Tuesday, 7 January 2020


It's really surreal to read a description of your disease and symptoms - written by someone else.

In this case, my doctor has described my MS.

Even when you know what MS entails; the odds and stats. When you see it on a piece of paper right in front of your own eyes, you still have to wonder Is this really about me?

Yes, it is.

Permanently disabled.  Condition will deteriorate.  


That word is stuck in my head.  You mean it's going to get worse?  Yes, most likely.

And that means even more changes, more lifestyle adaptions, more assistance, more help.

And yes, the past few months have been much more difficult.  I've been having problems walking for two months.  My role as a "professional patient" has been expanded so much more because of that - trying to figure out whats going on.  Trying new medications.  Seeing different types of doctors.  This on top of my usual fatigue, imbalance, vertigo, and reduced ability to do more and more things.

Every day I drag myself somewhere, to some appointment.  In so much pain.  Just hoping it gets better.

And then I see that word again - deteriorating.

And I know it. It's been 10 years since my symptoms started.  It's the expected time to deteriorate.

But I'm not giving up. 

Yes, I have more pain now.  Yes, I can hardly stand still without losing my balance or wobbling over.  I need to sleep more than a toddler.  BUT -  I am starting some adaptive training this week, and am so excited.  Abs of steel, here I come (ha!).

And despite the new word stuck in my brain, I still have a word I focus on more.  The one word I couldn't live without.