Staring into space

Now in the 3rd month of my worst ME relapse for 7 years. Not the longest by any means, but definitely the most painful. Pretty sure it’s been triggered by my managed steroid reduction. My GP insists the reduction is essential and I trust him, but the severe pain never goes away and makes me so sick.

Out of bed for 3 or 4 hours a day, for a shower and to catch-up online mostly. Still too ill to write, but at least this week I’ve been able to read, which I couldn’t do for all of the previous month. Started JK Rowling’s The Silkworm this Thursday and managing about 4 short chapters a day. It’s good.

If this relapse lifts, I’ll get right back into writing my YA epic fantasy The Orphan Age. I miss writing my heroine Molly, whose ME is similar to mine.

If the relapse doesn’t lift, if this turns out to be my new level of health, which is entirely possible and has happened before, then I guess I will have retired from writing.

That would be a real kick in the gut. I’ve been writing ever since I got ill, and various publishers have released 7 of my books in that time. Even at my healthiest (Ha!) I’m a million miles too ill to self-publish. I don’t know what I’d do if I couldn’t write. The thought of it is like staring into space.

It’s a worry, but there’s no point in dwelling on something over which I have no power or influence. I’ll just carry on taking it one hour at a time.

“I wish I had all that free time to write like you do.”

Ah, yes. All that free time I have to write. Here’s what’s going on today in my free time.

My heart is pounding and aching. Makes me shaky trembly weak all over, and sick sweaty with slick skin-burning oil in it. I suspect my heart’s struggling because everything else is screaming in pain. Everything. Like a total physical meltdown. Even weirdly unassociated things like my right hip popping out and sudden agony in one eye like a hot needle plunged into it for five minutes then it’s gone like it was never there then it’s back again, and ankle edema that isn’t real edema because there’s no water retention but all the tissues are swollen as if infected and it feels like I’m trying to bear my weight on jagged broken glass and a stiff neck that tinkles sickeningly when I move it and a hammering back-of-brian headache along with all the normal muscle cramps and everything. And hundreds of other things all at once and not stopping for even a sixty-second breather. It’s mid-afternoon and I’ve fainted twice today, once from a big thigh muscle cramp that wouldn’t stop and once from dizzy sickening blood pressure dropping exhaustion. First time I fitted a bit and bruised my shoulder. Second time I just slid quietly from my chair to the carpeted floor, so that’s okay, except for the sickness and blinding new front-of-brain headache when I came round.

It’s been like this for 23 years. Variations on a theme. Details change, but everything blends together eventually. I’m coping with it today, but some days are really bad.

All that free time to write. Yeah, I see what you mean.

Ferguson, Missouri 2014

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Friedrich Gustav Emil Martin Niemöller 1892 – 1984

Is that a light I see at the end of this tunnel?

I was too ill to post last week. On Tuesday, a week ago today, I honestly thought I was dying. And I was so ill, I wasn’t uncomfortable with the idea.

Well, I didn’t die. Obviously. In fact I’m starting to hope that this is one of those occasions where the darkest hour is just before dawn, because today I’m feeling less fluey and poisoned than I’ve felt on any other day for the past few months.

And that’s after going out to see Guardians of The Galaxy yesterday afternoon, which is the first time I’ve been out of the house for something other than a medical appointment, and for more than an hour at a time, in a year or more!

The film was ace. Pure entertaining fun. I enjoyed it hugely and recommend it.

Today, I hurt. I expected to, after walking farther than I have in many months, from the car to my seat then back again afterwards. I judged it worth the pain. Tomorrow is likely to hurt even more, when the classic ME 48-hour delay kicks in. That’ll be worth it too.

Most excitingly, I have The Orphan Age open on my Mac and I’m going to hit it this afternoon. Aiming to do 1k words today, for the first time since this relapse started somewhere back in the middle of June.

I’m not calling it a remission yet. That would be stupid. But there’s the glimmer of a light ahead and I’m focusing on it while I trudge on along this tunnel.

Happy David. :)

Happy Birthday, JK Rowling!

Happy Birthday, Jo!

You’re not only my favourite storyteller. You’re also a wonderful person. Your philanthropy and heart for social justice inspire me.

I’m an author, and sometimes struggle to enjoy a read all the way when I can’t help picking up on craft stuff, etc. But that doesn’t happen with your books. You’re so bloody brilliant, and the world you’ve created for Harry Potter is so fabulously deep. I read the series again this summer while laid up with a difficult chronic illness relapse, and it still transports me.

Thank you. I hope you have a lovely birthday.