Welcome to the August 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].

Please also let me know if there are any topics you'd like me to cover on my blog or in a video.

Life

If you've been following my blog or my YouTube channel, you know that July was eventful for me! I got COVID on July 13, and my life came to a standstill. I won't repeat everything I already wrote on the blog (2-week update at the link), but I was concerned because the first time I got COVID, in January 2022, it took me six months to recover and finally get back to my "normal" baseline. Thankfully, things are looking much better this time! I was able to take Paxlovid, which I think helped tremendously, as well as just generally being in very good shape when it struck. In fact, I had just posted my victorious 7 Months Without a Crash post (ah, the irony!).

Now, about 4 weeks since the infection, I am doing remarkably well! I'm not fully back to my baseline yet, but I have seen huge improvements this past week. I've been able to start walking again (short walks) and even restarted some very light strengthening exercises yesterday. I'm able to sit upright all day again and am back to a fairly normal routine this week. On the plus side, I enjoyed a lot of reading during those rough weeks!

As I mentioned in my more recent post, I've also got two new treatments to try from my ME/CFS specialist that she and her colleagues have seen help other ME/CFS patients recover from COVID and to prevent long-COVID. I started one this week, and the other should arrive today. I just came from the lab, where I got some bloodwork she ordered, plus a COVID antibody test that I requested from her. I can't get the vaccines because when I got the first two, they made me much worse for six months and I hardly made any antibodies from them anyway. So, I am curious to see if actually getting the infection will provide me with some protection from reinfection for a few months. This is a terrifying time we live in, for those with ME/CFS, with the threat of COVID ever-present and the rest of the world acting like it's no big deal. For now, I am happy to be back on my feet and out in the world (a little).

Book Quote of the Month

“Time itself was a perversion—perhaps the greatest one of all. In the end, everything got broken. Everyone was wounded. Why, then, did some part of her wish to remain here, on this violent planet? And then she remembered. Beauty.”

---from Honey by Victor Lodato, the newest novel from one of my favorite authors. When he sent me an early copy to review, he explained, "This novel is my whole heart," and it shows. I finished this beautiful novel with tears in my eyes and hugged it to my chest. The main character is eighty-something Honey who is grappling with aging and end-of-life issues (as in this quote, though I though it applied perfectly to life with chronic illness, too). This novel is about love, loss, aging, art, forgiveness, and second chances--it's about life, with all of its complexities, sorrows, and unexpected joys. You can read my review of the book and listen to a sample of the audio on my book blog.

From My Book

"During my first five years with ME/CFS, I saw a wonderful psychologist who specialized in chronic illness. Her favorite question—often asked at each visit—was, “What are you looking forward to?” She explained to me that it had two purposes.

First, she thought this question was the perfect test to differentiate clinical depression from other kinds of chronic illness. Since her own grown son had ME/CFS, it infuriated her that medical professionals—including many of her own colleagues—were constantly questioning whether ME/CFS was really depression (this was in the early 2000s). She said if she asked the question to someone who was clinically depressed, he or she usually could not come up with anything they were looking forward to and, in fact, didn’t want to do anything. In contrast, she said that when she asked this question of someone living with a different chronic illness, he or she would usually respond with a long list of things they wanted to do, if only they could.

The second purpose of her question was to get her chronically ill patients looking forward and thinking about the good things in their lives. When you get to the point where you are “sick of feeling sick” (as we all do), this question prompts you to take a step back from the intricacies of your daily symptoms and to think of your life in broader terms. What’s going on in your life? What is coming up with your friends and family? What kind of good things are you looking forward to?"

---from Finding a New Normal: Living Your Best Life with Chronic Illness, in the chapter, What Are You Looking Forward To?" available everywhere (links here). In the rest of that chapter, I explain how I use that question in my own life, with tips on how you can do the same, especially during those times when it seems that every day is the same and there is nothing to look forward to. I found myself thinking of this question a lot this past month, as a struggled to recover from COVID.

A Look Back

From my blog, August 2, 2012 - rereading this post about our son getting ready for college left me in tears, but it has a happy ending: Grieving Losses and Moving On ... Again. It describes our sorrow and struggles to get our son ready for college after he was extremely ill his senior year of high school and our challenges with the university Disability office (and overcoming those).

If you have a chronically ill school-age child (of any age, from preschool to college/university), please check out my collection of posts on School Accommodations for Sick Kids. It is loaded with practical information to help your kids at every stage of their education.

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, and about travel. The chronic illness vlogs are an honest, realistic look at my daily life over the course of a week, with all its ups and downs! Let me know if there are any specific topics you'd like covered in a video (or blog post).

Chronic Illness Vlog 7-29-24: COVID and ME/CFS - Small Improvements, Small Joys

Connect with me on:

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