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

  • 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

  • Photo for article: My Relapse

    My Relapse

    I think I have an aversion to the World Cup. In July 2010 I ended up in hospital, and was subsequently diagnosed, with MS. Roll on 4 years, and I was back. I was in a different hospital, and the relapse was totally different than my previous one, but the drill was the same.  In the 4 years after diagnosis, I didn’t have any full-on relapses. I have symptoms all the time, I often feel like death warmed up, and there are days I can barely put one foot in front of the other. But, I’ve been able to live with it and, for the most part, get on with life regardless.  Winter time is my friend. When its cooler and dark, and I can stay indoors wrapped up and in front of the fire. I usually don’t feel too bad during winter. The worst time of year for me is when spring turns into summer. That time of year when the rest of the country is hoping for heat and sunshine, and to lie out in parks during their lunch, you can usually find me skulking indoors. This year I started feeling “off” in April. It usually takes me a few days to cop on to the fact that I don’t feel well, but I can remember feeling the onslaught of exhaustion at Easter. My leg was annoying me; my arms were heavy and awkward. I was off-form in general. I was still able to do my normal day-to-day stuff, but it was getting slower and laborious. I wasn’t overly worried, telling myself and others “well, this happens every year” and ploughed on. Six weeks of feeling unwell later, in the last week of May, a full-on relapse hit me smack in the face. On the Wednesday evening my eyes were unusually sensitive to light. After work we’d headed off to do our grocery shopping and the lights in the shop were too bright for me. I was walking around with sunglasses on, like an eejit, squinting and making faces at everything. It’s grand, I thought, I’ve been busy at work, the pc has left my eyes tired. Thursday morning I woke up feeling ok. My eyes were a bit sore, but my house is dark and working from home means I can keep the blinds down on a sunny day. I worked all day, feeling a bit uneasy, but nothing I could put my finger on. After work, my husband came in to the room, and when I turned my head to look at him, he was blurry. Isn’t that funny, I chuckled, I can see you in soft focus. The blurriness stayed all evening, and I headed off to bed early. By the Friday morning, I had complete double vision in my right eye. I convinced myself it was tiredness that I needed a BIG cup of coffee to wake up. I sent the hubby off to work as normal, and set myself up at the pc to start checking my emails.  Two BIG cups of coffee later, and my eyes were still banjaxed. I was sitting at the pc, typing with one eye closed. Not very productive or sensible. I have been told I am stubborn when it comes to my MS, but on Friday 30th May, I gave in. I called the GP, got a referral letter, and packed my bag to go to Sligo. On the Friday of a Bank Holiday weekend. Hey, if you’re going to do it, do it right! I’d never had Optical Neuritis before, it was a new symptom for me to deal with. It’s a pretty hard one to ignore too. It’s very unnerving not being able to see if something is in front of you. The journey to Sligo was awful. The double vision meant that instead of just seeing cars on the opposite side of the road, passing us, I could also see them coming towards our car at an angle. It also made me nauseous, which isn’t pleasant on a 2.5 hour drive.   I got admitted into hospital for 5 days, I had to have an IV steroid. Once a day, I’d get hooked up to a drip for about half an hour. The rest of the time I slept a lot. I was exhausted from the relapse and from the heavy dosage of medication. After feeling off for two months, it hit me like a ton of bricks. I needed to rest and recover, and as I couldn’t escape the hospital, I took advantage of the time away from normality and rested up. When I got home after the 5 days, I wasn’t back to myself at all. In fact, I felt worse. My eyes took another week to clear up, and I was still on heavy medication.  It’s only now that my family members have started commenting on how much better I look. I can honestly say I didn’t realise how unwell I was until I started to get better. I sometimes think I don’t have MS, that I’ve imagined it all and that I am spoofing everyone. The relapse made me realise that it’s not all in my head. I had a follow up appointment with my neurologist last week, who said other patients have made similar comments. I guess when we’re all functioning as normal we don’t realise how hard our bodies are working to fight this illness. And sometimes we have to give in. But, I am a stubborn article, who doesn’t give in easily. So, yeah, I blame the World Cup. Niamh

    Author: Niamh McCarron - 21 Aug 2014

  • Photo for article: A Letter to Me

    A Letter to Me

    Recently I took a trip with some of my fellow bloggers to Lisbon. During a chat over coffee with one of the ladies the subject of  "When I was diagnosed" came up. It inspired me to go rooting though my college boxes when I got home and I found a notebook I had while I was going through the diagnostic process. When I think back to that time I tell myself that I remember every thought and every feeling I had. Well it turns out that I don't. When I was reading over my written ramblings I felt as if it was written by a different person. Life really has moved on so far in the short 3 years since I was diagnosed. I read about the fears I had, the feelings I experiences and the thoughts that came to me. The trauma of the diagnosis had given me such a distorted view of my life and my future. I thought I was fine, but looking back it was an extremely traumatic time in my life. I was wasting energy thinking about something that might never happen. This got me thinking about the advice I would give myself if I could magically send a letter to the past. Here is my letter to me: Dear Aoife, You were semi-prepared for today. You prepared for the worst while hoping for the best, and (as you think) 'as usual' it has turned out to be the worst. Turn off your phone for a few hours and give yourself a chance to absorb what's just happened. The outside world can wait. Everything is going to be alright. You are going to regain 20/20 vision, so that lovely image in your mind of yourself with secretary glasses will have to wait for a while.  This is a scary time, allow yourself to feel the way you feel - there is no right or wrong way. Let your family know how you are feeling. They just got the news too… they are all feeling for you and wishing that it was them and not you. But it is you, and you are the one who is glad that it's you and not one of them. They are always going to be there to help out. They will do their best to support you and make sure that life goes on as normal. Share with them; let them know that you are allowing them on this journey with you and that you won't hide any symptoms or feelings from them. They will worry twice as much if they think they have to guess how you might be feeling. Just be open and honest and then they know the situation and they can help you more effectively. Keep going with college, there are only a couple of months left. You'll have to fight for it because you will be asked to defer, but keep going, you'll do it, don't give in. Do what’s best for you and not what's easiest for someone else.   Don't pre-empt what 'could' happen. So far so good, nothing you were afraid of has happened to this point. Remember that MS could have no affect on you for quite some time. Take each day as it comes and try not to worry so much. You will look back and think it was ridiculous to worry the way you did, and you'll feel like the diagnosis was small in comparison to the emotional turmoil you put yourself through by worrying about something that might never happen.   Forget the idea in your mind of what you think MS is. It's not something that is associated with older people. I know you are scared at looking at the possibilities of the future, but you'll change your mind on this. You will read and research tirelessly and you will begin to love it. Information is power and you will crave it. Get in touch with the MS Society. Engage with the community, they have all been where you are now. Don't be afraid to look at information, you will benefit from reading it and the fear that you have now will turn into knowledge. Instead of feeling like MS is unpredictable you will feel that knowing the possibilities puts you back in control. Instead of focusing on the negative elements of this, look for the good in it. In fact take that as general life advice and not just in relation to MS. It will make you a lot happier!  Trust yourself and trust your judgement. No doctor has experienced things the way you have. Nobody has experienced your experience, so you are the expert here. If you disagree or don't understand something fully, ask, question, interact with your doctor/nurse. They can't answer questions you don't ask. Remember, that you are in charge here, you are taking advice, but your decisions are your own and you need to be the one to make them. You can't expect someone else to make the decisions ahead of you, even though you would like to pass on that responsibility, you really do need to own it. It will make you stronger.   Know that medications are there but it doesn't mean that you have to take them. If you don't want to, discuss that with your doctor. Tell them how you are feeling about it. You don't have to feel in a rush to make a decision on a treatment plan, that all work long-term so don't feel under any pressure to push yourself into a decision. Take your time, relax and breathe.  Aoife

    Author: Aoife Kirwan - 14 Aug 2014

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