I wrote a version of this, Aestas Horribilis, less than four months ago, but as dozens of you have totally ignored it I’m doing it again. For those with limited time, the tl;dr = Don’t ask me for anything right now. Unless I’ve already offered, the answer is no. If you truly believe what you’re asking/offering is special (for example I *am* going to go to the Los Angeles Times Festival of Books and Book Prize ceremony), then talk to my agent or publicist and she’ll decide if it’s worth passing on.

The last half of last year was terrible (see the link above), The first quarter of this one has, with two exceptions, been worse. On top of the parental situation mentioned previously—which is continuing to devolve, though, as we now have some systems in place, the physical exhaustion factor is not much worse (emotional toll? different story)—we have a whole host of other things to deal with.

We now have three family situations. One you already know about. One is not my news to discuss. One involves my family in the UK—which adds another layer of difficulty.

This is something I’ve been through three times before. Each time, my sister comes perilously close to dying before we can get her detained under the UK Mental Health Act and given ECT—with or without her permission. Emotionally it’s very hard. Physically, too, because it can involve flying to Leeds and bullying healthcare providers into doing the only thing that works.

All I can say is I am thankful twice a day that my other sister is right there and able to do this. I literally could not right now because of my own health. As you can imagine, this multiple family stress is not restful. And stress and lack of rest are very, very bad for inflammatory immune system issues—of which I have a Santa’s sackful.

Mostly I don’t talk about them because there’s no need. When most people look at me they see an energetic—sharp, happy, healthy, in-control of a zesty life—wheelchair user who loves doing new things, meeting new people, and getting out and about. And most of the time what you see is absolutely what you’re getting. But not right now. Stress does terrible things to the body.

As well as MS I have undifferentiated spondyloarthropathy, ocular rosacea, odd heart issues2, probable MCAS3, allergies, and a really bizarre set of reactions to medications that just don’t affect most other people. Most of the time, when life is stable, all this stuff is just background noise—not to be treated lightly, obviously, but nothing too terrible. Most of the time, I tend to forget everything but MS exists.

Most of the time but not now.

Right now my MS symptoms are the worst they’ve ever been. In addition, my spondyloarthropy is acting up, and MCAS is making me vomit and start to go into shock at the drop of a hat—or even a whiff of high-histamine food. I’m in massive, endless, grinding pain despite physical therapy, ultrasound massage, painkillers, and muscle relaxants. I look terrible (which always hurts my pride). I can’t focus, I can’t sleep, and I’m getting nothing done. My entire system is on a hair trigger. In the last seven days alone I’ve had to cancel without warning two separate events, which also hurts my pride—I hate to be seen as unreliable.

So, right now I don’t want to speak to your class, give you an interview, sign your books, be on your panel, ‘just take a look’ at your book’ or any other damn thing. Unless, as I’ve said, I’ve already told you I will.4

One good thing—beyond good, fabulous—Kelley got a brilliant new job. The hours are reasonable, the pay is fantastic, the health benefits good, and—best of all—she not only enjoys the work but her coworkers and managers (and the firm as a whole—a global, enterprise-level company) are wonderful.

A second good thing: MENEWOOD is still on track for October 3 publication and the publisher is solidly behind it. With luck, I’ll be fighting fit by mid-summer and ready to take the world by storm!

Meanwhile, watch for more news tomorrow about MENEWOOD…

1 The search for a bed has widened from Leeds, to Yorkshire, to the whole North, and now south and central England—and still nothing.

2 By odd I mean variable. Since I first passed out spectacularly in a club at age 20 I’ve been diagnosed with both ventricular and atrial issues, mitral valve prolapse, various electrical issues, plus stenosis and sclerosis of other valves—only for all those things to have vanished by the next echocardiogram and/or stress test. Whenever one of my providers retires the next one simply doesn’t believe my story until he (and it’s always been a he) sees for himself and is confused. I’m used to it. I also believe that my heart is essentially very healthy and just prone to…misbehaviour. My blood work always shows stellar results. As one neurologist once told me: You have a Harvard Chart. In other words, even as a wheelchair user my biomarkers are pretty much green down the line.

3 Getting a definite diagnosis can involve inconvenient, time-sensitive, and often painful invasive tests. So I’m fine with ‘probable’ for now. There are no decent treatments anyway.

4 And even then, honestly, it really depends on the vagaries of a seriously out-of-whack immune system. For example, I truly hope to be at Emerald City Comic Con at the weekend—but if I feel then how I feel today, well, I’m not sure.