Category Archives: Chronic Fatigue

Brain Fog

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It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Static

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Things have been a little crazed lately. There’s been a lot of health-related static taking over the scene offline, and on the heels of my last post on priorities, I’m trying to strike a balance.

I have stories to tell, but sometimes the stories that most need telling need the longest time to settle, so their many threads come together in a way that is cohesive, not chaotic; so the story is tempered and not reactionary. And sometimes the stories that matter the most are not always solely ours to tell.

While my posting has been light the past couple of weeks, I have tried to keep up with blog posts and headlines. No matter what else is going on and how many roles I find myself trying to manage, I will always be a reader.

So in lieu of the many posts swirling around that are not quite ready for editing, I offer instead a smattering of headlines that cut through the static this past week.

I’ve seen a number of stories on the new research that suggests a connection between chronic fatigue syndrome and a retrovirus, and I was pleased to see this news article, in which pain advocate and For Grace founder Cynthia Toussaint is interviewed. I’ve interviewed Cynthia several times regarding pain and gender, and find her story compelling.

I spent a lot of time the past month researching early AIDS activism and its relationship to other political and patient movements. I have a few students in different courses researching and writing about various aspects of HIV/AIDS right now, too, so it’s been an interesting time of intersection. As such, I was particularly interested in this NYT article, “Obama Lifts Ban on Entry Into U.S. by HIV-Positive People.”

According to the article, “The United States is one of only about a dozen countries that bar people who have H.I.V., the virus that causes AIDS.”

Now, I could write several posts on this topic (give me time) but I’ll start with the obvious: it’s about time that archaic guidelines based on fears and lack of knowledge/understanding of the disease were updated to reflect the realities of the HIV/AIDS and the respect that patients living with it deserve.

And moving from news and policy to the relationship realm, I spotted this submission in the Boston Globe’s Love Letters forum: “She Has Cancer and I Want Out.” A cursory glance at the headline might warrant immediate reactions, but read on: I agree with Meredith Goldstein that the larger issue here isn’t the cancer, it’s the letter-writer’s inability to be honest from the get-go.

And with that, another weekend is almost over, and another week of headlines is about to begin.

In Control…

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I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.

Not exactly the best feeling in the world.

I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.

And, as I may have mentioned before, I am somewhat of a control freak.

But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.

In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.

Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.

But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.

My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.

Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.

So in that sense, I’m pretty lucky.

Chronic Fatigue Syndrome—A Wake-Up Call

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I read “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’” in the New York Times with great interest.

Actually, it was more than just passing interest I felt. It was similar to when I read that Anheuser-Busch launched Redbridge, a gluten-free beer: relief. After all, if a mainstream beer company embraced the needs of the gluten-free consumer, didn’t that mean others would soon follow suit?

So when I read that the CDC released studies “that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes,” it buoyed me a bit. When I read that “some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood,” I was intrigued.

Decades have passed since chronic fatigue was dismissed as “yuppie flu”—decades marked by residual skepticism and dismissal nonetheless—and understanding the biological origins of the condition has always been paramount in allaying these dismissals.

I don’t write about it often, but my personal history with chronic fatigue began when I was in high school and a case of mono felled me. For nineteen months. Nineteen months of fatigue that overwhelmed me (at first, I slept twenty hours a day); of pain in my neck and joints so severe I cried; of fevers and infections and a brain haze so profound I found it hard sometimes to type my name.

Eventually, doctors gave this siege a name: chronic fatigue, and the flare that began my junior year in high school lasted for several years. I know how fortunate I was to have doctors who identified and diagnosed it so quickly; sadly, this is not often the case, even ten years later.

My condition improved somewhat after those first few months, but it definitely changed things. I didn’t have the same stamina; more than that, I didn’t have the same faith or reliance in my own body.

A decade later, its presence still insets itself in my life, though I’ve been lucky in that I haven’t again had a flare like the one that swallowed up four years of my life. When it happens, I don’t always know the source of the deep fatigue, the brain fog that comes over me sometimes that makes my sentences clumsy and my muscles burn and ache: Residual effects of steroids? Not getting enough air? Lingering complications from adrenal insufficiency? Or chronic fatigue?

I tell myself sourcing these moments isn’t important; dealing with them and moving forward with everything I need to do is what counts. And I believe that. But I remember how bad it was when it was really bad, when chronic fatigue was life halting, not merely life altering—and I know there are so many people still in that life-halted state.

Which is why the news in this updated article—particularly given the fractious history that exists with the CDC in relation to chronic fatigue—is so important. Some highlights? Research using strong antiviral medications shows promise, and it’s an avenue that opens up options beyond population-based studies, which some advocates and patients fault.

Click on over to the link above and read the rest—see how far things have come along, and how much work there is to be done.