Category Archives: ME/CFS

Pyridostigmine, Part Two

Posted on August 31, 2022 by Jocelyn

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 … Continue reading →

Posted in ME/CFS | Tagged , | 7 Comments

Age of MEjority

Posted on May 29, 2022 by Jocelyn

“If I could leave the kingdom of the sick, I would never be able to forget what it was to be a subject, would always be conscious of, seeing for, those still there.” Continue reading →

Posted in ME/CFS | 8 Comments

Homemade Sublingual Magnesium Spray and Topical Magnesium Oil

Posted on April 28, 2022 by Jocelyn

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, … Continue reading →

Posted in ME/CFS | Tagged , , , , , , | 4 Comments

Dr. Cheney’s Change of Heart: Low-Dose Nocturnal Oxygen in Myalgic Encephalomyelitis

Posted on April 14, 2022 by Jocelyn

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 … Continue reading →

Posted in ME/CFS | Tagged , , , | 4 Comments

The Power of Pyridostigmine

Posted on April 7, 2022 by Jocelyn

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. … Continue reading →

Posted in ME/CFS | 11 Comments

A Problem I Didn’t Want Back

Posted on March 31, 2022 by Jocelyn

CW: Diet culture BS, weight loss/gain, dieting talk.  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 … Continue reading →

Posted in ME/CFS | 5 Comments

Vax Attack

Posted on March 25, 2022 by Jocelyn

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 … Continue reading →

Posted in Chimp, ME/CFS | 1 Comment

Cruel (Cruel) Summer

Posted on March 13, 2022 by Jocelyn

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 … Continue reading →

Posted in ME/CFS | 2 Comments

Black Dress Day 2014

Posted on August 8, 2014 by Jocelyn

How to accomplish a Black Dress* Day photo for severe ME if you have severe ME yourself and are 98% bedridden (may not be possible for all such folks): Use a morning’s energy to try on three dresses. Pick one … Continue reading →

Posted in ME/CFS | Tagged , , , , , , , , | 28 Comments

The Body and My Body

Posted on July 21, 2014 by Jocelyn

If asked to guess what holiday is hardest for me, I don’t think Independence Day would top most people’s lists – but it is. Maybe when I say that, though, it comes into focus – really, you couldn’t design a … Continue reading →

Posted in Life Before, ME/CFS | Tagged , , , , , , , , , , , , | 15 Comments