World Lupus Day 2011

Yes, it’s that time of year again. I had forgotten all about it and then Stephen Fry kindly tweeted a reminder. In timely fashion I am struggling to write very much about World Lupus Day because my lupus is flaring a little and stealing all my words. It does that.

You see, when I talk about fatigue I don’t just mean I feel tired; there’s a whole host of fun that comes with the tiredness. I suppose it’s not unlike a bad hangover combined with lack of sleep – there’s the headache, dizziness, nausea, dry mouth, double vision and, of course, the brain fog.

Brain fog? I remember the first time the rheumatologist said the words to me and I felt such huge relief. That bizarre cotton-woolly feeling of not being able to think straight, of losing words, of not being able to answer simple questions – it’s real! And I’m not the only one!

And this is why events like World Lupus Day are so important. Diagnosis is vital even in “mild cases” like mine and, of course it is life-saving in many other cases. But it’s also hugely helpful for other people to know about lupus and what it means for me and others. And a little more support for research into new treatments would also be a good thing.

To brighten up this post, here is a random old picture I took of a butterfly, because they’re the symbol of Lupus UK.

Papilio thoas

6 thoughts on “World Lupus Day 2011

  1. Leeswammes (Judith) May 10, 2011 at 6:57 pm

    When I heard it was World Lupus Day I was thinking of you, Kate.

    I’m still not quite sure what it entails, but it’s good that you found out that what you go through is normal, under the circumstances. May Lupus be mild to you!

  2. Uniflame May 10, 2011 at 8:01 pm

    I didn’t know that you have a chronic illness. I don’t have Lupus, I think… But CFS is combination with autism and ADHD, so I know what brain fog feels like… I hope it doesn’t bother you too much atm. I heard of Lupus before, but I am not really sure what it exactly is, but it must be hard to live with.

  3. Nose in a book May 10, 2011 at 8:07 pm

    Judith Thank you!

    Uniflame Three chronic illnesses? That’s rough. Lupus varies a lot between different people. For me, it’s just an irritation most days, now I’ve learned how to deal with it, though it can still get nasty. Hope you’re doing okay ATM too.

  4. lillput May 10, 2011 at 9:30 pm

    Keep well Kate and we’ll arrange lunch when you’re feeling up to it.

  5. Nose in a book May 12, 2011 at 5:14 pm

    lillput I’d like that. Will be in touch.

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