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.

My Relapse Is Finally Ending!

I got out on a local walking trail today!

Sorry I've been so absent from the blog; I was pretty wiped out after the holidays. But I have good news! After three months of being badly relapsed with my chronic illness (ME/CFS) and stuck on the couch, I am starting to come back to life. The last two weeks, I had some better days but was very up and down: good day, bad day, good day, bad day, etc. This week, I have finally turned the corner. Today is my fourth good day in a row, so I don't think this is a fluke. I seem to be finally coming back to life.

I left the house three times this week, after months of being stuck on the couch. One of those was a trip to the orthodontist to get Invisiline (at age 59!), but even that was a big thrill. I ran a few small errands in our little town, and it felt so good just to be out in the world again, in my little red car, singing along to the radio, and seeing people besides my husband! And today, I got a long overdue haircut and ran into an old friend I hadn't seen in over 10 years!

For the last two days, after several days with no flu-like aches, I cautiously began walking again: still  tiny walks of about 15 minutes, but I left our little cul-de-sac! Such a thrill 😀 And today, the temperature went above freezing for the first time in over a week, so my timing was great--that sunshine felt so good.

This is the song that's been going through my head today (it's a weird video & some weird lyrics, so I'm not sure what the artist intended, but the chorus has been going through my head and making me smile):

What caused the relapse and why did it end? I have no idea! I wish I had some answers, but this disease defies logic (which makes me crazy--I like logic). The flu-like aches (a sign of immune activation) began on a random day in mid-October. My best guess is that I was possibly exposed to someone's random cold, and it triggered my immune system into overdrive for three months. I wear a mask in public, but sometimes my son or close friends come to visit (I realize I should be wearing a mask then, too) or (rarely) we eat in a restaurant where I have to remove my mask. 

Or perhaps it was simply an increase in allergies triggering my immune system to rev up. My main allergies are to dust and mold, and the timing sort of coincides with spending more time indoors (and molds increase in fall with leaves on the ground), though we had a very warm, dry fall this year. Who knows? I wish I knew what the trigger was so I could prevent it next year because I am really sick of being at my worst during the holiday season.

For a while, I thought it was the same thing that caused a bad relapse at the end of last year: yeast overgrowth, which is chronic for me and many people with ME/CFS or long-COVID, due to the specific kind of immune dysfunction we have. But I got extra-strict with my diet (still doing a keto diet) and switched to a stronger prescription antifungal than I normally take for a month. My dentist even checked me out and said there was absolutely no sign of thrush in my mouth, so I don't think that was the cause this time.

Perhaps my treatments played some role in my improvement. I took two 5-day rounds of steroids in December, in a desperate attempt to calm down my immune system so I would feel better by Christmas. I actually felt awful Christmas Eve and Christmas Day, but I was also doing way too much with lots of people here. But maybe the steroids did eventually help calm down my immune system. I do think the aches were less severe afterwards.

I also played around with my immune treatments, wondering if instead of their typical moderating effect, they might be further over-stimulating my immune system. I went off low-dose naltrexone for the first time in about 16 years. I tried restarting it a couple of times, then gave up and just stayed off it (for now). [Though note that it helped me tremendously for those 16 years, so it is worth trying. Details at the link.] I also stopped my daily glutathione nasal spray for a week or two, but I have restarted it, which coincided with feeling better. It's all such a guessing game because SO many factors can affect how we feel (including random things like the weather).

I'm due for another increase in my thyroid medications (for hypothyroidism) after labwork showed my numbers still well below normal in November, but other than that, I plan to stay the course and not change anything else for now. Don't want to mess with success!

We are starting to plan some big road trips with our camper for 2025, but you know how it is with this crazy disease! Last year, I got COVID in July and had to cancel five campground reservations for a two-week trip we planned. So, we will make reservations and hope for the best.

Now that I'm feeling better, I hope to do a 2024 wrap-up, both here and on YouTube, like I usually do at the start of a new year.

How are you so far in 2025?

What are your hopes and plans for the new year (relative to health or anything else)?

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.

Chronic Illness Vlog: Bump in the Road But Still Doing Well!

Life has been hectic lately, but I did manage to record a vlog last week. My chronic illness vlogs are a little peek into my life with ME/CFS, an honest view of what my life with chronic illness is like on a typical week (though it hasn't been typical lately, with all the travel!). As you'll see in the vlog, I am still crash-free in 2024 (yay!), but I had a string of days last week when I was feeling run-down and had very low energy. I figured it out (yeast again - duh), and getting stricter on my diet helped me get back on track.

You can watch the video on YouTube (the link to YouTube also includes all of my notes below the video, with links to other information you might find helpful that I referenced) or I will include it here below:

 

 As always, I've also incorporated some nature videos into the vlog for your peace and enjoyment.

Our son (the one with ME/CFS for 20 years) and his girlfriend have been here all week and are currently packing their rental truck. They leave early tomorrow morning on a month-long road trip across the US! They've been planning this for years, and we're so excited for them. We'll be guinea pig sitting while they're gone, and then they both start new jobs when they return in June--exciting times!

How was YOUR week?

 

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

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.

Chronic Illness Vlog 4-1-24: Out in the World, Home Improvements & Easter

I recorded a chronic illness vlog last week, full of videos (and some photos) that show an honest view of my life with ME/CFS and Lyme. And these days, it's a pretty good life!

I am still doing really well and have been quite active, as you can see in the video. I've been able to see friends, go shopping (!), run errands, and even begin to work on our house a little (baby steps!). Small steps toward decluttering feel so good after feeling so helpless the past few years; it feels great to be productive again. Last week, I also went to the movies with my husband and enjoyed a weekend trip to visit family for Easter. This visit was a far cry from our last trip, for Thanksgiving in November, when I was so horribly sick that I needed a second nap between dinner and dessert.

As I've mentioned here before, my recent big improvements came from treating chronic yeast overgrowth (which makes me feel awful). I thought it was already well-controlled ... but I was wrong! It took all of the treatments in my Treating Yeast Overgrowth post, plus a major change to my diet at the beginning of the year. The other factor was effectively treating thyroid dysfunction (hypothyroidism, in my case). My doctor and I worked on that for over a year, but I couldn't see the full improvement with the yeast overgrowth making everything worse. 

That's the way it is with these complex immune disorders; sometimes you can't see the benefits of one treatment until you tackle another aspect of the disease. I have not experienced a single crash from over-exertion (or for any reason) yet in 2024, which feels like a miracle. I'm feeling the best I have in several years. Keep in mind that prior to this, I also treated many other aspects of the disease (see Effective Treatments, newly updated). It's like playing whack-a-mole!

You can watch last week's vlog on Youtube or right here, below:

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: I'm Back, Baby!

After months of a very bad relapse of my ME/CFS, I had a wonderful week! I felt really good, had good energy, and was active and productive. In this video, you can see me out and about, coming back to life after months on the couch, and I explain how I figured out what was behind my bad crash (in short, still yeast overgrowth!), and the radical diet change I made that resulted in such a stunning turn-around.

You can watch the video on YouTube (there are additional notes below the video - click on "...more") or here:

You will see a very big change from my last chronic illness vlog, a few weeks ago, which was almost entirely from a horizontal position on my couch.

That's all I have time for today - a quick update. My husband and I are going out of town for a few days - just a quick trip to a town about an hour away. They have a wonderful independent bookstore that is hosting a book event for me and my book! I'll have a chance to tell my chronic illness story, read a bit of the book, meet people, and sign books. This has been scheduled for months, so I am very relieved to be feeling well enough to manage it!

 

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Highs and Lows

I posted a chronic illness vlog from last week, showing an honest view of my life with chronic illness. And, wow, last week was one of extremes! I went from crying on the couch, wracked with flu-like aches, to the euphoric victory of attending my 40th (!) high school reunion and the challenges of traveling to spend time with family on a long holiday weekend.

You can watch the video on Youtube or watch here:

Yes, it was one of those weeks that felt like a rollercoaster, one that jerked me from very high highs to extremely low lows, often with no transition in between. As you can see, I was feeling optimistic when I recorded the last segment on Monday this week, but--alas--that was short-lived. By Wednesday, I was back to crying on the couch, with horrible aches, hitting bottom once again. After my husband left to go to the store, I opened the refrigerator to get some water, and the bottom rack in the door pulled apart, spilling all the contents onto the floor. That did me in. I collapsed in a heap in front of the open fridge and sobbed my eyes out. It was just one of those "last straws," know what I mean? I eventually pulled myself together, put everything back in the fridge, and huddled down under the blankets on the couch to watch two old episodes of Grey's Anatomy (my happy place). My wonderful husband said, "you're not even attempting dinner tonight," and took care of it entirely. 

Today, I am feeling better emotionally, though still achy. I scheduled a phone appointment with my ME/CFS specialist for next week, so I'm hoping she has some ideas to calm down my activated immune system. In the meantime, I am resigned to staying horizontal as much as possible and listening to my body.

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Doing Better! ... And Sometimes Overdoing

It had been a while since I recorded a chronic illness vlog, so I put one together. These brief video clips from last week show an honest view of my life with chronic illness with its ups and downs. I've finally gotten my flare-up of yeast overgrowth/candida (chronic for many of us with ME/CFS, long-COVID, and Lyme) back under control. I've also been struggling for a year with treating hypothyroidism and am finally doing quite well! It was a mixed week, with some good, productive days and some run-down days. 

You can watch the video on YouTube (and see all the notes and links below it) or right here:

How are YOU doing?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Beyond the Cul-de-Sac

A beautiful day by the creek

My husband gets credit for the title of this blog post. When I asked him this morning if he wanted to take a walk after breakfast, he said, "Beyond the cul-de-sac?" and then, "That would be a great name for a blog post." So here, it is!

The significance of that phrase is that I've been struggling all summer--really most of the past year--with low energy and more fatigue than usual. Between trying to find the right combination of treatments for my hypothyroidism, and my battles the past few months with severe yeast overgrowth, my energy and stamina have been much lower than usual. So, my daily walks have mostly been around our cul-de-sac--yup, exciting, around a small circle! When I feel I can manage a bit more, I walk our cul-de-sac and the next one over, but any further in our neighborhood involves too many hills. Once in a while, if I'm out for a medical appointment, I stop at a local paved walking path and stroll the flat parts, about 10-15 minutes.

So, that's why my husband was excited when I proposed a walk today "beyond the cul-de-sac"! We drove to a beautiful creek-side path we love. It's very flat (my heart rate barely went above 90), and we walked slowly. The humidity dropped today, which is why I suggested a walk, and this spot is so peaceful and restorative. I love listening to the sound of the bubbling creek alongside us. 

As I explain in my book, scientific studies show that time spent in nature provides measurable improvements in both mental and physical health--it even improves immune function! Studies also prove that even looking at pictures of nature can produce some of these beneficial results. So, here's my gift to you on this beautiful Sunday. If you're not able to get out and enjoy nature where you are, I will share ours with you here (and to hear the water and see the sunlight, check out my video short):

Someone left behind some nature artwork!

Cool and comfortable in the shade

My happy place

Looking down-creek

And up-creek

A lovely morning along the water!

How do YOU enjoy nature?

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.

Quick Chronic Illness Vlog: Great News x 2! Plus Nature.

I didn't record a chronic illness vlog last week, with video clips from my entire week, but on Monday (yesterday), I decided to record a brief video to share some good news!

I think (don't jinx it!) that I am finally back to my "normal" baseline after the terrible (worst in 20 years) relapse that began last September (what caused it and what helped at the link). Here, I talk (and include some photos and video) about a hike this weekend that I managed without crashing.

Even bigger news and a huge milestone for our family ... our oldest son started his first full-time job in his professional career on Monday! He's been sick with ME/CFS and three tick infections for 18 years, since age 10, so this is an enormous step forward for him toward a normal adult life.

You can hear the good news and details for yourself in this quick vlog that also includes some photos and video clips of a beautiful day walking along a local stream - remember that just looking at nature has mental and physical health benefits!

The details of how we each improved to our current level of functioning are all here on my blog - the Treatments tab is a good place to start. I also included more links at the bottom of the video page on YouTube (click Show More below the video).

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.

Chronic Illness Vlog: Ups & Downs and Lots of Nature!

I posted a new chronic illness vlog last week but forgot to share it here. This was recorded at the end of February and first week of March.

It was a week of mild ups and downs, with no bad crash days--those are once again becoming rare, thank goodness. I spent some time with my older son, who is now 28 and has had chronic illnesses since age 10, so there are some thoughts on parenting a sick kid. And this vlog includes lots of peaceful, calming video of nature, since I was able to take several walks that week (my stamina is also improving!).

I'm recording another vlog this week that I will post next week. And this past weekend, my husband and I enjoyed a long-overdue weekend getaway to a rental cottage about an hour away located right on the water, with gorgeous views. I'll include some photos and videos of that, too.

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.

Chronic Illness Vlog 2-21-23: A Week of Small Celebrations

I haven't posted a vlog since December, so I recorded one last week. My chronic illness vlogs are honest views of my life with ME/CFS and Lyme, shown through short video clips made over the course of a week.

Last week, I was feeling pretty good, with just a few low-energy days. Mostly, though, given the time of year, it was a week filled with joy due to celebrations of smaller holidays: Superbowl (just before I recorded this), Valentine's Day, and Mardi Gras. You can check out my video, Celebrate Everything, Big and Small, for my tips on adding joy to your life by celebrating the small stuff, with minimal effort and energy!

This vlog also includes some peaceful, calming video outdoors in nature.

You can watch last week's vlog on YouTube or below:

So, how was YOUR week last week? Do you have traditions for small celebrations?

Share your thoughts in the comments below.

Chronic Illness Vlog 12-12-22: Up and Down and a Dose of Nature

While I was able to finally recover from my three-month-long relapse, thanks to starting some treatments and stopping others (more on that in a future post), I'm still not quite back to what I consider my "normal" baseline.

So, this vlog from last week provides a pretty typical view of how I'm doing right now, with some good and active days, some run-down days, a COVID scare, and a nice dose of much-needed nature to share with you.

I had a very busy day yesterday (too busy, clearly) and am feeling pretty crummy today, so the ups and downs continue. This time of year is always tough for me, with too much to do. As a book blogging friend said to me earlier this week, "I can barely keep up with everything normally, and then to add holiday preparations--impossible!" 

Right now, I am trying to decide if I can manage my neighborhood book group tonight. I haven't been able to go since May, and I did have a good, long nap this afternoon ... but I'm still not sure I have the energy. After that long relapse, though, I have been reminded of how much I need some social interactions and to see friends once in a while. I still have two hours left to rest and decide!

Tell me how YOU are doing this holiday season?

How's your health been?

Is this time of year hard for you?

Let me know in the comments below.

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 10-31-22 & Happy Halloween!

Last week's vlog shows an honest view of my life with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), Lyme disease, and Orthostatic Intolerance (OI).

I am still--slowly--working my way back from this months-long relapse, but I am definitely seeing improvements. I actually went OUT last week--three times!--and enjoyed a fun weekend. That's a big step forward.

I'm still on the couch today and still achy, but I'm much more functional than I was a few weeks ago, when I was unable to even sit up briefly.

As always, you can watch the video on YouTube or I'll imbed it below.

However you watch, please take a moment to leave a comment and let me know: 

How was YOUR week?

Chronic Illness Vlog: Treatments, A Better Week & Crashed Again!

My health continues to be very up and down--well, mostly down. It's a long, complicated story, and I want to write a full update for the blog, but I haven't had the energy for that. A change in medication caused a massive shift in hormone levels for me, and I think I am still adjusting to that and waiting for my body to stabilize.

In the meantime, I have another weekly vlog that tells another piece of the story. As I edited this video yesterday, I realized that I actually had a pretty good week Tuesday through Friday, but then--again--I crashed badly on the weekend. This time, it was even more severe, and I was mostly bedridden/couchbound for four days. Today, I am sitting up partially again in the recliner, so that is a huge step forward, but I still have symptoms, very low energy, and am feeling very fragile. I'm trying to be very, very careful and take it easy and extremely slow.

So, here's my weekly chronic illness vlog, where you can see for yourself a very honest view of my life last week. You can watch it on YouTube at this link or below:

I would love to hear from YOU!

How was your week and how are you doing so far this week?

What helps you get through the rough times?