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

  • Photo for article: Reporting to Your Healthcare Team

    Reporting to Your Healthcare Team

    Something I haven’t thought about in a while is the importance of accurate reporting to my healthcare team. I'm not saying that I tell blatant lies or misleading information but I often find that when trying to remember six or eight months of information, I get it all mixed up. The average clinic visit is about 12 minutes- that is a short amount of time to fit in all the information you need to share with the team! How long do your clinic visits usually last? How long do you wait between clinic visits? When I think back on issues, I tend to forget the severity of it at the time. Let's say, I rate something a six out of 10 today, I could remember it in a few months time as a three out of 10. Time clouds the memory and it leads to inaccurate reporting.  I used to keep a notebook where (I kind of) kept track of my symptoms and side effects. The problem with that for me was… I could never find the notebook! Do any of you do anything similar? I know it might seem like the issue of accurate reporting isn't overly significant, but the more information the team have, then the better the decision they can make. Accurate reporting leads to better outcomes. I have been using an app called SymTrac to keep notes of my symptoms. Somehow, I find my phone a lot easier than a notebook! It's a key tool for me now, so I find it really useful and simple. Instead of having to remember everything, I let SymTrac do it for me. Do you use anything similar? Slightly off point here, but is anyone else concerned with the idea of passing all your information to the Neurologist in 12 minutes and having to make decisions in such a short space of time? In my ideal little mind I would like to submit all this information in advance of the visit so... 1) The 12 minutes could be used more effectively   2) A little more thought (or time at least) goes into the decisions. Maybe I'm completely off the mark, but it could take me 12 minutes to decide between Chinese or Indian takeaway, so the idea of making decisions regarding my health in that narrow timeframe just doesn't sit well with me. Thanks for reading.  Aoife

    Author: Aoife Kirwan - 26 Feb 2015

  • Photo for article: Multiple Sclerosis and Lent

    Multiple Sclerosis and Lent

    The View From Here: Opinions from a Life With MS 'As the faithful, agnostic and even some non-believers look at giving up a luxury for Lent, Blogger Trevis Gleason reflects on MS and the season' It may seem quite far from the mark that a non-believer has taken the opportunity of the liturgical calendar flipping once again to the season of penance and atonement to write a blog entitled ‘Multiple Sclerosis and Lent’. I intend not to offend as I do so. With many – from the faithful through the agnostic and even on to some non-believers – using these 40-odd days to abstain, religiously or not, from some luxury I figured I was wading into only mildly dangerous waters. People with MS are no strangers to “giving something up”. More accurately, we’re all-too-well acquainted with something being taken from us. Mobility, career, sensation, sight… the list of things we’ve had to learn to live without (or with diminished faculties) is longer and more painful than most would rather consider. Like the season, however, what we’re doing without isn’t the real focus now; is it? Those who chose to ready themselves for the coming celebration through self-denial use this penitence as a method of spiritual focus, not as a focus itself. So to can living a life with an ever expanding list of disabilities is about using something we do not have in order to focus our energies on using what we do retain to better effect. Time for the inevitable case in point; If one gives up their daily fancy coffee for Lent and only focuses on the cravings for and the piety of doing without the luscious beverage then the “for Lent” part of the exercise seems devoid of purpose. Were this person to use the passing of each of their favourite coffee stands to reflect upon their reason for the self-inflicted abstinence and, perhaps, take the daily cost and put it to use as a donation to a worthy cause, then the act takes on higher meaning. So too would the simple focus on and bemoaning of the things that MS has taken from us if we don’t do something with that experience. If MS has taken away our ability to perform our career (as it did with me) in the same manner and we don’t use the newly available time to make a difference in the world around us (even if it’s just the world within our home) than we are missing an important opportunity. I am not (NOT) one who sees anything about MS as a blessing. I am not one who will give MS credit for anything good in my life. “MS didn’t teach me anything,” I’m oft to say, “but I’ve been a good student.” If, like the successful Lenten observer, we are able to turn not towards the pain of loss (which will still exist no matter which way we turn) but away to the opportunities to use it to propel us toward something good then we will find some joy and celebration in every day. If not, we will simply be the person that nobody wants to talk to because we can’t get past the fact that we’ve missed yet another tall, skinny mocha and we’re going to let it ruin everyone’s day… not just ours. I welcome your thoughts on how we can all turn away from the negative (which will not go away) and towards doing something with the experience. Wishing you and your family the best of health. Cheers Trevis My book, Chef Interrupted, will be available on March 1, but you can pre-order your copy now on Amazon. Follow me on the Life With MS Facebook page, on Twitter, and check out TrevisLGleason.com

    Author: Trevis Gleason - 19 Feb 2015

  • Photo for article: An Open Letter To My MS

    An Open Letter To My MS

    Dear 'my' MS Funny, that I call you mine. I'd prefer to disown you, or that we had never met. Most relationships come about by some sort of mutual consent. But you. You just landed in on me three years ago, without an invitation. Despite the hostile reception you received at the time and since then, you couldn't take the hint and just go. Although you are always there, I don't like you any more than the day that I first encountered you. I'll never be comfortable in your company.  But I've done my best. I've been more than generous to you. I've nurtured you with a diet of good food, exercise and clean living (most of the time). I inject myself into my thigh for you once a week. It bloody hurts and the flu like symptoms that follow the following day aren't much fun either. All of this without gratitude or reward.  The thing that I don't really don't like about you is that you are a spoil sport. You hate seeing me having fun. You really know how to pick your moments, don't you? Over the last week, you have hung out of me and drained me, while so many lovely things have happened around me. The children going back to school, visiting friends with a new baby, friends calling over to watch a match and have a few drinks. In the midst of all this loveliness, I've found it hard to just be in good form. To enjoy simple things. I'm going through the motions, but it feels like I'm not there. I almost feel like I am having an out of body experience. I'm eating food, but not tasting it, hoping to eat my way through the nausea. My senses are super sensitive, with noise driving me crazy. In a house with two seven year old, that's not easy. I sound like a broken record asking the children to stay quiet because I can't bare their boisterousness.    The busiest times of the year for me is February and September! But you know that, don't you? You have been on my back all week, making it all more laborious. Could you not just leave me alone, until after next week? Or maybe until I'm 75? Or at least until the children have left home? I resent what you have done to me. I resent what you have done to my brother too. You have one sick sense of humour. I know that you treat others a lot worse than me, but today, I don't take any consolation in that.  You and me will never be friends. Hopefully tomorrow will be a brighter day and I'll bounce back and be philosophical about it all.  But for now my MS, I just want to give you a two finger salute.  Yours sincerely, Lucina 

    Author: Lucina Russell - 12 Feb 2015

  • Photo for article: Waiting on Tests Results!

    Waiting on Tests Results!

    A few months ago, a letter arrived from the hospital. I ripped it open- “an appointment has been arranged for you to attend the Ocular Toxicity Clinic. In this clinic, potential ocular side-effects you may have from the medication you are taking will be assessed”. I know that they are checking for Macular Oedema, which occurs when fluid and protein deposits collect on or under the macula of the eye, causing it to thicken and swell. Yikes! First my noggin and now my peepers????? The day of my test has arrived. This time, I have stuck with the literature the drug manufacturer gave me. I have resisted Googling Macular Oedema in case I see too much information on a condition I don’t know I have yet. My bag of worries is full enough as it is. The booklet is just about right- informative but not overwhelming. The important information section tells me that there is a 4 in 1000 chance I am affected. So, in a room of 250 people, one poor sod will have it. I read in the paper the other day that scientists say that “Most causes of cancer are the result of sheer bad luck rather than unhealthy lifestyles, diet or even inherited genes”. Though poor lifestyle can add to the “bad luck” factor, it still boils down to chance- a roll of the dice. How unfair is that? I really like the drug I am on at the moment. I would say that the side-effects are minimal compared to the other drug I tried. On old drug, I spent three years feeling wretched once a week for the entire day.  It was depressing to know in advance that I was going to make myself feel so bad to keep my MS at bay. New drug and me have a much more functional relationship. We are out of the honeymoon stage now and I am daring to think that this one is a keeper. I really hope that my eyes don’t throw a spanner in the works today. Having MS makes me not take my body for granted. I didn’t give my vital organs a second thought when they were all performing as expected. Now, I investigate ways to keep my brain and body as healthy as possible for as long as I can. Some of it is so obvious; it reminds me of the Dumb Ways To Die video my kids love. Apart from not poking a stick at a grizzly bear or selling both kidneys on the internet, I need to be aware of how external factors like stress, diet and exercise can make my MS symptoms worse. I’m not saying that I can avoid bad luck- nobody can, but I can decrease the chances. The appointment is over now. A kind lady with a gorgeous Scottish accent asked me to look at lights in a machine. She took two pictures of my left and right eye. The pictures will be reviewed and I will be informed if they find anything. She told me that I will have to come off my MS drug if I do. As tests go, it was non invasive and punctual but I still get that sinking feeling when I enter the building and a huge release when I leave. “Sorry Macular Oedema! Bag of worries is currently bursting at the seams. You will have to go to the back of my thoughts- maybe emerging when I see a letter from the hospital or can’t sleep. I am definitely not Googling you, although I will ask my friend who is on the same drug about you.” Hopefully, luck will be on my side and I am clear. Not sure what I will do if I’m not. How do you manage when you are waiting on test results for your MS? Any tips would be appreciated!  

    Author: Joan Jordan - 05 Feb 2015

  • Photo for article: An MS Mission Statement

    An MS Mission Statement

    The View From Here; Opinions from a Life with MS 'Using a popular business technique to lay out a mission plan for a life with MS can help us see over multiple sclerosis' We may all have used, at one time or another, different mottos, slogans, catch phrases or mantra to get us through a tough patch of living with multiple sclerosis. I know I have “Hope without a plan is just a dream” has helped me get off my backside and start moving toward a goal many a time. If I really think about them, however, the ring a bit hollow and serve as faint cheerleaders when it comes to the day-to-day grind of living with MS as well as when I have to make a big decision. Like in many parts of my life with multiple sclerosis, I look back to my life before MS for answers. In business, many successful organisations use a mission statement to define themselves, their reason for existing and to lay out a measuring stick by which to judge strategic decisions and potential moves. Mission statements can seem rather vague at first but are meant to sum up hopes and values in a short, bold statement. If, for example, a restaurant chain has the mission statement; “To provide entertainment and joy through, food, music and art” and someone suggests that they should remove the paintings from the walls to save money, you can see how the mission statement can help guide the decision of the company. But let’s not get hung-up on corporate mission statements. How about developing one for yourself? I’ve chosen “To find my limits, to press them and then to live within them” as my mission statement. This helps me to keep pushing when I feel I may be complacent, it allows for me to acknowledge that my abilities change and it encourages me to find new life and joy even if I can’t do the things (or do them the way) I used to do. On a ‘bad’ MS day my MS mission statement can simultaneously help me to push myself and allow me to stop pushing. If I employ it well (and I don’t always do that) it guides my decisions and helps me to live both good days and less-than-good days to their fullest (or nearly so). Do you see the difference between a motto and a mission statement? Have you ever thought of an MS Mission Statement before? What might yours be?     It seems a good topic for the first month of the year. 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 - 29 Jan 2015

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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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