The October Slide: ME/CFS and Infectious Triggers

Some with ME/CFS call it The October Slide. Others refer to it as a seasonal downturn. Many patients don't call it anything but wonder why on earth they feel so awful during fall and winter. My son and I used to experience this, too, every year, spending endless weeks--or months--with both of us crashed and unable to get up off the couches and recliners. Although this is now rare for us, I re-experienced this phenomenon this past week, when I abruptly went into a severe relapse that kept me home and lying down for a week (I'm not back to my normal baseline yet but am starting to feel better).

The good news is that there are medical, scientific reasons for this annual fall/winter downturn, and it can be treated and eliminated. As I said, my son and I used to spend much of each fall and winter badly crashed, and it is now a rare occurrence. We also used to both get bacterial bronchitis 4-5 times a year (often in fall and winter) that knocked us out completely and required antibiotics (sometimes multiple rounds). These days, we may each get bronchitis once every two years or so, and we usually catch it early, treat it, and only spend a few days crashed from it. You can say good-bye to the October Slide and the fall/winter crashes, too. Here's how:

What's Going On

ME/CFS is, at its heart, an immune disorder. It doesn't fall neatly into the categories of immune-deficient or autoimmune, though, as most immune disorders do. Instead, we have characteristics of each, with parts of our immune systems over-reactive and other parts under-active. This blog post, Immune System Abnormalities in ME/CFS, explains in simple terms what's going on behind the scenes that contributes directly to our seasonal downturn.

The common worsening and frequent crashes most of us experience in fall and winter are mainly due to exposure to infectious agents. While, as explained in the post linked above, our immune dysfunction means that we rarely "catch" colds, flus, and other viruses, just being exposed to them can cause our already-overactive immune system to go further into overdrive. The crash symptoms we experience in fall and winter are usually symptoms of our immune systems getting seriously over-stimulated: things like flu-like aches, sore throat, swollen glands, worse fatigue/exhaustion/lack of energy, and sometimes a fever or feeling feverish even with a normal temperature. Alternatively, when someone catches a cold or flu, they will get the classic symptoms of it, which might include severe congestion, cough, high fever, etc. In the example of my bad crash this past week, which was almost definitely from exposure to some infectious agent, for a couple of days I had a bit of a runny nose, a tiny bit of mucus in my chest in the morning (again, I am prone to bronchitis), and maybe a very mild fever on a couple of days. But my main symptoms have been severe head-to-toe achiness, complete lack of energy and extreme exhaustion, and a mild sore throat--all signs of immune activation.

What was I exposed to last week? I have no idea! Both of my sons were out of town and returned last Sunday, so they had certainly been exposed to stuff. I was in the grocery store the week before (with a mask, of course). That's the point about this time of year: there are more colds, flus, and other infections floating around, with more people indoors where the germs are easier to get exposed to. I'm guessing it was a simple cold germ since flu season isn't really here yet, though of course in 2020, we are all concerned about coronavirus, too. There are dozens of viruses floating around in the air at any time.

 

What Can You Do?

There are two important steps to stop this annual seasonal downturn: 

1. Improve Your Immune Function
2. Treat When you've Been Exposed to an Infectious Agent

Improving immune function in ME/CFS is tricky because it's a mixed bag, so the treatments used for immune deficiency or for autoimmune diseases won't work for us. Instead, we need to focus on what's known as immune modulators, which will help to normalize the immune system (rather than boosting it or suppressing it). We have found three treatments which help to do this: low-dose naltrexone, inosine, and glutathione. These are all inexpensive, and the last two don't even require a doctor (though it's always good to discuss any new treatments with your doctor(s)).

This blog post, Treating Immune System Dysfunction in ME/CFS, covers all three of those treatments and provides more detail on the immune dysfunction that is common in ME/CFS.

Using those three treatments put a stop to the annual fall/winter crashes for both my son and I and to our frequent bouts of bronchitis (which occur because our immune systems under-react to bacterial infections). We both no longer experience a seasonal downturn nor the severe and long-lasting crashes that come from exposure to infectious agents in fall and winter. 

But, of course, I did crash from a likely infectious trigger last week, so it can still happen on rare occasions; we just don't spend all winter battling it anymore. And when it does happen, it only takes a day or so for me to recognize that I was probably exposed to some infection (because of the severity of the crash; with these and other treatments, I no longer crash badly from over-exertion). When that happens, I listen to my body and rest as much as I need to (I have been pretty much couch-bound the past week), but I also increase my dose of herbal antivirals/antibacterials. 

My son and I both take a range of herbal antivirals/antibacterials/antifiungals every day in our daily meds boxes, including Emulsified Oil of Oregano (ADP), Olive Leaf Extract, Grapefruit Seed Extract, and Monolaurin. But on weeks like this, when I've been exposed to something that's made me crash (or if I know someone near me has a cold, flu, etc.), then I add extras. This past week, I more than doubled my dose of Olive Leaf Extract (from two every other day to four every day), and I have been making my son and husband take it, too! Yes, these work for healthy people without ME/CFS like my husband, too. After a week, my mild viral symptoms are long gone, I am starting to feel better, my husband hasn't caught anything, and my son hasn't crashed.

All of this is further explained in the post, Treating Virally-Induced Crashes in ME/CFS. 

 

You do NOT have to accept and live with the annual worsening and extra crashes every fall and winter! These treatments will not only help to prevent that seasonal slide but will also help to improve all of your ME/CFS symptoms, including exercise intolerance. Since immune dysfunction is at the heart of our disease, improving and normalizing your immune system will help to make everything better. It's not a cure--that doesn't exist yet--but these are improvements that can vastly improve your ability to function and your quality of life.

Have a wonderful fall and winter!

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

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Movie Monday: The Vast of Night

After a long sick week for me, I was in the mood for a movie last night, so my husband and I watched The Vast of Night, a new original movie from Amazon. This 1950's style sci fi drama is original, suspenseful, and a lot of fun.

The film has a very Twilight Zone feel to it.  In fact, the entire movie is framed as if it were an episode of a black-and-white TV show called Paradox Theater, which is clearly a send-up of the classic twisty show. Then, the audience is brought into the show (and the scene turns to real-life color), and the story unfolds in the small town of Cayuga, New Mexico. Sixteen-year-old Fay, played by Sierra McCormick, is a cute 50's teen in cat's eye glasses, a full skirt, and saddle shoes who talks a mile a minute. She's excited to show Everett, a slightly older guy played by Jake Horowitz, her brand-new tape recorder that she bought based on his advice. As they walk from the high school, where the rest of the town is gathering for a basketball game, Everett, who works as a DJ at the radio station, shows Fay how to use the device by encouraging her to talk about the science articles she's read recently. Then, Fay goes to work as the town's evening switchboard operator, and Everett heads to the tiny radio station to broadcast his nightly show. Fay starts to notice some odd happenings: the radio show cutting out, phone calls getting dropped for no reason, and an odd noise she's never heard before on one line. She calls Everett, who shares her love of science, and plays the strange sound for him. Fay runs over to the radio station (she does a lot of running in this movie!) and together, the two of them catch the strange sound on Everett's recording equipment, play it on air, take a call from a mysterious caller named Billy, and rush to visit an elderly woman named Mabel. Both Billy and Mabel tell strange stories about this noise, which they've both heard before, and Fay and Everett run around the empty town, trying to solve the mystery.

This movie is so much fun! Any Twilight Zone fan (like me) will feel right at home, and the story is filled with tension and suspense. It's not super fast-paced at first, but it feels just right for the 50's setting. The two main actors (who are on-screen most of the time) are both excellent in their roles, completely inhabiting their young, curious characters. A lot has been said by professional film critics about the production values of this movie and the unique ways in which it was shot. I'm no expert, so I can't comment on that, but as a viewer, I was fully immersed in the story and very much enjoyed it. And did I mention it's funny, too? To top it off, the ending felt perfect to me.

The Vast of Night is an Amazon original movie, so it is available exclusively on Amazon Prime.

TV Tuesday: High Fidelity

My "alone time" for TV watching is pretty minimal these days, with a full house, but I like to find a good half-hour show that I can squeeze into my rare solitude for a little downtime! My latest pick was High Fidelity, a Hulu show based on the 2000 movie starring John Cusack (and on the original Nick Hornsby novel), with a modern twist.

In a gender switch, Zoe Kravitz (daughter of musician Lenny Kravitza and actress Lisa Bonet) stars as Rob, the owner of a record store who loves to make Top 5 lists. Here, the record store is located in so-cool and of-the-moment Brooklyn. Rob's best friends and record store colleagues are Simon (played by David H. Holmes), a gay, self-conscious guy, and Cherise (played by Da'Vine Joy Randolph), an exuberant, sharp-talking woman who dreams of being the lead singer in a band. As in the movie (and novel), the show is structured around Rob recounting her Top 5 Heartbreaks of All Time, as she tries to figure out why none of her relationships work and why she is still alone in her 30's. Mac, played by Kingsley Ben-Adir, is the handsome British guy who was Rob's latest heartbreak. He's just moved back from London, so the love and the break-up are suddenly front and center for Rob again. Meanwhile, Clyde, played by Jake Lacy, is a new man in Rob's life (sort of). The 10 episodes not only go through Rob's heartbreak list but also delve into the lives of her friends and lovers (past and present). Through it all, music is a constant thread, with great, unusual background music playing in the record store and the Top 5 lists of the three record store employees.

Although this show is centered on heartbreak, it's a whole lot of fun. The music provides a great backdrop to the story, and there is plenty of humor as well. Kravitz and her co-stars do a wonderful job of inhabiting their quirky characters so that you come to care for them and root for them, as they all grow and evolve. Rob is kind of a mess here, but as she works through her past heartbreaks, I wanted her to come out of it healthier and happier. I loved the music and the Top 5 lists and the witty banter among the friends. The writing is excellent! It's a great show for some fun and escape, which was just what I was looking for.

High Fidelity is a Hulu original, so it is available only on Hulu.

 

News From Our House - Oct. 1, 2020 - Taking Time Off

Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.

Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.

Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach

 

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!

 

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!

 

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach

 

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).

What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.

Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.

We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.

 

 

 

How are YOU doing this week?

And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

Movie Monday: Enola Holmes

I've been waiting for the new Netflix movie, Enola Holmes, based on a series of YA novels about Sherlock Holmes' sister, ever since I heard that Millie Bobby Brown, of Stranger Things fame, stars in it. So, we watched it this weekend, soon after its release, and enjoyed this light, fun story.

Enola Holmes, played by Brown, is the much younger sister of Sherlock (played by Henry Cavill) and Mycroft (played by Sam Clafin), but she barely knows her brothers, who left home when she was young. Now sixteen years old, she has grown up under the tutelage of her mother, Eudora, played by Helena Bonham Carter, a nontraditional woman for her time. Eudora has not only taught Enola history, science, math, and literature but has also taught her daughter archery, ciphers, self-independence, and even how to fight. The two women are very close, so Enola is devastated to wake up one morning to find that her mother is gone. Sherlock and Mycroft come back home to take over, and older brother Mycroft takes it upon himself to be Enola's guardian, while he puts Sherlock in charge of finding their mother. Mycroft believes that a young woman like Enola should be in finishing school to become a proper lady, but Enola has other ideas. She dresses up like a boy and makes her escape from the family estate to London, where she is sure her mother has gone. Along the way, she meets a boy about her age named Lord Tewkesbury, played by Louis Partridge, who is also running away from his family. The two join forces for a bit, and Enola--skilled in many ways but unfamiliar with the outside world--takes on London in order to track down her mother. Along the way, she encounters bombs, gunpowder, a murderer, and many other hazards.

This movie is just plain fun! The tone is light and playful, with plenty of humor. Of course, Brown is outstanding in her role as Enola, and the supporting cast is very good, too. Enola's adventures take her on a twisty and unpredictable path full of danger, with non-stop action on screen, though the film also takes the time to build her character and give her depth. She's a delightful, engaging girl, and we were rooting for her from beginning to end! This movie has it all: mystery, adventure, action, humor, and even a touch of romance. It's a great movie for all ages and will give young girls a worthy heroine.

Enola Holmes is a Netflix original movie, perhaps the first of a series?, so it is available exclusively on Netflix. I haven't yet read the books it is adapted from, but I have heard they are wonderful.

[NOTE: I did, however, read the first book in another young female Holmes series, A Study in Charlotte, featuring Charlotte Holmes, a modern teen girl descended from Sherlock who goes to boarding school in Connecticut and meets Jamie Watson, descendant of that Watson. I enjoyed it very much on audio, and you can read my full review (no spoilers) and listen to a sample of the audio at that link.]

Weekly Inspiraton: Outdoor Living

One thing in my life that inspires (and calms) me more than anything else is being outdoors. I've written about this many times here on my blog and elsewhere, and you can read my tips in the post, Camping and Enjoying the Outdoors with ME/CFS. Check out this post which includes an article I wrote for ProHealth website on The Restorative Power of Nature, which was also edited and included in my book (notice the blue sky photo I choose for my book cover!). As that article explains, research shows that spending time outdoors has amazing positive effects on both physical and mental health. And for those of you who can't manage an outing to a park or are even bedridden, there's good news! Even just looking out a window or looking at photos of nature can have these same positive effects. I will share some of my own photos from this week so that you can enjoy and benefit from our outdoor adventures, too.

This past week, my husband and I were finally able to get out for a very quick camping trip with our pop-up camper, and it was so incredibly peaceful and calming for me! Besides my downturn these past six months, we are also caring for my husband's 95-year-old father. His cognitive function worsened severely with the isolation of lockdown, to the point where my husband was having to visit him twice a day, just to make sure he got up for his meals at least. So, with all that plus the pandemic, we have missed our usual relaxing camping trips this year. So, this week, we went to a local state park, Elk Neck State Park in Maryland, less than an hour away, and attempted a little mid-week day-and-a-half getaway!

Water view from our campsite

It was not entirely successful, since my father-in-law called the first morning with a bad toothaches, so we spent some time on the phone to him, the dentist, and our sons. But it was still incredibly rejuvenating just to be outdoors for a little bit and away from to-do lists, laptops, internet, etc. The campground was mostly empty, with just a few waterfront sites occupied, and we had our own site with a gorgeous water view.

A mostly empty campground meant plenty of quiet!

We fell asleep to the sounds of crickets and water lapping against the rocks near our campsite - ahhh, complete tranquility! And what a view to wake up to. This is one thing I love about our pop-up camper--the way you can just unzip the canvas and be surrounded by the outdoors even while you're inside.

Sleeping surrounded by nature

 

I felt well enough (!) to manage an easy walk to the beach, on a trail that led right from our campsite. This is one of our favorite things about this park: these secluded beaches, accessible only from the campground loops. We enjoyed a quiet stroll along the beach, watching the geese and cormorants (and one bald eagle!), listening to the gentle waves rolling in and enjoying the sunshine. This is the Elk River which empties into the Chesapeake Bay just past the park, which is on a peninsula. 

Peace and solitude on the beach

 

I wasn't up to it this time, but there is also a lovely trail out to the point of the peninsula, with a lighthouse and amazing views out into the Chesapeake. The photo is from a previous trip.

Us at the Elk Neck Lighthouse - Sept. 2018

Mostly, though, we just relaxed and enjoyed the quiet peacefulness. I did a lot of reading!

Relaxing and reading outdoors

 

At night, we enjoyed a campfire, complete with a foil dinner cooked on the fire and--of course--s'mores for dessert.

Enjoying an evening campfire

 

I ended our trip with my usual morning yoga stretches with this amazing view.

Yoga and water views!

 

We had to rush back home so my husband could take his dad to the dentist, but that inspiring calm and quiet stayed with me.

Try it yourself! Open a window and listen to the birds (that's what I'm doing right now). Lie outdoors in a lounge chair and look up at the sky and clouds. Really focus on your senses and the natural world around you to reap the benefits and feel calmer and more peaceful.

Have a lovely day ... and get outside!

Weekly Inspiration: Chronic Illness Bloggers

Every once in a while, I like to share inspiration from other chronic illness bloggers around the world, and I am due for one of these round-ups. Anytime you are looking for your own inspiration, visit the Chronic Illness Bloggers page on Facebook and scroll through the latest posts from bloggers (including me).

Here are a few inspiring posts I've read this week and found helpful:

 

Amber of The World Sees Normal blog wrote a very thoughtful and supportive post this week: It's OK to Not Always Be OK. She writes in a very honest and straightforward way and addresses feelings we all have at one time or another, regardless of which diagnoses we are dealing with. Her post really spoke to me.

 

The Dreaming Panda: My Neuroimmune Journey also wrote a new post this week--Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick. It's a very powerful and honest post, where she shares her journey to improve her mental well-being while fighting multiple illnesses.She also talks about a concept that I wrote about in my book--balancing acceptance and hope--and her own personal struggles with that.

 

Shelley of the Chronic Mom Blog has a guest post this week from Megan Clark Neville, a Texas librarian who has been chronically ill for the past 16 years. Megan's post, When You Have a Chronic Illness, You Are Enough, shares some of the same thoughtful, supportive tone and message as the first two blog posts listed here. She talks about feelings of shame, treating ourselves with kindness, and focusing on being rather than on doing. 

 

And for something a little different, check out Through the Fibro Fog blog by Claire, who writes about The Fear of Slowly Coming Out of Lockdown with Chronic Illness, an excellent and thoughtful post about our current situation, as it applies to those of us with chronic illness. She talks about her experiences throughout the pandemic, from the first inklings of what was happening to today, from the perspective of chronic illness. 

 

I hope you found these blog posts as interesting, inspiring, and relevant as I did--and maybe discovered some new blogs to follow!

Let me know your thoughts. Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

News from Our House - Sept 18, 2020 - Finally, a Good Day!

I haven't written an update post lately because I've been feeling seriously awful a lot of the time (and mildly awful the rest of the time), but today has been a good day--the first really good day in a long time. Here's the scoop from our house lately:

 

Up, Down, and All Around

My rollercoaster year continues! The past two weeks have been especially rough for me, with multiple days each week where I am completely crashed--what I call "flat days" (because I can barely get up off the couch). Even a single day this bad had become very rare for me in recent years, so this trend has been especially challenging for me. Even worse, it often feels like the worst days come with no rhyme or reason. I had gotten to a nice, steady dosing of a half pill a day with my antivirals and felt like I was doing better, so this was a nasty surprise.

I was flat on my back and achy all over this Wednesday, so I decided to skip my half-pill antiviral dose--maybe I needed a break because I was Herxing? But Thursday, I woke (barely, an hour later than usual) feeling even worse, with horrible aches and exhaustion all day. OK, that didn't work. So, yesterday, I went the other way and upped the dose to two half-pills a day (for a total of 1 pill a day, which is the intended dose). And guess what? I still slept an hour later this morning, but I woke up feeling good. In fact, I felt great most of today! Shocked but happy, I got on with my day, which included an out-of-state doctor's appointment with my son. 

Late summer bounty from the farmer's market

 

That trip--an hour's drive each way plus about two hours in the office sitting up in chairs--usually wipes me out, but I actually felt good throughout it today, even well enough for a stop at a lovely Amish Farmer's Market on the way home, for some last-of-summer fruits and veggies (and some goodies, too)! We got home about 2:30 pm (usually nap time for me) for our daily smoothie. Granted, when I finally did take my nap at 3:30, I was ready for it, but to feel that good for so long today after the week I've had felt like nothing short of a miracle!

I'm a bit achy now at 6 pm, so we'll see what tomorrow brings ...

 

My Son's Improvements

I am way overdue for a detailed update on my son's multiple health problems, but you can read about how he hit bottom last year in New Diagnoses and New Treatments - ME/CFS and Lyme. 

Fast-forward about 18 months, and I took a look at how he's doing compared to that time last year, in preparation for today's two appointments. We track how we feel each day on a 1 to 5 scale (1 = great and 5 = awful; you can see details of how we track here), and I graphed his monthly averages. In 2019, his "how he felt" number was dragging around 3 or even lower some months. That's not so good. So far, in 2020, he's been consistently up around 2.5 (some months even better), so that's clear improvement! 

To look at the data another way (sorry--used to be an engineer!), I also track and graph % of time crashed. On our scale "crashed" means days when he's only at a 4 or 5--those flat days when you can barely get up, let alone get anything done. In 2019, his % of time crashed each month ranged from about 5% to 50%, meaning that some months, he was incapacitated half the time. That's rough. So far in 2020, his % crashed has ranged from 0% to about 17%, a huge improvement! He's had two months this year without a single crash day. In addition, he's noticed that he's able to be much more active--without crashing--now, driving 3 hours back and forth to his girlfriend every other weekend, working one night a week, and seeing friends more. I do also track exertion level, but I haven't calculated averages or made graphs yet!

So, while it can often feel, day to day, like things are the same, he has definitely shown some great progress in the past year and a half, and his medical team is committed to continuing that trend.

 

Don't Miss:

Some good information in the larger ME/CFS world last week. Check these out:

• Heart Rate Monitoring and Physical Therapy for ME/CFS - Physios for ME made a 2-video podcast about how to use heart rate monitoring and safely do physical therapy with ME/CFS patients. I appeared in both videos, and there is some excellent information here, for both physical therapists/physios and for patients, plus additional information from my blog posts and articles to help ME/CFS patients to better manage their conditions and prevent post-exertional crashes.
• New Website from U.S. ME/CFS Clinician Coalition - This group of top U.S. ME/CFS experts who have worked together for many years to stay up-to-date and offer their patients the best treatments formed this ME/CFS Clinician Coalition in 2018 and put out a paper on Diagnosing and Treating ME/CFS, but this new website goes a big step further in providing doctors all over the world with a one-stop website with loads of great information on how to diagnose and treat ME/CFS, including links to additional information on diagnostic criteria, other treatment info, OI, EDS, MCAS, and even disability and school accommodations. It's an outstanding resource. Now, it's time for us to help get the word out! Share this excellent website with your doctors.

 

 What I'm Reading and Watching

As always, I ended my annual Big Book Summer Challenge on Labor Day (the first Monday of September). It was a record-breaking year for the challenge, with more than double the number of participants, and I enjoyed reading and listening to lots of Big Books (400 or more pages) this summer. You can read all about my books and the challenge itself here. If you missed out this summer, join the fun next May!

 

You might think I am sad that Big Book Summer is over, but September marks the start of another favorite reading challenge for me, the Readers Imbibing Peril (RIP) Challenge! It involves reading books in September and October with darker themes, like thrillers, mysteries, suspense, supernatural, and more (doesn't have to be horror or ghost stories, just anything darker). You can read about it--it's super-easy to join the fun this year--and see some of the books I'm choosing from at that link. I love everything about fall: the cooler weather, lower humidity, wearing jeans and sweatshirts, campfires, and ... the books!

We recently finished a new favorite TV show, Russian Doll. I've been hearing rave reviews of it since its release last year, and we finally got around to trying it. We both loved it and ended up binging its short season in a week! It's about a woman named Nadia who keeps reliving her birthday over and over, dying in different ways each time and restarting back at her birthday party. It's twisty, fun, dark, and hilarious with a great cast. Check out my full review and the awesome trailer at the link.

How are YOU doing this week?

And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

TV Tuesday: Russian Doll

I had planned to review a different TV show today, but we just finished Netflix's Russian Doll on Sunday, and I couldn't wait to tell you all about this outstanding, twisty show with a unique premise.

It's Nadia's birthday, and her best friend, Maxine (played by Greta Lee), is hosting a blow-out birthday party for her in her funky New York apartment. Nadia, played by Natasha Lyonne who played Nicky on Orange Is the New Black, drinks a lot, chain smokes, and takes home a stranger. Later in the night, though, out on the streets again, Nadia gets hit by a car and dies. The next moment, she is alive again, in her friend's wildly-lit bathroom, looking in the mirror. Confused, she walks out to find that she is back where she was hours ago, at the beginning of the party, with Maxine greeting her for the first time again. She keeps reliving that same birthday night (slightly different each time, since she is now freaking out), and she keeps dying in different ways and restarting back in the bathroom again. She is going crazy trying to figure out what's going on, why, and how to stop this unending loop. Then, in one of her re-lifes (when she actually makes it to the next morning), she meets someone else who is going through the same thing, a handsome guy named Alan, played by Charlie Barnett. Nadia and Alan team up to try to get to the bottom of this crazy cycle they are both stuck in.

Ever since its release last year, I've been hearing people rave about Russian Doll, so it's been on our (very long) list of shows to try. Why didn't anyone tell me it was about someone trapped in a time loop?? I love this kind of brain-twisting plot! Seriously, this is my favorite kind of fiction: time travel, time jumping, time loops, you name it, I'm there for it. Besides that, though, even if you're not into time-twisting like me, the show is just as good as everyone's been saying. It's smart, clever, intriguing, dark, and very funny. Natasha is outstanding in her bizarre lead role, and the supporting cast is a lot of fun, too. Each episode has new developments, as Nadia and Alan investigate this weird phenomenon and come up with new theories. We absolutely loved this show and blew through its eight short episodes in a week (which is rare for us--we're not usually bingers). And, though the ending was just about perfect, Russian Doll has just announced that it will be back for a second season. We can't wait to see what's in store next!

NOTE: As you will see in the trailer, there is ample foul language and some sexual content, just in case that's not your thing.

Russian Doll is a Netflix original program, so it is available exclusively on Netflix. Season one is available now and is just eight 30-minute episodes, so it is perfect for a quick binge!

Check out this awesome trailer that both shows the basic plot of the show and its dark but hilarious tone:

Heart Rate Monitoring for ME/CFS & Physical Therapy

My trusty heart rate monitor - 2015 and still working great!

I recently appeared as a guest on a two-part podcast hosted by Physios for ME (physio is the British term for a physical therapist), all about using a heart rate monitor for ME/CFS. The videos are perfect for both ME/CFS patients and for physical therapists who work with us. Before I include the two videos, first a bit of background to help you understand what this is all about.

I wrote an article for the ProHealth website, Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS, that provides all the basics about why and how a heart rate monitor can help those of us with ME/CFS better manage our illness and prevent crashes caused by over-exertion. It explains about PEM (exercise intolerance), what causes it, how to estimate your heart rate limit, and even tips on choosing a heart rate monitor. The article is short and easy to read, written specifically for patients, so start there to understand what this topic is all about.

Then, watch the first video, Heart Rate Monitoring for Post-Viral Fatigue Syndrome and ME, Part 1:



I have a brief part in this podcast, but mostly, I listened. They have three UK physios/physical therapists who work with patients with ME/CFS and are a part of the Physios for ME group. In this first part, they provide some of the technical details, with fascinating information from research into exercise intolerance in ME/CFS. This video also features a guest speaker, Todd Davenport of Workwell Foundation (part of the University of the Pacific). His organization has been researching exercise intolerance in ME/CFS for more than 20 years, and I have been following their fascinating studies since I first got sick in 2002. After all, PEM or exercise intolerance is the key defining characteristic of ME/CFS, and one of the biggest mysteries (beside immune dysfunction) at the heart of our disease. Todd's talk in this video provides some great information for both patients and PTs.

Next, Part 2 of the podcast is about Heart Rate Monitoring - Experiences of People with ME, and it include brief talks from four patients--including me--about our own personal experiences using a heart rate monitor. Some parts of this video have lower sound quality (mine is good), but it is well-worth a listen/watch to hear the wide variety of experiences:



Both my article linked above and the two videos reference orthostatic intolerance (OI), which is intrinsically linked with heart rate monitoring in ME/CFS. To learn more about OI, see my blog post Orthostatic Intolerance in ME/CFS.

Finally, the group that hosted these podcasts, Physios for ME, is focused on using physical therapy to help/treat ME patients. In the UK (and sometimes elsewhere), patients are often sent to PT for "exercise treatment" aka Graded Exercise Therapy (GET), which can, of course, be very harmful for ME/CFS patients. Physios for ME is doing something that is very much-needed--teaching physical therapists/physios how to work with ME patients safely, without causing post-exertional crashes.

If you are seeing a physical therapist for that reason OR because you have an injury or need to rehab after surgery (or if you are a physical therapist), I created a document, Guidelines for Physical Therapy for Patients with ME/CFS, when I needed PT. I shared it with multiple physical therapists during two different sets of PT for different injuries, and it was always well-received and helpful. It covers heart rate monitoring but also includes many other important facts and tips for PTs/physios working with ME/CFS patients. I also wrote this short article for ProHealth, The Dos and Don'ts of Physical Therapy When You Have ME/CFS, which links to the guidelines but also includes more information--for patients and PTs--including links to a specialized form of manual PT that has been found effective in treating ME/CFS, as well as EDS and fibromyalgia. This is not "exercise yourself well" PT, but a form of PT that begins with the patient lying down and entirely passive while the PT uses a technique called nerve-gliding to increase mobility and decrease pain. It's explained in that article.

So, I think that covers everything! I hope you enjoy the two videos and find them informative, along with the extra information I've provided here.

If you have any questions or want to share your own experiences with heart rate monitoring, please leave a comment. You can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

Weekly Inspiration: Brené Brown and The Power of Vulnerability

I am quite possibly the last person on earth to finally discover Brené Brown, but just in case I'm not, I wanted to share her wonderful (and famous) TED Talk on vulnerability.

I saw Brené Brown on the Today show this week. They have been doing a series on inspiration (much like my weekly posts), featuring different experts, to help people deal with all that's going on in the world this year, and she was the featured guest one day. Of course, I have heard of her and know some people (including Oprah) love her, but I had no idea what her message was or what she was all about.

So, this morning, I joined the bandwagon and watched her TED talk that has almost 50 million views, The Power of Vulnerability. This is the video that kicked off her inspirational/self-help empire:

I can see why she's so popular! Besides being warm, engaging, and funny, her message really hit home for me. She talks about connections/relationships and how they give purpose and meaning to our lives--I agree completely!

She also talks about her research into what makes people feel worthy. Her results showed that people who feel worthy have:

• Courage
• Compassion
• Authenticity
• Vulnerability 

... which led her to research vulnerability, which also means uncertainty. She showcases her own vulnerability by admitting that she has issues with control (which is the opposite of uncertainty). Her thoughts on the concept that life is messy were hilarious! I could definitely relate. Though chronic illness has forced me to give up some control, it's still a constant struggle for me.

So, check out her short video and see for yourself! Her ending message about what leads to vulnerability (and hence, to worthiness and happiness) is compassionate, kind, and supportive. It's a message we could all benefit from. I'm glad I finally found out who Brené Brown is and what she's all about. I look forward to hearing more from her!

Weekly Inspiration: Laugh! Take 2

As I explained in this week's News from Our House post, I have been crashed a lot lately and spending far more time on the couch than usual.  I felt bad on Friday so did the right thing and tried to take it easy, but I woke up Saturday feeling even worse. Stuck on the couch again and feeling pretty depressed, I was scrolling through Facebook and found a video a friend posted. That started me down a rabbit-hole that kept me laughing most of the day!

My first Laugh! post listed all the positive emotional and physical effects of laughter--it's been studied and scientifically proven! It's even good for the immune system, which is great for us! That post also included a great (and funny) TED Talk about the benefits of laughter, so check that out. And now, onto some new laughs for today!

 

The Holderness Family

First up, the videos that kept me laughing ALL DAY yesterday! My friend shared one on Facebook, I laughed like crazy, my husband came over to see what was so funny, and we were both obsessed all day (and we haven't seen them all yet!). This is the Holderness Family's channel on Youtube. The parents have been making videos since the start of the pandemic, and they are hilarious! Here's one of our favorites of their regular vlogs, Marriage in Quarantine:

At bedtime, my husband was still quoting that opening scene with her in the closet! We could both relate to everything in here!

They also have a bunch of song parodies. The husband is the musician in the family, and his ability to mimic so many different singers and the cleverness of their replacement lyrics kept us laughing!

Here's one of over 50 song parody videos to make you laugh--they are all great, but we especially liked this one based on TV theme songs--setting "Costco" to the theme of "Love Boat" ("soon we'll be making another run...") was pure brilliance:

Gospel Song About the Fridge

Another YouTube gem (that I first saw on the Today Show) brought a huge smile to my face! This woman sings for her church choir and has a beautiful voice, here put to good use singing her original song "At the Fridge Again":

<iframe width="560" height="315" src="https://www.youtube.com/embed/0oeWqoDlDY4" frameborder="0" allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe>

Watch out: this one will stick in your head all day!

Movies

We've been watching mostly thrillers lately, but when we need a good laugh, our family goes back to some 80's and 90's movies that are guaranteed to keep us laughing! Our favorite funny movies include:

Planes, Trains, and Automobiles - a classic! John Candy and Steve Martin are hilarious in this movie about two men who meet while trying to get home for Thanksgiving. The challenges they face will make you glad you can't travel right now, and their acting and dialogue will keep you laughing from beginning to end. This one is exceptionally quotable and often quoted in our house ("it may not look like much, but it gets me where I want to go!"). Even though we can now pretty much recite every line, this movie still makes us laugh more than any other.

 

My Cousin Vinny - This 1992 gem is another one with wall-to-wall laughs. If you've wondered what happened to Ralph Macchio after Karate Kid, here you go! He plays a a young man on a road trip with a friend. They get stopped by local police in a small Southern town, mistaken for the robbers who hit the same gas station where they stopped. Ralph's character calls his cousin Vinny Gambini, who just passed the bar exam, to defend them. Vinny comes down from New Jersey with his girlfriend Mona Lisa Vito, played amazingly by Marissa Tomei (nominated for best supporting actress for her role here). What follows is hilarious as Italian New Jersian Vinny, in the ultimate "fish out of water" story, goes up against Southern good ol' boy Judge Haller, played by Fred Gwynne, best known as Herman Munster. The actors are all outstanding, and the writing is sharp and funny. Guaranteed laughs!

The Birdcage - Robin Williams and Nathan Lane as a gay couple running a drag show in Miami Beach? Say no more. These two actors are absolutely hilarious in this movie based on the famous stage play, La Cage Aux Follies. The laughs grow as Armand's (Robin's) son asks his dad to pretend to be straight to meet his fiance's right-wing parents, played by Gene Hackman and Dianne Wiest. Chaos ensues when Nathan Lane's character decides to attend the dinner in drag and pretend to be Armand's wife. Hank Azaria as their gay houseboy, Agador, steals the show during this crazy dinner party. Even after multiple viewings, this show keeps us in stitches!

Well, I am feeling better today--I guess all that laughter helped yesterday! We are going to visit my father-in-law, so I'll have to cap off the laughs there.

 

Please leave a comment (or a link) to tell me what makes YOU laugh!

You can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

News From Our House - Sept. 3, 2020 - Riding the Rollercoaster

Just a quick update today before I need to get out of the recliner and make dinner.

 

Riding the Chronic Illness Rollercoaster

That's the title of the first chapter of my book, Finding a New Normal, and I have been living on that rollercoaster lately: one bad day, one good day, one bad day, one good day, repeat. I can't seem to ever string two good days together. I've written several times here about my downturn this spring and summer (see Crashes, Infections, and Treatments ... Oh, My!) and my discovering that a reactivation of HHV-6 is the most likely culprit. I have been on antivirals since early June now but am still struggling with the dosing. Too little, and I feel worse; too much, and I feel worse. It's a difficult balancing act between treating the infection and Herxing. I still can't tolerate a full dose (one pill a day) so am going back and forth between a half pill a day and one pill a day. Maybe I need to try to just stabilize at a half pill a day again.

I actually felt much, much better for a few weeks in August, so perhaps it is just the dosing that I need to get to a steady level again. My biggest issue is that my stamina is so much lower than usual. Normally, with all of the treatments that work well for me, I can be pretty active and function pretty well and rarely crash from over-exertion. Now, though, activities that I could tolerate 6 months ago--going to the grocery store, doing 20 minutes of muscle-building exercises on the floor (mostly lying on my back)--now send me into a crash, with horrible aches, the next day. This is why I've been back to that familiar rollercoaster life: feel better one day, too do much and crash the next. I thought I was making progress with the antivirals, so I am feeling pretty discouraged. I know I need to be patient and listen to my body. I'm just out of practice!

The Joys of Community

Twice in the past week, I was reminded of how important it is to find your people, connect with others, and be part of a community. With feeling so much worse than usual (plus the pandemic), I have been spending a lot of time holed up at home, in the recliner or--on bad days--lying on the couch. But, on Sunday, I recorded a podcast with Physios for ME about using a heart rate monitor to help ME/CFS patients stay within our limits. They had three physios (physical therapists in U.S. parlance) from their organization, one ME/CFS exercise researcher from Workwell Foundation, and several patients, including me. This is one in a series of podcasts they are doing to educate physical therapists about how to work safely with ME/CFS patients. Isn't it great that an organization like this exists?? It was a wonderful experience, "meeting" all these amazing people via Zoom, but the session lasted a bit longer than planned due to technical issues. Given my low stamina right now, I was exhausted and achy afterward, but I also felt exhilarated from the interaction, socialization, and just plain using my brain to chat with interesting, intelligent people! I will share the link to the videos as soon as they are posted. 

Then, on Tuesday, I totally forgot about a planned Skype meeting with an ME/CFS friend, Rachel. We originally met on Twitter and got to know each other better when she interviewed me for my new book (video at the link). Tuesday was one of my down days, so I wasn't up to Skype anyway, but when she reminded me of our appointment, I just called her on the phone instead. She wasn't feeling well, either, so this worked out well for both of us! We just chatted for about an hour (lying on the couch), first about treatments for OI, as planned, but then about all sorts of things. Besides the fact that she's a wonderful person and very pleasant to talk to, it's always such a lift to chat with someone else who GETS IT, who is living your same life. I was wiped out and not feeling well that day, but I felt uplifted and cheered by our conversation. The Joys of Community is another topic I covered in my recent book. For a sneak peek, take a look at the article I wrote for ProHealth that formed the basis for that chapter. It includes tips on how to find others you can connect with.

What I'm Reading and Watching

As I'm sure you understand, with limited energy and stamina lately, books, TV, and movies have been my primary forms of entertainment! You can see what I and my whole family have been reading this past week on my book blog, but here's a quick recap. 

I am STILL reading David Copperfield by Charles Dickens, my final book for my annual Big Book Summer Challenge, and a whopper! I'm still enjoying the novel itself but am tired of holding up this giant every night in bed. I am trying to finish it by Monday, so it will count for my challenge.

On audio, I just finished listening to another Big Book, American Dirt by Jeanine Cummins, which was excellent. It is the gripping story of a Mexican mother and son who must go on the run after a drug cartel kills their entire family and threatens their lives, too. They are heading for the U.S., but it is a harrowing journey, with the cartel never far behind. Besides being fast-paced and suspenseful, it is also moving and powerful and very good on audio. I also listened to The Dutch House by Ann Patchett, a novel about a brother and sister which was outstanding on audio. It's read by Tom Hanks, who completely inhabits the main character/narrator. Want Tom Hanks to read you bedtime stories? This one is a great choice! My review at the link.

We're watching a lot of fun TV shows right now, but I've only added on new TV review to the blog recently: Sex Education. It's a warm and funny British show about a teen boy with a sex therapist mother (played by Gillian Anderson) who starts his own business at school giving sex advice to his classmates, despite his complete lack of experience. We enjoyed two seasons (a a third is coming in 2021!) and laughed like crazy! It's a good pick-me-up show. You can read all about it at the link and see a trailer.

Last weekend, we also enjoyed a movie, The Rainmaker. It's an older one, from 1997, but with its all-star cast, excellent source material (adapted from a John Grisham novel), and directed by Francis Ford Coppola, it was highly entertaining--just a good movie to escape into! Read my full review and watch the trailer at the link.

 

 

How are YOU doing this week?

And what are you reading, watching, and enjoying?

I am happy to report that my problems with comments not showing up on this blog are partially improved--many more are showing up now after a change to the settings. They are still not all coming through, but give it a try! You can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.