November Newsletter

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My Life

Well, October was certainly better than September, though I am still far from my normal level of functioning. My relapse that began in mid-August continues. I've been meaning to write a full blog post about it, but I just have not had the time/energy. Looking back (I track how I feel each day with a simple 1 to 5 rating), I can see that I was badly crashed--debilitated and unable to do anything--77% of the time in September! I lived it, so I knew it was bad, but somehow seeing the number is still shocking to me. It was one of my worst months ever since getting ME/CFS 20 years ago.

I saw small, gradual improvements in October. This relapse seemed to be triggered initially by stopping birth control pills, which I took until I was fully past menopause simply to keep my hormone levels steady. I knew it would be difficult coming off it, but I never expected it to be this bad! I spoke with my doctor two weeks ago, and she put me on a low dose of estrogen (hormone replacement therapy). Since then, the headaches are much better, and my energy is better, but I am still plagued by constant flu-like aches. That tells me my immune system is still a mess and over-reacting.

My husband retired at the end of September, and I temporarily lost my health insurance. I finally got my new card in the mail this week--yay!!--so now I can get some long overdue labs that my ME/CFS specialist requested over a month ago. I'm hoping she has some ideas and things continue to improve because the holiday season is quickly approaching! I can't even imagine attempting family gatherings (and travel) for Thanksgiving and hosting Christmas in this shape. But I am grateful that I am now able to sit up, propped up on the couch, and write, and I have gotten out of the house a few times and actually had some fun! Baby steps. Here's a photo of us with our son and his girlfriend, visiting a farm market last weekend for our annual Halloween visit for pumpkins, cider, and hot, fresh apple cider donuts.

Quotes of the Month

-From Six Walks: In the Footsteps of Henry David Thoreau by Ben Shattuck, a memoir about the author's own experiences (including with Lyme disease), as well as Thoreau's, with beautiful nature writing. I loved this book. You can read my full review here.

When the author visited Walden and was mistaken for a Henry David Thoreau reenacter:

"I admit I was likely hollow-eyed, staring at nothing or at the floor--such were the days with antibiotics and Lyme disease, which had only worsened. I had a beard then, too, and long hair, because I'd given up shaving or getting haircuts under the dulling effects bad health has on grooming."

"... walking through the dark forest, you might eventually look up through the trees, see that the sky above is the same as the sky over the sunny pasture, that it is one canopy of light spread over your whole life's landscape. Grief and joy are in the same life, but it's only in the forest where you notice the shafts of sunlight spilling through."

From Thoreau's journals:

"My soul and body have tottered along together of late, tripping and hindering one another."

Blog of the Month

I always enjoy the posts on the blog, My Rockin Disabled Life. The author has spina bifida, but she writes a wide variety of posts relevant to anyone living with chronic disabilities. She also features lots of guest posts from others with different conditions. Last month, she featured my guest post, Finding Happiness and Satisfaction in a Life with Chronic Illness. So, check out her blog, leave a comment, and tell her I sent you!

YouTuber of the Month

I have known Julie Holliday of The ME CFS Holistic Coach (both video channel and blog) for years; we both used to write for the ProHealth website, and she was my editor there for a while. Julie's YouTube channel features lots of short, inspirational videos on topics like self-worth, peace, and mindfulness. She also recently started a podcast, Spoonies with Purpose, featuring interviews with those with chronic illness, including me! Her channel includes all of that great content, so check it out and leave a comment for her.

From My Book

"Life with chronic illness is always challenging, but I have discovered some silver linings since my sons and I got sick. Although I’ve always been an upbeat person, chronic illness has made me more acutely aware of how important it is to find happiness in my everyday life, even when things seem bleak. I’m not always able to do the big things I used to love—like vacations, long hikes, backpacking, and lots of socializing—but I have learned that ordinary life holds many extraordinary moments of small joys."

-from Finding a New Normal: Living Your Best Life with Chronic Illness, available everywhere (links here)

My Videos Last Month

You can see my chronic illness playlist and my other videos about books and reading on my YouTube channel. Last month, because I was still pretty sick, my only chronic illness videos were Chronic Illness Vlogs, short video clips of my real life (the good, the bad, and the ugly!):

Chronic Illness Vlog 10-2-22: Starting to See Improvements!

Chronic Illness Vlog 10-16-22 and Lake Vacation - including some lovely fall nature videos & photos

Chronic Illness Vlog 10-31-22 and Happy Halloween!