Monday, 19 August 2019


When lupies talk about fatigue and exhaustion, healthy people tend to say something like, "I get tired, too."

Let me tell you what fatigue for a lupie is like.

I'm in the process of painting our front room.  It's a long, slow job, because I can only use a paint roller for about five to ten minutes before I become exhausted and have to stop.

What does exhausted feel like?

Stage one: Everything starts to hurt, I'm unbelievably tired, and anyone looking at me will notice the redness appearing across my nose and cheeks (the infamous lupus butterfly rash.)

Stage two: I'm weak all over. My arms are so heavy I can hardly hold them up. My legs and gut feel like wobbly jelly.

At stage two, I have to sit down and have a cool drink.  After about ten minutes' rest, I am able to clean up, then go and sit in the shower for a while.

Now, I know some people will say, things like, "Just push through it, you'll get your second wind."

I used to think that.  Then I tried "just pushing through it" while doing a couple of other basic household  tasks. I've tried it a couple of times because, clearly, I'm a slow learner.  

Guess what happens next after the jelly wobbles?

Stage three is pretty gross.  It comes on quickly (only a minute or two) after stage two. It is simultaneous vomiting, and loss of bowel and bladder control. That's right.  All at once.  At the same times, my legs tend to buckle underneath me, and I find myself sitting on the ground totally incapable of helping myself.

I don't push myself past stage two any more.