Life with Chronic Illness: Finally Setting Goals for 2025!

Life with ME/CFS is always unpredictable! My last post here was 2024 Year in Review: Still Riding the Chronic Illness Rollercoaster! That was not only a summary of how I felt last year and what caused challenges for me but also a long list of treatments (old and new) that I tried or changed last year, what worked and what didn't. Since then, I recorded a video version of that post, so if it was too much for you to read--or you just have an easier time with video--you can watch my 2024 Year in Review (including the treatments I tried) on YouTube or below:

Once I had finished summing up last year, I was finally ready to start planning and setting goals for 2025 ... in February! 

I've written and talked extensively about Setting Goals When Chronically Ill: Improving Your Life in Tiny Steps. You can read the full chapter excerpted from my book here on the blog or watch the video version of it.

But this year, I was feeling overwhelmed by it all, especially since I didn't even start thinking about the new year until we were a month into it! I expressed these frustrations in a video, How Do You Juggle It All? Without Feeling Overwhelmed. Based on the comments, I think a lot of people--both healthy and sick--could relate to my feelings. Watch it on YouTube or below:

My own goals process had become more and more complex over the years, so this year I decided to take my own advice! I focused on only a few objectives for each of my Lifetime Goals and really tried to narrow my attention to tackle that feeling of always being overwhelmed. And to keep my limitations in mind.

Given the ups and downs in my health last year, health remains a big focus for me (of course). I also got rid of perennial goals that have become a part of my normal routine, like diet, walking (when I am up to it), daily yoga stretches, and resting when I crash. What I was left with, under my goal of optimizing my health (given my illness) was:

• Set up mold inspection & follow-up on results
• Continue to avoid infection risks
• Find new primary care doctor (mine of 23 years just retired!)
• Talk to my ME/CFS specialist about my changing immune dysfunction
• Try therapy for dysfunctional family relationships

I have similarly streamlined goals for the other areas of my life, with a big focus on traveling more this year with my husband and our camper.

Things were going quite well with my new approach, and I was feeling less overwhelmed and stressed. Then, a few days ago, some viral symptoms started. I haven't had a cold or other everyday virus in 20 years due to my immune system over-reacting to most viruses. I immediately thought it must be COVID (which is in a class of its own, plus I don't make many antibodies against it). Three days in, I still feel like I have a cold. It's not nearly as severe as my bout of COVID last summer (and I've had two negative tests so far). I am completely mystified because this just doesn't happen to me, but I am hopeful I will recover in a short-ish time. 

Meanwhile, I am resting a lot, ditching all those carefully thought-out plans for the moment, and being very, very cautious. I'm following my own advice and upping the doses of all my herbal anti-virals. I have no idea what's going on with me, but I'm hoping for the best. The first of our month-long road trips is supposed to begin in less than a month, so fingers crossed!

How have you been?

 

Do you struggle with feeling overwhelmed?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

2024 Year in Review: Still Riding the Chronic Illness Rollercoaster!

For the second year in a row, I'm referring to the past year as a rollercoaster (in fact, Riding the Chronic Illness Rollercoaster is the name of a chapter in my book!) because that's the best description for it, with major highs and major lows last year in my life with ME/CFS and Lyme. In this post, I'll provide a brief overview of my year and what caused those ups and downs, review the many different treatments I tried (or restarted or stopped) and what helped and what didn't. I also made a video summary, if you prefer to watch (I'll link it here after it's edited and posted or you can check my YouTube channel).

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking very small steps toward what I want in my life, see my video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

Overview of My Health in 2024

Average How I Felt = 2.5 (1 is good; 5 is bad)

• Same as 2023.
• My best months were 2.1, and my worst was 3.5 (rollercoaster!).
  

Average % crashed = 14% (meaning I was couchbound/bedridden 14% of the time)

• Crashed = a 3.5, 4, or 5 on my scale, unable to function, stuck in bed or lying on the couch.
  
• The average doesn't tell the whole story because there were six months without a single crash day and months where I was crashed more than 50% of the time.
  

Average exertion = 3.8 (on a scale of 1 to 5)

• Same as 2023.
  
• Again, there were good months and bad. 
  

Month-by-Month Changes & Why:

January to June - I felt great, not a single crash day in six months! My average "how I felt" each month was 2.1 or 2.2, which is very good for me. My average exertion was 4 on a scale of 1 to 5! I was active and feeling great and not crashing at all.

July/August - I got COVID in early July (my second time), and my crash-free streak came to an abrupt end. I was very sick but got on Paxlovid immediately (see treatments below). I started to recover in August.

September - By the end of September, I was fully recovered from COVID and back to my excellent baseline of the start of the year, able to be active again without crashing and feeling good every day.

October to December - Around mid-October, I went into an ME/CFS relapse, with severe flu-like aches every day (a sign that my immune system was over-active). I have no idea why it started; it's likely I was exposed to something (someone's cold, for instance). I was still in terrible shape by Christmas but finally recovered back to a good baseline in the second week of January, the relapse ending as mysteriously as it started.

 

Treatments - What Helped & What Didn't

Treating Hypothyroidism in 2023 - I spent all of 2023 working with my primary care doctor to try to effectively treat very low thyroid function. I got lab tests every two months, she adjusted my meds based on the results, and by the end of the year, I was feeling much, much better with great energy. In early 2024, I continued that treatment and gradually added Iodoral (iodine supplement), which also helped. All of this is explained in detail in my Diagnosing and Treating Thyroid Dysfunction post (a very common issue in ME/CFS and long-COVID). I also lost 19 pounds just from treating hypothyroidism, with no other changes. Helped a lot.

Carnivore/Keto Diets (low carb) - At the start of 2024, I changed my diet dramatically to try to get yeast overgrowth under control (I was already doing everything else on the list in my Treating Yeast Overgrowth post.) I ate a mostly carnivore diet for the first three months, and I immediately felt much, much better (the end of 2023 had been rough, too, due to yeast). In April, I transitioned to a keto diet (I explain paleo, keto, and carnivore diets in this video) and kept that up. I lost an additional 7 pounds from the diet changes, and my cholesterol and triglycerides have never been lower! My husband, who is healthy, lost 20 pounds just from the diet changes. Helped a lot.

Changed Probiotics & Added Pancreatic Enzymes Based on Test Results and Goals - I worked with our functional medicine specialist (someone who looks at the body as a whole instead of just one system). She did a Gut Zoomer test for me (stool testing offered by Vibrant Labs) which provided a lot of interesting information. Based on my results, I started pancreatic enzymes (see Digestive Enzymes below) and switched to different probiotics, based on both my test results and my goal of controlling yeast overgrowth. Helped with controlling yeast.

Stopped Inosine - Inosine is an immune modulator that helped my son and I for over 15 years (read more about inosine and how to use it here). I had been taking a break from it (necessary to keep it working) and when I tried to restart it last year, it seemed to overstimulate my immune system and maybe make my yeast overgrowth flare up. I've noticed that my immune dysfunction in the last few years is more overactive/up-regulated, where it used to be more of a mixed bag. So, for now, I'm not taking it. But it helped for decades, and I will definitely keep it as an option. For now, stopping it helped.

Paxlovid - This was essential to my quick recovery (for someone with ME/CFS) from COVID last year. When I got COVID in 2022 and Paxlovid was not available, it took me 6 months to recover back to baseline. This year, it took about 2 months - big difference! You can read more about my experiences with COVID and Paxlovid here. Helped a lot.

Oxytocin Nasal Spray - This is one of several new treatments I tried last year that my ME/CFS specialist recommended, based on new evidence or research. Many articles have been written about oxytocin (often called the "feel good" hormone) possibly being helpful for those with ME/CFS, long-COVID, and fibromyalgia. It didn't help me--and maybe made me feel worse--but it is helpful for some. Didn't help me.

Digestive Enzymes - Another new treatment suggested by my ME/CFS specialist, based on recent research. The studies showed that people with ME/CFS and long-COVID don't fully digest our foods, so digestive enzymes can be helpful. She recommended a supplement, which I got, and also prescribed prescription enzymes. When I picked up the Rx, I found that its ingredients were identical to the pancreatic enzymes I'd been taking all year, except that the supplement had much higher levels of each enzyme. So, I kept up the pancreatic enzymes, added the digestive enzymes, and didn't take the prescription. I think this is what helped me recover that last bit after COVID so that I was feeling good and able to be active again without crashing. Helped.

 LOLA (L-ornithine/l-aspartate) - Again, my ME/CFS specialist suggested this blend of two amino acids based on recent research into the metabolic changes in ME/CFS and long-COVID (read more here). I plan to write a blog post about this, as it is attracting a lot of attention. It didn't seem to help me, but I tried it in the middle of that awful relapse when nothing was helping, so I may try again. Didn't help me but is helping some others.

Valtrex - This antiviral (generic name is valacyclovir) works against all herpes-family viruses (like EBV, HHV-6, CMV, HV-1, etc.). Since it's known that the immune dysfunction of ME/CFS makes these old, dormant viruses reactivate, and my doctor and I knew my immune system was "stuck" in an overactive state, I tried 3 months of Valtrex, but I guess that wasn't my problem this time. It helped me a lot in the past (back in 2006), especially with improved mental clarity (mostly eliminated brain fog) but didn't help this time - again, nothing was helping in those last months of the year! Helped me before but didn't help me this time. 

Prednisone (steroids) - Steroids should be used in ME/CFS with caution, only in specific cases where it's indicated, and only for short periods of time. Again, my doctor and I could tell my immune system was stuck in an overactive state, and prednisone suppresses the immune system, so we hoped it would calm the immune system down for me. Since most with ME/CFS (like me for the first 18 years or so) usually have an immune system that is partly overactive and partly underactive, steroids are not normally helpful and could be dangerous. I tried two rounds of just 5 days each. While it didn't immediately end my relapse, I did see a small improvement after each round (though I don't feel good while I'm on them and need extra beta blockers because it raises my heart rate even more). Probably helped, I think.

Stopped Low-Dose Naltrexone (for now) - As you can see, I tried pretty much everything those last few months! I was desperate. On the theory that any treatment for the immune system might be too stimulating while my immune system was stuck in this overactive state, I temporarily stopped taking LDN. Note that I have been taking it for about 18 years now, and it helped me tremendously for a long time. For now, I'm taking a break. It may be only coincidence, but my relapse finally ended about a week later. I will definitely try to restart it at some point. More info on LDN, how it works, and dosing.  I think it helped?

 

As you can see, I got pretty desperate at the end of the year and tried everything I and my doctors could think of! And my relapse may have ended, much like it started!, coincidentally for mysterious reasons I don't know. But this is why I track how I feel and the treatments I try, to try to see cause and effect.

So far, in 2025, once I got past that relapse around the second week of January, I have been feeling really good, just like during the first six months of 2023. My "how I feel" score has been a steady 2 every single day since the relapse ended, and I have been gradually, carefully increasing my exertion levels again. As of this week, I am walking about 20-40 minutes almost every day (with my heart rate monitor on) and am back to doing small on-the-floor strengthening routines for upper body, lower body, and core three times a week ... and not a single crash! 

Keep in mind that this is all very good for someone with ME/CFS. I still need 9.5 hours of sleep a night (but not 10.5 hours like the past few months), a nap every afternoon, and am still careful to stay within my limits--but those limits are wider now. We are making a lot of travel plans for 2025, so I am hoping my relatively good health continues!

So, that was my 2024.

How was last year for you?

 

What treatments help you?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

Favorite Movies Watched in 2024

Once again, I reviewed just 9 movies in 2024, in part because there is so much great TV to watch now. I only review movies that I really enjoy, so any movies on my entire 2024 list (below) are worth watching, not just my top picks. Also, it's almost impossible these days to label a movie in a single genre, so I included some explanation for most of them.

As in years past, my top picks in each genre are just below and my full list of movies reviewed last year  is further down. To see all of the movies I have reviewed on my blog--a considerable list--check out the Movies tab, where they are listed by genre (keeping in mind there's a lot of cross-over). Links go to my reviews, with a trailer. Note that where each movie is available might have changed, since I first reviewed it, so double-check to see where you can watch it now.

 

Best of the Best Movies Watched in 2024

Note how many of my top picks were adapted from books:

Best Action/Suspense/Thriller

Stillwater 

Matt Damon is excellent as a father from Oklahoma trying to save his daughter who's been imprisoned in France. Combines family drama, mystery, and legal drama.

 

Best Drama

Can I declare a 4-way tie? All of these (see below) were excellent and recommended (how does the Academy decide?).

Killers of the Flower Moon 

Outstanding in every way, with an all-star cast and fabulous cinematography. An historical drama about mysterious murders of Indigenous people in early 1900's Tulsa. Based on the nonfiction book by David Grann.

 

 Best Comedy

Probably our favorite movie of the year! This warm, thoughtful, entertaining movie about books, writing, and the publishing industry is also laugh-out-loud funny. Based on the novel Erasure by Percival Everett, proving he was brilliant even before James.

American Fiction

Best Sci Fi

I was tempted to pick A Quiet Day (see below) because it was more my style, but there is no question that these two movies, based on the best-selling novel, are epic sci fi masterpieces.

Dune and Dune Part 2

 

 

All Movies Reviewed in 2024

All of these are worth watching! See the Movies tab for more great movies.

Action/Suspense/Thriller

Hit Man (thriller with romcom elements)

Stillwater (also a family drama)

 

Drama

The Holdovers (funny, too)

Killers of the Flower Moon (suspenseful historical drama)

My Old Ass (but also very funny)

Next Exit (sci fi setting with focus on characters and plenty of humor)

Comedy

American Fiction (also a warm, thoughtful drama)

 

Sci Fi 

Dune and Dune Part 2

A Quiet Place: Day One (sci fi thriller with focus on characters)

A Look Back at Travel and Outdoors in 2024

Last week, I put together a highlight reel of all of our outdoor trips from last year, a Travel Year in Review. We travel with our little camper--our home away from home--so we go at our own pace and usually have very relaxing trips. It's so rejuvenating to get outside and spend so much time surrounded by nature; it's very peaceful and provides a lovely break from the usual busy, online life I lead. My illness did interrupt our travels a couple of times last year, which I mention in the video, but we were fortunate to be able to travel to some lovely places and surround ourselves with natural beauty.

We took six camping trips in 2024 to various state parks in Virginia, Pennsylvania, New York, and Delaware--mostly close to home or within an easy day's drive. We also visited some local attractions, including bookstores, a natural history museum, a historic small town, and a historic site (which we happened to visit on an important anniversary for the site). The video provides an overview of all of that, with lots of footage of peaceful nature scenes: waterfalls, forests, lakes, running streams, and gorgeous fall foliage. I hope you enjoy vicariously coming along with us.

You can watch the video on YouTube or below:

In other news, my three-month-long relapse finally ended a couple of weeks ago! I have slowly been coming back to life, taking short walks, getting out of the house, and even seeing friends (carefully, of course).

However, being in such bad shape for so long put me way behind on ... well, everything! I'm working to catch up, so I hope to finally take a look back at my health in 2024, including what helped (and what didn't), so look for my annual health review soon.

Were you able to travel or spend time outdoors in 2024?

What are your favorite places to visit or outdoor spaces to relax?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

In other news, my three-month-long relapse finally ended a couple of weeks ago! I have slowly been coming back to life, taking short walks, getting out of the house, and even seeing friends (carefully, of course).

However, being in such bad shape for so long put me way behind on ... well, everything! I'm working to catch up, so I hope to finally take a look back at my health in 2024, including what helped (and what didn't), so look for my annual health review soon.

Were you able to travel or spend time outdoors in 2024?

What are your favorite places to visit or outdoor spaces to relax?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

My Relapse Is Finally Ending!

I got out on a local walking trail today!

Sorry I've been so absent from the blog; I was pretty wiped out after the holidays. But I have good news! After three months of being badly relapsed with my chronic illness (ME/CFS) and stuck on the couch, I am starting to come back to life. The last two weeks, I had some better days but was very up and down: good day, bad day, good day, bad day, etc. This week, I have finally turned the corner. Today is my fourth good day in a row, so I don't think this is a fluke. I seem to be finally coming back to life.

I left the house three times this week, after months of being stuck on the couch. One of those was a trip to the orthodontist to get Invisiline (at age 59!), but even that was a big thrill. I ran a few small errands in our little town, and it felt so good just to be out in the world again, in my little red car, singing along to the radio, and seeing people besides my husband! And today, I got a long overdue haircut and ran into an old friend I hadn't seen in over 10 years!

For the last two days, after several days with no flu-like aches, I cautiously began walking again: still  tiny walks of about 15 minutes, but I left our little cul-de-sac! Such a thrill 😀 And today, the temperature went above freezing for the first time in over a week, so my timing was great--that sunshine felt so good.

This is the song that's been going through my head today (it's a weird video & some weird lyrics, so I'm not sure what the artist intended, but the chorus has been going through my head and making me smile):

What caused the relapse and why did it end? I have no idea! I wish I had some answers, but this disease defies logic (which makes me crazy--I like logic). The flu-like aches (a sign of immune activation) began on a random day in mid-October. My best guess is that I was possibly exposed to someone's random cold, and it triggered my immune system into overdrive for three months. I wear a mask in public, but sometimes my son or close friends come to visit (I realize I should be wearing a mask then, too) or (rarely) we eat in a restaurant where I have to remove my mask. 

Or perhaps it was simply an increase in allergies triggering my immune system to rev up. My main allergies are to dust and mold, and the timing sort of coincides with spending more time indoors (and molds increase in fall with leaves on the ground), though we had a very warm, dry fall this year. Who knows? I wish I knew what the trigger was so I could prevent it next year because I am really sick of being at my worst during the holiday season.

For a while, I thought it was the same thing that caused a bad relapse at the end of last year: yeast overgrowth, which is chronic for me and many people with ME/CFS or long-COVID, due to the specific kind of immune dysfunction we have. But I got extra-strict with my diet (still doing a keto diet) and switched to a stronger prescription antifungal than I normally take for a month. My dentist even checked me out and said there was absolutely no sign of thrush in my mouth, so I don't think that was the cause this time.

Perhaps my treatments played some role in my improvement. I took two 5-day rounds of steroids in December, in a desperate attempt to calm down my immune system so I would feel better by Christmas. I actually felt awful Christmas Eve and Christmas Day, but I was also doing way too much with lots of people here. But maybe the steroids did eventually help calm down my immune system. I do think the aches were less severe afterwards.

I also played around with my immune treatments, wondering if instead of their typical moderating effect, they might be further over-stimulating my immune system. I went off low-dose naltrexone for the first time in about 16 years. I tried restarting it a couple of times, then gave up and just stayed off it (for now). [Though note that it helped me tremendously for those 16 years, so it is worth trying. Details at the link.] I also stopped my daily glutathione nasal spray for a week or two, but I have restarted it, which coincided with feeling better. It's all such a guessing game because SO many factors can affect how we feel (including random things like the weather).

I'm due for another increase in my thyroid medications (for hypothyroidism) after labwork showed my numbers still well below normal in November, but other than that, I plan to stay the course and not change anything else for now. Don't want to mess with success!

We are starting to plan some big road trips with our camper for 2025, but you know how it is with this crazy disease! Last year, I got COVID in July and had to cancel five campground reservations for a two-week trip we planned. So, we will make reservations and hope for the best.

Now that I'm feeling better, I hope to do a 2024 wrap-up, both here and on YouTube, like I usually do at the start of a new year.

How are you so far in 2025?

What are your hopes and plans for the new year (relative to health or anything else)?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

 

Movie Monday: Next Exit

My husband and I took a break from the hectic holiday season recently with a movie. I chose Next Exit. I'm not sure where I first heard about this movie, but it was on my very long list (an Excel spreadsheet!) of movies I want to watch. The premise sounds a bit dark (and my husband doesn't like dark), but I liked the trailer and read that it had some humor in it. We both enjoyed it very much, though it is hard to categorize, as it includes elements of drama, comedy, and even science fiction.

The movie is set against a science fiction backdrop, but that only comes into the story at the very beginning and the end. A scientist has proven there is an afterlife, and her video of a little boy playing cards with the "ghost" of his dead father brings wide media attention to her work. She's overseeing a large study, where people volunteer to go into the afterlife (i.e. die), and she has developed a way to track them into that world. But this film focuses in on just two people who have signed up for the study: Rose, played by Katie Parker, and Teddy, played by Rahul Kohli. Rose is haunted by a ghostly presence that seems to be her dead father, and she copes by drinking heavily. We're not sure at first why Teddy signed up for the study, except that he seems to be mostly alone in the world, with no family. The two of them are both headed cross-country to California and only have five days to get there. Due to a series of travel mishaps, they end up sharing a rental car. Rose is especially prickly at first and not interested in getting to know Teddy, but the long hours on the road, plus some challenges they encounter together eventually lead to them talking and gradually sharing their stories and connecting, in spite of Rose's reticence. 

If that sounds depressing--two strangers sharing a ride on their way to commit suicide--it's not! In fact, it's a surprisingly uplifting movie. It has a great sense of humor, with plenty of funny moments to add levity to the somber plot. The two lead characters are both excellent, and it's entertaining to watch them slowly engage with each other. As they each gradually reveal information about their history and the reasons why they embarked on this trip, the viewer comes along for the ride (if you'll excuse the metaphor). And, yes, it's a road trip movie, so there is plenty of inherent fun in that trope (though, as a veteran road-tripper, I thought their route made no sense--but it was good for the story). All in all, this isn't a story about death; it's a story about life. It's about hope, meaning, and connections. We both thoroughly enjoyed it.

Next Exit is currently available on Hulu and for a fee on many other streaming platforms.

Chronic Illness Holiday Update

Wow, I knew it had been a while since I had the time or energy to post here, but I see it's been three weeks! Sorry about that. I am still in the throes of a bad relapse of my ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome)--about two and a half months now--and the holiday season has been rough.

I've had terrible flu-like aches every day for about the last 10 weeks, so I know my immune system is in an "activated" or hyper state. But I have no idea what triggered it this time. When the same thing happened at the same time last year, it turned out to be a flare-up of yeast overgrowth (common in ME/CFS; treatments at the link). So, I first tried a stronger prescription antifungal than I normally take for a month. However, I've been sticking to my stricter keto-style diet all year (which has been very effective), and I double-checked with TWO visits to my dentist, who confirmed there was absolutely no sign of thrush or yeast overgrowth. So, my best guess is that this lengthy crash was "just" triggered by exposure to some random virus, like a cold. Though I wear a mask out in the world, my son comes home sometimes, and we occasionally have close friends over and eat together. Who knows.

I also tried two short (5-day) rounds of prednisone (a steroid) to try to calm my immune system down. That did help a little bit (especially the second round)--and I added two more days just to get through Christmas--but I'm still not back to my normal baseline. I still have those flu-like aches every day, though they're not quite as severe as before.

You can hear all the details in my recent Chronic Illness Vlog, recorded two weeks before Christmas during that first round of steroids. It's an honest peek into my daily life for a week: the good, the bad, and the ugly! You can watch the video on my YouTube Channel or I'll include it below.

So, I was in pretty bad shape on Christmas Eve and Christmas Day: off the steroids and had overdone on Sunday, trying to help my husband a bit with cleaning and decorating (I know better but he's been doing everything). That's why I restarted the steroids--just for 2 days--on Christmas. I didn't sleep well Christmas Eve in the early morning (too worried about everything I had to do!), so I was pretty wiped out. I somehow just zombied through my day with a smile (and a mask) on my face. Our son (with a bad cold!) and his girlfriend came to visit, as did my mom and her husband, our usual crowd for Christmas Day. We smartened up this year and ordered the food in--a full turkey dinner that was delicious! It still required some work to get everything warmed up, table set, etc. but everyone helped. 

Christmas dinner

I was quite a bit better yesterday after a much better night's sleep (it sucks how one hour of sleep more or less can mean functioning OK versus feeling horribly sick). So, I managed to enjoy our annual cookie decorating/Grinch party with our oldest and closest friends--a cherished tradition, even though the "kids" are in their 30's now!

The cookies we decorated last night!

And today, everyone had gone back home, my husband and younger son went golfing, and I had a spectacular day in quiet solitude! Still mildly achy and worn out (woke too early again), but with absolutely nothing I had to do. And now it's time to reheat leftovers for dinner!

Tonight I plan to add an extra 1 mg of my extended-release melatonin (from 2 to 3 mg) to my usual regimen of treatments to correct sleep dysfunction (which I am really appreciating!) to hopefully end this too-early waking in the morning.

Tell me how you spent your holidays this year!

How have you been feeling?

Do you get worse in late fall/winter?

How do you accommodate your illness and still enjoy holidays & family?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Diets Recommended for Chronic Illness: Paleo, Keto, Carnivore

I finally edited and uploaded my video on the three diets most often recommended for ME/CFS, long-COVID, and other immune disorders: paleo, keto, and carnivore diets.

The video describes each of these three different diet options in detail, including what each entails, how they can benefit someone with chronic illness, and lots of ideas on what kinds of foods to eat, with plenty of suggestions for meals, snacks, and recipes. All three of these diets are often recommended for a wide variety of medical conditions, including immune disorders like ME/CFS and long-COVID, autoimmune disease, and any health problem that involves inflammation. They are all low in inflammatory foods, low in foods likely to exacerbate food allergies or intolerances (which are very common in ME/CFS and long-COVID), and good for those with yeast overgrowth (also very common in ME/CFS due to our specific kind of immune dysfunction). Surprisingly, these diets are also very tasty, with a wide variety of flavors, and are easier and less work than a traditional diet.

We have tried all three and have seen benefits in reduced symptoms, increased energy, and better control of yeast overgrowth. We ate paleo for about a decade or so, and I wrote a detailed blog post about the paleo diet, if you prefer to read about it. However, as I explained in the video, I now know it was a mistake to make exceptions to it, so ignore the modifications I talk about in the post! When I have more energy, I'll update that. It worked well for us for a long time and might have continued to work for me, if I'd been stricter with it. At the start of 2024, I ate mostly carnivore for three months, which helped to get my yeast overgrowth under control. And since April, I have been eating more of a keto diet. My husband has also been eating keto, all year. We both lost weight (though that was not my intention), and my cholesterol and triglycerides are the lowest they have ever been, by a lot!

You can watch the video on YouTube or here:

These diets have definitely helped my son and I over the years. In fact, discovering my son was severely gluten-intolerant in 2020 and getting him on a gluten-free diet (which all of these are) was a key to his current excellent condition. Eliminating gluten and following a paleo/keto/carnivore-ish diet (he eats sort of a mash-up of the three these days) helped to not only improve his gastrointestinal symptoms but also significantly improved all of his symptoms. Since June, he has been working a fairly rigorous, physical job in the field he studied full-time! It still feels like a miracle to us, but he says it's the best he's felt in as long as he can remember (he's 30 now and has been sick since age 10).

We are still learning, so I would love to hear about your experiences (or your questions).

Have dietary changes helped you?

 

Have you tried any of these diets?

 

Please share your experiences with diet or your comments and questions.

You can leave a comment below.

You can also connect with me on Facebook and Twitter and Instagram.

Giving Tuesday 2024: Help ME/CFS and Long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few minutes to either donate or set up recurring donations. And every little bit counts.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! All of the groups listed below that do ME/CFS research and/or support ME/CFS patients are now also helping those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing great work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingNovemberOMF - Thanks to generous gifts by multiple donors, every donation made in November (through today, December 3) is TRIPLED, up to $1,000,000! It's a great opportunity to make your money go farther! This organization does some outstanding, groundbreaking scientific research into causes, treatments, and cures for ME/CFS and long-COVID, with doctors, scientists, and researchers in Collaborative Centers across the globe. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - Donations made to Solve ME today will be doubled, thanks to donations from their Board of Directors! And today only, on Giving Tuesday, another generous donor has offered to also match donations up to $25,000, so donate today and your money will be tripled! This organization does a lot of work in both ME/CFS and long-COVID research and advocacy. You can read their newsletters here, including research updates and read more about their Solve Long-COVID Initiative here.
  
• Simmaron Research - Donate through their website and you can read all about their research projects here, including the first-ever biomarker-based treatment trial.
  
• #MEAction - This organization is focused on advocacy and outreach rather than on research, and they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, ways that anyone can help and take action, and you can donate to the organization here. They also have information on Long-COVID and ME. 
• American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) - they focus on meeting the needs of patients and caregivers through support, advocacy, and education. They have an informative newsletter, loads of useful information on their website, and advocacy programs. They also, uniquely, have a Financial Crisis Fund that I recently donated to, to help patients in dire need of food, housing, medical care, or other support. You can donate to AMMES here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.They also have an online shop featuring all kinds of books, t-shirts, cards, and more, with proceeds supporting the organization. And you can donate here.
  
• Emerge - The primary ME/CFS association in Australia provides research and patient support and advocacy. They are now also helping to support the Australian Collaborative Research Center of Open Medicine Foundation. Donate here.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. I have hosted fundraisers on Facebook for my birthday every year, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, and share your fundraiser with Facebook friends.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop! 

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. And use that iGive link I posted in the previous line, and we'll earn an extra $5 for Solve ME!

To show you how well this works, my iGive page currently shows that I have selected Solve ME as my cause, that I have personally earned and donated $314.10 to them, and that they have earned a total of $6,611.39 from all supporters! Isn't that amazing? Over $6600 just from clicking a button before we shop online. Amazon is not a part of either program and got rid of its own charitable donation program last year, but you can find most other online stores on at least one of these.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients! 

 

Let me know if you know of other organizations or other ways to give that I missed here.

You can leave a comment below.

You can also connect with me on Facebook and Twitter and Instagram.

Chronic Illness Vlog: A Week in My Life During a Crash (Plus, Nature!)

I've been stuck in a mysterious relapse of my ME/CFS for the past month. I've had flu-like aches every day. I thought that--like last fall--it was due to yeast overgrowth flaring up again, but stronger antifungals and a stricter diet aren't having the effect I'd hoped. I'm a little better, but still achy. Since that is an immune symptom that is a warning sign for me, I have been lying low, not going out much, no walks, and spending a lot of time on the couch ... and in my reclining chair on my deck.

I made a vlog last week that gives you a peek into my life with chronic illness during a down week (though, admittedly, not as bad as in the past for most days last week). I talk about what treatments have worked in the past and what I am trying now. And I included some nature footage, so you can enjoy the sights and sounds of nature, too. You can watch it on YouTube or here:

And if you enjoy nature--or want to improve your health!--I will also include my recent outdoor vlog from our last camping trip of the season, at Trap Pond State Park in Delaware, with beautiful fall foliage. Enjoy the peaceful, soothing videos and photos on YouTube or here:

Did you know that scientific research shows that just looking at pictures or videos of nature has measurable positive effects on both mental and physical health? It even improves immune function! So, enjoy this brief respite in nature. Then, open your window or go outside, if you can manage it, to experience nature in your own backyard (or porch or patio or balcony). I'm in my reclining chair on the deck as I type this. It always calms me and makes me feel better.

How was YOUR week?

And how do you enjoy nature?

Please let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Movie Review: My Old Ass

I'd heard about this new movie with the funny name on Pop Culture Happy Hour podcast, where all the hosts and guests were enthusiastic about it. Plus, it stars our tiny state's hottest star, Aubrey Plaza. So, when my husband and I heard this weekend that My Old Ass was now on Amazon Prime, we decided to watch it. It exceeded our expectations!

Eighteen-year-old Elliott, played by Maisy Stella, loves her family and friends, but she can't wait to leave her tiny hometown and her family's cranberry farm in rural Ontario. In just three weeks, she heads off to the University of Toronto, and she can't wait for her real life to start. Elliott and her two best friends, Ruthie and Ro, go camping one night on an island (where they live, on a series of lakes, they get around mostly by boat). In a last hurrah, Ro has secured some hallucinogenic mushrooms. They each take them around the campfire, and the other two girls seem to be enjoying themselves, while Elliott thinks nothing's happening for her. Then her 39-year-old self, played by Aubrey Plaza, appears next to her on the log. The two of them talk long into the night, and though older Elliott doesn't want to mess anything up, when pressed by young Elliott, she finally gives her some advice and adds a cryptic warning. That encounter (and others that follow) changes Elliott's immediate life in ways she never could have imagined.

We both loved this coming-of-age movie! Yes, it's an odd premise (Aubrey kind of specializes in quirky), but it is executed perfectly. The cast is great, especially Maisy Stella as young Elliott, the writing is top-notch, and the cinematography is wonderful. The setting was so gorgeous that I looked up where it was filmed: Muskoka Lakes, Ontario. It is billed as a comedy, and we both laughed plenty throughout the movie, but at the end, we were both crying (in a good way). It's beautiful, funny, heartwarming, and moving. Highly recommended (so much so that I felt compelled to review it after saying I wasn't going to write any more movie reviews!).

Currently available on Amazon Prime.

I'm grinning again just watching the trailer!

Weekly Inspiration: Books, TV, and Movies to Tickle Your Funny Bone

Hey, chronic illness spoonie friends! Earlier today, I was updating and sharing an older post of mine from 2019, Weekly Inspiration: Laugh!, when I realized it's been a long time since I've written a new Weekly Inspiration post and I could really use some laughs right now. 

After feeling the best I have felt in years during the first six months of this year (not a single crash day!), getting COVID in July, and slowly crawling my way back from that over the next three months, I was doing pretty well by September and back to enjoying some camping trips with my husband. But for the past three weeks, I've had flu-like aches every day, which tells me my immune system is overreacting to something, most likely a flare-up of yeast overgrowth again. I've gone back to a super-strict diet with almost zero carbs to try to get control of it again, but between that and the state of the outside world, I'm feeling pretty discouraged. 

The prescription? Laughter! As I explained in that older post, laughter has very real physical health benefits ... and it just makes you feel good! So check out the hilarious video clips and funny TV, movie, and book recommendations I made in that old post. And here are some more current recommendations for TV shows, movies, and books that will tickle your funny bone and make you LOL.

 

Funny TV Shows

My husband isn't big on straight-up comedies on TV (though my sons and I love to laugh over episodes of Bob's Burgers or The Office), but we both love to watch TV shows that combine a great sense of humor with drama or suspense. Here are some of our favorites, reviewed in the past two years (links to my reviews with trailers), that make us laugh out loud:

The Diplomat - It's the perfect time time to remind you of this outstanding show that has it all because it just returned for its second season on Netflix. It's got loads of suspense and international intrigue, but it's also so hilarious that we often had to pause and go back a bit because we were laughing so hard we missed a few lines! Great writing & acting.

Somebody Somewhere - This HBO Max show is so great that we watched all three seasons in record time. It's laugh-out-loud funny, but with great emotional depth and plenty of heart. Not for the easily offended--nothing is off-limits in this show!

Shrinking - Another wonderful show just back for its second season, on Apple TV. Starring Jason Segel and Harrison Ford as therapists who work in the same office. It's another show that delves into deep issues like grief but with a great sense of humor. It shares some creative DNA with Ted Lasso, and it shows with the same blend of heartwarming drama and laugh-out-loud moments. If you didn't think Harrison Ford was funny, wait till you see him in this role!

Poker Face - This fun, twisty mystery series is built around its main character, played by Natasha Lyonne, so besides suspense, you also get plenty of clever wit. On Peacock - we're still waiting for season 2!

 

Funny Movies

Again, my husband isn't much for straight-up silly comedies (and honestly, neither am I), so our favorite movies that make us laugh always have other elements. Here are some we've enjoyed that were funny:

Hit Man - this 2024 Netflix movies defies categorization: it's kind of a romantic thriller comedy. It's based on a true story of a man who helped the police department by occasionally pretending to be a hit man, so they could arrest whoever hired him. Twisty, suspenseful, action-packed, and funny. Just a lot of fun!

American Fiction - Nominated for a Best Picture Oscar and with one of the highest ratings on Rotten Tomatoes, we loved this movie! It's very funny, but it's also poignant, heartwarming, and thoughtful. Highly recommended.
 

Flora and Son - This heartwarming, funny movie about a mother and son connecting through music is uplifting and delightful. It will leave you smiling.

 

Funny Books

Apparently, I haven't been reading many funny books lately, based on my recent reviews. I love a book with a sense of humor, but my favorites are often books that will make me both laugh and cry ... and that's not really my purpose here. So, I'll include some recent reads but also some from a bit further back that are guaranteed to make you laugh. And definitely check out that old post because it did include some great books.

Why We Read: On Bookworms, Libraries, and Just One More Page Before Lights Out by Shannon Reed - In this funny, comforting, informative memoir, the author talks about her experiences reading and teaching literature in both high school and college. I was often nodding along or laughing out loud.

Remarkably Bright Creatures by Shelby Van Pelt - This heartwarming story is about connections, loss, and family. It has great characters and an excellent sense of humor.

The Verifiers by Jane Pek - This debut novel is a fun, suspenseful mystery with a great sense of humor. And book two, The Rivals, just came out!

 

What TV shows, movies, and books make YOU laugh?

I'd love to hear about them!

Please share your own recommendations in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Excellent Medical Explanation of Exertion Intolerance (PEM) in ME/CFS & Long-COVID

I was crashed today, for mysterious reasons only my body understands, so I settled in to watch a video I bookmarked ages ago: Dr. Todd Davenport speaking on Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE) in 2022 at the San Diego Pain Summit. PESE or PEM is the hallmark symptom of ME/CFS and now, long-COVID, but so few doctors know about it or understand it. This conference seems to be focused on medical professionals and especially physical therapists, and Todd's talk provides a much-needed medical explanation to this audience as to why exercise--that may be good for other conditions--is harmful to those with ME/CFS and long-COVID.

PESE is such a far better term than Post-Exertional Malaise (PEM). Anyone who has spent days, weeks or even months pinned to their couch or bed simply from taking a walk or going to the store or attempting to make a meal for themselves knows that "malaise" is such an inadequate word for the total decimation we experience after even mild exertion.

Todd's talk at the Pain Summit is a fascinating exploration of the medical and physiological basis for PESE/PEM. He shows data that proves that the PESE experienced by ME patients is completely different than the way that deconditioned people react after exercise. This would be excellent to share with any medical professionals, including doctors who suggest graded exercise therapy (GET) and physical therapists who work with any patients with ME/CFS or long-COVID. Todd has also included the research study references that back up his data, for anyone who wants to learn more (or for doctors who don't want to watch the video--I recommend copying his scientific references and printing the list for your own doctors or PTs).

You can watch Todd's excellent presentation, Insights on the Physiology of Post-Exertional Symptom Exacerbation (PESE), on YouTube (with the references listed below in the notes - click on "... more" below the video). (Note that I normally include videos in the body of my blog posts, but this one is unavailable for embedding that way, so it has to be watched at the YouTube link.)

If you have ME/CFS or long-COVID and are going to physical therapy for any reason, like an injury or rehab after surgery (hopefully not as a "treatment" for your disease), I also recommend printing my Guidelines for PT for Patients with ME/CFS or Long-COVID (it includes a PDF document you can print and take to your PT), which will educate your physical therapist on the basics of PEM/PESE and how to work with you safely, without exacerbating your symptoms.

I had the pleasure of "meeting" Todd (virtually) when we were both invited to speak in a webinar hosted by Physios for ME, a UK organization of physical therapists who work with ME patients, called Heart Rate Monitoring for Post-Viral Fatigue Syndrome and Myalgic Encephalomyelitis. Todd spoke during Part 1 which explained the medical/scientific basis for PEM/PESE and the usefulness of heart rate monitoring, and I spoke during Part 2, which featured patient experiences using a heart rate monitor.

You might also find useful my post on Heart Rate and Post-Exertional Crashes, which explains in simple terms why monitoring heart rate can help to prevent crashes and how to calculate an estimate of your personal limits, and my article, Using a Heart Rate Monitor to Prevent Post-Exertional Malaise in ME/CFS (it also applies to long-COVID, though I wrote it before 2020).

I hope you find this information helpful for you and your doctor.

Do you use a heart rate monitor?

Do you practice pacing, staying below your anaerobic threshold?

Please share your own experiences in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.