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.

 

TV Tuesday: Veronica Mars

With my husband working from home all the time now, we needed a good "lunchtime show" last year. Generally, even with a suspense/crime type show, we like a bit of humor at mid-day to enjoy with our lunch. We decided to try Veronica Mars, a popular show that aired 2004-2006, then came back in 2019 for a final season (with a movie in 2014). We watched all four seasons and the movie (which actually takes place in between seasons three and four) and loved every moment of it. We were very sorry to say goodbye to Veronica when we finished!

At the start of season 1, Veronica, played by Kristen Bell, is a typical high school student ... well, not exactly. Her best friend was murdered, her dad (played by Enrico Colantoni) was kicked out as sheriff for investigating one of the wealthiest people in their town, and now she helps in her dad's PI business after school. In helping on her dad's cases, investigating her friend's murder, and solving cases for classmates at school, Veronica spends much of her time on surveillance, asking the teen leader of a local bike gang (played by Francis Capra) for favors, and sometimes getting thrown in jail. Not really your classic extra-curricular activities on most high-schoolers' resumes! The investigation of her best friend's murder, which was officially closed out by the police with the supposed culprit in prison, runs as a continual thread throughout the first season, though there is usually another case in each episode, often something a bit lighter brought to her by a classmate or a case her dad is working on. After the events surrounding the murder and her dad's public disgrace, Veronica is no longer welcomed by the wealthy, cool kids in her hometown of Neptune, CA. Now, her only close friend at school is Wallace, played by Percy Daggs III, plus she has a couple of on-again, off-again romantic relationships. Mostly, though, she's a loner with a sarcastic mouth that gets her into trouble and a dark undercurrent from all that she's been through. Season two also takes place in high school, season three takes place on a local college campus, and then there's a 10-year gap before Veronica returns to Neptune for season four.

We both absolutely loved this show! We are fans of Kristen Bell (we've also been watching The Good Place this past year and enjoyed her in House of Lies with Don Cheadle), and she's in top form here. The rest of the regular cast is just as good, and the writing is excellent. If the premise sounds a bit dark to you, well ... it is. Veronica's mom left, her best friend was murdered violently, and her dad was publicly disgraced, so there's good reason for her inner darkness. But this show also has plenty of humor, which we always appreciate to offset the darker moments. And while Veronica doesn't have many friends any more, her relationship with her father is very close and loving, with plenty of amusing banter between them. The underlying mystery plus the cases she solves in each episode provide plenty of suspense, action, and whodunit tension. We loved every moment of this show, through all four seasons and the movie, and were very sorry when it ended.

Veronica Mars is currently available with a subscription on Hulu and for purchase on Apple+ (though we had to rent the movie on Amazon for $2.99). You can also purchase episodes or seasons of the TV show on Amazon.

This trailer provides a preview of the first three seasons, with a teaser about the fourth, to give you a full idea of the arc of the series (without any spoilers):

TV Tuesday: Lakefront Bargain Hunt

Life's been stressful here lately, with lots of medical problems between the two of us and caring for my father-in-law as he declines. Last weekend, before we ran out for our Sunday visit to help him, I thought of something I'd meaning to try on TV for awhile: Lakefront Bargain Hunt. It did the trick! Both of us have been enjoying watching an episode or two together when real life feels too stressful.

This HGTV show features a couple/family in each episode who are ready to buy a lakefront home. They have a budget--usually somewhere around $200,000-$350,000--and a real estate agent shows them 3-4 houses that meet their needs/wants. That's really about it! Each episode is in a different part of the country, so it doubles as a travel show. The episodes we've seen so far took place in the Ozarks in Missouri, the Poconos region of Pennsylvania, Georgia, Minnesota (Land of 10,000 Lakes!), south Texas, and the Rockies in Colorado. The show is made more interesting by the fact that each region has its own style and type of lakefront housing. For instance, the Minnesota couple were looking for a rustic cabin-style home and had plenty to choose from, while the Texas couple looked at lakefront retreats that looked to us like houses in the suburbs, and in Colorado, only lakefront condos were available in the region in which the  mother and son were looking. As is typical if you've ever gone house hunting with a real estate agent for any kind of house, they usually have one that "is outside your budget, but I think you'll love it!" Each house has its pluses and minuses, and you listen to the buyers discuss what they like and don't like as they go through each house. Then, at the end, you hear parts of their discussion, and of course, the big reveal: which house did they choose? 

We are not usually HGTV people--I think this it the first show we have watched on the network. One reason why this particular show appeals to us is that they're not looking at $2 million mansions on 10 acres of land, but houses, cabins, and cottages that regular people might afford. We've been surprised to see that all of these areas do have some really nice places located right on the water for a reasonable price. It's peaceful and calming to look at these lovely places on the water with docks or beaches. Most of all, it's fun to just escape into a fantasy world and dream of having a lakefront home! This is our new go-to escape from stress, and we can't wait to see where they take us next. Just be forewarned: when we watched the latest episode, my husband starting looking at real estate websites online!

P.S. I was worn out tonight, so we just watched another episode while eating Chinese take-out! This one took place in Oshkosh, WI.

Lakefront Bargain Hunt airs on HGTV, and you can also watch it on Hulu or purchase episodes on Amazon or YouTube. Uh-oh, I just noticed there are 13 seasons! There is also a Beachfront Bargain Hunt show. This should keep us pleasantly occupied for awhile ...

I couldn't find a trailer for the whole show, but here's a short clip from one episode, in Indiana:

Movie Monday: On the Rocks

Saturday evening, my husband and I watched On the Rocks, a movie on Apple TV starring Bill Murray and Rashida Jones. We both enjoyed this warm, funny film about marriage and a father-daughter relationship.

Laura, played by Rashida Jones, is a busy mother of two in New York City, struggling to juggle everything at once, including a writing career. She's married to Dean, played by Marlon Wayans, a successful entrepreneur who works long hours and is a devoted dad. Laura's father, Felix, played by Bill Murray, comes into town to visit. He's a perennial ladies' man, full of charm, who flirts shamelessly with every woman he sees. Over drinks, Laura confides that she feels harried and unseen and sometimes wonders if Dean is tempted to cheat with his gorgeous business partner. Felix latches onto that theory (you can hear bits of that conversation in the trailer below), certain that Dean is cheating and launches a spy campaign to help Laura find out for sure. Felix is way too excited about the whole prospect, but Laura's so worried that she goes along with him, even when his antics veer into the obsessive. The two of them dash all over the city together, plotting over martinis in tony hotel bars and even following Dean and his colleagues out at a business dinner. Along the way, father and daughter spend lots of time together, and the viewer is left to wonder: Is he cheating? Or isn't he?

With Bill Murray at the heart of this movie, you know there are lots of laughs, but there's also plenty of warmth, especially in the imperfect father-daughter relationship at the center of the story (made me miss spending time with my dad!). The cast is great, with the focus on Murray and Jones, and the writing is excellent. Oh, and the movie was written and directed by Sofia Coppola, Hollywood royalty! The setting, mostly in New York, is a lot of fun, too, with Felix preferring classic New York hot spots and taking Laura out for lots of dinners and drinks, as they plot their next move. My husband and I both enjoyed this fun movie very much.

If you are a fan of Bill Murray, another great movie of his is St. Vincent, where he plays a grumpy old man roped into babysitting his neighbor's son: lots of laughs and a few tears, too (my review at the link). St. Vincent is available free on IMdB, which you can access through this link.

On the Rocks is currently available exclusively on Apple TV (which you get free for a year with purchase of any Apple device).

News From Our House: Tests, Treatments & Improvement!

It's been a long time since I've written one of these personal updates on my blog because I've been waiting until I had full information to share with you.  I have that now and can tell you about my 11-month-long crash and the tests and treatments that are now leading to improvement. Note that I also recorded a video, Tests and Treatments and Improvement, for my new YouTube Channel with a summary of this post, so if you'd rather listen/watch me explain it rather than reading (or in addition to), just head over there.

 

The couch where I spent most of 2020!

2020: My 11-Month Crash

2020 was a terrible year for me but not for all the same reasons it was terrible for the rest of the world. It didn't matter to me that everything was closed and cancelled and I couldn't see friends or family because I was far too debilitated to do anything anyway. Around mid-March last year, all of my ME/CFS symptoms suddenly worsened considerably, for no obvious reason. I had no energy, struggled to get up in the morning even after sleeping 10 or 11 hours, had horrible flu-like aches almost every day, and worst of all, had completely lost all of my hard-won stamina. Even the slightest bit of activity left me feeling even worse the next day.

Regular readers of my blog know that I was in pretty good shape before that; 2019 was a good year for me, in a string of good years. You can read more about my illness history on the Our Story page. Thanks to a variety of treatments, by 2019, my energy was quite good, I had mostly good days and crash days had become rare, and I could live a relatively active life with almost no post-exertional crashes (within limits but those limits were much broader than they'd been before). Then, 2020 hit.

By May, still exhausted, aching, and on the couch or in bed most days, I called my ME/CFS specialist and told her what had been going on. We both agreed it was likely that some sort of infection had triggered this crash, so she ran some tests to look for common culprits. Because of the immune dysfunction at the heart of ME/CFS, underlying infections have a huge impact on us and are constantly cropping up. COVID-19 was, of course, a concern, given the timing, but my antibody test then (and another one last month) showed I had not been exposed to it. The two infections that did show up in May 2020 were adenovirus (a very common virus that causes a mild cold in most people but could certainly be a trigger for someone with ME/CFS) and HHV-6, a common infection that gets reactivated often in people with ME/CFS (along with its sister, Epstein-Barr Virus, EBV, which is better known) and pops up often in my own lab tests. We treated the HHV-6 with Famvir, a prescription antiviral. However, after five months on it, I had experienced only very mild, minor improvement. Something was still very wrong.

My Lyme Disease and 2020

By the end of 2020, I decided to make an appointment with my son's Lyme specialist to see if she had any ideas for me. Lyme is also nothing new for me. I first got Lyme disease in 2008. Tick infections now occur in every state, country, and continent (except Antarctica) and are very common in those with ME/CFS. I treated mine with a few years of antibiotic treatment and then switched to herbal protocols that were gentler on my system but still effective. Since about 2012, I have considered my Lyme disease to be "under control." Every 2-3 years, it flares up (I can tell by the sudden onset of joint pain and nausea), I treat it with the herbal protocol for a few months, then it seems to go dormant or back into remission for a while. If I'd been paying more attention, I'd have noticed that the times in between flares were getting shorter and shorter, and some new symptoms cropped up, indicating progression.

So, in December 2019, my Lyme flared up again; my knees began to hurt, I got nauseous, and I knew it was back. I resumed treatment and was pain-free again within a couple of weeks (the way it usually works for me). As usual, I stayed on the herbal treatment for a few months. This time, though (damn that 2020!), every time I tried to stop the Lyme treatment, the symptoms returned within days. So, by the end of the year, I decided to meet with my son's Lyme specialist to see if she had any new ideas for me, to treat the infection more effectively. I had read an interesting study from Johns Hopkins about seven herbs that they found more effective than classic antibiotic treatment for Lyme, and I wanted to ask her about those.

 

My Visit and the Start of Improvement

At that very first visit with her in January, the Lyme specialist let me know that I wasn't taking the maximum dose of my current herbal treatments, which I didn't realize. She advised me to increase the doses (and by how much). As for the Johns Hopkins study, she knew about it and told me she did use most of those herbs with her patients, so I started on one of them within a week, Japanese Knotweed, one of the two they deemed most effective against Lyme at Johns Hopkins. As with everything, I started with a super low dose and moved up gradually, as I was able to tolerate more. When I started it and each time I increased the dose, I had a very mild Herx reaction (a temporary worsening common when treating infections like Lyme disease and reactivated viruses), which is an indication that it was working. 

I was shocked when I began to feel better almost immediately! With just these very minor tweaks--increasing the dose of what I'd been taking for over a year and adding one additional herbal supplement--my condition started to improve. Now, about a month later, I am almost back to my "normal" baseline! My energy has returned, the flu-like aches disappeared almost entirely, and I went back to mostly good days, with a mild crash day here and there. Best of all, my stamina began to return; I could walk again and go to the grocery store without crashing the next day.

I was stunned! All this time, I had assumed that my Lyme flare-up was a minor factor in that 2020 worsening and my 11-month-long crash. Now it appears, it was actually a significant factor--and maybe even the major underlying cause.

At the end of that visit in January, they took a lot of blood and ran dozens and dozens of lab tests, to try to get to the bottom of my worsening and find out what other infections might be lurking behind the scenes. 

 

Tests and Treatments

Here's a quick run-down of what my tests showed and how we're treating these issues:

Hypothyroid

This one was a surprise! I'm well aware that many people with ME/CFS have thyroid issues (the immune dysfunction causes endocrine dysfunction), so my primary care doctor usually checks my thyroid function every year, and every year, it comes back normal. This time, the lab tests show low thyroid function (known as hypothyroid). One important point to note: Many doctors only test for certain thyroid measures, which may miss some thyroid dysfunction. I looked back at my last thyroid test, from two years ago, and saw that my doctor only tested TSH (thyroid stimulating hormone), which was normal. In fact, my TSH was still normal this time, but the lab ran a full thyroid panel, and my T3 and T3 uptake were both low. So, everyone with ME/CFs should have thyroid function tested frequently, but be sure your doctor orders a full thyroid panel. Even low-normal results can benefit from treatment.

Treatment: I started taking a low dose of thyroid hormone a few weeks ago (after I started noticing improvement from the Lyme treatment), so it is probably contributing to the overall improvement of this past month.

Immune Function

Two immune measures came up abnormal (in this case, very low). I have had both of these tested before, they have both been low before, but neither has ever been treated directly (beyond the general immune modulators that have helped us so much).

CD57 - low

CD cells are a part of the immune system, involved in the creation of Natural Killer (NK) cells, which are known to typically be low in ME/CFS patients. CD57 specifically fights against Lyme disease (and some other infections). Mine is very low, which means my body can barely fight off Lyme anymore; there's nothing left! Running a CD57 test is actually an alternate way to check for Lyme disease, since testing of the infection is so very unreliable; a low CD57 can indicate the person's immune system has been fighting against Lyme. Mine came up low previously at least one other time, in a 2010 test.

Immunoglobulin M (IgM) - very low

I had a full immunoglobulin panel run, and most of mine came out normal. Immunoglobulins are antibodies produced by the immune system to fight off infections and diseases. Only my IgM came up low, but it was very low. IgM are the first antibodies a body makes when fighting a new infection (some tests look for infection-specific immunoglobulins, where IgM would indicate recent or new infection and IgG would indicate older infection). This means that my body is barely making any antibodies when confronted with new infections right now! This also makes it unlikely that I would make many antibodies if I got the COVID-19 vaccine right now (more info on the vaccines for those with ME/CFS here).

Treatments: She recommended I start with two treatments, which will both help to heal my intestinal lining. Since 70% of our immune systems are in our GI tract/gut, the first step to improving immune function is to heal the gut. I am going to start Mega Mucosa and SBI Protect as soon as they arrive (my visit was via the phone, so they are shipping my supplements to me). My son took both of these for a while when he had severe GI problems. Yes, I know they are each fairly expensive, but the hope is that I can heal my gut and improve my immune system, and then I won't need them anymore.

Infections

There weren't a lot of surprises in terms of infections. As I mentioned above, it is very common in ME/CFS for old, dormant viruses to get reactivated. So, I tested positive for:

• Epstein Barr Virus (EBV)
• HHV-6
• Parvovirus
• Chlamydia Pneumoniae (a bacteria)

These are the usual suspects, and I have tested positive for them in the past (including the positive HHV-6 last spring), but not usually all at once! This is another sign that my immune system is just not fighting back right now. Also, Lyme disease--just like ME/CFS--causes old viruses to reactivate, so that is a double-whammy. Again, it seems now, with all this information, that the Lyme disease was perhaps the underlying cause of last year's worsening, and then the domino effect kicked in, and multiple systems began failing, allowing other infections to flare up also.

Treatments: We decided to focus on herbal antivirals, since I just took a round of prescription antivirals last year, and they didn't seem to do much, plus I have a variety of infections flared up, and while herbals have a broad range, prescription antivirals are very specific to the virus being treated. My son and I both already take several herbal antivirals every day: monolaurin (a component of coconut), olive leaf extract, and emulsified oil of oregano (we take oregano in that form so it won't upset our stomachs). All three of these have antiviral, antibacterial, and antifungal properties, so we take them for a variety of reasons. Interestingly, since I figured viruses were probably behind the scenes, I increased my dose of olive leaf extract (from 2 every other day to 4 every day) in January, and I saw an improvement after that. So, she suggested adding one more antiviral to the daily mix: L-lysine. We've taken that before, and I still have some here, so that's an easy one (it's inexpensive, too).

And, for Lyme disease, I will continue to increase my dose of the herbal treatments I'm already on, and slowly and gradually add in a couple more.

Last week, I felt so good that I was able to take a walk six out of seven days, go to the grocery store, spend 90 minutes dusting, and even help my husband with shoveling snow one day (all while wearing my heart rate monitor and resting when the alarm went off), with no crash after any of those activities! That pretty much brings me back to my "normal" baseline, where I was before the Year of Horror began. With this kind of stunning improvement after just a month, I am feeling very hopeful and optimistic. Who knows? Maybe I'll even end up better than I was before 2020! If I can get the Lyme disease under control and improve my immune system with these treatments, then that's a very good possibility.

Remember, there is a video available on my new YouTube Channel if you'd like to hear/see me explain all of this.

Please 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.

 

ME/CFS and the COVID-19 Vaccines

PLEASE NOTE: THE INFORMATION IN THIS POST I RELEVANT ONLY TO THOSE WITH ME/CFS, A UNIQUE AND COMPLEX IMMUNE SYSTEM DISORDER.

Probably like most of you, I have been thinking about the COVID-19 vaccine ever since the first ones were available. I'm still not yet sure what I will do when it becomes available to me, but now, finally, I think I have the data I need to make a good decision for myself.

Upfront, I want to emphasize that I am a proponent of vaccines, and my kids got all of their required vaccines when they were young. However, ME/CFS is an immune disorder, and that complicates things for us. This post contains all the information you should need to make an informed decision for yourself, too.

ME/CFS Immune Dysfunction

Plenty of studies have confirmed that the immune systems of people with ME/CFS are dysfunctional; they don't work the same way that they do in healthy people. It's a complicated dysfunction, though, that doesn't fit neatly into the usual categories of autoimmune (where the entire immune system is over-active) or immune deficient (where the entire immune system is under-active). In the case of most people with ME/CFS, parts of our immune systems are over-active, while other parts are under-active. You can read more about this in my post Immune System Abnormalities in ME/CFS.

How Vaccines Work and How That Affects ME/CFS

Vaccines are designed to stimulate the immune system; that's how they work. They trick your immune system into thinking it's been exposed to an infectious agent so that your body will produce antibodies to fight it off. Then, later, when you are exposed to the infection the vaccine is meant to prevent, you already have the antibodies against it. This doesn't always mean you won't get any symptoms when you're exposed, just that your immune system will have a head start in fighting it so that your symptoms (if any) will be much milder and not last as long. As an example, when they started vaccinating kids against chicken pox, some kids still had mild symptoms (perhaps a mild fever and a few small pox for a few days) when exposed to the virus later.

Since people with ME/CFS have immune systems which are already partly over-stimulated, this means that with any vaccine, there is a chance that the extra stimulation to our immune system will result in a crash or worsened ME/CFS symptoms. It's not the vaccine's fault; it's doing exactly what it was designed to do. But for those of us with dysfunctional immune systems, the result may not be exactly the same as for healthy people.

Further complicating matters is the fact that there are different kinds of vaccines, including some that use live virus (rarely used now) and some that use inactivated virus (see that link for more types and more info). The COVID-19 vaccines from Pfizer and Moderna (the two currently available in the U.S.) are a new type, a mRNA, or messenger RNA, vaccine. The mRNA is injected into our bloodstream and gives instructions to our cells to create harmless pieces of "spike protein," a protein found on the surface of the virus that causes COVID-19 (SARS-CoV2). That triggers our immune systems to begin making antibodies, which will protect us against future infections. You can read more about this type of vaccine and how it works on the CDC website. The Astra Zeneca vaccine from Oxford (currently the most common one used in the U.K.) and the upcoming Johnson & Johnson vaccine are adenovirus-based (an adenovirus is one type that causes the common cold). That means it uses the virus--considered harmless to most people but a potential viral trigger for those with ME/CFS--to get the vaccine into your cells. This article explains how those two types of vaccines work and this article compares all of the COVID-19 vaccines currently available (and coming up). Finally, it is important to note that experts currently estimate that the COVID-19 vaccine will provide protection for only six months to a year. This means that, like the flu shot, people will need a new one each year.

I highly recommend reading ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine by Cort Johnson of Health Rising, who has a great talent for doing all the research and making it easy for patients to understand. His article includes lots of information, plus opinions from several of our top ME/CFS experts.

So, no one really knows for sure how people with ME/CFS will react to the vaccine, since it is entirely different (but not unknown - that CDC link includes past research and experience). However, anything that stimulates our immune system is likely to cause an ME/CFS crash: the question is how bad and for how long?

Our Experiences

Our own experiences (mine with ME/CFS for 19 years, my older son for 17 years, and my younger son for 10 years, now recovered) mirror the scientific findings that I describe in that post on immune abnormalities. We all have evidence of over-responding to allergens (both environmental and food allergens), over-responding to viruses, and under-responding to bacterial infections. This means that in 17/19 years, my son and I have very rarely caught a cold or flu because our immune systems fight off viruses, though just being exposed to a simple cold virus can cause a virally-triggered crash for us. This means that we don't develop symptoms of the virus, like congestion or cough, but our "normal" ME/CFS symptoms (which are immune symptoms) get worse. You can read more about this in the post, The October Slide: ME/CFS and Infectious Triggers. On the other hand, if my son or I gets even a tiny bit of congestion, even from allergies, we develop bacterial bronchitis and need antibiotics--because our immune systems are not fighting off bacteria the way they should be.

As for vaccines, since my sons first became ill with ME/CFS, we and their doctors all agreed they should stick to only the most necessary vaccines (they were 8 and 10 by then so had all of their young childhood vaccines), just to avoid that extra jolt to already-overactive immune systems. So, they did not get the HPV vaccines, but they did both get the meningitis vaccine before college, since that is a highly contagious infection that is often fatal. Neither of them had any adverse reaction or crash after the meningitis vaccine.

My older son and I (my younger son was well by then) normally do not get flu vaccines, but we did get it the year of the H1N1 scare. He did fine, with minimal crash after, but I crashed (worsened) severely for a full month after. That was my first and last flu shot! In almost 20 years, my son got the flu once, and I've never caught it, and there are now inexpensive and readily available antivirals for flu, so that seemed like the right choice for us.

BUT ... again, the COVID-19 vaccine is a different type than any of these. Still, I spent the past 11 months in a lengthy crash, lying on the couch, and am just starting to feel better, so I am not eager to make a leap of faith. Luckily, there is one last puzzle piece now available ...

Experiences of Other Patients with ME/CFS

With so many unknowns, what I've been waiting for is data: what happens when people with ME/CFS get the COVID-19 vaccine?

Not surprisingly, none of the pre-approval studies of any of the vaccines used people with ME/CFS! They mostly choose healthy people without pre-existing conditions for those studies. So, I was very curious as to how real people with the ME/CFS immune dysfunction would react. For several months, I couldn't find this information anywhere, but there are now two excellent sources for real ME/CFS patient information:

• Action for ME, a UK patient organization, has set up a website for UK patients to record their experiences with the COVID-19 vaccine. There are only three responses so far, but hopefully that will grow over time.
• Facebook Group - there is a new Facebook group, ME/CFS and the COVID Vaccines, specifically set up to relay information and allow group members to share their experiences and ask questions. This is just what I needed! The group already has 3000 members, and there are new posts every day from people with ME/CFS who got their vaccine and report on their response. So far, from some brief perusals, it seems that most are having similar reactions as the healthy population--a few days of flu-like symptoms and then back to baseline. I am watching carefully to see what the longer-term response is: whether there are any people who have a longer-term crash or more long-term worsening.
• Health Rising Poll - the Health Rising website, a reliable source of information for ME/CFS patients, has also set up a poll to collect data on responses to various COVID-19 vaccines. You can enter your own response here or click the link at the bottom of the poll to view the results so far. This poll gives me great optimism, as the large majority of patients who have responded so far said their post-vaccine symptoms lasted less than a week. I can live with that!
  

For me, I am going to keep up with the Facebook group and the poll and keep reading about others' experiences. The vaccine is not even close to being available to me yet, so I have time. My husband is 66 years old and has waited about 5 weeks now on the state's wait list for 65-and-up, with no word (though he lucked out and got one elsewhere this week, entirely by chance), so I think it will be some time before I'm eligible. There is definitely too much demand and not enough supply yet.

However, learning more and especially reading about others' experiences is making me far more optimistic that I will be able to get the COVID-19 vaccine without any long-term worsening.