I’ve spent this week so far feeling like a woman made of paper: weak and flimsy, prone to collapse. Trying my hardest to avoid taking more than one nap per day, I go outside to inspect my plants, pulling a weed here or there and watering what needs it with a watering can filled from one of the rain barrels my husband installed for me. Moving around wakes me up again, but it can also tire me out, especially when I go from being a bit chilly from the air conditioning to full-on hot flash with sweat pouring down my face and neck in the 85 degree Memphis heat. Then I’m back on the easy chair with the u-shaped fan I bought for hot flashes on full around my neck, sipping ice water and hoping my toes fade from bright red swollen piggies to my normal pale pieces of chalk.
Yes, I’m on hormone replacement therapy; after three miserable years of hot flashes that rose to about 25 intense, heart-stuttering incidents per day, I finally gave in. But HRT hasn’t stopped all my hot flashes, which can be triggered by overheating—something I’ve been sensitive to since the onset of my CFS/ME. For the fatigue, weakness, and sleepiness, there seems to be nothing at all to do. The number of vitamins and supplements I’ve tried over the years is truly astonishing, even to me: CoQ10 and various vitamin B supplements and D-ribose and more and more and more.
The latest tidbit I read, based on a comment in Stuff That Works, a crowd-sourcing site for chronic and complex illness, is that the preservative citric acid might be to blame for some people who experience my type of symptoms. Most citric acid used in processed foods is made from a type of black mold, and if you’re allergic to mold (like me), you could be accidentally contributing to your own symptoms every time you eat. I’m doing my best to look at every list of ingredients carefully, but since I already have to avoid gluten, my food possibilities shrink dramatically if I add in citric acid. Also, apparently the U.S. doesn't require that ingredient to be specifically listed; sometimes it’s in there as “natural preservatives.”
And then there’s the abdominal pain, mostly bloating and gas with some nausea and heartburn thrown in for good measure. About a year ago, my insurance stopped covering Dexilant, the proton pump inhibitor I’d been on for over 10 years. Since I’d recently gone gluten-free, I thought maybe I could heal my system enough that I wouldn’t need a PPI. But several other PPIs, probiotics, and an absent gallbladder later, my symptoms are, if anything, worse than ever. My very patient doctor was glad to prescribe Dexilant again when I found that the insurance now covers the generic version, but of course the insurance company didn’t communicate with me or her for two weeks and then just cancelled the order because they “needed more information from the doctor.” We will probably get it approved eventually, but in the meantime, I really don’t know if I’ve lost 6 pounds because of the Ozempic or because my stomach hurts 24/7 so I’ve been eating smaller, blander meals every day to try to baby it.
And don’t even get me started on the black dog of depression, or the megrims—a 500 year old idiom I prefer, because all dogs are cute, y’all. Studies have shown that obesity increases the risk of depression, and depression increases the risk of obesity, and many people with CFS/ME or other complex disorders deal with moderate to severe depression. Of course, those connections have screwed over a lot of people because doctors may attribute the fatigue to the depression and the depression to the lack of exercise, and then contribute to the depression by shaming a patient for their obesity.
Yeah. Tired yet? Me too. Now I have to go get an allergy shot before I take my second nap of the day.