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

  • Photo for article: Writing a CV

    Writing a CV

    Three years ago, my computer died a sudden, premature and grizzly death. No warning! Just gave up the ghost during a Google search. I lost EVERYTHING! Apart from teaching me the hard way to make regular backups, I had to embark on a treasure hunt to recover any paper copies of important documents I had lying about. This Tuesday, somebody asked me for a copy of my C.V. Holy Smoke!!!! That hadn’t happened in a long, long time. I racked my brains to think where on earth I could find a recent-ish copy of my working life’s achievements. I cursed the dearly departed laptop and eventually remembered a memory stick I used to always keep with me back in the days when I worked In I.T. I dusted off the memory stick- located in the pocket of an old business suit (shoulder pads were in then!). The green light flashed when I stuck into the USB port of my new laptop. Bingo!! There was my resume in all its glory. All three pages of it. I scanned through my life’s achievements - all the feathers I had in my cap. “Hang on a minute! This document is over five years old….. I haven’t added a single thing to it since I got diagnosed with MS”.   My Career took a complete nosedive - cartoon style when I got ill. Picture the scene: “Wile E. Coyote (aka my career) is running, a thousand miles an hour. He looks down - realises he is in fact running on thin air. Perplexed, he gazes at the camera and then plummets to a grizzly death. A puff of dust confirms his fate as he disappears into the abyss.”  Ouch! It made me feel sad to read all about my pre-MS life. The statement of my worth. What I used to be capable of. MS had taken so much: my confidence, my career, my financial stability and my hopes. I had blamed the untimely demise of my computer for my ancient CV but truth be told; I hadn’t touched it in half a decade. I couldn’t bear to think about how hard I had worked on my career and how it had been taken away from me - without warning! I had committed that I was going to update my resume though - so I decided to bite the bullet. Sooooooooooo, what HAD I achieved since I was diagnosed with a chronic illness? In 2012, I didn’t leave the house for 6 months. That must show persistence and determination. I have travelled extensively - visiting the many hospitals Ireland has to offer. That must demonstrate a will to travel. I get by on half of what I used to. How is that for excellent budgeting skills? I manage difficult flu-like symptoms with a can-do attitude and I am a whizz with a syringe. It’s still me. Overachiever and proud of it! I need to dust off the CV (and me) and get back to chasing that pesky Roadrunner. I’m not capable of doing the things I used to but I’m sure that there is something useful I can do - with a little support. I don’t want to hide the fact that I have a chronic illness - even though I have been warned that I won’t make it past the interview stage if I don’t. I am optimistic that I will find the right employment to suit my disability. I believe that the right employer is out there. But then again - I also believe in “True loves kiss”. We will see! Simon Harris gives me hope in his Irish Times Article when he says that “we cannot continue to sideline people with disabilities. Instead, we must enable them to fulfil their potential and make their contribution to society by putting structures in place to help them access the workforce and pursue the careers of their choice.” Wish me luck! I will let you know how it goes!

    Author: Joan Jordan - 31 Jul 2014

  • Photo for article:  The Importance of Focus

    The Importance of Focus

    We need 'focus' in our everyday lives to achieve our goals or targets. We need self-discipline to stay on track. Our battle with Multiple Sclerosis is a never ending battle and there are very few lulls in the fighting and because of that we need focus more than most. The need for focus begins with little things, with attainable targets. We need 'our little victories' as Claire Mitchell wrote in her recent blog. The longest journey begins with one step. Take the first step and set yourself a target, the second step is to set a route plan to reach the target and the third step is a celebration having reached your goal. These two lines from the poem ‘Don’t Quit’ define focus in my opinion ...'when care is pressing you down a bit, rest if you must, but don’t you quit'. We need our little victories to encourage us to keep going. Start small with realistic and attainable targets. There is no point in saying that I am going to walk one mile every day as an immediate target. Start small. I will walk 100 yards a day for the next week and then increase it to 200 etc. Re-assess your goals on a regular basis and don’t be afraid to downsize. Work within a comfort zone but strive to move outside of it. Stay mentally strong because very often mental strength is more important than physical strength. Decide on your goal. Weigh up the benefits of reaching your target and consider the disbenefits of inaction. Seek the help of a professional in deciding the route to your target and choose a realistic time frame within which to achieve it. Unrealistic targets or timescales will only disappoint you and this will ultimately break your determination and destroy your focus. Keep a daily record of what you achieve and this can help you determine whether you are doing what you should be doing. This is an instance when more than the thought counts. There are a number of different words to describe focus when taken in the context of this blog; self discipline and perseverance being the two that I like most. Focus is only important if you have set yourself a goal, a target to be achieved or a destination to be reached. Thus, if you don’t have a target you can never reach it. An ill-defined target is of no use. You cannot set out a pathway to achieve a goal unless you have set a goal. Putting it at its simplest; if you want something and don’t have the cash to pay for it you save. If you save enough you get your desired product. (Borrowing doesn’t count!!). While you are saving there will be tough choices to be made; if I buy this I can’t save that money and my target is still out of reach but if I don’t buy and save my target is nearer to my grasp. Some authors on the importance of focus, recommend telling people about goals in the hope that they will then act as monitors of your progress. Personally, I believe in keeping my goals to myself, however I do keep a daily log. Honesty with oneself is very important, dishonesty is only fooling yourself and ultimately leads to disappointment!  

    Author: Declan Groeger - 24 Jul 2014

  • 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

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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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