No Poster Girl

Edit: Laura Hillenbrand tells me via Facebook that she’s never stopped speaking out about the illness. I have clearly missed those interviews, so I’ve corrected this entry.

Laura Hillenbrand – author of Seabiscuit and, most recently, Unbroken – is interviewed in Tara Parker-Pope’s “Well” blog at the NYT. The title – “An Author Escapes from Chronic Fatigue Syndrome” – is unfortunate and sort of misleading, but the interview is a good one. (Also: Don’t read the comments. The IT HAS TO BE LYME DISEASE! people are out in force. When all you have is a hammer…)

Ms. Hillenbrand has spoken publicly about ME/CFS before: Her award-winning essay “A Sudden Illness” appeared in the New Yorker in 2002.

I came upon that essay – which, by the way, took her six months to write – not long after I fell ill, and I’ve recommended it countless times. It is the best summation I’ve come across of so many aspects of the illness. I was struck, when I first read it, by how precisely alike our experience of the onset was. I, too, thought I had food poisoning. I also found it comforting, then, that my illness was not as severe as hers. And of course, in the intervening years, it has become so.

She does a beautiful job of conveying in “A Sudden Illness” what it was like in the years before the discovery of XMRV in late 2009. She lived many more of those than I did. It was a recipe for despair, to try to look for a cause or a reason. There was so much bad and conflicting information out there, and it was impossible to know what to believe.

I have had so many of the symptoms and experiences she describes therein – the weight loss, the mental confusion, the constant fever, the overwhelming vertigo, and the more frightening ones, too. I’ve had some dismissive doctors as well, but thankfully, by the time I fell ill, the illness had a name, if a trivializing one. Unfortunately, as she describes, after only a short time,  I, too, knew more about it than my doctors.

Ms. Hillenbrand is certainly the best-known person we have with ME/CFS. I certainly understand not wanting to make her career about the illness – my blog title is No Poster Girl, after all – but the fame her talent and hard work has brought her means she has the power to make people take notice of it in a way few of us with it do.

Laura Hillenbrand and I have one other thing in common, but it’s a lucky trait, not an unlucky one: We are both married to philosophers! Her husband, G. Borden Flanangan, teaches at American University.

Anyhow, I’ve kept you long enough. Go read that essay!

Well, I suppose that’s the right way to start off an ME/CFS blog, isn’t it, with a big flaming crash?

This crash has the same cause as every one I’ve had since the end of 2007: Not sleeping.

After the night with the Zeo, my sleep cocktail failed. We had been increasing the Seroquel, which I was tolerating increasingly poorly. I’d always had to take beta blockers with it, because it increased my heart rate, but it was doing so more, I was needing more of it and it was doing less to help me sleep.

So there were three days of six hours a night, then three nights – I think – of no sleep at all. My memory’s not so good in there – when I don’t sleep, I don’t consolidate information, I forget when I usually do things that happen every day, like eat.

Anyway, at some point we connected with Dr. Cheney, (Chimp had to fill me in on the details here; I have no memory of this) and he said to move 40 mg. Baclofen, which I’d been using mostly as a backup, to the front of the night. So we did that, dropped the Seroquel out of the cocktail, and the weirdest thing happened: About two hours after I took the revamped cocktail, I was blindingly awake. Like I-just-shotgunned-a-gallon-of-coffee alert. I ring the bell by my bed, Chimp comes down, I’m telling him what’s up, and he says, “Why not take just a little of the Seroquel?” And I’m saying, no, no, I want to wait this out a little, but he convinces me. So I put it in my mouth, and almost instantly I feel this throbbing shift in my brain toward sleepiness. And it works.

I asked him the next day where he got the idea that a little Seroquel would help, and he said, “Honestly? The episode of M*A*S*H* where people get hemorrhagic fever. They’re under orders not to give them sodium, and they figure out to give them only a tiny amount.” So thanks, WTTG, for those endless reruns.

Reducing the Seroquel seems to have resulted in some stomach upset and some night sweats, which the internet tells me will pass. The crash itself has resulted in a fair bit of pain. I think today’s the first day since it began that I haven’t taken any pain pills during the day. That that’s passing is a good sign, and I seem to be recovering from it pretty steadily, though my brain definitely still feels a bit more leaden – less clever, less well-organized – than usual.

But to have a ME/CFS crash is not just painful; it’s a bad idea. Crashes are not a neutral occurrence; they make you worse temporarily at least, but sometimes there’s permanent function loss. too. My major crashes have happened in May 2004 (the dramatic onset of my illness), July 2006 (a heat wave and a power outage coincided to end my ability to commute to the office), December 2007 (when several months of insomnia resulted in my bedriddeness), and December 2008 (when more insomnia came pretty close to taking my life).

You can see why I don’t want to have any more of these.

My last few, as I said, have been caused by lack of sleep, but they can be caused by almost anything that pushes you beyond your limited capacity to deal – a minor illness, physical exertion, or physical or emotional stress of almost any kind.

The crash I had in July 2006, the one that ended my ability to commute to the office, was caused by a massive heat wave. The power went out, our apartment overheated, we had to get the cats out and to a hotel, and by the time I got to the lobby to check in, I was gasping for air and clinging to the desk so as not to collapse. We had tickets for CSNY the next night – I unwisely decided to go to the show. We left halfway through, and we had to get someone to get a wheelchair to take me from my seat to the door.

That’s a perfect example what you’re not supposed to do – I made that crash worse than it needed to be. Overdoing it physically has a particular name: it’s called a push-crash cycle – and you’re supposed to avoid the push so as not to have a crash.

Over time, what is a “push” for me has gotten smaller and smaller, though I’ve gotten better at respecting my boundaries, even as they’ve become more and more constraining. Some people are unlucky this way and get what seems like a progressive version of the disease. But I do seem to be coming back from this crash pretty steadily, I have an effective sleep cocktail again, and I hope it will work until I’m miraculously healed.