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living with MS

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Let's be blunt, it's just the worst.
 
Why did I come into this room? What was I saying again? I'm sorry, have I told you this before? What were we talking about?
 
Ok, I need to look...
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Woman watching sunrise in sunflower field

Today is a good day.

 

Today I'm turning off the television and putting on music.

First I'm going to tidy up the mess on the floor, and conquer the vacuum cleaner. It doesn't expect me. It roars to life, but I...

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Girl Alone
I am the elephant in the room.
 
Not because you don't love me. Because you love me so much, you don't want it to be real. And maybe if we ignore it, if we don't mention it, if we sweep it under the rug, it doesn't exist....
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Sleepy Koala
I've been thinking for days on how to answer this question. What IS my worst symptom? And I tried to remember all of my symptoms and tried to categorise them from least-awful to plain-awful, and found myself really struggling. What's the worst one? 
 ...
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When I was initially diagnosed with MS, I read a lot of stories online that suggested my life would now virtually be over. My neurologist had told me “whatever you do, don’t go home and sift through Google results about MS”. Although I understood that this was certainly great advice...

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One thing about having a chronic, debilitating and diagnosed ‘incurable’ illness is having to find ways to tell the same story to people over and over.

You get asked what’s up, or down, and it’s hard to know what to say on the hop.

  • Do I tell him the truth?
  • ...
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Well It’s been a good while since I wrote anything for Uninterrupted, actually April was my last blog. Lots of reasons, lots of water under the bridge but we are all back and looking forward to blogging again, which we love.

A lot has happened in my little world since April, long story...

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how

Have you ever met someone and thought, I don’t know how they do it? Their story of what they have achieved with their life, or what they manage to fit within their day astounds you. How do they manage to get all that done and still remain so positive and focused? Or possibly its been...

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Imagine if people with MS communicated all their frustrations in haikus…

Fatigue
House needs a tidy.
Not gonna happen. Craving
downtime. Urgently.

Unpredictability
Yesterday all good
Today I am...

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Beach

My son was four months old when my first obvious MS symptoms presented themselves to me for the first time. By the time I reached my diagnosis he was eighteen months old. The decision to have more children was not an easy decision though it was a decision that came quickly. Not wanting to play...

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Juggling Juveniles and Jobs

Late last year, I posted about so-called occupational hazards, issues that crop up for many MS diagnosees who undertake paid (or unpaid) employment. Thank you to all who responded: it has been very illuminating to read...

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The plaintiff, Sarah, on behalf of herself and those similarly situated, alleges and complains as follows:

  1. Defendant MS has failed to provide a clear definition of itself as a valid entity.  It fails to make available clear biomarkers for diagnostic purposes and persists as a medical...
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Bruegel's Icarus

There’s an often remarked truth that “life goes on”. Typically uttered by way of an inept attempt to cheer you up when things are not going well, it’s a truth that I think bears closer inspection.  It has been beautifully explored by WH Auden, in his poem “Musee des Beax Arts”.  I read this...

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Ignas Semmelweis

I remember seeing a primary school classmate cry when she got her first pair of much needed glasses.  I didn’t understand why she was so upset - I’d worn glasses for years and knew they weren’t that big a deal. She turned to me, tears streaming down her face, and sobbed “The trees have...

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NYE

For our family, we are ending this year in a much more settled state than how we started it. That being said, in the aftermath of Christmas, it feels like we are not so much coasting as stumbling towards the finishline of 2015. Rather than attempting to craft something overly intellectual, I...

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Christmas

Christmas can be a crazy time of year, even for those who don't live with a illness like Multiple Sclerosis. After many attempts to write this blog post, I leave you with this.

MS Christmas Carol

This the season to be joyful,

Fa la la la la, la...

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LadywithMS

Two years ago I could not have foreseen what MS would bring to my life. And no, I am not deluding myself with mindless positivity. I despise MS, although I have grown used to it. My surprise stems from the fact that I am a much happier person now than I was before my diagnosis....

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Taj mahal

I’ve always had a bucket list.  I add things all the time and I change my mind about which items are the most important to see with my own eyes. I have crossed a few things off – and every single one has been worth the effort, no matter how different it was from how I imagined it.  There is so...

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Cake

Today is the 6th year anniversary of my diagnosis with Multiple Sclerosis. I do not celebrate, (ok I may use it as an excuse to eat cake!) or commiserate, though I do acknowledge this day each year. I like to take a moment and look back over the past 12 months and see what I have...

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If you’ve read some of my earlier posts, you have probably figured out by now I like puns and playing around with words. If not, see here, here and...

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Sign post

I’m pretty sure there is a hard drive at a small medical centre in the western suburbs of Brisbane that is nearly full to capacity with my medical history from 2014. You might think this is because I was quite ill, but in actual fact, it was more due to the fact I was Clearly Not Fine...

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