Update May 2018

This is a hard post to write.

It’s not really about writing. It’s not going to be about looking forward to projects or making ridiculously optimistic posting schedules.

This post is about the things lining up to make writing difficult for me at the moment. And what I’m trying to do to get past them.

Why? Because I need the record. I’ve discovered, since coming off medication for chronic pain, that I am not as good at remembering what it was like being in those mindsets as I thought. The hard things have softened in my memory, the triumphs lost their shining edge.

So, this post is about the current shenanigans my brain is throwing my way, and what it’s doing to, well, everything.

In July 2017, I had the immense privilege of being in a pain management program to come off medication for chronic pain and become self-managed. I was thrilled. I threw myself into the three-week course with enthusiasm.

But, as with most good things, there were unexpected results. The pain lessened, which is so amazing I cannot describe it, but I was incredibly dizzy and nauseous in that last week.

And then the week after. And the one after that. And onward for months.

There were many ideas about what it could be, but time ruled them out. It couldn’t have been coming off the meds, because it should have settled by now. We tried neurophysio for the vestibular system. It helped, but it clearly wasn’t that.

So, six months after the course I ended up at a neurologist who reassured me that it wasn’t a problem. It was just PPPD, Persistent postural-perceptual dizziness. Which basically means my brain did the thing where it was enthusiastic in the wrong direction, and ended up with a maladaptive response. And everything that involved looking or moving, or watching things move, resulted in a dizziness response. Everything.

I couldn’t read, not even a menu, without my stomach turning and my eyes blurring.

I couldn’t write, or dictate, or touch type.

I couldn’t drive.

I couldn’t do anything that meant moving my head. Which is a long and gloriously mundane list when you’re short…

Needless to say, that made me feel sick, tired, anxious, and starting to wonder what I had left once activities like, Life, were crossed off my list of things I could do.

Then I got in to see a wonderful CBT, who specialises in PPPD, and has got me trying to train my brain with graded exposure.

I can read, in 10min blocks. And since I discovered that I have no self-control, that means non-fiction books for me. Seriously, how are you supposed to read good fiction for just 10mins at a time! Madness!

I can write, in 10min blocks. But no more sets of 10/5/10/5/10/5… 10mins, then as much rest as I need to let my brain realise we didn’t have a near miss with disaster. At least, not a life-threatening disaster. Literary disaster is totally fine.

I can drive, and have to find places to go to increase my range. Yay new places to go!

And I have to keep track of how head movement impacts me, and what that means for the symptoms.

So, of course, I overdo everything, and end up in the middle of a well-deserved flair right as I’m starting to get to things again. Yay.

But, 10mins a day of words is still somewhere between 300-500 words. And I’m not going to sneeze at it. It’s more than I have been doing for the last five months. I’ll take it and be glad of it.

And write blog posts, and little things that don’t require keeping an entire fantasy novel in my head to do it.

But I do miss being able to do that. Or just make stuff up on the fly. It turns out when your brain is determined that it has to make all this dizziness for A-Good-Reason,-I-Promise, there isn’t a whole lot left over for the other things…

So, I'm napping then, apparently.

Leo and Abbey take their duty as rest helpers very seriously.

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Lyrica brain mush

I am coming off Lyrica. Slowly. Off a tiny, tiny bit. And my brain is so fried, I can’t promise this will make sense. But I have to write this. I have to remember that when I am like this, when my brain refuses to find words at all and I can’t remember to put on the sock in my hand, that I still am.

Isn’t that a funny thing? That I need to do this so I know I am? And not even right now, because right now I am moving my fingers over the keyboard in teh blind hope ‘muscle memory’ will do this for me. That it will take the thoughts and feelings and put them out in ways that make sense. Ways that I can’t say, because at the moment I don’t think I can make much of a coherent conversation. I have lost nouns. I called hairbrush ‘the thing with the pointy bits that makes the icky tangle things go away’. My partner gave me the hairbrush and I smiled up at him like an exhausted child home from a day at the zoo.

Or I might not have. My brain could have made that whole thing up. I don’t know. It could have made up that we went to the market this morning and I didn’t desperately crave donuts. It could have put a pretty little story in there, and I can’t tell the difference between that and anything else. Because my brain is trying to work out what to do without one less little pill of Lyrica.

I only had four. Four little white pills, two twice a day, and they were meant to make the pain stop. They were meant to make breathing okay. I think they did. But the put holws in my brain and I don’t know if I can fill them up again. I don’t know if I can stop the rest of my brain from falling into those holes, like those horrible sinkholes that appear and devour cars and roads and houses and suburbs. That last one might be a movie. I don’t know.

I am taking three little pills. Two, then one, and then the Endep for bed. And I think it’s going to make me better, coming off the little white pills. The doctors and psychologists and physios at the hospital who are so eager for me to do the pain course think so. They would know. They’ve got decades of research, and they’ve supervised the course numerous times. They would know. I think I forgot to tell them things. But what those things were are where the holes are, and I have no way of getting them back.

It’s July. The second. It’s Camp Nanowrimo. I love Camp. I wanted to write today. But I couldn’t remember the project, and I looked it up, and then I lost my pen, and something else happened. And I haven’t written words. Not ones on the story. I don’t remember the story. I know I put it up somewhere. It was a challenge. A push. I mean, not a big one. I was using for a purpose, this July Camp story. I used it to test something, but I don’t remember what. That’s in a hole too.

And at the bottom of my ribcage, the spots the doctors and physios called ‘trigger points’ tingle. Like the edges of the water when you drop in an Aspro-Clear. It starts off as nothing, just a little distortion on the surface. But you know more is coming. In that case, you want more to come because you can’t drink it until the whole lot is dissolved. But I will take the little blue Endep and the little yellow Endep, and they will stop it tingling.

They stop a lot of things, the little Endep pills. But the doctors aren’t worried about them yet. One drug at a time. One little white pill at a time. Check ins. And I will take notes. If I remember. I will take notes so I can give the doctors what they need. I don’t know what that is, but if I write things down, maybe it will help. Or maybe the things that help will be in those Lyrica pit-traps, so far into the blackness I can’t see them, so deep no rope will reach. Maybe that’s okay too.

Because I’m still here. Moments out of time, brief and sparkling clarity, starlight on the country-dark night sky. But here. That counts. You can learn a lot from that, right?

Mimic and Ash

Mimic was black and white. She changes coat every year. Funny pony.