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

  • Photo for article: Parenting and MS

    Parenting and MS

    I didn’t know that I had MS when I had my kids. I have an eight year old boy and a ten year old girl. Post diagnosis - I decided not to have any more children for many reasons. I won’t go into them today. That’s another blog entirely. I DO want to share a few tips with you about parenting and MS. Things I have learned the hard way. Things I wish I had been told on day one! Firstly, it’s really important to be honest with your kids when you have MS. They understand more than you think. They can get the wrong end of the stick if you don’t give them the age appropriate facts on how your illness affects your life. You don’t have to do this alone. My local support group gave me a brilliant book called “My Mom Has MS and She's Still the Best” which I included in the bedtime routine. The MS Readathon is also a wonderful way to educate your little ones and their friends. The aim is that it will become normal to your kids that MS is a part of your family life. Every once in a while, I ask the kids how they feel about my MS. I want to make sure that the door is left open if they ever want to talk. So far, I have only received responses like “Not really…. Can I have an ice-cream when I finish my tea?” but they know that I am there if there IS anything on their minds. I think that sometimes we don’t give children as much credit as they are due. I have had (albeit undiagnosed) MS symptoms for as long as I have had a family. They know I have to take my meds, that sometimes I have to cancel plans and that I can’t walk too fast. They have accepted these facts a lot quicker than I did!  The next thing is that if you are a parent with MS, it’s really important to always have a backup. Plan B can often turn into Plan C when you have an unpredictable, chronic illness. It’s critical to have support networks in place so you can strike a balance between having a family life and MS. If I need to spend unplanned time in the hospital due to a relapse, it’s important that my children know what’s going on. I would hate for them to feel scared or that they don’t matter. Have a drill prepared so that things go as smoothly as they possibly can. Make sure you accept constructive help- otherwise you will be left to do it all on your own. I used to panic about things that COULD happen to me. “How would I manage if I could no longer take care of my kids?” “What if my husband decided that he hadn’t signed up for this and left us?” “What if my kids felt ashamed that their Mam has MS?” None of these things have happened and I decided to banish these negative, destructive thoughts. I try to look on the positive side and enjoy the extra time I now have to watch my family grow up. My last piece of advice is to find some friends in a similar situation. People you can compare notes with, have a laugh with and talk through the tough times. People with MS know what it’s like to have MS and parents know what it’s like to have kids - so a fellow parent with MS should get where you are coming from. I asked Karen, a Mammy with MS I know, to read through this blog to make sure I was representing what it’s like at the coalface. Keeping it real - so to speak. Having children is hard. It’s hard for everyone. It’s also incredibly rewarding and I don’t regret a second. I hope that I have given my kids the right information at the right time to help them understand my MS. The regional MS Ireland office in the North-East holds a weekend for teenagers where they get a chance to talk to their peers about having a parent with MS. How great is that? Please remember that you are not alone if you are struggling to find a balance between MS and parenting. Find a kindred spirit you can relate to and enjoy the precious moments with your little ones. 

    Author: Joan Jordan - 01 Oct 2015

  • Photo for article:  Fertility and Pregnancy Part 2

    Fertility and Pregnancy Part 2

    Last week Emma wrote about MS and the fertility and pregnancy journey. This week she delves deeper into the joys and challenges of having a new-born in her life.  One of my exes told me when we broke up that she pitied me- no-one would want to be with anyone with MS. For a long time, that got under my skin and I believed her, there was no choice. Then I met Cathy and everything changed. We romanced, fell in love and started planning for a child. We did it the typical lesbian way- clinic, donor and with medical intervention. Last September, she got pregnant and we’ve had a rollercoaster of a year. It was a good pregnancy, healthy, not too much sickness and with so many happy times. The months passed with scans of the baby growing, consultant visits and the waiting… and waiting.  Then the 16th of May in the early hours of a quiet Sunday morning, our baby girl arrived. Cathy stayed in hospital for three nights, learning how to breastfeed, resting and getting to know the new arrival. I prepared our home, hardly sleeping as the two loves of my life slept in a hospital across town. On a bright sunny morning, I drove to the hospital. We nervously put Baby into her snow-suit, packed the car seat and drove them home.  Cathy would say pregnancy is easy. It is when baby comes home that you will never be prepared for. My friend described becoming a parent, having a new-born in the house, as the equivalent of throwing a grenade into a relationship. The explosions rip through what you thought you knew about yourself, your partner, your family and friends. Some relationships collapse, only to grow renewed and stronger, while others fall away. MS and children also collapse TIME; we’re forced to be present, to be in the moment, to mindfully breathe every breath. Time slows down and speeds up, all at once! As the first two hellish weeks fade in my memory, as my brain stops hurting from all new pathways built during those first few months of intensive learning, I see how MS was put to the back of my mind. My concerns faded as the jobs that needed to be done, got done. In the months since I’ve learned how to change a nappy in record time, how to interpret a baby’s cry, make the meals that are super nutritious and quick (or pop to the local fast food restaurant in desperation for a meal!), do the housework, be mindful, take rest when I could and make it to my TRX/Kettle bell class whenever I can.  Last Christmas we had the Rogan Nativity. It’s our tradition, when we meet for food and drinks and all my cousins, aunts and uncles dress up as shepherds, angels, Mary and Joseph and baby Jesus and the donkey. We play our parts while someone reads the Nativity story from the Bible. At the end of the fun, we give thanks for being together, gratitude for family, the universe we live in and for the gifts we have. It is also an opportunity to share news. This year I decided to share my happy news about the pregnancy, only I got overwhelmed and upset. Eventually, I blurted out the news. There was stillness…then an eruption of laughing and cheering. Afterwards, one of my aunts hugged me and told me how happy she was. Because I had cried, she too cried. She thought that the MS was getting worse and I was about to tell them bad news… Thalia is now four months old and we have great fun together with a joy like I’ve never known. Having a loving partner and becoming a parent has unfolded a life-long love letter to what is our precious existence. Finally, I see how choosing to leave a bad relationship allowed me to move on to something precious.  My pregnancy journey was from a partner’s perspective and I’d really like to know how it has been for you? Please comment or send me an email.  More reading Fertility and Pregnancy Part 1 >> Join Emma on Twitter @emmadragon and blog at 

    Author: Emma Rogan - 24 Sep 2015

  • Photo for article: Fertility and Pregnancy Part 1 of 2

    Fertility and Pregnancy Part 1 of 2

    This week Emma Rogan gives the first of her two parts on Fertility and Pregnancy. “The great news is there is plenty of evidence that confirms pregnancy can be a very good time for women, with absolutely no evidence that a woman’s fertility is affected by having MS”. Did you ever dream of becoming an astronaut, a pilot, a parent, a dentist, a doctor, a diver or a Formula 1 driver? It was these fantastical, panicky thoughts that came rushing through on D-Day (Diagnosis Day). Illogical yet perfectly human - my mind was firing off in all directions with the news. A state of want, of loss, of abandonment came rushing in. Amongst the ‘what-might-be’’ was ‘what about children?’ even if they weren’t on my radar at the time Many Irish people don’t go through a lot of thinking about how they’re going to have children; we move through adulthood, perhaps meeting someone, setting up home together and then children follow. But if children are not an option without assistance (gay/lesbian/low fertility) or there are issues, it is then we wake up. We learn about AMH, the sperm count, choosing a donor, counting cycles, the disappointment of missing a cycle, of getting your period, or the heart-break of miscarriage. Or not. Many people have decided they want to be childfree with others who just didn’t have the opportunity or it was never the right time.  The challenges:  • If you’re on them, you’ll have to come off Disease Modifying Therapies (DMTs) and other medications in plenty of time before becoming pregnant. Do not use them when breast-feeding. Aubagio, Avonex, Betaseron, Copaxone, Fampyra, Gilenya , Novantrone, Plegridy, Rebif, Tecfidera or Tysabri are not safe in pregnancy. Talk to your neurologist.  • There is risk of foetal abnormality from drugs and medication. If you’re taking DMTs, use contraception if your having sex.  • There may be some effects on sperm production and count from DMTs and other medications. • If you’re considering fertility treatment, you need to learn all about the side effects and speak with your neurologist before you start. The ‘stims’ may have an effect on your immune system in ways you don’t realise; the last thing you want is a relapse when in the throes of the fertility journey.  • Other issues for women include muscle weakening of the pelvic area and/or loss of mobility or function, all things that can exacerbate bladder and bowel problems during pregnancy (but are a normal part of being pregnant because of the growing foetus). For anyone considering having a child or adding more to your family, talk about fertility with your partner, your friends who have MS and children and family. Have your fertility tested; with knowledge you can make informed choices and make decisions based on what’s best for you as well as your partner and your family. Woman or man, do the right things by your body (exercise, a good diet, healthy relationship) and you’ll be giving yourself the best chance at enjoying your own life while trying to create a new one. The great news is there is absolutely no evidence that a woman’s fertility is affected by MS but there is lots of evidence that confirms pregnancy can be a very good, normal experience. Many women discover the positive biochemical effects of pregnancy (the immune system is suppressed to allow for the foetus to grow inside her body, the increase in good-feeling naturally boosted corticosteroids) and the other natural boosts from the changes in her body means the majority of women with MS have a normal pregnancy. But if there is a lot of disease activity or  if there is loss of function, decisions need more time and planning.   Although the issues are the same for MSers as for other pregnant women keep in mind the additional aspects of having MS. There is a risk of relapses after the birth - as the immune system comes back to normal but there is no evidence that there is long-term disability because of pregnancy. As with the relapse rates, the life-changes that come with having a new-born in our lives is something we can never be prepared for. BUT do build your support networks, have people prepped and ask for help when you need it.   Next week I’ll be going through other aspects of fertility and pregnancy particularly the first five weeks of life with a new baby.  Suggested reading:  MS Trust Pregnancy and Parenthood Multiple sclerosis and pregnancy in the 'treatment era'. Vukusic S, Marignier R Nature Reviews Neurology  Fertility, pregnancy and childbirth in patients with multiple sclerosis: impact of disease-modifying drugs’ Amato MP, Portaccio E. CNS Drugs Join Emma on Twitter @emmadragon and blog at 

    Author: Emma Rogan - 18 Sep 2015

  • Photo for article: Ageing and MS

    Ageing and MS

    Ageing, a word that makes us cringe.  Decline, another word that grabs you by the throat. With a diagnosis like MS, our priorities of trying to achieve utter physical beauty sometimes takes a backseat, and instead we start worrying about how well MS will treat us as we get older. While many of us are not that worried anymore about sagging physical parts, ageing does pose a lot of questions, especially since ageing and MS go hand in hand.  Because approximately 85% of people are diagnosed with relapsing/remitting MS, the possibility exists that their illness will gradually turn into the progressive stage. Added to this, ageing and MS have overlapping symptoms, like balance, memory or muscle weakness issues. True, ageing is a challenge, as is life with MS. Combined, they are hard to stomach. You might wonder what your quality of life will be. Living independently or in long-term care, afraid of increased mobility issues, of asking for assistance and/or becoming a burden, anxiety… these are all questions we quietly live with.  However, there are ways we can ward off the pitfalls of ageing. As challenging as life with MS is in whichever stage of the illness you find yourself, trying to stay physically and mentally active is key. Ageing well with a physical disability will see you reap rewards if you have an achievable exercise plan in place. Even slow and relaxed exercise is the start of a continuous circle that will not only help you improve strength and mobility, but it will lower your fatigue levels as well as raise your self-esteem, mood and prevent weight gain. Exercise will also see you obtain better cardiovascular and continence issues. Ageing does not have to lead to depression. On the contrary, many elderly people live fulfilled lives and can achieve goals they perhaps never thought of when hearing the word ‘ageing’. In fact, I recently wrote a post on my own blog called ‘Use It Or Lose It!’ about cognitive decline, as I found that the more you use your brain, the better life becomes. Needless to say, it might take some time before you see those rewards, but do not be discouraged if or when you don’t see results straightaway. What is important is to keep trying, and keep that exercise plan rolling. Contact your GP, MS Nurse or Physiotherapist if need be to readjust your goals. Any exercise is better than no exercise (if you want more information on ageing, physical disability and exercising, here is an excellent website). But, ageing is not about exercising only. Family life, grey hair, hobbies, perhaps a few more hours at work, coping with adversity, looking after your own wellbeing… it’s an important part of how to age as gracefully as possible.  Balancing life and an unpredictable illness is a hard act, but it’s good to remember that while chronic MS is not a terminal or fatal illness. In fact, a 2015 study in Neurology found that in data used from Canada showed that, “People with MS had a median life span of 75.9 years, while people without MS had a median survival of 83.4 years.”  My view? I am an expert-patient of myself today, but by the time, I reach 60 I will more than likely have achieved a doctorate in how to live well with MS.  Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more.  

    Author: Willeke Van Eeckhoutte - 10 Sep 2015

  • Photo for article: Vote for MS & Me

    Vote for MS & Me

    Community blog shortlisted for Blog Awards Ireland Great news! MS and Me, has made it to the short-list in the 2015 Blog Awards Ireland - Best Health and Wellbeing Blog Category. To help us reach the final please click on the image below and select MS Ireland's MS & Me Community Blog. Voting closes Monday, 21st September 2015.    THANK YOU to our dedicated bloggers - Aoife, Declan, Emma, Helen, Joan, Lucina, Niamh, Trevis and Willeke for sharing their MS stories and everyday life with us.  Further reading MS & Me community blog Meet the team  Blog Awards Ireland website

    Author: MS Ireland - 08 Sep 2015

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