Friday, April 28, 2023

Milestone: Back on Vacation After More Than Three Years

Last week, we went on a week-long vacation for the first time since November 2019! The hiatus was due to a variety of factors: the pandemic, of course (though we vacation in our camper, so low-risk), caring for my father-in-law who had dementia, and the back-to-back relapses of my own illness the past few years.

I am finally feeling back to what I consider to be my normal baseline, where I can do more and enjoy both some physical activity and social interactions, and where severe post-exertional crashes are rare. 

In fact, I haven't had a severe crash day (let alone a week) since the end of February! Since my doctor made one last adjustment to my thyroid medications (info on thyroid testing here), I've actually been feeling quite good most days. To be clear, as with all treatments for ME/CFS, nothing is a miracle--I still need 9-10 hours of sleep a night and a nap every afternoon--but this is the best I've felt since early 2020.

(NOTE: For more information on how I was able to recover from those relapses and what helped, see my Relapses and Recoveries post).

So, back to our vacation! It was our first camping trip of the season, and we drove a bit south to Virginia, where we visited two beautiful state parks, one to the west, in the foothills, and one to the east, in the flatlands along a river that feeds into the Chesapeake Bay. The weather was perfect all week, and I was able to manage the extra daily walking (to the bathroom and back!), plus a short hike and two hour-long kayak excursions. It was a very quiet, relaxing week spent in nature with my husband. In addition, we started the week with a visit to my cousin near DC and ended the week with dinner out with an old college friend and her husband. All in all, it was a wonderful trip. 

This Vacation Vlog shows lots of video and photos of the natural beauty we experienced last week (studies show that just looking at pictures of nature improves mental and physical health, so enjoy!). You can watch it on YouTube or here, below:

See my post with lots of tips on Camping and Enjoying the Outdoors with ME/CFS. I also have tips for Air Travel with ME/CFS.

Are you able to enjoy a vacation? 

What are your tips for traveling with chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Friday, April 14, 2023

Chronic Illness Vlog 4-11-23: Busy Week, Mild Crash, Easter & Spring!

I haven't posted much here lately because life's been BUSY! That's a good thing in many ways because it means I am continuing to feel well. I can now say confidently that I am back to my baseline, where I was in 2019, which is pretty good. I am able to be more active, take walks again (yay!), and manage some social time without crashing. 

In  fact, we are preparing for our first week-long vacation since 2019!! That's not entirely because of my health (nor the pandemic), but due in large part to the fact that we were caring for my father-in-law who had dementia. However, I do feel excited about this trip, rather than worried, which is great! This is also our first time taking our camper out this year, and I am very much looking forward to the quiet, slow pace of a camping trip.

In my latest Chronic Illness Vlog, posted this week (recorded last week), I talk about having a busy schedule (too busy, as it turned out--I did have to leave my book group early and had a mild crash day), enjoying a wonderful Easter visit with my family, an update on my son's first full-time job (he's had ME/CFS since 2004), and as always, some lovely nature footage to immerse you in the sights and sounds of spring. You can watch it on Youtube or below:

I'll leave you with a view of what next week will be like for us!

How are YOU doing?

What was last week like for you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Thursday, April 06, 2023

Newly Updated: Effective Treatments for ME/CFS and Long-COVID

It's a busy week, and I've had a little crash today (from doing too much!). We're getting ready for a long road trip to visit my family in my hometown for Easter. So, I don't have much time, but I wanted to let you know about some important updates here on my blog.

I updated my page, Summary of Effective Treatments for ME/CFS and Long-COVID (you can use this link or click on the ME/CFS Treatments tab across the top of the blog).

This is a sort of roadmap of treatments to try if you or someone you care for has ME/CFS or Long-COVID. It runs through a lot of treatments options, providing an overview of what's dysfunctional in our bodies and how to treat that dysfunction, with links to blog posts or articles that explain the treatment details. All of this information is based on scientific research and the practices of the top ME/CFS doctors treating patients, as well as our own experiences.

This is a great place to start if you have never tried any treatments or to look for additional things you can try to improve your condition. Use it as a sort of checklist. Some treatments require the help of a primary care doctor or GP, some you can try on your own (though it's always best to consult a doctor), and only a few require help from a specialist. Most are inexpensive and readily available.

We have learned some new things in the past few years--about treating GI problems and endocrine issues--that I would like to add to this summary when I have time, but it's still a fairly complete overview of the most effective treatments readily available today.

I'd love to hear your feedback!

Which of these treatments has helped you the most?

Are there treatments that helped you that aren't included here?

Tuesday, April 04, 2023

TV Tuesday: Shrinking

My husband does not usually like comedy shows. Our sons and I accepted this sad fact years ago, so the three of us laugh together over That '70's Show or Bob's Burgers. Every once in a while, though, a TV comedy comes along that is so wonderful, so warm and funny, that he enjoys it. Older shows that slipped through the cracks into his funny bone include Modern Family and Life in Pieces (both excellent and highly recommended). After seeing previews and hearing its stars on television interviews, I talked him into trying Shrinking, and it was such a hit with both of us that we watched the first season much too quickly!

Jimmy, played by Jason Segel (of How I Met Your Mother fame), is a therapist who is still deeply mired in his own grief, a year after his wife's death. His boss is Paul, a grumpy older therapist played by the great Harrison Ford. Rounding out the team in their office is Gaby, played by Jessica Williams, who was best friends with Jimmy's wife. Jimmy has a teen daughter named Alice (played by Lukita Maxwell) who really needs her dad right now, but the two seemed each locked in their own grief, living separate lives in the same house. After session upon session of hearing his patients whine and complain, Jimmy finally loses his cool in one session, breaks all the rules of therapy, and urges the woman in front of him to leave her abusive boyfriend. And she says, "OK." Being honest like that is freeing for Jimmy, and it seems to help his patients, so he moves forward and gets way too involved in his patients' lives, crossing the boundaries of the professional relationship, and urging them to take positive action. Despite Paul's admonitions, this outlaw approach seems to work, especially with Sean, played by Luke Tennie, a veteran suffering from PTSD and prone to fits of violence. Adding to this all-star cast is Christa Miller (known for Cougartown) who plays Jimmy and Alice's next-door neighbor, Liz, who crosses boundaries herself and gets more and more involved with their lives.

If that summary, about a therapist whose wife died, sounds depressing, the show is not. It is hilariously, laugh-out-loud funny. It's also heartwarming and uplifting, as Jimmy and Alice gradually heal and begin to move forward again. The show was created by Segel and Brett Goldstein, who plays Roy Kent in the equally funny and warm Ted Lasso, and Bill Lawrence, a producer from Scrubs and Ted Lasso. Then there's that cast! Every one of them is outstanding and fully inhabits their flawed character. Did you know Harrison Ford is really funny? His dry delivery often had us laughing so hard, we had to back up because we missed a line. The writing in this show is phenomenal, and with such top actors to deliver those perfect lines, it's a match made in heaven. Just like when we watch Ted Lasso, every episode left us smiling. We flew through the first season much too quickly and are missing it now, but it's been approved for season two. We can't wait!

Shrinking is an Apple original program, so it's only available on Apple TV.