Thursday, April 28, 2022

New Video: Measuring Limits with Heart Rate Monitor & Step Counter

I just posted a new video today, all about Measuring Limits in ME/CFS and long-COVID, Using a Heart Rate Monitor and Step Counter.

You can watch the video on my YouTube channel at the link above or here: 

The video  covers:

  • What is post-exertional malaise (PEM), i.e. a "crash," and what causes it?
  • How is orthostatic intolerance (OI) a part of PEM?
  • How do you estimate your heart rate limits?
  • What should you look for when choosing a heart rate monitor?
  • How can you use a step counter to measure your limits?
  • How do you use both of these tools to stay within your limits and improve your condition?

If you prefer to read, check out my blog posts on:

Heart Rate and Post-Exertional Crashes

Counting Steps: Another Way to Measure My Limits

 And my article that was published on the ProHealth website:

Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS

Tell me about YOUR experiences pacing with a heart rate monitor, step counter, or other tools! I have a new Apple Watch, and I'd love some tips on what to do with it!

Tuesday, April 26, 2022

TV Tuesday: Transplant

I know, I know - there are so many medical shows on TV! And we already watch Grey's Anatomy, New Amsterdam, and The Resident. But, last winter, we started a new one, Transplant, that comes at the genre from a whole new perspective. We couldn't wait for season two, which just began a couple of months ago. We're really enjoying this medical show about an immigrant doctor trying to make a new life in Canada.

Bashir Hamed, played by Hamza Haq, is a Syrian refuge living in Toronto, struggling to build a life for himself and his little sister, after their parents--and almost everyone else they knew--were killed in Syria. He can't seem to get hired as a doctor in Toronto, since there is no infrastructure left in Syria to transmit his documentation and qualifications. But when a terrible crisis occurs, Bash lets instinct takes over and puts him own life at risk to save the lives of several strangers ... including Dr. Bishop, the Chief of Emergency Medicine of a local hospital who previously interviewed and rejected him. Now, Dr. Bishop is convinced and adds Bash to the ER staff, though he has to restart his career as a resident, in spite of his extensive experience. The rest of the ER staff isn't so sure about Bash, but his skills and compassion slowly win them over. In his personal life, Bash is struggling to care for his young sister, Amira (played by Sirena Gulamgaus), as they both try to assimilate into Canadian society, while still grieving their terrible losses. On top of all that, Bash is probably suffering from PTSD, as he experiences flashbacks of his horrific experiences in wartime and as a prisoner.

It's refreshing and enlightening to see a person of color and a refuge at the center of an excellent drama like this. The refuge crisis is huge in the world, and there are so many skilled immigrant workers--engineers, scientists, doctors--toiling away at manual labor jobs and barely making a living because they can't get hired in their field in the U.S. or Canada. Bash's story highlights these crises but never in a preachy way. His and Amira's stories are engaging and sometimes heart-breaking but also warm and sometimes joyful. And, while Bash is at the center of this show, it is still a medical drama, complete with new patient stories in each episode and the kinds of crazy experiences we have come to expect from TV ER's. The actors playing Bash and Amira are outstanding, but so is the rest of the cast, and the writing is excellent. Through each episode, as Bash and his fellow medical staff tackle new patients, the audience learns a little more about his backstory and his challenges (and joys). It's a thoroughly engrossing story, and we look forward to each new episode, rooting for Bash and Amira to find happiness in their new lives. And now I see a Season Three is planned; I can't wait!

Transplant is currently airing its second season on NBC. It is also available on Peacock and Hulu streaming services.

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!

Monday, April 11, 2022

Movie Monday: The Adam Project

Time travel and meeting up with your younger self? I'm in! When I heard about the plot of the new Netflix movie The Adam Project, I knew it was right up my alley and was even more excited to watch it after hearing some good reviews. My husband and I enjoyed this fun sci fi adventure that is also surprisingly heartwarming.

Ryan Reynolds plays Adam, a high-tech time travel pilot in 2050. His own dad, played by Mark Ruffalo, invented the technology that made time travel possible, but now it's fallen into the hands of unscrupulous leaders. In an attempt to go back in time and save his wife, Laura, played by Zoe Saldana, Adam ends up crash landing in 2022 near his childhood home. Wounded himself, and with his aircraft damaged, he seeks help from his 12-year-old self, played by Walker Scobell. Of course, his enemies track him there, and what follows is a fast-paced, high-tech chase through the present day with futuristic weapons. Big Adam is trying to save his wife, save the world, and keep his young self safe as well. The two Adams head back further in time to seek out their father (who's dead in 2022). There are lots of space-age chase scenes and lots of explosions, as the two Adams race against time (quite literally) to save themselves and the world.

This unusual multi-generational sci fi film has everything I love about time travel stories: twisty plots, paradoxes that make you think, and here, even reuniting with long-lost loved ones ... and your child self! It's all very cool and very twisty. The acting here is excellent all around, with an all-star cast, and newcomer Walker Scoville fits in perfectly. The Adam Project is a bit too heavy on explosions, chase scenes, and high-tech fights for my personal taste, but it is all balanced by humor and a whole lot of heart for an overall package that I loved. It's a very entertaining movie, with typical Reynolds' witty banter (times two) plus all that action, but what I liked best was the time travel stuff and the family reunions. My husband and I both enjoyed this fun, fast-paced, warm movie that left us both smiling.

The Adam Project is a Netflix original movie, so it is available exclusively on Netflix.

Friday, April 08, 2022

Counting Steps: Another Way to Measure My Limits

I finally have some cautiously optimistic news to report, after three long months of post-COVID/worsened ME/CFS hell: I've had some good days--and even good streaks of days--in the past couple of weeks! Of course, I was crashed the past two days, but I was having a really good stretch before that. I'll talk more about recovery from COVID and long-COVID in my next post; I want to be sure of what is working and why.

In the meantime, I thought I'd share a new-to-me approach I've been using as another way to quantify my limits and know when I am doing too much. 


Monitoring Heart Rate

In the midst of this post-COVID relapse that worsened my ME/CFS the past few months, I first turned once again to my trusty heart rate monitor. Typically, I do well enough with treatments that I know I am within my limits most of the time, and I only wear it when I am doing something particularly active, like taking a walk or going shopping. But with feeling crappy most of the time and crashing badly multiple times each week, I strapped it on and wore it continuously for a week or so, anytime I was awake. It confirmed what I suspected: my heart rate was higher than normal, and simple activities I could normally tolerate fine were now putting me over my limit and causing a post-exertional crash. Just being aware of that helped me to decrease my activity level, stay within my limits more, and reduce those crashes.

You can learn more about how to use a heart rate monitor to prevent post-exertional crashes in my blog post

Counting Steps

About that same time, I learned about another way to measure my activity level. Now, don't laugh, but I only just got my first smart phone in summer 2020, an iPhone, so I am still learning about all the cool stuff that comes with it. I was reading an article (in AARP Magazine!) about what you can do with a smart phone, and it explained that iPhones come with a pedometer app in the Health button (a white square with a red heart in it on the home screen).

So, I began carrying my phone in my pocket with me all day long (I was normally leaving it on the kitchen desk while I was at home). I found that tracking my steps gave me another way to quantify my exertion level each day.

Of course, as with everything else (including heart rate monitors), we with ME/CFS and long-COVID use these tools differently than "normal," healthy people. As you know from TV, magazines, newspapers, and the internet, there are all kinds of encouragements to increase your steps, to aim for 5000 or 10,000 steps a day to improve your health! Instead, I use it to monitor and stay below what I have figured out is too much for me.

First, I just carried it in my pocket every day and checked it the next morning. How many steps did I take the day before? Did I crash or do I feel OK today? I quickly came to find that during this worsened period, I could handle 2000-2500 steps a day, maybe even 3000, if I kept my HR below its limits and felt good. Approaching 4000 steps a day, though, was my danger zone; I'd almost certainly crash the next day. I was surprised to find that even on a bad crash day, I still often took 1500 steps, just inside my house (we have a large house with a lot of stairs).

Again, I know I have been in worse shape than usual since I had COVID in January, so I don't know what my "normal" limits are. But having an idea of my current limits gave me another tool to try to stay within them.

The Health app on the iPhone also graphs your daily step data for you.

Here are my steps so far today (I took a walk this morning, clearly shown by the spike):


My steps this past week--you can easily see I was crashed yesterday!

My steps for the past month--Those days over 4000 almost always correspond with a resulting crash the next day:

And, even though I only started carrying the phone in my pocket in the past two months, I still found the last year's data interesting (the phone was usually in my purse or pocket anytime I left the house):


The monthly averages clearly show that I was doing quite well last May, before I got my two COVID vaccines, which set me back a bit. Then, my activity level gradually increased from July through December, when my 22-month relapse finally ended. You can very clearly see the month I had COVID in January--I barely moved from the couch or bed! And since then (and since I began carrying the phone all day), you can see a gradual increase in my activity level, which corresponds to a gradual improvement in how I'm feeling. Cool, right?

Using my phone as a step counter is just another tool to help me quantify and measure my limits so I can better stay within them and prevent post-exertional crashes. I actually have a beautiful new Apple Watch that my husband gave me for Christmas that should make this even easier (as well as monitoring my heart rate, which was its primary purpose), but I still need to figure out how to set it up and use it! Maybe I can manage that now that I'm beginning to feel better.

Do you count steps or monitor your heart rate? 

How else do you use technology/your devices to help measure your limits or otherwise help with your ME/CFS or long-COVID? 

Let me know since I now have a new device with lots of cool features to learn!