Friday, 24 August 2012

Lupus Awareness

 Here's some of the elements of lupus that healthy people probably don't really understand.....

"Brain Fog" that people with lupus and similar conditions talk about is very real, and very frustrating. I know lots of people have experienced things like going to the supermarket for one item, and coming out with a trolley-load of things, but not the one item they went for. But imagine doing things like that so often that you start to wonder if you have early stage alzheimer's when you're only in your 30s or 40s.

 Most of us know someone who knows someone whose lupus was "cured".  There's actually no known cure for lupus - and trust me, this is a topic very close to lupies' hearts.  If there was a legitimate cure out there, we'd find out about it.

So the person who "cured" their lupus by reducing stress, giving up coffee, standing on their head for six hours, eating only onions for a week, whatever, wasn't cured of lupus. What's more likely is that either this person was mis-diagnosed in the first place, or they have gone into remission.

Lupus does at times go into remission, either because of treatment, or just randomly for no known reason. That doesn't mean it's gone. It's just dormant. If it really was lupus, it will flare again.

Everyone gets tired when they overdo things.  Lupies overdo things by doing far less than it takes for a healthy person to overdo things. And our fatigue isn't just getting tired.  It's like hitting a brick wall. There's no getting your "second wind", or just pushing through. It's total exhaustion. Imagine you had run a marathon, without any training or preparation. The way you'd feel at the end of the run is how a lupie feels when fatigue hits.

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