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

  • Photo for article: Quality of Life

    Quality of Life

    How full is your (tea) cup? This week Emma talks about what Quality of Life means to someone living with MS and what it means to be brave. I love tea, in particular ‘Irish’ tea. From morning to late afternoon a cup of that golden-brown liquid deliciousness is usually enough to cheer me up and set me ‘right’ even if just for a little time. I like mine fairly strong with almond milk (dairy-free) or black with a slice of lemon. In many ways, tea is the best social lubricant at any event, never mind what people say about alcohol.  But not everyone likes strong tea with lemon. You might like weaker tea with sugar, prefer herbal tea or, like so many people, you just don’t like tea at all. You choose something else because it suits you better. So it is when we try to measure Quality of Life, it’s the same but different for all yet…. What does it mean when we’re all coming from very different experiences, cultures, backgrounds, diagnoses and MS symptoms?  In the 1940s Abraham Maslow, discussed in a psychology research paper, theories of human motivation that have been popularised by a pyramid shape with the most basic needs at the bottom. Once the first needs were met, a person would then be free to consider the second and so on.  Physiological Needs- air, food, water, sex Safety Needs - shelter, security, freedom from fear Love and Belongingness Needs - friendship, intimacy, affection, love from family Esteem Needs- confidence, achievement, independence, self-respect, respect from others Self-actualisation- realising personal potential, to become the person you would be Quality of Life (QoL) refers to the general well-being of people and society. It has many facets to be considered including environment we live in, our emotional, physical and mental health, education and sense of social belonging.  Multiple sclerosis messes up every theory. My life was turned upside down and measurements fell by the wayside. Problems in life, problems dealing with the symptoms, problem reactions, problems with others, problems with relationships, we think we are our own problem and we daren’t imagine that anything different, something better, is possible.  We fluctuate between apathy to life to compassion for ourselves. Relationships MS takes hold of a person and scares the rest of what was the ‘self’ into hiding. How do we ever get back from that? It doesn’t change by accident, it does take a lot of time and it can be exhausting. But there is no other option if we are to have a good Quality of Life based on our own personal design. Yes, MS was once the very worst thing that could ever happen to me. What I’ve discovered is that the only way to have any good/great Quality of Life is to have a sense of ‘self-worth’. It means confidence, being focused on what I need to thrive, respecting myself and others and not being distracted from being the best version of myself.  A friend, who has since passed away, used to knock joy out of every moment. No matter what, he’d have me cracking up from the moment I collected him and his wheelchair accessible van to go to a branch meeting, to when we parted. He was never afraid to be afraid, to be happy. He reminded me to be brave. Viktor Frankl said, “When we are no longer able to change a situation, we are challenged to change ourselves”. Now, where’s my tea? Let’s talk more about this and other MS/life stuff. Join me on Twitter or http://republicofemma.wordpress.com   

    Author: Emma Rogan - 25 Sep 2014

  • Photo for article: Losing My Religion!

    Losing My Religion!

    We have all had those conversations with ourselves - 'what would my last thoughts be if I was on a sinking ship?’  As a non-believer, I've wondered if I would I hedge my bets and start to pray to a (wo)man above. The closest I've come to that sinking ship 'moment' was in the days and weeks around my unexpected diagnosis with MS. In those long days, I was overwhelmed with good wishes, cards and gifts from family and friends. I was given religious relics, mass cards and messages saying that I was in people's prayers. I appreciated each and everyone of these gestures, but I confess, it did nothing to draw me back to the teachings of my Roman Catholic upbringing. Rather, it reinforced my lack of faith. Would I say that I am a full blown atheist? Probably. This can be tricky living in Christian Ireland, when education, births, deaths, marriages and everything in between is immersed in religious ceremony. But I am happy enough to go along with these and actively participate at times. Am I a hypocrite? Probably.  I met someone soon after my diagnosis who asked me, 'Have you thought, why me?' My initial response to her question was to imagine myself on a Eurovision stage, having a Linda Martin moment, belting out her tune 'Why Me?’. My second thought was 'Why NOT me?’ I certainly didn't ask the God that I don't believe in, 'how could this happen to me?’ It's just the deck of cards that I've been dealt and I may get on with it.  However, I know that family and friends continue to pray for me and I genuinely appreciate that. I feel if they can get comfort from their own prayers, or if their faith helps them come to terms with my diagnosis, that's good for me. So, am I ‘faithless’? I don't think so. I have faith in my medical team in Beaumont Hospital. In a way, I feel that I have almost transferred a traditional religious belief onto them, willing them to make the best decisions around my care. In a wider context of medical research, I have faith in new developments in medical treatments and ultimately a cure for MS being found in my life time. Perhaps this is unrealistic, but that thought helps me stay optimistic about the future.  If you are religiously inclined, there is no point in praying to God to win the Lotto, unless you buy a ticket. In the same way, I have not passively handed myself over to a medical team to do all of the work. I'm working damn hard to be well, trying to strike that balance between meds, exercise, lifestyle and general well being. I try to practice mindfulness as much as I can, to appreciate the moment, to see beauty, to embrace life with both hands. I continue to be touched by gestures of human kindness. And so, I'll keep the faith.

    Author: Lucina Russell - 17 Sep 2014

  • Photo for article: Our Responsibility to Research

    Our Responsibility to Research

    I was just reading a blog post by Dr Eric Downer on the patient-researcher divide on 'Living Like You' and it brought to mind the need for patients to take part in research. Gandhi once said “the future depends on what we do in the present”. I know that he wasn’t talking about research and Multiple Sclerosis but it holds true just the same. If researchers do not do the research and we do not take part in that research then we are going nowhere fast; As Dr Downer said “We can read forever about the progression of the disease and symptoms in textbooks and journal papers, but we must talk more to people to understand individual experiences and hence become more informed.” Without the participation of patients such enquiries will grind to a halt. I think that if researchers have personal interactions with people affected by MS (or any other illness for that matter) it takes the illness out of the theoretical realms and lands it firmly in the personal realm. We owe it to future generations to help find a cure for MS and if not a cure to at least provide brake pads to stop the damned thing or at least slow it down considerably. To my way of thinking a cure would be incredible, though unlikely. Imagine being able to walk and talk and see and not be fatigued or in pain all the time. This would be the stuff that dreams are made of; more probably pipe dreams. Immunisation for those who are susceptible would also be brilliant; that we would no longer wonder whether we had somehow passed the errant genes on to our children. Less worry = less stress for us that already have it. We already have medications on the market, and more on the way, that have a slowing effect but it is difficult to say something has slowed down when you don’t know how fast it was going in the first place! Assisting in research doesn’t have to be painful or time consuming but it does require commitment. We owe it to our children and their children and the world at large to do all in our power to understand what causes MS because if we don’t know what causes MS, it will be exceptionally difficult, if not impossible, to find a cure. Healthy people also have a duty to assist research. It is important for researchers to find what keeps people healthy as opposed to what allows others to become ill. The Icahn School of Medicine at Mount Sinail are looking for healthy volunteers to submit a sample of their DNA. Please give it some thought. It is quick and painless and may help others.  Have you taken part in a research study for MS? Do you feel an obligation to be a part of MS research? Declan Don't forget to check out able2access.wordpress.com  

    Author: Declan Groeger - 11 Sep 2014

  • Photo for article: To Tell or Not To Tell?

    To Tell or Not To Tell?

    The choice to disclose an illness, newly diagnosed or not, to your employer is very much a personal one. Whichever you choose, fear of losing your job or being discriminated against can cause sleepless nights just when you need your rest more than ever. When I first started experiencing MS symptoms, work was hectic because I was juggling different roles at once. Trying to stay at work, however, was even more challenging. I loved my job and tried my utmost to keep absences to a minimum. My main priority was involving my employer because I wanted to show them that I was still me, still able to do my job.  Trigeminal neuralgia and severe fatigue made sure I was in and out of the office a lot. My colleagues understood the situation I was in, and when I had to be admitted to hospital 5 weeks before my diagnosis, they were there with me.  In addition, the MS society sent me brochures on what MS is, how fatigue can impact people, and how to handle stress and MS at work. I decided to give these to my manager and HR department because we would be navigating the road of my illness together. It proved very beneficial. An occupational doctor came to my desk to see what adjustments could be made to make my working day easier to handle. Eventually, I was allowed to work from home, something I would never have been allowed to do if I stayed quiet about my MS. Looking back now, it lead to the best and probably most productive time I ever had in employment. I was able to sleep at least 1h 30mins longer in the morning and I gained roughly 2 hours of otherwise commuting back home at night. For my own emotional health, deciding to disclose meant that I could simply be myself at work. I had very painful bouts of trigeminal neuralgia and fatigue, and physically I would not have been able to hide those symptoms. On the contrary, I now had my colleagues support, as well as that of my employer. Recent research show that people who disclose MS to an employer were more likely to remain in employment in year 3. The 2004 Employment Equality Act safeguards anyone diagnosed with MS from the time of diagnosis against unfair treatment and discrimination in the workplace, regardless of having symptoms or not. In addition to this, an employer has to make “reasonable adjustments” to ensure that you’re not disadvantaged by certain arrangements or physical features of the workplace.  Other adjustments in the Employment Act include: The possibility to work from home Transfer to another post of place of work Flexible working hours Make physical adjustments to furniture and/or tools you use Make adjustments for easier access the workplace  

    Author: Willeke Van Eeckhoutte - 04 Sep 2014

  • Photo for article: Back to School

    Back to School

    Back in my school days, there were two types of copies: the ones with the lines and the ones with the squares. A protractor was about as sophisticated as my pencil case got - although, I was ecstatic to find lethal weapons (set-square and compass) therein! Things have gotten much more complicated in the year of the loom band with all kinds of paraphernalia to be bought before September the first. I spread the Back to School chores out over the Summer holidays this year. I had a stressful few days late last August when I witnessed the manic look my fellow parents get in their eyes when they realise that the last B4 Handwriting copy available in the county is up for grabs. I saw two grown women almost come to blows over the queue in the bookshop and it was not pretty! You need to be at the top of your game and having an illness like MS does not marry well with stressful situations. I always start out the new school year with good intentions. We will NOT be late! We will NOT forget it is P.E. day! We will get the homework done as SOON as we get home. We will be MORE cheerful than the von Trapps. We will ENJOY tasty and nutritious lunches (even though one child only likes garlic bread and the other is always way too busy chatting to eat anything in school).  As the school year goes on - things start to unravel a bit. New shoes get scuffed. Knees get grazed. Tears fall and get wiped away. The unachievable makes way for the “good enough”. It’s important to rejoice in those days when nothing in particular happens. When we are just living. When the homework gets done eventually and we all go to bed happy-ish! The kids are of an age now where they understand a bit more about my MS. They know I like to take an afternoon siesta and quite often I say the wrong word when I meant another one. They know I am not one for long walks and they will probably never witness me running (unless I have caught sight of the last B4 Handwriting copy!). Sometimes, they ask me if the doctor has made me better or if I “still” have the MS. They have gotten used to my illness, as I suppose, have I. This isn’t a prescriptive blog. I’m not telling you about a white paper I have read or a pill you can take to improve your life. It’s about daily, beautiful, boring life going on - despite MS.

    Author: Joan Jordan - 28 Aug 2014

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