SEPTEMBER NEWSLETTER
Welcome to the September 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
It has now been 8 weeks since my COVID infection in early July (my second one), and I am still not back to my baseline, which was remarkably well the first six months of this year, thanks to correcting thyroid dysfunction and changing my diet to treat yeast overgrowth. The first time I got COVID, in January 2022, it took me six months to recover, and I think I'm on a better trajectory this time, thanks to Paxlovid (and perhaps my good starting point). But I still need more sleep than usual, often feel worn out, and have much more limited stamina than is normal for me. By treating Orthostatic Intolerance, correcting sleep dysfunction, and treating immune dysfunction (all years ago), I was able to tolerate a fair amount of exertion (for someone with ME/CFS). I'm finding now that even mild exertion can wipe me out. I have a phone appointment with my ME/CFS specialist next week, so I'll see if she has any ideas.
August was busy, though. We traveled to Long Island to celebrate our son's 30th birthday (how is that possible?) and meet his girlfriend's family for the first time. I managed that fairly well, and we enjoyed the weekend. I was disappointed, though, to find out before that weekend that--once again--I hardly made any antibodies from my COVID infection, so I am still at very high risk for re-infection. I don't know why I expected anything different, but it was upsetting to see those low numbers again.
We had to cancel a two-week vacation in July/August, so last week, we got our camper out for a quiet, mid-week trip to a beautiful state park in the Poconos in Pennsylvania, about three hours from home. It was a much-needed respite for both of us with lots of laid-back time resting and reading. We did do one active thing each morning, for about an hour (short walks and kayaking), which I can normally tolerate well, but this time, each of those things wiped me out. Luckily, I had nothing to do but lie in my lounge chair, nap, and sleep 11 hours a night!
Book Quote of the Month
“Visiting every morning is part of the New Normal, which is what I call what happens when your universe is shaken so badly you can never regain the same axis as before. But you try anyway.”
---from The Firekeeper's Daughter by Angeline Boulley, a fabulous mystery/thriller with great emotional depth, set against a fascinating cultural background. The quote is from the main character, a 18-year-old young woman whose mother is of French/Italian descent and whose father was Ojibwe. She's talking about life after the death of a loved one and the serious illness of her grandmother. I was amused to see my own book title pop up in this excellent novel and thought the concept was explained well here. You can read my review of the book and listen to a sample of the audio on my book blog.
From My Book
"June 4, 2003 -
When will I stop thinking of my pre-illness life as "normal"? I guess that would be the sign of true acceptance. But I'm not sure I want to be that accepting! I don't want to forget "the old me" (what I still think of as the real me).
It's a constant internal struggle. If I truly accept this illness as part of me, does that mean I give up all hope of recovery? Yet, if I refuse to accept my new limitations, then I am sentencing myself to continue relapsing."
I wrote that entry in my journal a little over a year after becoming ill with ME/CFS, shortly after being diagnosed. I was struggling to accept this "new normal" and to come to terms with the possibility of never recovering. Now, many years into living with chronic illness, I am happy in my post-illness life. However, balancing acceptance and hope is still an ongoing goal.
As I wrote in that journal entry, there seems to be a dichotomy between the two. Does accepting your current situation mean you are giving up hope of ever getting better? Does continuing to strive to improve your condition mean you won’t find peace or you will keep relapsing?
It is difficult at first, but acceptance and hope can co-exist peacefully. Here’s how."
---from Finding a New Normal: Living Your Best Life with Chronic Illness, in the chapter, Balancing Hope and Acceptance, available everywhere (links here). In the rest of that chapter, I include practical tips for finding that tricky balance in your own life with chronic illness. After all these years, I still find that journal excerpt at the beginning heart-wrenching, with the raw pain I was feeling and the struggle to come to terms with my new life of being chronically ill. Accepting my limitations has been even more important this summer, since getting COVID again.
A Look Back
From my blog in September 2013: Giving Up, Giving In. In this thoughtful post, I consider all the pressure in our society to "never give up," and how it is different when you have chronic illness and are fighting against your body's needs. Giving in is not the same as giving up. This short post is still just as relatable and relevant to me today.
Recent Videos
My Answers to Your Questions, Part 1: General Questions - to celebrate hitting 1000 subscribers this spring, I asked for questions, and got lots of great ones! In this first part, I answer questions about travel, the outdoors, where I've lived, what I like to drink, and more.
My Answers to Your Questions, Part 2: Books! - in part 2 of my Ask Me Anything videos, I answer questions about books, including my all-time favorites!
My Answers to Your Questions, Part 3: Chronic Illness - this one focuses on chronic illness questions, including my diagnoses, diet and weight loss, treatments that have helped, and more.
Connect with me on:
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This message was published Thursday, September 5th 2024 at 6:10PM Eastern Standard Time (US)
Live with ME/CFS Blog