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Do you know any #spoonies, and do you understand them?

Posted May 02 2012 4:09am

The answer to the second part, based on experience, and on what others have said, is almost certainly no. But why should that be? It’s not hard to understand with just a little effort.

For example, there are days, more of them of late, when I feel too ill to talk to anybody, either face to face or on the telephone. A combination of pain, nausea, feeling faint, plain, old-fashioned exhaustion, brainfog, and a modicum of fear – and that’s a good day – obliterates any desire I might have to interact with anyone directly.

This is not uncommon among us spoonies , as a phone call, for example, makes far greater demands on our energy and concentration than, say, writing a blog post – which can take all day if it has to – or talking to people on twitter, or, perhaps, just tossing tweets out into the Twitterverse to make their own way, or even answering email.

The thing about all those activities, even though they mean interacting with other people, is that they can be dealt with in our own time, at our own pace, and they are small, finite, events – in ways that a conversation, or a phone call, is not and can never be. Aphasia, for those of us who suffer from it, doesn’t help either – today’s lost word, so far, anyway, is melatonin, I know that because I’ve just had to go and read the label for a tweet I was writing.

And the problem is that people who are not spoonies find this impossible to comprehend – or simply don’t care. Hard to tell…

So if you know people like this, who don’t phone you, or take your calls, we’re not avoiding you – well OK, we are, but it’s not personal – we’re just trying to cope with shit that the able-bodied can barely begin to imagine, in the best way we can.

So give us a break… OK?

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