Wednesday, 3 February 2010

What am I doing here??

Why did I decide to make a blog devoted to the M.E. side of my life when I already hang out on Facebook and LiveJournal?

Well, for some time I’ve been wanting to post more about the M.E. side of my life – how it affects me and others, what I’m learning about it, what the condition is and how attempts to find out are progressing. However, this isn’t a journey I want to force my friends to join. Hence this place, Wood of Thorns. Enter only if you wish.

Why is it called ‘Wood of Thorns’?

As you likely guessed from the picture, the title references the Sleeping Beauty tales – in particular the huge thorn hedge that grew up around the cursed castle. Not, I hasten to add because I have ever been called a ‘Beauty’ but because I feel my illness has put a wall between me and the world every bit as tangled and high as Briar Rose’s. Being struck with M.E. really does often feel like being ‘cursed' – one day I was enjoying a perfectly normal life, the next poof! it vanished, stolen as if by some wicked fairy.

Trying to manage and learn about the condition often feels very much like trying to hack my way through a tangled, thorny mess too. Especially with the blunt sword that is my brain these days.

And of course, I do sleep a lot.

What this place is

A probably-messy mixture of classroom, scrapbook and diary.

I’m trying hard to inform myself about my condition (after hiding my head in the sand failed to make it go away). Some of what I’m learning is making me sad, angry or scared and I find being able to share those things helps. As a non-scientist, I’m struggling with a lot of the things I try to read – my poor husband is getting used to anguished howls of ‘Cytokine? WTF is a cytokine?? How is anyone supposed to read this stuff?’ from my room. Here I can keep all my links and things in one place, and beg for help when my brain really won’t cope.

It’s also my way of keeping the time I spend reading and thinking about my condition within boundaries. It would be easy to fall into the trap of reading and thinking about little else and become the most boring, miserable person on earth.

What this place isn’t

It’s not a pity party. Though there will doubtless be some days when I do come on and howl.

It’s not me defining myself by my illness or feeling important because I have it. I don’t do ‘sick-chic’.

And, for the Wessely school, neither is it me indulging my bizarre ‘inappropriate illness beliefs’. Do, please, get a clue.

Why is it

Ask Oliver Murgatroyd, the helpful ginger cat who stamped on the keyboard as I selected a template.

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