Thursday, June 23, 2022

News From Our House: Chronic Illness Update

I realized this week that it's been two months since I recorded a video related to chronic illness (I've done lots of books videos in between because they are usually short and take less energy!), so I decided to record a little update of my past few months. 

This is just a casual conversation about the ups and downs of my illness recently, but it also includes some information about how I came out of my post-COVID relapse and how I track my symptoms/illness severity:

Oh, and I included some photos and video clips of fun stuff, too, including some very peaceful nature videos!

You can see all of my chronic illness videos on my YouTube channel.

In this new video, I refer back to a recent blog post, ME/CFS, Lyme & COVID: Relapses and Recoveries for details of what helped me recover from my various relapses.

I've already had two crash days this week (unusual for me) and am trying to take it easy today, so that's it for now. Please let me know if you have any questions.

How is YOUR chronic illness life lately?

Tuesday, June 14, 2022

TV Tuesday: The Flight Attendant

Our adult son is living at home now, due to his job circumstances. Since he's enjoying free cable and all of our streaming services, he decided to buy HBO Max and share it with us (our profile is named Parentals). One of the shows I immediately started, that I've wanted to see since its release last year, is The Flight Attendant. It's based on the novel of the same name by Chris Bojhalian, one of my favorite authors, though I haven't read this particular novel yet. My husband and I are loving this unique twisty thriller with a dark sense of humor.

Cassie, played by Kaley Cuoco of The Big Bang Theory,  works as an international flight attendant who takes full advantage of her youth and freedom. Cassie is the consummate party girl, going out every night, drinking heavily, and sleeping with whomever she finds attractive. On one flight to Bangkok, working alongside with her fellow flight attendants and friends, Megan (played by Rosie Perez) and Shane (played by Griffin Matthews), Cassie flirts with the cute guy in First Class 3-C and ends up going out with him that night. That cute guy is Alex, played by Michiel Huisman, and he and Cassie really hit it off, going from one restaurant/bar to another, until they end the night together in Alex's luxury hotel room. Cassie really likes this guy, and Alex seems to feel the same way about her. Unfortunately, their perfect night together is marred when Cassie wakes up with Alex dead in a puddle of blood beside her and no memory of how the night ended. Cassie has a drinking problem, and this isn't the first time she's been blackout drunk, but it's the first time she's been involved in a murder. Shocked and terrified, Cassie leaves the hotel, tells no one, and gets on the flight back to NY, seriously shook up. Of course, the authorities soon figure out that she was with Alex. Thus begins a frantic, whirlwind mystery/thriller, as Cassie, the FBI, and some mysterious (but clearly bad) people all try to figure out what happened to Alex. Cassie herself is, of course, a suspect, and her spotty memory doesn't help. She avoids her kind, stable brother, Davey (played by T.R. Knight, who will always be George from Grey's Anatomy to me), and enlists her best friend, Annie (played by Zosia Mamet, of Girls fame), who's a lawyer, to help her, but soon she is running from both criminals and the authorities, as she tries to get to the bottom of Alex's murder.

Wow, this is one twisty thriller! Each episode is filled with surprises and new plot turns we never see coming. Kaley Cuoco is outstanding in her role as Cassie, the perfectly unreliable narrator who comes across as a hot mess but is nonetheless likable. The rest of the cast is also outstanding. The writing and dialogue are quick, witty, and engaging, with a dark sense of humor that makes you laugh at Cassie's escapades, even as you feel sorry for her, root for her, and fear for her life! We have just started season two, and with each new episode, we never know where the plot is headed or what is in store for Cassie and her friends (and enemies). We're thoroughly enjoying this fast-paced, zany, unpredictable, and fun show and can't wait to see what happens next!

The Flight Attendant is an HBO original and is available on HBO Max or YouTube TV.

Friday, June 10, 2022

New Podcast: Spoonies with a Purpose

A couple of weeks ago, I shared a new chronic illness podcast, Sick Lessons, started by one of my favorite bloggers.

Today, I have another new chronic illness podcast to share with you, from another favorite blogger!

It's called Spoonies with a Purpose, and the host is Julie Holliday of the ME/CFS Holistic Coach blog. Julie's focus on her blog and in her coaching is "supporting you to find harmony in body, mind and spirit, and to free yourself to live a life of peace and purpose!" I've known Julie for many years; she used to be my editor for articles I wrote for the ProHealth website. She's a wonderful, compassionate person, with some great ideas on how to support yourself in a life of chronic illness.

You can watch/listen to her first podcast episode on her blog (there's a video and also a "Listen Here" audio link) or on YouTube. I'll also include the video below:

This first episode features an interview with Jacqueline Taylor, a patient with ME/CFS and fibro who used her own experiences to reach out and help others. It's an interesting interview, and I learned a lot, too (did you know face yoga is a thing??). Check it out and then subscribe to Julie's new podcast! I can't wait to see more!

Friday, June 03, 2022

ME/CFS, Lyme & COVID: Relapses and Recoveries

I'll admit I've been procrastinating on writing this post because a) the cycle of relapses and recoveries kept extending, and b) well, it's complicated!

So, here I will simplify it as much as I can: what I've been through the past 2+ years and what I think helped me get back to my "normal" baseline (which isn't too bad, comparatively!).



March 2020 - I suddenly and inexplicably got worse. I'm still not sure exactly what triggered the relapse (I tested for COVID over and over since the timing was suspicious but had no sign of infection or even exposure back then). My best guess is that my Lyme got worse because I wasn't treating it effectively and caused a cascade of worsenings/relapse.

That relapse continued for over a year, though things very gradually improved, as I added new/revised treatments (see below).

May 2021 - I was finally feeling good again, after many treatments and a gradual improvement over many months--pretty much back to my "normal" baseline.

May & June 2021 - I got my two COVID vaccines. I chose Moderna because data showed it caused the fewest long-term relapses among those with ME/CFS. They definitely worsened my overall condition & symptoms again.

Late November 2021 - Once again, I had gradually improved (plus some treatments helped) and was back to my "normal" baseline again, able to be active and enjoy the holidays.

January 5, 2022 - I caught COVID at my father-in-law's nursing home, where they had a big outbreak (he and my son also caught it). I was severely ill--mostly bedridden--for about 3 weeks and then began showing small improvements, very gradually.

I continued to feel worse than usual for the next four months, though there was some very gradual improvement. I could tell my immune system was stuck in an over-active state because of heavy fatigue and constant flu-like achiness.

End of April 2022 - With my doctor's help, I tried a somewhat risky treatment, but it worked, and I returned to my "normal" baseline with ME/CFS and have remained there since, in spite of a very busy & active May.


Treatments That Helped:

So, what helped me get over these relapses and back to my normal (with ME/CFS) level of functioning? It's complicated. I am very analytical and greatly annoyed by unexplained worsenings of my condition! I am also relentless when it comes to trying treatments and finding solutions, so I tried a lot of things. Because I'm analytical, I keep a lot of data, so I have a pretty good idea of what helped the most.

As best as I can tell, these are the treatments that helped me get back to my normal baseline (which is quite good for someone with ME/CFS).

New and More Effective Treatments for my Chronic Lyme Disease:

Even before that relapse that began in March 2020, I saw signs that my Lyme disease was not well-controlled. My right hip was starting to hurt, which is a subtle sign I often don't recognize right away that the Lyme bacteria is shifting into other joints (usually, it affects my knees). So, when I suddenly got a lot worse in March 2020, my first step was to begin seeing my son's Lyme specialist. I hadn't seen a Lyme doctor myself in several years because I thought my Lyme disease was "under control." Ha! Now I know better.

The Lyme specialist immediately began adding new treatments and ramping up older treatments that I hadn't kept up. I brought her new research from Johns Hopkins on which herbals are most effective against Lyme disease (more effective that the prescription antibiotics usually used). She was already familiar with most of that, so between the two of us, we began adding lots of new treatments, including:

  • Restart A-L Complex (Byron White protocol), which I had used off and on for years. She also advised me to increase the dose, up to 30 drops twice a day.
  • Add Stephania (used cautiously and at lower doses, as it can add to the effects of beta blockers, which I also take). I only took it for a few months.
  • Add Samento (Cat's Claw).
  • Add Biofilm Defense.
  • Add Japanese Knotweed (later, in early 2021)--one of the herbs determined to be most effective in that Johns Hopkins study.
  • Add Crypto-Plus

All of these treatments together--especially the increased dose of A-L Complex and addition of Knotweed--led to eliminating my Lyme symptoms and improving my overall condition, gradually.


Treating Reactivated Viruses:

It's an old story in ME/CFS--our immune dysfunction causes old, dormant infections to reactivate, especially herpes-family viruses, like Epstein-Barr Virus, HHV-6, CMV, HPV1, and others. 

In my case, testing showed that EBV and HHV-6 were--once again--very positive and reactivated, probably from the Lyme infection going untreated and triggering a domino effect of immune dysfunction. 

I also tested positive for adenovirus, which was curious because it's a common virus that normally causes a mild cold in healthy people but not something that typically pops up for me. This could also have been a contributing factor in triggering my long relapse--exposure to a simple cold virus. It has stayed in my bloodstream since then, so I avoided the J&J vaccine, which was based on an adenovirus.

For these ramped-up viruses, we added/increased:

  • Restart Famvir (famciclovir) and then replaced it with Valtrex (valaciclovir) a few months later--I take these prescription antivirals that work against herpes-family viruses every few years when mine get too active again. I'm still on Valtrex.
  • Add L-lysine, a potent herbal antiviral.
  • Increase doses of olive leaf extract and emulsified oil of oregano, two herbals that are effective antivirals, antibacterials (so help with the Lyme, too), and antifungals.


Diagnosed and Treated Hypothyroidism:

In early 2021, my Lyme specialist ran a full thyroid panel, and much to my surprise (because I get my thyroid tested pretty often), this time it showed low T3. She began treating me with a very low dose of Cytomel (liothyronine). Later, after repeat testing showed it was still slightly low, she increased the dose a bit.

I didn't necessarily see an immediate improvement in symptoms, but having a messed-up thyroid couldn't have been helping me. And I did immediately lose seven normally very hard-to-lose pounds!


Supported Immune System

In preparation for the COVID vaccines, I took the advice of ME/CFS experts and added some vitamins and minerals to further support healthy immune function. I was already taking most of the supplements they recommended, but I added/increased a few:

  • Increased selenium
  • Increased zinc and switched to a more readily absorbed form (zinc glycinate)
  • Added liposomal vitamin C (1g per day)--the liposomal form is less likely to cause stomach upset.


Increased Inosine

Finally, though this also falls under the category of supporting my immune system, I am listing it all by itself because it's really important.

ME/CFS is, at its heart, an immune disorder and most of our symptoms stem from that dysfunctional immune system. We have found three treatments that help to normalize the immune system (in addition to treating underlying infections) that have greatly helped to improve our conditions over the years:

  • Glutathione
  • Low-Dose Naltrexone (LDN)
  • Inosine

Find more details on all of these immune system treatments, which are all inexpensive and readily available, in my blog post on Treating Immune Dysfunction in ME/CFS.

So, I was already taking all of these, but purely by mistake, I increased my dose of inosine in November 2021--I just miscounted the pills in my weekly reminder boxes one week! I simply went up from 5 a day to 6 a day for my "high dose" weeks (you alternate weeks with high dose and low dose), and like magic, after months of struggling, I finally returned to my "normal" ME/CFS pre-vaccine baseline.


Post-COVID Desperation and Steroids: 

So, I was already doing all of that above when I got COVID in January and went into another relapse afterward. For four months, I struggled with severely worsened fatigue, constant flu-like aches, never feeling good, and about 2-3 days a week, completely crashing so badly that I was couchbound or bedridden. I was also severely limited in what I could do.

Since this relapse was definitely triggered by my COVID infection, my ME/CFS specialist tried--and tried and tried--to get me COVID antivirals, but between limited supply and restricted use, I was unable to get them.

If you have lingering symptoms post-COVID (worsened ME/CFS and/or "long-COVID"), this should be the first thing you try: antivirals specific to COVID. There are two currently on the market, and they should continue to become easier to access: Paxlovid and Molnupiravir.

I did finally get molnupiravir but never had a chance to try it because by then, we had tried something else.

My constant flu-like achiness (like recurring sore throats or swollen glands or feeling feverish) told my doctor and I that my immune system was still in overdrive, over-reacting even though the acute viral stage was over. Given this, I asked if I could try a very short course of steroids, and she agreed. 

Steroids suppress the immune system, so they are usually not a good idea for those with ME/CFS (and definitely not long-term). Although parts of our immune systems are overactive, other parts are underactive, so suppressing the entire immune system is normally not effective for us and can do some harm.

The idea in this case was to try a very short course of steroids--just five days of low-dose prednisone--to temporarily calm down my immune system, with the hopes that when I went off it, my immune system would come back up in a more normal state. And it worked! Since then, I have felt pretty good (for me), back to my "normal" ME/CFS baseline and able to be more active again. And no more aches!

Steroids are not without risk, even when used short-term. They suppress your immune system, making you more susceptible to infection, so for that week, I was even more careful than usual, avoiding people and crowded places and wearing my mask even more diligently than usual. 

In addition, I had a very uncomfortable side effect: my normally high heart rate rose even higher. The first day I took prednisone, I woke from my nap (lying in bed), with my heart feeling like it was going to leap right out of my chest. That afternoon and evening, my heart rate--which is normally well-controlled with low-dose beta blockers--was 130 bpm lying down with my feet up! I contacted my doctor, and she quickly called in some extra beta blocker (just a small additional dose of what I already take) for me to take in the afternoons while on prednisone. That helped a lot.

Lessons Learned

So, all of this may seem very specific to me and my situation--and it is--but all of it is applicable to anyone with ME/CFS or long-COVID because these were all common problems underlying our disease. Some things that everyone with ME/CFS or long-COVID can try:

  • Diagnose and treat underlying infections--because of our immune dysfunction, we almost always have infections behind the scenes making things worse: undiagnosed tick infections (very common in ME/CFS), old reactivated viruses, yeast overgrowth, fungal infections (including mold exposure), and of course, in the case of long-COVID, COVID itself. All of these can be diagnosed and treated.
  • Check Endocrine Function--the immune dysfunction of ME/CFS messes up our endocrine systems, which are responsible for the hormones that regulate everything in our bodies. So, get a full thyroid panel (not just a screening test), check 24-hour cortisol levels (with a saliva test), and ask your doctor to check other hormone levels. 
  • Treat Immune Dysfunction--as I said, this is at the heart of ME/CFS and causes many, if not most, of our symptoms. Normalizing immune function will help to improve everything. More details on simple, inexpensive immune modulators (and also treating underlying infections) in my blog post on Treating Immune Dysfunction in ME/CFS.
  • If you are suffering from long-COVID or a lingering relapse of your ME/CFS due to COVID--ask for COVID antivirals, in addition to the other things listed here.
  • Effective ME/CFS Treatments--for a full overview of the treatments that have helped my son and I the most over the past 20 years (and the reason why these relapses didn't completely make me bedridden), see my Effective Treatments for ME/CFS post, for our experiences. 

As for me, I am happy to be back to my own "normal," still needing lots of sleep at night and a daily nap but with crashes rare now and able to take walks and do other active things again! I'm slowly regaining my stamina.




Tuesday, May 31, 2022

TV Tuesday: Shining Girls

Sometimes, I just want to start a review with, "OMG, I am LOVING this so much!," and that is true of Shining Girls, a new Apple TV series based on an excellent novel. My husband and I both read the novel back in 2014 (my review is at the link but contains spoilers that are revealed early in the book but not in the TV show, so I recommend reading it after you are partway through the TV series). We both thought the book was so good that I also bought it for my dad for his birthday, and he loved it, too. So far, the TV series is capturing what made the book so outstanding.

Kirby, played by Elisabeth Moss, is living a somewhat limited life, where she is clearly trying not to bring attention to herself. Though she used to be an up-and-coming reporter, she is now working as an archivist clerk for the Chicago Sun-Times, usually hidden away in the basement. She lives with her mother, though something strange is happening to Kirby. She keeps meticulous notes about the details of her life because sometimes things inexplicably shift. For instance, she comes home and has a cat named Grendel, except that some days when she comes home, her pet Grendel is a dog. She was brutally assaulted years ago and ever since, this uncontrollable, random shifting has been occurring in her reality that constantly keeps her off-balance. Then a new woman is brutally murdered, and Kirby sees unmistakable similarities with her own attack. She feels compelled to look into it and gets a reporter named Dan, played by Wagner Moura, involved in helping her to investigate. Dan has his own issues, with drinking and being deemed unreliable by his colleagues, but together, they begin to find other cold cases going back decades that match Kirby's attack and the recent murder. Meanwhile, the audience sees--but Kirby is unaware of--a creepy, mysterious man, played by Jamie Bell, stalking another woman and lurking around the city.

As I mentioned, some key aspects of this mystery are spelled out early in the novel but are only hinted at in the first episodes of the TV show, so I've been careful not to include any spoilers in my review. We've watched four episodes so far (of eight planned), and the suspense and mysteries are mounting. Of course, Elisabeth Moss is outstanding here as Kirby (is there nothing she can't do?), and the supporting cast is excellent also. We already knew from reading the book that the premise is wonderfully imaginative (and chilling), and it's fun to see the secrets beginning to unspool. We are completely hooked so far, and it's quickly become my favorite TV show among the dozen or so we are currently watching. Like I said, I LOVE this show! It's a mystery/thriller unlike any other.

There are currently seven episodes of Shining Girls available on Apple TV, and the final episode drops this Friday, so it is definitely bingeable! Just leave the lights on ...

Wednesday, May 25, 2022

Great New Chronic Illness Podcast!

It seems I didn't post anything new here last week. Life's been super-hectic! I had four trips in three weeks, and now I'm scrambling to catch up on everything I got behind on while traveling. The good news is that I am finally fully recovered from the COVID I got in early January and will write more about that next week. 


This week, I am fully immersed in getting ready for my annual Big Book Summer Challenge on my book blog, which kicks off this Friday! Everyone is welcome to participate in this easy-going event (even if it's Big Book Winter where you are!). You set your own goals to read one or two or however many Big Books you want between the end of May and beginning of September (audios count, too!). And a Big Book is any book with 400 or more pages. This is the 10th anniversary, so I have some special things planned. The details will be posted on my book blog and on my YouTube channel this Friday, so check it out and join the fun! It's a great way to add some joy to summer when you can't manage big vacations or other special events. Everyone enjoys chatting online about what they're reading and hearing about great books from each other.

And Big Book Summer and I are featured on the latest episode of the Book Cougars podcast! We also talked about my book and this blog.


While I'm tied up with that, I thought I'd quickly share a great new chronic illness podcast that just debuted. It's called Sick Lessons and is hosted by Sheryl of the A Chronic Voice blog. Sheryl and her blog have been an active, essential part of the chronic illness community online for years, so I was so excited to hear about her new podcast venture!

In her first episode of Sick Lessons, Sheryl interviews another wonderful blogger, Julie Holiday of the ME/CFS Holistic Coach blog (formerly ME/CFS Self-Help Guru). Julie is fabulous, with some great ideas on her blog and in her coaching for living a more peaceful, satisfying life with chronic illness. And she used to work as my editor for the ProHealth website, so I have worked closely with her and have a great amount of respect for her. You can watch that first episode of Sick Lessons here:

In it, Sheryl talks to Julie about her illness journey, acceptance, healing, and more. It's a great interview and very relatable and inspiring.

Sheryl also asked me to sign up for an interview for her new podcast, but I don't know if we'll be able to work that out. She's in Singapore, and I'm on the U.S. East Coast, so I am sound asleep during all of her interview slots! We'll see if we can work something out. In the meantime, check out both blogs and this first podcast episode - you'll find lots of inspiration in all three spots!

Thursday, May 19, 2022

Throwback Thursday: Where It All Started!

I got an interesting e-mail a few weeks ago. It was from LiveJournal, one the first (perhaps the very first?) early blog platforms, wishing me a happy 19th anniversary! I had forgotten all about my LiveJournal account, so I clicked the link and stepped back in time ...

I only wrote 14 short entries, between 2003 and 2006, on the site (and then switched to Blogger in 2006), but that brief glimpse into our early years with chronic illness is a fascinating one!

In those very short posts during that timeframe, you can see a huge part of our illness journey. I was dealing with my own brand-new diagnosis of ME/CFS (called CFIDS back then), my son's first brush with Lyme disease, the beginnings of trying treatments for ME/CFS, my struggles with parenting while sick, the extreme highs and lows of chronic illness, and finally, the beginning of my sons' experiences ME/CFS.

In addition, in those few posts, you can see the beginnings of this blog, my mission to find effective treatments, and even my first thoughts of reaching out to find others to connect with.

And here we are, 19 years later! I've been writing this blog for 16 years now, started a local support group that has greatly expanded over the years, started multiple online support groups, and now have a huge network of friends all over the world that I feel connected to.

You can read those early LiveJournal entries here. It's interesting and eye-opening to take a look back, to see where all this began and how far we've come. Jump in the time machine with me!

Did you keep a journal or other records of the early days of your illness?

Thursday, May 12, 2022

ME/CFS (and Lyme) Awareness Day & Month: Help Spread the Word!

May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

  • Check out the #MEAction website for their virtual #MillionsMissing2022, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics (like the one above - there are many to choose from), and more. Check out all the options at the link.
  • Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
  • Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:
"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). It's even more important this year, as we've gone from 2 million with ME/CFS in the U.S. to more than 15 million with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 20 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. Crashes are often unpredictable - I am badly crashed today for no discernible reason. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far. "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!
  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. Facts About ME/CFS by Phoenix Rising
  3. The CDC's information on ME/CFS
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

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!

Tuesday, March 29, 2022

New Orthostatic Intolerance (OI) Video

I've been absent/silent lately here! If you follow me on social media, you know I'm still struggling to recover from COVID, which just made all my ME/CFS symptoms much worse (as you'd expect). Last week was particularly bad, and I spent several days in bed.

But, in between, on the days when I felt a little better, I managed to record, edit, and upload a new video: Orthostatic Intolerance in ME/CFS, long COVID, fibro, Lyme & EDS. You can click the link to watch on YouTube or watch below:

This video is based on my most popular blog post in over 16 years of writing this blog! Year after year, this post that I wrote in 2010 shows up as the one with the most visits. 

Orthostatic Intolerance (OI) is a hot topic on my blog for good reason. It is an integral part of ME/CFS (one study showed that over 97% of us have some form of it), and it is treatable! It can take a bit of trial and error (and patience), but treating OI often brings dramatic results, decreasing all symptoms and improving quality of life. It's been life-changing for my sons and I over the years--got my two sons back to school full-time when they were young and allows me to be active without crashing (usually, without COVID messing things up!).

I also wrote a 2-part article on OI for the ProHealth website. All of my articles (and many others) were taken down when they revamped their website last year, but making the video gave me the motivation to scan my articles and get them back online last week. This two-part series covers:

Part 1: Diagnosing Orthostatic Intolerance

Part 2: Treating Orthostatic Intolerance

These articles are especially good for sharing with your doctor(s), as they are brief, cover the most important points, and include scientific references at the end, in case your doctor wants to look up more information.

Check out the video or read the blog post or articles, if you prefer. If you are sick of being sick and struggling through each day, treating OI is one of the simplest and most effective things you can do to improve your life!

And please let me know if you have any questions, in the comments here or in the comments below the video or on Twitter or my Facebook page.

Tuesday, March 15, 2022

TV Tuesday: The Handmaid's Tale

One of the best TV shows we've seen in the past six months--perhaps ever--is the The Handmaid's Tale, adapted from Margaret Atwood's modern classic novel (my review at the link). My husband and I both read the novel, and the adaptation is outstanding. It's an accurate recreation of the world and story Atwood created, only expanded and deepened.

Elisabeth Moss stars as June Osborne, who is now known as Offred (Of-Fred, her commander) in this chilling dystopian world known as Gilead. Commander Fred Waterford, played by Joseph Fiennes, runs the household where Offred resides as handmaid. His wife, Serena Waterford (played by Yvonne Strahovski), desperately wants a baby but, like most women in this world, is infertile and must rely on her handmaid. Once a month, in a bizarre and horrifying Ceremony, Mrs. Waterford holds Offred down while her husband "plants his seed" (as it says in the novel). The rest of the upper-crust household is filled out by a Martha servant (played by Amanda Brugel) whose real name was Rita in the before world, and Nick (played by Max Minghella), who works as a driver, bodyguard, and general handyman at the house. In flashbacks, we see that June and the other handmaids were captured during the revolution and spent time in a training center to learn how to be proper handmaids. Her best friend, Moira (played by Samira Wiley) was at the center with June, and flashbacks show June and Moira enjoying their freedom and friendship in the before world. Their particular Training Center was overseen by "Aunt Lydia," played by Ann Dowd, with a disturbing mix of motherly kindness and terrifying cruelty toward "her girls." When she was captured, June was separated from her husband, Luke (played by O-T Fagbenle), and their daughter, Hannah, and June is desperate to find out where Luke and Hannah are. This tightly-controlled world is ruled by religion and uses scripture to justify every aspect of their warped society, even the mandated monthly rape. June and the other handmaids must strictly comply with the rules of society and their households or risk severe punishment, but inside their brains and their hearts, they still yearn for their real families and old lives.

Any description of this show feels inadequate in fully embodying its compelling and powerful story. While adaptations often fall short of the original material, this stunning show has taken Atwood's clever, imaginative, thoughtful novel and not only brought it to life but filled in the details and richness of the story to bring it to new heights. We are now watching season 4 (a fifth one is planned), and the plot has been delightfully twisty and unpredictable, as June's desire and strength to fight back have grown. Most of all, the acting on this show is absolutely outstanding. Moss is, of course, the undisputed star of the show, showing an incredible range of emotions from grief to love to rage and everything in between, but every single actor here shows a stunning complexity in their roles. Serena used to be a modern career woman and must now be the proper, submissive wife. She and Fred actually helped to create this society that she is now trapped in. Like June, Rita must be a silent and passive servant as the Martha of the house, without her own needs or desires. Even Fred, as the powerful head of household, has some complicated feelings about his wife and his handmaid. Taken as a whole, the incredible talent here, in writing and acting, and the breathtaking sets and cinematography combine to provide a powerful viewing experience that grabs hold of you and won't let go. It's one of the best shows we've ever seen, and we are completely hooked.

The Handmaid's Tale is a Hulu original, so it is available there. Episodes and seasons can also be purchased on Amazon. There are currently four seasons, and a fifth one is planned. Our son's student Hulu account runs out this month, so we are rushing to finish season four, but we might have to subscribe ourselves to see the last one when it is released!

The trailer below for Season 1 provides scenes from the show and a bit of background as to how Gilead came to be: