Monday, 24 August 2015

Lupus Fatigue is Cumulative

Image: Dog hiding under a blanket.  Text: I know I could do it last week, but I can't do it again today, because I did something else yesterday.  That's how lupus fatigue works.I've had a hectic week.

There was nothing wrong.  In fact it was really good.  The British section of the family was visiting.

That meant a dinner out in Brisbane one night, a visit to a Gold Coast theme park, a trip to the little local zoo, an evening of playing a card game, Friday night jazz, and a trip to the airport, apart from normal life.

People with lupus will know what all that adds up to:  fatigue getting worse and worse throughout the week.

Some people can get tired after a busy day, have a good night's sleep, and then be back to normal the next morning.

For those of us with chronic illnesses like lupus,  a good night's sleep, even 12 hours or more, is not enough to recover from one tiring day.  So another tiring day on top of not fully recovering from the day before adds up.

A week with lots of "extra" things, no matter how wonderful those things are, can really add up.

Once I'm already fatigued, I can't just do things I normally could do.

So, for example, I had to drive to the Gold Coast for one of our outings.  It's about an hour and a half drive.  On a really good day I could do it, as long as I had a good rest before coming back.

On a day when I started out tired, I had to stop for a break part way.

I'm told that when I texted to tell everyone else I would be a little late because I needed a rest, someone said I was being "overly dramatic."  I must say I was very proud of my sister who heard this and managed to restrain herself from doing anything that could get her charged with assault.

Did it seem dramatic?  Maybe.  After all, on a really good day, I could probably drive that trip.

On the other hand, the place my son and I stopped was a very, very familiar rest stop.  I definitely go there most times I do the trip to the Gold Coast for any reason.  In fact, I can't actually remember going past that point without stopping.

At the end of the week, driving back from dropping my sister at the airport in Brisbane, I took advantage of the emergency stopping bays on the motorway for a brief recovery time. It's the first time I've really paid attention to them, but now I realise they're hardly ever more than half a kilometre apart.  At the end of a long, exhausting week, just knowing that somewhere I can stop and rest is never more than 500m away, is the most reassuring thing.

Yesterday, I slept. Today I woke with a massive lupus headache that just hasn't gone away.  It might take a few more days before I get back to "normal".  (My "normal" may not be the same as someone else's "normal".)

Some time this week, I'm going to try to gather enough energy to go for a massage.

All in all, it was a great week.  The week or so to recover might not be so great, but some things are just worth the cost.

1 comment:

  1. I'm sorry for the energy cost, but I'm glad that was worth of it ! Claire


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