Chronic Illness Holiday Update

Wow, I knew it had been a while since I had the time or energy to post here, but I see it's been three weeks! Sorry about that. I am still in the throes of a bad relapse of my ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome)--about two and a half months now--and the holiday season has been rough.

I've had terrible flu-like aches every day for about the last 10 weeks, so I know my immune system is in an "activated" or hyper state. But I have no idea what triggered it this time. When the same thing happened at the same time last year, it turned out to be a flare-up of yeast overgrowth (common in ME/CFS; treatments at the link). So, I first tried a stronger prescription antifungal than I normally take for a month. However, I've been sticking to my stricter keto-style diet all year (which has been very effective), and I double-checked with TWO visits to my dentist, who confirmed there was absolutely no sign of thrush or yeast overgrowth. So, my best guess is that this lengthy crash was "just" triggered by exposure to some random virus, like a cold. Though I wear a mask out in the world, my son comes home sometimes, and we occasionally have close friends over and eat together. Who knows.

I also tried two short (5-day) rounds of prednisone (a steroid) to try to calm my immune system down. That did help a little bit (especially the second round)--and I added two more days just to get through Christmas--but I'm still not back to my normal baseline. I still have those flu-like aches every day, though they're not quite as severe as before.

You can hear all the details in my recent Chronic Illness Vlog, recorded two weeks before Christmas during that first round of steroids. It's an honest peek into my daily life for a week: the good, the bad, and the ugly! You can watch the video on my YouTube Channel or I'll include it below.

So, I was in pretty bad shape on Christmas Eve and Christmas Day: off the steroids and had overdone on Sunday, trying to help my husband a bit with cleaning and decorating (I know better but he's been doing everything). That's why I restarted the steroids--just for 2 days--on Christmas. I didn't sleep well Christmas Eve in the early morning (too worried about everything I had to do!), so I was pretty wiped out. I somehow just zombied through my day with a smile (and a mask) on my face. Our son (with a bad cold!) and his girlfriend came to visit, as did my mom and her husband, our usual crowd for Christmas Day. We smartened up this year and ordered the food in--a full turkey dinner that was delicious! It still required some work to get everything warmed up, table set, etc. but everyone helped. 

Christmas dinner

I was quite a bit better yesterday after a much better night's sleep (it sucks how one hour of sleep more or less can mean functioning OK versus feeling horribly sick). So, I managed to enjoy our annual cookie decorating/Grinch party with our oldest and closest friends--a cherished tradition, even though the "kids" are in their 30's now!

The cookies we decorated last night!

And today, everyone had gone back home, my husband and younger son went golfing, and I had a spectacular day in quiet solitude! Still mildly achy and worn out (woke too early again), but with absolutely nothing I had to do. And now it's time to reheat leftovers for dinner!

Tonight I plan to add an extra 1 mg of my extended-release melatonin (from 2 to 3 mg) to my usual regimen of treatments to correct sleep dysfunction (which I am really appreciating!) to hopefully end this too-early waking in the morning.

Tell me how you spent your holidays this year!

How have you been feeling?

Do you get worse in late fall/winter?

How do you accommodate your illness and still enjoy holidays & family?

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.

Holiday Tips, Support, and Fun for the Chronically Ill

During this busy season, I am sharing here a wide range of holiday tips, support, and ideas for fun from past posts and past years, to help you through this coming week of Christmas and New Year's celebrations.

[I haven't been posting much here recently because I am still stuck in this awful relapse that began in mid-October. I've spent months with constant flu-like aches, lying on the couch, so my life has been very limited. I've realized that yeast overgrowth/candida is still at the root of this latest relapse, so I am on an extremely strict diet now: pretty much just meat, fish, and seafood, plus some cruciferous vegetables. I'm feeling better, my energy is better (thanks to working all year on normalizing thyroid function), but I still have thrush on my tongue and flu-like aches. Fingers crossed this clears up by Sunday so I can enjoy Christmas with my family!]

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 and within your own limits.

Two years ago, 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!

And here is another round-up from other chronic illness bloggers: Chronically Ill Holiday Gifts and Tips, with some great posts from other bloggers about coping, planning and preparation, gift ideas, and support.

 I posted two Gift Guides here on my own blog this month: Chronic Illness Holiday Gift Guide ( I got some of these for my step-mom who's dealing with chronic pain) and Gifts Created by and for Spoonies. It might be too late to buy gifts for others, but you can put your new gift cards to good use! 

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. And I will add one more holiday movie to that list - I just started watching Last Christmas, and it is just what I needed: a fun, uplifting seasonal romcom. 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 (just a little this year), and a few more gifts to wrap. I'm 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!

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 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.

Chronic Illness Vlog 12-27-22: Holiday Preparations!

Somehow, in the midst of a crazy busy week, I managed to record a few short video clips for a weekly vlog! Fortunately, I was feeling relatively good last week, especially compared to the past few months. I did have one mysterious crash mid-week that turned out to be not-so-mysterious!

You can watch this short vlog on YouTube or below:

How are YOU this week?

And how did you manage the holidays this year?

Let me know in the comments below.

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!

Chronic Illness Vlog & Lake Vacation

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

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

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

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

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

Chronic Illness Vlog: Hectic Week!

I posted another Chronic Illness Vlog on my YouTube channel. This one was recorded last week, and it covers a much too busy week that ended with family staying with us, so you can see how exhausted I was by the end of it!

You can watch the video on YouTube and I will include the video below, too:

This video provides a glimpse into my daily life, the routines that help me, and the ups and downs of living with chronic illness.

Let me know what you think!

Do you like the vlog format?

How was YOUR week?

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

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

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

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

At its heart, it comes down to this:

We are more than our illnesses.

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

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

Let's get to know each other better!

Weekly Inspiration: Celebrate Everything, Big and Small!

I usually write my Weekly Inspiration posts on the weekends, but I didn't have a chance with our oldest son visiting last weekend. Then I realized, they don't have to be weekend posts! Who couldn't use a little inspiration mid-week? Besides, this one is time-sensitive, with some great reasons to celebrate this week, so here it is!

A big part of our family life has always been celebrations. It's the way I was brought up, and the way we began things with our own two sons. Those traditions became even more important after three of us got sick in 2002-2004! Celebrating the small stuff adds joy to your days, breaks up dull routine (especially this time of year), and gives you something to look forward to (see my post, What Are You Looking Forward To?)--all for minimal effort!

I will reprint this entire section from my book, Finding a New Normal: Living Your Best Life with Chronic Illness, below for you to read.

I also made a fun show-and-tell video on Celebrate Everything, Big and Small!, with lots of great ideas and examples, that you can watch at the link. 

Here's the full section from the book, reprinted:

(Excuse some weird formatting, from cutting and pasting from the e-book, and I added some 2022 dates into the text in [ ].)

Celebrate Everything, Big and Small!

Since becoming ill with ME/CFS in 2002, I have been surprised by how life with chronic illness makes me more aware of the small pleasures all around me. Although our lives are often defined by illness-imposed restrictions, we have found ways to add pleasure and meaning to our everyday life, too. One way is to celebrate all kinds of occasions, big and small.

I came by my love of celebration from my mother. When I was a kid, we celebrated everything, and I loved the atmosphere of joy and festivity. My mom was, and still is, a major party animal, so I learned from the best! When I had children, I knew I wanted to do the same thing for them. After chronic illness entered our lives, these celebrations became even more important, a way of injecting fun into our lives, including (especially) on the bad days. Our kids love our celebration traditions, even now that they’re grown!

Of course, we celebrate the big holidays, though we’ve had to scale back since chronic illness hit. We now focus on certain elements of each holiday that are the most important to us. At Christmas, that’s decorating our tree together and getting together with our oldest friends for a cookie-decorating/Grinch-watching party. (To reserve energy for celebrating, we now buy premade cookie dough.)

We also celebrate all kinds of smaller occasions, which can be even more fun and less stressful than celebrating the big holidays. The dead of winter, after the major holiday season is past and before Easter and spring arrive, can be a dark and depressing time. But there are lots of smaller holidays and occasions to celebrate during that time that can add a bit of brightness to an otherwise dreary winter.

One favorite is Superbowl, the first Sunday in February [Feb. 13 this year]. We’re not big football fans, and our days of attending big Superbowl parties are long past, but we still get into the spirit of the occasion. Every year, we have our favorite game-day foods—simple things, like tortilla chips with salsa and guacamole, mini hot dogs rolled in crescent rolls, and my husband’s famous Buffalo chicken (pieces

of chicken breast sautéed in Buffalo wing sauce). While happily munching on our savory treats, we watch the game and the much-anticipated TV ads.

Mardi Gras (the day before Ash Wednesday [March 1 this year]) is considered a major holiday at our house because my husband and I used to live in New Orleans. Before I got sick, we had an annual Mardi Gras party that grew to 50 to 60 people at its height! A few years into my illness, we realized that we didn’t have to completely give up our Mardi Gras festivities; we just had to scale back. Now, we invite a few close friends over, buy some traditional New Orleans’ food (like king cake from a local bakery), and make a couple of favorite dishes, like red beans and rice and jambalaya. Friends bring food, too. We play New Orleans’ music, enjoy the food and company, and sometimes watch the real Mardi Gras parades online.

This season also brings Valentine’s Day (February 14), another celebration we enjoy each year. We hang up heart decorations, give each other cards and treats, and indulge in a simple (dairy-free) chocolate fondue for dessert. Similarly, we observe St. Patricks’ Day (March 17), by wearing green, hanging up sham- rock decorations, and eating our traditional corned beef and cabbage dinner. It doesn’t matter that we aren’t Irish; we still join in the fun and make it a special day. If you like jokes and pranks, April Fool’s Day (April 1) is a fun one to celebrate. One year, I even celebrated Groundhog Day (February 2) by putting little edible groundhogs made from cookies into my sons’ bowls of oatmeal for breakfast!

You don’t need a holiday on the calendar for an excuse to celebrate. Once or twice a year we have Mexican Night. I make our favorite enchiladas, decorate the table with a colorful serape, and mix up a special orange-mango fizzy drink. We used to celebrate the start of summer by blasting “School’s Out for Summer” as my kids got off the bus and then going with friends to play in a local creek. Of course, there is always a party when we visit their grandma (my mom)!

If you are more severely ill, you may be thinking that you can’t celebrate. Here are small ways to make a day special, with the help of friends or family:

Dress for the holiday, even if it’s just colored or themed pajamas and some whimsical socks or earrings.

Hang up simple decorations near your couch or bed. We have different sets of window clings for each holiday, and I still hang up holiday-themed artwork my sons made in school when they were little.

Listen to music associated with the holiday or special occasion, like Christmas carols, New Orleans’ jazz for Mardi Gras, Irish music for St. Patrick’s Day, and oldies but goodies from your younger years on your birthday.

Watch holiday-themed movies, such as A Christmas Story, Valentine’s Day, Mardi Gras (starring Pat Boone), Ghostbusters (perfect for Halloween!), or Finian’s Rainbow. (A surprising number of results come up when you search for “movies with leprechauns in them.”) Of course, you have to watch Groundhog Day on Groundhog Day—at least twice!

Cuddle with your children or grandchildren (or nieces & nephews), and read holiday-themed books together. If that’s too much for you, let them read to you, listen to audio books, or watch short videos together.

Eat holiday-themed foods—the best part of any celebration! Enlist the help of a friend or family member to prepare the dishes or order in appropriate foods: Chinese take-out on Chinese New Year, corned beef on St. Patrick’s Day, Mexican on Cinco de Mayo.

Watch holiday specials and live events on TV or online, likeparades (Thanksgiving, Fourth of July, Mardi Gras), New Year’s Eve at Times Square, the Oscars, It’s the Great Pumpkin, Charlie Brown!, and more. Almost everything is televised or live-streamed now.

Next time you are having a bad day or week or month (or year), find a reason to celebrate and insert some joy into your life!

Weekly Inspiration: Chronic Illness Holiday Tips and Support (and Fun!)

You may have noticed I haven't been writing many blog posts lately--I have been seriously overwhelmed. Besides the usual holiday craziness this time of year, we had a family funeral in Buffalo (an 8-hour drive each way) the week before Thanksgiving, our Thanksgiving trip to Rochester (another 8 hours each way), plus a feature article due to an editor in December, and today, a book signing at a wonderful indie bookstore two hours' away at the beach. That was actually a lot of fun today, and I made some new connections, met other people with chronic illnesses (and sold a few books), but it's just been super busy for me. We did manage to get our tree up last week! So, I've had very little time for blogging.

Then I realized I don't have to write anything new because there are so many wonderful holiday-themed posts out there, written by other bloggers! So, here's a great collection of blog posts, including some excellent advice and helpful tips for managing (and enjoying) the holiday season ... and some laughs and fun, too! These are all from others with chronic illness whose blogs and other writings I enjoy. I hope you do, too!

First, my own article (and a chapter in my book), Managing Family Relationships--Holidays and Beyond. I often find this to be the most challenging aspect of the season for me and the practices I outline in this article have helped me. I hope they help you, too.

 

Toni Bernhard, a good friend of mine who got ME/CFS about the same time that I did, has written three outstanding books on living with chronic illness (check out my reviews in my 5 Inspiring Books post) and writes a regular column, Turning Straw into Gold, about living with chronic illness for Psychology Today. In this column, Surviving the Holidays When You're Chronically Ill, Toni offers several excellent tips for managing the holiday season, including family, gifts, cooking, expectations, and more. As usual, Toni is incredibly insightful and ... well, brilliant! In fact, my husband and I just took one of her tips to heart this weekend, dumped our plans for a huge turkey dinner for Christmas and opted for something much simpler with a lot less work--we are both less stressed now and actually looking forward to the day!

 

Over at Navigating the Storms: Thriving in the Midst of Disabilities blog, she has a helpful holiday post, Let's Use Planning to Make a Beautiful Christmas! She provides step-by-step ideas for planning ahead to manage the season even with limitations, so you and your family can still enjoy the holidays together, with less stress and fatigue.

 

Sheryl at A Chronic Voice blog has put together a comprehensive post, 3 Important Holiday Checklists for Those with Chronic Illness (and Their Supporters) that is chock-full of great advice! Sheryl has checklists for pre-holiday preparation, self-care during the holidays, and what your supporters can do to help, all focused on those of us living with limitations who may struggle during this hectic time of year. This post is loaded with great tips and advice.

 

On the blog My Medical Musings: A Life of Love, Laughter, Faith and Hope, she has a wonderful new holiday post, Have Yourself a Merry Little "Chronic" Christmas. This thoughtful and insightful post includes plenty of practical tips and helpful advice, but it is also kind and supportive, offering emotional support to those of us who probably can't do all that we want to but who still want to enjoy the holidays.

And, now for some fun! Rebecca at Strength and Sunshine blog has a recipe for Peppermint Bark Popcorn ... and it's gluten-free and can be made vegan! It uses only 5 ingredients, takes just 10 minutes to make, and looks delicious. Sounds like the perfect treat for many of us with chronic illness. (Note that many brands of chocolate chips contain dairy. We love Enjoy Life brand of dairy-free chocolate chips.) Mmmm ... we might have to try this one--perfect for a holiday movie night!

 

Finally, with all the holiday stress, you might need a few laughs! Miss Diagnoses: Life with Multiple Ailments has a fun post full of cartoons about If Santa Had Brain Fog. She's a talented cartoonist and has come up with a whole series of funny vignettes about poor Santa dealing with the effects of brain fog as he makes his rounds. Check it out and enjoy some Ho-Ho-Ho's for yourself!

I hope you enjoyed these wonderful blog posts and articles as much as I did!

Enjoy the holiday season!

Weekly Inspiration: Managing the Holidays

We are getting ready for a long road trip to my hometown, Rochester NY, for the first time in 2 1/2 years to spend Thanksgiving with my extended family. I am very excited to see everyone again and be reunited, but I am also worried and anxious about caring for myself away from home, the exhausting effects of all that social interaction, and being with certain family members who refuse to even acknowledge my illness, let alone be supportive. To be honest, my stomach has been in knots the past few days thinking about encountering these people (to be clear, most of my family is kind and supportive). And now I have a new concern, worrying about leaving my father-in-law in his assisted living facility for a few days without us being able to visit, as his dementia continues to worsen.

So ... yay, holidays!

I know I will enjoy our visits, and it will be wonderful to see my family again, but this time of year does present some unique challenges for those of us with chronic illness.

I wrote an article for the ProHealth website, which I reprinted here on the blog (and adapted for my book), Managing Family Relationships During the Holidays ... and Beyond. You can read the full text of the original article at that link.

I just re-read it yet again, and it's a good reminder for me, even after so many years. I think my relapse/worsening since March 2020 has increased my anxiety levels quite a bit, but whatever the cause, I was a lot more accepting and zen back when I first wrote this article!

So, I relearned some hard lessons, and I hope you also get some helpful tips from this article.

Happy Thanksgiving!

Chronic Illness Caregivers

Did you know that every November is National Caregivers Month? I wanted to acknowledge it and share some resources because so many of us living with chronic illness either have family caregivers helpings us or are caregivers ourselves. And some of us (like me!) fall into both categories.

There are some general resources, including tips, community, and more, available for all kinds of caregivers through the Caregiver Action Network. They also include graphics and tags for sharing on social media, to help connect with other caregivers.

For those specifically dealing with ME/CFS, either in themselves or those they care for, there are several excellent resources.

Solve ME has Resources for People with M.E. and Caregivers, including lots of great information on symptoms, post-exertional malaise, applying for disability, finances, finding a doctor, and more.

#ME Action has a whole set of resources specifically focused on caregivers, including a Facebook group for support, a newsletter, and periodic virtual meet-ups for caregivers.

American ME and CFS Society also offers a long list of tips, plus additional resources for caregivers of those with ME/CFS.

I also have resources for caregivers. My book, Finding a New Normal: Living Your Best Life with Chronic Illness, includes chapters on When Your Child Is Chronically Ill and Coming of Age with Chronic Illness, plus the entire book is helpful for caregivers in not only understanding what their loved ones are going through but also practical ideas on offering emotional support.

Ten years ago, I started a Facebook group, Parents of Kids & Teens with ME/CFS and Related Illnesses, which is now being managed by several other wonderful parents. It's a warm and compassionate group of parents from all over the world (1600+ now), but it is also an amazing collection of experience and knowledge, with parents helping parents with treatments, finding doctors, and school issues, as well as offering each other emotional support. To join, just follow the link, click the Join button and answer the questions (adult caregivers of adult "children" are welcome, too).

 

Finally, if like me, you are both a patient and a caregiver (besides my grown son, I am also helping to care for my elderly father-in-law with dementia), check out my video presentation from this year's Parent + Caregiver Summit, Caring for Others When You Need Care Yourself.

And my own personal tip, gleaned from the experience of my husband and I is ... Give yourself a break! Even if you can only manage an hour or two, find someone to lend a hand (family member, friend, or hire someone) so that you can take some much-needed time off. You won't be able to help your loved one if you are exhausted and stressed yourself. I wrote about this on the blog recently in a Weekly Inspiration post: A Much-Needed Respite.

What are YOUR experiences as a caregiver? Are there resources for caregivers that you recommend or have found helpful? Please share your thoughts, tips, and experiences in the comments below.

Happy National Caregivers Month!

Weekly Inspiration: Our Chronic Illness Story

Things have been quiet here at the blog this week because we moved my 96-year-old father-in-law to Assisted Living this week, and it was kind of a rough transition for him. He needs the help but doesn't always realize it due to dementia. Moving day, Wednesday was a very long day for all of us, and then I spent three hours with him on Thursday, helping him get settled and trying to help the staff understand his needs. 

As for me, I was quite pleased that I managed all of that pretty well! Of course, I was wiped out and achy by Wednesday night (so was my husband!), but I bounced back quickly and felt good on Thursday, which felt pretty miraculous. This was the first week that I really felt back to my "normal" baseline, after an 18-month-long relapse. I finally remembered to take a break from my inosine, an immune modulator. I normally take a break every 2-3 months, and it had been 6 months - oops! Immune modulators only keep working effectively if you take a break once in a while because your immune system gets used to them. So, after two weeks off, I started back on inosine Monday, and like magic, my energy returned, my stamina bounced back, and I felt better than I had in months! Inosine has helped both my son and I tremendously, and you can read more about inosine (and the complex dosing) here.

So, things were going well, and then ... a really nasty stomach virus hit me on Friday! It's rare for me to catch any kind of a virus, and this one hit me really hard. Today, on Sunday, I am finally seeing some improvement. My stomach is settling down, I held down a little breakfast, and my fever broke overnight. But I am still very weak and wiped out today (typing this lying down!).

So, I thought I'd share a video I added to my YouTube channel this week, Our Chronic Illness Story. I thought it might be helpful for those who are newer to my blog or who only know me through YouTube to hear about our family's journey with chronic illnesses, including ME/CFS, Lyme, and other tick infections. Here, I tell our story from the beginning, The Before, to the present, including the ups and downs and our successes and victories. You can watch it here or click the link to watch on YouTube:

Please share your story in the comments or let me know if you have any questions. Time for me to put the laptop down and rest!

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.

 

 

Weekly Inspiration: Chronically Ill Holiday Gifts and Tips

I want to put together my own gift guide for the holiday season, but I haven't had time yet (very busy this past week with Thanksgiving and still not quite back to my usual baseline from my 8-month-long crash).

Then I noticed that lots of other chronic illness bloggers have already put together some wonderful gift guides and holiday tips for those with chronic illness, so I thought I'd collect those here and share them with you! Gifts first ...

 

Chronic Illness Gift Ideas

Well, first, of course, I have to mention my own book, Finding a New Normal: Living Your Best Life with Chronic Illness, which includes all kinds of support and advice for daily living, emotional coping, relationships, and, yes ... tips for managing the holidays! 

From now until December 13, you can buy my book on sale for a reduced price: just $9.99 for the paperback and $6.99 for the e-book (available in all popular formats for Kindle, Nook, Apple, Kobo, and more). You can read more about it and find the links to all the different formats here.  

 

My Migraine Life blog has a wonderful new post, 20 Gifts for Migraine Relief: Gift Guide 2020, with some awesome ideas for the migraine sufferers (or others just needing comfort) in your life--or gift ideas for you to share with loved ones! She has some awesome gift ideas here. My son and I both use head ice packs/ice hats and CBD oil, and my other son just gave me a salt lamp for my birthday that I can't wait to try! 

Chronic Mom has a gift guide focused on those with chronic pain, though many items are perfect for anyone dealing with any kind of chronic illness/medical condition. How to Find the Best Christmas Gifts for People with Chronic Pain includes 10 great gift ideas, and some of them come from small business owners with chronic illnesses themselves, so that's a double-win! I've never heard of migraine glasses before, but they sound perfect for my son.

Me, Myself, and Chronic Illness Blog has a unique twist on the gift guide: Low Cost/Low Energy Gift Ideas for Others. If money is tight and energy is low, she's got five great gift ideas that cost very little but will provide a thoughtful gift for your loved one. Some involve some simple, low-energy crafting and some are even simpler than that! Loads of creative ideas here to get you started. These kinds of personal, thoughtful gifts are often the most appreciated.

 

 

The Pain News Network published a list of 12 Holiday Gifts on Life with Chronic Pain. This is a list of books, and my own book is the first one on the list! Others also deal with emotional coping or personal stories, some with specific approaches to pain management, and some to specific conditions that cause chronic pain. I am honored to see my book included with such an outstanding list of books!

Holiday Coping Tips for the Chronically Ill

Besides my own book, there are a couple of excellent blog posts that provide tips on managing the holiday season, a significant challenge for all of us with chronic illnesses:

 

Navigating the Storms: Thriving in the Midst of Invisible Disabilities has a new blog post, Advent Begins, that answers the question, "How can we prepare for Christmas when we deal with so many limitations daily?" She includes some excellent, supportive tips that we can all benefit from, plus a few more resources to help.

 

My Medical Musings offers a focus on enjoying the season in our own way in Decking the Halls and Creating Comfort and Joy at Christmas. She talks about her own experiences and tips on creating new or revised traditions that fit within our restricted lives. It's a lovely post with some great, creative ideas for celebrating the season in our own way.

 

I hope these excellent blog posts help YOU to get ready for your best holiday season ever!

Weekly Inspiration: Busting the "Everything Happens for a Reason" Myth

I've already written here about Kate C. Bowler and her magnificent podcast, Everything Happens, in my post from a few weeks ago, Weekly Inspiration: Two Inspiring Podcasts. My love affair with Kate's moving, funny, inspiring interviews continues, and I have been listening to both her new episodes and her backlist. So, scrolling through the TED Talk site today, it occurred to me to check if she'd ever given a TED Talk. She had, at TEDMed 2018, and wow, it's a powerful talk that speaks directly to those of us with chronic illness.

As with her podcast--and book-- her TED Talk is titled, "Everything Happens For a Reason"--and other lies I've loved. In it, Kate explains how she had spent years studying the "prosperity gospel," the basic concept that good things happen to good people, and if you just live a good life, you will be rewarded. Then she was diagnosed with Stage 4 cancer at the age of 35. She tells the story, with jokes and also with tears streaming down her face at times, much better than I can:

 

 

 

A couple of her points really hit home for me. She talks about this concept of good people being rewarded, which implies the opposite: if something horrible happens to you, you must have somehow deserved it. She describes how hundreds of people (through her writing) have tried to convince her of this (what a horrible thing to say to someone with cancer!). She talks about the underlying fear that encourages people to think this way, which is basically "if it happened to YOU, then it could happen to me." In this way, people try to find a reason for your tragedy, a way to explain why the same thing could never happen to them. But, as she says in the opening to her podcast each week (see my earlier post--the full quote is so powerful), "Hey, there are some things you can fix and some thing you can't, and it's OK that life isn't always better ..."

I have experienced this first-hand with people in my life who refuse to accept the severity or permanence of my illness. One person very close to me even went around telling everyone else that my illness was all in my head in my early years of ME/CFS. I figured out long ago that this fear Kate describes was likely at the root of all that, but it still hurts tremendously to be minimized or to have my suffering ignored by people I love. That's why it feels so powerful and encouraging to listen to Kate's talk and podcast and to feel like she is talking directly to me.

On the positive side, she also discusses an unexpected benefit of her experiences with cancer (hers is treatable but not yet curable). In talking of discovering this hidden world of illness (see my own article, The Hidden World of Invisible Suffering), she says, "My own suffering began to feel like it had revealed to me the suffering of others." She explains that this led to more connection in life. 

I agree wholeheartedly! I've often written about exactly that (like in the article linked above): that one silver lining in a life of chronic illness is reaching out and connecting with others just like you. Finding others--online or in real life--widens your world and not only brings you comfort and companionship but allows you to offer the same to others, which can be incredibly rewarding. I wrote about that topic here, including how to find others.

She concludes with a statement I fully agree with: "Life is so beautiful and life is so hard."

Her talk is less than 15 minutes long, and is so powerful and touching. I hope it inspires YOU as it inspired me.