COVID Vaccine Experience of ME/CFS Patients

[PLEASE NOTE: THIS POST IS ONLY FOR THOSE WITH ME/CFS, AS IT REFERENCES THE SPECIFIC IMMUNE DYSFUNCTION OF THIS DISEASE. IT IS NOT RELEVANT TO THE GENERAL POPULATION.]

Because a primary characteristic of ME/CFS is a dysfunctional immune system, many of us have been concerned about the impacts of getting the COVID vaccine. You can read more about the specific immune dysfunction of ME/CFS, the way vaccines (and specifically the COVID vaccines) work, and more in my earlier post, ME/CFS and the COVID-19 Vaccines. 

I wrote that back in February. I was concerned for myself because I began a severe relapse of my ME/CFS in March 2020 and was still not yet back to my normal baseline, plus some recent lab tests had shown significant immune dysfunction. In that earlier post, I explain what factors I was considering and some resources for you, too.

Now, it's three months later. I have not yet gotten my COVID vaccine, but two new developments have occurred: just in the past two weeks, I finally seem to have returned to my "normal" baseline after a 14+ month relapse and my ME/CFS specialist ran extensive additional immune testing and gave me the OK to go ahead and get the vaccine. The other factor is that I have been closely following the experience of other patients with ME/CFS, and that's what I want to share with you today.

 

ME/CFS and the COVID Vaccines Facebook Group

I mentioned this group in my earlier post. You can find it here on Facebook. The group now has over 6000 members, and many of them have already been vaccinated and have shared their experience in the group. You can click the Join button to join the group (it's only for those with ME/CFS) and peruse the posts in the Discussion area. There is also a search function (the magnifying glass icon) if you are looking for something specific. if you have already been vaccinated, please share your experiences in the group (use v. or vax or shot or jab rather than "vaccine" when posting in the group as Facebook is clamping down on some vaccine discussions).

My impressions after being in this group for several months are that there is a wide range of experience with the vaccines, from those who had a "normal" reaction, like any healthy person would, with some symptoms that subside within days, to those who have severely relapsed to those who are actually better than they were before the vaccine! Yes, that's right - some small percentage of ME/CFS (and long-COVID) patients improve after the vaccine. Personally, I find this anecdotal information helpful but sometimes a bit scary. As you might expect, those who have a mild response usually post once or twice, but those who go into a severe ME/CFS relapse post-vaccine that lasts for a long time usually post multiple updates (which are much appreciated). These stories of long-term relapse are frightening for me, though I greatly appreciate the people willing to share their experiences, and they do get some emotional support through the group.

The Coronavirus Vaccine Side Effects Poll for ME/CFS and Fibromyalgia

Personally, being a very analytical person, I like data! The Health Rising website (a reliable source of information for those with ME/CFS and fibro) started a comprehensive poll back in January, which now contains responses from about 4000 patients! This is enough data to make it statistically significant.

You can find the poll at this link.  If you have finished your vaccine and have either returned to your normal baseline or or at least 1 month past your last shot, please fill out their simple survey so you can help other patients. For everyone else, you can see the current results of the poll (constantly updated), if you scroll to the bottom of that post and click on "View Results."

There is a lot of information to see there, including severity of illness, side effects post-vaccine (for each of the available vaccines), and how long until the patient returned to whatever their "normal" baseline is.

I have been focused on one piece of data for each vaccine: the % of patients who are still relapsed (not back to normal baseline) after 30 days. For me personally, that's the key piece of information. I expect to "crash" after the vaccine, possibly even for 2-3 weeks, and I can deal with that. My biggest concern all along, given my recent 14-month relapse and my immune problems, is that the vaccine might trigger another long-lasting relapse. 

As of today, here are the % of patients still relapsed more than 30 days after their last dose of vaccine:

Pfizer: 12%

Moderna: 10%

AstraZeneca: 14%

Johnson & Johnson: 14%

Again, that's the piece of information I was most interested in, but you can see the full poll results at the link (scroll down and click on "View Results.").

Health Rising has added an additional poll: a poll for those who improved after their COVID vaccine (within this post that also includes advice from experts). Again, you can respond to the poll if you improved after your vaccine or View the Results.

Also, this Health Rising post from March provides a summary of the poll results at that point, pluys an additional poll for those with severe ME/CFS who have had the COVID vaccine (scroll down to get to the poll).

There is also a UK-specific poll at the ME Association website. It's a more simplistic poll, with just a single question, but it shows 7% of respondents (of about 2000) still relapsed more than a week after their last shot.

Based on this information, my latest lab results, conversations with my doctor, and the end of my long relapse, I am going to get my vaccine next week, opting for the Moderna, as it has the lowest occurrence of long-term relapse. But, I am still pretty nervous about it. 10% still seems like a big chance to take after just enduring a 14-month-long relapse! Since my "normal" baseline is actually pretty good, with treatments, it feels like a big risk to me. Maybe I'll get lucky and be one of those who actually improves? I'll report back.

I hope this post provides YOU with the factual information you need to make your own vaccine decision.

Please share your vaccine experiences and/or your considerations in making the decision about the COVID vaccine in the Comments below.

TV Tuesday: Resident Alien

Are you in need of some seriously goofy fun? Maybe a mystery with some sci fi combined with plenty of laughs? We recently finished season one of the SyFy Channel's new show Resident Alien, and we loved every minute of it.

Alan Tudyk plays an alien whose ship crash-lands in the Colorado mountains. He finds an isolated cabin on a lake and takes on the human form of its occupant, Dr. Harry Vanderspeigle (the real Harry is now dead and stored in the freezer). The alien now known as Harry is hoping to pretend to be human and lay low, while he searches the deep fields of snow in the surrounding area for pieces of his ship. That plan falls apart when the local sheriff, played by Corey Reynolds, and his deputy, played by Elizabeth Bowen, come knocking on the door of his cabin. The town doctor was murdered the night before, and they heard that Harry is a doctor visiting from New York, so they enlist his help in performing an autopsy. Harry (the alien) goes along with this and agrees to help out, mainly because he's been watching a lot of Law and Order reruns in the cabin. As the local law enforcement works to solve the case, the town is left without a doctor and asks Harry to step in. Since he needs to blend in and pretend to be human while he continues his search for his ship, Harry agrees. He begins working closely with Asta Twelvetrees, played by Sara Tomko, who works as a nurse in the clinic. Harry also gets to know Asta's best friend, D'Arcy (played by Alice Wetterlund), who tends bar. The longer Harry is in this quiet mountain town, pretending to be human, the more fascinated he becomes with human beings. There is just one problem: there is a little boy in town named Max, played by Judah Prehn, who sees Harry in his real, alien form.

Describing the plot of this show doesn't do it justice. It sounds just plain silly, and ... well, yes, sometimes it is silly! But that's part of its charm. Alan Tudyk, one of our favorite actors from the excellent Suburgatory, is perfect in this unusual role of an alien trying to learn how to be human. The supporting cast is all wonderful as well. This unique show combines a classic murder mystery with small-town drama and a sci fi alien story. It's very funny, but it can also be suspenseful and warm and surprisingly touching at times, too. I know it sounds like an odd combination, but it's all put together just right for a whole lot of fun. This show was one of about a dozen we were following at once, and it was one of our favorites. We both always looked forward to seeing the next episode and are glad it looks like there will be a season two!

Resident Alien is a SyFy Channel show, so it is available on cable (we watched it On Demand) and probably on satellite, too. It is also available on Hulu and Peacock services or on Amazon for $1.99 an episode or $16.99 for the 10-episode season.

 

TV Tuesday: The United States of Tara

We are a bit late to the party, but we've just discovered the outstanding drama-comedy of The United States of Tara, a half-hour show that originally ran on Showtime from 2009-2011. We are enjoying this wholly original series.

Toni Collette plays Tara, a wife and mother with Dissociative Identity Disorder aka Multiple Personality Disorder. Stress can trigger her to morph from her normal, ordinary mom persona into one of three other distinct personalities: T, a 16-year-old with a wild streak; Alice, a buttoned-up, perfect 50's-type housewife, complete with high-heeled pumps and frilly aprons; and Buck, a rough male Vietnam vet. Tara has no control over when or where one of the other personalities takes over her body and often doesn't remember what happened while she was one of the others. She lives with her long-suffering but loving husband, Max (played by John Corbett); older teen daughter, Kate (played by Brie Larson); and younger teen son, Marshall (played by Keir Gilchrist, talented star of Atypical). Tara's younger sister, Charmaine, played by Rosemary DeWitt, is often around, too. They are an ordinary suburban family, except when they aren't. Though Tara's alter egos often wreak havoc in their lives, sometimes they are just there for awhile, and the family has gotten used to the sudden shifts. T borrows Kate's clothes, Alice loves to bake, and Buck is an excellent bowler. The family weathers the usual ups and downs, with Tara's unexpected personality shifts thrown into the mix. She suspects there is some forgotten trauma behind the disorder, and she sometimes tries therapy and other approaches to getting better, but much of the time, this is just normal life for this very unusual family.

OK, I know this sounds like a very weird premise ... but it works. In fact, it works extraordinarily well. All of the actors on the show are excellent and work very well together, but Toni Collette's performance, playing four very distinct personalities, is outstanding. In fact, she won an Emmy, a Golden Globe, and several other awards for this role. She and the rest of the cast manage to capture both the ordinariness of their life and the insanity of it. Though Tara is at the center of it, the show is also about a regular family living this extraordinary life: Kate's issues with boyfriends and jobs, Marshall's struggles with his sexual orientation, and Max's attempts to hold the family together and earn a living. And Tara is actually a great mom, when she isn't punching Kate's boyfriend as Buck or embarrassing the kids as T! The show is warm and engaging and both moving and very funny at times. We just started season 2 (of 3) and are enjoying it.

The United States of Tara originally aired on Showtime, so is still available on their platform. It is now also currently available on Hulu. You can also purchase episodes for $1.99 or seasons for $10.99 at this link on Amazon or start a 7-day free subscription to Showtime there.

 

New ME/CFS Testing & Treatment Guidelines

Great news! The U.S. ME/CFS Clinician Coalition has published two more excellent documents to provide guidance to doctors diagnosing and treating ME/CFS patients. Here are some details and links to both the new and older documents:

Who Are They?

The U.S. ME/CFS Clinician Coalition is a group of 21 top experts in myalgic encephalomyelitis and chronic fatigue syndrome in the U.S. Individually, these doctors have treated thousands of patients with ME/CFS using the best and latest research (and often participating in research and running studies themselves) for dozens of years. Together, they were working collectively to exchange information and stay up-to-date even before this group was officially formed in 2018. Some of them served on the committee to develop new diagnostic criteria. You can read more about the group at their website.

Some, but not all, of the doctors in the coalition still see patients. They are included in my page on Finding a Doctor, which also includes lists of top ME/CFS experts around the world, second-tier doctors who treat certain aspects of ME/CFS, links to doctor databases, and tips on finding a local primary care doctor who can help you.

What Are the New Guidelines Just Published?

The Clinician Coalition just this week released two new documents to help doctors trying to diagnose and treat ME/CFS patients. These are documents that YOU can share with your own doctor:

Testing Recommendations for Suspected ME/CFS - this comprehensive list not only helps doctors to diagnose ME/CFS and rule out other possible causes, but it also provides tests to help doctors better characterize this particular patient's ME/CFS, like which kinds of infections are present and whether they have Orthostatic Intolerance (OI).

ME/CFS Treatment Recommendations - this 9-page document includes a fairly complete list, organized by aspects of the disease, of medications, supplements, and other treatment approaches. They've included proven treatments that have helped many patients, as well as options for the patients who might not respond typically. Note that while the document does mention pacing toward the end, it does NOT mention Graded Exercise Therapy or Cognitive Behavorial Therapy!

What Else Is Available from the Clinician Coalition?

So much!! Their website has a treasure trove of information for patients and doctors. Check out their Resources page for reports and documents from them and from other sources, including more testing and treatment advice, latest reports on ME/CFS, more on common aspects/comorbidities like Orthostatic Intolerance and Ehlers-Danlos Syndrome, disability info, and more.

They also published a statement in October 2020, Post-COVID "Long Haulers" and ME/CFS, that explains how most cases of COVID long-haulers probably have ME/CFS and the history behind various infections, including SARS infections like COVID, triggering ME/CFS.

 

All of this is excellent, scientifically-based information that you can share with your doctor(s) to help them better understand, diagnose, and treat ME/CFS (including cases of "long COVID"). Our medical professionals are sadly lacking in training and up-to-date information on ME/CFS, so share this freely!

TV Tuesday: Debris

Most of the TV shows we're enjoying right now are returns of old favorites like The Rookie, Good Girls, and New Amsterdam, but we've also gotten into a new sci fi series that just debuted this spring, Debris.

British agent Finola Jones, played by Riann Steele, and American agent Bryan Beneventi, played by Jonathan Tucker, are working together on an international, top-secret mission. Months ago, an alien spacecraft exploded over Earth, and the debris has been raining down on the planet ever since. Its alien technology does strange things and has horrible effects on the humans that come into contact with it. Bryan and Finola travel all over the U.S., going wherever a piece of debris has been found, no matter how small, to collect it and document the strange effects it causes ... and hopefully, to keep the people nearby from being harmed. Of course, there are bad guys, a group called INFLUX, that want to get their hands on the technology, too, led by the nefarious, bearded Anson Ash (who is played by--no kidding--Scroobius Pip). As the two investigators race against the clock to try to collect the pieces before they can do harm (or get scooped up by INFLUX), the mysteries deepen. In each location, the effects of the debris get stranger and stranger, while well above their paygrades, different countries are scrambling to get an advantage in spite of their apparent cooperation, and INFLUX is experimenting with their own violent uses of the technology.

We have watched seven episodes so far and are enjoying this sci fi-mystery-thriller. The two main characters are likeable, though each has his or her own secrets and past. The alien technology is certainly very strange and intriguing, and it's impossible to predict what will happen in each episode. We have seen lots of this type of sci fi-mystery-thriller, and we always enjoy them, even though they don't always last very long (my husband's theory is that the writers don't know what to do next with the weird things they have thought up!). I'm hoping this one will stick around for a while because its mysteries are interesting and its plotlines suspenseful.

Debris is currently airing on Mondays on NBC and is available the next day on Peacock (free). It is also available on Hulu.

If you enjoy this kind of sci fi-mystery-thriller show, you might also consider some others we've enjoyed (my reviews, trailers, and info on how to watch at the links):  

• Manifest (currently in its 3rd season on NBC/Peacock/Hulu)
• The Crossing (1 season - ABC, Amazon, Apple TV)
• Hanna (Amazon)
• Orphan Black (best of them all! BBC America, on Amazon)
• Stitchers (Freeform, Hulu)
  
• Wayward Pines (FOX, Hulu)
• More sci fi reviews on my TV Review page.
  

 

Movie Monday: Moxie

I spent a couple of nights down at the beach last week, on a little solo getaway, which meant plenty of reading, writing time, and ... watching movies my husband wouldn't be interested in! I enjoyed Set It Up, a rom-com on Netflix, but it wasn't fabulous, just a fun, light rom-com. My first night, though, I watched Moxie, a mother-daughter, coming-of-age movie (also on Netflix) that I really loved.

Amy Poehler plays Lisa, single mom to sixteen-year-old Vivian, played by Hadley Robinson. Lisa often jokes about her "misspent youth" as a rebel, protesting and getting involved in feminist causes, and Viv mostly just rolls her eyes. She's a quiet, shy girl who's had the same best friend, Claudia (played by Lauren Tsai), since they were tots. Viv's awakening begins when a new girl starts at their very traditional high school. Lucy, played by Alycia Pascual-Pena, dares to speak up in class, about how their English curriculum includes only "old white guys," and she refuses to put up with the abuse from Mitchell, played by Patrick Schwarzenegger, that all the other girls take for granted. Mitchell is the school's star football player and is pretty much given carte blanche for his bad behavior since he is so charming to the adults running the school. Principal Shelly, played by Marcia Gay Harden, is particularly enraptured by Mitchell and has a very traditional "boys will be boys" attitude. Seeing Lucy speak up makes Viv start to think about the double standards and what she and the other girls at school have put up with for so long. She digs out the old suitcase with all her mom's counter-culture materials, and her imagination is sparked about how she can maybe make a difference. She starts a feminist 'zine that sparks a revolution at her school, all the while helping her to figure out who she is and what she believes in.

I loved this movie! It made me realize that while light, fun movies are OK, I prefer mine with a core of meaning and consequence. The acting is all outstanding in this film, including Marcia Gay Harden, who you will love to hate. Amy Poehler is not the center of this movie, nor does she play a typically comedic part, but she is great in the quiet role of Viv's mom.The young actors playing the students at Viv's school all bring depth to their characters, moving well beyond the typical stereotypes (in fact, outright busting many of those stereotypes). The writing was good, too. The movie has a serious core and addresses important issues, but it also has some romance and plenty of humor. All in all, it's the whole package: a fun, uplifting movie with heart and a powerful message. I thoroughly enjoyed it and had a huge smile on my face at the end. You'll be cheering for Viv and her friends, too!

Moxie is a Netflix original, so it is available exclusively on the streaming service.

Check out the trailer for a preview of the fun, inspiring tone:

 

Weekly Inspiration: Give Me a Break!

With apologies to the familiar McDonald's jingle: "You deserve a break today!"

My Solo Getaway

I just came back from a mini solo getaway to the beach (about 90 minutes from here), which I sorely needed. In addition to the pandemic, which has affected everyone everywhere, I'm in month #13 of a bad relapse (improving now but slowly) so have been far more limited than usual. I've also been totally overwhelmed by the stress of some major issues with extended family, which have been affecting my sleep just when I need it the most. And, there's all the usual stuff: juggling my blogs, freelance writing, time with my husband, household maintenance, and all the mind-boggling medical issues  (my current regimen requires taking medications and supplements at 10 different times of day!).

So much to do and remember! I need a break!

 

Then, there's the simple fact of just getting sick of the same old routine, day after day, which my relapse and the pandemic have multiplied. My husband and I had tentative plans to get our camper out for the first time this past week, but that fell through when his work schedule interfered. We are severely limited right now because we (and especially he) are taking care of his 95-year-old father, who now requires daily hands-on assistance. So, we can only go away for a day and a half, mid-week when his aide is visiting, and less than an hour from home. We are looking for an Assisted Living facility for him, but we weren't going to move him until visitors were allowed. So, yeah, there's that, too!

Anyway, all of this stress has been growing, so when our camping trip got cancelled, I decided I still needed a break. I planned a short solo getaway to the beach, with the help of a generous friend who lent their condo, which was empty last week.

Stormy skies ... but at least I'm at the beach!

 

This was just what I needed (though over far too soon!). I was completely alone for about two days, with no one to be responsible for but myself. I ate when and what I wanted (very little cooking; mostly takeout!), kept my own schedule, and enjoyed the silence. Though the weather forecast looked pretty bad when I left, I ended up having about 24 hours of sunshine and clear skies, so I drove to the beach (just a few miles away from the condo) three times: first for a walk with a friend, then (because the walk wore me out) just to sit with my book and enjoy the sounds of waves and seagulls and the gorgeous views. In the evening, I ate my takeout in front of the TV and watched movies my husband wouldn't have been interested in. Both the time alone and the change of scenery really helped me. In fact, I realized as I returned home that I was beginning to obsess over the family issue again and that I hadn't thought of it while I was away. My mini getaway provided both a physical and mental break for me.

Ahhh, that's better! Relaxing with a book in the sunshine.

 

It's not always possible to physically get away like I did this week, either due to responsibilities or the limitations of your illness (I never could have managed this during the worst of my relapse last year). But, you can still find ways to give yourself a break, even right at home.

A ride in my convertible to the nature center a few miles away provides a respite!

A Change of Scenery

Even if you are housebound, you can give yourself a break from routine with a simple change of scenery: 

• Lie on the couch in the seldom-used living room instead of your usual spot in the family room. 
• Create a comfy nest for yourself somewhere. Back when three of us were all sick at the same time, my youngest son liked to do this. Our couches were all taken up, so he'd pile a bunch of pillows and blankets on the floor (maybe even with a spare mattress) and get cozy in his nest. 
• Lie outside (see below).
• Move to a spot where you can look out of the window.
• If you are up to it, drive or ride along as a passenger while a friend or family member drives. You don't need a specific destination--sometimes, it's just nice to get out.

 

Lying outside on our deck lifts my spirits!

  

Get Outside

Spending time in nature is a wonderful way to rejuvenate and "get away," even if you are still home. My article,The Restorative Power of Nature, written for ProHealth and updated as a chapter in my book, details the health benefits of spending time outdoors with lots of practical ideas for those with chronic illnesses. Scientific studies show that nature has amazing benefits for both physical and mental health. So, try some of these ideas for a mini outdoor getaway:

• Sit or lie outside in your yard, garden, deck, or even on a balcony. I like my anti-gravity. bungee chair and often lie in it out on our deck (or in the screened porch if the bugs are out). Just being away from the TV and other indoor noise helps.
• Tune in to the natural world. Once outside, look, listen, and smell! Look up at the sky and watch the clouds. Listen to the birdsong (which was there all along, even if you don't normally notice it) and the wind in the trees. Smell the spring blooms or the air after a rainstorm. Look around to notice the signs of the season and what has changed since the last time you were out there.
• If you can manage it, ask a friend or family member to take you for a drive on backroads, into the country or maybe to a local park. Put the windows down, smell the air, and enjoy the change of scenery.
• If you are able to walk without crashing (for me, treating OI was the key to improving my exercise tolerance), try walking in a park or other natural area instead of your usual neighborhood walk. Though, even in your own familiar neighborhood, you can focus more on your surroundings and observe what is going on in the natural world. I love to see what new flowers and trees are starting to bloom (or turning color in the fall).
•  If you are severely limited and bedridden, ask someone to open the window on a nice day so you can listen to, observe, and even smell nature. Studies show that even looking at pictures of nature has beneficial effects! Try a nature documentary or a slideshow of photos of National Parks.

 

Takeout from our favorite Louisiana restaurant is a nice treat!

 

Take a Break from Routine

This past year, during this bad relapse, I have learned that even a simple break from my usual routine can help to lift my spirits. Certain things, of course, can't be changed: my bedtime, my daily nap, and all those meds and supplements, timed just right! But, there are other things that my husband and I enjoy as a change of pace:

• Order takeout from a favorite place, as a special treat.
• If you are able to indulge a bit outside of your usual dietary restrictions, then do that once in a while! I normally avoid grains, so a grilled Reuben sandwich or a po'boy from our favorite New Orleans restaurant is a huge treat for me. Similarly, I normally avoid dairy but will occasionally indulge in a small sugar-free sundae. It might not seem like much to healthy people, but these rare splurges bring me joy and a break from my routine.
• If you normally eat at the kitchen table, indulge in dinner in front of the TV with a favorite show. Or, if you always eat in front of the TV, try eating in the dining room on the "good" dishes with candlelight.
• Take a "day off." Even when I am not feeling well, I am usually trying to be productive, even attempting to clear my e-mail inbox while lying on the couch, for example. There are two ways that I take a day off: if I am really feeling awful, it is a huge relief to give in, admit I won't get anything done that day, go back to bed, and lose myself in a good book or TV show. Alternatively, like with this week, it can give me a big boost to intentionally take a "day off" when I am not badly crashed. I did that on Tuesday, the day I drove to the beach. I did not even attempt to do anything productive, just enjoyed the beach, read, and watched a movie (and left my laptop closed).
• If you always watch the same TV shows, try something new that everyone's been talking about. Or choose a movie that's different than what you usually watch. Or read or listen to a book in a different genre than you usually read. Anything different can provide a nice change of pace.
• If you're feeling isolated, surprise an old friend with a phone call, video call, or even text message. It can provide a huge emotional boost to reconnect and interact with a loved one, even virtually.
  

I bet that YOU need a break today! Hopefully, those ideas can get you started. 

What do you do when you get sick of the same old routine and need a break? Share your own ideas in the comments below.

How To Nap

For many of us with ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome) or other chronic illnesses, a daily nap (or at least an occasional nap) is a fact of life. We can't create enough energy in our cells overnight to keep us going all day and need to recharge partway through the day. As I was settling down to nap yesterday, with all my various routines in place, I realized that my many years of experience as a champion napper might help others better learn how to get that mid-day rest they need.

NOTE: Sleeping at night is a different story, due to the sleep dysfunction of ME/CFS, which is caused by endocrine (hormone) dysfunction. This can be treated (without sedatives); my son and I have both had solid, natural, refreshing sleep 8-10 hours a night for over 15 years now. For details on how to correct sleep dysfunction, see my blog post and my article for ProHealth (especially good for sharing with doctors). That said, all of the tips below will help with nighttime sleep, too; they just won't be enough on their own to restore the deep stages of sleep you are missing.

I began taking a daily nap--every day, no exceptions--shortly after my diagnosis, a little over a year after first becoming ill in 2002. I read a memoir/nonfiction book, Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS by Gregg Charles Fisher (with contributions from several doctors). I had spent a year looking for answers and finally had a name for the disease that had stopped me in my tracks. This book brought me to tears, finally recognizing my experiences in someone else's words. Fisher does a great job of describing his own (and his wife's) personal experiences, but he also talks about the science and medicine behind the disease (what was known at the time) and practical tips for living with it. Just learning about exertion intolerance/post-exertional malaise (PEM) changed my life.

One of the concepts Fisher talks about in the book that was eye-opening to me was the idea of proactive rest, of resting before you crashed. He describes how learning to rest before he completely runs out of energy greatly improved his quality of life. Since my first year of ME/CFS had been marked by huge ups and downs and the pattern of feeling better, getting active, then crashing badly again, I realized this could really help me. That's when I began napping every day.

So, with 18 years of daily napping under my belt, here are my hard-earned tips for a good, restful nap:

REALLY Rest

I found out early on that lying on the couch, reading, or watching TV did not help my body to recover for the rest of the day. I had to truly rest, in bed, with my eyes closed. In fact, as you'll see below, the preparation for a nap will eventually become a habit that will help to tell your body that it's time to shut down for a bit.

Make the Room Dark, Cool, and Comfortable

Experts and doctors have proven that 60-67 degrees F is the ideal temperature for solid, refreshing sleep, so make sure your room is dark and cool at naptime. How do you do that at mid-day? I nap in my bedroom and close our room-darkening blinds (room-darkening, insulated curtains work well in my son's room). In the summer, it is hard to cool the 2nd floor, where our bedroom is, enough for a daytime nap, so I turn the air-conditioning down temporarily and turn on a fan. Our son (the fan expert!) likes these little turbo fans and really loved this taller multi-fan unit for maximum air circulation when he was in college. When it's really hot out, and our bedroom is just too warm, I nap in our finished basement, which is always cool (and dark). The cool temperatures really help.

Like anyone, when it's not too hot, I like my bed with plenty of soft pillows and comfy blankets. Like many with ME/CFS, I have trouble regulating my temperature and tend to be too hot a lot of the time, so layered blankets that can be adjusted are important.

Help Your Body Relax

Every afternoon before my nap, I take two valerian/lemon balm tablets and two magnesium capsules. Valerian is an herb with mild sedative properties, like chamomile; it just relaxes you and makes you a bit sleepy. In fact, chamomile is another great alternative, especially a warm cup of chamomile tea before your nap. We like Celestial Seasonings Sleepytime Tea. But, since I already have trouble with having to pee every 30 minutes (part of Orthostatic Intolerance, our bodies can't hold onto fluids), I just take the valerian tablets. Warning: valerian is very stinky! That's why I avoid the regular capsules and like these coated tablets, which also contain lemon balm, another calming herb.

As for magnesium, people with ME/CFS need a lot of it anyway; it helps with neurological symptoms, pain, headaches, and cognitive function. It also helps with sleep. However, you have to choose the right types. The kinds usually sold at the drugstore--magnesium oxide and magnesium citrate--are poorly absorbed and cause diarrhea. In fact, magnesium citrate is often used for colonoscopy prep! So, yeah, skip those or you'll spend naptime in the bathroom. Instead, opt for types that are well-absorbed, like magnesium malate, magnesium glycinate, and magnesium l-threonate. That last one is the only type of magnesium that crosses the blood-brain barrier (i.e. gets into the brain), so it is especially good for cognitive function and neurological issues--it even helps with dementia.

These gentle herbs and magnesium just help me to relax and get sleepy. For me, they wear off pretty quickly (I usually read for 20-30 minutes and nap for 45-60 min), but you can experiment to see how they work for you. They can help make you sleepy before bed at night, too.

Wear Warm Socks

OK, this one sounds weird, but hear me out. I read a study (it's science!) that keeping the feet warm helps you to fall asleep faster and sleep more soundly. I tried it and it works! Now, every afternoon before I get into bed (except on the hottest days), I put on soft, warm, fuzzy socks (they make them for men, too); I just pull them on over my regular socks. I usually read at the start of my nap, and within 15 minutes, I start to get really sleepy. It works!

Sensory Deprivation

Another way to make things dark is to wear an eye mask of some sort. My husband got me a nice eye mask/ear plug set for travel for Christmas, and it's super-comfy (I was using a very old freebie I got on an overseas trip about 15 years ago that had no elastic left in it!). However, when I'm at home and in bed, I prefer not to have that strap around my head, so I just use a men's size soft, dark sock. I just "borrowed" one from my husband, but this is the kind I use. Since I sleep on my side, I just lay that over my eyes, with the leg part over my head; it's soft, comfortable, and not at all restrictive. My mom likes this kind of eye pillow, filled with lavender (another calming herb).

I struggled for years with traditional foam earplugs. I know they work well for some people, but I have small ears, and I can never get them situated just right. Then, I read about silicone earplugs: life-changing! They are little blobs of silicone that come in a case (usually a dozen). You take one out, roll in around in your fingers and mold it into your ear so that it fits perfectly. Plus, the silicone is much better at reducing noise than the old foam-style. Whether you are blocking out lawn mowers and garbage trucks at home, ambient noise while traveling, or a snoring partner, silicone ear plugs work really well.

Settle Down

With all that prep in place, now it's time to help your body relax and settle down to get ready to rest. For me, that means reading, but you might listen to calming music or an audiobook (probably best to avoid Stephen King at naptime). I darken the room and turn off the lights first and use a headlamp to read: another signal to my body that it's naptime.

This would also be a great time to meditate, in whatever way works for you. I do this after I put my book down and lie down with my eye sock on and my earplug in. You can repeat a calming mantra to yourself; focus on tensing and releasing each muscle in turn, from your toes to your head; or even just focus on slow, deep breathing. Most experts recommend a slow 4-count inhale through the nose, hold for 3-4 seconds, and then a slow exhale. This kind of breathing is often all it takes to send me off to dreamland. I find it also helps to tune in to my senses. Of course, I have covered my eyes and plugged my ears, but sometimes I can still hear rain outside or the fan, and focusing on what I feel (soft pillow, warm feet, comfy bed) helps. There are also some great guided meditations available (choose a short one pre-nap) and loads of apps now, like Calm.

Can't Sleep? That's OK.

Although this routine usually puts me to sleep for about 45-60 minutes (90 minutes if I'm having a bad day), some days, I just can't fall asleep, even though I know I need it. I might have something on my mind or am just feeling restless. 

On those days, I remind myself that if I can't sleep, then simple rest will still do me some good. I continue my "settle down" routines: deep breathing while I count the slow inhale/exhale, meditation, tuning in to what I feel, tensing and releasing muscles. I might end up falling asleep ... or I might not, but at least I had some time in bed, totally relaxed, in the dark and quiet, to allow my body to recharge a bit for the rest of the day.

Wake Up!

A routine can help when your nap is over, too. I usually wake up because I have to pee (again), so that gets me out of bed. After I use the bathroom, I splash cold water on my face and eyes for a few minutes, which helps to revive me. I put my contacts back in and head downstairs for my "after nap meds." With help from our dietician, I arranged my daily supplements so that some of the more-stimulating ones (things that help improve energy) are in the after-nap box. I usually also have a cup of herbal tea with a wakeful flavor/scent, like Celestial Seasonings Lemon Zinger. In the summer, I might have a glass of decaf iced tea with lemon in it.

Finally, it is very important to get some daylight, if possible, to help your body recognize that it is wakeful time again. I don't have the energy for a full walk in the late afternoon (my beta blocker is starting to wear off by then), but I usually walk out to the mailbox or slowly walk around our cul-de-sac, just a little outdoor time to help my body shift out of nap mode. When the weather is nice, I like to sit out on our deck in a reclining chair. Nature and the outdoors are very important to my well-being: just watching the clouds or listening to the birds rejuvenates me. I might bring my laptap out there with me or, on a bad day, my book.

That's how I nap every day! My nap is an essential part of my daily routine. It not only helps to prevent me from overdoing and crashing later, but it recharges me so that I have the energy to write a blog post, make dinner, and enjoy the evening with my family. Without it, I'm a puddle by 3 pm.

And now it's time to make dinner--thank goodness for my nap today!

Movie Monday: Nomadland

A few weeks ago, my husband and I watched Nomadland on Hulu, after it won the Golden Globe for Best Picture (it's now been nominated for 6 Oscars, including Best Picture). It's based on a nonfiction book by Jessica Bruder. We loved this beautiful, gentle film set in a real-life community of travelers.

Fern, played by Frances McDormand, is at loose ends. Her husband died and the company where they had both worked for decades shut down the mine they worked in. Worse, their tiny town of Empire was wholly a company town, and when the mine shut down, the town pretty much did, too, with no jobs left in the remote area of Nevada (this is all real-life true and happened in 2011). Fern has lost her job, her husband, and her town, and can not find a job of any kind locally. So, she outfits an old van for camping/living and sets off on the road. She finds seasonal jobs along the way--working in Amazon distribution centers, helping with harvest at a beet farm, working in National Parks--but the biggest surprise to her is the community she finds on the road. She's not the only one living out of her van and traveling from place to place, finding work where she can; an entire community of people, most of them older like her, is doing the same. She makes friends, and it's hard to say goodbye at the end of a stay, but then she realizes that they will see each other again at the next place or the next. She particularly bonds with a woman named Swankie who has lived this life for years and shows Fern the ropes, and with a man named Dave, played by David Strathairn. She runs into Dave for the second or third time when they are both working summer jobs at Badlands National Park, and then they both get jobs at nearby Wall Drug when the season is over. The two of them connect but a series of events leads them each to make some decisions about their lives.

While this movie begins with the reality of the economic devastation of the Great Recession and is about people living in poverty, it is a thoughtful, quiet film with lots of joy. The nomads themselves find joy in simple, everyday moments, like community campfires, helping each other, and dancing. The story is not only based on real-life people who live this way, but all of the actors in the film, except McDormand and Strathairn, are the real people living this life, playing themselves in the film. McDormand has also talked about other ways that she brought realism to her role, like including some of her own treasured items and photos in the van. Here's a great article from PBS about the real-world nomads, if you are interested in the background.

Nomadland is also a road trip movie, which we especially loved. We used to take 3-week-long road trips every summer with our sons, towing our own small camper, cross-country, and in the film, Fern visits places that we've been to and loved. We have camped--many times--in the exact campground at Badlands National Park where Fern works and visited Wall Drug many times as well. The familiar sights, especially after 18 months with no travel at all, were a wonderful balm for us. True, Fern's life (or that of any of the nomads) isn't easy, but they are kind and upbeat and making the best of things. Many of them now enjoy their lives of freedom and wouldn't want things any other way. We absolutely loved this gentle, thoughtful, joyful movie about an invisible segment of society. It deserves those awards it's winning!

We watched Nomadland on Hulu. It is also playing in theaters, where they are open.

Movie Monday: Palmer

Feeling blue and looking for a movie Saturday night, I was disappointed to find that News of the World had to be purchased (even though we got Apple TV for a year free with my iPhone purchase last year), so we opted for another movie I've been wanting to watch on that service, Palmer, an Apple original. This turned out to be a perfect choice. I laughed, I cried (first sad, then happy tears), and it was wonderfully poignant and uplifting.

Justin Timberlake plays Eddie Palmer, a guy who has just been released after twelve years in prison. He gets on a bus and returns to his small, rural hometown in Louisiana. His grandma, Vivian (played by June Squibb), welcomes him home, where she has kept his old room and has it all ready for him. She is kind and loving but firm, insisting that he will go to church with her on Sundays if he lives there. Eddie, who likes to be called Palmer, searches all over town (which is quite economically depressed) for a job but can't get hired. When he applies at the local school for an opening for an assistant janitor, the principal turns him down at first, on the basis of his felony, but when he realizes he's Vivian's grandson and attended church with him on Sunday, he hires him. His boss, fellow Janitor Sibs, played by Lance E. Nichols, is also willing to give him a chance and reserves judgement. Vivian has a next-door neighbor who lives on a trailer on her land, Shelly, played by Juno Temple. Shelly is a mess, drug-addicted and involved with a cruel, violent man, but she loves her sweet son named Sam, played by Ryder Allen. Sam is a different kind of kid, a boy who loves pretty things, playing with dolls, and princesses, but Vivian accepts him as he is without question. Whenever Shelly disappears (which is often), Sam stays with Vivian. Palmer isn't so sure about this weird kid, but he follows his grandma's lead and is kind to him. Gradually, slowly, Palmer and Sam get to know each other and care about each other, especially after a tragedy throws them together. They provide the caring relationship that each is missing and help to heal each other.

My husband and I both loved this movie. I had no idea Timberlake could act like this! He is excellent in this role, with a full range of complex emotions. Ryder is also wonderful as Sam, sweet and adorable and happy with himself, often unaware of how others see him. The supporting cast is great, too, and the writing is excellent. Although there are plenty of sad, even terrible, elements in Palmer's and Sam's lives, there is plenty of humor throughout the movie and warmth, too. It's the perfect mix of drama, comedy, trauma, and healing that left me laughing often and crying, too. I love when a story can make me feel like that. It's a wonderful rollercoaster ride, with some engaging characters, and I hated to say good-bye to Palmer and Sam, but I think they will both be OK now.

Palmer is an Apple original. You can get a free year of Apple TV with the purchase of any Apple device, so be sure to take advantage of that offer, if you've recently purchased any. We also enjoyed the Apple movie On the Rocks, and the TV shows The Morning Show and Home Before Dark, one of our favorites, and we are currently watching For All Mankind, which is also excellent.

Just rewatching the trailer almost brought me to tears - you don't want to miss this one!

 

News from Our House: Treatment Progress & More

I thought it was time for another update, since it's been almost a month already since my last one! You can look back at that post, News from Our House: Tests, Treatments & Improvement! or, if you prefer, watch the video summary, for more details on my year-long relapse, my quest for answers, and some of the new treatments I'm trying. In brief, I found out that my Lyme disease was badly flared up and not at all under control, as I'd assumed. As a result, a bunch of old viruses were reactivated, and my immune function was pretty bad, with super-low IgM and CD57 (again, details in that earlier post).

Treatment Progress So Far

So, I was a little optimistic at the end of that last update post when I said I was back to my "normal" baseline from before my year-long relapse. I'm definitely feeling much better and able to do a lot more than I have for the previous 11 months, but it's not consistent yet. I am having far more good days than this past year but still some very low-energy, achy days in between, too. Here's what I have tried so far and what's working:

Lyme Treatments:

As I mentioned in that last post, I immediately began to feel better just from increasing my existing Lyme treatments (a combination of A-L Complex (Byron White protocol) and Samento). The Lyme specialist pointed out that I was not actually at the maximum dose of either one (a surprise to me!), so I worked my dose of A-L Complex up from 15 drops twice a day to 20 drops twice a day. And I gradually increased my dose of Samento from 15 drops twice a day to 30 drops twice a day. I began to feel better almost immediately, just from these two small adjustments to what I was already doing! Again, this was a huge surprise to me because I didn't have any of my obvious Lyme symptoms (for me, knee pain and nausea) on the lower doses. I was "just" exhausted, had no energy, and had flu-like aches, all of which I associate more with my ME/CFS. That's another lesson in how interrelated all of this is; the infections behind the scenes are a big part of ME/CFS.

I also started a new Lyme treatment that I'd read about in a Johns Hopkins study, Japanese Knotweed. The study found that this herb--and several others--were more effective than doxycycline and other prescription antibiotics against Lyme in the lab. I started to feel better within about a week of starting it and have been gradually working up my dose. Earlier this week, I was up to 4 capsules in the morning, 1 in the afternoon, and 4 in the evening (working up to 4, 4, and 4) when I began to run out. Oops! I had to reduce my dose the past 36 hours; I'm hoping my new bottle arrives from Amazon before my evening dose! Each time I increase the dose, I experience a Herx reaction (temporary worsening of symptoms that indicates the treatment is working to kill off the pathogens) which usually presents as worsened fatigue, no energy, and sometimes mild aches. That tends to last for 1-3 days, so I wait until I feel good for a couple of days in a row before increasing the dose again. Hence, the ups and downs with good days and bad days!

Immune Treatments

These are not going as well so far! I started with Mega Mucosa, which is an immunoglobulin complex, with some other ingredients (you can read the label at the link). I know I need this because my IgM is so low (which means I'm not making antibodies to new infections). Unfortunately, it upset my stomach, caused diarrhea, and resulted in severe fatigue. I gave up on it after a week and check in with the Lyme specialist. She suggested trying it again but starting with a very low dose and slowly working up, which is excellent advice, but I have put it on the back burner for now.

Once I get my dose of Japanese Knotweed up and steady again, I'm going to try adding (slowly and gradually!) Transfer Factor Multi-Immune (we buy it through our practitioner's office). Eventually, I will also try SBI Protect, but I am putting it off since it is also an immunoglobulin supplement, like Mega Mucosa; I'm hoping if I can first get the infections better controlled, perhaps I won't react so badly to the immunoglobulin treatments.

NOTE that my son and I both already take low-dose naltrexone, daily glutathione nasal spray, and inosine, which all help to normalize the immune system and have improved both of our conditions immensely and improved exercise tolerance. You can read about all three treatments (all inexpensive and easily accessible) here.

Treating Other Infections

As I described in that earlier post, my tests showed a bunch of reactivated viruses. No big surprise to see one or two in anyone with ME/CFS, but that many all reactivated at once is unusual for me! I already take several herbal antivirals daily: olive leaf extract, monolaurin, and emulsified oil of oregano, and I had already increased my dose of olive leaf to 1500 mg twice a day. The Lyme specialist  (who ran the tests) suggested I also add in L-lysine, which is especially good against herpes-family viruses (very common in those with ME/CFS). We've taken this before and still had some, so that's an easy one. I've tried not to change too many things at once, but in between dosage changes of the Japanese Knotweed last week, I added in L-lysine, first one capsule a day and now 1 capsule twice a day (working up to 2 capsules twice a day).

New on the Blog and on YouTube

My big news recently is that I started a YouTube channel about a month ago! This is something I've wanted to do for a while, both in order to connect with more people and to provide an alternative for those with chronic illness who might have trouble reading blog posts but can manage to watch (or even just listen) to a video. The channel is for both of my blogs, so it includes videos about books and reading, as well as videos about living with chronic illness. Sometimes, I will record videos to go with blog posts and other times, the videos will stand on their own. Here are the three chronic illness videos I have posted so far:

• Rachel Horton, blogger and health coach interviews me about ME/CFS, living with chronic illness, and the pandemic - this was a warm, casual conversation between Rachel and I (and the start of a great friendship!), so it feels like listening in on two friends. Feel alone and want to be around people who "get it"? This is the video for you! 
• ME/CFS and Lyme: Tests, Treatments, and Improvement after a Year-Long Crash - this is the video I mentioned that is a summary of my last update post.
• 5 Inspiring Books for Those with Chronic Illness - this one parallels this week's Weekly Inspiration post, all about the books that have most supported, helped, and inspired me in my 19 years with chronic illness.

I am still in the beginning stages here, learning all about YouTube, video editing, and more, so please tell me what kinds of videos you'd like to see!

Here on the blog, it's been a while since I've recapped my posts, so here are my main posts since the beginning of the year, not counting reviews (see below):

Weekly Inspiration: Winter Boosts

My Progress in 2020 and Goals for 2021

Weekly Inspiration: Winter Celebrations

Lyme Disease News: Testing and Treatment

News from Our House: Tests, Treatments & Improvement!

Weekly Inspiration: 5 Inspiring Books for Those with Chronic Illness

 

What We've Been Watching and Reading 

Again, it's been a while since an update, so there's a lot of fun stuff to report on! 

We watched one of our favorite movies in years on New Year's Eve, The Peanut Butter Falcon, which was uplifting, heartwarming, and very funny. Highly recommended by both of us (currently on Hulu and Amazon Prime). You can read my full review and watch the wonderful trailer at that link.

We also watched three other funny movies (all with heart and warmth!): 

• Grandma, starring Lily Tomlin and Julia Garner, so you know it's good!
• Blow the Man Down, a dark comedy about murder and the sinister underbelly in a quiet Maine fishing village. A bit darker but still amusing.
• On the Rocks, starring Bill Murray and Rashida Jones (another top-notch pairing!), a warm and funny drama about marriage and a father-daughter relationship. Lots of fun.

We've seen some great TV this winter, too!

I think our favorite show was Veronica Mars, since we watched the first three seasons, the recent fourth add-on season that takes place 10 years later, and the movie! We enjoyed them all. The series (and movie) stars Kristen Bell as a teen (and later, adult) detective, helping her dad's PI business and trying to solve her best friend's murder. It is definitely dark at times, but if you've seen Kristen Bell in anything, you know she brings a great sense of humor, comedic timing, and snappy dialogue to everything she does. It's well-written, too, with a great supporting cast. Read my full review and watch a trailer of the TV show at the link.

Other TV shows (reviews and trailers at the links) we have been enjoying:

• Home Before Dark is a crime show with a great twist: the detective is a nine-year-old girl! We both loved this intriguing, suspenseful, funny show and can't wait for season two.
• Halt and Catch Fire is another four-season series (now on Netflix) that kept our attention throughout, all about the computer industry from 1983 to 1990, as technology soared from clunky desktop computers with monochrome monitors to laptops to the internet. Great cast and an engaging drama.
• Lakefront Bargain Hunt is our new stress reliever! We don't usually watch HGTV or much reality TV of any kind, but we are loving this show about families looking for their perfect lakefront house at a reasonable price. We can dream ...

As far as books, I always have one in print and one on audio going, so I've read a lot of great ones in the past couple of months!  You can check out my February Book Wrap-Up on YouTube for a brief summary of the seven books I read/listened to that month (with a wide variety of fiction, nonfiction, humor, YA, and a graphic novel). If you enjoy reading, you can also take a look at my monthly summaries on my book blog, Books Read in January and Books Read in February, with links to my reviews.

Some of my recent favorites included Not the End of the World by Kate Atkinson, a collection of short stories. I don't often read short stories, but I really enjoyed this collection of unique, clever, strange stories that mixes real-life with elements of fantasy.

For something light and fun, you can't beat The Spellman Files by Lisa Lutz, a funny novel (and start of a series) about a dysfunctional family of PIs (even the pre-teen daughter helps out and enjoys recreational surveillance after school!). It's narrated by older daughter, izzy, who's a bit of mess but can't escape her crazy but lovable family.

And most recently, I just finished reading The Heart's Invisible Furies by John Boyne, a novel that quickly found its place among my Top 10 Books of All Time. It's the story of the life of Cyril, a man born in Ireland in 1945 who discovers as a teen that he's gay--not a great time or place to be gay! The novel checks in with Cyril every seven years, and though Cyril experiences lots of hardships and tragedies in his life, the novel is also very, very funny. It brought me to tears twice but often had me laughing out loud, too. Any novel that makes me feel that much is top-notch in my book!

I could go on about favorite books forever, but this post is already too long! Just check out my book blog posts and/or videos for more recommendations.

 

How have YOU been? And what have YOU been watching and reading lately? Please share your thoughts and recommendations in the comments below!

Weekly Inspiration: 5 Inspiring Books for Chronic Illness

It's been a while since my last Weekly Inspiration (more like Monthly Inspiration lately), in part because I have been hard at work setting up my YouTube channel! It includes videos about living with chronic illness and about books and reading. In fact, if you prefer to watch/listen, there is a video for today's post. 

I've been meaning to write this post for a long time now, to share with you some of the wonderful books that have inspired me and helped me during my 19-year journey with chronic illness. (Note that the titles below link to my full-length reviews on my book blog (including samples of the audio books) if you want to read more, and at the end of each book's description, I link to both Amazon and Bookshop pages, in case you want to order one of these books).

First, the book that has had the biggest impact on my life: The Anatomy of Hope by Dr. Jerome Groopman. This book came into my life at just the right time, in the early years of my illness, during a severe relapse when I was feeling full of despair. The author shares many personal stories from his patients, as well as his own decades-long battle with chronic back pain. The stories show his own gradual understanding of the role that hope plays in illness and recovery, which is not something taught in medical schools. To be clear, this is not a “positive thinking will make you well” kind of book. All of us with chronic illness have experienced the backlash of that kind of thinking; the implication is that if you’re not well, then it must be your own fault. This is not that. Instead, he presents both anecdotal stories and scientific evidence of the role that hope, joy, and attitude play in healing. He combines compassion and science, and reading this book at that low point in my life made me feel more in control of my life and provided me with some much-needed hope for my future. In fact, when my father was diagnosed with stage 4 melanoma 6 years ago, I gave him this book, along with some of my favorite quotes from it. It affected him the same way. He was something of a pessimist normally, but I think the book helped him to retain some hope, which in turn helped him to fight the cancer and continuing living his life for the next year. I do think hope played a role in helping him last that long and in giving us, his family, one last, precious year to spend with him, experience joy, and create memories. This book is very special to me. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.

 

The next three books I want to share with you are all from the same author, Toni Bernhard, but she’s a very special person, and all three books are inspiring and helpful. Toni has ME/CFS and got sick about the same time I did, so we met online and have been friends for almost 20 years now.

 

Her first book was How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.  This one, as the name implies, is specifically for those with chronic illness, though the title is a bit misleading because it’s really bout how to be well, emotionally and mentally, when your body is sick. And, in fact, anyone dealing with challenges in their lives will find this book helpful. In it, she applies Buddhist principles to life with chronic illness and explains in simple terms how to use these principles in everyday life. For instance, one Buddhist principle is that every life contains challenges, suffering is a normal part of life, and accepting this can ease your suffering. She also covers topics like finding joy in the midst of suffering, healing the mind by living in the present moment, learning to stop destructive thoughts, and much more. She even outlines some simple practices you can use in everyday life. When I first reviewed this book, my copy was filled with dog-eared pages, tabs, and Post-It notes because there was just so much packed into it. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.

 

Toni’s second book, How to Wake Up: A Buddhist Inspired Guide to Navigating Joy and Sorrow, took these concepts and applied them more broadly to any person, not just those living with chronic illness. Once again, Toni applies the tenets of Buddhism to modern life in an accessible way so that anyone can live a life more filled with peace and acceptance. She describes in detail just how to go about “waking up” to a more resilient, peaceful life. In separate chapters, she covers topics like mindfulness, kindness, compassion, and more, as well as obstacles to wellness, like dissatisfaction, anger, and worry. In this brief passage, Toni introduces the concept of judging and why it hampers a life of peace:

 

“Judging is an obstacle to waking up because it’s hard to engage life as an awakened being – with kindness and friendliness, compassion, appreciative joy, and equanimity – if we’re always adding likes and dislikes, shoulds and shouldn’ts to our bare experience.”

 

This book feels like having a good friend by your side, encouraging you, helping you to deal with your challenges and appreciate the joys in your life. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.

 

Toni’s third book, How to Live Well with Chronic Pain and Illness: A Mindful Guide, moves back to focusing in on people with chronic health conditions but in a more general sense. She adapted columns she wrote from her popular column in Psychology Today, “Turning Straw Into Gold.” I hardly know where to start because Toni covers so much ground in this incredible book, and there is so much useful information packed into it. Her short, easy-to-read chapters cover every aspect of life with chronic illness or pain, from the benefits of patience to the problems with complaining, from mindfulness techniques to dealing with doctors, and from appreciating what you have to guidelines for your friends and family. Toni’s warm, kind tone runs through it all, interweaving her own experiences with advice for others. Her approach is always calm and compassionate. As she herself states, “I’ve worked hard to find a measure of peace in the midst of feeling misunderstood,” and she takes that hard-won experience and helps boil it down to basic, simple steps that we can all take to improve our lives and cope better with chronic illness.
Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.

 

My final choice is a beautiful and inspiring little memoir, The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. The author also has ME/CFS, and at the time she wrote this book, she was completely bedridden. A friend discovers a small snail on a walk in the woods and brings it to Elisabeth, setting it down in a pot of violets on her nightstand. At first, she can’t imagine what her friend was thinking or why she’d want a snail! But the snail gradually wins her over, providing a tiny slice of living nature right at her bedside, engaging her mind and, as strange as it may sound, providing companionship.  She writes of the snail’s fascinating habits and compares its life with her own. Her observations of the snail, fortified with facts she learned during later research, are presented in beautiful, poetic language alongside observations of her own restricted life.  It’s hard to describe, but the effect is fascinating and lyrical. Available from Amazon or from BookShop, where you shop online and your purchase supports independent bookstores.

 

And last but not least, as a bonus 6^th book, let’s not forget my own book, published in 2020, Finding a New Normal: Living Your Best Life with Chronic Illness. The focus of my book is on sharing our own experiences and providing practical tips you can use to improve your own life, bit by tiny bit. It covers daily living, emotional coping, relationships, and improvements, in short, easy to read chapters so you can dip in and out of it as needed. Each chapter provides helpful advice to making every day less stressful, more joyful, and more peaceful. This page provides more information, a few reviews, and links to both paperback and all types of e-book formats.

 

And that’s it! These are some of the books I have found most inspirational in living with chronic illness. I hope that you find some inspiration within these pages, as well.

 

In the comments (here or on YouTube), please share which books have inspired YOU!

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