Chronic Illness Tracking: Symptoms, Treatments, Exertion & How I Feel

For over 21 years now, I have used a simple system to track important aspects of my chronic illnesses at the end of each day: how I felt, my exertion and stress levels, any unusual symptoms, and stopping/starting/changing treatments. I just take five minutes to jot down a few numbers and a few notes on a calendar before bed. Over the years, this data has helped me to get diagnosed, find patterns in my symptoms (including how much exertion or stress leads to a crash/PEM), and figure out whether or not treatments are helping.

In this brief new video, I explain how and why I do this, so that you can set up your own tracking system that works for you. You can watch it on YouTube or below:

 

My system is still mostly paper-based (other than heart rate tracking and step counting), so if you use apps or other electronic means of tracking, I'd love to hear about it.

How do YOU track symptoms and other aspects of your chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Holiday Help for the Chronically Ill

I have been immersed in holiday preparations (I successfully did a little bit each day this year to avoid the last-minute rush!), but I wanted to take a few minutes to wish you all a happy holiday season and to offer some tips, support, and fun to help you through this often-difficult time for those with chronic illness.

First up, the part of the holidays I struggle with the most (and many of you, too, from your posts and comments) is family relationships, which can be challenging when you're chronically ill. Those challenges multiply with the stresses and expectations of the holiday season. That's why I wrote Managing Family Relationships - Holidays and Beyond, which is excerpted from my book. This article/chapter provides practical tips to help you not only manage relationships but even enjoy the holiday season, in your own way.

Last year at this time, also in a time crunch without time to write my own post, I collected Chronic Illness Tips and Support (and Fun!) from other chronic illness bloggers and writers. Check out that round-up of support, practical advice, and some time-out fun, too. There is a lot of collective wisdom in the large chronic illness community!

Finally, when you just need to take a break from all the activity and people and noise, check out Movies and TV for the Holidays (or Not!), my own collection for the season. I included some of my favorite holiday movies, old and new, and some outstanding, uplifting non-holiday movies and TV shows, if you just need to escape for a bit. Re-reading this list reminds me of how great these films and shows were!

OK, that's it for me until after Christmas. I still have a few more decorations to put up, cooking to do tomorrow, and my son and his girlfriend are coming for dinner in a bit. Trying to pace myself!

How are you doing this holiday season?

Do you have any tips or favorite holiday movies and TV shows?

Please share in the comments.

Enjoy the holiday season, in whatever way you can!

Weekly Inspiration: Finding Joy in Every Day

For this week's living with chronic illness inspiration, I have a new video, Finding Joy in Every Day, on my YouTube channel. It's adapted from a chapter in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, and discusses some simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness. These simple steps have really helped me.

 

 

I don't know about you, but this is a very stressful time of year for me, plus we've had extra stresses caring for my elderly father-in-law and going to an out-of-town family funeral. More than ever, I need to recognize the small moments of joy in every day, learn to see them and make more of them, and make time for myself.

I hope you find this video helpful.

What everyday moments bring YOU joy?

Tell me in the comments below.

You can also connect with me on Twitter and on this blog's Facebook page. There are kind and supportive chronic illness communities in both places. Connecting with others like me brings me joy!

Weekly Inspiration: A Plan B Day

One of the chapters in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in the section on Daily Living, is called "A Plan B Day." It describes a simple premise that really changed my life and allowed me to stop fighting against my illness's whims and listen to my body. I recorded a short video yesterday to explain the concept, with some simple steps to follow for those days when you wake up with plans but a body that is in can't-do mode:

 

(Or you can watch it on YouTube here, where you can also Like and comment on the video, plus subscribe to my channel for more videos).

And then ... I woke up today with a list of errands I planned to take care of ... and feeling completely wiped out!

As usual, I started out thinking, "but I have to ...," but then I realized I should take my own advice! I thought about each of the stops I planned to make and decided I could put it all off until Friday (Thursday I have a dentist appointment). I went downstairs for breakfast, told my husband it was a Plan B Day (he knows what that means!), and he said he could grab a few urgent items from the store this afternoon. With my Plan B in place, I settled into the couch, with my super-soft comfy blanket, rested all day, and listened to my body. Hey, it really works!

Check out the video and then tell me about YOUR experiences with days when your body just won't cooperate with your plans and if you've tried making a Plan B (or whatever your own process is!).

You can find more information on my book here.

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: Dec. 30, 2020 - Holiday Edition

I hope you are enjoying the holiday season, in whatever ways you can! 

As you may have noticed, my own holiday season has been BUSY--that's what's kept me from writing blog posts, other than some quick TV and movie reviews this month! (but those are fun; see below).

 

My Update

As I reported in my last update, it's been a very rough year for me, with a downturn that started in March. I have battled a reactivated virus (HHV-6) and a recurrence (still) of my Lyme disease. I reported then (at the beginning of December) that I was feeling much better and was finally back to my "normal" baseline, but I don't think I am quite there yet. 

I am still achy much more often than usual (aches and other immune symptoms had become rare for me, thanks to a variety of treatments), and my stamina is still well below where it was at the start of the year. That could be due in part to a loss of fitness in not being able to keep up the exercise routine I've managed for years (very carefully monitored walking and short bits of muscle work while lying on the ground), but I also think PEM is still worse than usual. Since feeling a little bit better this month, I have tried to resume those habits, with some success, but I still crash and have bad days far more frequently than I used to.

Enjoying a walk in the sunshine with my husband

 

Holidays

And, of course, I really can't draw any solid conclusions about December because ... it was the Christmas month! Despite my annual good intentions to start early and keep things simple, I still ended up with a solid three weeks' (at least) of packed-full, stressful holiday preparations. 

Since we couldn't see any extended family this year, I decided to make photo books for three branches of my family. The first two weren't too bad, since I already had digital photos for those, but the third one--for my 95-year-old father-in-law--required a solid week's worth of exhausting effort. I sorted and organized thousands of loose snapshots stuffed into an old suitcase we'd brought from his house in Oklahoma when we moved him out here. From those, I picked a couple hundred to scan (another full day, hunched over the scanner and laptop), and then finally put the book together. I am glad I did it, and he's really enjoying it (and I'm hoping it will help a bit with his memory, too), but the three projects really took a lot out of me. Then, of course, there was all the rest of the holiday preparation: shopping, wrapping, cooking, decorating, cleaning (some of that just didn't get done!).

Christmas morning!

 

So, as usual, I was pretty exhausted by Christmas Day. It was just the four of us this year, which helped, but our older son didn't get home until about 2 pm, and we had the added pressure of trying to schedule Zooms and Facetimes and phone calls! That's where I finally hit the wall. My mother and I had been texting back and forth all day and were going to Zoom right after dinner. She and her husband ended up having multiple Zoom calls with his family and pushing back our time again and again, until at 9 pm, she said they were ready! Even on an ordinary day, I am flat on the couch by 7 pm, and on this busy day in a busy week in a busy month, I had completely crashed by dinnertime. I was on the couch, wracked with horrible aches, and ready to try to get upstairs for bed. I texted my mom that it was too late, I was very sick, and could we do it tomorrow? I've had ME/CFS for almost 19 years now, so she should be used to this, right? No, she lives in a world of denial and avoidance. She texted back "It's only 9 pm! You can sleep in tomorrow." As if I was a healthy person and that was even the issue. That lack of understanding (again) pushed me over the edge. I burst into tears, told my sons to call their grandparents, crawled up the stairs to bed, and lay on my bathroom floor sobbing--just overwhelmed with exhaustion, pain, and grief.

I was, of course, badly crashed the next day, but I could just lay on the couch, enjoy my sons' company, and recuperate. Lots of leftovers! And I felt a lot better by that evening and the next day. So, looking back over December, I think probably a lot of my issues stemmed from not listening to my body, pushing myself too hard, and not resting enough ... though I still don't know why I've been worse than usual all year. 

So, lesson learned (for the thousandth time): Listen To Your Body!

 

What We've Been Watching and Reading

A Bookish Christmas!

As usual, we have all been reading all month. I read every day, before my nap and before bed at night with my husband. And we all gave and received lots of books on Christmas! You can check out each of our stacks of new books on my book blog--this photo is just my husband's pile. And in my Monday post on the book blog, you can see what we are currently reading.

At the start of the month, my husband and I finished watching The Queen's Gambit on Netflix, which was outstanding, just like everyone said! I really did not think I'd enjoy a TV show about chess, but I gave in to all the rave reviews from my friends, and we were so glad we did! It's a stunning story (based on a novel) of an orphaned girl who becomes one of the top chess players in the world. Much of it is set in the 1960's, so the settings, hairstyles, and--especially--the fashions are a visual treat. You can read my full review (no spoilers) at the link and watch the trailer there, too.

On one of my crash days this month, I did something I rarely do and watched a holiday movie. I'm not really a fan of the Hallmark/Lifetime type movies, but Holidate on Netflix had plenty of snark and turned out to be the perfect choice for me that day. It's a light, fun rom-com not only about Christmas and New Year's Eve but about all of the holidays all year when a couple of singles decide to be each other's "holidate" to take the pressure off. Very funny, warm, and lots of fun. Again, my full review and the trailer at the link.

My husband and I watched another holiday movie the weekend before Christmas, Happiest Season (on Hulu). I'd heard so much about this movie (including from one of my favorite podcasts, Pop Culture Happy Hour). It's a rom-com that's not quite typical, about a lesbian couple. One girlfriend brings the other home for Christmas to meet her family, without disclosing that her family doesn't know she's gay! As you can imagine, hijinks and hilarity ensue. The best thing about this movie is its all-star cast; even the supporting actors are excellent in their roles.

While sorting through all those photos in December, I was looking for a light, fun show to watch that wouldn't require all of my attention. In the holiday spirit, I chose Dash and Lily, a holiday rom-com that takes place in New York City. Two teens "meet" each other through a scavenger hunt type thing that the girl, Lily, sets up. They don't know each other in person but communicate through the journal they trade back and forth at various New York spots. Of course, Lily loves Christmas, and Dash is a Scrooge, but that's all part of the fun. It fit the bill: light, warmhearted, and funny.

 

How are YOU doing this season?

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.

 

 

News from Our House - August 20, 2020 - Another Crisis

We're experiencing another hectic, crisis-filled week here, but I wanted to take a few moments out for a quick update: I am still here and still interested in hearing how all of you are doing!

A New Crisis Pops Up

As I reported in my update two weeks ago, we lost power for two days when a tropical storm came through and then, last week, we lost power again for five days (while it got hotter and more humid!) and both of our laptops quit working on the same day, the day the electric was finally restored. I just got my laptop back this Sunday--almost six days and $280 to tighten up some cables! I was ready to finally catch up (I hadn't been able to get reliably online for two weeks at this point and had--still have--700 unread e-mails) and get some work done when another crisis hit.

Our son turned 26 this week. This is a big milestone in the U.S. because adult children are allowed to stay on their parents' health insurance until age 26 (thank you, Affordable Care Act!). We knew this deadline was coming, and our son is unfortunately still not well enough to live independently, so we submitted the proper forms from us and his doctor to keep him on our insurance. Much to our surprise, our insurance company agreed that he's disabled but concluded he could support himself! With that conclusion, his health insurance expires on August 31, and we would be forced to purchase a separate policy for him in the open market. This is a big deal because the health insurance through my husband's job is excellent, partly subsidized, and we have had it for 30+ years.

So, this week had one goal and one job to get done: prepare and submit an appeal for the insurance company. I focused all of my writing time on a letter from us, his parents, describing his symptoms, level of daily functioning, etc. I also spent a lot of time e-mailing and working with four of his doctors to get supportive letters from them. In short, it's been an all-consuming and very stressful project.

Yesterday, I hit an unexpected issue. In trying to convince the insurance company how bad off my son really is and how incapable he is of supporting himself, I got really depressed. My husband and I were both in tears. We normally try to stay very optimistic. If you read this blog, you know I am always looking for new treatments and ways to help our son. I have a very can-do attitude. As for our son, all he wants in the world--like all of us--is simply to live a normal life: to be well enough to live independently, earn a living and support himself, and get on with his adult life. That's impossible right now, but we try to remain optimistic that we can further improve his condition, especially after a serious relapse last year. So, to have to focus on the negative side and prove to them that he can not support himself just really got to me. I turned, as I always do, to our wonderful group for Parents of sick kids, and, as always, they provided much needed compassion, understanding, support, and practical help. If you have a child, teen, or dependent adult child with ME/CFS and/or related conditions, check out our group at the link (if you want to join, be sure to answer the questions that pop up after clicking "join").


My Health Improves

Ironically, in the midst of all these crises and stresses, I am feeling better than I have for five months! You may recall from my previous two updates that I had relapsed back in March, without knowing why. My doctor found that HHV-6, a common virus, was again reactivated in my body (this is a very common occurrence in those with ME/CFS, that normally dormant viruses became reactivated). In response, she put me on an antiviral, Famvir, that has worked well in the past for me. For the first two months, though, I struggled with Herxing (a temporary worsening as the meds kill off the virus, flooding the bloodstream with it, and setting off an immune reaction). I finally got the dosing right and got past the Herxing stage, I guess, because I have actually felt good recently! In spite of all the stress, my energy has been good, and I feel back to my "normal" baseline (which means still needing a nap in the afternoon but functioning fairly well otherwise). I have even been able to get back to exercising, both my weight/muscle routines and now that the weather has cooled off a bit, walking more regularly. What a relief!

What I'm Reading and Watching
(links are to my own reviews, where available)

I am still reading David Copperfield by Charles Dickens and loving it! I read a lot of Dickens in high school and always enjoyed his novels. Last summer, I re-read Great Expectations (listening to it on audio) and really enjoyed it, often laughing out loud as I walked around my neighborhood with my earbuds in! David Copperfield  is similarly funny, warm, and touching. It's easy to see why Dickens is a classic--he has such a way with words! So many of his sentences just stop me in my tracks because they are so clever and such a perfect way to say something, often with humor. It's also a wonderful story, with so many unexpected twists. On audio, I am still listening to American Dirt by Jeanine Cummins, a novel about a Mexican mother and son who must go on the run after a drug cartel kills their entire family. It's excellent so far, riveting and fast-paced.

On TV, we just finished what's available of two of our favorite shows, season 4 of Better Call Saul, and season 2 of Sex Education. Both have that perfect mix of warmth, humor, and compelling (though very different) plots. Fortunately, season five of Saul already finished airing on TV, so it should be coming to Netflix (soon, I hope), and Sex Ed just announced a third season. We are also watching the surprise second season of The Alienist (currently airing on TNT), Yellowstone (new to us but we are enjoying it), Lie to Me, a unique crime drama about lying, and the third season of In the Dark, an excellent suspense/crime show about a blind woman who witnesses a murder. Oh, and we just started Halt and Catch Fire, about the massive changes in the computer industry in the mid-80's--it's just as great as everyone has said! Review to come on that one.

How are YOU doing this week?

And what are you reading, watching, and enjoying?

I am happy to report that my problems with comments not showing up on this blog are partially improved--many more are showing up now after a change to the settings. They are still not all coming through, but give it a try! 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.

News From Our House - August 12, 2020 - Storms & More

As I wrote in last week's update, we got through Tropical Storm Isaias with a 2-day power outage and were happy to be back to "normal life." Little did I know ...

Truth is Stranger Than Fiction

If I read about our life this past week in a novel, I would think, "Well, it's a good story, but it's not believable." Probably most of us with chronic illness have felt this way at one time or another!

After that 2-day power outage from the tropical storm, life did return to normal but not for long. I went grocery shopping Thursday and restocked our fridges and freezers (including more ice cream!). I was in the middle of writing a post for my book blog Friday afternoon, when a sudden, violent storm hit, and we lost power again. It seemed even worse than the tropical storm that came directly through, and we later found out that four inches of rain fell in less than 30 minutes, and a tornado with 105 mph winds came through very close to us!

We settled in for another day without power but hoping it would come back sooner. Nope. We were without power for five days! It got hotter and more humid with each passing day. We were drenched in sweat at all times, which was especially challenging for my son and I with ME/CFS, as we have both become very heat intolerant. As my son said, the best approach was to just move as little as possible! He read four books last week, my husband and I scrambled to try to save as much food as we could in coolers (with daily trips for more ice), and we all waited for the power to come back any minute ... We slept in the basement, but it was even warming up down there after several days.

Sleeping in the basement

Our cell service was also partially out, since the first storm, so we could sometimes get texts out but calls were almost impossible (including calls to the electric company!). Finally, my husband found a small generator on Monday (they had been all sold out since the tropical storm). It wasn't enough to run our fridge/freezer, but we could run fans--what a marvelous invention!--and my husband hooked up the server so we got WiFi back.

Tuesday morning, the power was still out, but at least we had WiFi, I thought ... until I tried to start up my laptop. Nothing--just a black screen. Bizarrely, my husband's laptop wouldn't start up, either! That's just crazy--they were not connected in any way and both died on the same day. I could hear mine running but couldn't see anything, so I drove to the nearest Apple store (ahhh ... air conditioning!). Sure enough, the display screen wasn't working. They tried some on-site adjustments but finally decided they had to send it out for repairs/replacement: 5-7 days! That same day, my cell phone (a very old talk-and-text-only cell phone) started malfunctioning, and I realized its on/off/home button wasn't working. But, by noon on Tuesday our power came back!

Hurray for our new generator ... and for fans!

Looking on the Bright Side

It's been quite an ordeal, but of course, we were fortunate that no one in our family was hurt, and our house and cars were not damaged. One evening as the four of us ate dinner (cooked on the grill) around the kitchen table in the dark, with a little camping lantern for light, I remarked to my family that if I had to be quarantined and stuck without power, I was glad it was with them! The days spent alone in the house together brought back memories of the early days of chronic illness here, when three of the four of us were sick, and we got used to enjoying each other's company almost exclusively. Those days were very, very rough, but they definitely brought us all closer together.

The four of us on vacation last year - luckily, we enjoy each other's company!

Also, with my laptop in the shop, my phone faltering, and our cell service shaky at best, I finally gave in and joined the modern world. I went to Verizon today and got my first smartphone! Since I use a MacBook, I got an iPhone SE. Of course, all my contacts are in my laptop somewhere in New Jersey right now, but I'll get it all set up when I get that back. My mother is the most excited because she loves to send emojis, GIFs, and bitmojis, and she couldn't send them to my old-school phone. My sons are also glad I joined the 21st century.


Feeling Fine

Ironically, with the massive stress and intense heat, I have actually been feeling better than I have in many months! I think I finally hit the sweet spot with my antivirals, knocked back the HHV-6 enough, and got past the Herx reaction to the feeling better part. I am still only taking a half dose (half a pill of Famvir a day), but my energy has been good--great today, in fact, with the a/c back on! I managed yet another restocking trip to the grocery store today, after throwing away three big garbage bags of food this morning.


What I'm Reading and Watching

Just in time for the power outage, I started my next book for my Big Book Summer Challenge, David Copperfield by Charles Dickens. Yes, it is a hefty one! I am absolutely loving it so far, as I always do with Dickens--both laughing out loud and exclaiming at the horrifying bits. On audio, I just started listening to American Dirt by Jeanine Cummins, and it is wonderful already. Boy, was I glad I had moved a new audiobook from my laptop to my iPod just before my laptop gave out! You can see what all of my family has been reading during this crazy week at my book blog.

Since we had no TV, cable, or WiFi for most of the week, all of our usual shows that I mentioned last week were on hold. We're getting back to them now. During the power outage, we reverted to our camping habit: watching DVDs on my old laptop. Our favorite? Dexter! Yes, we are well aware of the irony of watching a show about a serial killer (though Dexter is a good serial killer) in dark campgrounds late at night! We are on season 6 and enjoying it very much. It definitely helped to provide a little treat at the end of each hot day for my husband and I.

So, that's been our mad, mad world here! 

How are YOU doing this week?

And what are you reading, watching, and enjoying?

I am happy to report that my problems with comments not showing up on this blog are partially improved--many more are showing up now after a change to the settings (I ran a bunch of tests last week). They are still not all coming through, but give it a try! 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.

News From Our House - August 5, 2020

Happy Wednesday! I am back with another weekly update from our house (like my new graphic?), just to stay in touch and let you know what's going on. I have a few things in particular on my mind this week:

The Joys of Electricity

Let me count the ways ... Tropical Storm Isaias came right through here yesterday, and even though it had been downgraded from a hurricane by then, it still did plenty of damage. Huge trees toppled all over our state. Tornados touched down and ripped down trees, overturned cars, and in one memorable photo (below), removed the entire back wall of a house! The parking lot of our local supermarket, just a few miles away, flooded so deeply that an entire car got swept into the storm drain and stuck. When three people tried to help the elderly driver of the car get out, all four were swept by the strong current through the culvert and came out on the other side of the shopping center! Miraculously, they were all OK. My husband drove past there yesterday and wondered why on earth there were giant Zodiac rescue rafts at our local supermarket (now we know).

Photo from Delaware News Journal

Given all that, we were quite lucky in that we only lost power, along with 100,000 other households in our tiny state. It was inconvenient (and hot and muggy), but we were fortunate that the temperatures this week have been in the mid-80's (F) instead of the high 90's, as they were for most of July. We made dinner on our grill (pro tip: whenever you buy a gas grill, get one with a stove burner on the side), hung out together without TV, internet, or video games, and were just barely able to sleep in the humid 69-degree night. When we called the electric company again this morning (Wednesday), they said our power would be restored ... by Friday at noon! That induced some panic, as our son was struggling to sleep on the hot second-floor, I was wondering how I'd manage to nap in the heat of the afternoon, and everything in our two refrigerator-freezers was steadily warming/melting (we ate all the ice cream last night before it turned to liquid!). As we were making plans and filling an ice chest with ice, surprise! The power came back on. We are very happy to be living in the 21st century again, and I am happy to be online again and connected.

Our grill burner saved us again!

The Power of Pain

Speaking of power, I have been thinking a lot this past week about the power of pain. I explained in last week's post how I got a bad burn on my stomach when a pitcher of iced tea exploded, throwing boiling water at me. I had no idea then that things would get much worse. The burn seemed to be healing well, thanks to loads of aloe vera, until the large blister broke, leaving tender, raw tissue exposed. This has been extremely painful all week. It also meant I needed to bandage the area (after smothering it in antibiotic ointment to avoid infection). The burn itself is painful, but the tape from the bandages has also irritated my skin, leaving a pink, painful/itchy rectangle around the burn! Each day is a test of endurance, trying to find a new way to bandage the exposed area without putting more tape on the already-irritated skin, and by the end of the day, I am just about in tears. It hurts for even loose fabric to rub against my skin, so I often tuck my shirt up into the bottom of my bra to expose my belly ... and believe me, that's a sight no one wants to see! My bikini days are long past.

So, my question for all of you is: how do you handle constant pain?

Chronic Pain is Exhausting.

Pain has never been a part of ME/CFS for me, except for flu-like aches during a crash or the joint pain from Lyme disease (which quickly retreats when I treat the infection). I know that many with ME/CFS and similar conditions experience chronic pain on a daily basis, including my own son who always has joint pain from Lyme and bartonella. I am discovering that the pain just completely wears me down. By the end of the day, I am in a bad mood, exhausted, ready to just rip the skin off my stomach. My greatest empathy goes out to those who live with pain every day. I am in awe of your strength.

The Blues

And that brings me to the blues. This past week, several times, I have just felt inexplicably depressed, especially in the afternoon and evening. I suspect much of it is physiological, the result of the constant pain and irritation, plus I am still struggling to get the dosing right on my antivirals, so my energy has been very poor for months. Last Saturday, after my nap, I was feeling particularly down and couldn't figure out why when I spotted something I had said to someone else on Twitter that very morning:

"Feel free to wallow today, if that's what you need. Be kind to yourself."

That really resonated with me, and I realized I needed to take my own advice. I gave up on trying to get things done (I have some serious issues over always trying to be productive), went out to our screened porch with a glass of decaf iced tea and a piece of extra-dark chocolate, and just took some time for myself. I browsed through a magazine and played an online game (I am getting really good at Word Wipe!), and though I wasn't exactly ebullient afterward, I did feel a bit better. Self-care is so important, and I am so bad at remembering that! With my whole family home (and here all the time), I have very little quiet time to myself lately, and I think that is part of the problem, too. I should remember to listen to my own advice more often!

Spending time on our screened porch is relaxing.

What Are You Reading & Watching?

I just finished reading Normal People by Sally Rooney, a highly acclaimed novel that was recently made into a Hulu TV show. Don't laugh, but I chose it because I needed a lightweight paperback that I could hold up and didn't have to rest on my painful stomach! It was very good, and I want to watch the show now. Today, I started David Copperfield by Charles Dickens, a birthday gift and a classic I have long wanted to read! This one qualifies for my Big Book Summer Challenge (there's still time to join the fun!), so it is difficult to hold it up without touching my stomach, but I am determined to make it work. Here's what my whole family has been reading this week.

On audio, I've been listening to The Dutch House, a novel by Ann Patchett. It's read by Tom Hanks, and I am finding it hugely soothing and comforting to hear that familiar voice reading me a story in my earbuds. As you would expect, he's doing an amazing job with it and completely inhabiting the main character/narrator. Oh, and it's a good story, too, about a brother and sister and the house they grew up in.

On TV, we are watching so many great shows right now! Let's see ... we are rotating through episodes of Better Call Saul, Yellowstone, Lie to Me, the much-anticipated second season of In the Dark (sooo good!), the unexpected second season of The Alienist, and we just finished the excellent second season of Hanna. On my own, when I could find 22 minutes to myself, I just finished watching all three seasons of Atypical, and I am missing it so much! It is a truly outstanding family drama about a young man with autism and his family, and it has both heart and humor. I know it's good because I finished it more than a week ago and can't stop thinking about it (luckily, season four is coming in 2021). On Saturday night, we watched a movie, Transiberian, that was very good--an action-packed thriller with a great cast, set in the Siberian winter. (My reviews at the links.)

What have you been watching and reading lately? I am always looking for suggestions!

Tell me about your week in the comments below or on my Facebook page or on Twitter.

(Note that I am still trying to resolve my problem with comments from mobile devices not showing up. It is especially frustrating because my other blog is set up exactly the same and still works just fine, and Blogger has no support at all ... but I am continuing to try to get to the bottom of it!)

Weekly Update July 29, 2020

I am still having trouble finding the time to write all the blog posts I want to write here! I have a long list of posts planned: an update on my son one year after his relapse and new diagnoses and treatments, research updates, and another COVID-19 and ME/CFS update. But those kinds of posts take a lot of time and energy and research. Things here at my house are still super-hectic.

So, I thought I might try some shorter, quicker weekly updates, about what's going on medically with my son and I and what's going on personally with me, too. I realized that I used to write multiple posts a week here when I first started the blog, using it as more of an online journal (for a little nostalgia, you can check out my posts from July 2006!). These days, much of that day-to-day chatting occurs more on my Facebook page and on Twitter. So, I'm going to try going old-school and posting updates here on the blog more often. Please let me know what you think about that and which kinds of posts you like the best! (Note: I am having a problem with Blogger not showing comments made from mobile devices, so if that's you, you might try commenting on Facebook or Twitter, at the links above, for now, while I try to resolve the issue.)

Viruses and Other Infections

Still no sign of COVID-19 in our family, thank goodness, but as I explained in my post earlier this month, Crashes, Infections, and Treatment ... Oh, My!, my Lyme disease relapsed this winter, which was probably the cause of the HHV-6 virus reactivating in me this spring, causing a long--and these days, unusual--crash. As I explained in that post, I am treating it with Famvir (an antiviral) but started out on much too high a dose and Herxed (worsened) considerably. I'm happy to report that I figured out the dosing. I stopped taking it entirely for a few days, and once I felt better, restarted at just a half pill every 3 days (normal dose is 1 pill per day). It took about 6 weeks, but I am now up to the full dose, taking one pill a day, and feeling pretty good. I am theoretically able to take walks again, though it's been far too hot and humid here!

On the Lyme front, this relapse came just about 15 months after the last one (it's usually more like 3-4 years), so I have added some things to my treatment protocol (based on advice from my son's Lyme specialist). Stephania extract is supposed to help draw the infection out of the tissues where it hides (that's how the Lyme bacteria manages to hang on for so long in many people). I was careful with that one because the label said to be cautious if you take beta blockers (which I do, for Orthostatic Intolerance, OI), but I kept the dose low-ish and haven't noticed any side effects. I am also taking Samento aka Cat's Claw, a common herb used to treat Lyme and other tick infections, which is also supposed to help pull it out into the bloodstream where it can be treated. Those two are in addition to the A-L Complex (part of the Byron White protocol). I recently reached the full dose of Samento (the latest one I added), so I'll give it a month or so at this level and then try stopping treatment again. I haven't had any obvious Lyme symptoms in months. It's all so complicated!

Other Medical Issues

As if ME/CFS, Lyme, and assorted infections wasn't enough to deal with, I've had a couple of unrelated crises come up this past week. Last Friday, I was making a pitcher of iced tea, and when I poured boiling water into the glass pitcher (as I always do), it exploded! The pitcher only broke into a few big pieces, but the boiling water was hurled all over (including straight at me) at great velocity. It hit me in the stomach (again, so grateful there was no glass as well), leaving a pretty bad burn in a ring around my belly button. It was mind-blowingly painful that day, but I used cool water compresses and LOTS of aloe, and it is gradually healing, There's one blister, but otherwise, it's getting better every day. The combination of pain and adrenaline left me completely wiped out the next day, as you can imagine.

Earlier that same day, I began to notice a dark spot on the edge of my vision, so I went to see my eye doctor yesterday. It's not a floater--it's just one dark spot that stays in the same place; I can see it in the right eye when I look to the right. She did a thorough exam--twice!--and couldn't find any sign of retinal problems or anything else, so that's a relief. Just a "wait and see" thing for now; hopefully, it will go away by itself.

Family Crisis

Our biggest issue here the past few months has been my 95-year-old father-in-law. He lives in his own apartment in Independent Living but has, of course, been isolated since March. They closed the dining room and have been delivering meals to the apartments, and even though it's not a nursing home or assisted living, the company that runs it has forbidden residents from leaving the building. Bottom line is that we saw a gradual decline in him, mentally and physically, with the isolation. He was OK on Father's Day, when they finally allowed us to visit with him outdoors, but then he declined sharply in the month after that. We treated a mild UTI (which can have a serious effect on senior's cognitive function) and hired in-home care to stay with him three hours a day, five days a week. That just started two weeks ago, but between that and treating the infection, he has improved somewhat. The downside is that it is very expensive, and he won't be able to afford it for long. So, my husband was running over there twice a day (down to once a day now), and I spent many hours on the phone calling in-home care services and assisted living facilities (which are all still on complete lockdown here, so we would no longer be able to see him). It's been a very difficult and stressful situation, and we're not out of the woods yet, but we had a nice socially-distanced visit with him outdoors on Sunday.

Visit with my father-in-law

Good News

Just to end on a positive note, among all the stress and crises have been some good times, too. As I've been feeling better, I've been able to start walking again and occasionally meet a friend or two for a shady walk at our local nature center. We've had temps in the 90's with high humidity and heat indices in the 100's the last couple of weeks, but sometimes we can get out in the morning before it gets too bad.

Covered bridge at our local nature center

I even enjoyed an evening out with my two closest friends this week! We got Thai take-out (and ate it at a long table, well-separated!) and caught up - we've missed each other. Then, we relaxed in recliners and watched Hamilton on her big screen TV. Broadway needs to add recliner seats to its theaters! It was my first time seeing it, so I was very excited--and yes, it was as good as everyone has said. The songs are still rattling around in my head.

In the midst of a very stressful day and week, we celebrated my 55th birthday last week. It had been a rough day for me, but I had a very enjoyable evening with my husband and adult sons. The four of us actually ate OUT at one of my favorite restaurants (they have a huge outdoor patio, with lots of space between the tables). It was wonderful to just be out again, the shade and breeze made it a decent evening, and the food was delicious. I even had an 8 oz. beer! Then, we came back home for a mocha cake from a local bakery, and a pile of presents. It was a very relaxing, nice evening with my family.

Wow, my quick update turned out to be pretty long, but you're all caught up now! I'll try to keep up with shorter weekly updates. Let me know what you think.

So, how are YOU? How's your summer going so far?

P.S. If you like to read, join my annual Big Book Summer Challenge over at my book blog! You just need to read at least one book of 400 or more pages by early September. I've had a record number of people sign up this year--I think everyone is happy to have something fun (and safe) to do! So, join the fun (and yes, audios count, too).

Weekly Inspiration: Roll with the Punches

Stress and anxiety are sky-high at our house lately. My 95-year-old father-in-law has been struggling during the pandemic, and we've seen a decline in him both physically and mentally because of the isolation (he's still in independent living, so my husband visits, but he can't leave his building and spends every day just sitting in his apartment). We were finally able to get the whole family together with him on Father's Day for an outdoor socially-distanced visit, and he loved it! We brought his favorite McDonald's meal (his favorite meal, period - ha ha), gifts, and got him telling old stories. In the days following our visit, he seemed more engaged and mentally "with it." So, we tried another outdoor visit that following week, just four days later, but he was confused the whole time and couldn't even remember old stories he's told thousands of times.

Since then, he's fallen off a cliff, cognitively. He hasn't had a single lucid moment in weeks now and just gets worse and worse. My husband is running over there (about 20 min from our house) at least twice a day because he's completely forgotten how to care for himself. Meanwhile, I spent my week first calling services that offer in-home care (much too expensive on top of his rent) and now, assisted living facilities. We were determined not to move him into assisted living during the pandemic because we won't be able to see him, but we no longer have a choice. We are working with his doctor to test for UTI and other possible causes of this sudden decline, but he was already going downhill, and this may just be his new normal.

The stress for my husband and I has been huge. I spent all day Thursday crying, after a very upsetting phone conversation with my FIL where he barely knew who I was. I just couldn't stop sobbing! It was all the accumulated stress boiling over. Then, I got back to my phone calls. We've both just been feeling completely wrung-out, and of course, that emotional stress resulted in a physical downturn for me, too--I was useless on Friday, and my husband had to get our weekly groceries in addition to his visits to his dad. Luckily, he had the day off work, at least. I am feeling so fragile that I have been avoiding the news and even mainstream social media (my connections in the chronic illness world feel like my only "safe places" right now!) because they just add to the stress and anxiety.

All of this is a long way of telling you that I've been thinking about how we handle stress and was going to write about it today ... then realized I already wrote about this topic in my book! Here is a reprint of the chapter titled Roll with the Punches, which is all about what to do when a crisis hits. You might also be interested in a couple of my recent posts, each of which has lots of tips and ideas: Dealing with STRESS and Coping in a Crisis. I sincerely hope your life is crisis-free right now, but I think we could all use some help with stress!

(Note that this chapter was first published as an article on the ProHealth website on August 26, 2018; it was edited for my book, and this is the edited version.)

Roll with the Punches

We recently had a tough year with a lot of unexpected crises that created emotional stress, financial problems, and the need for fast action. Most significantly, one son was assaulted in Europe and had to return early from a study-abroad program due to a serious concussion. During that trying time, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that so many years of living with chronic illness has taught us how to go with the flow when things go wrong.

I have learned to expect the unexpected while living with ME/CFS myself and having two sons with the same disease, one of whom also battles tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute, couldn’t go to my book club, or had to call off a family trip. It’s never fun, but you do get used to the rollercoaster life.

Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. For example, when my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.

When we got that unexpected phone call from our younger son in Europe, of course my husband and I were very upset. However, with so much experience with crises under our belts, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to comfort him and to assess his progress (or lack thereof). When it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.

Back home the next day, our son kept thanking us for acting quickly and bringing him home. He’s never been so grateful! We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to. He told us, though, that his first week there had been amazing; he’d seen and done so many wonderful things and learned a lot.

Within a month, he was almost fully recovered from the concussion. He could think clearly, had returned to normal activities, and his headaches were almost gone. His professor worked with him on an individual project to get credit for the course. Our travel insurance (we never travel without it) came through with reimbursement to us for the outrageously expensive last-minute plane fare soon after.

In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis.

Here are some tips for when the unexpected happens to you.

Take Time to Grieve

It’s important to acknowledge and feel the raw emotions that come up when something bad happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary.

Start Moving Forward

Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.

Face One Day at a Time

Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today—or even just this minute. Taking things one step at a time will help you to stay calm and able to help.

Seek Support

A few days into the crisis around our son’s concussion while abroad, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured. I knew they would get it, though. And they did. I vented all of my concerns and anxiety to our private group; as always, they responded with compassion and understanding. It was just what I needed. Try to find the right source of support for your situation, whether that’s a friend, support group, or therapist.

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Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on—it’s going to be a bumpy ride!