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.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s