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!

Weekly Update July 29, 2020

I am still having trouble finding the time to write all the blog posts I want to write here! I have a long list of posts planned: an update on my son one year after his relapse and new diagnoses and treatments, research updates, and another COVID-19 and ME/CFS update. But those kinds of posts take a lot of time and energy and research. Things here at my house are still super-hectic.

So, I thought I might try some shorter, quicker weekly updates, about what's going on medically with my son and I and what's going on personally with me, too. I realized that I used to write multiple posts a week here when I first started the blog, using it as more of an online journal (for a little nostalgia, you can check out my posts from July 2006!). These days, much of that day-to-day chatting occurs more on my Facebook page and on Twitter. So, I'm going to try going old-school and posting updates here on the blog more often. Please let me know what you think about that and which kinds of posts you like the best! (Note: I am having a problem with Blogger not showing comments made from mobile devices, so if that's you, you might try commenting on Facebook or Twitter, at the links above, for now, while I try to resolve the issue.)

Viruses and Other Infections

Still no sign of COVID-19 in our family, thank goodness, but as I explained in my post earlier this month, Crashes, Infections, and Treatment ... Oh, My!, my Lyme disease relapsed this winter, which was probably the cause of the HHV-6 virus reactivating in me this spring, causing a long--and these days, unusual--crash. As I explained in that post, I am treating it with Famvir (an antiviral) but started out on much too high a dose and Herxed (worsened) considerably. I'm happy to report that I figured out the dosing. I stopped taking it entirely for a few days, and once I felt better, restarted at just a half pill every 3 days (normal dose is 1 pill per day). It took about 6 weeks, but I am now up to the full dose, taking one pill a day, and feeling pretty good. I am theoretically able to take walks again, though it's been far too hot and humid here!

On the Lyme front, this relapse came just about 15 months after the last one (it's usually more like 3-4 years), so I have added some things to my treatment protocol (based on advice from my son's Lyme specialist). Stephania extract is supposed to help draw the infection out of the tissues where it hides (that's how the Lyme bacteria manages to hang on for so long in many people). I was careful with that one because the label said to be cautious if you take beta blockers (which I do, for Orthostatic Intolerance, OI), but I kept the dose low-ish and haven't noticed any side effects. I am also taking Samento aka Cat's Claw, a common herb used to treat Lyme and other tick infections, which is also supposed to help pull it out into the bloodstream where it can be treated. Those two are in addition to the A-L Complex (part of the Byron White protocol). I recently reached the full dose of Samento (the latest one I added), so I'll give it a month or so at this level and then try stopping treatment again. I haven't had any obvious Lyme symptoms in months. It's all so complicated!

Other Medical Issues

As if ME/CFS, Lyme, and assorted infections wasn't enough to deal with, I've had a couple of unrelated crises come up this past week. Last Friday, I was making a pitcher of iced tea, and when I poured boiling water into the glass pitcher (as I always do), it exploded! The pitcher only broke into a few big pieces, but the boiling water was hurled all over (including straight at me) at great velocity. It hit me in the stomach (again, so grateful there was no glass as well), leaving a pretty bad burn in a ring around my belly button. It was mind-blowingly painful that day, but I used cool water compresses and LOTS of aloe, and it is gradually healing, There's one blister, but otherwise, it's getting better every day. The combination of pain and adrenaline left me completely wiped out the next day, as you can imagine.

Earlier that same day, I began to notice a dark spot on the edge of my vision, so I went to see my eye doctor yesterday. It's not a floater--it's just one dark spot that stays in the same place; I can see it in the right eye when I look to the right. She did a thorough exam--twice!--and couldn't find any sign of retinal problems or anything else, so that's a relief. Just a "wait and see" thing for now; hopefully, it will go away by itself.

Family Crisis

Our biggest issue here the past few months has been my 95-year-old father-in-law. He lives in his own apartment in Independent Living but has, of course, been isolated since March. They closed the dining room and have been delivering meals to the apartments, and even though it's not a nursing home or assisted living, the company that runs it has forbidden residents from leaving the building. Bottom line is that we saw a gradual decline in him, mentally and physically, with the isolation. He was OK on Father's Day, when they finally allowed us to visit with him outdoors, but then he declined sharply in the month after that. We treated a mild UTI (which can have a serious effect on senior's cognitive function) and hired in-home care to stay with him three hours a day, five days a week. That just started two weeks ago, but between that and treating the infection, he has improved somewhat. The downside is that it is very expensive, and he won't be able to afford it for long. So, my husband was running over there twice a day (down to once a day now), and I spent many hours on the phone calling in-home care services and assisted living facilities (which are all still on complete lockdown here, so we would no longer be able to see him). It's been a very difficult and stressful situation, and we're not out of the woods yet, but we had a nice socially-distanced visit with him outdoors on Sunday.

Visit with my father-in-law

Good News

Just to end on a positive note, among all the stress and crises have been some good times, too. As I've been feeling better, I've been able to start walking again and occasionally meet a friend or two for a shady walk at our local nature center. We've had temps in the 90's with high humidity and heat indices in the 100's the last couple of weeks, but sometimes we can get out in the morning before it gets too bad.

Covered bridge at our local nature center

I even enjoyed an evening out with my two closest friends this week! We got Thai take-out (and ate it at a long table, well-separated!) and caught up - we've missed each other. Then, we relaxed in recliners and watched Hamilton on her big screen TV. Broadway needs to add recliner seats to its theaters! It was my first time seeing it, so I was very excited--and yes, it was as good as everyone has said. The songs are still rattling around in my head.

In the midst of a very stressful day and week, we celebrated my 55th birthday last week. It had been a rough day for me, but I had a very enjoyable evening with my husband and adult sons. The four of us actually ate OUT at one of my favorite restaurants (they have a huge outdoor patio, with lots of space between the tables). It was wonderful to just be out again, the shade and breeze made it a decent evening, and the food was delicious. I even had an 8 oz. beer! Then, we came back home for a mocha cake from a local bakery, and a pile of presents. It was a very relaxing, nice evening with my family.

Wow, my quick update turned out to be pretty long, but you're all caught up now! I'll try to keep up with shorter weekly updates. Let me know what you think.

So, how are YOU? How's your summer going so far?

P.S. If you like to read, join my annual Big Book Summer Challenge over at my book blog! You just need to read at least one book of 400 or more pages by early September. I've had a record number of people sign up this year--I think everyone is happy to have something fun (and safe) to do! So, join the fun (and yes, audios count, too).

TV Tuesday: Lie To Me

As I mentioned in my Summer 2020 TV preview, our son recommended a show to us that my husband and I are loving so far. Lie To Me is a unique crime show about a consulting group that can tell if someone is lying, based on the science of micro-expressions, by studying subtle changes in their facial expressions.

British actor Tim Roth stars as Dr. Cal Lightman, who has devoted his life to studying the science of using facial expressions to tell when someone is lying and when they are telling the truth. He runs an independent consulting firm with his business partner, Dr. Gillian Foster, played by Kelli Williams, and their firm is often hired by various law enforcement officials, including the FBI, to assist with cases. Eli Loker, played by Brendan Hines, also works for the firm and has a rule to never lie, which makes working with him interesting! Rounding out the team is a new hire, Ria Torres (played by Monica Raymund), who is what they call "a natural" and has an innate ability to tell when someone is lying, though she is gradually also learning the science from the others. Always knowing when someone is lying makes relationships interesting, as when Cal's teen daughter, Emily (played by Hayley McFarland) tells him she is sleeping over at a friend's house, and he can clearly see that she is lying. Cal has learned there is a time and a place to call someone on a lie, though the younger members of the team are just learning that. In each episode, the team is hired for a case (sometimes two cases, and the four of them split up), where telling truth from fiction can provide crucial information to law enforcement or private clients. Early cases range from a drug kingpin in prison up for parole who says he is reformed to a high school student accused of killing a teacher who swears he's innocent to a congressman accused of having an affair. Sometimes, they discover the accused or the witness is lying but perhaps not about what the police think.

We are really enjoying this entertaining and unexpected show so far. Each case and each episode is unique, with twists we don't see coming, plus as with most crime shows, the personal lives of the characters come into play as well. There is a bit of a Mentalist feel to the show (an all-time favorite at our house), except the focus here is on science rather than tricks and mental maneuvering. One fun aspect to the show is that when one of the experts is explaining how a certain facial tic denotes lying, they often show photos of historical figures illustrating the rule! The characters are all interesting, and the acting is excellent. The combination of suspenseful mysteries, great characters, and a sense of humor has made this show one of our current favorites, in our regular rotation.

Lie to Me originally ran for three seasons, from 2009 to 2011 on Fox. It is available on Amazon or free through IMDB (use the Amazon link to see the free option).

TV Tuesday: Atypical

As I mentioned this week in my Weekly Inspiration post (Lift Up Your Spirits), my idea of comfort TV is shows about teens and young people. I don't know why, but I love watching a show set in high school or college (or shortly after), especially in stressful times. Maybe it's because their problems are so very different from my own, and I already successfully survived that stage of my life. In any case, I have a new favorite show in this genre that also touches on the world of chronic conditions/disabilities: Atypical. I am completely obsessed with this show about an 18-year old boy with autism and his family.

Sam Gardner, played wonderfully by Keir Gilchrist, is an 18-year old with autism who is in his senior year of high school. His mother, Elsa, played by Jennifer Jason Leigh, has built her whole life around helping Sam overcome challenges, fighting battles to get him the rights and accommodations he needs, and making sure that Sam and his teen sister, Casey (played by Brigette Lundy-Paine), have perfect childhoods. She has a color-coded calendar on the wall, stacks of Post-Its at the ready, and she is generally super-mom in every respect. Her husband, Doug, played by Michael Rapaport, works as an EMT and loves both of his kids, though he's been far less involved in Sam's life than Elsa has. Sam's therapist, Julia (played by Amy Okuda), encourages him to take steps toward independence, and when Sam says he wants a girlfriend, Julia is supportive. Sam's newfound independence, though, completely disrupts Elsa's life, leaving her to wonder what her role is now. Sam gets questionable (hilarious) dating advice from his best--and only--friend, Zahid (played by Nik Dodani), who works with him at the local electronics store. Meanwhile, Casey struggles with the decision of whether to leave her public high school when she is recruited by a fancy private school for their track team. Through the three seasons (so far), Sam takes increasing steps away from dependency into his adult life, while the rest of the family tries to adjust and deals with their own issues.

I love everything about this show! Though I was unfamiliar with any of the actors other than Jennifer Jason Leigh, the entire cast is outstanding, and I like all of the characters. Gilchrist is particularly convincing in his portrayal of a young man with autism (I was actually surprised to find on his IMDB page that he's not autistic himself). The relationships between the characters and especially the family members are warm and lovingly portrayed, including the inherent paradox for Sam and Casey of her sometimes have to take care of her older brother. The show is by turns moving, thoughtful, and funny. From my role as the parent of (at one point) two kids with chronic illnesses, who required accommodations at school, much of the show--and especially Elsa's role--are very true-to-life and an accurate representation of how one person's condition can affect the whole family (don't worry--I understand that autism is not an illness, but many of the challenges in life are similar; there is a lot here I could relate to). On the other hand, I am also learning a lot about autism specifically, which has been very enlightening. It is dealt with honestly, openly, and, from what I understand from others, accurately. I love this family, and I love this show! I am now into season three and dreading when I finish it (though I see that a fourth season is planned).

Atypical is a Netflix original, so it is available on Netflix.

Check out the trailer to see a glimpse of the family dynamics and the fabulous humor in this show:

Weekly Inspiration: Lift Up Your Spirits

I haven't had much time for this blog lately; life at my house has been busy, chaotic, stressful, and exhausting! Both adult sons are living at home, one just started his new job this week, we are still struggling to care for my 95-year-old father-in-law who has sharply declined in recent months, and my older son and I had an out-of-state doctor's appointment for him this week (about 5 hours in all for us). Whew. Oh, and this week, I was also trying to take an online course I'd signed up for a while back about running Amazon Ads for my book: I've been working on it all week (in between all the rest), and so far, every single one of the 12 or so ads I've submitted has been rejected. Why? Because using the words "chronic illness" is "unfairly targeting customers based on their personal characteristics"! Yeah, really! Anyway, all the activity and stress finally caught up to me, and I crashed badly on Thursday. Luckily, my crashes now don't last long.

All of that is a long way of saying that I often need a mood boost! Anything that makes me laugh or smile or lifts my spirits can help. This is especially true in these challenging times we are all living in; the constant barrage of news, politics, and conflict can really affect my mental and physical health. Sometimes, I need a break from it all.

So, here, I thought I'd just collect a few of the sources I turn to to lift my spirits. Please share your mood-lifters in the comments or on social media. I'm on Twitter and have a Facebook page for this blog, and I often post uplifting things in both places, so there's your first tip!

Chronic Illness Boosters

There are large, supportive communities for chronic illness on social media. I have a separate Twitter account and Facebook page for this blog, and that has worked out well. Those chronic illness communities are like my "safe spaces"--the places where I can go on social media to (mostly) avoid politics and conflict and instead find kindness and support. So, you can start by "liking" my Facebook page and connecting with me on Twitter, and from there, you will find others who are like-minded. A few particularly positive and uplifting people/accounts to connect with:

ME/CFS Self-Help Guru
(aka Julie)
Julie and I worked together for years for the ProHealth website (she edited their Inspiration Corner page, which I frequently wrote for), and she has very active social media accounts, all focused on optimism, support, positivity, and lifting the spirits. You can follow her on Twitter or like her Facebook page or visit her blog and in all of those places, you can always find joy, comfort, and kindness. She offers free courses and videos, as well as daily posts, all focused on self-care and inspiration. This post of hers was particularly helpful to me this week, and I shared it to my own Facebook page:

Not Just Tired
This is another of my favorite chronic illness people to follow online. She is well-known for her #MyDailyThankYou and #JoyinSummer (or whatever season we happen to be in) posts, and lots of people join in! This creates a whole supportive environment of positivity and kindness that I always find soothing and fun. You can follow her on Twitter, like her Facebook page, or visit her blog (her latest post is actually about those two hashtags above and the positive impact they have had on her life). Then, join in the fun! Post your own gratitudes and joy with the hashtags, and you will find an entire community filled with uplifting posts.

One of my own recent #JoyinSummer posts

To Make You Laugh or Smile

Sometimes you don't need chronic-illness support, you just need something to lift your spirits and take your mind of all the bad stuff going on (or your own symptoms). A few things have caught my eye recently:


The Far Side is Back!
Gary Larson fans rejoice! The renowned cartoonist, famous for his many years of irreverent and hilarious The Far Side comics, is back from retirement! I guess he figured with all that's going on in the world, we needed a good laugh more than ever. He says he is now experimenting with digital cartooning. He kicked off his renewed career with a cartoon called The Taxidermist, which you can see at the link. From the home page of his website, you can laugh your way through plenty of classic Far Side cartoons or check out the section called New Stuff. A great place to visit for your daily laugh or to immerse yourself in silliness for a bit.


Seniors Pose as Classic Album Covers
I just saw this one this morning on the Today show, and it is so cool! A group of seniors in a retirement home in the UK posed as classic rock (and a few contemporary) album covers. They are all just awesome and guaranteed to put a smile on your face. Here's a sample below, from a David Bowie album, but you can check out all of these amazing seniors here. This is an especially good lift if you've been feeling old lately!

Hoda's Morning Boost on the Today Show
Each morning, at about 8:05 am (Eastern time), the Today show does a happiness boost after their 5-min overview of the day's news (which is just about all the news I can take these days). I look forward to these daily lifts, which can vary from a reunion that brings happy tears to your eyes to something sweet that makes you smile to something that will leave you laughing out loud and sharing with everyone you know. You don't even have to watch the 5-minute news recap first--you can find a whole page of Boosts on the Today website. As an example, this was one of the boosts that made me laugh like crazy and run downstairs to show my husband (turn up the volume):






Comfort TV and Movies

Sometimes, you just need to totally withdraw from the world, wrap yourself in a blanket, and comfort yourself with some good escapist TV and movies. This means different things to different people. For some, it's trashy reality TV (both of my sons are currently obsessed with Trailer Park Boys). For others, it's rom-coms or favorite old movies. And for others, it might be silly sitcoms. Me? I get my comfort TV from shows about high school students. I don't know why, but I love watching shows about young people, preferably those with a sense of humor mixed in with the drama. Maybe it's because teens' problems are so very different from my own.

I was a huge Glee fan and still turn to it when I need extra-comfort--it's not only got teens, drama, and humor but also awesome singing and dancing to lift your spirits. If you've never watched it before, I highly recommend it (currently available on Netflix). A more recent TV show with similar "feels" is Zoe's Extraordinary Playlist (on NBC website, Peacock, Hulu, and Amazon). It's a silly premise--a young woman can hear other people sing their feelings--but I loved watching it this spring because it's fun, colorful, funny, and filled with music and dancing (my review at the link above).

I was late to the game with Freaks and Geeks, but once I discovered it, I loved it. Unfortunately, it is no longer on Netflix (where I watched it) and is currently unavailable anywhere, due to some music copyright issues, but hopefully they will sort that out soon. For now, it is only available on DVD.

My recent comfort TV choices (and I have needed a lot of comfort TV lately) have been Never Have I Ever (on Netflix), about an Indian-American girl struggling to fit in (loved it!) and my current go-to, Atypical (also Netflix), a really awesome dramedy about an 18-year-old boy with autism and his family. I love this show! I am totally hooked on it. Besides being entertaining, it is an excellent portrayal of life with autism and also how a child with a disability affects the entire family (something we can certainly relate to). It's just really well-done. I am also watching an old favorite of mine, The Bold Type, about 3 best friends in their 20's who work for a fashion magazine in NYC.

What's your go-to for comfort viewing?

And what are your favorite mood lifters?