Saturday, April 23, 2022

News From Our House: COVID and More

Wow, I just looked back and realized I haven't written one of these updates since last September! Where has the time gone? These are just short health updates on what's been going on with my son and I, plus some fun stuff at the end: books, movies, and TV we're enjoying!

If you're new to my blog, I've had ME/CFS, an immune disorder, for 20 years, since 2002. I also got Lyme disease about 15 years ago (and still have it, due in part to my crappy immune system). My older son has had ME/CFS for about 18 years now, and Lyme disease--plus two other tick infections--for about 10 years. He's 27 now. So, a quick update!



In the first week of January, COVID hit my family. My 96-year-old father-in-law moved into a nursing home at Christmastime, after he broke his hip, and my husband, younger son, and I were all visiting every day. The care home had a big COVID outbreak, so my FIL tested positive January 2nd, my son's symptoms began on January 3, and I succumbed on January 5. Somehow, my husband escaped! You can read about how we fared with COVID in January in this post, My Experiences with COVID and ME/CFS

Little did I know when I wrote that post that my post-COVID troubles were just beginning. For the past few months, I have continued feeling worse than usual, with very poor energy and stamina, needing more sleep than usual, and with much worse post-exertional malaise (PEM) than usual. With treatments for ME/CFS (especially for OI and immune dysfunction),  I had gotten to the point where I could function pretty well and manage walks, grocery shopping, etc. with post-exertional crashes quite rare. No more.

I've been working with my ME/CFS specialist, but every prescription she tried to call in for me was refused for various reasons--there are very tight restrictions on all the COVID treatments right now. Long story short, I did finally get one type of COVID antiviral just this week, but I haven't tried it yet. 

By the time that prescription came through, I had already started on a short course of prednisone (steroids)--just five days. The theory is that my immune system's been in overdrive ever since COVID (I've had flu-like aches, a common immune symptom, daily since then), so the steroids will suppress my immune system for a short time, and then--hopefully!--allow it to reset in a more normal state. We'll see.

I'm on day three of the steroids and so far, the only effect I've seen is insanely high heart rate! Just what I needed with my OI, right? The first day I took them, I felt no effects at all the first half of the day and then woke from my nap, lying in bed, with my heart pounding like crazy. All that afternoon and evening, my heart rate (HR) was 120+, even while lying down! I spent hours lying flat with my legs elevated, but it was still horribly uncomfortable, and of course, I worried about a massive crash the next day. 

HR at 120 bpm lying down!

Luckily, I was able to get some extra low-dose beta blockers to add to what I already take for OI, and that's been helping each afternoon and evening. My heart rate monitor is still beeping at me as I sit here in the recliner typing (amazing how much typing raises my HR!), but it is at least tolerable and closer to my limit, rather than continuously 20 bpm above my limit. Still uncomfortable, but it should get better each day, as I reduce the steroid dose.

Once I get through this--and possibly also the COVID antivirals--I will write a more focused post on post-COVID/long-COVID. I'm hoping one of these treatments helps me get back to my "normal" baseline, which seems pretty darn good from this perspective!

Note that I wrote a blog post, What to Do If You Get COVID, with tips applicable to both those with ME/CFS and anyone who gets COVID (or develops long-COVID), to help prevent some of the worst complications and outcomes.

I also added another new post recently, Counting Steps: Another Way to Measure My Limits, about how using my phone's step counter has given me another way to know when I am doing too much, in addition to my heart rate monitor. This has been useful during these past months of lower stamina.

My Son - Continued Good News

Thankfully, our older son (the one with ME/CFs and tick infections) doesn't live with us and so was able to avoid the COVID outbreak. He has also had his booster shot--he's been very lucky to have absolutely no lingering effects from any of his three COVID vaccines--just the standard 2-3 day response a healthy person might have. I'm grateful for that.

In fact, he's been remarkably stable for the past year or so. He's still working part-time at the job he started as a summer intern last year. He's looking for a full-time job in his field, applying and interviewing for everything he can find. He continues to move forward in treating his three tick infections. His GI symptoms and OI remain well-controlled. Overall, he is doing quite well--he is happy and able to function most days. We are very grateful for this and hoping he can get a job soon. He's been sick since he was ten years old, and all he's ever wanted is to live a normal life.

New Videos

I have a YouTube channel that features both videos on living with chronic illness and videos about books and reading (you can access each playlist at the links). Since I haven't written an update since September, some of these aren't all that "new," but these are the chronic illness videos I have added since then:

What We're Watching and Reading

Again, it's been a LONG time since my last update, so I won't try to recap every movie and TV review. 

You can see my picks for Best of 2021 in a couple of posts from January, with lots of great ideas for what to watch. Favorite Movies Watched in 2021 includes my top picks in different genres, plus a list of all of the movies I reviewed last year. Since I only review the ones I enjoyed, these are all good picks! Note that at the end I list more movies I watched but didn't review--some due to time/energy, not because I didn't like them, so check out my notes on those, too.

So far, in 2022, I've reviewed four movies, all excellent:

  • Finch - warm, funny, moving post-apocalyptic film starring Tom Hanks and his robot companion
  • Parasite - won Best Picture Oscar in 2019 ... for good reason!
  • Honey Boy - semi-autobiographical story of Shia LeBeouf's dysfunctional Hollywood childhood
  • The Adam Project - time travel action-adventure with Ryan Reynold's character working with his 12-year-old self to save the world. Great cast and a lot of fun!
And, for TV shows we've been enjoying lately, check out my Favorite TV Shows Watched in 2021 post, which also includes my top picks in different genres plus other reviews of TV shows I enjoyed last year.

I've only added one more TV review so far this year, but it's an outstanding one: The Handmaid's Tale. Wow, this show has totally blown both my husband and I away! Drama, action, a horrific dystopian world, and a fierce heroine to cheer for. Everything about it is excellent, from the acting to the sets to the writing. We can't wait for season 5.

As for what I'm reading ... so many great books! It's already been an incredible reading year for me. You can check out some of my book videos on my Books Playlist on YouTube. The monthly summaries provide a nice quick review of what I read the previous month - not a bad book in the bunch so far this year! Note that I read a lot of middle-grade books in March for a Middle-Grade March Readathon, so if your reading abilities are limited, and you enjoy middle-grade, check out my March Reading Wrap-Up. Every monthly summary includes audio books, too.

On my book blog, you can check out my Best Books Read in 2021 post for some really great choices - my top picks read last year in different genres/types, including audio and middle-grade and YA.

I think you're all caught up on my life now!

What's been going on in YOUR world?

How's your health been so far this year?

And what have YOU been reading and watching? I'm always looking for good recommendations!

You can reply in the Comments below or on Twitter or this blog's Facebook page. I'd love to hear from you!


A Chronic Voice said...

Thanks for sharing your experiences, Sue. I hope everything and everyone slowly improves. I totally get the prednisone thing. I wrote an article here:

I've been on them for nearly 20 years as nothing else works. It impacted me way worse in my teenage years as it clashed with puberty too. Sending you lots of good thoughts!

Sue Jackson said...

Whew, my 5 days on them was rough, Sheryl! But I know many of people rely on them long-term. Different people, different diseases, different solutions - we are all fortunate to have some options.

Thanks so much for stopping by and taking the time to comment - I'm glad you found something that helps!!