I could and did fall asleep pretty much anywhere, any time. I was lucky to be able to keep my job, though there was a period where my boss wondered if I needed to go on leave or work part time. I couldn’t afford to lose my health insurance or much income, so I dedicated myself to sticking it out at the office for a full day, four days a week (I already worked at home one day) even though sometimes I fell asleep in my chair or had to crawl under my desk for half an hour because sitting up made me so tired I hurt all over. When I got home, I’d flop into the Big Poofy Chair and, more often than not, fall asleep for two hours. I’d recover enough to watch TV until it was time to go to sleep for another nine and a half or ten hours. Sometimes on my way to work I’d have to pull over in
Not having a diagnosis made it all much worse. I saw four doctors at Kaiser and one outside doc; but as I became more and more convinced that it was one of the many flavors of Chronic Fatigue Syndrome/Chronic Fatigue-Immune Deficiency Syndrome/Myalgic Encephalomyelitis, it became clear to me that having a diagnosis wasn’t going to help me in any way except to help me validate my horrid experience.
Now there’s a new study that claims to have found a particular retrovirus in the blood of 85% of CFIDS/ME patients tested. While there are still some methodological questions about the study, and it’s still not clear whether the X-somethingy retrovirus is a cause or effect, it’s encouraging to know that researchers are working on the issue. Even though the CDC recently published its own study claiming that CFIDS/ME sufferers tend to have a history of childhood sexual abuse (um, no) and an “inability to deal with stress” (hard to say), at least some medical folks are looking for a non-psychiatric explanation for the all-around awfulness.
In the midst of all this news, I have noticed a few disturbing trends. I’m sleeping longer lately, the last few weeks or so. Wednesday night I slept for ten hours and could probably have slept some more, though I hadn’t been particularly sleep deprived. I’ve had a few sporadic days of brain fuzz and dizziness - I have a bit of it right now. On weekends I’ve really had to push myself to get out and move around; I haven’t had the urge to exercise that I had even a month ago. In homage to Stephen Colbert, I coined the term “fatigueiness” to describe how I feel when the old symptoms flare up. It’s not the good, honest fatigue of three hours on a bike, or even a session mowing the lawn and sweeping the patio, or even working a couple of 12-hour days on a project. It’s fatigueiness, and I’m not happy to feel any trace of it. I don’t know why it’s cropping up now. My CPAP machine is controlling my sleep apnea just fine, my medications are unchanged, and I haven’t been under undue stress lately.
Michelle, who is my mentor in all things CFIDS/ME, reminds me that there isn’t necessarily a reason, or not one that we can easily discern. Her relapses don’t follow a logical pattern. I don’t think my couple of months of regular, not super strenuous exercise can be causing my faint fatigueiness, but I’m not sure. I’m not going to back off yet, anyway.