March Newsletter
Welcome to the March 2024 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
The past month has been really great! As I reported in last month's newsletter, my condition (which was awful at the end of last year) improved significantly with a drastic change to my diet at the start of the year. That finally got my yeast overgrowth under control (a very common issue in ME/CFS, long-COVID, and Lyme) and eliminated those awful flu-like aches, the heavy fatigue, and the severe exertion intolerance. My current diet is about the same as I reported in this video on carnivore and keto diets: about 97% carnivore (meat, fish, eggs, butter), with a few bites of non-yeast-feeding veggies and/or avocado each day. Another major factor in feeling so good is that I spent a full year working with my doctor to normalize my thyroid function. I just couldn't see the full benefits of that until I got the yeast overgrowth under control. That's the way it is with these complex immune disorders; sometimes you can't see the benefits of one treatment until you tackle another aspect of the disease.
As a result of these major improvements, I am feeling the best I have felt in many years! I am living my life again, out in the world, seeing friends, walking almost every day, going shopping, resuming some light strength training, and more. Obviously, I still have ME/CFS--still need 9-10 hours of sleep a night, plus my afternoon nap, and still limited in what I can do compared to a healthy person--but I am functioning quite well and able to live my life. I also lost 22 pounds in the past 15 months or so, due to treating hypothyroidism (about 19 pounds) and the diet change (another 3 pounds). My husband switched to a keto diet in January and has already lost 16 pounds. It's a good thing I am able to go shopping now because none of my clothes fit anymore!
So, what does living my life again mean? I had a very busy month in February. I've seen friends (even in the evening!) 6 times, I've been walking 5-7 days a week, and we made a trip to Texas for our great-niece's wedding. That was a big victory: lots of long walks through airports, a couple of short hikes while we were there, time with family, enjoyed the wedding and reception, and didn't need wheelchair assistance in the airports. Through all of this very busy month, I have not crashed from over-exertion at all, not even after a fast-paced 2 hours of walking at the Houston airport!
Book Quote of the Month
“General Hospital [in a video game] was based on every hospital he’d ever stayed in, and Alice’s illness and treatment, which comprised many of Mapletown’s side quests and levels, was given the kind of corpuscular detail that could only have come from someone who had been chronically ill and understood the indignities of hospital life. In the fourth level, for example, Alice, after a major operation, becomes separated from her body, and she has to chase through the hospital to catch it, like Peter Pan and his shadow. This dissociation was something that Sam had experienced many times—the feeling that your body, when it was sick, was no longer your own.
… Throughout his life, Sam had hated being told to “fight,” as if sickness were a character failing. Illness could not be defeated, no matter how hard you fought, and pain, once it had you in its grasp, was transformational.”
---from the novel Tomorrow, and Tomorrow, and Tomorrow by Gabrielle Zevin, a story of a lifelong friendship with all of its ups and downs. Sam, one of the main characters, lives with chronic pain (and had many surgeries), and in this passage, he explains how he wove that experience into the latest video game he designed. It's a beautifully written, immersive, and engrossing novel. You can read my full review at my book blog.
Blog of the Month
One of my favorite chronic illness blogs is Kate the (almost) Great. Kate is living with multiple chronic illness, including rheumatoid arthritis, POTS, fibro, and more (more on her illness history here). Her blog covers several topics, including blogging, living with chronic illness, and reading. She features a wide variety of informative and helpful posts on living with chronic illness. And last year, I wrote a Guest Post for her blog on The Restorative Power of Nature. So, check out her blog and tell her I sent you!
From My Book
"The song "Helter Skelter" (originally by the Beatles) often goes through my mind when I shift from feeling fine one day to very sick the next. It resonates with my sense of climbing up only to find myself sliding back down again. For those of us with chronic illness, life is often like a rollercoaster. Not everyone experiences the same physical ups and downs; some people feel about the same every day. All of us with chronic illness, however, live with an emotional rollercoaster.
... I am generally a very happy, optimistic person. That's just my natural temperament, and I am usually content with my life, even with chronic illness. I've made peace with my new normal and accept my limitations; I've learned to find joy and contentment within my restricted life. Every once in a while, though, I find myself back on the emotional rollercoaster. Despair will hit me with the force of tidal wave. I'll suddenly feel depressed, abandoned, and like a failure. I'll cry and grieve over all the things I can no longer do. This dark state of mind might last for a day or two, and then I gradually come back to my normal happy self.
... So, what helps when I hit bottom?
Following are some coping mechanisms I've developed to help steady and lift my spirits when despair drags me down."
--- from the chapter Riding the Chronic Illness Rollercoaster in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, available everywhere (links here).
A Look Back on the Blog
For me, early March holds a special significance because I first became ill on March 2, 2002. That's 22 years ago now! It's both hard to believe I've been sick for 22 years, but it also just feels like a "normal" part of my life now. I barely remember what it was like to not have ME/CFS! In this March 2, 2018 post, Flashback Friday: 16 Years Ago Today, I looked back on 16 years of illness, and how my "illiversary" affected me differently over the years.
How long have YOU been sick?
Did it begin abruptly on a single date?
If so, how do you feel about your illiversary?
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. Last month was mostly book videos, which is another indication that I felt so much better!)
My Experiences with Carnivore Diet - First Three Weeks - what it is, why I'm trying it, what we eat, and results so far.
Texas Trip Vlog: Traveling with Chronic Illness - videos & photos from our trip, with details of what helps me when traveling.
Connect with me on:
My blog: http://livewithcfs.blogspot.com
Twitter: https://twitter.com/livewithmecfs
Facebook: https://www.facebook.com/livewithmecfs
This message was published Wednesday, February 28th 2024 at 7:31PM Eastern Standard Time (US)
Live with ME/CFS Blog