Thursday, September 03, 2020

News From Our House - Sept. 3, 2020 - Riding the Rollercoaster

Just a quick update today before I need to get out of the recliner and make dinner.


Riding the Chronic Illness Rollercoaster

That's the title of the first chapter of my book, Finding a New Normal, and I have been living on that rollercoaster lately: one bad day, one good day, one bad day, one good day, repeat. I can't seem to ever string two good days together. I've written several times here about my downturn this spring and summer (see Crashes, Infections, and Treatments ... Oh, My!) and my discovering that a reactivation of HHV-6 is the most likely culprit. I have been on antivirals since early June now but am still struggling with the dosing. Too little, and I feel worse; too much, and I feel worse. It's a difficult balancing act between treating the infection and Herxing. I still can't tolerate a full dose (one pill a day) so am going back and forth between a half pill a day and one pill a day. Maybe I need to try to just stabilize at a half pill a day again.

I actually felt much, much better for a few weeks in August, so perhaps it is just the dosing that I need to get to a steady level again. My biggest issue is that my stamina is so much lower than usual. Normally, with all of the treatments that work well for me, I can be pretty active and function pretty well and rarely crash from over-exertion. Now, though, activities that I could tolerate 6 months ago--going to the grocery store, doing 20 minutes of muscle-building exercises on the floor (mostly lying on my back)--now send me into a crash, with horrible aches, the next day. This is why I've been back to that familiar rollercoaster life: feel better one day, too do much and crash the next. I thought I was making progress with the antivirals, so I am feeling pretty discouraged. I know I need to be patient and listen to my body. I'm just out of practice!

The Joys of Community

Twice in the past week, I was reminded of how important it is to find your people, connect with others, and be part of a community. With feeling so much worse than usual (plus the pandemic), I have been spending a lot of time holed up at home, in the recliner or--on bad days--lying on the couch. But, on Sunday, I recorded a podcast with Physios for ME about using a heart rate monitor to help ME/CFS patients stay within our limits. They had three physios (physical therapists in U.S. parlance) from their organization, one ME/CFS exercise researcher from Workwell Foundation, and several patients, including me. This is one in a series of podcasts they are doing to educate physical therapists about how to work safely with ME/CFS patients. Isn't it great that an organization like this exists?? It was a wonderful experience, "meeting" all these amazing people via Zoom, but the session lasted a bit longer than planned due to technical issues. Given my low stamina right now, I was exhausted and achy afterward, but I also felt exhilarated from the interaction, socialization, and just plain using my brain to chat with interesting, intelligent people! I will share the link to the videos as soon as they are posted. 

Then, on Tuesday, I totally forgot about a planned Skype meeting with an ME/CFS friend, Rachel. We originally met on Twitter and got to know each other better when she interviewed me for my new book (video at the link). Tuesday was one of my down days, so I wasn't up to Skype anyway, but when she reminded me of our appointment, I just called her on the phone instead. She wasn't feeling well, either, so this worked out well for both of us! We just chatted for about an hour (lying on the couch), first about treatments for OI, as planned, but then about all sorts of things. Besides the fact that she's a wonderful person and very pleasant to talk to, it's always such a lift to chat with someone else who GETS IT, who is living your same life. I was wiped out and not feeling well that day, but I felt uplifted and cheered by our conversation. The Joys of Community is another topic I covered in my recent book. For a sneak peek, take a look at the article I wrote for ProHealth that formed the basis for that chapter. It includes tips on how to find others you can connect with.

What I'm Reading and Watching

As I'm sure you understand, with limited energy and stamina lately, books, TV, and movies have been my primary forms of entertainment! You can see what I and my whole family have been reading this past week on my book blog, but here's a quick recap. 

I am STILL reading David Copperfield by Charles Dickens, my final book for my annual Big Book Summer Challenge, and a whopper! I'm still enjoying the novel itself but am tired of holding up this giant every night in bed. I am trying to finish it by Monday, so it will count for my challenge.

On audio, I just finished listening to another Big Book, American Dirt by Jeanine Cummins, which was excellent. It is the gripping story of a Mexican mother and son who must go on the run after a drug cartel kills their entire family and threatens their lives, too. They are heading for the U.S., but it is a harrowing journey, with the cartel never far behind. Besides being fast-paced and suspenseful, it is also moving and powerful and very good on audio. I also listened to The Dutch House by Ann Patchett, a novel about a brother and sister which was outstanding on audio. It's read by Tom Hanks, who completely inhabits the main character/narrator. Want Tom Hanks to read you bedtime stories? This one is a great choice! My review at the link.

We're watching a lot of fun TV shows right now, but I've only added on new TV review to the blog recently: Sex Education. It's a warm and funny British show about a teen boy with a sex therapist mother (played by Gillian Anderson) who starts his own business at school giving sex advice to his classmates, despite his complete lack of experience. We enjoyed two seasons (a a third is coming in 2021!) and laughed like crazy! It's a good pick-me-up show. You can read all about it at the link and see a trailer.

Last weekend, we also enjoyed a movie, The Rainmaker. It's an older one, from 1997, but with its all-star cast, excellent source material (adapted from a John Grisham novel), and directed by Francis Ford Coppola, it was highly entertaining--just a good movie to escape into! Read my full review and watch the trailer at the link.

How are YOU doing this week?
And what are you reading, watching, and enjoying?

I am happy to report that my problems with comments not showing up on this blog are partially improved--many more are showing up now after a change to the settings. They are still not all coming through, but give it a try! You can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

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