MS Misrepresentations on TV

When you are diagnosed with a serious condition, it’s natural to spend days, weeks, months, and years researching every detail about symptoms, treatments, potential causes, cures, etc. In time, you become far more knowledgeable about the condition than your regular family doctor. That’s just the way it goes. Family doctors don’t have the time or resources to learn all there is to know about any one condition. So, that’s your job. And I can tell you that, particularly here in smaller cities and towns in Canada, even getting access to a specialist once a year is extremely difficult. You become an expert because you have to.

It’s interesting how knowing a lot more about your own condition can kinda ruin the entertainment of medical TV shows sometimes. For instance, when I was first diagnosed with MS, the TV show House was still airing. We had enjoyed it, though I knew it was not exactly accurate. But shortly after my diagnosis, I just couldn’t watch it anymore. It suddenly became sickeningly evident that the show itself was almost a smack in the face when it comes to actual medical treatment.

But I’m finding it goes even beyond just medical shows. Too many TV shows try to use MS as a “human interest story,” but fail miserably at raising any kind of genuine awareness. Continue reading

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Persistence in Ministry

Persistence-in-MinistryThis subject has been on my mind for a while, so I decided that it’s time to share a few thoughts. People live busy lives, and generally that’s a very good thing. But a natural result of this reality is that those in need who are not front and centre in our lives can be too easily forgotten.

I’m thinking in particular of people who are struggling with depression, pain, illness, disability, etc. They generally tend to be behind closed doors – out of sight – therefore also out of mind.

What’s worse: people who are enduring these kinds of struggles can be closed off and difficult to talk with. We might reach out to someone every now and then, only to have our plans canceled on us at the last minute. Then it becomes a lot easier to just carry on with our daily routine instead of trying again. We can be tempted to just say “Well, I tried,” shrug our shoulders, and leave it at that.  But reaching out with persistence requires a special willingness to be vulnerable over and over again. Continue reading

Denial & the Needed Shock of Reality

If you are new to my blog, let me first explain that I was diagnosed with Multiple Sclerosis in 2011. I have a wide range of symptoms that affect my quality of life, but are considered “mild” by medical standards for this condition. Theoretically, I have come to accept and work with the diagnosis. But functionally I still find myself often in denial. I’m still “beating myself up” about not being as functional and useful as healthy people or even some other sick people. Continue reading

Use your words – and hopefully we will endMS!

“In her book, Narrative Medicine: Honoring the Stories of Illness (2006), Charon says “It is sometimes as if the body speaks a foreign language, relying on bilingual others to translate, interpret, or in some way make transparent what it means to say”. For me, that absolutely hits the nail on the head! I have to be bilingual to translate my body to my medical team.”

This is a fantastic commentary on the difficulties of explaining symptoms to our specialists as MS patients.

mssingabout

I have a stomach ache. In August I started Aubagio and, a couple of weeks in, this stomach ache started. I went to my GP and of course I was asked to describe it.

Let’s put aside, for the moment, that one of my MS symptoms causes me to lose words. Let’s go this doctor’s visit on a “good” day.

“It’s this background noise most of the time, a grumbling, a tenderness, it’s something that’s enough to knock me off my stride. Then occasionally there’s these cramps. They’re sharp jabs. Knife stabs…. I’m still not sure I’ve described it correctly…”

“Okay… Perhaps we could start with you telling me where the pain is?!?”
And this is nothing compared to a trip to see my neurologist.

Let’s think of some of the descriptions that are commonly used during a neurological exam.

Tinglings. Pins and needles. Numbness. Ants walking on our skin.

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Lassitude & Laziness

Lassitude-and-lazinessLassitude and laziness can often be confused with one another, though they are quite different in nature. I think we’re all quite familiar with the nature of laziness! But what is lassitude? The Merriam-Webster Dictionary defines lassitude as:
1:  a condition of weariness or debility :  fatigue
2:  a condition of listlessness :  languor

For people with chronic fatigue, it can become very easy to confuse the two. Doing so can result in unfair blame and guilt. Or it can result in the use of chronic illness as an excuse for sin. On the one hand, lassitude means you are drained of all energy and unable to accomplish even the smallest task. On the other hand, there are times when even healthy people (and therefore, sick people as well) simply don’t feel like doing an undesirable task. All of us, whether healthy or ill have moments of laziness. It’s very much part of our fallen human nature. But when you already have lassitude (fatigue) it can become far too easy to use it as an excuse not to do certain tasks that you simply don’t like.

Continue reading

World MS Trend Day #CureMS #WMSTD

Today is World MS Trend Day. It’s a great campaign to raise awareness about MS. so please pass it on, especially if you are on Twitter.

I’ve been thinking about what it means to raise awareness about various chronic conditions, illnesses, etc. It’s not enough to just make people aware that these diseases exist. What we need to do is educate people about them and how they impact our lives.

I knew about MS from the time I was in my early teens. For a short period of time I had an uncle with it (my aunt married him for a few years before things got really bad). All I knew was that it made it hard for him to walk and he had to do things more slowly than healthy people do. Eventually, many years later, he ended up in full time care and passed away. I don’t even know if the MS was what caused his death. More recently, I also have an acquaintance who is in full time care with it. Those were my primary points of reference when I received my diagnosis. In hindsight, that’s not much to go on!

So, what can I tell you about MS? Well, here are some things that I wish I knew before and that I think would be helpful for the general population to be aware of: Continue reading

Diplopia

diplopiaDiplopia. Ever heard of this word before? Me neither – at least not until I ended up with it. It’s more commonly referred to as double vision. This is the latest of my MS relapses. It’s been a killer hot, dry summer here. And like most people with MS, I have heat intolerance (also called Uhthoff’s Phenomena – there’s another fun new name to learn!). What that means is that my body doesn’t regulate its own temperature properly. So when it gets hot, my system becomes overly stressed, causing nausea, weakness, “pseudo-exacerbation” (which is a fancy term that just means existing symptoms feel worse for a while), and sometimes even new relapses.

Suddenly, about seven weeks ago, we were on our way to church when I noticed that everything looked very strange. Every item in my view outside of the car was slightly out of focus, similar to viewing a 3-D graphic, but without the 3-D glasses. Continue reading