions. Unfortunately after each relapse there was less than 100% recovery. To try and explain it in numbers a relapse involves a drop from 100% to about 70% and then the remission means a recovery to about 90%. This then becomes the new 100% thus with each relapse a little is lost and never recovered. But back to the real question “Am I Progressing” no I am not but unfortunately my MS is. It is worming its way insidiously into my core and as of now there appears to be no way to put a stop to its gallop. I am at the stage now where Assistive Technology has become important in my life. That, in itself, is not such a bad thing. To get the best use of Assistive Technology the user must be ready for it, it must not be forced. 10 years ago I started using a wheelchair occasionally, now I use it much more. This year I bought an automatic car and started using a rollator.  Is my MS progressing? Yes it is but I am not beaten into submission. I would really prefer not to have MS and definitely prefer not to have a progressive form of MS, but such is life and it's breaks. Jack London once said “Life is not about holding good cards, but sometimes, playing a poor hand well.” I will use whatever Assistive Technology that becomes available to make my life easier while at the same time reducing the pressure on my family and friends. Don't forget to check out Looking forward to your comments... Declan

    Author: Declan Groeger - 20 Nov 2014

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