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

  • Photo for article: 'The Theory of Everything'

    'The Theory of Everything'

    I recently made a pact with a friend to go to see as many of this years Oscar winning films as possible, which were being screened at the arts centre where I work. With that in mind, we went to see biopic, 'The Theory of Everything' last week. I knew the film was about Stephen Hawking, the theoretical physicist and cosmologist, but didn't think about it much more than that. It was more a case of how quickly I could dash home from work, collect my children, pick up my friend and most importantly, get back to the arts centre in good time for a pre-screening glass of vino.  Early in the film, Hawking (Eddie Redmayne) is presented as a wirey young academic in Cambridge University. He soon began to walk awkwardly, to drag his leg and then on one occasion, fell heavily on his face. I felt that slap in the face as much as he did. Then I felt the needle of his lumbar puncture, during the following medical investigations. The tears rolled down my face, as I related Hawking to my own early tests for MS. Darn it, I wasn't expecting that. I just wanted to see a film. Hawking was his diagnosed with ALS, a form of Motor Neuron Disease (MND) around his 21st birthday. He was told that he had two years to live. At this stage, he had met a girlfriend, Jane (Felicity Jones), whom he married soon after and went on to have three children.   It was apparent in the film that Jane's role as carer was central to Hawking academic and publishing career, which went from strength to strength. Meanwhile, his health and physical state rapidly deteriorated. The film provided glimpses into Jane's role as carer, but it left me thinking about all that wasn't explored in the film. That awful word 'burden' crept into my mind - the thing that I never want to become.  There was a very moving scene where Hawking tried to climb the stairs to his infant son and couldn't. More tears. I needed tissues, but had none. Darn it again. Just as well I was wearing a scarf. 'Why are you crying Mam?’ my children whispered.  I had hoped that they wouldn't notice me, in the darkness. I found it hard to whisper an explanation. Were the tears for Stephen or for me? Fear for what might be? Or maybe it was a universal sob for the curse of chronic illness? Maybe a combination of all.   Overall, it is an uplifting film about Hawking's truly extraordinary achievement, against the odds. It also provides lots of food for thought about the role of a carer. In Hawking's case, he later employed a carer, who went on to become his second wife, which has been subject to controversy. But this film really focuses on his earlier life, based on Jane's memoir Travelling to Infinity: My Life with Stephen. I'm sure that the mundane reality was not as beautiful, but the film has a strong aesthetic, with dreamy cinematography. Jane's 1970's fashion made me want to root out all of my guna deas's from the wardrobe. The acting is super and the transformation in Hawking throughout the film is poignant. The film also provides a crash course for dummies (moi) on Hawking's theories. I feel like I know science stuff now.  I just wasn't prepared for how I would relate the film to my own health situation. If I was, I would have brought a multi pack of tissues. To state the obvious, I'm not Stephen Hawking.  I don't have MND. I dig holes in the garden, but I don't 'do' black ones.  I'm not a millionaire and am unlikely to be any time soon. If my health did deteriorate, I'd never be able to buy the care and support services that he can access. As a newly single person, I don't even have a 'Jane'. But I never want to be in the position to need a Jane.  I'd prefer a Tarzan anyway. Preferably with more clothes on. As we left the cinema, my little girl said, 'Mam, you look like a panda', noticing my mascara streaked face. My boy laughed. We all laughed.   Go see this film. Just remember to pack your hankies!

    Author: Lucina Russell - 14 May 2015

  • Photo for article:  A Social Aspect to Medication?

    A Social Aspect to Medication?

    Have I imagined it? Could there be a social aspect to medication? Having an incurable and unpredictable illness is never going to be a bundle of fun and the thought of taking medication for the rest of one’s life doesn’t do anything to alleviate the situation. Therefore we must take solace wherever we can find it. Let me set the scene for you; every 4 weeks I present myself at the local hospital. I get a cannula inserted followed by an intravenous drip which takes about an hour. That is followed by another hour of observation by the medical staff to be certain I have not suffered any adverse reaction and then I am off home again. This is repeated every 4 weeks and usually the same staff are present. The only comparison I can make is that it is like going into your ‘local’ and the staff greet you by name and ‘the usual Dec’. You know them and they know you; not friends in the strict sense of the word but acquaintances nonetheless. The other people getting infused fall into the same category. We exchange news and small talk over the 2 hours and then take our leave – really the local pub is a good analogy. It was suggested that I change my medication and as a result I would no longer need to have an infusion every 4 weeks. The final decision was mine and it was not difficult to make as I was changing to a one-a-day tablet which is much easier to handle but I didn’t think I would miss the monthly trip and the associated banter and chatter as much as I did initially. I don’t think the social interaction made the drugs work any better but I certainly looked forward to meeting my new friends every 4 weeks and having something to look forward to is good. Someone told me that there is anecdotal evidence of the positive social aspect of medication and that it has also been noticed in clinical trials but I failed to find any references. As I began to consider the impact of social contact and medication I have come to believe that there is a connection. Evidence supporting my theory in relation to MS is non-existent but on the basis that my theory fits other illnesses I researched and found an article that may bolster my theory. In a review of a number of articles, Mary P Gallant concludes that the studies provide evidence for a modest positive relationship between social support and chronic illness self-management. Social media can play a huge part in the social aspect of medication. Facebook has a number of groups where medication or the non-use of medication is discussed; Overcoming MS has 2,219 members on Facebook – this group is largely concerned with dietary issues whilst the Gilenya Group has 3,518 members where issues regarding that particular medication are discussed. ‘This is MS’ forum is a general forum where a lot of different medications are regularly discussed. I miss the social interaction at my ‘infusion local’ to a certain extent but not enough to change from my one-a-day tablet. There are a number of outlets available for general social interaction between people living with MS and this will be the subject of another blog! Declan Don't forget to visit a blog about accessibility for the mobility impaired   

    Author: Declan Groeger - 07 May 2015

  • Photo for article: Medication and MS

    Medication and MS

    I never gave too much thought to how my MS medication affects other parts of my body! I take medication because I don't want my health to decline. I suppress my immune system so it doesn't attack itself. But when I suppress my immune system I leave myself open to other things. I protect one organ and leave the rest open to damage. This one is primarily for the ladies, but of course everyone is welcome to read on. It's time to talk smear tests! It is so vital that you keep on top of your smear schedule. When taking disease modifying treatments you weaken your immune system, when you suppress your immune system you leave yourself open to cell changes that may not be problematic in somebody who is not taking an immune suppressant. But when you are taking medication, which alters the strength of your immune system, you are more susceptible to the cell changes and abnormalities.  Recently, I had a number of smear tests return abnormal, which I have been told is not unusual when on an immune suppressing treatment. It hit me completely out of the blue; I had never given a thought to this. But, I hadn't been having smears when I should have been!  As an MS patient, I didn't realise the extra importance of keeping on top of this. When I was diagnosed, I went on treatment. To me the two went hand in hand. It was the only option I had, I was given options on treatment and it never occurred to me that I could choose none.  I wanted to ensure that I kept myself as well as possible for the future. But what's the point when I leave myself open to other more sinister things? I know this is probably just me worrying and some of you will completely disagree with me, but I am growing more and more concerned with the consequences of taking medication like this. What's the alternative? What decision did you make? Did you choose NOT to go on medication? Did you consider not going on medication but then decided too? For me, I think at the moment I need to clear my head. I am going to adopt a new set of rules. I'm going to look at what I can do naturally, look into what has worked for others in terms of diet, supplements, etc… and maybe see in a few months time how I am feeling about the whole thing.  Once I have had time to process and wean myself into this healthier lifestyle… I will re-evaluate the situation to see if MS medication is something I will still want!  

    Author: Aoife Kirwan - 30 Apr 2015

  • Photo for article: Complaining Effectively

    Complaining Effectively

    I suspect that you can’t properly complain about MS to friends, family or colleagues; I’ve come to the conclusion that they just don’t don’t get it.  Not even understanding spouses, partners,  BFFs or parents, can really understand what you are feeling or experiencing, living with MS. I try to share that with MS-friends only, and  keep it to a minimum with everyone else. MS is such a complex disease and it can take you so far from what a normal body experiences. I value my real MS-friends so much and the support that we can give each other. Online MS’er’s are a great source of support and information too, and you can meet people that are going through so many similar things to yourself.  Complaining about services is where I can flex my complaining muscles effectively in person. It’s not complaining so much as getting results. My Mum is a very gentle, shy person but she taught me a lesson in complaining. Having bought an electric sewing maching in 1996, I was alarmed when it started up by itself, and started sewing away on its own at full speed. When smoke came out, I was even more alarmed and the plug was roasting to the touch! I lugged it back into town to complain, and my Mum met me at the shop. I thought the sewing-maching man would refund me the money without a problem, but he started to argue! My will was flagging at that stage, and to my delight, mild-mannered Mum stepped in, and just kept asking ‘what are you going to do about it’?, until he caved in and I got a cash-refund. Go Mum! Then there are the times when your health is on the line, or someone in your family. It’s very stressful when you’re in a vulnerable position of patient or next-of-kin, but it has to be done. It’s difficult sometimes to take the emotional disappointment out of a complaint, but it makes it much easier to make progress by not involving anger or resentment. If the person involved isn’t willing to do something about it, find out who is responsible for it, and make contact with them. Sometimes the service-provider genuinely has no idea they are coming across in the way they do, and appreciates the feedback. I use online forms for giving feedback too and I think it’s very useful to read reviews from others.  The one exception about complaining is a note to myself; do not complain when on steroids for MS-relapses! I become completely fearless on steroids and once voiced my dissatisfaction about a tough fellow-passenger smoking on the bus. Passengers near me drew in their breaths as they waited for a major row to erupt. The smoker said ‘ye wha’?’ in anger, in answer to my request that he extinguish his cigarette. I repeated my request politely but firmly. He put the cigarette out.  I then spent the bus-journey in a state of panic when I realised that the smoker looked like he might knife me. Nothing happened though, I got ‘well done’ nods from passengers around me, and I was rather elated at having won the bus-fight. Next time though I’ll wait until I’m not on steroids to complain.  Stephen Hawking said ‘People won’t have time for you if you are always angry or complaining’. What a man... Further reading MS World-Forums: Huge international message-board  Health complaints Office of the Ombudsman: for complaints about public bodies including HSE  Consumer complaints

    Author: Helen Farrell - 24 Apr 2015

  • Photo for article: Exercise and MS

    Exercise and MS

    As a follow on to my last blog about eating healthier, I decided I would make more of an effort to increase my fitness and mobility, which has taken a back seat for a long time! To start, let’s call a spade a spade... I am lazy... I have never been a fan of exercise, apart from swimming. So, when  I see others go for a run or cycle, my first thought isn’t “oh I wish I could do that”. I can’t say that MS has stopped me from doing sports I love, I was never that way inclined anyway. Exercise can be very difficult for people with MS, as an increase of exertion can result in a temporary flare up of symptoms, which in turn makes us feel a bit rubbish (“a bit rubbish” isn’t the term I usually use, but my mammy might read this).   In the past, it was thought that exercise was actually bad for people with MS, and it should be avoided. This theory isn’t supported nowadays, and in general exercise is encouraged. Of course, people should follow the advice of their doctors and neurology team, and listen to what their own body is telling them. I want to improve my health and fitness overall, so I made a decision to walk more and to try to increase my activity levels. I have symptoms in my legs a lot, my balance can be off. I can feel sore and achy first thing in the morning, or if I’ve been sitting at work all day. I was surprised to figure out that a walk sometimes helps to ease my legs. This was helped by the addition of Bob - the - dog to the household, who is very excited by a stroll at lunchtime or after work, and isn’t too bothered by a numb leg getting in his way. I am better off walking by myself (and Bob, of course) as my pace can vary greatly from day to day. It would be frustrating for both me and my friends if I could keep up with them one day, and was lagging behind the next.  I have to be sensible about it. Some days I am able to walk a lot further than others, so I have to recognise when to stop.  It used to annoy me when I got tired and couldn’t go as far as I wanted to, which put me off trying in the first place. I had to re-evaluate my expectations. I now know that pushing myself too far has a negative effect on my energy levels, but most days I can manage to have a decent walk before I get to that point. Being a lazy article doesn’t help, any sign of a twinge and I would retire to the sofa! It has taken a while to change that attitude.  I think the main thing I’ve learned is not to put too much pressure on myself- if I don’t manage to get out and about today, it’s not that big a deal, I can try again tomorrow. Thanks for reading Niamh

    Author: Niamh McCarron - 16 Apr 2015

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