Thursday, December 03, 2020

News From Our House: Dec. 3, 2020 - Ups and Downs

Wow, it's been two months since I posted a personal update here! That was in part because I suffered a very severe crash in October, but we've also had a lot of other things going on.


My Update

As I explained in my last News From Our House post, I experienced an unexplained downturn starting in March of this year. One possible cause, based on lab results, was reactivated HHV-6 (a herpes family virus similar to Epstein Barr Virus), so I took antivirals (famciclovir or Famvir), beginning in June. I stayed on them until the end of October, though the whole time, I continued to experience worsened symptoms, especially fatigue and flu-like aches (signs of immune activation). As I reported in that last post, I was doing a bit better and even managing a little activity ... when an even more severe crash hit.

I spent a lot of time reading in bed in October!

I have no idea what triggered this one, but I was mostly couchbound/bedridden for almost three weeks in October. After 8 months of feeling somewhat worse than usual, this was an unwelcome surprise! I went from being run-down and achy to being almost completely non-functional. I know you all get it and have been there yourselves. It was awful.

Finally, I slowly began to feel better and regain some stamina. I stopped the antivirals at the end of October (that was the end of my prescription) and felt somewhat better in November. I was still having more crash days than usual and some mild aches, but I was able to begin to start walking and going to the grocery store again. 

Happy to be out walking with my husband again in November!

Two weeks ago, I ran out of my Lyme treatment (that I'd been on again since the beginning of the year) and decided to try going off it. After all, when my Lyme recurs (as it tends to do every few years), I usually just treat it for a few months. This year, I didn't want to stop treating Lyme while I was on antivirals (or vice-versa) because Lyme, like ME/CFS, can cause old viruses to reactivate. And I still felt about the same those two weeks off the Lyme treatment, though I began to notice some aches in my knees again (that is one of my Lyme symptoms). So, I ordered more treatment (I take A-L Complex from the Byron White protocol) and restarted it at the beginning of this week, and guess what? I've been feeling really good! I've walked every day this week, gone shopping, and even restarted (very slowly and while lying on the ground) some gentle weight work. I was a little achy today, but that's probably due to stress yesterday. So, the good news is that I am feeling better, but the bad news is that apparently, my Lyme infection is still active, after almost a year of treatment. I've decided to try seeing my son's Lyme specialist to see if she has any new ideas for me.


Big News at Our House

The really big news here is that our 26-year-old son (ME/CFS since age 10 and tick infections since age 12) moved out at the end of October! Though he lived on his own while he was in college, he hit bottom with his condition in spring 2019 and moved back home. He's been working hard (with two new medical specialists) to try to improve his condition and to find a job. His degree is in Environmental Engineering, but he has no job experience (which even entry-level positions require) because he used all his time and energy at school taking classes, with nothing left for co-ops or internships like other students. So, it's been challenging for him--and frustrating--but he found a job that is a good first step for him. It's not engineering, but it is in the environmental field, so that's a step in the right direction. He moved to his girlfriend's in another state, and they are renting a basement apartment from her parents, so there's a safety net there in case things don't work out for him or he can't manage the job. His first month was challenging, but he's doing well and is thrilled to be out on his own. For the parent of a chronically ill kid, this is like the Holy Grail!


Recent Blog Posts

While I haven't written one of these updates in awhile, I did manage some blog posts in the past two months. Here are a few that might be of particular interest to you, in case you missed them:

The October Slide - ME/CFS and Infectious Triggers - if you experience a downturn every fall and winter, then this post is for you! I explain why this is such a common occurrence for us, what you can do to prevent it, as my son and I mostly have, and what to do when it happens (as it did to me last month!).

Official Statement on COVID-19 Long-Haulers and ME/CFS - news media around the world have been reporting on so-called COVID-19 "long-haulers," who recover from the virus but are still debilitated by fatigue, other symptoms, and exercise intolerance. Sound familiar? The U.S. ME/CFS Clinician Coalition published an official statement, explaining what ME/CFS is and how to diagnose and treat it. Includes lots of scientific references--perfect for sharing with doctors.

Weekly Inspiration: Two Inspiring Podcasts - check out these two podcasts that I am enjoying - I especially love Everything Happens.

Weekly Inspiration: Busting the "Everything Happens for a Reason" Myth - this is also from my new favorite podcast! I shared an inspiring TED talk by the podcast host that made me both laugh and cry; she is wonderful and she truly "gets it."

Weekly Inspiration: Chronically Ill Holiday Gifts and Tips - a collection of posts from other bloggers, featuring holiday gift guides and tips for managing the holiday season - some great stuff here!

Giving Tuesday - Multiply Your Donations! - list of ME/CFS-related causes to donate to, plus easy ways to raise money for ME/CFS research (or other causes) without spending a dime, just by online searching and shopping. Though the post was for Giving Tuesday, the information and links are still valid (and some of the doubling and tripling of donations deals are still open!).


What We've Been Watching and Reading

First, if you are in need of some cheering up right now, check out Hunt for the Wilderpeople, a movie available on multiple platforms (links at the review). My husband and I loved this warm-hearted, very funny family adventure set in the New Zealand outback. Read my review at the link and watch the trailer to see what I mean!

For a very different, darker kind of entertainment, my husband and I have been enjoying the Western drama Yellowstone, starring Kevin Costner. We watched seasons 1 and 2 earlier this year, and season 3 was just released on Peacock network (which is free). This is basically a high-quality soap opera, set in the modern west on an enormous ranch in Montana. The scenery is gorgeous, the actors are excellent, and the plot is super-twisty. 

We also enjoyed a dark and suspenseful thriller, The Stranger, a Netflix limited series based on a Harlen Coben novel. It's a complex thriller where a stranger comes to a town and starts telling people secrets about their family or partner, etc. that they didn't know, basically ruining lives. It was very good and kept us riveted!

As for books, being so badly crashed in October meant a lot of extra reading time for me! As I like to do, I read for the season, focusing on darker books in the fall, like mysteries, thrillers, and more. I read some really outstanding books in October. You can see my monthly summary here, from my book blog, including which books I read, which were my favorites, and how I'm doing with my annual reading challenges.

Last month, I changed my reading focus to #NonfictionNovember (I enjoy theme-reading, as you can see!). Because I was so sick in October, I got way behind in writing books reviews, so I haven't reviewed any of my nonfiction books yet, but easily my favorite of the month was the latest memoir from Michael J. Fox, No Time Like the Future: An Optimist Considers Mortality, which I listened to on audio. Like his previous memoirs, this one was warm, thoughtful, moving, and very funny. He reads it himself, and it's a treat to hear that familiar voice telling stories from his own life. As with his previous memoirs, his life with Parkinson's Disease is a big part of it, so it's even more relevant for anyone living with a chronic illness, and in this one, he also talks about aging.

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

Leave a comment below (most are coming through now), or 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.

No comments: