September Newsletter

Welcome to the September 2023 Newsletter for the Live with ME/CFS blog.

Let me know what you think, what you'd like to see in the next newsletter, or if you have any comments or questions at [email protected].

Life

August was ... hot. And a struggle. I continued to battle a flare-up of chronic yeast overgrowth (very common in ME/CFS and long-COVID due to our immune dysfunction), in spite of the extra-strong antifungals my doctor prescribed for a month. So, I continued the very strict diet, loads of probiotics (of the right types), and extra herbal antifungals, and things did improve somewhat. But, my energy remained low, and I could still see some thrush on my tongue. (Note that I thoroughly updated my blog post on treating yeast overgrowth/candida based on new research and what helped, as well as my recipes for no-sugar chocolate treats and a delicious Paleo chocolate smoothie.)

Then, last weekend, I had a lightbulb moment. Clearly, with all the treatments I was on for yeast overgrowth and only minimal improvement, the root cause of the issue was in my immune system (everything in ME/CFS comes back to immune dysfunction). About a year ago, I stopped taking inosine because my immune system was stuck in an over-reacting state, and that helped. Now, it seemed to need a boost, and I realized that going back on inosine could help. As an immune modulator, inosine helps to normalize the immune system, but you have to keep changing its dose (and taking breaks periodically) to keep it working. So, I started back on it Monday--just a half pill in the morning, Monday through Friday. Guess what? I felt so much better this week! My energy was great, and my tongue felt better. What a relief! Here's more information on inosine, an inexpensive and readily available treatment that has helped my son and I tremendously over the past 12 years or so.

My favorite spot this summer:

Quote of the Month

From the novel Voyager by Diana Gabaldon, book 3 in her Outlander series:

“Over the next few days, a routine set in, as it does in even the most desperate circumstances, provided they continue long enough.”

“To fight disease without medicine is to push against a shadow; a darkness that spreads as inexorably as night.”

--These two quotes were from Claire, the main character, a 20th century doctor who is stuck in the 18th century and trying to get a typhoid outbreak on a ship under control. Both reminded me of the battles we face every day living with chronic illness. In the second quote, I was reminded of so many ME/CFS patients facing their very complex disease without the help of any real medical interventions from their doctors (in spite of the fact that many effective medical treatments do exist).

You can read my full review of Voyager on my book blog (or this review of Outlander, the first book in the series). It was one of my favorite books read this summer!

Blog of the Month

Claire write the blog Through the Fibro Flare, about her own experiences with fibromyalgia, MCAS, and orthostatic intolerance/dysautonomia. Her blog is thoughtful, well-written, and helpful. In her latest post, Preparing for the October Slide with Chronic Illness, she shares some thoughts on why many of us worsen in fall and winter, along with some great tips for taking care of yourself during these seasons. I have also written about the so-called October Slide and its roots in more exposure to infections in fall for those of us with immune disorders, so if you have ME/CFS or long-COVID, you can also check out my post The October Slide: ME/CFS and Infectious Triggers. Be sure to check out Claire's wonderful blog, and tell her I sent you!

Podcast of the Month

This month, I am highlighting an old favorite of mine, Everything Happens with Kate Bowler. This podcast is absolutely fabulous, often bringing me to tears and also making me laugh out loud in the same episode. Kate has been through some horrific health issues and is currently living with cancer. She interviews others dealing with medical issues (and other challenges) on her show, and she is compassionate and really funny. She highlights the absurdities in our chronic lives and debunks all those awful platitudes we hear (like, "everything happens for a reason"). I have often written about her podcast on my blog, and you absolutely must see her brilliant TED Talk (just 15 minutes long). Check out her podcast--she is just starting a new season, but go back and listen to her earlier seasons, too. I promise you will laugh and cry and feel like you have a new best friend!

From My Book

"Sometimes, you hear something at exactly the time you need it, and that was the case for me with this simple phrase: you're right where you need to be. It reminded me that during this crash/relapse, my job was to take care of myself and everything else could wait. It's hard to get out of the must-do mindset so prevalent in our modern world. Yet, this one line did that for me, making me stop and think instead of just reacting.

With respect to living with chronic illness, I've found that "you're right where you need to be" means the following:"

---excerpted from the introduction to the chapter "You're Right Where You need to Be" from my book, Finding a New Normal: Living Your Best Life with Chronic Illness, available everywhere (links here). In the rest of that chapter, I explain what that phrase means to me, including accepting where you are, giving in versus giving up, living in the present, and more.

My Recent Videos

(Note that these are my chronic illness videos; my Youtube channel also features videos about books, if you enjoy reading or listening to audio books.)

Spending the Weekend Trapped on the Couch (1-minute short)

Chronic Illness Update and Viral Triggers in ME/CFS (1-minute short)

Chronic Illness Vlog 8-14-23: Appointments, Doctors, and Medications, Oh, My!

Enjoying a Walk Along a Beautiful Creek (1-minute short) - turn up the volume!

Chronic Illness Tracking: Symptoms, Exertion, Treatments, and How I Feel