I haven't written an update post lately because I've been feeling seriously awful a lot of the time (and mildly awful the rest of the time), but today has been a good day--the first really good day in a long time. Here's the scoop from our house lately:
Up, Down, and All Around
My rollercoaster year continues! The past two weeks have been especially rough for me, with multiple days each week where I am completely crashed--what I call "flat days" (because I can barely get up off the couch). Even a single day this bad had become very rare for me in recent years, so this trend has been especially challenging for me. Even worse, it often feels like the worst days come with no rhyme or reason. I had gotten to a nice, steady dosing of a half pill a day with my antivirals and felt like I was doing better, so this was a nasty surprise.
I was flat on my back and achy all over this Wednesday, so I decided to skip my half-pill antiviral dose--maybe I needed a break because I was Herxing? But Thursday, I woke (barely, an hour later than usual) feeling even worse, with horrible aches and exhaustion all day. OK, that didn't work. So, yesterday, I went the other way and upped the dose to two half-pills a day (for a total of 1 pill a day, which is the intended dose). And guess what? I still slept an hour later this morning, but I woke up feeling good. In fact, I felt great most of today! Shocked but happy, I got on with my day, which included an out-of-state doctor's appointment with my son.
|Late summer bounty from the farmer's market|
That trip--an hour's drive each way plus about two hours in the office sitting up in chairs--usually wipes me out, but I actually felt good throughout it today, even well enough for a stop at a lovely Amish Farmer's Market on the way home, for some last-of-summer fruits and veggies (and some goodies, too)! We got home about 2:30 pm (usually nap time for me) for our daily smoothie. Granted, when I finally did take my nap at 3:30, I was ready for it, but to feel that good for so long today after the week I've had felt like nothing short of a miracle!
I'm a bit achy now at 6 pm, so we'll see what tomorrow brings ...
My Son's Improvements
I am way overdue for a detailed update on my son's multiple health problems, but you can read about how he hit bottom last year in New Diagnoses and New Treatments - ME/CFS and Lyme.
Fast-forward about 18 months, and I took a look at how he's doing compared to that time last year, in preparation for today's two appointments. We track how we feel each day on a 1 to 5 scale (1 = great and 5 = awful; you can see details of how we track here), and I graphed his monthly averages. In 2019, his "how he felt" number was dragging around 3 or even lower some months. That's not so good. So far, in 2020, he's been consistently up around 2.5 (some months even better), so that's clear improvement!
To look at the data another way (sorry--used to be an engineer!), I also track and graph % of time crashed. On our scale "crashed" means days when he's only at a 4 or 5--those flat days when you can barely get up, let alone get anything done. In 2019, his % of time crashed each month ranged from about 5% to 50%, meaning that some months, he was incapacitated half the time. That's rough. So far in 2020, his % crashed has ranged from 0% to about 17%, a huge improvement! He's had two months this year without a single crash day. In addition, he's noticed that he's able to be much more active--without crashing--now, driving 3 hours back and forth to his girlfriend every other weekend, working one night a week, and seeing friends more. I do also track exertion level, but I haven't calculated averages or made graphs yet!
So, while it can often feel, day to day, like things are the same, he has definitely shown some great progress in the past year and a half, and his medical team is committed to continuing that trend.
Some good information in the larger ME/CFS world last week. Check these out:
- Heart Rate Monitoring and Physical Therapy for ME/CFS - Physios for ME made a 2-video podcast about how to use heart rate monitoring and safely do physical therapy with ME/CFS patients. I appeared in both videos, and there is some excellent information here, for both physical therapists/physios and for patients, plus additional information from my blog posts and articles to help ME/CFS patients to better manage their conditions and prevent post-exertional crashes.
- New Website from U.S. ME/CFS Clinician Coalition - This group of top U.S. ME/CFS experts who have worked together for many years to stay up-to-date and offer their patients the best treatments formed this ME/CFS Clinician Coalition in 2018 and put out a paper on Diagnosing and Treating ME/CFS, but this new website goes a big step further in providing doctors all over the world with a one-stop website with loads of great information on how to diagnose and treat ME/CFS, including links to additional information on diagnostic criteria, other treatment info, OI, EDS, MCAS, and even disability and school accommodations. It's an outstanding resource. Now, it's time for us to help get the word out! Share this excellent website with your doctors.
What I'm Reading and Watching
As always, I ended my annual Big Book Summer Challenge on Labor Day (the first Monday of September). It was a record-breaking year for the challenge, with more than double the number of participants, and I enjoyed reading and listening to lots of Big Books (400 or more pages) this summer. You can read all about my books and the challenge itself here. If you missed out this summer, join the fun next May!
You might think I am sad that Big Book Summer is over, but September marks the start of another favorite reading challenge for me, the Readers Imbibing Peril (RIP) Challenge! It involves reading books in September and October with darker themes, like thrillers, mysteries, suspense, supernatural, and more (doesn't have to be horror or ghost stories, just anything darker). You can read about it--it's super-easy to join the fun this year--and see some of the books I'm choosing from at that link. I love everything about fall: the cooler weather, lower humidity, wearing jeans and sweatshirts, campfires, and ... the books!
We recently finished a new favorite TV show, Russian Doll. I've been hearing rave reviews of it since its release last year, and we finally got around to trying it. We both loved it and ended up binging its short season in a week! It's about a woman named Nadia who keeps reliving her birthday over and over, dying in different ways each time and restarting back at her birthday party. It's twisty, fun, dark, and hilarious with a great cast. Check out my full review and the awesome trailer at the link.
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