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invisible symptoms

NDIS logo

My first National Disability Insurance Scheme (NDIS) “package” was approved recently. For those who like the punch line up front, so far the experience of becoming an NDIS participant has been a good one for me.  I’m right at the beginning of using this new system, but since I agonized for many...

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Blank

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 something up. Let me open my phone, put the pin number in, open the browser and... what was I looking up again? ...

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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? 
 
Is it having cuts on...
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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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Steep stairs with wheelchair rails

I never had a broken bone as a child, but I wanted one.  The kids who had an arm in a cast for weeks on end got all sorts of benefits – from extra attention as everyone wrote on their plaster, to being allowed to go first in line, to not having to take part in physical education.  It never...

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Expectations

In my last post, I outlined five take-home messages to doctors that draw to your attention how to (and how not to) treat a patient when there is considerable uncertainty surrounding the diagnosis. In this second instalment of my...

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Dealing with Uncertainty

What I’d like to discuss in this post are a few things I wish all doctors out there were aware of. Not so much along the lines of scientific facts, but more in terms of how it feels to face a nebulous diagnosis like MS, or pre-MS (by this I mean the state generally referred to as being...

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My MS Victory

It's been a loooooooooong week, so I'm cheating and posting the entry I submitted to the #MyMSVictory competition.

My MS Victory is recognising:

  1. HOW to make it through the day...
  2. WHEN to call it a day...
  3. WHAT doesn't matter...
  4. and WHO does!
  5. ...
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Exhausted worker

In any blog about living with “invisible” MS, it’s inevitable that fatigue has to come up.  Like most aspects of MS, I suspect this one is different for each of us, but the unifying thing about fatigue is that most people with MS...

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The Unaffected One

I have been living with rrMS since 2002.  As someone who is mainly affected by the “invisible” symptoms of MS, such as fatigue, vision problems, intermittent vertigo, a subtle tremor and balance issues, I can generally choose who is aware of my diagnosis and who is not. I work...

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Living with MS: Five moments I knew I am sick

Living with MS is not pleasant. But one gets used to it. It becomes a little mundane, and quite frankly, I’m bored with it.

But a few moments have cut through the boredom and stunned me. Some I found funny, others not so much. Surprisingly, all have occurred when I have been relatively...

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