FLATIGUE

6:31 a.m. Friday

I’ve been sitting on the balcony for an hour. Gray sky. Rain dripping noisily down the eaves pipes. The odd bird trilling or chattering. People starting to get off to work on foot, in cars.

As usual in the morning, I am particularly dizzy and unbalanced, my vision is double – but other than that I feel calm and lucid. Time for the steroids, I guess. Heather has been watching my med times lately and she is concerned about the ongoing cutback – one half milligram less every 10 days. In fairness, she had to witness the last time I tried – when I was unable to eat, throwing up and lurching about like someone made of spare parts. I tell her that everything I’ve read suggests you wean off them as soon as possible. “Even if you’re dying!?,” she bursts out. Well, yeah. If you’re dying, increasing them might be the only possibility. Funny, I know that I am dying – but it’s somehow gotten to be a notion that’s out there somewhere else. Her outburst reminds me.

I like this aspect of Heather. She and I tend to be blurters. I like that she can say something very bluntly and not be upset by it – or worry about upsetting me. There is a kind of stoic acceptance of what is simple fact in this house, on both our parts. A relief from denial and sadness – just is what it is.

I published a fairly grumpy entry last time. I was frustrated because I felt that, in trying not to get all histrionic about my “condition” – no one was hearing me. People, I know, want to think I'm fine. With the exception of Heather, Wendy and the medial professionals, you hear from me mostly on the blog. I know I sound “normal” and it fools people. When you read an entry, I have edited five times to pick out wrong words, mixed tenses, dropped words and other misspellings. Even then, I have probably missed something.

I have tremors now, in both hands. I can barely sign my name. The last couple of days, H and me have been painting lace earrings. I got up yesterday to do bead work around the edges of a pair I like and it took five times as long as usual. I had to steady the tremor and close my left eye to see the beads clearly. Still, I persevered. Five more crystals on the ends, to go. Life goes on, right? For now.

I apologize to the dear friends and family who want to get in touch. I am very calm – but when the phone rings, it sets something off. I sit and scream “F*ck OFF. Leave me alone!” Or something equally charming. This is because I have about two watts of energy to my name – and I’ll be down past that by the end of the call. They ought to have another name for radiation “fatigue.” Like, “flatigue” – or “total exhaustion”. What energy you have, you begin to guard like a dragon guarding jewels. This is very disconnecting, of course – and I’m working on trying to do better – I’m a regular at the rehabilitation center and I’m trying to get into the brain injury clinic. Oh yeah – and making earrings. Talk to you soon. Hopefully. Time for meds.