This fall, I acquired an Aranet4 CO2 monitor, with the intention to check ventilation at the dentist’s office, the one place I go where I can’t wear my PAPR. It’s been even more illuminating at home, however, and using it has helped me improve a little.
The documentation with it informed me that a reading in the 400s was typical for outdoor air, and that it was optimal that indoor air be below 1000. During the period of the autumn when we were able to have the house open, we did generally get readings in the 400s or 500s.
Six months in, I thought I’d give an update on how the pyridostigmine is going.
Taking an Increase
Hoping pyridostigmine would help me be out of bed more, Dr. Levine asked me to start it at 30 mg in the morning, and that’s where I was in the last post. When that went well, she suggested I try adding a second dose in the afternoon, starting at 15 mg and then increasing to 30 mg. I did so.
The increase coincided with my getting a dental splint to wear at night for bruxism, and at first I thought maybe wearing the splint was making my sleep less deep and that was why my arms were feeling increasingly weak in the afternoon and evening. I customarily write postcards to a bunch of junior pen pals, and I found that I couldn’t even pick up the pen to begin.
After a couple weeks, becoming skeptical of my splint hypothesis, I looked back and realized that the weakness coincided with the pyridostigmine increase. It was supposed to make my muscles feel stronger; could it be doing the opposite? I wandered the internet a bit, searching for experiences of others, and learned that too much of it could indeed do so. Could I be taking too much, even though people who take it for myasthenia gravis take ten times the amount?
Scene #1, 1999: I’m working behind a Whole Foods cheese counter in Northern Virginia. A friend walks up and says, “I knew you were here; I heard your laugh all the way over in the produce section.”
Scene #2, 2005: I’m sitting across from a colleague in Fresno. We’re discussing our first project together, which took place when my ME was as bad as it’d been to that point. He says, “When I met you, I didn’t realize you were sick. I just thought you were really shy.”
I think that was the first time my self-concept smacked up against the illness. I felt a surge of objection. I wasn’t shy! Nobody, before I was sick, would have ever confused me with shy. But it was a fair judgment based on what he’d seen. I drove home in turmoil – who was I – the person I thought of myself as, or the person I’d had to become because of my lack of energy?
I’ve been sick eighteen years today, and it’s taken that long to come to some peace on that.
Ten years in I wrote this, originally intending it for the blog, but never posted it; I decided it was more than I wanted to say in public then. I’m ready now:
On the inside, I feel like I’m still the person I was ten years ago. She never gets to come out to play, but she’s always there, occasionally poking at me, and if ME were cured tomorrow, I would go right back to that identity. This person I am instead is a concession, one made because I have no choice.
It probably seems silly that I’m still trying to hold on to that old persona. It probably is silly. But I feel like if I concede to the illness, and fully admit that this is the person I have to be – well, it’s a loss not even a decade of living this way has prepared me for. The illness has taken so much from me, but I feel like accepting this alternate identity is something I can’t do. I can’t let it have the last word on who I really am, even if I know on every level that the odds are I’ll never get to be the old Jocelyn again.
My sleep regimen includes some unusual homemade magnesium preparations, and I thought other people with myalgic encephalomyelitis might like to know how to make them.
Dr. Cheney was a big believer in magnesium – for energy production, for brain function, for sleep. He favored magnesium sulfate/taurine injections. He believed that absorption of magnesium from the GI tract was insufficient to benefit people with myalgic encephalomyelitis.
With a trial under his care, I found that injected and topical magnesium sulfate both caused tachycardia in me. As a substitute, he suggested I try other forms of magnesium, focusing on sublingual and topical approaches.
My regimen includes a commercially prepared magnesium threonate that I use sublingually, and three homemade magnesium preparations: a sublingual magnesium gluconate spray and magnesium gluconate and chloride “oils.”
I know the amount of magnesium I absorb sublingually and topically is probably slight, but I have found that it’s enough to help shift me back to sleep when nighttime awakenings occur.
This post is based on years of recordings/notes from my visits with Dr. Cheney and his public talks. I’ve done the best I can to present this clearly and simply, but as he’s no longer here for me to run this by, please know this is merely my understanding of these issues as a layperson. Any changes in your regimen should be made with the supervision of your health care provider(s). A language note: While I prefer ME, Dr. Cheney used CFS or CFIDS, and in order to be clear about how he presented information, I’m going to use that everywhere applicable here.
In 2017, Dr. Cheney revised his thinking about the use of oxygen in CFS and began recommending low-dose nocturnal use of it to his patients. If you’ve been around the ME community for a while, it’s likely you’ve at least heard of what he termed “oxygen toxicity.” I don’t believe any Cheney patient has written publicly about the shift, and I thought someone should. Going from “oxygen toxicity” to recommending oxygen sounds like a complete turnaround, but was really only a partial one.
There’s good news herein about a new med, but I’m going to do a little rationalizing first of why I’d never tried it.
People with ME will understand why I didn’t try to switch practitioners while Dr. Cheney was alive. We all know there’s no cure; we all know the absolute most we can hope for is maybe to improve some symptoms, some of the time, and a lot of the time not even that’s possible. For those of us fortunate enough to be able to access specialists, it’s a gigantic undertaking to switch, and when do we ever have the energy to spare for a gigantic undertaking?
A few weeks ago, a new doctor asked, “So has your weight always been pretty stable?” I stammered something out, but when Chimp and I were back at home, I said, “That question about my weight? We would have been there all day.”
I’ll attempt to be brief.
One million years ago, I wrote an entry about the unexplained weight loss when I fell ill, which landed me at 118. The least I’d ever weighed at my adult height, pre-illness, was 117, and that required an unhealthy degree of food restriction and running twenty-five miles a week. My casual exercise set point had been around 133-138, and serious exercise would keep me at 128, so 118 was a big change.
When the tiny-waist-big-booty combination gained broader (sorry) popularity in the years after I got sick, I felt rather bitter about it. I’d endured having it at a time when it felt like a liability and now I didn’t get to reap any of the vain rewards, like readily available curvy-cut pants.
Last summer, we learned from Chimp’s institution that he was going to be expected to teach in person during the fall semester, possibly-immunologically-vulnerable-spouse be damned. The good things about it, at least, were these:
He’s on the fourth floor of a building that has no elevator, only a particularly long and decidedly sadistic 19th-century staircase, so nobody goes up there unless they really completely absolutely must, and even some of the musts take a regular pass
It’s the oldest building on campus, with gigantic operable windows
He was scheduled to be on sabbatical this spring
…so all we had to do was get him safely through the fall and we’d be able to go back to our complete isolation for the next eight months.
We decided we would physically isolate from each other during the semester, which we knew would be lonely and very unfun, but even with mandatory vaccinations on campus, we had no idea what the case rate was going to look like once the students were back in person and didn’t want to chance it.
My dad died suddenly last summer, five days before my birthday.
I received a lot of kind expressions of sympathy, and to some people who remarked on the suddenness of his death, I said, “It’s okay; I’ve really been getting ready for it nearly my entire life.” It was long real to me in a way one’s father’s death isn’t for most people.
In 1978, when I was three years old, the day my mom learned she was pregnant with my brother, my father was diagnosed with stage 4B Hodgkin’s. They said they’d treat him, but they wouldn’t give him odds; the odds were too bad. He had two further occurrences and endured a total of twenty-one rounds of MOPP chemo before going into remission for good in 1982.
When I set the table back then, with the practicality of a child who has known nothing but a difficult situation, I gave him the brown placemat because he threw up a lot. When I got the (infrequent) chance to choose candy, I picked Good & Plenty so I could pretend I was taking pills, like Daddy.
When he was first diagnosed with Hodgkin’s, he had a hospital roommate, another young father with the same diagnosis, same stage, with three children. That man died within a few months. I have thought of those kids countless times over the course of my life, always aware that they were out there in the world having a very different experience than my brother and I were, and hoping they were okay.
My dad’s hair was completely silver by his early 40s. I don’t actually know it was the years of stress the cancer had caused but it’s always seemed plausible.
Sometime after his last bout, when I was still a child, I asked him if he would die someday.
I’m usually on edge Memorial Day weekend. That’s when I fell ill in 2004; ever since it has felt snakebit. Most years that’s just my anxiety. In 2021, the last moment that everything was relatively normal was the evening of Memorial Day.
I was supposed to have my semi-annual appointment with Dr. Cheney on June 2nd at 2:30.
I sent his assistant a message on May 31st about a medication shortage, and that person replied that Dr. Cheney was out of the office for the coming week. That was surprising, given my scheduled appointment, so I asked about that, and his assistant replied that the appointment would not be taking place and said we could reschedule the next week, when he was back.
A change like that was unlike Dr. Cheney, and it made me uneasy.