COVID-19 Long-Haulers and ME/CFS

A new term has emerged in the medical community and the news media in the past few months: COVID-19 long-haulers. This refers to those patients who recover from COVID-19, their respiratory and other viral-specific symptoms clear up, but they continue to be severely ill, suffering from heavy fatigue, general pain, and a strange worsening after even mild exertion.

Sound familiar?


ME/CFS Known to Begin After Various Infectious Triggers
 
Many of us who've lived with ME/CFS for years expected this to happen almost as soon as the coronavirus pandemic began. After all, about 75-80% of ME/CFS patients begin their chronic illness after some sort of infectious trigger, so why wouldn't a novel coronavirus do the same?

One of the earliest scientific studies to confirm this suspected relationship between infectious triggers and lingering ME/CFS was the Dubbo study in Australia. They studied 253 people who contracted either Epstein-Barr Virus (EBV which causes mono aka glandular fever), Q fever, or Ross River virus and found that approximately 11% of them went on to develop ME/CFS. This basic concept (and percentage) has been proven in many more studies since: after certain infections, about 10-11% of the patients do not fully recover and instead develop ME/CFS. This relationship was further born out by the many "cluster outbreaks" that have occurred over the years (documented as early as 1955 in London), including the Incline Village, NV, and Lyndonville, NY, outbreaks in the 1980's that finally got the CDC involved. Over the years, Lyme disease, enteroviruses, and other infectious agents have been positively identified as triggers for ME/CFS, in addition to the three infections studied in Dubbo.

Given this well-documented history, it only makes sense that a coronavirus could be a trigger, too. In fact, my two sons first showed symptoms of ME/CFS at the same time in 2004, just after one son and their dad had a run-of-the-mill respiratory virus. The virus included a nasty cough that lasted for six weeks, making me wonder now whether it was also a coronavirus.

When headlines started to emerge all over mainstream media like this one, "No One Knows Why These COVID-19 Patients' Symptoms Keep Relapsing," I found it quite frustrating. I felt like shouting, "Yes, we DO know why! There's no mystery!"

ME/CFS in the News

Finally, the medical community and mainstream media began to catch on that this "mystery" of the so-called COVID-19 long-haulers might be ME/CFS. It's always a thrill when ME/CFS makes it into the mainstream news since we are so used to being ignored and invisible. Soon, it began to pop up in articles and news stories all over the world.

This article from venerated news magazine The Atlantic from June, "COVID-19 Can Last for Several Months," was one of the earliest to not only mention ME/CFS but include some solid scientific information about our illness, toward the bottom of the article. It mentions the Dubbo study, accurately describes ME/CFS, including the exertion intolerance, and provides the alarming news that the 2003 SARS epidemic in Hong Kong left 27% of its patients with ME/CFS. This is alarming because all other studies of other infectious agents have found that 10-11% go on to develop ME/CFS and because COVID-19 is related to SARS.

By July, the news was filled with articles about COVID-19 long-haulers, with many of them mentioning ME/CFS. The Scientist, another very well-respected journal, published "Could COVID-19 Trigger Chronic Disease in Some People?" This article includes detailed, accurate information about ME/CFS, including a cool infographic, and emphasizes the severity of the illness and the way that its patients have been ignored over the decades.

This news story from the UK includes an interview with a COVID-19 patient who seems to have developed ME/CFS and a doctor who describes ME/CFS in an accurate, detailed way:



Even Dr. Anthony Fauci, our national hero, mentioned ME/CFS several times in his press conferences, interviews, and other public appearances. Here, CNN reported that Fauci said those not recovering from COVID-19 were "highly suggestive" of ME/CFS. More recently, in August, CNN published a far more detailed article about ME/CFS and COVID-19, with quotes from Dr. Fauci - check out the 1-minute video at the top of that article.

This doctor describes his own experience as a COVID-19 "long-hauler" in this segment on the Today show (their "expert" mentions ME/CFS, though he's clearly not really an expert in it!):




More Research!

All of this unusual attention on ME/CFS is having two positive effects: research into whether COVID-19 long-haulers have ME/CFS and an increased interest in funding ME/CFS research in general. As usual, Cort Johnson at Health Rising has summed this up nicely. As Cort's article explains, the US's National Institutes of Health has already undertaken two studies on the long-term effects of COVID-19, including effects on the immune system.

The largest and most in-depth study on COVID-19 and ME/CFS has been initiated by one of the top ME/CFS research organizations, Open Medicine Foundation. This page describes the study they have undertaken to determine for certain whether COVID-19 long-haulers have developed ME/CFS and what percentage of patients fall into that category.

This study on Medscape, "Research Examines Link Between Long COVID and ME/CFS," provides an overview of the data already gathered, plus previous studies on infectious agents (including SARS) that have triggered ME/CFS.

Whether all of the studies on COVID-19 long-haulers underway--and those to come--mention ME/CFS by name or not, their research will help those of us with ME/CFS by investigating deeply the mechanisms by which inflammation and immune dysfunction keep people sick after the infections have cleared up.

Bottom line is that it's horrible that so many more people are being added to the ranks of those with ME/CFS because of COVID-19, but in the long run, the increased attention to our normally-ignored disease will hopefully lead to some answers and possibly treatments.

Movie Monday: The Rainmaker

As usual, I was searching for a free movie to watch on Saturday evening (while waiting for my husband to bring home our favorite burgers & fries take-out from a local restaurant). On a list of "best thrillers on Amazon Prime," I found The Rainmaker, a 1997 movie, adapted from a John Grisham novel. Featuring an all-star cast, it is more of a legal drama than a thriller. I don't know how we missed it when it first came out, since we are both Grisham fans, but we thoroughly enjoyed it this weekend on the small screen.

As with most Grisham stories, this one is set in the South, this time in Memphis. Matt Damon stars as Rudy Baylor, a brand-new lawyer just out of law school. In need of some income, he takes a job with Bruiser Stone, played by Mickey Rourke, a successful but crooked lawyer. Bruiser encourages Rudy to find his own clients (that's the only way he'll earn a living) and bring in his own business, but honest, humble Rudy balks at being an "ambulance chaser." He already has two cases, though: a will for an elderly woman (who agrees he can rent a room from her) and an insurance case concerning a young man dying of cancer whose parents' health insurance has refused to pay for his treatments. In hanging out at the hospital, per Bruiser's instructions, Rudy also meets Kelly, played by Claire Danes, who has been put in the hospital by her abusive husband, bringing back Rudy's memories of his alcoholic father who beat both his mother and him. Deck, played by Danny DeVito, is a smart and experienced lawyer-wanna-be who hasn't yet passed the bar exam and also works for Bruiser. When Bruiser's office is raided by the Feds, Rudy and Deck decide to hang their own shingle. Rudy's insurance case, which he feels strongly about to get justice for the family, turns out to be a much bigger case than expected, as the insurance company is a huge conglomerate that sends out a team of expensive-suited lawyers who expect to stomp on newbie Rudy and his poor clients. Tensions build as the case finally goes to court, and both sides try to convince the jury of their position. It's a classic David-and-Goliath story.

We both enjoyed this courtroom drama very much. It's a multi-faceted story, with Rudy juggling the multiple cases, Rudy and Deck trying to start their partnership, and the big trial. The cast is outstanding, and we were constantly and pleasantly surprised by the young actors who have gone on to achieve greatness (as well as the older ones we recognized from long careers). Rudy is the kind of character who is great fun to root for: the kind, honest underdog up against corporate greed. Combining excellent source material with that talented cast and direction from Francis Ford Coppola, it's classic Grisham and also classic movie magic.

The Rainmaker is currently available on Amazon Prime or on DVD.

Weekly Inspiration: Novel Insights

It's been a while since I've had the time, energy, and resources (electricity, WiFi, computer) to write a Weekly Inspiration post, so I am happy to be back at it on this quiet Sunday morning. I hope everyone sleeps a bit longer ...

It's been even longer since I shared favorite quotes from a book with you, something I very much enjoy, so this morning I turned to my Quote Journal (currently a red Moleskin). Looking back over quotes from books read this winter, I found many from Drive Your Plow Over the Bones of the Dead by Olga Tokarczuk, a slim and very entertaining novel translated from Polish. I read it in January for a readalong with the Book Cougars podcast, one of my favorites. This unusual book with the strange title (it's a line from a William Blake poem) was short-listed for the International Booker Prize, long-listed for the National Book Award for Translated Fiction, and won the 2018 Nobel Prize in Literature. It's a quirky, funny, thoughtful novel that deserved all those accolades, and I am glad to have read it. It often made me laugh out loud, I loved the clever way the author said things (and kudos to the English translator, Antonia Lloyd-Jones), and I filled my Quote Journal with examples.

You can read my full review at the link. Briefly, it's about Janina, an older woman in Poland who lives up in the mountains near the Czech border. She has some sort of unnamed chronic illness that sometimes flares up unexpectedly, and she is used to spending a lot of time alone, as her "neighborhood" is mostly summer homes that she cares for during the long, brutal winter. There is a twisty mystery in the book, about a string of murders in her area, but what delighted me most about the book were Janina's astute and often hilarious observations about life. Here are a few examples:

"Once we reach a certain age, it's hard to be reconciled to the fact that people are always going to be impatient with us."

As someone who is both chronically ill and aging, I could see the wisdom in this statement! My own illness is quite invisible to others, but I know that Janina's observation holds true for friends of mine whose disabilities are more obvious (though it might be more accurate to say "ignored" than "impatient" in that case). And I have certainly witnessed the impatience of younger people toward older people. I guess I have that to look forward to!


About her mysterious ailments and the role of doctors and medical testing:

"We have this body of ours, a troublesome piece of luggage, we don't really know anything about it and we need all sorts of Tools to find out about its most natural processes ... The only coarse and primitive Tool gifted us for consolation is pain. The angels, if they really do exist, must be splitting their sides laughing at us. Fancy being given a body and not knowing anything about it. There's no instruction manual."

I'm sure we can all relate that that passage! How many times have we each wished for an instruction manual or some sort of magic to tell us what is happening in our bodies? We learn (hopefully) to listen to the hints, like pain, that something is wrong and we need to care for ourselves, but we rarely understand why these symptoms occur.  I have spent the past 17 years (since I was first diagnosed, a year into my illness) studying and reading the research about ME/CFS (and later, Lyme), and I still have only a basic understanding of the inner workings of my body and how illness affects it. I also love that she calls her body "a troublesome piece of luggage"!


General wisdom for us all:

"Everything will pass.

A wise Man knows this from the start, and has no regrets."

When I was finally diagnosed about a year into my illness, I sent an e-mail to friends and family explaining what my disease was and how it affected me. I received many kind and supportive messages back, but the one that brought me to tears and made me feel better was a simple "This too shall pass," from a close friend and old office-mate. He told me he'd had ME/CFS back in grad school (referred to as the "yuppie flu" back then) and was horribly debilitated for over a year and then recovered. Now, of course, he was one of the lucky ones, and I have not recovered (18 years now), but his words were still comforting and are still true. While the disease is still with me, the intense pain and grief of those early years did pass, and I have been able to find treatments that have improved my condition. I am still chronically ill and limited, but those early days of acute grief and mystery and helplessness have passed. I think this is so important to remember when tragedy, pain, grief, and other challenges hit you.


How we each contribute to creating our own world:

"...sometimes it seems to me we're living in a world that we fabricate for ourselves. We decide what's good and what isn't, we draw maps of meanings for ourselves ... And then we spend our whole lives struggling with what we have invented for ourselves. The problem is that each of us has our own version of it, so people find it hard to understand each other."

This is so true, that we each make our own reality. And it provides some insight into why other people probably can't truly understand our world of chronic illness. This certainly gives me something to think about with respect to the challenges I have with my family understanding my life. I think this is a good way to remind ourselves to be kinder, more tolerant, and less judgemental when faced with other people's realities, too.


This quote I include simply for fun because it made me laugh out loud, as did many sentences and passages in this quirky novel! I also read it aloud to my husband, and he laughed, too, so I hope my older male readers won't take offense.

"It's hard work talking to some people, most often males. I have a Theory about it. With age, many men come down with testosterone autism, the symptoms of which are a gradual decline in social intelligence and capacity for interpersonal communication, as well as a reduced ability to formulate thoughts. The Person beset by this Ailment becomes taciturn and appears to be lost in contemplation. He develops an interest in various Tools and machinery, and he's drawn to the Second World War and the biographies of famous people, mainly politicians and villains."

Well, my husband still reads mostly thrillers, but otherwise, this sounds pretty accurate! He could laugh because he knows I complain about him not talking to me. Although, the pandemic has changed things a bit. Now that he is working from home and not in an office with co-workers, and we are together every day, all day, he can get a bit chatty in between work calls, usually just about the time I am sitting down to do some work or writing! Again, we can laugh about this.


So, I can't resist one final quote from the book that is particularly relevant to pandemic/quarantine life:

"Boris' presence reminded me what it's like to live with someone. And how very awkward it is. How much it diverts you from your own thoughts and distracts you. How another Person starts to irritate you without actually doing anything annoying, but simply by being there. Each morning, when he went off to the forest, I blessed my glorious solitude."

I'll just leave you with that thought!

I highly recommend this very entertaining novel, full of mystery, insight, and humor. Janina is quite a character, as you can tell. You can read my full review on my book blog, and you can find it on Amazon in paperback or audio (to buy from indies or other mail-order, see the bottom of my review).

Enjoy your Sunday and have a good week!

News from Our House - August 20, 2020 - Another Crisis

We're experiencing another hectic, crisis-filled week here, but I wanted to take a few moments out for a quick update: I am still here and still interested in hearing how all of you are doing!

A New Crisis Pops Up

As I reported in my update two weeks ago, we lost power for two days when a tropical storm came through and then, last week, we lost power again for five days (while it got hotter and more humid!) and both of our laptops quit working on the same day, the day the electric was finally restored. I just got my laptop back this Sunday--almost six days and $280 to tighten up some cables! I was ready to finally catch up (I hadn't been able to get reliably online for two weeks at this point and had--still have--700 unread e-mails) and get some work done when another crisis hit.

Our son turned 26 this week. This is a big milestone in the U.S. because adult children are allowed to stay on their parents' health insurance until age 26 (thank you, Affordable Care Act!). We knew this deadline was coming, and our son is unfortunately still not well enough to live independently, so we submitted the proper forms from us and his doctor to keep him on our insurance. Much to our surprise, our insurance company agreed that he's disabled but concluded he could support himself! With that conclusion, his health insurance expires on August 31, and we would be forced to purchase a separate policy for him in the open market. This is a big deal because the health insurance through my husband's job is excellent, partly subsidized, and we have had it for 30+ years.

So, this week had one goal and one job to get done: prepare and submit an appeal for the insurance company. I focused all of my writing time on a letter from us, his parents, describing his symptoms, level of daily functioning, etc. I also spent a lot of time e-mailing and working with four of his doctors to get supportive letters from them. In short, it's been an all-consuming and very stressful project.

Yesterday, I hit an unexpected issue. In trying to convince the insurance company how bad off my son really is and how incapable he is of supporting himself, I got really depressed. My husband and I were both in tears. We normally try to stay very optimistic. If you read this blog, you know I am always looking for new treatments and ways to help our son. I have a very can-do attitude. As for our son, all he wants in the world--like all of us--is simply to live a normal life: to be well enough to live independently, earn a living and support himself, and get on with his adult life. That's impossible right now, but we try to remain optimistic that we can further improve his condition, especially after a serious relapse last year. So, to have to focus on the negative side and prove to them that he can not support himself just really got to me. I turned, as I always do, to our wonderful group for Parents of sick kids, and, as always, they provided much needed compassion, understanding, support, and practical help. If you have a child, teen, or dependent adult child with ME/CFS and/or related conditions, check out our group at the link (if you want to join, be sure to answer the questions that pop up after clicking "join").


My Health Improves

Ironically, in the midst of all these crises and stresses, I am feeling better than I have for five months! You may recall from my previous two updates that I had relapsed back in March, without knowing why. My doctor found that HHV-6, a common virus, was again reactivated in my body (this is a very common occurrence in those with ME/CFS, that normally dormant viruses became reactivated). In response, she put me on an antiviral, Famvir, that has worked well in the past for me. For the first two months, though, I struggled with Herxing (a temporary worsening as the meds kill off the virus, flooding the bloodstream with it, and setting off an immune reaction). I finally got the dosing right and got past the Herxing stage, I guess, because I have actually felt good recently! In spite of all the stress, my energy has been good, and I feel back to my "normal" baseline (which means still needing a nap in the afternoon but functioning fairly well otherwise). I have even been able to get back to exercising, both my weight/muscle routines and now that the weather has cooled off a bit, walking more regularly. What a relief!

What I'm Reading and Watching
(links are to my own reviews, where available)

I am still reading David Copperfield by Charles Dickens and loving it! I read a lot of Dickens in high school and always enjoyed his novels. Last summer, I re-read Great Expectations (listening to it on audio) and really enjoyed it, often laughing out loud as I walked around my neighborhood with my earbuds in! David Copperfield  is similarly funny, warm, and touching. It's easy to see why Dickens is a classic--he has such a way with words! So many of his sentences just stop me in my tracks because they are so clever and such a perfect way to say something, often with humor. It's also a wonderful story, with so many unexpected twists. On audio, I am still listening to American Dirt by Jeanine Cummins, a novel about a Mexican mother and son who must go on the run after a drug cartel kills their entire family. It's excellent so far, riveting and fast-paced.

On TV, we just finished what's available of two of our favorite shows, season 4 of Better Call Saul, and season 2 of Sex Education. Both have that perfect mix of warmth, humor, and compelling (though very different) plots. Fortunately, season five of Saul already finished airing on TV, so it should be coming to Netflix (soon, I hope), and Sex Ed just announced a third season. We are also watching the surprise second season of The Alienist (currently airing on TNT), Yellowstone (new to us but we are enjoying it), Lie to Me, a unique crime drama about lying, and the third season of In the Dark, an excellent suspense/crime show about a blind woman who witnesses a murder. Oh, and we just started Halt and Catch Fire, about the massive changes in the computer industry in the mid-80's--it's just as great as everyone has said! Review to come on that one.

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.

News From Our House - August 12, 2020 - Storms & More

As I wrote in last week's update, we got through Tropical Storm Isaias with a 2-day power outage and were happy to be back to "normal life." Little did I know ...

Truth is Stranger Than Fiction

If I read about our life this past week in a novel, I would think, "Well, it's a good story, but it's not believable." Probably most of us with chronic illness have felt this way at one time or another!

After that 2-day power outage from the tropical storm, life did return to normal but not for long. I went grocery shopping Thursday and restocked our fridges and freezers (including more ice cream!). I was in the middle of writing a post for my book blog Friday afternoon, when a sudden, violent storm hit, and we lost power again. It seemed even worse than the tropical storm that came directly through, and we later found out that four inches of rain fell in less than 30 minutes, and a tornado with 105 mph winds came through very close to us!

We settled in for another day without power but hoping it would come back sooner. Nope. We were without power for five days! It got hotter and more humid with each passing day. We were drenched in sweat at all times, which was especially challenging for my son and I with ME/CFS, as we have both become very heat intolerant. As my son said, the best approach was to just move as little as possible! He read four books last week, my husband and I scrambled to try to save as much food as we could in coolers (with daily trips for more ice), and we all waited for the power to come back any minute ... We slept in the basement, but it was even warming up down there after several days.

Sleeping in the basement

Our cell service was also partially out, since the first storm, so we could sometimes get texts out but calls were almost impossible (including calls to the electric company!). Finally, my husband found a small generator on Monday (they had been all sold out since the tropical storm). It wasn't enough to run our fridge/freezer, but we could run fans--what a marvelous invention!--and my husband hooked up the server so we got WiFi back.

Tuesday morning, the power was still out, but at least we had WiFi, I thought ... until I tried to start up my laptop. Nothing--just a black screen. Bizarrely, my husband's laptop wouldn't start up, either! That's just crazy--they were not connected in any way and both died on the same day. I could hear mine running but couldn't see anything, so I drove to the nearest Apple store (ahhh ... air conditioning!). Sure enough, the display screen wasn't working. They tried some on-site adjustments but finally decided they had to send it out for repairs/replacement: 5-7 days! That same day, my cell phone (a very old talk-and-text-only cell phone) started malfunctioning, and I realized its on/off/home button wasn't working. But, by noon on Tuesday our power came back!

Hurray for our new generator ... and for fans!

Looking on the Bright Side

It's been quite an ordeal, but of course, we were fortunate that no one in our family was hurt, and our house and cars were not damaged. One evening as the four of us ate dinner (cooked on the grill) around the kitchen table in the dark, with a little camping lantern for light, I remarked to my family that if I had to be quarantined and stuck without power, I was glad it was with them! The days spent alone in the house together brought back memories of the early days of chronic illness here, when three of the four of us were sick, and we got used to enjoying each other's company almost exclusively. Those days were very, very rough, but they definitely brought us all closer together.

The four of us on vacation last year - luckily, we enjoy each other's company!

Also, with my laptop in the shop, my phone faltering, and our cell service shaky at best, I finally gave in and joined the modern world. I went to Verizon today and got my first smartphone! Since I use a MacBook, I got an iPhone SE. Of course, all my contacts are in my laptop somewhere in New Jersey right now, but I'll get it all set up when I get that back. My mother is the most excited because she loves to send emojis, GIFs, and bitmojis, and she couldn't send them to my old-school phone. My sons are also glad I joined the 21st century.


Feeling Fine

Ironically, with the massive stress and intense heat, I have actually been feeling better than I have in many months! I think I finally hit the sweet spot with my antivirals, knocked back the HHV-6 enough, and got past the Herx reaction to the feeling better part. I am still only taking a half dose (half a pill of Famvir a day), but my energy has been good--great today, in fact, with the a/c back on! I managed yet another restocking trip to the grocery store today, after throwing away three big garbage bags of food this morning.


What I'm Reading and Watching

Just in time for the power outage, I started my next book for my Big Book Summer Challenge, David Copperfield by Charles Dickens. Yes, it is a hefty one! I am absolutely loving it so far, as I always do with Dickens--both laughing out loud and exclaiming at the horrifying bits. On audio, I just started listening to American Dirt by Jeanine Cummins, and it is wonderful already. Boy, was I glad I had moved a new audiobook from my laptop to my iPod just before my laptop gave out! You can see what all of my family has been reading during this crazy week at my book blog.

Since we had no TV, cable, or WiFi for most of the week, all of our usual shows that I mentioned last week were on hold. We're getting back to them now. During the power outage, we reverted to our camping habit: watching DVDs on my old laptop. Our favorite? Dexter! Yes, we are well aware of the irony of watching a show about a serial killer (though Dexter is a good serial killer) in dark campgrounds late at night! We are on season 6 and enjoying it very much. It definitely helped to provide a little treat at the end of each hot day for my husband and I.

So, that's been our mad, mad world here! 

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 (I ran a bunch of tests last week). 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.

News From Our House - August 5, 2020

Happy Wednesday! I am back with another weekly update from our house (like my new graphic?), just to stay in touch and let you know what's going on. I have a few things in particular on my mind this week:

The Joys of Electricity

Let me count the ways ... Tropical Storm Isaias came right through here yesterday, and even though it had been downgraded from a hurricane by then, it still did plenty of damage. Huge trees toppled all over our state. Tornados touched down and ripped down trees, overturned cars, and in one memorable photo (below), removed the entire back wall of a house! The parking lot of our local supermarket, just a few miles away, flooded so deeply that an entire car got swept into the storm drain and stuck. When three people tried to help the elderly driver of the car get out, all four were swept by the strong current through the culvert and came out on the other side of the shopping center! Miraculously, they were all OK. My husband drove past there yesterday and wondered why on earth there were giant Zodiac rescue rafts at our local supermarket (now we know).

Photo from Delaware News Journal

Given all that, we were quite lucky in that we only lost power, along with 100,000 other households in our tiny state. It was inconvenient (and hot and muggy), but we were fortunate that the temperatures this week have been in the mid-80's (F) instead of the high 90's, as they were for most of July. We made dinner on our grill (pro tip: whenever you buy a gas grill, get one with a stove burner on the side), hung out together without TV, internet, or video games, and were just barely able to sleep in the humid 69-degree night. When we called the electric company again this morning (Wednesday), they said our power would be restored ... by Friday at noon! That induced some panic, as our son was struggling to sleep on the hot second-floor, I was wondering how I'd manage to nap in the heat of the afternoon, and everything in our two refrigerator-freezers was steadily warming/melting (we ate all the ice cream last night before it turned to liquid!). As we were making plans and filling an ice chest with ice, surprise! The power came back on. We are very happy to be living in the 21st century again, and I am happy to be online again and connected.

Our grill burner saved us again!

The Power of Pain

Speaking of power, I have been thinking a lot this past week about the power of pain. I explained in last week's post how I got a bad burn on my stomach when a pitcher of iced tea exploded, throwing boiling water at me. I had no idea then that things would get much worse. The burn seemed to be healing well, thanks to loads of aloe vera, until the large blister broke, leaving tender, raw tissue exposed. This has been extremely painful all week. It also meant I needed to bandage the area (after smothering it in antibiotic ointment to avoid infection). The burn itself is painful, but the tape from the bandages has also irritated my skin, leaving a pink, painful/itchy rectangle around the burn! Each day is a test of endurance, trying to find a new way to bandage the exposed area without putting more tape on the already-irritated skin, and by the end of the day, I am just about in tears. It hurts for even loose fabric to rub against my skin, so I often tuck my shirt up into the bottom of my bra to expose my belly ... and believe me, that's a sight no one wants to see! My bikini days are long past.

So, my question for all of you is: how do you handle constant pain?

Chronic Pain is Exhausting.

Pain has never been a part of ME/CFS for me, except for flu-like aches during a crash or the joint pain from Lyme disease (which quickly retreats when I treat the infection). I know that many with ME/CFS and similar conditions experience chronic pain on a daily basis, including my own son who always has joint pain from Lyme and bartonella. I am discovering that the pain just completely wears me down. By the end of the day, I am in a bad mood, exhausted, ready to just rip the skin off my stomach. My greatest empathy goes out to those who live with pain every day. I am in awe of your strength.

The Blues

And that brings me to the blues. This past week, several times, I have just felt inexplicably depressed, especially in the afternoon and evening. I suspect much of it is physiological, the result of the constant pain and irritation, plus I am still struggling to get the dosing right on my antivirals, so my energy has been very poor for months. Last Saturday, after my nap, I was feeling particularly down and couldn't figure out why when I spotted something I had said to someone else on Twitter that very morning:

"Feel free to wallow today, if that's what you need. Be kind to yourself."

That really resonated with me, and I realized I needed to take my own advice. I gave up on trying to get things done (I have some serious issues over always trying to be productive), went out to our screened porch with a glass of decaf iced tea and a piece of extra-dark chocolate, and just took some time for myself. I browsed through a magazine and played an online game (I am getting really good at Word Wipe!), and though I wasn't exactly ebullient afterward, I did feel a bit better. Self-care is so important, and I am so bad at remembering that! With my whole family home (and here all the time), I have very little quiet time to myself lately, and I think that is part of the problem, too. I should remember to listen to my own advice more often!

Spending time on our screened porch is relaxing.

What Are You Reading & Watching?

I just finished reading Normal People by Sally Rooney, a highly acclaimed novel that was recently made into a Hulu TV show. Don't laugh, but I chose it because I needed a lightweight paperback that I could hold up and didn't have to rest on my painful stomach! It was very good, and I want to watch the show now. Today, I started David Copperfield by Charles Dickens, a birthday gift and a classic I have long wanted to read! This one qualifies for my Big Book Summer Challenge (there's still time to join the fun!), so it is difficult to hold it up without touching my stomach, but I am determined to make it work. Here's what my whole family has been reading this week.

On audio, I've been listening to The Dutch House, a novel by Ann Patchett. It's read by Tom Hanks, and I am finding it hugely soothing and comforting to hear that familiar voice reading me a story in my earbuds. As you would expect, he's doing an amazing job with it and completely inhabiting the main character/narrator. Oh, and it's a good story, too, about a brother and sister and the house they grew up in.

On TV, we are watching so many great shows right now! Let's see ... we are rotating through episodes of Better Call Saul, Yellowstone, Lie to Me, the much-anticipated second season of In the Dark (sooo good!), the unexpected second season of The Alienist, and we just finished the excellent second season of Hanna. On my own, when I could find 22 minutes to myself, I just finished watching all three seasons of Atypical, and I am missing it so much! It is a truly outstanding family drama about a young man with autism and his family, and it has both heart and humor. I know it's good because I finished it more than a week ago and can't stop thinking about it (luckily, season four is coming in 2021). On Saturday night, we watched a movie, Transiberian, that was very good--an action-packed thriller with a great cast, set in the Siberian winter. (My reviews at the links.)

What have you been watching and reading lately? I am always looking for suggestions!

Tell me about your week in the comments below or on my Facebook page or on Twitter.

(Note that I am still trying to resolve my problem with comments from mobile devices not showing up. It is especially frustrating because my other blog is set up exactly the same and still works just fine, and Blogger has no support at all ... but I am continuing to try to get to the bottom of it!)

Movie Monday: Transsiberian

As usual these days, we were scouring Amazon and Netflix Saturday evening, looking for a movie to watch. My husband most enjoys thrillers (and I like them, too), and we lucked out last month with I See You, which was excellent and super-twisty. This week, he found a 2008 movie on Amazon Prime:  Transsiberian, about an action-packed train ride through Siberia, and we enjoyed the suspenseful story very much.

As the movie opens, Roy (played by Woody Harrelson), and his wife, Jessie (played by Emily Mortimer), have just finished up some volunteer work with their church in China and are boarding the Transsiberian Railroad for a trip to Russia, where they will tour Moscow before returning home to the U.S. Roy is a pure-bred, white-bread, All-American Midwesterner who loves trains, has childlike enthusiasm, and makes friends with everyone he meets. Jessie is quieter and has a more complicated past but loves Roy and enjoyed the volunteer work, her first time doing anything like that. They are paired up in their tiny train cabin with another couple. Carlos, played by Eduardo Ximenez, and Abby, played by Kate Mara, are clearly very different from Roy and Jessie, with Carlos' sly looks and teasing them about their clean passports and Abby's heavy make-up and quiet confidence. The two couples bond while traveling, but after Roy gets separated from the group, things begin to fall apart. Back on the train after a stop in a tiny Russian village, Roy and Jessie meet Detective Grinko, played by Ben Kingsley, who explains that he and his team are looking for dug smugglers, and the railroad is a common smuggling run. Things go a little off the rails at the point, if you'll pardon the pun, and the suspense builds, as the action and surprises ramp up.

The setting, including both the train itself and the vast, snowy Russian countryside, is a big part of this thriller and adds to its ominous tension. The cast are all excellent in their roles, driving us to IMDB, as usual, to see where we knew the two women from, and Harrelson is the perfect innocent Midwesterner. True to its thriller framework, the story is filled with unexpected twists and turns, and the tension builds as the quiet train ride turns deadly. We both enjoyed this movie very much.

Transsiberian is currently available on Amazon (included in Prime).

Here's the trailer; however, be forewarned that it contains some mild spoilers. This is the official trailer, so maybe they thought you'd figure these things out the first time you saw the characters. I did see the trailer first and still enjoyed the movie and had plenty of surprises in store.

If you prefer to go into a movie cold, skip the trailer and just know it's a suspenseful thriller, and give it a try!