Soothing Scenes of Nature & Another Relapse

We got away for a week's vacation at the start of June, camping in two beautiful state parks in the Laurel Highlands region of southwest Pennsylvania. It's a mountainous area filled with waterfalls, roaring rivers, and peaceful lakes that I've wanted to visit for decades. We were also able to visit Fallingwater, the famous house that Frank Lloyd Wright designed that sits on top of a waterfall!

 

 

This 15-minute video brings you along with us to see all the sights. You can watch it on my YouTube channel or I will include it below. Turn up the sound so you can heard all the birdsong and waterfalls!

Although we enjoyed our trip, I relapsed again, out of the blue. It started a few days before our trip, with some mild symptoms, but I had a few very severe days while we were camping. My bed is very comfortable in our trailer (home away from home), and I have a lounge chair that lays flat outside, so I spent a lot of time lying in that and reading or taking naps inside. The weather was perfect for that part of the trip, and it was relaxing to look up at the treetops and listen to the birdsong, even with a sore throat and flu-like aches. We made the best of it. My husband was wonderful, as always. When I woke up badly crashed on Wednesday, he just smiled and said, "I guess it's a Plan B day, then!" (a quote from my book!).

My outdoor resting spot

I had a lot of reading time!

Can't beat the view!

We were fortunate in that many of the major features in our first stop, Ohiopyle State Park, were very accessible, often just 10-20 steps from the car, so on my better (still not great) days, we toured with the car and got out to see the sights here and there--very laid-back. 

And as mysteriously as this crash began, it ended! I woke up Saturday morning (our last day before driving home), and I suddenly felt like myself again! I was grateful, and we were able to enjoy a little easy kayaking that day, but it's so frustrating to me to not know why. 

Perhaps the short-lived nature of the relapse (about one week) was due to one of the new treatments I've been trying: 

• Microdosing tirzepatide (which helped in the fall and winter & I restarted during my April/May relapse) 
• Sirolimus/rapamune (also known as rapamycin) - I'm not up to the full dose yet, but I had been taking it for 3 weeks when this crash hit.

Certainly, neither of those prevented the crash from happening--during a time of year when I usually feel quite good--but perhaps one or both helped me to get over it quickly.

Once I get up to the full dose of rapamune, I'll write a detailed post to tell you all about it. In my last post, I explained the results of some research into it and why I decided to try it, including links to articles and videos.

 

Are you able to enjoy a relaxed vacation once in a while?

 

Have you tried any treatments that have helped to prevent crashes? 

Please share in the comments below.

You can also connect with me on Facebook, Instagram, and Twitter.

Gorgeous Fall Foliage & Nature Video

As I mentioned in my last post, I am trying a new experimental treatment for ME/CFS, long-COVID, and autoimmune diseases. I'm working on editing a month-long vlog about how it affects me. The short answer is that it is helping!! Hurray! I'm doing much better than I normally am in November, when I'm usually in the midst of a months-long seasonal relapse and living life horizontally. I've been busy, active, and productive with very good energy and only mild immune symptoms (flu-like aches). I even managed TWO social events with friends last week! I hope to have that video finished and posted on my YouTube channel before next week.

In the meantime, I wanted to share another video, from our last camping trip of the season. In my book, there is a chapter about The Restorative Power of Nature (you can read an earlier version of that chapter here on the blog). The science is really amazing, showing that spending time in nature helps to improve both mental and physical health (including immune function!). Those studies also show that when you can't get outside, even just looking at pictures of nature has measurable health benefits.

So, though I couldn't bring you all along on our trip, I can share this 15-minute video that features vibrant fall foliage, peaceful sunsets over the water, birds, and other beautiful, tranquil nature scenes. You can watch it on YouTube or I'll include it below:

 Enjoy watching, and I'll be back soon with more details on how the new treatment is helping me.

How do you enjoy nature? 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

Enjoying a Road Trip with Chronic Illness: Travel Tips

After our month-long road trip to Texas and back with our camper (videos at the link), I put together a short video about how I manage--and even enjoy!--traveling with chronic illness. The focus of this video is on road trips, by car or RV, though I previously wrote a blog post with Tips for Air Travel.

In this new video, I cover routines, rest, medications & supplements, and more. 

I spend lots of time here - especially restful when surrounded by nature!

My nap spot in the backseat of the truck.

You can watch the brief video on YouTube or I will include it below:

One viewer commented that heated seats in the car help with her back pain, which reminded me of a couple of tips I forgot to include:

• I brought our microwavable heating pad along, which I needed for my low back after long hours in the car. Our camper has a microwave, but many hotel rooms or rentals do, too. This kind of pad can also be frozen to use as an ice pack. I love this one, which is well-made, with sealed edges, so it holds up for a long time.
• I have an awesome back cushion that I use in the car. I initially bought it mainly to move me forward a bit when I'm the one driving our truck (I'm only 5'1"), but it's so comfy that it also helps when I'm in the passenger seat, and I also use it in my recliner at home when I'm sitting up to work on my laptop. I got one for my step-mom, too, who lives with chronic pain, and she loves it!

I want to hear YOUR tips!

 

Are you able to travel? If so, what helps?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

News From Our House: Back from a Month-Long Trip

I haven't posted here in almost two months, so I thought I'd start with a catch-up and update on how we're doing.

My Health

When I last posted here at the end of February, I'd been battling a cold, followed by a sinus infection, and was worried about recovering in time for our planned month-long trip in early March. Fortunately, I did recover in time, so we left on March 10, as planned.

My health remained stable and quite good throughout the long trip, thank goodness! My stamina wasn't great after a month on the couch (and a few weeks before that, several months on the couch), but I was able to enjoy the trip.

We've been back home for a couple of weeks now--and went away again this past weekend for Easter--and my health has remained steady and relatively well. In fact, I met up with a close friend today that I hadn't seen in several months, and we walked (slowly) for about an hour!

The only reason I can manage a trip like that, not to mention daily life and walks, is because of the wide variety of treatments that have helped me over the years to correct sleep dysfunction, treat orthostatic intolerance, improve immune function, treat yeast overgrowth, and most recently, treat hypothyroidism (as well as many other treatments for other aspects of ME/CFS). I have an overview of all of the treatments that have been effective for my son and I on the Effective Treatments for ME/CFS page here. 

 

My Son's Health

I think it's been awhile since I reported on my son's health. He deserves his privacy, but I just wanted to let you know how well he's doing these days. Like me, he has ME/CFS and Lyme disease, though he also has another tick infection, bartonella (and he used to have babesia, too). He's 30 now and has been living on his own with his girlfriend since 2020. He's been working full-time for a year now, which feels like an absolute miracle to us! In fact, recently, he's been working six days a week, and his job requires both physical and mental exertion. I was concerned about this, but when I asked how he was doing during the holiday season, he said it's the best he's ever felt! (He got sick at age 10, so this is all he remembers.) There's no miracle cure; he definitely still has ME/CFS and the tick infections, but he's doing well on all those same treatments that have helped me. In fact, these days, he's doing better than I am--I certainly don't have his stamina!

 

Our Trip

We were away for a full month, traveling with our camper through 12 states, from our home in Delaware to Texas and back. This trip was all about visiting friends and family, and we had 19 different visits in all! It was fabulous to reunite with old friends and family members we hadn't seen in many years. Plus, we visited some old favorite places, like New Orleans where we lived in the 80's, and explored some new-to-us places, too. And we stayed in some stunningly beautiful places, with several campsites right on the water--so peaceful! All in all, it was a really amazing trip.

You can see and hear more about our trip on my Texas Road Trip video playlist on YouTube (which includes 4 weekly vlogs plus some 1-minute video shorts) or I'll include the first video, from Week 1, Delaware to New Orleans, below:

The videos include lots of peaceful nature scenes (we were camping, after all), plus photos and videos of all the places we went and some tips on traveling with chronic illness.

How did I do all that with ME/CFS? Well, those treatments I linked to above are the biggest reason why I can travel (and do other things). But sticking to my routine, including diet, and getting a lot of rest is very important, too. You might think, looking at the photos and videos (as did many of my friends and family!), that I'm not very limited, but every day included 10 hours of sleep, an afternoon nap, and plenty of downtime. In fact, traveling with our camper helps tremendously! It's our little home-away-from-home, and it helps so much to have a comfortable, familiar sanctuary where I can rest and recover. There are some video clips within those trip vlogs about traveling with chronic illness, but I hope to pull together a separate video on that topic in the next week.

As for protecting myself against infections while meeting up with SO many people, I brought two big boxes of masks with me and wore them anytime I was in public or with other people. We also tried to spend as much time as possible outdoors. When friends or family wanted to meet at a restaurant, I asked them to choose one with outdoor dining. 

So that's me ... 

I want to catch up! How have you been?

 

Are you able to travel? If so, what helps?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

A Look Back at Travel and Outdoors in 2024

Last week, I put together a highlight reel of all of our outdoor trips from last year, a Travel Year in Review. We travel with our little camper--our home away from home--so we go at our own pace and usually have very relaxing trips. It's so rejuvenating to get outside and spend so much time surrounded by nature; it's very peaceful and provides a lovely break from the usual busy, online life I lead. My illness did interrupt our travels a couple of times last year, which I mention in the video, but we were fortunate to be able to travel to some lovely places and surround ourselves with natural beauty.

We took six camping trips in 2024 to various state parks in Virginia, Pennsylvania, New York, and Delaware--mostly close to home or within an easy day's drive. We also visited some local attractions, including bookstores, a natural history museum, a historic small town, and a historic site (which we happened to visit on an important anniversary for the site). The video provides an overview of all of that, with lots of footage of peaceful nature scenes: waterfalls, forests, lakes, running streams, and gorgeous fall foliage. I hope you enjoy vicariously coming along with us.

You can watch the video on YouTube or below:

In other news, my three-month-long relapse finally ended a couple of weeks ago! I have slowly been coming back to life, taking short walks, getting out of the house, and even seeing friends (carefully, of course).

However, being in such bad shape for so long put me way behind on ... well, everything! I'm working to catch up, so I hope to finally take a look back at my health in 2024, including what helped (and what didn't), so look for my annual health review soon.

Were you able to travel or spend time outdoors in 2024?

What are your favorite places to visit or outdoor spaces to relax?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

In other news, my three-month-long relapse finally ended a couple of weeks ago! I have slowly been coming back to life, taking short walks, getting out of the house, and even seeing friends (carefully, of course).

However, being in such bad shape for so long put me way behind on ... well, everything! I'm working to catch up, so I hope to finally take a look back at my health in 2024, including what helped (and what didn't), so look for my annual health review soon.

Were you able to travel or spend time outdoors in 2024?

What are your favorite places to visit or outdoor spaces to relax?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Chronic Illness Vlog: A Week in My Life During a Crash (Plus, Nature!)

I've been stuck in a mysterious relapse of my ME/CFS for the past month. I've had flu-like aches every day. I thought that--like last fall--it was due to yeast overgrowth flaring up again, but stronger antifungals and a stricter diet aren't having the effect I'd hoped. I'm a little better, but still achy. Since that is an immune symptom that is a warning sign for me, I have been lying low, not going out much, no walks, and spending a lot of time on the couch ... and in my reclining chair on my deck.

I made a vlog last week that gives you a peek into my life with chronic illness during a down week (though, admittedly, not as bad as in the past for most days last week). I talk about what treatments have worked in the past and what I am trying now. And I included some nature footage, so you can enjoy the sights and sounds of nature, too. You can watch it on YouTube or here:

And if you enjoy nature--or want to improve your health!--I will also include my recent outdoor vlog from our last camping trip of the season, at Trap Pond State Park in Delaware, with beautiful fall foliage. Enjoy the peaceful, soothing videos and photos on YouTube or here:

Did you know that scientific research shows that just looking at pictures or videos of nature has measurable positive effects on both mental and physical health? It even improves immune function! So, enjoy this brief respite in nature. Then, open your window or go outside, if you can manage it, to experience nature in your own backyard (or porch or patio or balcony). I'm in my reclining chair on the deck as I type this. It always calms me and makes me feel better.

How was YOUR week?

And how do you enjoy nature?

Please let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

The Joys of Fall

I thought I'd combine a quick personal update with sharing my latest camping vlog. This past month has been so busy here! I love fall with the cooler weather (ME/CFS has made me so heat intolerant) and brilliant foliage, but it seems to be flying by. We did manage a nice, relaxing 9-day camping trip at the end of September, with stops in two beautiful state parks in New York (check out my vlog from the trip) to make up for having to cancel our July/August vacation due to my slow recovery from COVID. 

Kayaking on beautiful Gilbert Lake in NY

My husband and I celebrated our 35th anniversary at the end of September with a rare dinner out, though since getting COVID again, I am even more nervous about restaurants. For my husband's 70th birthday at the start of October, I planned a big surprise: a golf weekend in nearby Maryland for him, our son, his local golfing friend, and his friend from high school who flew up from Texas for the occasion! We managed to surprise my husband, and they had a great time golfing within view of the Chesapeake Bay and staying at the Airbnb I rented. The following week, his Texas friend's wife flew up to join him, and they spent the week here. She and I had never met before, but we had so much in common! What an unexpected joy to make a new friend. I was worried the week would be too much for me, but they wanted to see the East Coast and traveled to the beach, the mountains, Philadelphia, and New York City. And when they were here, we very much enjoyed their company.

Out on the deck with our Texas friends!

 

They left on Saturday afternoon and by noon on Sunday, we had our camper packed up and ready to go! I didn't want October (my favorite month) to go by without any camping, so we squeezed in a mini 2-day getaway to Killens Pond State Park, just over an hour away from us here in Delaware. It was a short trip but SO relaxing! We spent a lot of time in our lounge chairs, reading, enjoying the view, and looking at the campfire. Just the break and time in nature we needed. You can watch my short vlog from the trip on YouTube or below:

Back home, we met up with our son and his girlfriend last weekend to visit a local farm market for pumpkins and hot, fresh donuts, our annual tradition. (After zero sugar or flour for the past 10 months due to chronic yeast overgrowth, I even treated myself to a half donut!) Afterward, we went to visit their new apartment for the first time; our son moved out of our house in September.

Our fall tradition!

This week, for reasons I don't understand, I was pretty badly crashed on Monday and Tuesday, for the first time since I got past the worst of COVID. I felt better today--not quite up to where I have been but able to get out for a doctor's appointment, a tiny 10-minute walk among stunning fall foliage, and my neighborhood book group.

Fall colors

 

And now, I am out on our back deck, enjoying the sunshine and warm weather. I've spent a lot of time in this reclining chair out here this week!

My happy place on our back deck in the reclining chair!

Overall, aside from this brief crash this week, I am almost back to my pre-COVID baseline. The first six months of this year were the best I've had in several years, so my energy and stamina aren't completely back to that yet but are getting close.

How are you doing?

Do you enjoy fall? If not, what's YOUR favorite season?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Fall Camping Vacation Vlog - Nature Videos

Whew, it's been a whirlwind couple of weeks, filled with catch-up medical appointments and family obligations, but before that, my husband and I enjoyed a wonderfully relaxing 9 days of camping in beautiful New York State. We visited two different state parks that we'd never been to before, visited our nephew at college, and found two great bookstores! In this video, you can come along with us on the trip, with lots of videos of soothing, peaceful outdoors (what I love so much about camping), so be sure to turn the volume up to listen to the birds, the breezes, and other sounds of nature.

You can watch the trip vlog on YouTube or here:

I hope you enjoy that little respite as much as I did! I'm ready to go again--could really use the relaxed downtime.

How do YOU enjoy nature?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Relaxing & Peaceful Nature Videos

Oh, my gosh--I can't believe I haven't written a new post here in three weeks! I did send a newsletter out, so that's a win. Sorry about the gap in posts. Life's been very hectic, and my energy and stamina are still really low after getting COVID in early July. I am struggling to keep up with everything (and not doing very well at that). I have some new treatments to try after a phone appointment with my doctor this week to review recent labs, so I'll fill you in a couple of weeks on what they are and if they're helping.

In the past month, we traveled to see our son for his 30th birthday (highlight: he's working full-time and says he feels the best he's ever felt in his 20 years with ME/CFS!), attended a graduation party, took a 4-day camping trip, and just last weekend, attended a wedding about five hours from here. The wedding weekend was wonderful, filled with our closest friends, but exhausting, as you can imagine! This week was two doctor's appointments, a book group meeting, and a Zoom meeting with our local support group. We are currently packing for another, longer camping trip, and I can barely keep my eyes open!

So, I thought I would just quickly share the vlog I made from that last camping trip--it was a very relaxing few days, and the vlog includes photos and videos of nature--lakes, waterfalls, birds, and more. It's all very serene and peaceful. Remember, as I explained in my book (and here on the blog), even just looking at pictures of nature is beneficial to your physical and mental health, so enjoy!

You can watch the video on YouTube or below:

I'm really wiped out today, but once we leave on this trip, I'm looking forward to some complete downtime, with nothing to do but lie in my lounge chair and read or stare into a campfire and be surrounded by nature.

I hope you enjoy the vicarious camping trip in the video!

How do YOU enjoy nature?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Spring Camping Vacation Vlog

The blog has been quiet because we were on vacation last week! I not only had no internet; we didn't even have cell service much of the time! We were truly off-the-grid, and it was very relaxing. I put together a travel vlog, loaded with videos and photos of camping, hiking, kayaking, reading, and lots of relaxing! Plus lots of great footage of peaceful nature scenes, to help YOU enjoy the restorative effects of nature, too.

We drove with our pop-up camper down to Virginia (about a day's drive south, so perfect for April) and visited two beautiful state parks there: Holliday lake State Park and Fairy Stone State Park. On our way back, we spent the weekend on Smith Mountain Lake with my college suitemate and her husband (also a college friend) and really enjoyed both the gorgeous setting and the company. Nothing like old friends!

You can watch the vlog on YouTube or I''l insert it below - be sure to turn up your volume to enjoy the sounds of birdsong, bubbling streams, and trees swaying in the wind:

As you can see, I am still feeling really great! As long as I get my 9 hours of sleep a night and my afternoon nap, I can be quite active during the day (9000 steps one day on this trip - a new personal record!). And I have still not crashed even once since the beginning of the year. For details on why,  check out my 2023 Year in Review post (scroll down to "What Helped").

Vacationing this way--in our little camper, our home away from home, on our own schedule--allows me to relax and enjoy a getaway.

Are you able to travel at all or enjoy a vacation?

What helps you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Virginia Vacation Vlog: Fabulous Fall Foliage!

I haven't posted on the blog in a while because we were on vacation last week (and I've been catching up this week - I still have 200 more unread e-mails to go!). We drove down to Virginia with our camper and spent a very relaxing week at two wonderful state parks, surrounded by stunning natural beauty!

I often mention here on the blog how healthy it is to spend time outdoors, and scientific research bears that out. In my book, I included a chapter, The Restorative Power of Nature, that details the scientific evidence that time spent in nature has measurable positive effects on both mental and physical health. That chapter also includes tips on how to bring nature's benefits into your own life, no matter how restricted you are; studies show that even looking at pictures of nature provide benefits. You can read an earlier version of that chapter/article here on the blog. 

So, with that in mind, I am sharing with you a Vacation Vlog I put together, with loads of videos and photos from our camping trip last week. My recommendation is to watch it on a larger screen, like a tablet or laptop, expand the view to Full Screen, and turn up the volume so you can hear the sounds of nature, too. That way, you, too, can benefit from the wonderful natural beauty we were immersed in last week, including brilliantly colorful fall foliage, peaceful lakes reflecting those vibrant colors, and even some wildlife. 

You can watch the video on YouTube or here below:

 

You will see that I was mildly active on this trip, taking short, easy hikes and kayaking with my husband. It is much easier for me to do those things when we're on vacation because there is no stress, no responsibilities, and no obligations! We typically do one mildly active thing after breakfast (if I am up to it), and the rest of the day is very restful and quiet. It is also only possible for me to do these things because I have treated Orthostatic Intolerance (OI), which is a huge contributor to the exertion intolerance of ME/CFS and long-COVID. I also mention in the video that I use a heart rate monitor to stay within my limits.

I hope you enjoyed that mini vacation!

How do YOU enjoy nature within your limitations?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter/X.

Vacation Vlog: Nature, Relaxation, Good Food ... And Feeling Good!

Last week, we went to the Catskills region of New York State for relaxed 5-day vacation. It's about a 4-hour drive from our home, and we brought our pop-up camper (home away from home). It's always so rejuvenating to spend time surrounded by the beauty of nature, but we also enjoyed some time in nearby small towns.

Here's a travel vlog that I put together, with lots of video clips and photos, so you can come along on our trip with us. You can watch it on YouTube or I'll include it here:

Scientific studies show that even looking at pictures of nature can improve your physical and mental health, so I hope you enjoy that!

Toward the end of the video, I included a short addendum after we got back home about WHY I felt well enough to manage this vacation. The day before we left, I got my latest thyroid lab results back, showing that everything was still low, in spite of two different thyroid meds and a dose increase a few months ago. My wonderful primary care physician e-mailed me on the weekend and agreed I could try going up more on the dose of one of my meds. It worked! Within 48 hours, I was feeling better, with more energy and stamina, and I was able to do more without crashing. Just in time!

I hope you enjoy coming along with us on our relaxing trip.

Are you able to travel at all, even for a weekend away?

What is your favorite kind of vacation?

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.

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.

Outdoor Nature Vlog & Good News!

The good news is that I finally seem to have come out of this months-long relapse that has trapped me on the couch since August! I made one medication change three weeks ago and two more last week, and I felt really good most of this week. I am pretty much back to my normal baseline, though my stamina is low after not doing anything for months. But I took my first walk in over 3 months this week, with no crash afterward! It's been a complicated situation, so I will write a longer blog post next week, explaining what helped me.

Best of all, we finally got our camper back from the repair shop (it had been hit in a traffic accident), just in time to take advantage of the last warm weather of the year. We went camping for two days to Trap Pond State Park in southern Delaware, and I was even able to manage kayaking. Trap Pond is the site of the northernmost-occurring natural grove of cypress trees, which are beautiful. The weather was great, and the natural beauty was stunning. We could see the lake/pond right from our camper.

So, this week, my usual vlog was a whole lot more fun! It's mostly video clips and photos of our camping trip and the gorgeous natural world around us. There's a little bit at the end about the books I'm reading, too. Studies show that just looking at pictures of nature improves both physical and mental health, so I hope you enjoy coming along on our trip! You can watch the video on YouTube or here below:

Chronic Illness Vlog & Lake Vacation

My ME/CFS is still in a relapse--10 weeks now. It's getting old. I am definitely better off than I was at my worst but still nowhere near my normal level of functioning. I still have flu-like aches every day, so I am still mostly couchbound, though I have been able to leave the house for short errands. I still can't tolerate even a short walk (with treatments for OI and immune dysfunction, I was able to walk for up to an hour without crashing!) or even sitting up for long. I'm typing this from a reclining lounge chair out on the deck to enjoy this nice fall day!

But I got a huge treat last week--a long weekend at a beautiful lake house in the Poconos in eastern Pennsylvania with my husband, our two adult sons, and their girlfriends. I've been planning this since last Christmas and was worried how I would handle it, but I managed OK. Even the couch in this house had great views of the lake! It was just what I'd hoped for--just some relaxed vacation time with our sons. The last family vacation we had together was in 2019. 

So, my latest vlog includes video clips from home last week, as I rested and tried to get ready for the trip, and then some videos and photos of "our" beautiful lake house last weekend. Studies show that just looking at pictures of nature has physical and mental health benefits, so enjoy!

You can watch the video on YouTube or I will imbed it here. 

Either way, leave a comment and tell me how YOUR life has been lately!

News From Our House: Chronic Illness Update

I realized this week that it's been two months since I recorded a video related to chronic illness (I've done lots of books videos in between because they are usually short and take less energy!), so I decided to record a little update of my past few months. 

This is just a casual conversation about the ups and downs of my illness recently, but it also includes some information about how I came out of my post-COVID relapse and how I track my symptoms/illness severity:

Oh, and I included some photos and video clips of fun stuff, too, including some very peaceful nature videos!

You can see all of my chronic illness videos on my YouTube channel.

In this new video, I refer back to a recent blog post, ME/CFS, Lyme & COVID: Relapses and Recoveries for details of what helped me recover from my various relapses.

I've already had two crash days this week (unusual for me) and am trying to take it easy today, so that's it for now. Please let me know if you have any questions.

How is YOUR chronic illness life lately?

Weekly Inspiration: Let's Get to Know Each Other!

A year ago, I started my YouTube channel, and since then, I have posted 86 videos, with 16 of them being directly about living with chronic illness (the rest are about books and reading). But, it occurred to me that I only talk about chronic illness and books (and same for other YouTubers in both the chronic illness and book worlds) and that it would be fun to get to know each better!

So, I started my own original tag, All About Me (a YouTube tag video provides questions or another framework for people to share their own answers). The idea is to tell my viewers/readers more about myself, beyond the details of my chronic illness or my reading habits. And I am hoping that others will also do the same, so I can learn more about the YouTubers, bloggers, and other patients whose videos, blogs, and comments I enjoy.

Especially in the chronic illness community, the connections I have made online have greatly enriched my life and provided comfort and support when it feels like no one else "gets it."

At its heart, it comes down to this:

We are more than our illnesses.

We are all complex, interesting people! Here's my All About Me video - click the link to watch it on YouTube or you can watch it below.

And, now it's YOUR turn! I'd love to learn more about you, too! Make your own All About Me video or blog post (the questions are listed in the notes below the video on YouTube) or just share something about yourself in the comments below or on my blog's Facebook page or in the wonderful chronic illness Twitter community (I will post this to my own Twitter feed.)

Let's get to know each other better!

Weekly Inspiration: Give Me a Break!

With apologies to the familiar McDonald's jingle: "You deserve a break today!"

My Solo Getaway

I just came back from a mini solo getaway to the beach (about 90 minutes from here), which I sorely needed. In addition to the pandemic, which has affected everyone everywhere, I'm in month #13 of a bad relapse (improving now but slowly) so have been far more limited than usual. I've also been totally overwhelmed by the stress of some major issues with extended family, which have been affecting my sleep just when I need it the most. And, there's all the usual stuff: juggling my blogs, freelance writing, time with my husband, household maintenance, and all the mind-boggling medical issues  (my current regimen requires taking medications and supplements at 10 different times of day!).

So much to do and remember! I need a break!

 

Then, there's the simple fact of just getting sick of the same old routine, day after day, which my relapse and the pandemic have multiplied. My husband and I had tentative plans to get our camper out for the first time this past week, but that fell through when his work schedule interfered. We are severely limited right now because we (and especially he) are taking care of his 95-year-old father, who now requires daily hands-on assistance. So, we can only go away for a day and a half, mid-week when his aide is visiting, and less than an hour from home. We are looking for an Assisted Living facility for him, but we weren't going to move him until visitors were allowed. So, yeah, there's that, too!

Anyway, all of this stress has been growing, so when our camping trip got cancelled, I decided I still needed a break. I planned a short solo getaway to the beach, with the help of a generous friend who lent their condo, which was empty last week.

Stormy skies ... but at least I'm at the beach!

 

This was just what I needed (though over far too soon!). I was completely alone for about two days, with no one to be responsible for but myself. I ate when and what I wanted (very little cooking; mostly takeout!), kept my own schedule, and enjoyed the silence. Though the weather forecast looked pretty bad when I left, I ended up having about 24 hours of sunshine and clear skies, so I drove to the beach (just a few miles away from the condo) three times: first for a walk with a friend, then (because the walk wore me out) just to sit with my book and enjoy the sounds of waves and seagulls and the gorgeous views. In the evening, I ate my takeout in front of the TV and watched movies my husband wouldn't have been interested in. Both the time alone and the change of scenery really helped me. In fact, I realized as I returned home that I was beginning to obsess over the family issue again and that I hadn't thought of it while I was away. My mini getaway provided both a physical and mental break for me.

Ahhh, that's better! Relaxing with a book in the sunshine.

 

It's not always possible to physically get away like I did this week, either due to responsibilities or the limitations of your illness (I never could have managed this during the worst of my relapse last year). But, you can still find ways to give yourself a break, even right at home.

A ride in my convertible to the nature center a few miles away provides a respite!

A Change of Scenery

Even if you are housebound, you can give yourself a break from routine with a simple change of scenery: 

• Lie on the couch in the seldom-used living room instead of your usual spot in the family room. 
• Create a comfy nest for yourself somewhere. Back when three of us were all sick at the same time, my youngest son liked to do this. Our couches were all taken up, so he'd pile a bunch of pillows and blankets on the floor (maybe even with a spare mattress) and get cozy in his nest. 
• Lie outside (see below).
• Move to a spot where you can look out of the window.
• If you are up to it, drive or ride along as a passenger while a friend or family member drives. You don't need a specific destination--sometimes, it's just nice to get out.

 

Lying outside on our deck lifts my spirits!

  

Get Outside

Spending time in nature is a wonderful way to rejuvenate and "get away," even if you are still home. My article,The Restorative Power of Nature, written for ProHealth and updated as a chapter in my book, details the health benefits of spending time outdoors with lots of practical ideas for those with chronic illnesses. Scientific studies show that nature has amazing benefits for both physical and mental health. So, try some of these ideas for a mini outdoor getaway:

• Sit or lie outside in your yard, garden, deck, or even on a balcony. I like my anti-gravity. bungee chair and often lie in it out on our deck (or in the screened porch if the bugs are out). Just being away from the TV and other indoor noise helps.
• Tune in to the natural world. Once outside, look, listen, and smell! Look up at the sky and watch the clouds. Listen to the birdsong (which was there all along, even if you don't normally notice it) and the wind in the trees. Smell the spring blooms or the air after a rainstorm. Look around to notice the signs of the season and what has changed since the last time you were out there.
• If you can manage it, ask a friend or family member to take you for a drive on backroads, into the country or maybe to a local park. Put the windows down, smell the air, and enjoy the change of scenery.
• If you are able to walk without crashing (for me, treating OI was the key to improving my exercise tolerance), try walking in a park or other natural area instead of your usual neighborhood walk. Though, even in your own familiar neighborhood, you can focus more on your surroundings and observe what is going on in the natural world. I love to see what new flowers and trees are starting to bloom (or turning color in the fall).
•  If you are severely limited and bedridden, ask someone to open the window on a nice day so you can listen to, observe, and even smell nature. Studies show that even looking at pictures of nature has beneficial effects! Try a nature documentary or a slideshow of photos of National Parks.

 

Takeout from our favorite Louisiana restaurant is a nice treat!

 

Take a Break from Routine

This past year, during this bad relapse, I have learned that even a simple break from my usual routine can help to lift my spirits. Certain things, of course, can't be changed: my bedtime, my daily nap, and all those meds and supplements, timed just right! But, there are other things that my husband and I enjoy as a change of pace:

• Order takeout from a favorite place, as a special treat.
• If you are able to indulge a bit outside of your usual dietary restrictions, then do that once in a while! I normally avoid grains, so a grilled Reuben sandwich or a po'boy from our favorite New Orleans restaurant is a huge treat for me. Similarly, I normally avoid dairy but will occasionally indulge in a small sugar-free sundae. It might not seem like much to healthy people, but these rare splurges bring me joy and a break from my routine.
• If you normally eat at the kitchen table, indulge in dinner in front of the TV with a favorite show. Or, if you always eat in front of the TV, try eating in the dining room on the "good" dishes with candlelight.
• Take a "day off." Even when I am not feeling well, I am usually trying to be productive, even attempting to clear my e-mail inbox while lying on the couch, for example. There are two ways that I take a day off: if I am really feeling awful, it is a huge relief to give in, admit I won't get anything done that day, go back to bed, and lose myself in a good book or TV show. Alternatively, like with this week, it can give me a big boost to intentionally take a "day off" when I am not badly crashed. I did that on Tuesday, the day I drove to the beach. I did not even attempt to do anything productive, just enjoyed the beach, read, and watched a movie (and left my laptop closed).
• If you always watch the same TV shows, try something new that everyone's been talking about. Or choose a movie that's different than what you usually watch. Or read or listen to a book in a different genre than you usually read. Anything different can provide a nice change of pace.
• If you're feeling isolated, surprise an old friend with a phone call, video call, or even text message. It can provide a huge emotional boost to reconnect and interact with a loved one, even virtually.
  

I bet that YOU need a break today! Hopefully, those ideas can get you started. 

What do you do when you get sick of the same old routine and need a break? Share your own ideas in the comments below.

News From Our House - Oct. 1, 2020 - Taking Time Off

Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.

Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.

Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach

 

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!

 

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!

 

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach

 

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).

What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.

Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.

We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.

 

 

 

How are YOU doing this week?

And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.