Friday, 8 April 2016


Image: dog "playing dead" Text: With lupus, exhaustion is a way of life.When a lupie complains of fatigue, I wonder if healthy people understand what that means?

Unlike most people "tired" is a baseline for us.  We're always tired. We don't complain about that usually, because that's "normal".

We wake up tired - even if we've actually slept well - even if we've taken medication to ensure we've slept really well.

There's degrees of tired, however.  Most days I can make my zombie-like way to the kitchen to fuel up on caffeine so I can actually do something with my day.  Some days, I don't make it that far, I get half-way out of bed and go back for a nap.

Why is that?  Well some days, right from the start, "tired" feels like I've been dragging a load five times my own weight across a desert for the last 48 hours.

However I start the day - tired just gets worse from there.

For anyone who doesn't know, these are the basic stages of "tired" in lupus.

  1. Simply tired.  I can function, but I could do with a cup of coffee.
  2. Moderately tired.  That coffee is getting urgent.
  3. Very tired.  I'm struggling to stay awake.  Coffee's no longer helping much.
  4. Extremely tired: I'm binge eating, drinking anything I can find with caffeine, and shaking, trying to get the energy to keep going when every cell of my body just wants to sleep. 
  5. Fatigue: I'm not making sense when I talk, I keep forgetting basic things,  my co-ordination's shot and I'm dropping things and falling over.  I'm getting frustrated that my brain and body just aren't working any more.
  6. Severe fatigue:  Not only are my brain and body malfunctioning, but my emotions are all over the place. I'm just going to sit down here and throw a toddler tantrum until I get my milk and bikkies, and my blankie and nap.
  7. Exhaustion: I'm going to sleep.  I may be standing up.  I may be in a meeting.  I may be in a movie theatre. I may be standing in a line at the bank.  I may be shopping in the supermarket.  It doesn't matter.  I am going to just stop here and sleep.
I can remember (vaguely) days when I was healthy, that I really didn't even get to a 1 until late afternoon.  Now I can hit a 7 as I'm getting out of bed. An incredibly good day is one when I don't get past a 3.  On a regular day, I'm moving back and forwards over all points from about 3 to 6. 

Well, that's just fatigue.  When you add pain into the mix, that's when it gets really interesting.

Hey lovely lupies, have you thought about writing your story for me?  All through May, I want to feature posts about lupies sharing their story of life with lupus.  I just need your photo, your name, and your story.  

Full details are here: Tell Me Your Story (Note: if you have a lupus-related website or social media page, feel free to include the link with your story.)

I'm looking forward to hearing from you.

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