monk

 

You might have seen this image in the media over the past week. If not, let me briefly explain: this is a statue of Buddha that has the 1,000 year old mummified remains of a monk hidden inside. The owner bought the statue without any knowledge of its secret contents – this happened in the late 90s, and only recently was the statue run through a CT scan, along with other tests, to discover more about the remains.

But it was the photo that got my attention – even before I read the headline, and the story that followed. It was those yellow bones. On my handheld device, in the morning, as I was in bed, scrolling through my feeds, I actually thought they looked like nerve endings: hot, inflamed, almost certainly painful. I’ve been living with that for the past eight months, or so. Add to that muscle spasms and pain, and that was me.

Of course, it’s not me. It’s a mummy. It’s a statue. It’s both.

Which, in a way, is me and is the way I’ve been operating for the past little while. Yes, I can go out, put my face on for the world, don the armour, so to speak, when walking can be hard. When my mother was down and we went for walks, she outpaced me on the hills. That’s a bad day; on a good day, hey, things are okay. Bad days are when my senses are so out of control that, once, I ripped out an air freshener from its socket in the wall because the smell was so intolerable it was making me ill. Two hours earlier? Two minutes before that? Nothing.

Next to the feeling I’m constantly being punched in the arms, the worst part is the brain fog. The other day, I forgot the name of my GP. Totally forgot it. It came back to me, but it took a moment. My writing has been rubbish because searching for words that normally come so easily, and general rhythm and ability to frame a poem in my head before I write it, those things I take for granted have all been severely compromised. I’m fine working on other projects, but my creativity has had a stopper put in it, and it’s my job now to unblock it, while recovering.

In the two hours it took to get the diagnosis of Fibromyalgia this morning, my new specialist (although I felt like I knew him, I was a good Googler), drew a picture of my brain – a brain that other sufferers of Fibro, and CFS, will all look similar to in many respects.

 

brain

 

This is my system’s automatic nervous system on complete overdrive; my hypothalamus and pituitary gland are doing their jobs, but they’re being pushed to that point where, if this was a Star Trek movie, they’d be Scotty in the engine room screaming to the bridge in his accent, “I can’ do anymore, Cap’n!”

So, here I am three hours later, thinking, what next? And I think up clichés to myself (“everything changes… and nothing changes”), those kinds of conciliatory thoughts that are fine to keep in your head, but wouldn’t dare tell anyone else (well, okay, maybe Facebook). As of yesterday, I have a nicely fitted splint again so to avoid turning my teeth to paste of a night due to clenching, I have a recommended regime of ‘pain meds, sleep, balance, exercise and psych appointments’ to incorporate into my life, as needed… and that’s it. Will I have this forever? I don’t know. Some people do. Others recover. Will I go dairy-and-gluten free (again?). Some day I should; others will say it doesn’t matter.

But it does. Again, I’m looking at that statue. I don’t want to be all surface and pretence; but I don’t want to be trapped within either. Middle ground would be just fine by me. I’ll work towards that. If you’re willing to stick by and watch, learn, and maybe help, then by all means.

I’m not going to give in to this. There’ll be more to come, but for now… I just had to get this out.

x

karen-portrait

Karen Andrews is the creator of this website, one of the most established and well-respected parenting blogs in the country. She is also an author, award-winning writer, poet, editor and publisher at Miscellaneous Press. Her latest book is On The Many Shapes Bodies Will Take (March, 2017).

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