Are There Warning Signs Before an "Abrupt" Onset of ME/CFS?

Like many people with ME/CFS, I can tell you the exact day that my illness began: March 1, 2002. Multiple studies have indicated that 75-80% of those with ME/CFS have an abrupt onset like that, often triggered by an infection (over a dozen infectious triggers have been identified) or sometimes by a vaccine (in someone genetically predisposed), trauma like a car accident, or even chemotherapy. But are there earlier signs of impending immune dysfunction and illness, even in obviously abrupt onsets like mine that forever divide our lives into Before and After?  

BEFORE: Hiking up a mountain while carrying our son!

 

My Abrupt Onset of ME/CFS:

Before March 1, 2002, I lived a normal, active life. We had two young sons who kept us busy, and in 2000, I had left my career temporarily (or so I thought!) just to slow our lives down a bit and so I could spend more time with our boys. My life at that time without outside work was pretty low-stress, and I was very content. March 1 was a typically busy Saturday: I did an exercise class at the Y while our boys took their swimming classes, we bought groceries and came home to clean the house, and that evening, we had friends over who had 3 kids, and I made dinner and enjoyed their company. By bedtime, though, something felt very wrong. I had a terrible sore throat that I described as "like I swallowed barbed wire." I woke up the next morning badly crashed, in the world of ME/CFS though I wouldn't know that for another year. My life from then on was never "normal" again.

 

Were There Earlier Signs of Dysfunction? 

When we saw our first ME/CFS specialist, the great (now retired) Dr. David Bell, he mentioned to me that most people like me who could point to a specific start date of ME/CFS actually had earlier signs and symptoms. At the time, you don't realize what they signify, but in hindsight, many people can look back and see some patterns that would prophecy ME/CFS, if we knew what to look for. He asked me to think back and consider whether I had any early signs.

When prompted, I realized that I could think of two instances where my immune system was clearly over-reacting, my first encounters with weird reactions to normal things! 

In the 9th month of my second pregnancy, in 1997, I got a horrible rash all over my pregnant belly that itched like crazy. My OB/GYN eventually had to give me prednisone ... and it took two rounds of steroids to finally clear it up. She explained to me that it was an autoimmune reaction, my body reacting to the baby as if it were a foreign body it needed to fight and that, while it was not unheard of, it was not a common reaction.

About two years later, in 2000, I got some poison ivy on my forearms while working in our yard. It was isolated to my lower arms and wasn't an especially bad case to begin with, but it wouldn't go away. I spent weeks (very hot summer weeks) soaking my arms in ice baths and covering them with cortisone cream and calamine lotion, to no avail. Finally, once again, two rounds of prednisone were required before the rash subsided.

Later, when I thought about it some more, I also remembered some "weird viruses" I used to get after college, when I was working in my first job, in New Orleans, starting in 1987. About 2-3 times a year, I would suddenly get very sick, but my only symptoms were the most severe sore throat I'd ever felt and complete exhaustion so extreme I couldn't do anything at all. Sound familiar? The first time it happened, I went right to the doctor for a strep test, but it was negative. I stayed in bed and did nothing but sleep and eat for 3-5 days, and then I felt fine again. This happened several times a year and was never accompanied by congestion, cough, fever, or other typical viral symptoms. It often occurred after a very busy period, like back-to-back business trips. I assumed it was some sort of virus, but the exact same pattern repeated over and over.

Just this weekend, I was looking back at an old journal from 2001, just for fun. The first few entries in January were pretty normal, describing our active daily lives with our young sons. But this one made me gasp out loud:

"Fri, Jan. 5 - 

Tired, Exhausted. Wiped out. Achy. Struggled to find some energy all day. Had fun in the snow with the boys but now even more tired."

What?? That sounds like ME/CFS, doesn't it? Healthy people don't get flu-like aches without the flu, even if they overdo. I looked back to the day before:

"Thur, Jan. 4 - 

Woke up sore and stiff [the previous day was a "normal" one with no unusual activity] and Ken says I was talking in my sleep. I just felt so tired all day - whew. "

Then I wrote this on the following Sunday:

"Sun, Jan. 7 - 

I took a step class for the first time yesterday and really overdid it! I had a lot of trouble sleeping last night with lots of bizarre dreams. I felt horrible this morning and ended up spending most of the morning tossing and turning in bed."

Exercise intolerance, anyone?

The following weeks seem fairly normal. I do often write that I'm tired, but I was the mom of two active boys also trying to take care of our house and launch a writing career. But I do remember my husband commenting around that time that it seemed like I was always saying I was tired lately. 

In hindsight, it seems like all of this was leading up to that day on March 1, 2002, when a switch was flipped, and my immune system never returned to normal, as it had in the past. I've always thought that the trigger for my ME/CFS was allergy shots (I had just gotten up to my maintenance dose that week), but looking back, it seems like my body was primed for that trigger to finally bring on ME/CFS permanently.

How about you?

 

When you look back at the time before your own "abrupt onset," were there early signs? 

Let me know in the comments below.

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

Happy 22nd Illiversary to Me!

Twenty-two years ago today, on March 2, 2002, I woke with the worst sore throat of my life, wracked with flu-like aches, and feeling completely exhausted. I figured I had a flu or some other virus, but we all know how that story ends!

You can read a written summary of our years of illness at the Our Story tab (or in Chapter 1 of my book) or the timeline version of our history that I wrote on my 20th illiversary.

On my 16th Illiversary, in 2018, I wrote about how the anniversary date has affected me over the years, at various points in time, including the treatments that helped me to improve.

Most interesting to me now, 22 years into this journey, is that often the date passes without me really noticing! I only remembered this year because someone else was writing about an illness anniversary elsewhere online this week. In those early years, it was devastating to think of how many years I'd been sick, since I'd left my old life behind.

These days, after 22 years, as the title of my book, Finding a New Normal, indicates, this is just normal life now. The date can be more difficult for me when I am badly relapsed (as I was for periods of the past three years), but this year, now that I am feeling better than I have in years, I am grateful that I am able to manage this well. This year, in particular, after those last few very difficult years, I am hugely grateful that I have come back to life in the past two months and am able to see my friends, go out, and be active again.

So, Happy Illiversary to Me!
(I certainly won't be eating any cake on this strict no-sugar diet!)

How many years have you been sick?

How does YOUR illness anniversary affect you?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Excerpts from My Book on Living with Chronic Illness

I am home briefly in between trips - three trips in 10 days' time! It's a busy month with a lot of family stuff, so I thought I would share some videos here today.

Since I started my YouTube channel in February 2021, I have made quite a few videos based on chapters from my book, Finding a New Normal: Living Your Best Life with Chronic Illness (available everywhere, in print and e-book, and more info on the book at that link). This book is meant for anyone living with any kind of chronic medical condition, with a focus on emotional coping, daily living, healthy relationships, and figuring out what your best life is, within your own restrictions and limitations.

I recently made a couple of brief videos (YouTube Shorts, under 1 minute each), with a quote from the beginning of two chapters:

Who Do You Tell and What Do You Say? - all about deciding what to reveal and to whom about your medical condition.

The Hidden World of Invisible Suffering - how chronic illness showed me a hidden world with lots of people facing challenges others don't see.

And these are longer (12-25 min) videos, based on full chapters from my book:

Get Out! Nature Improves Health - based on the chapter, The Restorative Power of Nature, includes some photos and videos of nature, plus tips on how to enjoy and get the benefits of nature, no matter what your limitations.

A Plan B Day - a useful concept with specific steps to help you prioritize, reduce stress, and listen to your body.

You're Right Where You Need to Be - how techniques like acceptance, giving in, and living in the present can help you to live your best life with chronic illness.

Finding Joy in Every Day - 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.

What Are You Looking Forward To? - one simple tip I learned from a wonderful psychologist that can help when you are feeling stuck in a rut.

Celebrate Everything, Big and Small - when you celebrate the small stuff - with minimal effort! - you add joy to your life and give yourself and your family something to look forward to. It's fun! 

So, I hope that will provide some useful information to you while I'm away.

What tips and strategies help YOU live with chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

Throwback Thursday: 17 Years of Blogging!

Seventeen years ago today, two wonderful things happened: my amazing nephew was born and I started this chronic illness blog! Back then, ME/CFS was often known as CFIDS (chronic fatigue immune dysfunction syndrome), in an effort by patients, experts, and advocates to bring some legitimacy to our much-maligned disease and more accuracy to its name.

You can read my very first blog post, Our Approach to Living with Chronic Illness, at the link. It's interesting to me to see that my overall philosophies have not changed: a balance of acceptance and hope, finding small joys in everyday life, staying within our limits, plus finding treatments that help. You can even see the origin of the title of my book, Finding a New Normal: Living Your Best Life with Chronic Illness in this post!

I started the blog as a sort of online journal (you can also see the precursor to this blog on my original LiveJournal account!). I didn't expect much, but I wanted to share our story and hopefully connect with a few other patients. I was quickly stunned by the outpouring of support from patients around the world who shared so many of our experiences in their own lives. 

It was the start of what turned into a huge effort to provide support to others (while also supporting myself and my family) that now includes multiple support groups, both locally and globally, online; a YouTube channel; and interaction with others patients on social media platforms and beyond.

All of this has greatly improved my life in so many ways. This illness can be so lonely and isolating, and it's been magnificent to connect with so many people all over the world.

Where were YOU 17 years ago today?

Counting Steps: Another Way to Measure My Limits

I finally have some cautiously optimistic news to report, after three long months of post-COVID/worsened ME/CFS hell: I've had some good days--and even good streaks of days--in the past couple of weeks! Of course, I was crashed the past two days, but I was having a really good stretch before that. I'll talk more about recovery from COVID and long-COVID in my next post; I want to be sure of what is working and why.

In the meantime, I thought I'd share a new-to-me approach I've been using as another way to quantify my limits and know when I am doing too much. 

 

Monitoring Heart Rate

In the midst of this post-COVID relapse that worsened my ME/CFS the past few months, I first turned once again to my trusty heart rate monitor. Typically, I do well enough with treatments that I know I am within my limits most of the time, and I only wear it when I am doing something particularly active, like taking a walk or going shopping. But with feeling crappy most of the time and crashing badly multiple times each week, I strapped it on and wore it continuously for a week or so, anytime I was awake. It confirmed what I suspected: my heart rate was higher than normal, and simple activities I could normally tolerate fine were now putting me over my limit and causing a post-exertional crash. Just being aware of that helped me to decrease my activity level, stay within my limits more, and reduce those crashes.

You can learn more about how to use a heart rate monitor to prevent post-exertional crashes in my blog post. 

Counting Steps

About that same time, I learned about another way to measure my activity level. Now, don't laugh, but I only just got my first smart phone in summer 2020, an iPhone, so I am still learning about all the cool stuff that comes with it. I was reading an article (in AARP Magazine!) about what you can do with a smart phone, and it explained that iPhones come with a pedometer app in the Health button (a white square with a red heart in it on the home screen).

So, I began carrying my phone in my pocket with me all day long (I was normally leaving it on the kitchen desk while I was at home). I found that tracking my steps gave me another way to quantify my exertion level each day.

Of course, as with everything else (including heart rate monitors), we with ME/CFS and long-COVID use these tools differently than "normal," healthy people. As you know from TV, magazines, newspapers, and the internet, there are all kinds of encouragements to increase your steps, to aim for 5000 or 10,000 steps a day to improve your health! Instead, I use it to monitor and stay below what I have figured out is too much for me.

First, I just carried it in my pocket every day and checked it the next morning. How many steps did I take the day before? Did I crash or do I feel OK today? I quickly came to find that during this worsened period, I could handle 2000-2500 steps a day, maybe even 3000, if I kept my HR below its limits and felt good. Approaching 4000 steps a day, though, was my danger zone; I'd almost certainly crash the next day. I was surprised to find that even on a bad crash day, I still often took 1500 steps, just inside my house (we have a large house with a lot of stairs).

Again, I know I have been in worse shape than usual since I had COVID in January, so I don't know what my "normal" limits are. But having an idea of my current limits gave me another tool to try to stay within them.

The Health app on the iPhone also graphs your daily step data for you.

Here are my steps so far today (I took a walk this morning, clearly shown by the spike):

 

My steps this past week--you can easily see I was crashed yesterday!

My steps for the past month--Those days over 4000 almost always correspond with a resulting crash the next day:

And, even though I only started carrying the phone in my pocket in the past two months, I still found the last year's data interesting (the phone was usually in my purse or pocket anytime I left the house):

 

The monthly averages clearly show that I was doing quite well last May, before I got my two COVID vaccines, which set me back a bit. Then, my activity level gradually increased from July through December, when my 22-month relapse finally ended. You can very clearly see the month I had COVID in January--I barely moved from the couch or bed! And since then (and since I began carrying the phone all day), you can see a gradual increase in my activity level, which corresponds to a gradual improvement in how I'm feeling. Cool, right?

Using my phone as a step counter is just another tool to help me quantify and measure my limits so I can better stay within them and prevent post-exertional crashes. I actually have a beautiful new Apple Watch that my husband gave me for Christmas that should make this even easier (as well as monitoring my heart rate, which was its primary purpose), but I still need to figure out how to set it up and use it! Maybe I can manage that now that I'm beginning to feel better.

Do you count steps or monitor your heart rate? 

How else do you use technology/your devices to help measure your limits or otherwise help with your ME/CFS or long-COVID? 

Let me know since I now have a new device with lots of cool features to learn!

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: A Day in My Life

I finally finished editing and uploaded my own Day in the Life with Chronic Illness video, showing you a glimpse into my life with ME/CFS, Lyme disease, and OI (POTS and NMH).

As I mentioned in a recent Weekly Inspiration post, I enjoy watching chronic illness "slice of life" videos on YouTube. These are the videos that provide a glimpse into someone else's life with chronic illness. Some are Day in the Life videos, capturing a single day, and others, like the Chronically Jenni Weekly Vlogs I highlighted in that earlier post, cover more time.

What I find interesting and inspirational about these kinds of videos is their honesty and authenticity. As opposed to what you normally find online and on social media, these chronic illness videos almost always show the unvarnished truth, in this case about what life with chronic illness is like: the good, the bad, and the ugly. I find it comforting to see someone else do something small, like meet a friend for lunch or go to a store, and then have to lie on the couch afterward--I feel bad for them, but it means I'm not alone! There's comfort in community, in knowing that others face similar challenges as you do ... and are managing their own version of life and happiness.

So, for all of these reasons, I recorded my own Day in the Life with Chronic Illness video. You can watch it on YouTube at the link (and be sure to "Like" and leave a comment, if you want), and check out the Notes below the video on YouTube. And I will also embed the video here:

As I explain in the introduction to this video, I recorded it on a day when my husband was out of town (a rarity these days!) but otherwise, it was a pretty typical day for me. I wasn't crashed, and I was able to manage small bits of activity, with periods of rest in between. I tried to include everything in my daily routine, to give you a glimpse into my life with ME/CFS, Lyme, and OI (POTS and NMH) and the many kinds of self-care that help me. Since I enjoy the honesty and authenticity of others' videos, I tried to give you the same thing here ( I even started recording when I first woke up!).

Finally, as I mention in the video and in the notes below it, I am only able to manage the level of activity and functioning shown in the video because of the treatments I have found over the past 19 years that have helped both me and my son to feel better, tolerate more exertion, normalize our immune systems, prevent and lessen crashes (flare-ups), and overall improve our quality of life. For more information on Effective Treatments for ME/CFS (most of which are readily available worldwide and inexpensive), click on that link to the page here on my blog and/or check out the Notes below the video on YouTube.

 

And I would love to hear about YOUR life! What is similar or different than mine? What things help you to manage life with chronic illness?

Tell me about your own daily life in the comments below.

Weekly Inspiration: A Much-Needed Respite

When Life Gets to Be Too Much

My husband and I have been unable to travel--or really do much of anything on our own--for almost two years now. Yes, there's the pandemic and my chronic illnesses, but our biggest restriction lately is caring for my 96-year-old father-in-law. He needs help every day, and we weren't going to move him to Assisted Living when they were all locked-down and we wouldn't have been able to see him. We are in the process of finding a place for him now, but for the last 18 months or so, my husband been driving the 20 minutes to his apartment in Independent Living at least once a day and twice on weekends, plus we always spend time with him on weekends. We're happy to do it and glad we can spend time with him, but it is a lot of stress with no downtime, especially as his needs have greatly increased this past year. 

I've tried to schedule some short getaways nearby, within 30 minutes of his place, but it's much too hot for camping right now, and my husband's work schedule's been full, too (we can only go on weekdays when an aide is available to help). 

In addition, with all this time spent caring for him, we don't have enough time or energy to properly take care of our house, our yard, and everything else in life! 

 

Enjoying a Respite

So, a few weeks ago, with both of us feeling stressed, overwhelmed, and seriously depleted, I declared we were going to have an 18-hour respite! 

I explained that, from 5 pm Saturday when he got back from his dad's until 11 am Sunday when he'd need to head over there again, we were going to just relax, enjoy ourselves, and not try to accomplish anything or be productive. He brought takeout dinner home, we watched a movie together, spent some time reading, and got up in the morning in the same frame of mind. After a simple breakfast, we treated ourselves to coffee (which I rarely drink) and chocolate croissants (you must try Trader Joe's ones in the freezer - bake them yourself and it's like you're in a fancy coffee shop!), while we watched a couple of episodes of Lakefront Bargain Hunt, our go-to guilty pleasure! We spent time relaxing out on our screened porch, which we normally don't have time to enjoy.

Relaxing on the screened porch

It worked wonderfully and allowed us to recharge, and we did the same this past 18 hours (my husband is out now picking up his dad to bring him here for lunch).

The key here is a change in mental attitude: act like you're on vacation, ignore the to-do lists and piles and mess everywhere, and focus on pleasant, relaxing things. Get takeout or stick with simple meals, with minimal cooking and dishes. Let the laundry, cleaning, phone calls, and bills wait.

It's a simple concept, but it is really helping us! Friday, we were both exhausted, overwhelmed, and feeling depressed. But now, the word respite is like a code word for us that helps us switch to off-duty, fun mode and just relax for a bit; even just an 18-hour break helps! Without this conscious switch, we'd either keep trying to get stuff done (me putting my laptop away is a crucial step!) or feel guilty for all the things we should be doing. Taking a respite allows us to turn off our brains for a bit.

This can also work very well if you have kids at home (whether healthy or sick). They will love the switch to vacation mode and get into the spirit! When our sons were young, and three of the four of us were chronically ill at the same time, we had a tradition (thought up on the spur of the moment one difficult February) of packing up the car for a weekend at the beach in February or March, just when the long winter of viruses, crashes, and missed schoolwork felt like more than we could take anymore. We'd just relax in our hotel room, play cards, eat at our favorite restaurants, take a short walk on the beach (bundled up!), and sit on the floor of the awesome local bookstore, browsing in our favorite sections. It wasn't much (and the beach in the off-season is cheap), but that change in attitude helped us all so much!

My sons and I on a deserted beach, enjoying a getaway!

Even if you can't physically get away, like us right now, you can still give yourself a much-needed respite today, right at home. Try it!

 

Take a Break!

For more ideas on ways to give yourself a break from routine, even when you can't leave the house, check out my recent video, Take a Break!

 

 

Are YOU in need of a respite??

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: Winter Boosts

It's that time of year again - the cold, dark days of winter (at least for those us us in the northern hemisphere). Short days, less sunshine, fewer times when we can get outdoors (especially for those who can't exercise), and even more isolation. In addition, many people with ME/CFS experience a downturn physically in the winter months (here's one reason why and how to prevent/treat that). 

Taken all together, that can make for some rough days when you are chronically ill. Below, I have collected some great advice from other bloggers (plus a bit from myself) on accepting where you are, finding joy in small moments, coping, and lifting your spirits.

 

From My Book

While all of my book, Finding a New Normal: Living Your Best Life with Chronic Illness, is about emotional coping and improving your life, a couple of the chapters feel extra-relevant this time of year when you're feeling down or gloomy. Here, I will link to those, where I previously reprinted them on the blog.

My chapter, You're Right Where You Need to Be, was inspired by a friend's wonderful memoir. It's all about accepting where you are right now, switching from fighting the situation to giving in (but not giving up), and feeling more at peace with yourself and your current situation. You can read my previous blog post about it and the full text of the chapter at that link.

Once you have accepted where you are now, you can focus your attention on Finding Joy in Every Day. This means living in the present, being grateful, and finding small moments of joy in every day. This change of attitude can make a huge difference in how you feel about your illness, your current situation, and your life.

 

Banishing the Winter Blues

Pippa from The Life of Pippa blog wrote a wonderful post recently on Banishing the Winter Blues: Chronic Illness-Friendly Recommendations. She talks about how typical advice heard in the mainstream media and on social media at this time of year just doesn't work for us, and then she offers three great tips for helping yourself through the winter months.

 

7 Reminders for Those Bad Days to Keep You Going

One of my favorite chronic illness blogs is from Sheryl at A Chronic Voice. Her latest blog post is warm and supportive, like wrapping up in a super-soft, warm blanket. Her 7 Reminders for Those Bad Days to Keep You Going are all kind, gentle lessons that we probably learned at some point but need to be reminded of. Read it now, and bookmark it for the next time you are feeling crummy and having an especially rough day.

 

Loving "Moments" of my Chronic Illness Life

Sam of My Medical Musings blog has a thoughtful post about living her life in moments, that add up to days, weeks, and months. She explains why she feels content with her life, in spite of multiple serious medical conditions and disability. As in my own essay about finding joy in every day, she writes about living in the present and enjoying small moments, even on the worst days.

 

Stressed Out? Can We Manage and Overcome It?

Carole of Navigating the Storms has a helpful new post up, Stressed Out? Can We Manage and Overcome It? Here, she offers some great tips for dealing with stress, whatever its cause, which can be even more challenging for those of us with chronic illness.

 

So, there you have it - a collection of inspiration and wisdom from some of my favorite bloggers. You can enjoy the posts I linked to and also maybe find a new blog or two to follow (in addition to this one, of course!)

How about you? How do YOU deal with the winter doldrums? Please share your own tips and advice in the comments.

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.

Weekly Inspiration: From Other Chronic Illness Bloggers

I've been seeing so many inspirational posts from other chronic illness bloggers this week that I wanted to share them. There is a wealth of experience and knowledge and understanding here for all of us...and maybe you'll discover a new blog that you like!

True Friends in Unexpected Places
If you have lost old friends due to your chronic illness (as most of us do, sadly) or feel a lack of meaningful connections in your life, check out the excellent post at My Medical Musings about friendship and creating new connections in your life. Like the author, I, too, have started discussion forums and support groups in order to help others but have also gained new friendships and support myself. It's an inspiring post.

And if you need help in exactly HOW to find others in similar situations that you can connect with, both locally and online, check out my own article on ProHealth: Birds of a Feather: The Joys of Community, with the story of how I started a local support group and how you can find others to connect with, online and in real life.

The Five Stages of Grieving Your Diagnosis
For those still in the early days of chronic illness or who have maybe just recently received a diagnosis, Teena over at Whoa Mumma has a great post on the stages of grief, as they apply to chronic illness. Take a look at her wonderful explanation of the natural process of grief in those with chronic illness. One thing I would like to add to her beautifully written post is that these stages don't always happen in this order, and they can recur at unexpected times, even years after you are well into the Acceptance stage. As an example, I wrote this post on Mourning Losses a full 10 years after I first became ill and many years into my settling into a "new normal" and fully accepting my new life of restrictions. That's just the way grief works, and chronic illness is no exception: everyone's path is different, and a stage you finished with long ago - like anger or depression - can still take you by surprise years later. It's OK, it's normal, and you will return to your usual place of acceptance when you are ready.

Chronic Illness and Grief
A Journey Through the Fog, an ME/CFS blogger, has also written about grief this week, in her post on Chronic Illness and Grief. She writes of her own personal journey toward acceptance, including how memories and photos of "the old days" can sometimes be depressing, the emotions she's experienced as part of the grieving process, and the particular grief in losing control over your life and losing income when you can no longer work. A few years ago, I also wrote a Weekly Inspiration post about Acceptance, with some quotes that I found inspiring.

Asking for Help (and Why Everyone Needs to Learn This Important Life Skill)
Finally, A Chronic Voice (one of my favorite chronic illness blogs) has written a very important post about Asking for Help, and I agree with her that we all need to learn this skill...and get over our hang-ups about it. This was SO hard for me at the beginning - and still is to some degree - because I was used to being independent and hated the loss of control and needing help. Luckily, I had some amazing friends who didn't wait for me to ask but just helped me. I have learned over the years that most friends and family DO want to help you, but they don't know what to do and feel uncomfortable asking. That's why this life skill - asking for help - is so important. Check out A Chronic Voice's blog post on this topic, with plenty of inspiration and practical tips, too.

I hope you enjoyed this journey around the Blogosphere today! There are so many wonderful chronic illness bloggers out there, sharing their insights and experience. It is truly inspiring. For more links to chronic illness blog posts, check out the Chronic Illness Bloggers page on Facebook.

And please share your own favorite inspirational links in the comments section!

Weekly Inspiration: Coming of Age with Chronic Illness

Back in July, my article, Coming of Age with Chronic Illness, was published on the ProHealth website (at the link). I have reprinted its text in full below.

The article was based in part on our own experiences. Our sons both became ill with ME/CFS in late summer 2004, at ages 6 and 10. The younger one had milder ME/CFS for about 10 years and then recovered completely at 16. Our older son also got Lyme disease plus two other tick infections - which went undiagnosed for over 3 years - at age 12, so his journey has been more difficult. He is now 24 years old and just graduated from college. So, both of our sons came of age with chronic illness, though the younger one was far less affected by it.

I also reached out to an amazing community to get input for the article - our Facebook group, Parents of Kids/Teens/Young Adults with ME/CFS and Related Illnesses. They came up with some wonderful advice and tips that I incorporated into the article - I wish I had though of some of this stuff 10 years ago!

So, if you have kids who are chronically ill, this article is a must-read, with practical advice for helping them to mature and develop, even if they can't leave the house. And if you do have sick kids, you are welcome to join our support group mentioned above. It is solely for parents of sick kids (I use the term "kids" loosely - some of our members' kids are now adults but still dependent or semi-dependent). Just click the Join button for our group and then answer the questions that pop up so we can add you quickly. In the meantime, here's the article:

Coming of Age with Chronic Illness

When a child or teen becomes ill with ME/CFS, fibromyalgia, or tick infections, he or she faces many unique challenges in meeting typical growing-up milestones. My oldest son, now 23, has had ME/CFS since age 10 and three tick infections since age 12, so his illnesses have been an integral part of his coming of age. I have watched him struggle with things that come easy to his peers and fall behind in various ways, all while trying his best to live his life with these devastating conditions.

I asked the members of our Parents’ support group about the biggest challenges young people with chronic illness face as they grow and mature, and they came up with some great ideas to help overcome those challenges:

Isolation
One of the biggest challenges of chronic illness at any age, staying connected is especially important during the formative years. Sick young people are often isolated from friends and spend much of their time with their parents. Some tips for staying connected with peers:

·      Find friends online. Join groups for young people suffering with similar illnesses. Look for others on social media who share your interests. Play your favorite games online.

·      Attend school as much as possible. By law, schools must provide an equivalent education in the “least restrictive environment.” Use an educational advocate to help your young person get what he or she needs: home education plus as much time with peers as is physically possible. One teen could only manage to go to school for lunch and art class, so her accommodations plan allowed that. My son took some classes at home and went to others in person when he was able to.

·      Stay in touch with old friends. Young people can text, message, or talk to friends. My son has spent many days on the couch Snapchatting with friends! Make a standing date with close friends. One girl had to switch schools, but her best friend still came to spend time with her every Friday. We hosted movie nights for my son and his friends – low-key but lots of laughs.

·      Siblings and cousins count, too! Connecting with siblings, cousins, and other family members can help. Don’t limit cousin time just to holidays – our sons have ongoing group chats with their cousins year-round.

Keeping Up with Peers

It is painful for a sick young person to watch his or her classmates (and younger siblings) achieve normal milestones – everything from learning to drive to having a girlfriend or boyfriend – while they feel left behind. This gets even tougher as they get older and friends leave to live on their own, start full-time jobs, and get married.

·      Take time to grieve. Let your young adults grieve for what they are missing. Acknowledge their feelings rather than dismissing them.

·      Work on meeting milestones in their own way. Maybe your son will need lots of 15-minute sessions in the car with mom or dad instead of driver's ed. There are lots of options for keeping up in school, including part-time or full-time homebound instruction and online classes, plus having the school waive all but the most necessary graduation requirements. Even homebound kids can learn how to pay bills online, write checks, and other adult skills.

Having a Purpose

When you are stuck at home, it is hard to feel engaged with the world around you. Try to focus on something outside yourself and find your own unique talents that fit within your limitations. Here are some ideas from other sick young people:

·      Get a pet. Having a pet accomplishes several goals, including caring for someone else, having a purpose, and learning life skills. One girl got a puppy and is helping her parents train him as a service animal.

·      Express yourself artistically. Sick kids can focus on developing talents and expressing themselves, with music, art, or graphic design. Some chronically ill young people post their creations online or even sell them.

·      Find an online audience. One girl started her own YouTube channel at age 12 and has grown it to over 80 thousand subscribers. Take advantage of your own interests in make-up, video games, fashion, or other hobbies and find your audience through social media.

Earning Your Own Money

That first job is a big milestone, an important step toward adulthood plus the exhilarating freedom of earning your own money. There are ways for sick kids to start their own businesses, even from bed!

·      Work as mom or dad's assistant. Teach your young person how to order supplements online, refill medications, pay bills, and do online research and then pay him or her to do some of these tasks. This could lead to a real job as an Electronic Assistant, a hot new field.

·      Turn creative hobbies into cash. Help find markets online for your young person's creations, through eBay, Etsy, and other websites. Search for "turn art into products" for loads of ways to make money from personal creations.

·      Start a small business. The opportunities to make money from home are endless. You can sell products or services, create online courses, and more. Check out the podcast, website, and book Side Hustle School for hundreds of ideas and tips to get started.

·      Apply for disability. Young people who are disabled and unable to earn their own money can apply for disability. One mom said, "It’s not a lot (of money), but giving her some financial independence has been really positive. In a world where she has so little control...this is a bit."

Delayed Development

Two developmental issues to consider: emotional development that comes from interacting with others and the physical development that healthy teens experience. Both can be seriously impacted by chronic illness. Some tips to consider:

·      Socialize as much as possible. See the tips above. Both online and face-to-face socializing will help with emotional development.

·      Be patient and recognize delayed development. Try not to get annoyed when your normally compliant 20-something begins to argue and rebel – these are good signs! He or she was probably too sick as a teen to go through the normal rebellious phase, so it's coming later.

·      See a doctor. These illnesses are known to cause endocrine (i.e. hormone) dysfunction, which sometimes affects development, including moods, growth, and libido. See an endocrinologist to check for primary endocrine disorders that can be treated, like thyroid dysfunction or low growth hormone. Also watch for signs of self-hatred or body dysmorphia – not unusual when you feel like your body is betraying you – that would indicate the need for professional counseling. 

Growing up while struggling with a chronic illness is a double-whammy, but there are things that you and your kids can do to help with development and maturity. In a life that often feels out of control, taking these small steps toward adulthood can make a big difference.