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

  • 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 able2access.wordpress.com Looking forward to your comments... Declan

    Author: Declan Groeger - 20 Nov 2014

  • Photo for article: Marking and Measuring One Year of MS & Me

    Marking and Measuring One Year of MS & Me

    'MS & Me Blog marks one year by looking back and looking forward' Five hundred twenty five thousand six hundred minutes; that’s how the cast of the musical Rent marked the passing of one year. As the MS & Me Blog celebrates one year since our first post, we thought we’d take a look back at the last 525,600 minutes and mark some of our highlights. We started as a cadre of seven people of ranging writing experience and something to say. We are now 9 moderately experienced bloggers with a popular platform, writing about the important issues to the MS community… and we love our community. In the past twelve months, our team of nine has written 38,677 words in the form of 62 blog posts (for the composition students, that’s 623 words per post). Not bad for some of us who haven’t written more than a thank you card since school. 20,735 of you have come to this page to see what we have written and spent countless hours (okay, we can count them but my maths skills have taken an MS hit) reading and joining in the conversation. By ‘joining in’ I mean commenting - 404 times you’ve commented to share your story, to offer your experience, to ask a further question and to make the MS & Me community more than we hoped it could be. We have celebrated our personal triumphs as well in this past year. One of our ranks produced a film, another named finalist for best personal blog in Ireland. One of us was named the MS Ireland Person of the Year and one ranked as the world’s #1 online leader on the topic of multiple sclerosis. One of our bloggers has been leading the European charge for MS employment rights and yet another advises people about travelling with disability. There have been blogs (and comments) about relapses and fatigue, of family and of falling. We’ve written about staying positive and facing death. You’ve read about keeping it private and falling in public. There have been posts about before MS, what’s next after diagnosis and about children and MS. We’ve touched the difficult subject of depression due to MS and the joys of travel in spite of it. It wasn’t just our MS & Me blog community who noticed either! With less than 10 months under our collective blogging belt, MS & Me was first nominated, then short listed and eventually made a finalist as both “Best Blog 2014” and “Best Group Blog”. While we didn’t take home any hardware from the night, two of our ranks attended and represented our entire community. We hope you are as proud of this growing community as we are. Now, as the old saying goes, “self-praise goes but little ways”. Enough about what has happened in the past year. We look forward to the next twelve months and beyond as we grow with YOU, as we celebrate in spite of MS, as we touch on topics that are most sensitive and as we ALL share our best hopes as we walk (or wheel) along our collective life’s path with multiple sclerosis. We look forward to the journey with you and hope that you’ll bring a friend now and again. Until the day when we are no longer needed, we are all here for one another. We are “MS & Me”... Cheers!

    Author: Trevis Gleason - 13 Nov 2014

  • Photo for article: Hope...

    Hope...

    “Hope” is a word full of meaning. A heavy-weighing word too. People with MS cling onto hope because at the moment there is not much else we can do.  I’d like to think that I have my MS figured out pretty well. I know what I want and don’t want for myself. Is life not worth treating your body well, so you can have a decent future? I agree that your body can change under a bucket load of chemicals, but it’s the best doctors can do for now to make us as steady as possible. Me? I hang on to my meds like they’re my best-prized gift. I inject every day. I take a lot of medication and even though I know they have side effects, I feel good about taking them. Weight gain, sweating and stomach problems are part of the deal, but at least I am not going through nerve pains un-aided anymore. There is still pain, chronic pains even, but it’s such a relief to know that in my handbag or in my bedside tables, there is something I can take to reduce the pain. If I want to stay relatively pain-free and if I can keep relapses at bay by taking medication, then absolutely.  I choose chemical warfare in my body over not knowing what the future will hold for me if I should decide to stop my treatments. So I stay hopeful that one day some big pharmaceutical company will say they found a cure and that we can all stop taking medication used for other illnesses and that we can now start taking MS-specific meds that will cure us. Some people call MS “the monster” or they say they’re “survivors” or “sufferers.” I refuse to use the word monster, survivors or sufferers/suffering. I never talk about MS being my monster because it’s not. It doesn’t have blood-red eyes; it’s not one big, hairy spider coming after me in the dark. The word survivor in connection with having MS raises my eyebrows. Survivors of what? You survive cancer. You survive a car accident. That’s what a survivor is. MS doesn’t kill people directly. So I am not a survivor of anything.  Suffering as a word is so negative. I don’t use negative words or connotations in my language that would suggest I am in hell and I that can’t get out. My nerve pains can be really awful and crazy, but I’m good at hiding it. People, who know me, know that I never use the word “suffer”. Positivity is quite important because it’s helping me through the day with a giggle. The best physical, scientific and medical evidence we have, shows that chemical treatments like injections, tablets and other forms of traditional medicine, provide the best results. I’ve yet to read a scientific report that states that taking no medication is helping you stay relapse-free and pain-free in the long run.  One day there will be a cure, but as much as we crave a cure, we crave understanding and forgiveness too. Understanding because too many people have the wrong idea about MS. MS is chronic, even if you have remissions in between your relapses. We need people to understand we are not slacking because we’re lazy or because we have something better to do. We also want forgiveness, or maybe I want forgiveness. Forgiveness for cancelling dinner dates or cinema visits because I’m having eye pains or because I can hardly move because of nerve pains. Forgiveness for not sounding OK when slurring words and when I forget what was said after hearing 10 words. Forgiveness for not always looking perky. Forgiveness for having been a liability at work and colleagues, who understand at first, but get annoyed when it keeps going on. And while we want forgiveness for many things, we don’t want to feel guilty about it, or be made feeling guilty. We are what we are… still the same human being like we used to be. MS taught me so much about life, about enjoying every single second of it, even when in pain and when stuck in bed for days. Also, MS has given me the opportunity to slow down, to take stock, to rethink my future and to let go of old grievances. I have learned about kindness, love and most of all… about being there for other people when they need a shoulder to cry on too, because the world does not revolve around me, my illness or my situation. So… Am I happy? Yes, I most certainly am. 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 - 06 Nov 2014

  • Photo for article: Before MS I...

    Before MS I...

    Before MS I really took my health for granted. I rarely went to the doctor. I was afraid of needles. I didn't think about what I ate or what time I ate it. I took little things for granted like ticking 'no' when asked if I had any known medical conditions. I guess I never really had to consider these things before and each first that came along really got to me. When shopping for car insurance after my diagnosis I wasn't able to get many quotes online because I had to tick 'yes' to the medical condition. There are more obstacles in the way... extra paperwork! Before MS I thought I had all the time in the world to achieve life goals. Now I have to plan, I have to think ahead, I have to achieve goals in a shorter space of time. Life is harder, and I am harder on myself because of it. Before it became apparent in me, I didn't think young people could 'get' it. I never thought that I would have all this on top of 'normal' life. Before MS I didn't see the injustice of our health system. I didn't know that people had to fight for treatments. I didn't know that your postal address determined what you were entitled to. I had no idea that life was made harder for those who it was already hard for. Before MS I never questioned the opinion of a doctor, I trusted in them completely. I never thought that my opinion would factor into a medical decision. I never knew I would have the confidence in myself to make decisions that affect my health. Before MS I couldn't pronounce the word encephalomyelitis. I had never set foot inside a research lab but since my diagnosis I have travelled to the International Multiple Sclerosis Research Centre in New York, twice! Before MS I never knew I would have such an interest in research and information and even more, sharing that. Before MS I did not know that the MS community was made up of very smart, wonderful and strong people. Before MS I probably would have considered MS a weakness but now I know that having MS and carrying on with life as normal requires more strength than most people have. We don't always realize how strong we are until being strong is the only choice there is.

    Author: Aoife Kirwan - 29 Oct 2014

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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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