We arrived back in California on Thursday night. I had already planned to take Friday off to recuperate from the trip. Saturday, May 29th, I was feeling a bit tired, so I hung out on the couch with a book. It was Memorial Day weekend.
When the evening rolled around, I rummaged around in the kitchen, trying to find something to make for dinner. Since we’d been traveling, there wasn’t much in the house – although a friend once said that for a foodie like me, “nothing in the house” was everybody else’s “I just came from the grocery store.” I located some carrots, and I had a bag of split peas, so I decided on split pea soup, which I always used to cook with chipotle chilies and butter to replicate the smoky, fatty flavor that smoked ham would impart.
When I started chopping the carrots, I looked at the clock on the microwave. 5:45. I quartered the carrots and was working my way down their length when I was overcome with a bizarre sensation: All the energy in my body was draining out of me, from my head to my feet and from there into the floor. I dropped the knife onto the wooden cutting board with a clatter and grabbed the edge of the counter, suddenly too weak to stand. The weakness was absolute; it felt like I’d been hit by a wall of water and was being sucked away from shore.
I must be having a panic attack, I thought. I’d had them before, and there was no reason I should be having one at that minute, but I knew they could come with some really strange sensations. I think I’ll go sit down for a minute, I thought. It’ll pass. They always do.
I stumbled to the couch and called Chimp. He went out to the kitchen and finished putting the soup together while I waited to feel normal again. But something wasn’t right. Panic attacks don’t usually come with such a profound feeling of weakness. Nor do they usually feature tingling in the extremities. My arms and legs were deluged with a pins-and-needles sensation. And as the minutes ticked by, the “panic attack” wasn’t passing at all.
Sunday morning, I felt no better, and was considerably more distressed by whatever was going on. We went to the emergency room. Chimp parked the car while I walked up to the building. “You look really sick,” a man remarked to me as I struggled up the sidewalk to the door. I felt really sick.
In the ER, a doctor took my history. Because I was taking spironolactone, an anti-androgen drug (for acne) that is also a potassium-sparing diuretic, they checked me for hyperkalemia (excess potassium). My potassium level was fine, and the visit provided no real insight. The doctor who saw me thought I’d gotten a virus; he told me I’d feel better in a week or so. On my discharge slip, he wrote Consult your doctor if symptoms continue.
They did. The first week of June, I was unable to go to work. I had a constant fever. The tingling sensation remained in my hands and progressed up my legs over a few days, then slowly abated over another week. I thought maybe I had Guillain-Barré syndrome. I couldn’t stand without leaning on something. My sleep was unrefreshing – I felt worse when I woke up than when I went to bed. I was having labored breathing and felt like I couldn’t get enough air. My resting heart rate, normally below 60, shot up to between 80 and 100. I had a constant feeling of tightness running from the lymph nodes under my jaw down to my collarbone. Before the end of May, I’d been running 20 miles a week, and now I was totally unable to exercise – just looking at the treadmill told me to stay away from it. And my anxiety was much worse than usual – but that wouldn’t be hard to understand, would it?
Because I had never been sick, I had no regular doctor, only a gynecologist. I went to see her first. When my symptoms proved not to be related to her specialty, she had nothing to offer me. I made an appointment with an internist recommended by my boss’ s wife. At the appointment, she, too, was of no help. She suggested a prescription for an antidepressant. “But I’m not depressed,” I said. “how is that supposed to help?” She didn’t really respond.
By the end of June, my symptoms seemed to be stabilizing somewhat, and I was able to go back to work much of the time. By mid-July, I was making it through the workweek without taking time off. But weird things kept happening. I developed episodic vertigo, where the world would suddenly pitch and yaw crazily around me. I felt thirsty all the time for a while. And my weight, which had always been difficult for me to keep a handle on, had started dropping without me dieting or exercising.
I found myself a GP, and after some cursory blood tests, she started me making the rounds of specialists:
A sleep specialist who, at my appointment, spoke to Chimp about me as if I were not in the room, “Then, she will stay at the lab overnight…”
“What will I do?” I asked him pointedly. This seemed to set him back on track. The sleep study found nothing out of the ordinary – no apnea, no narcolepsy – although I had a far higher percentage of light sleep and a far lower percentage of deep sleep than normal, which I now know is characteristic of my illness, as is unrefreshing sleep.
A cardiologist, who did a routine EKG, on which I saw the flattened t-waves I had read were characteristic of ME/CFS. At my echocardiogram, he proclaimed I had a “beautiful heart.” He administered a treadmill test, which I passed with flying colors, but after which it took hours for my heart rate to come down out of the 120s, and after which I was flattened for days. (I had no idea what was going on at the time, but this post-exertional malaise, I was to learn, is the hallmark of ME/CFS.) I called his office; he had no insight into either of those things.
A brilliant and kind endocrinologist, the best of the doctors I saw early in my illness, who conjectured I might have subacute thyroiditis or Addison’s disease. He ran a battery of tests and, at my follow-up appointment, told me sadly that he could find “no endocrinological explanation” for my illness. He told me he thought I had gotten a really bad virus, something on the level of mononucleosis. In a move that none of us realized the foreshadowing nature of, he said he would like to send me to an infectious disease specialist. But the one he wanted me to see dealt exclusively with AIDS patients, he said, and he didn’t want to send me to either of the other two in town.
A rheumatologist with poor English skills who took a better history than most doctors did, but then offered me as next steps a chest x-ray and a battery of blood tests. When he pushed the list of tests across the desk to us, Chimp’s look to me spoke volumes. Chimp had had rheumatoid arthritis for twenty years already at that point, and he recognized the tests as arthritis markers.
Through all of this, I was a bit frightened, but at the start, there was never any doubt in my mind that whatever it was, we’d uncover the cause, treat it, and things would go back to normal. As the weeks ticked by, and turned into months, and I racked up negative result after negative result, I started reading about CFS (it was not referred to as ME/CFS in the States at this point). And as I did so, I realized this might go on for a while. I read that if I was to get better, I would do so by the five-year mark; after that, people generally had it for life. Early on in my reading about CFS, I also encountered Laura Hillenbrand’s essay, “A Sudden Illness.” While frightening, I comforted myself with the thought that my illness was not as severe as hers. I would have been more frightened if I’d known that one day it would be just as bad, if not worse than what she describes.
By December, my GP had done all the tests she could think of, including for levels of iron, folic acid, and B12, mononucleosis, Epstein-Barr virus, San Joaquin Valley fever, Lyme disease, and Rocky Mountain spotted fever. She didn’t think I had lupus, MS, or fibromyalgia. She sent me for an MRI; they found a brain in there, but no lesions.
She’d said months earlier that she didn’t want to give me the CFS label as long as there were things left to test for. At this point, there was nothing left to test; by exclusion, I had CFS. I was functioning okay, though – I missed exercising and cooking (the latter of which I’d mostly had to delegate to Chimp), and I’d lost about a dozen pounds, but I was managing to get through the workweek, though I did little but rest on the weekends. I didn’t love my changed life, but I was dealing with it.
A year in, I met with my GP again. She had told me the previous year that she had an aunt who’d wrested with CFS before returning to health after two years. At that one-year appointment, I said to her, “I don’t mind if it takes two years to get better, because…” and she completed my thought, “Because you’re halfway there!” Little did I know that I was going to be a lifer.
Unfortunately, the one really important thing nobody told me – because I didn’t have an ME/CFS-knowledgeable doctor, and I didn’t know how to find one back then, or that I needed one – was never to push it, energy-wise, if I wanted to have the best chance at getting better. But that is another story.
And it’s not what made me sick, but the association was just too much to bear: After that May day, it wasn’t until 2011 that I could bear to eat split pea soup again.