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.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

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!

 

COVID Hit!

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:

Sunday, March 06, 2022

Weekly Inspiration: Let's Get to Know Each Other!


A year ago, I started my YouTube channel, and since then, I have posted 86 videos, with 16 of them being directly about living with chronic illness (the rest are about books and reading). But, it occurred to me that I only talk about chronic illness and books (and same for other YouTubers in both the chronic illness and book worlds) and that it would be fun to get to know each better!

So, I started my own original tag, All About Me (a YouTube tag video provides questions or another framework for people to share their own answers). The idea is to tell my viewers/readers more about myself, beyond the details of my chronic illness or my reading habits. And I am hoping that others will also do the same, so I can learn more about the YouTubers, bloggers, and other patients whose videos, blogs, and comments I enjoy.

Especially in the chronic illness community, the connections I have made online have greatly enriched my life and provided comfort and support when it feels like no one else "gets it."

At its heart, it comes down to this:

We are more than our illnesses.

We are all complex, interesting people! Here's my All About Me video - click the link to watch it on YouTube or you can watch it below.


And, now it's YOUR turn! I'd love to learn more about you, too! Make your own All About Me video or blog post (the questions are listed in the notes below the video on YouTube) or just share something about yourself in the comments below or on my blog's Facebook page or in the wonderful chronic illness Twitter community (I will post this to my own Twitter feed.)

Let's get to know each other better!

Wednesday, March 02, 2022

It's My 20-Year Illiversary


On March 2, 2002, I woke up feeling awful, exhausted and aching all over, with the worst sore throat I'd ever had, and my life forever split into Before and After. Today, it's been a full 20 years of living in the After and adjusting to life with chronic illness. A lot has happened since then, with lots of ups and downs, though thanks to many effective treatments, I am in much better shape and able to do more now than I was 15-20 years ago. You can read a more story-like summary of our years of illness at the Our Story tab, but here's a detailed summary.


March 2, 2002

Abrupt onset (like 75-80% of patients) of ME/CFS, with flu-like symptoms. Unsure what the initial trigger was, but it could have been my allergy shots, since I had just recently reached the maintenance level. Symptoms came and went in seemingly random patterns (it took a long time to finally see the exertion-crash pattern). 


March 2003

Diagnosis! After a year of getting hundreds of lab tests and seeing dozens of doctors (all of whom said, "I have no idea what's wrong with you"), I went to see our new primary care physician for the first time. She was close to our house, was a woman, and was accepting new patients; otherwise, we chose her somewhat randomly! I showed her my 3-ring binder full of lab results and symptom graphs and pointed out the mysterious ups and downs. 

She said, "I'm pretty sure you have Chronic Fatigue Syndrome. I have a few other patients with it. Would you like to try some treatments?" That sounded like something made-up to me, so I did a little more research, found a CDC website about it, and read a couple of books where I recognized my "mystery illness" for the first time in their pages. 

I went back to her, and she started trying treatments, telling me the first priority was to correct my sleep dysfunction because good quality sleep would improve everything. She was right, of course!

Yes, I know how incredibly lucky I was to find her!!

 

July 2004

While on vacation, my husband and our younger son both got a virus, including a cough that lasted for 6 weeks (with current knowledge, possibly a SARS-type virus?). After that, both of our sons started showing signs of ME/CFS (though we didn't want to believe it) - fatigue, recurring sore throats, and worst of all, crashes after exercise. The older son (who hadn't caught the virus but had been exposed) had more severe symptoms.

 

December 2004

Our older son and I went to western NY state (near my hometown of Rochester) to see Dr. David Bell, a renowned ME/CFS specialist (now retired) and the top pediatric ME/CFS expert in the world at the time. He officially diagnosed our son with ME/CFS (then known often as CFIDS) and confirmed my diagnosis.

Dr. Bell also did an OI standing test of my son in the office. I had read about Orthostatic Intolerance (OI) but didn't think we had it because we never felt dizzy or fainted. Boy, was I wrong! I was stunned by how sick my son got from less than 10 minutes of standing in the doctor's office, as his heart rate went sky-high and his blood pressure plummeted. Dr. Bell explained that I would react the same way but might be too sick to get the two of us home that night!


May 2005

Dr. Bell had introduced us to Dr. Peter Rowe at Johns Hopkins, who specialized in OI, especially in kids with ME/CFS. He couldn't take on any new patients (even back then!) but talked to me by phone and e-mail and spent two hours on the phone with our pediatrician, teaching her all about OI and how to treat it. Our son began taking Florinef (fludrocortisone), which helps the body hold onto more fluids and salt to overcome the low blood volume in ME/CFS. Once he got up to an effective dose (0.2 mg for him at that time), it was like someone had flipped a switch, and he came back to life! By spring 2006, he was back at school full-time, had resumed extracurriculars, like band, and was playing soccer again.

 

2005-2007

Both my son and I continued seeing our primary care doctors, consulting with Dr. Bell and Dr. Rowe, and started seeing Dr. Susan Levine, ME/CFS specialist in NYC. Through all of those doctors, we both corrected sleep dysfunction, treated immune dysfunction and underlying infections, and treated OI (low-dose beta blockers helped a lot). Both of us improved significantly.

 

Spring 2007

Our older son got Lyme disease for the second time. The first time, before ME/CFS, he had been treated and had fully recovered, with no symptoms for over a year, until ME/CFS hit. This time, standard treatment (a month of antibiotics) helped with some new, acute symptoms but his worsened fatigue and other symptoms continued.

That spring, we finally got our younger son officially diagnosed. His symptoms were always milder, and we'd talked to Dr. Bell about him, but since he was only 6 when the boys first got ME/CFS and was still able to function semi-normally, he advised us to wait to diagnose him, saying sometimes younger kids with mild symptoms recover. But by March of 3rd grade, he had missed 35 days of school already, and his principal called us to find out why. With everything she'd learned from Dr. Bell and Dr. Rowe, our own pediatrician ran all the tests to rule out other things and diagnosed him. She also immediately began treating him with Florinef, and he was soon back to living a pretty normal life, other than crashing when exposed to a virus or after extreme exertion. He stayed on Florinef and generally missed 20-30 days of school a year (and had accommodations plans, like his brother), until age 16, when he did indeed recover fully.


August 2008

Sudden onset of knee pain and nausea told me that I, too, had Lyme disease, though my screening tests kept coming back negative. After much arguing (and some tears on my part), my primary care doctor agreed to try a course of doxycycline. My symptoms immediately cleared up, back to my "normal" ME/CFS baseline, and she was convinced! After a few months of treatment, when the symptoms still came back after stopping antibiotics, she said we were beyond her expertise, and we found a Lyme specialist in a neighboring state, who tested me for co-infections (none) and kept treating my Lyme with a varied treatment approach that worked well.


2007-2009

Despite the treatments that had initially helped, our son got gradually worse over a three-year period. He had some odd symptoms his pediatrician couldn't identify, but with the help of a parents' group online, I finally realized his weird rashes were from bartonella, another tick infection. I took him to my Lyme specialist, who discovered he still had Lyme, plus bartonella and babesia, all probably from that initial 2007 bite. More on tick infections, which are common among those with ME/CFS and fibro).


2008-2019

My Lyme symptoms kept returning, and I kept treating for a period of time then stopping, in a never-ending cycle! In 2019, I started seeing the new Lyme specialist our son was seeing (we loved our old one, but this one was closer to home). She suggested some new approaches that helped.


May 2019-present

After finishing college (an arduous process, even with accommodations), our son hit bottom medically. He was very ill, almost homebound and had some new symptoms, including anxiety and severe GI symptoms. He had lost 40 pounds and was vomiting every day and nauseous all the time. That's when he started seeing the new Lyme specialist, along with her partner, a functional medicine specialist. Between the two of them (and lots of testing and new treatments), our son has gradually improved and is doing quite well now. He was able to work 30 hours a week last summer and is now looking for a full-time job, which feels like a miracle!


March 2020-November 2021

Yes, that was the start of the pandemic, but for me, it was also the start of a 22-month-long relapse with no obvious cause. I suspected my Lyme again and went back to the new Lyme specialist, who helped me to once again get my Lyme under control with some new treatments. She also found and treated hypothyroidism. The Lyme flaring up and the worsened immune dysfunction of ME/CFS triggered old viruses to reactivate again, so I went back on antivirals. And, kind of by accident, I discovered that a higher dose of inosine (a super-cheap and over-the-counter immune modulator) on my high-dose weeks also helped. I think all of these factors helped, and by December 2021, I was back to my previous "normal" ME/CFS baseline (keeping up all those treatments).


January 2022-present

Finally feeling pretty good again, I got COVID on January 5 from my father-in-law's nursing home! I am mostly recovered, though energy and stamina are still lower than normal for me. I am slowly getting back (I hope) to my baseline.


Whew, that was supposed to be a quick summary! Nothing with these illnesses is simple, of course. But, that's our story, so far.

How long have you been ill?

Which diagnoses do you have?

What treatments have most helped?

Let me know in the comments below.

Saturday, February 26, 2022

Celebrate Mardi Gras - The Easy Way


It's Mardi Gras weekend! We used to live in New Orleans, so this is a major holiday at out house, as you may have heard in my recent video, Celebrate Everything, Big and Small. We usually celebrate on Saturday and again on Tuesday. Before the pandemic, we had an annual party with a few friends (many of whom also lived in New Orleans when we did) on Saturday. Tonight it will be a smaller Zoom gathering, but I have a pot of jambalaya cooking on the stove, a fresh King Cake from a local bakery on the counter, plus we'll pick up some steamed shrimp and trade some jambalaya for bread pudding with some friends! Tuesday, Mardi Gras day, we will finish off the season with our annual tradition of Popeye's at a friend's house (yes, Popeye's is authentic Louisiana food!).

 
Want to join the fun? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana today...including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.
 
Great Adult Books Set In/About Louisiana (additional titles in my article linked above):
Middle-Grade and Teen/YA Books Set In/About Louisiana:
  • Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
  • The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
  • Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
  • Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows
  • Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
  • NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits, plus some great local music. They usually do a Mardi Gras episode once a season, for extra fun. It's streaming on Paramount Plus (which used to be CBS All Access).
  • Treme - we LOVED this HBO show, which we were somehow able to watch on cable at one point. You can see it now streaming on HBO Max or Hulu.
  • You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
  • Or tune in to watch parades and other scenes in New Orleans streaming live (or if you missed the parades, some great video clips) at www.mardigras.com.
One of the locals in Louisiana
Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Crawfish!

Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally today and webcams where you can vicariously experience Mardi Gras - there are plenty of suggestions in this post that you can still manage to do between now and Tuesday. Or save it for later if you like - we eat this food all year round. 

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best.)

 

Me & my sons, about 10 years ago

 

Wednesday, February 16, 2022

What To Do If You Get COVID


NOTE: I am not a medical expert. In this blog post, my goal is to share with you my own experiences and those of my family, along with research I have done. As always, check with your doctor before trying anything new.

Shortly after writing my recent post on My Experiences with COVID and ME/CFS, I realized I had left out some of the most important information: what I had done (and what treatments are available) to treat COVID and prevent side effects, severe COVID, or a worsening of my ME/CFS. So, that's what this post will cover.

To clarify, this post is relevant for:

  • Anyone who has ME/CFS or long COVID (which is usually ME/CFS)
  • Anyone, even without underlying medical conditions, who gets COVID
  • Anyone who had COVID and is suffering from lingering symptoms, i.e. long COVID

 

With ME/CFS, Prepare Before You Get COVID

If you have ME/CFS, I'm sure you're aware by now that COVID presents some serious possible effects, beyond those in the general population. Our immune systems don't work normally and we don't fight infections the way we should. Also, as anyone with ME/CFS has probably experienced, just being exposed to even a mild infection, like a cold, can often trigger a long-term worsening of all of our usual symptoms (this is because our immune systems are over-reacting, even after the infection clears up). 

COVID, however, is proving to be an even stronger trigger than most infections. In studies, for most common infections that can trigger ME/CFS to start--like mono/glandular fever, parvovirus, Lyme disease, and others--about 10% of those who get infected do not recover but go on to develop ME/CFS. So far, studies show that between 30-50% of those who get COVID do not fully recover but develop lingering symptoms (that are often ME/CFS). Those numbers are stunning! This failure to recover after the infection clears is what is being called "long COVID" in the media.

So, if you already have ME/CFS and then get COVID, your chances of lingering symptoms and/or a long-term worsening of your underlying disease are quite high.

 

Fully vaccinated in June!
 

For that reason, it makes sense to do everything possible to avoid getting COVID (for everyone because even a very healthy person could develop long COVID), and especially if you already have ME/CFS. That includes getting vaccinated, if you and your doctor decide it is safe for you to do so. That is an entirely different topic that I have already covered here on the blog. Refer to My Experiences with COVID and ME/CFS for links to my three posts on deciding whether to get the vaccine and how to prepare first. I did get the first two vaccines but later tests showed that I did not make many antibodies. In addition to considering vaccines, wear masks (experts now recommend medical/surgical masks or KN-95's). And, of course, it is still wise to avoid crowds or any groups without masks.

Double-masked now

If you have ME/CFS and have not gotten COVID yet, congratulations! Do everything you can now to give yourself a better chance of recovering if you do get it. That includes topics covered in my vaccine prep post, like:

In other words, do as much as you can to improve your overall condition, which will improve your life and reduce the chance of a worsening if you get COVID. This post summarizes all of the treatments that have been effective for my sons and I. Many of these treatments in that post and listed above are inexpensive and readily available. Some can even be tried without a doctor, if you don't have a cooperative doctor willing to help you. I am mostly recovered from COVID, after six weeks, except for slightly reduced energy/stamina that are slowly improving. I believe that all of these treatments I did over the previous years to improve my overall condition with ME/CFS helped me to recover more quickly.

 

For Anyone: What To Do If You Get COVID

Whether you have ME/CFS or not, there are some simple things you can do at the first signs of COVID infection to prevent serious complications and/or lingering symptoms (long COVID or a worsening of your ME/CFS). There are also some newer treatments that are available, if you can get access to them. Let's start with those.

Approved, Effective Treatments for COVID

There are now two main types of treatments available for COVID that are meant to be used early in the infection at home and to prevent complications and hospitalization:

  • Oral COVID Antivirals (Paxlovid and molnupiravir - see article)
  • Monoclonal Antibodies

These treatments are intended for use in those at increased risk for severe illness (that would include those with asthma and other lung conditions, older adults, and yes, those with ME/CFS or other immune issues) and are intended to be used to help prevent hospitalizations. 

The problem? Since the holiday surge, they have been mostly unavailable. The two new antivirals were released around Christmas-time and were immediately sold out everywhere--too much demand and not enough initial supply. While monoclonal antibodies are not that new, they have also been unavailable for most patients recently, with limited supplies being used for those already in hospitals. My 96-year-old father-in-law is in a nursing home, and he and I both got COVID the first week of January. We could not get either of these treatments for either of us, not even through the nursing home! Hopefully, those supply issues will be worked out, as more is manufactured and infection rates drop in the spring. My primary care doctor said the next shipments of the antivirals are expected in March.

Alternative Treatments

With the official, approved treatments unavailable, some doctors have turned to alternatives. See the NIH page on COVID antiviral treatments for details and talk to your doctor:

  • Ivermectin - despite all the media controversy, this antiparasitic drug has shown some effectiveness in limited trials in other countries, but there have been no controlled studies proving its effectiveness. Some doctors are prescribing it, but it is also widely unavailable due to increased demand.
  • Fluvoxamine - this SSRI (anti-depressant) showed some effectiveness in limiting serious complications in a study in Brazil. My own doctor prescribed a short course for me for 10 days, when we determined that antivirals and monoclonal antibodies were unavailable.
 

At-Home Treatments

With most cases of COVID, primary symptoms include chest congestion, cough, chest tightness, and sometimes sinus congestion and/or shortness of breath (plus severe fatigue). My son and I both had most of that, except for shortness of breath. You want to prevent those symptoms from becoming severe and doing long-term damage to your lungs and heart. These simple over-the-counter or prescription remedies can help to keep sinuses and lungs clear and ease symptoms:

  • Mucinex 12-hour Maximum Strength (1200 mg extended-release guaifenesin) - thins mucus to keep it from collecting in sinuses and lungs and becoming infected - we use it often for allergies and colds, to prevent bronchitis and sinus infection, but we took it round-the-clock (every 12 hours) while we had COVID. Get the kind I linked to above, with no other ingredients in it.
  • For sinus congestion, phenylephrine (mild decongestant, sold as Sudafed PE or decongestant PE) or pseudoephedrine (strong decongestant, often sold as Sudafed or decongestant - can't be sold online because you must show ID at the drugstore). Pseudoephedrine can have some side effects, as it constricts blood vessels (which can actually help OI) and is stimulating, so save it for severe congestion. I take PE daily for allergies but only take pseudoephedrine when I get a bad headache (that vaso-constriction makes it very effective for headaches).
  • Throat lozenges/cough drops for cough, sore throat, and throat irritation due to cough. I lost my voice during COVID from the constant coughing, and these were very soothing and allowed me to sleep. Be sure they are SUGAR-FREE or they can worsen yeast overgrowth (which many with ME/CFS have) and make you feel worse. I like Hall's Sugar-Free Lemon Honey or Ricola Sugar-Free Lemon Mint herbal drops (my new favorite), but they come in all kinds of flavors.
  • Albuterol inhaler (prescription required) for chest tightness, cough, congestion, or shortness of breath - these require a prescription from your doctor but can provide extra relief (and prevention of serious complications) by dilating (opening up) bronchial pathways. I already had one for bronchitis, and I used it a few times at bedtime so that I could fall asleep without having a coughing fit. If breathing in deeply makes you start coughing, you may need an inhaler.
  • Ibuprofen or acetaminophen for reducing fever. Ibuprofen will also reduce inflammation. Follow dosing guidelines, especially with acetaminophen, which can damage the liver if you use too much.
  • AVOID oral steroids or a steroid inhaler, unless your doctor deems them absolutely necessary and then only use for a short period. Steroids suppress the immune system so are not a good idea when fighting an infection or when you have ME/CFS (in which parts of the immune system are already suppressed). They can be used for short periods to decrease inflammation.
  • Get an inexpensive Pulse Oximeter to monitor your blood oxygen saturation level. If it dips below 90%, you should call your doctor and/or go to the emergency room.
  • Watch for signs of secondary bacterial infections, like bronchitis or sinus infection, and treat with antibiotics before they get serious. Although my primary care doctor said they are not seeing a lot of secondary bacterial infections with COVID generally, those with ME/CFS tend to be more susceptible to bacterial infections (our dysfunctional immune systems usually over-react to viruses but under-react to bacteria). Bacterial infections need immediate treatment with antibiotics to prevent them from developing into something even worse, like pneumonia. In my case, since I have a long history of bacterial bronchitis, my doctor started me on Zithromax (antibiotic that works against bronchitis) the first day I woke up with chest congestion and called her--not for COVID (it's a virus) but because my congestion was very likely to develop into bronchitis, given my history. If you suspect a secondary infection, like bronchitis or sinus infection, call your doctor immediately.
  • Lots and lots of fluids. You can easily get dehydrated when you are sick, which can make everything worse. Plus, lots of fluids--especially hot herbal tea with a touch of honey in it--can soothe a sore throat. My favorites are Celestial Seasonings Zinger herbal teas.
  • LISTEN TO YOUR BODY AND REST!! After 20 years with ME/CFS, I thought I knew fatigue, but wow, COVID knocked me out. I mostly slept and ate for 2-3 weeks (and my healthy son was very sick for a week). I am still, six weeks later, needing more sleep at night than usual, have lower energy, and more post-exertional malaise (PEM) than before COVID. All of this is getting better but slowly. Forget about doing anything at all and rest as much as your body needs.

Those are my tips for easing your symptoms when you have COVID and for preventing serious complications or worsening with COVID, based on our own experiences.

What have been YOUR experiences with COVID? What helped you?

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