July Newsletter
Welcome to the July 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
I ended up skipping the June newsletter, in part due to technical difficulties with follow.it's software but also because I was SO busy this past month! We had three trips in a row in June, plus visits from our son and his girlfriend at the start (in May) and end of their amazing month-long road trip across the U.S. This was a special victory, since this is the son who still has ME/CFS and three different tick infections. He is well enough now that he managed their big trip (his girlfriend has some similar health issues, so they're great support for each other) and after returning home, started a full-time job last week. He turns 30 next month and has been sick since age 10, so we are thrilled that he is doing so well and truly on his way to being independent now.
As for my husband and I, we babysat their guinea pig for a month! Queso is a very sweet pet, and we enjoyed caring for him. We took him with us to Connecticut to attend a graduation party for our nephew and niece. The following weekend, after our son returned from his trip, the four of us traveled to Virginia for the wedding of one of his oldest friends (since age 5). We were so happy to be a part of the occasion and had a wonderful time at the wedding. I even danced (with my heart rate monitor on!), was up until 11:30 pm, and did not crash the next day!
During the past month, we also bought a new-to-us camper that has more amenities than our 26-year-old pop-up camper. We took it out on its maiden voyage last week, for a 5-day camping trip to Hickory Run State Park in PA. It's a beautiful park, with great hikes, waterfalls, small lakes, and a 16-acre boulder field that's a National Natural Landmark. We also enjoyed a trip into the nearby town of Jim Thorpe and a ride on the Lehigh Gorge Scenic Railway. It was a wonderfully relaxing week, and having our own bathroom in the camper is a game-changer for me! Without all those walks back and forth to the restrooms, I could use my energy for the fun stuff! Check out my video vlog of the trip.
Book Quotes of the Month
Two short quotes that resonated with me from My Beloved Life, a novel by Amitava Kumar:
“Tragedy is a demon that has a tail attached to it. The tail is the lesson that you are supposed to draw from the tragedy. This is the truth that civilization has recognized through the ages so that you don’t feel robbed of everything.”
“They had survived whatever fate had thrown at them. … Life is long and the real wealth is time; you have to fight to not let it slip away. He must not abandon faith or squander his days. That ought to be life’s goal.”
--- from My Beloved Life by Amitava Kumar, a beautifully written novel about the life of an ordinary man, beginning in India in 1935. It's set against the backdrop of all the amazing historical events that happened during his lifetime, and you also get the perspective of his daughter. This was a Booktopia selection, and I really enjoyed it. You can read my review of the book and listen to a sample of the audio on my book blog.
Youtube Channel of the Month
In the past two months, as I was watching book videos (fondly known as "Booktube"), I discovered a fellow ME/CFS patient! Michele Lynn Reads mostly makes book/reading videos (which are great!), but she also occasionally posts a video about living with chronic illness, like Chronic Illness Chat #1: Spoonies. So, check out her channel, and tell her I sent you!
(Interestingly, I've discovered quite a few Booktubers who also have chronic illnesses/disabilities.)
From My Book
Now that we are well into summer, today's book excerpts come from the chapter, Summertime ... And the Livin' Is Easy (Or Is It?):
"The classic view of summer--for normal, healthy people--is that it is a time of relaxation and fun, with long, easy days of leisure and exciting vacations. When you are chronically ill, though, the lazy days of summer can come with all kinds of extra challenges. They can bring some unexpected pleasures, too.
Let's take a look at some of the season's common challenges and ways to work around those challenges so you can make the most of your summer."
... "Of course, having a pleasant summer isn't only about avoiding and minimizing challenges and struggles. It's also about taking advantage of the season's upsides--warm weather, time off work and school, more daylight, summer-only events, etc. Following are some of the pleasures of summer that you can indulge in."
... "Summer is the season for rest, relaxation, and recreation. So, stay cool, pace yourself, relax, and enjoy this season of summer fun. It doesn't last long, so make the best of it!"
---from Finding a New Normal: Living Your Best Life with Chronic Illness, available everywhere (links here). The rest of that chapter includes specific tips and ideas on how to manage the challenges of summer, including kids out of school, high heat and humidity, and travel, plus ideas on how to actually enjoy your summer, even when severely limited. Personally, I am very heat-intolerant now, so I find summer difficult, but the tips here remind me to make the best of the season!
By the way, I spent June recording my audio book! I just have a few chapters left to go--and then a lot of editing!--but it should be out by the end of the year.
A Look Back
From my blog, July 15, 2009:
At that time, we had two young sons with ME/CFS, and in this post, I explained how much easier summer was without having to worry about school, absences, and make-up work. I'm sure anyone with kids with chronic illness will be able to relate! It's interesting to read my thoughts from 15 (!) years ago. With our sons grown now, I don't often think about just how difficult and stressful it was trying to manage school. I'm glad that's all behind us! If you do have sick kids, be sure to check out my many posts on School Accommodations (that post directs you to all of them) in August, before school starts again! Lots of practical tips there to get your kids the help and support they need.
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 5-13-24: Bit of a bump but still doing well!
30 Great Book Recommendations about Spoonies - all of these books that I've enjoyed (in a wide range of types & genres) are either written by or feature characters with chronic illness and disabilities (including many with ME/CFS).
Big Book Summer Challenge 2024 - now in its 12th year, my annual reading event is open to anyone, anywhere! A "big book" is any book with 400 or more pages (including audios, middle-grade, YA, graphic novels - anything), you set your own goals, and you have all summer to meet them! Lots of spoonies enjoy it.
Chronic Illness Vlog 6-17-24: Busy June! Trips & Events but Still Managing Well
Travel and Camping Vlog: Hickory Run State Park and Jim Thorpe, PA
Connect with me on:
My blog: http://livewithcfs.blogspot.com
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This message was published Wednesday, July 3rd 2024 at 6:16PM Eastern Standard Time (US)
Live with ME/CFS Blog