My Life

I can sum up the entire month of September with one word ... crashed! I've been stuck in a very severe relapse that started 7 weeks ago but worsened considerably the past month. A significant shift in hormones, due to a medication change, was probably the initial trigger (also causing near-constant headaches, which has been fun), but as is typical for this disease, I suspect there was a domino effect, eventually resulting in my immune system being stuck in a very over-reactive state. I've had horrible flu-like aches for many weeks.

None of my usual treatments were helping, so I've been working with my ME/CFS specialist. The first thing I tried didn't help at all, but now I am on a treatment protocol related to lingering COVID effects. Whether that protocol is working or enough time finally passed for my system to "normalize" on its own, I have finally started feeling a bit better the past few days. I've been able to not only leave the couch but even leave the house for short outings. So, fingers crossed this improvement continues, and I get back to my normal (for me) baseline. Today (Sept. 30) is our 33rd anniversary, and I am thrilled to be able to manage dinner out with my husband tonight. [Oct 1 update: Ugh - woke up achy with a severe headache again. But I did a lot yesterday and the remnants of the tropical storm are here. Resting today.]

Quote of the Month

"Of all the emotions, hope was the most mysterious. It grew like the blue lotus, snaking up from muddy hearts, beautiful while it lasted."

"Oh, Ana. When I tell you all shall be well, I don't mean that life won't bring you tragedy. Life will be life. I only mean you will be well in spite of it. All shall be well, no matter what."

-from The Book of Longings by Sue Monk Kidd

My entire book group enjoyed this historical fiction focused on women in the first century. You can read my full review and listen to a sample of the audio book here.

Blog of the Month

I have enjoyed the Despite Pain blog, written by Liz, for a long time, and she recently asked me to write a guest post for her blog. My post, Finding a New Normal, was published on her blog last month. Liz's latest post is In Sickness and In Health - Celebrating 30 Years Together, and it's all about the joys and challenges of chronic illness and pain for both partners in a relationship. Check out Liz's wonderful blog, leave a comment, and tell her I sent you!

YouTuber of the Month

I just recently discovered Survival of the Fatigued on YouTube, and I love her very creative, fun videos that can make you laugh while also being informative. She's got a wide range of videos that are relatable, interesting, and fun! Check out her videos and take a moment to Like (the thumbs up button), comment, and subscribe to her channel.

From My Book

"When I first became sick with ME/CFS, it was like a curtain was pulled back on a hidden world I never before knew existed. One of the most important things my years of chronic illness have taught me is that everyone has their own challenges, and they are often invisible to those around them. Over the years, I have been surprised again and again to discover that people around me—both new acquaintances and old friends—are dealing with tough stuff behind the scenes. Recognizing this hidden world of invisible suffering has enriched my life, making me a more empathetic and compassionate person and improving my personal relationships."

-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 so 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 9-4-22: Crashed! And Med Changes

Chronic Illness Vlog 9-11-22: Treatments, a Better Week & Another Crash

Chronic Illness Vlog 9-25-22: Still Badly Crashed ... But an Outing!

Blog Posts Last Month

Here are the new blog posts I wrote last month (besides the ones sharing videos), in case you missed anything:

Weekly Inspiration: Having Fun Improves Health - a great TED Talk inspired me to have more fun

Movie Monday: The Lost City - speaking of fun, this action-packed romcom is hilarious and pure fun!

Finding a New Normal: Happiness and Satisfaction in a Life with Chronic Illness - links to two guest posts I recently wrote for other blogs

TV Tuesday: Fall TV Preview - an overview of our favorite shows this fall: old ones returning & trailers for new ones we plan to try

Connect with me on:

My blog: http://livewithcfs.blogspot.com

Twitter: https://twitter.com/livewithmecfs

Facebook: https://www.facebook.com/livewithmecfs

YouTube: https://www.youtube.com/c/SueJacksonDE

LinkedIn: https://www.linkedin.com/in/suzan-jackson-8436878/