tag:blogger.com,1999:blog-45848345668210384982024-03-13T14:56:36.669+00:00Multiple StupidnessEddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-4584834566821038498.post-713861691395920732014-07-09T15:00:00.000+01:002014-08-12T16:49:37.044+01:00Three Years With Multiple Sclerosis<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8ClgwQCJTyBEXuuIFUx7XaT4bJLgxp8EsKBGCE1RGcmiJYJ16LEX_rdzXgqYyMAFQfg8sOmp74jYQFM0BnY8lRDT134_gZNJqqo2bBvolImQkJdqCxexY6Bfy8qKTTJ9IAdCboZ51vFs/s1600/IMAG1541+(1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="A selfie of a man (me) in sunglasses" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8ClgwQCJTyBEXuuIFUx7XaT4bJLgxp8EsKBGCE1RGcmiJYJ16LEX_rdzXgqYyMAFQfg8sOmp74jYQFM0BnY8lRDT134_gZNJqqo2bBvolImQkJdqCxexY6Bfy8qKTTJ9IAdCboZ51vFs/s1600/IMAG1541+(1).jpg" height="364" title="" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aren't I a little old to be taking selfies? Probably. But who else is going to do it?</td></tr>
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<span style="font-size: x-large;">Diagnosed with Multiple Sclerosis: Three Years On</span></h2>
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Last month, I arrived at the three-year mark since <a href="http://multiplestupidness.blogspot.ie/2012/09/my-story.html" target="_blank">my diagnosis with multiple sclerosis</a>. <i>Three years! </i>For some reason, this anniversary is hitting me harder than either of the previous two. It's possible that I've now entered some strange post-diagnosis limbo, as I'm not sure if I can still classify myself as <i>newly diagnosed. </i>I still feel newly diagnosed, and I still feel I'm only just coming to terms with my diagnosis, but if I'm <i>not </i>newly diagnosed, should I still feel this way? Or perhaps this three-year milestone is hitting me because things have settled down somewhat - my treatment has settled, as have my symptoms, and I'm now in something of a routine. And ... <i>bleugh</i> ... I still have MS. Yeah, I was really hoping that at some point it'd all just go away. But it hasn't. Which gives me a lot of time to reflect and dwell on where my life is and, more importantly, where it's going.<br />
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How Am I?</h3>
Well, apart from the old MS, I'm very well - thanks for asking! <a href="http://www.multiplestupidness.blogspot.ie/2012/11/my-current-ms-profile-name-eddie-age-33.html" target="_blank">My symptoms haven't really changed</a>. I still suffer considerable neurological pain, primarily in my legs. This comes and goes and, apart from when it gets really bad, I consider this to be one of my lesser symptoms. To some degree, I can fight the pain; I can try and distract myself from the pulsating saw blade that reverberates deep within my muscles. It's only when it gets really bad, when it overwhelms my senses and ability to push through it, that it really gets me down. Thankfully, this doesn't happen too often.<br />
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The worst symptom, however, <i>the worst by a sclerotic mile</i>, is the mind-clouding, focus-sapping, energy-devouring fatigue. And no, this hasn't got much better. It comes and goes, so that some weeks I feel very well, while for others it feels like I'm rarely out of bed, and when I am I'm like an extra from <i>The Walking Dead. </i>Unlike the pain, there is no fighting against or pushing through the fatigue. I have to submit to its mercurial will - when I don't, I invariably make myself worse. A few months ago, I kept a sleep diary for my neurologist and over a two-week period recorded sleeping on average between 16-18 hours a day. Granted that was a bad spell, but even during good times I can sleep an inordinate amount. During my most recent appointment, the neurologist told me it was the worst case of MS-related fatigue he had personally dealt with. For everything, this is incredibly challenging - for your mental health, your spirit, your practical responsibilities. With fatigue, it can feel like your life is being sucked away into nothing.<br />
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There are other peripheral symptoms, some of which are probably manifestations of the fatigue, which can make me feel very <i>squiffy</i> at times (that's the best word I've come up with for this - for when I feel very MSey). It's a mixture of everything - my balance feels off, I become clumsier, I have difficulty remembering things, and I can't concentrate on anything. My tolerance for noise, activity and people also diminishes considerably when I'm squiffy. In other words, I become a grumpy git. Unsurprisingly, I <u>hate</u> it when I feel like this.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK-dmfJJi-dgR-V2BMCBYgTO7t3JLm8KaTEtFa4sweBiGhQlWTzE2Qu_7D8E4LIdFo5c8mjfzXN8H4GYtdPkMoZSmbt_3u72mhJBHxXnIjn8z5zJw5SuNa0BSOq5s83mdR4pcPXWxairc/s1600/Holiday+in+Romania.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="My wife, daughter and I in Romania" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK-dmfJJi-dgR-V2BMCBYgTO7t3JLm8KaTEtFa4sweBiGhQlWTzE2Qu_7D8E4LIdFo5c8mjfzXN8H4GYtdPkMoZSmbt_3u72mhJBHxXnIjn8z5zJw5SuNa0BSOq5s83mdR4pcPXWxairc/s1600/Holiday+in+Romania.jpg" height="372" title="" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My wife and daughter cleverly synchronise blinks while on holiday in Romania</td></tr>
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What Am I Up To?</h3>
Oh, y'know, so much! A bit of this, a bit of that ... all kinds of things! Well, I wish it was like that, but I do try to keep myself as busy as my energy levels allow. I'm still not working, which is a source of major frustration. As someone that has always worked, and enjoyed his work immensely, I do the miss the routine and excitement that my job gave me. While in the beginning I was hopeful of making a full recovery and returning to my old profession, I now think this is unlikely. From my own research and discussions with my doctors, it would seem that any symptoms that have persisted for as long as mine are likely to be permanent characteristics of my MS. If that's the case, I don't think my former career as a private investigator is suitable or manageable. I am, however, hopeful of finding a new line of work, and am making active investigations to doing so now.<br />
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So what do I do with my time? Well, I write another blog called <i><a href="http://www.lexicolatry.com/" target="_blank">Lexicolatry</a></i>, and I'm delighted to say that that project has rescued my sanity a thousand times over. When I first fell ill, I couldn't read well due to cognitive difficulties - however, I was able to read short amounts, and so I decided to slowly work my way through the <i>Shorter Oxford English Dictionary</i>. The blog charts my progress, and each day I post a new word of interest and a short commentary on why I find it interesting. The blog has done well, has a core of regular readers and commenters, and was even <a href="http://www.lexicolatry.com/2013/10/the-2013-blog-awards-ireland.html" target="_blank">nominated for an award</a> last year. To any of you that read <i>Lexicolatry - </i><b>thank you</b>! I really can't express to you quite how much help that blog has been to me during difficult times, and your readership, comments and insights have been a huge part of that. And if you don't read <i>Lexicolatry</i>, do please <a href="http://www.lexicolatry.com/" target="_blank">have a look by clicking here</a>.<br />
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Other than that, I've taken up archery. I miss sport a lot, and although I've tried several times to get back into playing football, I just haven't been able to do it without making myself worse. Archery seems a good choice because it gets me out of the house and is well within what I can comfortably manage, even if I don't get out to do it nearly as often as I would like. I also try and exercise regularly using the gym at the local MS centre in Galway. This has been really, really useful and I would encourage anyone with MS to join their local MS society for this reason. I participated in a three month programme with the University of Limerick studying the benefits of exercising using a Vibroplate machine, and that was organised through <a href="http://www.ms-society.ie/" target="_blank">MS Ireland</a>. I haven't yet met with the lead researcher to discuss my final results but, despite it being hard work and (at times) painful, I felt the exercises <i>really </i>helped me. I'll write a post on the subject when my final results are in.<br />
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Finally, of course, there is my family. My beautiful daughter is five now, and my lovely wife is as caring, patient and supportive as ever. And, our big news, we have another baby on the way! If that doesn't prove there's life in this old dog yet, what will? And yes, to all my friends and family, don't think I didn't notice that raised eyebrow when I told you we're expecting a baby, the eyebrow that said: "Really? You can still ... I mean ... you're still able to ... even with? ... well congratulations!" Our little boy is due in October, and I find it both terrifying and exhilarating in equal measure.<br />
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Where Am I Going?</h3>
The future is something I spend a lot of time thinking about and, to be completely open, is something I find very frightening. I've always spoken about the horror of being told I have an <i>incurable </i>and <i>degenerative </i>disease, but it's during the quiet moments alone with my thoughts that it can really get to me. How will I cope if I become seriously disabled? How will my family cope? How could I burden them like that? If I struggle now, how will I cope if a serious relapse makes me even worse?<br />
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When my mind wanders these dispiriting paths, I remind myself that the truth is blunt: I can't change my future. Of course, I can maximise my chances by maintaining my treatments, living healthily and getting as much exercise as I can, but beyond that it's out of my hands. Therefore, I must make the best I can of the present and not become bogged down with the <i>what-might-be </i>trains of thought. Rather, I try my best to remain optimistic, and I fight the occasional flashes of despondency that surface from time to time.<br />
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We're expecting now, of course, so that will dominate our lives for the foreseeable future. I'm also considering a return to college with the view of training in a field that would accommodate my illness, perhaps in writing or languages. I also plan to write more on the subject of MS. A number of people have contacted me saying that they appreciated this blog, and asking me if I would be writing more. Well, yes, I will be, including writing about my own experiences and writing about the (frequent) news that surfaces regarding MS research. If you're not already a subscriber, there's an email subscription box so you can make sure you receive every post.<br />
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What Have I Learnt?</h3>
Three years of living with MS has taught me a lot. For one thing, I'm learnt not to expect others to understand my MS, or what it's like for me and my family. The blunt truth is that unless you have MS, and unless you have MS with the same symptoms as me, you can't - <i>you just can't</i> - understand what it's like. And that's OK - I don't expect you to. I now try not to judge or become too frustrated when others <i>think</i> they do, or say something insensitive, unhelpful or just downright stupid. In learning this lesson first hand, I think it's made me more aware of this problem, of the impossibility of truly understanding the struggles and hardships of others. In this regard, I think that MS has made me into a better person.<br />
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And finally, I've learnt (or am learning) to live in and appreciate the present. While the immediate future might be full of uncertainties and worry, if I allow my mind to pull these anxieties into the present, it will doubtless ruin whatever I have now. Therefore, it's a matter of making the best of what I have and what I can do, rather than fretting about what I don't and what I can't.<br />
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This three years hasn't felt like a long time, and I think I probably <i>am </i>still newly diagnosed. But the experience and lessons I've learnt in these three years makes me feel better equipped to deal with whatever the next three will throw at me and my family. And for this, I'm grateful and optimistic in equal measure.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4d_JIJG8HmvYrMfnlrBArAIwTtOz_lm4BKKNoFPJ9kOuB5DSoDESQrN67AiaTd68BRt6Y5weWsC-yjh2v1mr3k76x3wc4zSc1Pxcb1m-MKRYcfePYwoIjyIowkJf8XKome_5QeJquCJU/s1600/Archery.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="A man in a forest taking aim with a recurve bow " border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4d_JIJG8HmvYrMfnlrBArAIwTtOz_lm4BKKNoFPJ9kOuB5DSoDESQrN67AiaTd68BRt6Y5weWsC-yjh2v1mr3k76x3wc4zSc1Pxcb1m-MKRYcfePYwoIjyIowkJf8XKome_5QeJquCJU/s1600/Archery.jpg" height="360" title="" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">[Insert inspirational quote about aiming for your goals here]</td></tr>
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Please feel welcome to leave any comments in the box below.<br />
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'Best Blog Post' Nomination with <i>Blog Awards Ireland</i></h3>
This post was nominated in the <i>Best Post </i>category of the Blog Awards Ireland 2014.<br />
It's a public vote, so if you enjoyed this, please consider going to the <i>Best Post </i>list and voting for <i>Multiple Stupidness.</i><br />
<a href="http://www.blogawardsireland.com/best-blog-post-2014/" target="_blank">You can get there by clicking here</a>.<br />
Thank you!</div>
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Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com10tag:blogger.com,1999:blog-4584834566821038498.post-30364732109958605882013-04-29T14:35:00.000+01:002014-03-04T17:52:06.278+00:00How MS Fatigue Affects My Writing - A Short Essay<div class="separator" style="clear: both; text-align: center;">
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<h2 style="text-align: center;">
<span style="font-size: x-large;">What Keeps Me From Writing?</span></h2>
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My deficient brain is what most often keeps me from writing.</div>
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In the
past, it was all of the usual excuses: I was studying, and then I was working,
then I had a family and a child, then I was building a career, etc, etc, <i>ad nauseam</i>. </div>
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These
days, my life is very different. I still have a family to care for, but I’m not
working, nor building a career. Time is no longer an issue. I have plenty of
time for anything I choose, so I indulge myself in something I always thought
would come later in my life: writing.</div>
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However,
the same reason that keeps me from working or from following my career will
often keep me from writing too. There is something going on inside my brain
that affects my thinking, and it’s a truism that if your thinking is affected,
your writing is affected also. </div>
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Multiple
sclerosis (the disease with which I have been diagnosed) is so called because,
literally, multiple scleroses form in the brain and spinal column. <i>Sclerotic</i>, an adjective of the same
root, means, among other things, <i>hardened,
stony in texture</i>, <i>unmoving,
unchanging, rigid.</i></div>
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It is trying
to think through my sclerotic synapses that most often prevents me from
writing. My mind constantly has to take the long way round, pushing through
foam and fog and dense clouds of doubt and uncertainty. Where once there was
clarity and fluency, there is sluggishness and torpor; where once there were
bright, vivid memories, there are black voids of nothingness, empty holes in my
mind that frighten and disturb me.</div>
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It’s not
constant. For some reason, sometimes my brain seems able to return to a
semblance of its former self, and during these fleeting hours I dash out words
with a juvenile enthusiasm, gaily plucking adjectives and adverbs and verbs and
nouns from the darkest recesses of my memory and ramming them together in the
most ludicrous and haphazard fashion.</div>
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But it
always returns. It will again ache inside my head as I attempt to push through
the morass. I press my brain and try to squeeze out words and meaning, but it
dispirits and exhausts me. Struggling against it is in vain. With minimal exertion,
my synapses seize and an impenetrable darkness descends, choking off thoughts
and suffocating my words. I can do nothing but retreat to my bed for hours at a
time, hopeful that when I wake the darkness will have cleared.</div>
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While
it’s dispiriting to think about this (and even more so to verbalise it and put
it to paper), it’s also encouraging. It’s a reminder that, even now that I have
plenty of time, it’s still of utmost value, and must never be taken for
granted. Minutes of clarity must not be squandered, nor hours or days of
ability and energy. My time will be more focused – it has to be. That being so,
I can resolve that my time will be more productive than it ever was, than it
ever could have been, with my pre-sclerotic brain.</div>
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<i>I wrote this short essay recently after the subject of what keeps us from writing was proposed at a writing group I belong to. I intend to write a longer, more general piece too, as MS fatigue is something that's hit me hard; as one of the most common symptoms of MS, it's something that hits a lot of people hard. It's also one of the most misunderstood symptoms. The word fatigue completely fails to convey the reality, making it sound synonymous with being tired, or a bit low on energy, etc. This essay, however, was an opportunity for me to try and describe, during one of my more lucid periods, what the fatigue is actually like and how it impacts on something I love: writing. I hope you enjoyed it.</i></div>
Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com10tag:blogger.com,1999:blog-4584834566821038498.post-91161420616343695072012-12-23T21:24:00.000+00:002013-02-28T22:21:56.610+00:00Vitamin D Supplements Recommended<h2 style="text-align: center;">
<span style="font-size: x-large;">Little Missed Sunshine</span></h2>
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The night after I was diagnosed with multiple sclerosis, I sat up in my hospital bed for the entire night, feverishly scouring the depths of the internet on my phone for information on treatments, cures, remedies and therapies. Of course, being the internet, I found them in abundance, and I diligently wrote down notes so that I could question my neurologist when he did his rounds the following morning. Yes, he had told me that MS is an incurable disease, but <i>surely</i> if I just <i><b><u>searched the internet hard enough</u></b></i>, I would find something he had missed in all his years of medical training. When he arrived the following morning, I was ready and waiting, armed to the teeth with notes and scribblings on everything from dietary control regimens, curative creams, interventionist surgery and Shamanic Rituals. OK ... not the Shamanic Rituals, but you get an idea of where my mind was at during this time. </div>
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It was a necessary but somewhat disheartening meeting. He patiently sat and listened to me as I worked through my night's research, ticking items as I went and making notes from his responses. Before long, the conversation had acquired quite a predictable pattern: </div>
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<b>Me: So ... this one ... [I name some therapy that I've found on the internet].</b></div>
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<b>Him: Yes, I've read about that, but unfortunately the scientific evidence for its efficacy is very thin.</b></div>
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Occasionally, he wouldn't even be that generous toward a given therapy, and his answer would be that there's <u>no</u> scientific evidence or, worse still, a particular treatment is downright dangerous. I know some people will immediately assume that he was just rubbishing treatments that he wasn't familiar with, or hadn't been trained in, but this wasn't the case at all. With most, he was already familiar with them (rather than it being a complete unknown), he often had patients that were trying or had tried a particular treatment independently, and was often able to give specific reasons why the evidence for efficacy was poor ("in that study, the control group was very small" / "that's never been peer-reviewed" / "the initial results have never been replicated," etc, etc). </div>
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However, one of my questions did yield a positive result. </div>
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<b>Me: What about Vitamin D supplementation? </b></div>
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<b>Him: Yes, there have been a number of studies that show beneficial results from boosting vitamin D levels in the body. </b></div>
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Thus, having continued my research into the benefits of vitamin D, I've been taking a supplement daily ever since then. Has it helped? Obviously, I can't really be sure. I hope it has, of course, but it's completely hassle free, just one more small tablet in my daily assortment of tablets, and I didn't have to pay some nutter on the internet $50.00 to read a badly-written book about it.<br />
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Of all the vitamins that humans require, it would seem D is a trickier one than most to come by. It's often called 'the sunshine vitamin' due to the sun being the main source. However, if you live in the British Isles or Ireland, this poses a very obvious difficulty. Vitamin D is also found in certain foods, but it would seem that getting sufficient levels of it from your diet alone is difficult for most and not very practical. </div>
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<br /></div>
<div>
Interestingly, though, there have been a number of recent studies and news items espousing the benefits of a Vitamin D supplement generally, not just for those with specific medical conditions that seem to be helped by them. The British government recommends a vitamin D supplement to specific groups, namely: pregnant and breastfeeding women, children aged six months to five years, and people aged 65 and over. However, it also recommends such a supplement to these groups: </div>
<div>
<ul>
<li>People who are not exposed to much sun</li>
<li>People who cover up their skin for cultural reasons</li>
<li>People who are housebound</li>
<li>People who otherwise stay indoors for long periods of time</li>
</ul>
<div>
In fact, the Royal College of Paediatrics and Child Health (RCPCH) says that perhaps 25% of UK children are vitamin D deficient, and a recent report by the BBC suggested that half of the UK's white population, and up to 90% of the black and Asian population, are similarly deficient.<br />
<br />
This is of concern because a lack of vitamin D is linked to a number of diseases, including diabetes, tuberculosis, rickets (cases of which are on the rise in both Britain and Ireland) and ... you've guessed it ... multiple sclerosis!<br />
<br />
Below, I've linked several articles that you might find interesting on the subject of Vitamin D.<br />
<br />
<ul>
<li><i><a href="http://www.bbc.co.uk/news/health-20710028" target="_blank">Cheap Vitamin D 'Would Boost Health'</a></i></li>
<li><i><a href="http://www.bbc.co.uk/news/health-20710026" target="_blank">Action Needed on Vitamin D Levels</a></i></li>
<li><a href="http://www.nhs.uk/Conditions/vitamins-minerals/Pages/Vitamin-D.aspx" target="_blank">NHS Choices Vitamin D Fact Page</a></li>
<li><a href="http://www.mssociety.org.uk/ms-news-and-research/ms-research/potential-treatments/emerging-areas-of-research/vitamin-d" target="_blank">MS Society article on vitamin D and multiple sclerosis</a></li>
<li><a href="http://www.fsai.ie/faq/vitamin_d.html" target="_blank">Food Safety Authority of Ireland Q&A on vitamin D</a></li>
</ul>
<div>
<br /></div>
<div>
If you'd like to do some research into Vitamin D and whether or not you think it would be of benefit to you, these articles are a good place to start. It was recommend to me that I should try and get out in the sunshine when I can (with due concern given to not damaging my skin) and also to take a supplement. Naturally, your GP would be the best person to similarly advise you.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKXlUaELw5_fDVA8CyGKv7vI8PWQdL3FIuXN0y5AAchp5Dt-wCf3Hw1rKWRIDLSTkRsLt4b_ug4KmeGkFTGE3hNEf4DGwP5eSgAY9MfSL7Kl3bxgywGwmOGAYdjHO2_LIHrEqKmyzqS2Y/s1600/vitamind.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKXlUaELw5_fDVA8CyGKv7vI8PWQdL3FIuXN0y5AAchp5Dt-wCf3Hw1rKWRIDLSTkRsLt4b_ug4KmeGkFTGE3hNEf4DGwP5eSgAY9MfSL7Kl3bxgywGwmOGAYdjHO2_LIHrEqKmyzqS2Y/s640/vitamind.jpeg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some D-licious foods<br />
(it would seem taking a supplement does nothing for your joke writing skills)</td></tr>
</tbody></table>
<div>
<br /></div>
</div>
</div>
Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com3tag:blogger.com,1999:blog-4584834566821038498.post-74133085998467499182012-11-21T10:40:00.000+00:002014-08-06T18:45:10.159+01:00My MS Profile<h2 style="text-align: center;">
<span style="font-size: x-large;">My Current MS Profile</span></h2>
<div>
<br /></div>
<div style="text-align: center;">
<span style="font-size: large;"><b><u>Name:</u></b></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Eddie</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><u><b>Age:</b></u></span></div>
<div style="text-align: center;">
<span style="font-size: large;">33</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><u><b>Diagnosis:</b></u></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Multiple Sclerosis (diagnosed June 2011)</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><b><u>MS Sub-type:</u></b></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Unknown</span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><b><u>Current Treatments & Therapies: </u></b></span></div>
<div style="text-align: center;">
<span style="font-size: large;">Interferon beta-1b (self-injection, every other day)</span></div>
<div style="text-align: center;">
<span style="font-size: large;">Gabapentin for neuropathic pain relief</span></div>
<div style="text-align: center;">
<span style="font-size: large;">Paracetemol for general pain relief</span></div>
<div style="text-align: center;">
<span style="font-size: large;">Vitamin D supplement</span></div>
<div style="text-align: center;">
<span style="font-size: large;">A new course of physiotherapy three times per week</span><br />
<span style="font-size: large;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3dRGdIIK_hwBW4ZK362knJCNeGgOouLr4_odfTHKR8DR2TGwIaX5FE7O1GBZ3ndRmPxGMifcwrcHaRW7CsfJuBUYtegUJ4ASl7y1ZPq3viKfxb7RaBL6Czf1kW0Nl-F_L7LZxatESb4o/s1600/download.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3dRGdIIK_hwBW4ZK362knJCNeGgOouLr4_odfTHKR8DR2TGwIaX5FE7O1GBZ3ndRmPxGMifcwrcHaRW7CsfJuBUYtegUJ4ASl7y1ZPq3viKfxb7RaBL6Czf1kW0Nl-F_L7LZxatESb4o/s400/download.jpg" height="297" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is me being 'fatigued' in bed. Honest !</td></tr>
</tbody></table>
<br />
<div style="text-align: justify;">
<span style="text-align: left;">Having detailed my journey from initial symptoms to my diagnosis, quite a few people have been asking how I am now, some 18 months after I first developed symptoms. </span></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Well, I'm pleased to say that in many respects I do feel a lot better. Some things, such as balance, still don't feel quite right, but they're a long way from where they were when I first got ill. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
My symptoms, however, have changed, and the two predominant ones I have now are <b>pain </b>and <b>fatigue. </b></div>
<div style="text-align: left;">
<b><br /></b></div>
<div style="text-align: left;">
I've been pondering over this for some time, because those two short words don't even begin to encapsulate what both of those symptoms entail, even if I write them in bold, and even if I write them in (gasps!) bold italics ... capitalised!</div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><b><i><u>PAIN & FATIGUE</u></i></b></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><b><i><br /></i></b></span></div>
<div style="text-align: left;">
Nope. Doesn't even come close! It somehow feels as if the words do a disservice by completely understating the effect these symptoms can have on your quality of life. That being said, they both warrant posts of their own, so very soon I will write specific posts on these symptoms, and others, in the detail that they require to express what they are, and what effect they can have on your life. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
However, I am pleased to report that in many ways I am feeling well. I'm trying to keep myself busy and work within my current capabilities as I continue to improve, which can be a challenge, as if there's a day when I'm feeling particularly well I can have a tendency to go a bit nuts and then pay for it in the coming days or even weeks. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
I've committed to a couple of projects that I can fit into small parcels of time. These are:</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
1) <b>Losing weight</b> (I would like to get down to 17 stone from 19)</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
2) <b>Learning Romanian</b> (I've apportioned 20 mins a day)</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
3) <b>Reading and writing more </b>(still difficult for me due to fatigue)</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
There. I've put it in writing. I'm doing those three things. Slowly and surely. But I've put it out there now and there's no going back! Feel free to ask me in a month's time how I'm doing with those projects, although if I've bailed on all them, expect the bitter retort <i>'I've got MS, dammit! Give me a break!'</i>. Just kidding. Maybe : o ) </div>
<div style="text-align: left;">
<span style="font-size: large;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmwq5ZagAULSANy_xEpLHpiev1yJSC6pVSgGyzUuz9uE_CmlL3TBqjPNAVNIASTO-naFXKbZeyNYepGu06I9ZDrIIsUb0X3ylW9f53AVfCU-c6FYK13BJkMZhqcPwiLQNGbkvfyHAVnaE/s1600/old_fluorescent_light_550x310.Par.0001.Image.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmwq5ZagAULSANy_xEpLHpiev1yJSC6pVSgGyzUuz9uE_CmlL3TBqjPNAVNIASTO-naFXKbZeyNYepGu06I9ZDrIIsUb0X3ylW9f53AVfCU-c6FYK13BJkMZhqcPwiLQNGbkvfyHAVnaE/s640/old_fluorescent_light_550x310.Par.0001.Image.jpg" height="360" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(Serious voice) This picture illustrates pain. As for why, you will have you wait until my cheerful post on pain itself, won't you?</td></tr>
</tbody></table>
<br /></div>
Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com3tag:blogger.com,1999:blog-4584834566821038498.post-30886500428688029152012-09-14T19:39:00.000+01:002012-09-14T21:21:42.000+01:00Montel Williams Interview on Larry King<h2 style="text-align: center;">
<span style="font-size: x-large;">Montel Tells</span></h2>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHXLnKeeip9sQohTn2KVQM-Yuq5rbkqcaDYA-NCP7292sNrXWM8SLzckeCfaRh-VmaCfJwmaGhTuidYuao3QkY-BjE1jy4MxOrB_9DtyxSTvU5wO3K2pgpqcXiOZl501sSGOaqSXDwdK0/s1600/montel.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHXLnKeeip9sQohTn2KVQM-Yuq5rbkqcaDYA-NCP7292sNrXWM8SLzckeCfaRh-VmaCfJwmaGhTuidYuao3QkY-BjE1jy4MxOrB_9DtyxSTvU5wO3K2pgpqcXiOZl501sSGOaqSXDwdK0/s400/montel.jpg" width="400" /></a></div>
<br />
When I first became ill, I scoured the internet for information on MS. Of course, this included YouTube, and there are probably hundreds of videos there concerning MS. Some are informational, some are testimonials and some are interviews or excerpts from programmes. Some are depressing and misleading, some are interesting and informative, and some are absolutely inspirational.<br />
<br />
One of my favourites is the interview on Larry King Live of <a href="http://en.wikipedia.org/wiki/Montel_Williams" target="_blank">Montel Williams</a>. I hadn't heard of him before I saw the interview, but he is an American talk show host who himself has been diagnosed with MS. As I watched it, it was wonderful not only because here was a man describing very, very similar symptoms to my own, but he was able to express things about MS that I felt, but had never been able to adequately verbalise.<br />
<br />
An example of this is the injection I take every other day. I hate taking my injection. I <i>hate</i> it! Why? It doesn't hurt particularly. It's take less than five minutes, and I don't really suffer side effects from the betaferon like I did in the beginning. So why do I hate taking it? Montel Williams explains it beautifully, and very quickly I started directing people to these videos if they really wanted a clear, articulate expression of what MS is like and, because my illness felt so similar to his, a little of what my experience is like.<br />
<br />
Videos are in sequence from top to bottom. I hope you enjoy : o )<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/coMMIlDXwGM?feature=player_embedded' frameborder='0'></iframe></div>
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<br />Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com2tag:blogger.com,1999:blog-4584834566821038498.post-38563677204730968362012-09-08T19:29:00.001+01:002012-09-14T19:16:11.344+01:00My Story<div align="center" class="MsoNormal" style="text-align: center;">
<h4 style="text-align: center;">
<u>
Background Check</u></h4>
<div>
<u><br /></u></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaA490mGNyHSKbSyrYLfjEG_sJGR4kFS7IFlRxsqrqLBEGYUO_yIszTw-BNwMKcqkkuinhnYFLl7DAxh9QkrwjANYjiuHxbWBAfr1FINo8OfBoDWan-gtPEqo3Af-BqGFDcnZZ_Fh-r34/s1600/DSC00060.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaA490mGNyHSKbSyrYLfjEG_sJGR4kFS7IFlRxsqrqLBEGYUO_yIszTw-BNwMKcqkkuinhnYFLl7DAxh9QkrwjANYjiuHxbWBAfr1FINo8OfBoDWan-gtPEqo3Af-BqGFDcnZZ_Fh-r34/s400/DSC00060.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A photo I accidentally took once while 'working a case'<br />
It's completely irrelevant, but I like it!</td></tr>
</tbody></table>
<div>
<br /></div>
</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
For those that don’t know me, I would like to introduce
myself, give a little of my background and explain how I came to be writing a
blog called <i>Multiple Stupidness.</i><o:p></o:p><br />
<i><br /></i></div>
<div class="MsoNormal">
My name is Eddie, I'm 33, born in Ireland to English parents and (since I was three) brought up in the UK. Due to this, I feel quite closely connected to both countries and throughout my blog I will reference information and articles that I think will be of particular interest to both Irish and British readers.<br />
<br />
At the tender age of 22 I married the most beautiful, caring and hard-working woman I've ever known, and in 2008 we were wonderfully blessed with our first child, a stunningly beautiful little girl (yes, I'm biased - get over it!).<br />
<br /></div>
<div class="MsoNormal">
For over ten years, I’ve worked as a professional
investigator, variously investigating fraud, tracing missing and absconding persons
and assisting with the gathering of intelligence on behalf of the legal
professional and other bodies. For the majority of this time, I operated my own business, but
since 2010 I was employed as a Field Investigator (that’s someone that works
‘in the field’ rather than an office, as opposed to someone that investigates
fields of the green or wheat variety … I resisted the temptation to employ any lame jokes about me
being ‘outstanding in my field’ and I suggest that you should too). It was an
interesting and challenging career, and I have many fond memories of it that
are not for this blog!<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Apart from being mildly asthmatic (another stupid disease), I’ve been fortunate
throughout my life never to have had any significant health problems prior to
this. My interests include writing, reading, music (I play the piano and bongos
… yes! bongos count!) and languages. So … that’s me … kind of. <o:p></o:p><br />
<br />
<br />
<br /></div>
<div class="MsoNormal">
<h4 style="text-align: center;">
<u>
So How is I at Where I's at? </u></h4>
<div>
<br /></div>
<o:p></o:p></div>
<div class="MsoNormal">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrLCnCcNmhE3qASNxwRjObyC27UkAOC-wEJSl-XDuGM0gWfkyMb7RkXxVyFgB13D4U146k4Jg85yRoh31PDruzwg8WtWEHtGwZw_fUAPCGOFs-e24NqwQhJn8OCxJ2-B0uQFVsSl0aQtA/s1600/Kikis+Wedding.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="491" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrLCnCcNmhE3qASNxwRjObyC27UkAOC-wEJSl-XDuGM0gWfkyMb7RkXxVyFgB13D4U146k4Jg85yRoh31PDruzwg8WtWEHtGwZw_fUAPCGOFs-e24NqwQhJn8OCxJ2-B0uQFVsSl0aQtA/s640/Kikis+Wedding.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me (far left) with my wife and daughter in December 2011<br />
(for clarity, any picture of me with a beard is <u>post</u> diagnosis!)<br />
<br /></td></tr>
</tbody></table>
In April 2011, on a very ordinary Saturday, my wife and I
had planned to spend the morning out with our daughter. On getting up, however, I felt somewhat ‘spaced,’
as if the world around me was floating somehow in my senses, and I had problems
balancing. I bowed out of our morning’s excursion and settled down to watch TV
on the couch. I had been working exceptionally hard for the preceding months,
and I put it down to being fatigued, and had few complaints about the prospect
of a morning in by myself, lounging in front of the TV watching <i>The Office</i> and <i>Frasier</i>.</div>
<div class="MsoNormal">
<br />
<o:p></o:p></div>
<div class="MsoNormal">
On the Sunday, I didn’t feel any better. It was very hard to
actually define what I felt – it wasn’t dizziness, nothing was spinning, I
didn’t feel sick … and yet I couldn’t balance properly and the world still had
a strange ethereal quality. I remember playing outside my daughter, shrugging
off the symptoms as best I could, and scooping her up from the ground and
lifting her into the air. As I did this, I was overcome with a very strong and
sudden sense of losing my balance, and it caused me to stumble. This was the
first point where I remember thinking: “Wow … something really <i>is </i>wrong.” <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Monday passed with no change, and
on Tuesday I gave in and went to see my doctor (something both the Irish and British mentality has always caused me to avoid … <i>real </i>men don’t go to the doctor’s lightly, and certainly not because
they’re feeling a bit floaty in the head!). <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
My GP was very kind. I felt
rather silly explaining my symptoms, particularly as they were so non-descript
and I was clearly able to walk unaided into the surgery. However, he gave me a
full examination, listened to me, and finally said (very honestly I
thought): “To be truthful, I just don’t know what this is.”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
He explained that the symptoms I
was describing could be caused by any number of conditions, but it sounded as
if it might be a condition called <i><a href="http://en.wikipedia.org/wiki/Labyrinthitis" target="_blank">labyrinthitis</a>,
</i>which is damage caused to the inner ear normally by some infection. He
prescribed me anti-vertigo medication and signed me off for the week, and off
home I went. Still no undue concern, and to be truthful I was quite pleased
with the prospect of a week off work, as my recent schedule had been punishing. When I
went home and researched <i>labyrinthitis</i>,
a bizarre condition causing balance problems and giving the world a dream-like,
unreal tint, I was convinced: that was exactly what I was experiencing. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
My week off extended to two
weeks, then a month, and then it turned into months. Rather than getting
better, things got worse. My balance deteriorated to the point that I could not
walk unaided – either by leaning upon something or (most demeaningly) holding
my wife’s hand or shoulder if we went out. There was a marked decline in my
memory and cognition – sometimes I couldn’t even remember what day it was. I
would lose track of my thoughts mid-sentence, and I would try and recall
something only to find (and it was very frightening) that the memory was just
gone, nothing, just an empty space inside my head. I couldn’t follow the plot
of films, conversations would exhaust me and confuse me, and I even stopped
being able to read. I didn’t lose the ability to understand the words, but
stringing them together into a coherent concept seemed simply beyond me. I also
developed more physical symptoms. My lips would start tingling, as would my
tongue and fingertips, and my left hand would at times stop working – I was
unable to accurately control the movement of my fingers. For someone that can
type and play the piano, for someone who had always had a good memory and
clear, fluid recall of words and concepts, these sensations and symptoms were
very disturbing, and I felt like a stranger in my own body. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Without a doubt, this was a
pretty miserable time for me and my wife. It seemed that with one single
stroke, everything I enjoyed doing was taken away. I couldn’t play the piano, I
couldn’t type, and I couldn’t even read a magazine article. The sports I
enjoyed were definitely out, and even the hum of the Xbox 360 (previously a
frequent sound in my house!) stopped. I spent a lot of this time on the couch -
distressed, frustrated and bored.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
During all of this, I was still
fairly convinced (and being treated as if) I had labyrinthitis. Moments of fear
did creep in, though. I had bad reactions to the medication I was on. It caused insomnia, vivid and terrifying nightmares, and panic attacks. During
this time, there was a growing sense that perhaps more was wrong than we knew. I
remember one night waking from a nightmare, in a panic because I was convinced
someone was in our garden, and jumping out of bed to confront this “intruder”.
As I did, I stumbled because of my balance and nearly fell. I was struck by how
pathetic this was. I slumped onto the bed, crying and sobbing. I’m a big guy –
6ft 6in and 19 stone – and here I was chasing phantoms in the night, and not
even able to stand properly to confront them. My wife was immediately at my
side with her arms around me. “What is wrong with me?” I kept saying, over and
over, sobbing and shaking. “We’re going back to the doctor’s tomorrow,” she
said with absolute resolution. “We’re going to find out what is wrong.” <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Thus began what felt like a long
and frustrating haul through the medical system. I changed GP and was sent for
an <a href="http://en.wikipedia.org/wiki/Otolaryngology" target="_blank">ENT</a> examination. I was given various tests and a <a href="http://en.wikipedia.org/wiki/X-ray_computed_tomography" target="_blank">CAT</a> scan, none of which
found anything conclusive. I was examined by a neurologist, who concluded (quite
definitely) that this was neither labyrinthitis nor a neurological problem. I
had been on a priority MRI scan list, but was then taken off. I was told I
would need to wait for the next MRI appointment (now a non-priority) and this
would take about nine months. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
At this point, my wife and I
decided to make a private appointment with an ENT surgeon (at this point, I was
still clinging to the idea that this was something to do with my ears). This
man was a game changer, a wonderful man. He gave me a full examination, spent
time listening to my symptoms, and then sat down with my wife and I. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
“This is not labyrinthitis,” he
said. “We need to get you an emergency MRI scan.”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I could sense he wasn’t saying
something, so I asked him what he thought it might be. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
“I would rather not discuss what
it may or may not be. There are some things we need to eliminate from the
investigation.”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
“I want to know,” I said. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
“OK. From your age and the
symptoms I’ve observed, I think that this might be the onset of Multiple
Sclerosis. This is what we need to eliminate.”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
“OK,” I said. “Thank you. I
appreciate that.”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Despite what was a calm
response, inside I was deeply frightened. This was the first time there had even been
mention of multiple sclerosis. <i>Multiple
Sclerosis?</i> I knew absolutely nothing about it, except that it was bad and made
me think of wheelchairs. The only person I knew of with MS was <a href="http://en.wikipedia.org/wiki/Debbie_Purdy" target="_blank">Debbie Purdy</a>,
the “right-to-die” campaigner. I had seen her on Sky News a matter of weeks
before, and I remember thinking flippantly: “God … can you imagine if it turned
out to be that?”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
As we left the surgeon’s offices,
he warned me with a wry smile not to go looking stuff up on the internet – as
if a warning like that ever works! I became an overnight “expert” in MS. My
reading was improving, so I was able to siphon small portions of articles from
the web and read them gradually. I still had no diagnosis, but I remember
thinking on many occasions: “Wow! MS! Give me <i>anything </i>but this disease.” I started to develop rather rosy feelings
of nostalgia toward the time when I had labyrinthitis … that word still has a
warm feeling for me … safe, dreamlike, otherworldly, but most of all <i>curable</i> labyrinthitis (I sigh wistfully!). <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The pace of things started to
really pick up from this point. The ENT surgeon got me back on the priority MRI
list, and I had this scan quite quickly. For some odd reason, I was referred
back to the public ENT (rather than neurology) to collect my scan results. I
remember a young doctor, poring over a radiographer’s report that he clearly
didn’t understand, mumbling that he didn’t know why I was here in ENT. I looked
over his shoulder and, in my newfound expertise, saw the words I was praying
would not be in the report: <i><a href="http://en.wikipedia.org/wiki/Demyelinating_disease" target="_blank">demyelinating plaques</a>.</i> I turned to my wife and said to her: “Yup. I’ve got MS.”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhY1Ah3sIwvA6MUDjtcHCr-1MfKksWllSep0brRIJCUtYvQsCG5dsC1ZgnOV1WINQACawVVEil7lxXcTJ9jxCQEyMAQPfluDu96W06dTm4-zY-NGGAtO-S1JLzj5-iOJ3sxhPB0Hq-F5c/s1600/253px-MRI.FLAIR.AXIAL.plaques_in_ms_(2).jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhY1Ah3sIwvA6MUDjtcHCr-1MfKksWllSep0brRIJCUtYvQsCG5dsC1ZgnOV1WINQACawVVEil7lxXcTJ9jxCQEyMAQPfluDu96W06dTm4-zY-NGGAtO-S1JLzj5-iOJ3sxhPB0Hq-F5c/s400/253px-MRI.FLAIR.AXIAL.plaques_in_ms_(2).jpg" width="315" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div style="text-align: center;">
This isn't my scan, but the white spots are the same demyelinating</div>
<div style="text-align: center;">
plaques that were discovered in mine. Having a neurologist point out</div>
<div style="text-align: center;">
and count areas of damage in your own brain is a definite "hit home" moment</div>
</td></tr>
</tbody></table>
<br />
Of course, the process of
diagnosing MS is not quite as simple as I was making out, and I was referred
back to neurology on the basis of this report. I was seen and examined <i>again</i> by the neurologist who had
previously stated this was not a neurological problem, but this time he
confirmed that the symptoms I was experiencing corresponded to the areas of
damage in my brain. Despite a gnawing grudge I felt toward him for earlier
clearing me, I have to say he was an exceptionally nice man. At one point,
while he was explaining the MRI report, my wife started crying, and he stood up
from his chair and gave her a hug. It was a bizarre situation that still makes
me smile now. Here I was, sitting in his office, having just been told (and
from an <i>actual </i>expert, rather than my
own self-appointed punditry) that yes, this all seems to be adding up toward
MS, and he and my wife were standing, embraced, and I was sitting on my own,
like Billy-no-Mates, thinking: “Hang on … why isn’t anyone talking to or hugging me?! <i><u>I’m</u></i> the one that’s just been told
this!”<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
More tests and examinations
followed. Balance test, eye tests, prick tests (that’s with a pin, for goodness
sake), plus the horrible ‘tickle test’. You know that one’s coming when the
doctor asks you to take your shoes and socks off. I <i>really</i> hate that one. One time, while I was in the examination room
with just the neurologist and a nurse, he tickled my feet with his keys (it’s
always keys for some reason) and I got an uncontrollable fit of the giggles.
Imagine it for a second: a 6ft 6in, 19 stone half-naked oaf lying on an
examination table, looking down the barrel of an MS diagnosis, and he’s giggling
like a baby, all because a doctor just ran a car key across the sole of his
foot. It would have been less embarrassing had the doctor or nurse at least
made some acknowledgement of my uncontrolled mirth, but no: they didn’t even
crack a smile as I continued to giggle, titter, snort and wipe the tears away
from my eyes.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
During these tests, I was kept in
hospital for the first time. I was also given a lumbar puncture – a rather
frightful test where they draw out spinal fluid with a needle for testing. It
was another humbling and rather pathetic moment. I had to lie on a bed, in the
foetal position, so that my vertebrae were accessible to the doctor and his
needle. I was frightened. My wife sat with me, holding my hand, and under
strict instructions by me not to wince, grimace or gasp when she either saw the
needle for the first time or saw them putting it into my back. It amazes me how, during these times, we need these childish comforts so much. A grown man, a
private investigator, used to working in a challenging environment, with ex-soldiers and police as colleagues, and here I
was, needing the comfort of having my hand held. I have to say, especially to
anyone that needs to have this routine performed, it wasn’t as bad as I was
expecting. It wasn’t pleasant by any means, but when is someone drawing cerebrospinal
fluid from your spine with a needle ever going to be pleasant? It hurt, but not
unbearably so. The pain was akin to the gnawing ache a man feels after he’s
caught a well-struck football with his testicles, but with that pain being relocated to the small of
your back. It was done, I got through it, and anyone out there who needs to
have this done will get through it as well.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The following morning, the head
neurologist came to see me with a nurse and two other doctors in tow. My wife
hadn’t yet arrived in, so he spoke to me on my own. I sat cross legged on my
bed and he sat on the edge of it. It was obvious he was in to tell me
something. He said, in a very quiet and kind voice, that the evidence from the
various tests was compelling (even though the results of the lumber puncture
weren’t in) and that he believed I was having the first attack of multiple
sclerosis. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Unlike with the ENT surgeon,
there was less restraint on my part this time, and less of the old British
stiff upper lip showed through. As he said it, I choked a single sob before
putting my fist to my mouth and catching myself. There was always a part of me
that didn’t believe it was MS, that it couldn’t be MS, and to hear the head
neurologist say ‘Look, we don’t even need the results of the final test’ was
quite shocking. He paused, I was able to compose myself, and then he explained
I would be kept in hospital over the coming days to have a course of steroids
administered to reduce inflammation in my brain. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Thus, from that point we arrive
at today, almost a year and half later. I’m still not working (I was
subsequently laid off for medical reasons by my employer), and my symptoms have
changed and evolved. By and large, I’m better than I was back then. My balance
is much better, although I still don’t feel completely right. However, fatigue
and pain has been very difficult to deal with. I take a betaferon injection every second day, as well as regular paracetamol and painkillers and some other
optional supplements. I had been on anti-depressants, largely to regulate my
sleep patterns which had become very erratic, but recently chose to come off
those. I also recently started physiotherapy, which I’m hopeful will reduce
both the pain and fatigue.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I still don’t know how much it
has sunk in yet – when I feel well, I still sometimes find myself doubting the
diagnosis. When I feel bad however, either very “MSey” (I will try and define
this in another post) or in a lot of pain, the weight of this diagnosis can be
very heavy indeed, and many factors such as loss of a feeling of control in my
life, loss of my identity and loss of my social life (to name a few) can weigh
very heavily upon me. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I am, however, generally positive
about my future and about the life changes that have been forced upon me. I try
and view this diagnosis as a new beginning. My career, for example, was very
special to me, and was part of my identity. I enjoyed the work, the excitement,
the mental challenges it gave me, and I liked the status, if you like, of being
a private investigator (and a good one, if I may toot my own horn). However, it
came at a cost. The work/life balance was hard to maintain, and it could be
physically and mentally exhausting, and it was a difficult line of work for a family
man, as I had become. So this can be a new beginning for me. I’m confident I
will work again, but in a new field that will give me new challenges and new
enjoyment. As it will need to something that is manageable for someone with MS,
I’m confident that it will also be something more manageable for someone with a
family. I have a few ideas, but my concentration right now is on improving my
health and getting back to as well as I can be. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I will write more specific
articles in the days and weeks to come (shorter ones, you might be glad to
know!), detailing my symptoms more in depth, my experience of adjusting to this
new me, and of course various articles and references that should be of
interest. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
If you got all the way through
this post, thank you for reading! I really do appreciate it, whatever your
interest in MS or my blog might be. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
My wife’s just brought me a cup
of tea and a muffin, so I believe it’s time for a little break. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Thank you again. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Eddie<o:p></o:p><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrGwadFsqB0OWapvcF7PeDt1EeurCpZ-R_99EsZlM1fIViHwMR0vycZVEUdvOaXzxycQT9vKHoY3N_A1W6TCDJ2SaBdM2m-tztTeP6S9vH4IOHdzwu-fj6RQnTc357x1xBcfXCGcWUuAs/s1600/IMAG0378.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrGwadFsqB0OWapvcF7PeDt1EeurCpZ-R_99EsZlM1fIViHwMR0vycZVEUdvOaXzxycQT9vKHoY3N_A1W6TCDJ2SaBdM2m-tztTeP6S9vH4IOHdzwu-fj6RQnTc357x1xBcfXCGcWUuAs/s640/IMAG0378.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Regardless of how the past year has been, or what the future holds,<br />
I know for a certainty that the next five minutes is going to be heavenly</td></tr>
</tbody></table>
<br /></div>
Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com3tag:blogger.com,1999:blog-4584834566821038498.post-84716439332843303862012-09-02T23:56:00.000+01:002012-11-25T03:00:34.001+00:00What is Multiple Sclerosis? <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQZi_7C6FdMsbYk7b8yRqmfDBYknjcOs5bRRbrblYpQ_7Kqv5o1QbWZ3aLYehkDa9Iq4pVgsN9vSjEz124_8QqCd5cH6A4X6oO0m16W7p60EfvrMtnCWBKYmBOcF7b7kEzsvsk36F9X0g/s1600/multiple-sclerosis-s4-illustration-of-nerve-fibers-and-myelin-attack-in-ms.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="434" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQZi_7C6FdMsbYk7b8yRqmfDBYknjcOs5bRRbrblYpQ_7Kqv5o1QbWZ3aLYehkDa9Iq4pVgsN9vSjEz124_8QqCd5cH6A4X6oO0m16W7p60EfvrMtnCWBKYmBOcF7b7kEzsvsk36F9X0g/s640/multiple-sclerosis-s4-illustration-of-nerve-fibers-and-myelin-attack-in-ms.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at the myelin sheath, getting all rubbish and damaged</td></tr>
</tbody></table>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
It wouldn’t be much of a blog
about MS if I didn’t explain what it is. After all, until the evening after a
consultant said to me “I think this might be MS,” I had no idea either. </div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
MS is a disease of the brain and
spinal cord (the central nervous system, or CNS). The CNS is responsible for
conducting electrical signals to the various parts of the body. The nerves in
the CNS are insulated by a fatty substance called the <i>myelin</i> <i>sheath</i>, often
likened to the flex on an electrical cord. In MS, this sheath is damaged, and
the nerves become less efficient at conducting the signals, or even fail to
conduct them at all, thus resulting in the various symptoms of MS. </div>
<div class="MsoNormal" style="text-align: justify;">
<br />
<h4>
Common symptoms include problems
with:</h4>
</div>
<div class="MsoNormal" style="text-align: justify;">
<br />
<ul>
<li><b>Bladder and bowel function</b></li>
<li><b>Muscles, spasms and stiffness</b></li>
<li><b>Mood, depression and emotions</b></li>
<li><b>Memory and cognition</b></li>
<li><b>Vision</b></li>
<li><b>Speech and swallowing</b></li>
<li><b>Sexual function</b></li>
<li><b>Pain and sensory disturbance</b></li>
<li><b>Fatigue</b></li>
<li><b>Tremors</b></li>
<li><b>Balance</b></li>
</ul>
</div>
<div class="MsoListParagraphCxSpLast" style="text-align: center; text-indent: -18pt;">
<div style="text-align: left;">
<span style="text-align: justify;"> MS is notoriously unpredictable
and symptoms vary considerably from person to person. Some symptoms are
immediately obvious to others (problems with speech or mobility, for example),
while other symptoms (such as pain and fatigue) are hidden symptoms that can
difficult for both observers to understand and for sufferers to explain.</span></div>
</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<h4>
What causes MS?</h4>
<span style="font-weight: normal;">This is one of medicine's biggest mysteries. Theories include: </span><br />
<div>
<ul>
<li><b>A virus,</b> whether an unknown one or a reaction to a common one.</li>
<li><b>An immune reaction,</b> in which the body's own immune system attacks and erodes the myelin sheath.</li>
<li><b>A combination of the above and/or other factors.</b></li>
</ul>
<div>
<b><br /></b></div>
<h4>
<span style="font-weight: normal;">Who will get MS?</span></h4>
</div>
<div>
<b><br /></b></div>
<div>
This is impossible to predict. However, some patterns have been observed.</div>
<div>
<br /></div>
<div>
<ul>
<li><b>Young adults.</b> Symptoms usually appear between the age of 20 and 40. Therefore, MS has the rather cruel reputation of striking people in their prime and most productive years.</li>
<li><b>Women </b>are twice as likely to develop MS as men.</li>
<li><b>Temperate zones.</b> MS occurrence is higher the further away you move from the equator. This bodes ill for Britain and Ireland. </li>
<li><b>Sanitation. </b>There is evidence that MS is more common in parts of the world with higher standards of sanitation.</li>
</ul>
<div>
<br /></div>
<h4>
<span style="font-weight: normal;">What is MS <u>not</u>?</span></h4>
</div>
<div>
<ul>
<li><b>MS is <u>not</u> a mental illness.</b></li>
<li><b>MS is <u>not</u> contagious.</b></li>
<li><b>MS is </b><b><u>not</u> curable or preventable (yet!)</b></li>
<li><b>MS is <u>not</u> ME, M&S or Eminem</b></li>
<li><b>MS is <u>not</u> a barrel of laughs</b></li>
</ul>
<h4>
<span style="font-weight: normal;">Why should you care?</span></h4>
</div>
<div>
What a callous question! Well, seeing as you asked ...</div>
<div>
<ul>
<li><b>Over 2,000,0000 people worldwide have MS, including some 400,000 in the US, 70,000 in Britain and 8,000 in the Republic of Ireland</b></li>
<li><b>Families of people with MS share the emotional, practical and financial burden of the disease</b></li>
<li><b>Every year, millions of euros are spend on research, treatment and support services related to MS. The total bill including lost productivity and social welfare costs is incalculable. </b></li>
<li><b>Due to the insidious and often invisible nature of MS symptoms, it is generally poorly understood by those who have had no direct experience of it. </b></li>
<li><b><u>It is one of the most common neurological diseases among young people in the world.</u></b></li>
</ul>
</div>
<div>
<span style="font-family: 'Times New Roman'; font-size: 7pt; text-indent: -18pt;"> </span></div>
</div>
<div align="center" class="MsoNormal" style="text-align: center;">
<div style="text-align: left;">
<span style="text-align: justify;">Although there is still no cure
for MS, treatment is advancing all the time and there are various treatment
options available, currently focused on managing symptoms, slowing the
progression of the diseases and maintaining quality of life.</span></div>
</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Hopefully, this has given you a
crash course into the basics of the disease. I will post links to great sites
with really good information (particularly the MS Society and MS Ireland) and
will post further articles on more specific subject soon. </div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.comtag:blogger.com,1999:blog-4584834566821038498.post-87160666149666479532012-07-29T13:12:00.001+01:002012-08-31T18:06:35.768+01:00Welcome to Multiple Stupidness<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDtcxV4d491p1KXpwLjFAv6T8oeTR4vSGD9WfE5xYPl1yh0N0C6pcZzrtozUDbGIViNx-TH1GGBvEBPGkYIlUrRzqWgg73g5UygfsvSiLQ2C9SbmCCjcI4nkzwYvo06meHhJA9ZTC93kE/s1600/welcome.gif" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="124" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDtcxV4d491p1KXpwLjFAv6T8oeTR4vSGD9WfE5xYPl1yh0N0C6pcZzrtozUDbGIViNx-TH1GGBvEBPGkYIlUrRzqWgg73g5UygfsvSiLQ2C9SbmCCjcI4nkzwYvo06meHhJA9ZTC93kE/s320/welcome.gif" width="320" /></a></div>
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This blog is for anyone whose life is affected by (grr!)
that horrible disease <i>Multiple Sclerosis. </i>That includes people that have
it, that love someone who has it, and those that just want to know a little
more about it. </div>
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It's also for me - I can't deny it! I became ill in April 2010
and was subsequently diagnosed with MS, and this is my chance to write about it
and what it's been like, something I feel I'll be able to do much better in
writing than I can in person. </div>
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<i>"Ed ... I'm so sorry to have heard! How have you
been?"</i></div>
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It's a common, kind and reasonable question, but my mind
goes blank whenever I'm confronted with it. How can I summarise (in a
reasonable time) what the past year or so has been like? I often can't express it
adequately in my own head, let alone verbalise it on the spot. </div>
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So, this will be my chance, for anyone that cares to read
it. I will also have the opportunity to share resources, articles of interest
and other information that may be of use to anyone affected by MS. </div>
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Oh ... the blog name, right? <i>Multiple Stupidness.</i></div>
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Just after I was diagnosed, my nephew came to visit, and we
decided to entertain ourselves by having a 'rap battle' - for those that have never seen the film <i>8 Mile, </i>it's basically taking it
in turns to insult each other through the medium of rap! I was ambling along
with the usual fare: rhyming about his acne, his braces, the fact that his
girlfriend left the country shortly after they started going out. </div>
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And this was his rhyme:</div>
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<b><span style="font-size: large;"><i>So Ed</i></span></b></div>
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<b><span style="font-size: large;"><i>I hear you've just
been diagnosed with MS</i></span></b></div>
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<b><span style="font-size: large;"><i>What does that
stand for </i></span></b></div>
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<b><span style="font-size: large;"><i>Multiple
Stupidness?</i></span></b></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxgARZI0Wze7FOpKQnj0HEhZK36Ld6i6JXXTn2fL4HV1KFce3EsdMJl3nlOJZgwFZe8v8CWVjTqRvqvAaLzIdD-8miAJloQzxoEzmjYgyqLZOuxJIZUVJtGiKzwFG_VhQYTiawqva6jso/s1600/PicsArt_1346415899002.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="301" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxgARZI0Wze7FOpKQnj0HEhZK36Ld6i6JXXTn2fL4HV1KFce3EsdMJl3nlOJZgwFZe8v8CWVjTqRvqvAaLzIdD-8miAJloQzxoEzmjYgyqLZOuxJIZUVJtGiKzwFG_VhQYTiawqva6jso/s320/PicsArt_1346415899002.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and my hard-rhyming git of a nephew</td></tr>
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I have to tell you now: this
moment was a shining light during a pretty miserable period of my life! The
truth is that there's nothing remotely funny about MS - it's a pitiful disease
that gatecrashes into your life and threatens to consume everything you know
and love. So MS itself isn't funny. But life is funny, and we create our own
humour in life. I laughed like I hadn't laughed in months when he recited that
rhyme. It was a brilliant lyric, but it was also a reminder to me: not to lose
the ability to laugh in the face of this trial, to attack MS for what it is (a
miserly, nasty and utterly stoooopid disease!) and to not let MS take away the things that I value most in life.</div>
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My name is Eddie, by the way. I
will write a proper 'My Story' section soon. In the meantime, welcome again to <i>Multiple
Stupidness</i>! Keep reading, keep fighting and keep smiling. </div>
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<span style="font-family: "Times New Roman"; font-size: 12pt;">Eddie</span><br />
<span style="font-family: "Times New Roman"; font-size: 12pt;">Email: <i>multiplestupidness@gmail.com</i></span>Eddie Fhttp://www.blogger.com/profile/08070797673911194671noreply@blogger.com5