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

  • Photo for article: Public v Private Health Insurance

    Public v Private Health Insurance

    This week blogger Lucina Russell shares her experience of public and private health insurance. This business of Public v Private has intrigued me since I read the Brian Friel play 'Philadelphia Here I Come', in secondary school. The play illustrates the conflict between Public and Private Gar's thoughts and actions, through the reveal of his past experience, present feelings and future fantasies. This has absolutely nothing to do with the topic of Health Insurance, but it makes me look well educated, or at least shows that I have a good memory … It was around that age that my mother started hammering home the 'Essential Tips for Being Grown Up'. One of the best pieces of advice she gave me was not to say bad things on your friends' boyfriends if they split up, in case they got back together again. I should have listened ! Another piece of advice was to get Private Health Insurance as soon as I could. Once I had a steady income, I got the insurance in place. It made me feel very grown up and secure. I had a twin pregnancy 7 years ago and forked out €3,000 on top of my policy for the care that I got. I must say, I had top class treatment, but if I did it all over again, I'd prefer to spend the money on something else … A three grand shopping spree sounds rather appealing. Four years ago after a very scary weekend with blurred vision and terrible headaches, an optomologist told me that I had Optic Neuritis. She referred me onto a Neurologist and made an appointment for an MRI. My MRI appointment was four days later, the Neurologist appointment for a fortnight later. I went home to wait. In the meantime, I was very sick. The headaches persisted, I had constant nausea and my eye closed with the strain of the blurring. My young children wanted to climb all over me, but I wasn't able for them. In the end, I just couldn't wait any longer and went to A&E in the private hospital, where my appointment was scheduled two weeks later. After spending €350 on blood tests and a few hours monitoring, I was told that I should go home and wait. They said they couldn't do anything without the MRI results. I asked if they could do them there and then to speed up the process. It would cost another €700 (at least). There was no guarantee that they would then admit me. So I went home, with a heavy heart and an empty wallet. I had my MRI, as scheduled a few days later. A friend suggested that I get a referral letter from my GP and to head for A&E in Beaumont Hospital. That's what I did. After a rather unpleasant and almost surreal night on a chair in a packed A&E Department, I was admitted to the Neurology ward the following morning, had a lumbar puncture done and started a five day course of IV steroids. The care was super. I felt listened to and my opinions and fragile state respected. I asked the staff what difference my Private Health care made to the care that I received. The reply was 'none'. Basically, if you are sick enough to be in a Neurology ward, you're in. I found that the aftercare available to all MS patients in Beaumont is equally good. I particularly like the telephone service, where you can phone an MS nurse and just have a chat. I had a further health scare earlier this year, which involved a Fast Track trip through the Breast Check unit in St James's Hospital. While frightened by the speed in which the tests took place, I was very impressed by the rigors of the tests and the level of communication from the medical team. Thankfully, all was well, but either way, I felt that I would receive the best care available. Family members had similar experiences positive experiences on the oncology and cardiac services, again all through the public system. I don't consider these services as 'free of charge' though. Isn't that why we pay hefty taxes?  When the subject of the benefits of private insurance is discussed, elective surgery is often mentioned, for operations such as a hip replacement. An elderly relation of mine has a hip replacement recently, but only after a long and painful summer of injections into her knee by a private consultant, who didn't associate the pain in her knee with her hip. So it seems that private hospitals make mistakes too. Furthermore, when she has a heart attack after the surgery, she was rushed to the neighbouring public hospital by for treatment.  As a result of these experiences, I've been thinking long and hard about the benefit of private health insurance. I listen to the media, talking about a public health system in shambles. I know about the patients sleeping on hospital trolleys.   I remembered my mother's advice. I considered my long term health needs. I thought about my ever decreasing bank balance. In the end, I cancelled my health insurance policy. Just please don't tell me Ma! 

    Author: Lucina Russell - 17 Jul 2014

  • Photo for article: Children and Multiple Sclerosis?

    Children and Multiple Sclerosis?

    MS is a life-changing event, but so is having children. If MS had not entered Willeke's life, she absolutely would have wanted children. Although life was good in my last relationship, I secretly decided that having children would probably not be on my list of things to do. Not because of the lack of love, but because I didn’t want to pass on my illness to my future son or daughter. When we eventually talked about possibly mixing my illness with his screaming babies and hectic lifestyle, I realised that in quiet, I made the right decision. Being broody comes with being female, and despite my decision, I still get broody sometimes. If MS wouldn’t have entered my life, I absolutely would’ve wanted children. One of the few nice things about being chronically ill and being childless is however, when looking  after children of friends and family, you can give their children back at night. I get to go back to my own cool, dark bedroom in my quiet house, and I have my broodiness resolved for a while. Eventually my decision came up when friends started to wonder when I would have children. A few people raised their eyebrows when I said that I most likely wouldn’t. Especially in a country as matriarchal as Ireland, I was asked if that wasn’t selfish, or if I simply didn’t have any motherly feelings.  Brutal honesty told me to defend my decision, but I also had to tread carefully. Not everyone understands what life with MS is like, and I don’t always feel like explaining my symptoms. Family and friends who know me, very recently commented on my lack of verbal behaviour, because they noticed my sudden silence. I only need to say one word for them to know that my energy is completely gone: “tired.” Nothing registers anymore and talking gives way to trying to preserve that last bit of energy for what I am doing at that moment. Also with trigeminal neuralgia, the slightest sound or whiff of air against my cheeks can make me yelp. The only place I then need to be in, is my bed. It’s the last place you imagine yourself being in when your child wants you to play. My relationship ended for reasons different than not wanting children, but it taught me a valuable lesson. When chronically ill with the possibility of passing your illness to your future children, being honest pays dividends, especially when a new relationship is on the cards. After all, MS is a life-changing event, but so is having children. It’s very much a personal choice, but also a very important one that cannot be ignored. 

    Author: Willeke Van Eeckhoutte - 10 Jul 2014

  • Photo for article: Elections and Multiple Sclerosis

    Elections and Multiple Sclerosis

    The View from Here; Opinions from a Life with Multiple Sclerosis: 'After his first experience of election season in Ireland, Blogger Trevis L Gleason has some observations' Well, first let me say that I’ve yet to figure out just how the whole ballot sorting business is carried out here in Ireland. That may take a few election cycles to get my American head around. One thing I found impressive during the open campaign season was the engagement by both my neighbors and those running for office. I learned much about the candidates, the parties and the process in these past few weeks. Perhaps what impressed me the most was that all of the messages got out without the rancor of political adverts on radio and television that I’m used to back in America. I took advantage of the candidates or their proxies showing up at my front gate to ask them questions I felt related to people living with MS. I was rather surprised by the responses (and lack thereof). None of the candidates or party representatives who showed up at the end of my bóithrín was willing to come out in support of death with dignity legislation (though a couple did say it was worth studying on a constitutional level). The idea of medical marijuana use in Ireland was firmly quashed at my gate front by the canvassers.  When I asked about the mobility and transport allowance debacle, I got blame for other parties or “it’s something which needs to be sorted” responses.  In short, I found that no one who came to my house looking for votes seemed to a) know much about our disease, b) be in support of any of the issues I find legislatively appropriate when it comes to living with MS or c) have expected discussion on topics beyond their polling told them to prepare. I’ve heard and read of stories with people becoming (justifiably) angry with agency employees, contractors and people simply carrying out policy.  Why is it that we don’t seem to hold elected officials directly responsible for issues that hit us closest to home? Why aren’t we pushing those in Government who write legislation to take up our cause or ignore us at their electoral peril?  Do we think that the issues are going to address themselves? Judging by the reactions I received on the lengthening spring evenings when the parties came a calling; self-address isn’t going to happen. What do you think people with MS should do to get our points across to Council chambers, Leinster House and beyond? Wishing you and your family the best of health. Cheers Trevis You can also follow us via our Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com

    Author: Trevis Gleason - 03 Jul 2014

  • Photo for article:  Employment Access: The value of work

    Employment Access: The value of work

    Employment affects your brain, your mental health, the money in your pocket and life you get to live. This week Emma Rogan discusses the value of work from her perspective and how having something to wake up FOR can transform our lives.  What did you do today? Did you get up, shower, dress, have breakfast and leave your home? All set for your morning routine and commute to your workplace? Did you see the familiar faces on the train/bus/in traffic/on your morning walk? Maybe you had your charge of coffee or perhaps a nice gentle wake up with a cup of tea at your usual cafe? Or do you work from home with a shorter commute at the kitchen table or in front of your favourite window? When your day was over, did you have a sense of accomplishment? Or did you leave the office/work site, relived to get the hell out out of there, stomping work off your shoes with every step yet knowing it was okay because you we’re going to get paid at the end of the week. Now, take all of that away. No routine, no social engagement, no cognitive stretching, no sense of professional accomplishment and no fulfilled ambition. Oh yeah, and there is no money at the end of the week/month that allows you to do things you want to do, to socialise and take care of yourself, your family, your future. Paid work opens up opportunities, provides income, a sense of purpose, dignity and social connectivity as Mary here so eloqently describes Up to 80% of people with MS stop working within 15 years, an average of 18 working years, with huge costs to the exchequer as well as the loss of human potential. In Europe, MS ‘costs’ €15 billion with a further €5 billion lost in potential earnings and taxes. Research has shown that disclosure, coming out about your MS to your employer, has a significant positive impact on how well people do in the workplace. There are also laws about your rights in work. Whatever you choose, here is a video from Shift.MS called the Circle of Truth that explains so well the predicament and is something you can share.   Employment and having access to work for people with multiple sclerosis, particularly the younger population, it is shamefully lacking attention. Not working affects our mental health really badly. But what if it were different? What if we had access to the support, to tools to manage our workday and to inform employers working to the best of our abilities? We could stay earning, boost our cognitive function, get to fulfil our ambitions and save money for our future. Would you like to get back to a suitable work position? If not full-time, perhaps part-time, 10 hours a week? For businesses it is about retaining loyal staff, having systems in place to support people with illness amongst staff and encourage diversity. For policy makers it is getting real about the ‘welfare trap’, having a system that is fit for modern purposes and supporting people who can’t work. Remember, it takes six people working to pay for the pensions of one retired person.  We are going into a future unprepared. There is still time to make changes to have workplaces that meet the needs of a diverse workforce, welfare systems that encourage, not punish, and society that views employment as a part of treatment outcomes. People with diverse abilities need to have access to work. Check out Kanchi attitudes and EMSP Believe and Achieve Project Work is rehabilitative and the right work is good for our health. Access to opportunities changes lives; it can restore confidence and allows us to reimagine how to fulfil our dreams. All we need is for others to catch up. If I know one thing, we are great innovators and we can influence change. I ask you to get this issue into the public eye, share your work experiences (great, bad and desperate) with me on Twitter @emmadragon and start the conversation. As we are working on changing the world, do something today that fulfils one of your ambitions. It is the accumulation of many great little dreams that makes up the big changes. 

    Author: Emma Rogan - 26 Jun 2014

  • Photo for article:  Access all Areas

    Access all Areas

    Ah, public transport… Train stations without elevators or escalators; Buses with seats for elderly or disabled people; Crutches or walking sticks you want to throw from the train right into the Irish Sea. We’ve all been there, needing escalators instead of high, rusty, wobbly, wet and windy staircases over train tracks. Sure, public transport in Ireland is slowly moving into the 21st century, but still… not fast enough because people with physical disabilities need more. Soon after moving to Ireland in 2002, I had a climbing wall accident in one of Ireland’s universities. Jumping from a decent height on the floor made me yelp like little Simba from the Lion King. Result? Crutches for eight weeks. Nice is different. Travelling to work by train was another matter altogether. Scaling train station staircases looked like Mount Doom on a good day. Because I had never used crutches before, people walking the stairs behind me were rather pushy, literally. Three years later, and now with MS in my life, I decided to travel to work by bus instead when it made me all wobbly on my knees. Walking stick instead of crutches. Ouch! Remember those seats on Dublin Bus that have stickers on the windows saying “reserved for elderly people or people with disabilities”? Yes, those seats. In theory. Quite regularly taken by able-bodied people. In practice? Another ouch! One morning, after yet another night of nerve and MS DMD injection pains, my way of hopping to work was with a walking aid. The bus was full of people, including the seats reserved for people like myself. At least, I thought so. There I was, walking stick very visible for people to see that I wasn’t exactly Usain Bolt. Big, black rings under my eyes made me look even worse. People should have thought “hmm, this girl does look ill, alright. Let me stand up and give her my seat.” I asked one of the girls occupying those seats if I could please have hers. She kept staring in front of her. I asked her again. Same thing. Tears welled up in my eyes because everyone sitting downstairs on the bus saw my plight and need, without doing anything about it. One last time I asked her. The girl shouted at me “Yeah, yeah, you can have my seat!” followed by a good old insult. Nice is different, at least in my world. At this stage, I cried of pain, physically and mentally. I thought “Do I really have to walk with my coffin under my arm to get a seat when I’m physically leaning on a walking stick while holding the handrail as if it was my best friend?” People just kept on staring at me, not standing up themselves and looking at me as if I was a stand-up comedy or hidden camera act. I was hurt in my mind because when growing up, my mom taught me to stand up when elderly or pregnant women got on the bus when there were no empty seats left. Why did I have to beg now to get the same result and when I am clearly in need of a seat?  Result? It made me use the train again because at least on the train, people stood up to give me their seat, even when I had to scale those wet, iron-wrought, wobbly staircases. So whether it’s physical or mental access in train stations or buses, access can be hard to obtain. People with disabilities shouldn’t have to beg, steal or borrow seats reserved for disabled people. I still stand up when elderly people need a seat on the bus, even when I need a seat myself. I know what it’s like to desperately need a seat on public transport without having to get into a fight. When people see a walking stick, wheelchair or crutches, people do not use them in vain, just to get a seat on a bus or train. More than likely, they really are disabled. A mind-shift is therefore required both in people’s minds as well as in new, architecturally advanced creations. Access all areas? Keep on building bridges, but let’s open our minds and hearts. Please...  

    Author: Willeke Van Eeckhoutte - 19 Jun 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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