Celebrating 20 Years of Blogging!

The Beginning of the Blog 

I started this blog on February 16, 2006--20 years ago this week! Wow, that's hard to believe. In a couple of weeks, on March 1, I will hit the 24th anniversary of becoming ill. I actually started an "online journal" on Live Journal even earlier, in April 2003, just a year after I first got sick, but I don't think anyone ever read that!

My family in 2006 - I was taller than my sons!

My first blog post here was Our Approach to Living with Chronic Illness, with a little background about us and the way we live. It's interesting to me that way back then, I was referring to our "new normal" (the title I gave my book 14 years later!), to finding joy in every day, and balancing hope and acceptance--all topics I write about here on the blog often.

Ironically, my second post, Is It the Weather?, was about how the weather can affect my physical symptoms and condition and how frustrating that is since I can't do anything about it. I am currently in the midst of a weeks-long relapse that I am certain is due, at least in part, to this nonstop cold, gloomy, overcast winter we're enduring! Last Friday, I suddenly felt good again and my aches had disappeared (just as I describe in this 20-year-old post). As I wondered aloud what caused the sudden shift, my husband pointed to the blue sky. It's still just as discouraging! 

My very first Weekly Inspiration post (a feature I kept up from 2006 to 2024), Weekly Inspiration: The Power of Hope was about a book that is still very important to me, The Anatomy of Hope by Dr. Jerome Groopman, MD. In fact, when my husband was recently diagnosed with cancer, I pulled the book off my shelf and gave it to him to read. 

 

Top Blog Posts

I'm not sure whether the analytics on Blogger (this platform) go all the way back to 2006, but it says I have posted 1,781 posts, with almost 3 million views.

The most popular blog posts (most views at the top) during that time have been:

• Heart Rate and Post-Exertional Crashes in ME/CFS 
• Orthostatic Intolerance and ME/CFS
• Vitamin B12 and ME/CFS 
• Treating ME/CFS Sleep Dysfunction (though I would recommend this updated post on the topic from 2023 instead).
• Imunovir and Inosine for Treating ME/CFS 
• The Methylation Cycle: Central to ME/CFS 
• Low-Dose Naltrexone Treatment for ME/CFS 
• Immune System Abnormalities in ME/CFS 
• Effective Treatments for ME/CFS (this link goes to the tabbed page at the top of my blog, which is more up-to-date than the original blog post). 

As you can see, all of the top 10 posts have to do with treating ME/CFS (and long-COVID, added since 2020), something all of us patients are always eager to learn more about. That's been my focus more recently, too, as I've had less time for blogging, though I greatly enjoyed writing about emotional coping, inspiration, and TV and movie reviews here for many years. 

 

YouTube Channel

This week also marks the 5th anniversary of my YouTube channel, started on February 19, 2001 (apparently, I like to start big new projects in February!). There is a long playlist of videos there on Living with Chronic Illness, though my channel also includes lots of videos on books & reading, travel, and the outdoors. The chronic illness playlist includes videos on treating ME/CFS and long-COVID, chronic illness vlogs showing what my daily life is like, inspirational topics, chapters from my book, and more.

Our family now (we're expanding!)

 

Thank you  to everyone who has visited my blog these past 20 years and all those who commented on my posts and interacted with me. I developed some wonderful relationships through this blog. That's what's made all this hard work worthwhile!

When did you start visiting my blog?

How long have you been sick?

How has my blog been helpful to you over the years? 

Let me know in the comments below.

You can also connect with me on Instagram,  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?

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!

NEW! Monthly Newsletter

I started something new last month--something I've been meaning to do for years that my mailing list provider finally set up--and mailed out a newsletter to my subscribers.

My first monthly newsletter, in September, included:

• Quote of the Month - something I read that resonated with my life with chronic illness
• Blog of the Month - introducing a chronic illness blog I enjoy
• From My Book - news (like sales or new formats) or a quote from my book
  
• Videos and blog posts you may have missed

But I would love to hear what YOU want to see in my newsletter! I'm thinking of adding a quick personal update this month.

To receive my newsletter (and notifications when a new blog post is published), sign up at this link or by clicking the Subscribe button in the sidebar of the blog anytime. If you sign up now, you'll receive my October newsletter, going out in a few days.

What would you like to see in my monthly newsletter?

Finding a New Normal: Happiness & Satisfaction in a Life with Chronic Illness

Once again, I have not been able to write much here on the blog because I am still very severely crashed, for over a month now. In fact, these past two weeks have been even worse than before, which is discouraging. I still have no idea what caused this sudden worsening, though I have been working with my ME/CFS specialist to try a few new treatments.

If you're a regular reader, you know that I normal function fairly well, thanks to treatments, and that crashes--from both over-exertion and from infectious triggers--are usually pretty rare for me now. A crash this bad and lasting this long hasn't happened to me in many years, since the very early years of my illness. So, I continue to "rest aggressively," enjoy some books, and watch a lot of old Grey's Anatomy episodes!

Luckily, last month, before this crash, I wrote two guest posts for other blogs that have recently been published, so I'm sharing those here with you today, sitting up for ten minutes before I return to my usual horizontal position.

The Despite Pain blog is written by Liz, who writes a wide variety of helpful, informative, and inspirational blog posts. Be sure to check out the rest of her blog. My guest post, Finding a New Normal, can be read at the link, and you can find the rest of Liz's blog's features in the menus there.

I also wrote a guest post for My Rockin' Disabled Life blog, hosted by Sarah. She often features guest posts by other chronic illness writers, to highlight a wide variety of different chronic conditions and disabilities. I was honored to be included! My post there is called Finding Happiness and Satisfaction in a Life with Chronic Illness. You can read my post at the link, then explore the rest of Sarah's blog.

Both of those guest posts include practical tips, adapted from my book, Finding a New Normal: Living Your Best Life with Chronic Illness.

And now, I'm going to take my own advice: accept where I am today, lie down to listen to my body, and find some small joys in the lovely fall breeze coming through the open window, a hot cup of fragrant lemon herbal tea, and ... perhaps another episode of Grey's Anatomy to make me smile!

Sick Lessons Podcast Interviews Me

At the beginning of the summer, I wrote here about a brand-new chronic illness podcast, Sick Lessons, hosted by my online friend, Sheryl Chan, of the A Chronic Voice blog.

Sheryl's latest episode features an interview with. ... me! We talked about living with chronic illness, my family's journey the past 20 years, lessons I have learned, how to cope, and much more. Best of all, we had a lot of fun, and that comes across in the video, as there is a lot of laughing! Sheryl and I have interacted with each other online for many years, on social media, as chronic illness bloggers, and as fans of each other's blogs, and as you'll see in the video, we had a blast finally getting to chat "in person." And this was no small feat, since we live on opposite sides of the world and are exactly 12 hours apart.

You can watch/listen to the episode on the Sick Lessons website, on YouTube, or I will include the video here in this post. If you prefer to read, Sheryl has provided a full transcript, both on her website and on YouTube (at the above links).

I hope you enjoy watching/listening to the interview as much as I enjoyed talking with Sheryl. In fact, one of the things we talk about in this episode is how powerful and encouraging it is to connect with someone else living with chronic illness.

Tell me about YOUR experiences with chronic illness. 

Could you relate to the things Sheryl and I talk about here? 

What lessons have you learned from your life with chronic illness?

New Podcast: Spoonies with a Purpose

A couple of weeks ago, I shared a new chronic illness podcast, Sick Lessons, started by one of my favorite bloggers.

Today, I have another new chronic illness podcast to share with you, from another favorite blogger!

It's called Spoonies with a Purpose, and the host is Julie Holliday of the ME/CFS Holistic Coach blog. Julie's focus on her blog and in her coaching is "supporting you to find harmony in body, mind and spirit, and to free yourself to live a life of peace and purpose!" I've known Julie for many years; she used to be my editor for articles I wrote for the ProHealth website. She's a wonderful, compassionate person, with some great ideas on how to support yourself in a life of chronic illness.

You can watch/listen to her first podcast episode on her blog (there's a video and also a "Listen Here" audio link) or on YouTube. I'll also include the video below:

This first episode features an interview with Jacqueline Taylor, a patient with ME/CFS and fibro who used her own experiences to reach out and help others. It's an interesting interview, and I learned a lot, too (did you know face yoga is a thing??). Check it out and then subscribe to Julie's new podcast! I can't wait to see more!

Great New Chronic Illness Podcast!

It seems I didn't post anything new here last week. Life's been super-hectic! I had four trips in three weeks, and now I'm scrambling to catch up on everything I got behind on while traveling. The good news is that I am finally fully recovered from the COVID I got in early January and will write more about that next week. 

 

This week, I am fully immersed in getting ready for my annual Big Book Summer Challenge on my book blog, which kicks off this Friday! Everyone is welcome to participate in this easy-going event (even if it's Big Book Winter where you are!). You set your own goals to read one or two or however many Big Books you want between the end of May and beginning of September (audios count, too!). And a Big Book is any book with 400 or more pages. This is the 10th anniversary, so I have some special things planned. The details will be posted on my book blog and on my YouTube channel this Friday, so check it out and join the fun! It's a great way to add some joy to summer when you can't manage big vacations or other special events. Everyone enjoys chatting online about what they're reading and hearing about great books from each other.

And Big Book Summer and I are featured on the latest episode of the Book Cougars podcast! We also talked about my book and this blog.

 

While I'm tied up with that, I thought I'd quickly share a great new chronic illness podcast that just debuted. It's called Sick Lessons and is hosted by Sheryl of the A Chronic Voice blog. Sheryl and her blog have been an active, essential part of the chronic illness community online for years, so I was so excited to hear about her new podcast venture!

In her first episode of Sick Lessons, Sheryl interviews another wonderful blogger, Julie Holiday of the ME/CFS Holistic Coach blog (formerly ME/CFS Self-Help Guru). Julie is fabulous, with some great ideas on her blog and in her coaching for living a more peaceful, satisfying life with chronic illness. And she used to work as my editor for the ProHealth website, so I have worked closely with her and have a great amount of respect for her. You can watch that first episode of Sick Lessons here:

In it, Sheryl talks to Julie about her illness journey, acceptance, healing, and more. It's a great interview and very relatable and inspiring.

Sheryl also asked me to sign up for an interview for her new podcast, but I don't know if we'll be able to work that out. She's in Singapore, and I'm on the U.S. East Coast, so I am sound asleep during all of her interview slots! We'll see if we can work something out. In the meantime, check out both blogs and this first podcast episode - you'll find lots of inspiration in all three spots!

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: Chronic Illness Bloggers

Every once in a while, I like to share inspiration from other chronic illness bloggers around the world, and I am due for one of these round-ups. Anytime you are looking for your own inspiration, visit the Chronic Illness Bloggers page on Facebook and scroll through the latest posts from bloggers (including me).

Here are a few inspiring posts I've read this week and found helpful:

 

Amber of The World Sees Normal blog wrote a very thoughtful and supportive post this week: It's OK to Not Always Be OK. She writes in a very honest and straightforward way and addresses feelings we all have at one time or another, regardless of which diagnoses we are dealing with. Her post really spoke to me.

 

The Dreaming Panda: My Neuroimmune Journey also wrote a new post this week--Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick. It's a very powerful and honest post, where she shares her journey to improve her mental well-being while fighting multiple illnesses.She also talks about a concept that I wrote about in my book--balancing acceptance and hope--and her own personal struggles with that.

 

Shelley of the Chronic Mom Blog has a guest post this week from Megan Clark Neville, a Texas librarian who has been chronically ill for the past 16 years. Megan's post, When You Have a Chronic Illness, You Are Enough, shares some of the same thoughtful, supportive tone and message as the first two blog posts listed here. She talks about feelings of shame, treating ourselves with kindness, and focusing on being rather than on doing. 

 

And for something a little different, check out Through the Fibro Fog blog by Claire, who writes about The Fear of Slowly Coming Out of Lockdown with Chronic Illness, an excellent and thoughtful post about our current situation, as it applies to those of us with chronic illness. She talks about her experiences throughout the pandemic, from the first inklings of what was happening to today, from the perspective of chronic illness. 

 

I hope you found these blog posts as interesting, inspiring, and relevant as I did--and maybe discovered some new blogs to follow!

Let me know your thoughts. 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.

ME/CFS Community Update

“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.' ” C.S. Lewis

 
I am still trying to catch up from my many travels the past two months. I finally cleared my e-mail inbox, but the list of things I want to cover here on my blog just keeps getting longer! I'm going to split the news I want to share with you into Community Updates and Research Updates.

Today's focus is on patients, with lots of exciting news from the worlds of patient communities and advocacy:

Our Own Local Support Group
The local support group I started nine years ago has grown to about 40 families in our region, with a variety of related conditions including ME/CFS, Lyme, EDS, POTS, and more - some with sick adults and some with sick kids, teens, or young adults. We had one of our local gatherings yesterday, meeting for lunch at a restaurant, with ten from our group able to attend. About half were mothers of sick teens/young adults and the other half were sick themselves, and two people were fairly new to our local group and had never met anyone else before. As always, the experience of meeting others with the same illnesses and experiences was reaffirming and helpful to us all. We talked for almost three hours (then I went home for a 90-minute nap!) about effective treatments, the best doctors in the area, our experiences, and more. It is always a very positive, supportive, and uplifting experience, even for someone like me who's been in the group since the beginning and sick for 17 years. As always, I highly recommend that YOU try to find others in your local community - it is life-changing. This article I wrote, Birds of a Feather - The Joys of Community, tells how our group started and provides tips for finding others in your area.

ME/CFS International Awareness Day and #MillionsMissing
This summary and photos from #MEAction of protests and activities held both publicly and online on ME/CFS International Awareness Day all over the world is truly inspiring. Take a moment to read through all the amazing events held on May 12 and to peruse the many photos of patients speaking up, in public and from their beds. Given how isolated and alone most of us were when we started on our illness journeys, it is stunning to see this evidence of patients coming together all over the world to be seen and heard. It gives me even more hope for a better future for all of us. If you didn't have a chance to take part in Awareness Day activities, in person or online, this year, maybe this moving sum-up will inspire you to get involved next year, if even from your couch or bed. After decades of isolation and ignorance, our voices are finally being heard, and it's a powerful thing to see.


Exciting News from Patient Advocate & Community Leader Jen Brea
It's been all over the internet this week - Jen Brea, co-founder of #MEAction and the filmmaker who created the ME/CFS documentary Unrest, is officially in remission. This blog post describes in her own words what happened and how she got to this point, and it's a remarkable story, given how severely disabled Jen was at various times and how well she is now (though still working hard at recovery and rehab). In her case, the underlying cause of her ME/CFS was several mechanical factors in her spine and neck that were corrected with multiple surgeries, something she and her doctors discovered entirely by accident. Although obviously, this will not be the case for every (or even many) ME/CFS patients, I do know others like her and it is likely behind some percentage of ME/CFS cases and so provides clues as to the wide variety of causes and factors in our very complex condition. In that post, Jen describes her elation at her remission, yes, but also her grief, trauma, guilt, and hope. Even if Jen's case is entirely different from your own, we should still be able to share in her triumph and learn from her experiences. There is still so much we have to learn about the various causes and factors behind ME/CFS for the millions of people suffering around the world - many of whom Jen has helped with her film, her advocacy, her activism, and her honest reaching out to others.

Jen Brea and her husband

Other ME/CFS Blogs
Finally, if you're looking to connect with others with ME/CFS online, Liz of the Despite Pain blog, put together a wonderful list of ME/CFS bloggers. Liz doesn't have ME/CFS herself, but she compiled this list for ME/CFS Awareness Day, in honor of her fellow chronic illness patients who do have ME/CFS and to help build awareness for our cause, which I think is a remarkable way to reach out. Check out her list (including this blog!) and go discover some new-to-you bloggers and other ME/CFS patients. It's a great way to begin building YOUR community!


Do you have any news to share from your local or online community? Leave a comment below to help spread the word and connect to other patients.

Good News in the ME/CFS World

Life has been super hectic lately, so I haven't had a lot of time to write blog posts, but I have been collecting little tidbits here and there to share with you. So how about some good news in the ME/CFS world for a change?

New York State Educates Its Doctors on ME/CFS
New York State's Commissioner for its Department of Health included a prominent and accurate ME/CFS summary in his monthly letter to doctors across the state. You can read the full text of the letter here. He describes ME/CFS, explains that it is a serious and debilitating disease, and outlines its symptoms, encouraging doctors to consider it as a diagnosis for patients, where relevant. Even better, he explains that Graded Exercise Therapy (GET) was previously thought to be a viable treatment but has now been debunked and may harm patients - hurray! He even provides a link to Jen Brea's powerful and informative TED Talk about ME/CFS. His only mistake was in calling ME/CFS a rare disease, though later in the letter, he says that over 1 million Americans are affected and the number is probably even higher, due to a lack of diagnostic tools. This is a HUGE step forward for New York - let's hope that other states follow its lead!

CDC Removes References to GET and CBT for ME/CFS From Its Website
Patients across the United States cheered in July when the Centers for Disease Control (CDC) finally updated their website to remove their recommendations of using Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) as "treatments" for ME/CFS. The new text describes the exercise intolerance at the heart of ME/CFS and warns that gradually increasing exercise (as GET does) can be harmful for patients. You can read a summary of the changes they made - and why - here. The CDC website still does not offer much useful advice in terms of treatment for ME/CFS, but at least it no longer recommends these dangerous therapies and explains why they can be harmful. Patient advocates would love to see further improvements to the website, but this is a big step forward that we have been asking them to make for years. Now, we need to get the UK's NHS on board to update their outdated and harmful recommendations as well!

This Blog Was Chosen as Blogger of the Week
Well, this one is more good news for me, rather than for ME/CFS generally, but the more public recognition ME/CFS gets, the more awareness builds for us! Chronic Illness Bloggers, a community of blogs dealing with a wide range of chronic illnesses, chose me as Blogger of the Week back in July. You can read my Q&A here, where I discuss our family's approach to treating and living with ME/CFS, as well as some info about the blog itself. You can also check out their Blog Directory for other blogs dealing with chronic illness (including 66 on ME/CFS and many more on Lyme and fibromyalgia).

NOTE: One of the blog posts I am overdue on is an update on the UK's PACE guidelines, recommending GET and CBT as "treatments" for ME/CFS. As mentioned here, it has been debunked, though that news has been slow to trickle down to doctors and clinics. I will try to post an update next week with all the details.

Our Story Featured on Facing Forward

I wrote a guest post for the wonderful blog, From This Point. Forward., which is hosted by Mariah. Her blog is all about her life with Rheumatoid Arthritis, as the mother of two adorable and active boys. Her posts cover research and other news about RA (an autoimmune disease), as well as inspiration and tips for living with any kind of chronic illness. Check it out!

Mariah hosts a weekly feature, Facing Forward, where a guest blogger answers questions about his or life with chronic illness. I was honored to be a part of this wonderful feature. You can read my full post here:

Facing Forward: Sue

In it, I discuss treatments that have worked for my sons and I, challenges we deal with, tips for managing each day, and how to stay positive and keep moving forward.

If you want more details on the treatments that have most helped us, check out my own blog post on Effective Treatments for ME/CFS.

Thanks to Mariah for this wonderful opportunity to be featured on her blog. It's a great blog - hope you enjoy it!

Weekly Inspiration: Inspiring Posts on Other Blogs

Yes, I'm still here. Sorry there were no new posts here this week (in between Sundays); life has just felt like it is spinning out of control lately. Physically, I had a rough week as my erthyromelalgia flared up badly and spread from just my toes to include my heels, too. At one point, the bottoms of my feet were so sore, I could barely walk barefoot across the room (and I haven't been able to wear socks since September!). Meanwhile, there was just a lot to juggle this week - I negotiated an awesome refinance on our mortgage (which is exciting but took a lot of energy), we had a false alarm scare for 24 hours where we thought our car had been stolen (bit of stress), and both of our college sons came down with a stomach virus. One came home for some TLC and the other stayed at school. I have been wiping everything down with disinfectant nonstop!

Anyway, enough about me. This is Weekly Inspiration, not weekly complaining!

Today, I thought I'd go back to the origin of blogs - did you know the word blog is a shortened version of weblog and that blogs were originally intended for just that, a log of cool stuff on the web? Yup, blog originally meant a list or log of links to other websites.

My own blog is sorely out of date, including the list of other blogs - I intend to work on that as soon as things slow down here (ha ha) - so I thought I'd introduce you to some inspiring posts on other blogs - maybe we can both discover some wonderful new blogs together.

Here are some recent inspirational posts for your enjoyment:

To Get Better This Year Means Getting Better Today on the blog A Chronic Voice.
This brief post shares a very important message, all about taking one day at a time and focusing on today rather than long-term expectations that feel unattainable. Great message and very well said, including some inspiring quotes.

10 Simple Ways to Love Yourself for Valentine's Day on the blog Lilac and Lyme.
A wonderful list of self-indulgences for taking care of yourself. This is definitely something I need to focus on more in my busy life! I wholeheartedly agree with her on reading books and watching old I Love Lucy episodes. In fact, in the early days of our illnesses when my son and I were both severely ill and often homebound together, he and I watched I Love Lucy every day. We can still get laughing together over a funny episode (like when Ricky thought he was losing his hair and Lucy tried her special "treatment" on him!), and my son still often reminds me that laughter is the best medicine!

[NOTE: just a quick warning - her first suggestion is a bath. Anyone with Orthostatic Intolerance (that's 97% of those with ME/CFS, 75% of those with fibro, and many with Lyme) should avoid hot water and keep the temp at or below body temperature. Hot water dilates blood vessels, making OI much worse and making you feel sicker.]

Reduce Stress with an Adult Coloring Book on the blog Xo, Faith.
Blogger Faith delves into the recent adult coloring book craze and the new reports of its ability to reduce stress. I have been known to get my kids' old coloring books and crayons out! I haven't tried any of the newer coloring books, created for adults, yet, but I really want to. I could seriously use a little zoning out time for myself.

Four Tips for Maintaining Resilience When Battling a Chronic Illness on the blog Living Mighty Well.
This post features a short profile of a teen with Mast Cell Disease and POTS, with 4 ways that she makes the best of her life with chronic illness. Inspiring and very relatable for most of us.

The Soundtrack of a Chronic Life on the blog My Brain Lesion and Me.
She provides an overview of the role that music plays in our lives and how it can inspire us or express what we are feeling. She also includes a few excerpts of lyrics from some of the eclectic group of songs that she can relate to. I heartily agree on her choice of The Climb by Miley Cyrus - I always find that song inspiring, and it is on my own Cheer Up/Happy playlist!

Hope you find some of your own inspiration among these wonderful blogs and this wide variety of topics. I think I'm going to pull out the coloring books this week...and maybe watch some old Lucy episodes with my son today!

Enjoy the weekend.

My ME/CFS Blog Featured on Be Our Guest Today!

I wrote a guest post, Our New Normal, that is being featured today at the blog Mom's Small Victories for their weekly Be Our Guest feature!

Mom's Small Victories blog is written by Tanya, who has become a good online friend of mine. I found her blog because she writes about books, like I do in my Book By Book blog, but we have a lot more than that in common. Tanya, a mom like me, has Rheumatoid Arthritis (RA), so she also writes about how chronic illness affects her life and her family. And if you're a blogger yourself, check out Tanya's weekly Small Victories Sunday link-up.

My guest post today is a brief version of my family's experiences with ME/CFS - from my diagnosis to my sons' diagnoses to treatments and coping. The focus on the post - as on this blog - is on being positive and finding the value in even painful experiences, so I also write about the unexpected benefits of our new life and what we've gained through living with chronic illness.

So, I hope you'll go check out my guest post and Tanya's blog!

Happy Friday!

WEGO Health Activist Award Nomination

I was very honored to hear last month that this blog had been nominated for a WEGO Health Activist Best in Show Award! Unfortunately, between my own challenges and my sons' medical problems, I haven't had time to even tell anyone about it until now.


Anyway, the award nominations are open for voting now, so if you have found my blog useful, you can vote for me at this link.

And thank you for eight years of kindness, encouragement, and support!

Learning to Live with ME/CFS on Facebook!

I am severely crashed this week - my once a year, major, stuck in bed kind of crash. At least it's usually just once a year now instead of all the time like it was at the beginning. I suspect my son's cold last week triggered this.

So, I haven't done any writing this week (or much of anything else for that matter), but I did manage to set up a Facebook page for this blog. I've been meaning to do this for a while. I've noticed blog traffic generally slowing down lately (not just on my blog), as more and more people "hang out" on Facebook and interact in groups there. Also, in managing my own Facebook account, I often have to say no to friend requests from blog readers and others in the online CFS community. I decided long ago to keep my Facebook "friends" limited to just family and close friends I know in person (or know very well) - otherwise, it just becomes too complicated for me to keep track of. But I know that some people with CFS use Facebook almost exlcusively to connect with others with CFS.

So, with all of those considerations, I now have a Learning to Live with ME/CFS Facebook page! Check it out and "like" it, and you will be able notified of new blog posts right on Facebook. I am also hoping it provides for more interaction among blog readers - now you can leave comments here or on the Facebook page. Even though I removed the word verification from the comment section on this blog (and believe me, I get some really awful spam because of that!), I still sometimes hear from people who say they wanted to comment but didn't know how.

So, "like" the new page, and I look forward to seeing you there!

I am still trying to figure out how to put a link to the Facebook page in the sidebar here, but hopefully that will be up by next week.

New ME/CFS Website Offers Support

I have still been tied up taking care of my son, with little time for any writing or blogging, but I wanted to take a moment to tell you about a new ME/CFS website that an online friend of mine has launched that I'm really excited about.

The site is called MEcuperate, and one of the things I like about it is its very positive and life-affirming focus, as you can see just from its name. Its focus, as explained on the homepage, is very similar to that of this blog - to help people to LIVE with this illness, with emphasis on support, encouragement, and inspiration.

There are many informational portions - including Managing ME, Recipes, and Useful Links - of the website, but its real potential comes from its interactive aspects.

So, get started by registering for the site with a username and password. Then you can participate in its discussion forums or add your comments to any of the areas of the site, including recipes, pasttimes, crafts, and many others.  Two areas I am most excited about are the book club and movie/TV club, where participants can discuss books and movies. The first Movie Club selection is Skyfall, so once you are logged in, feel free to add your thoughts and comments!

I'm excited about this new way for people with ME/CFS to connect with each other and hope you will go check it out!

Looking for Feedback on Word Verification

Hi, all -

I have noticed lately that Blogger's word verification has become more difficult (and presumably more secure).  I don't really have cognitive problems most of the time, yet I've been having trouble with it on other blogs, often needing 2 or 3 tries to get it right.

So, I'm concerned about you, the readers of my CFS blog, many of whom probably suffer much more debilitating cognitive dysfunction than I do.

I always use word verification because when I turn it off, my blogs get deluged with spam - much of it in Chinese characters!!

But, I have turned it off temporarily to poll you.

So, please leave me a comment here about how difficult word verification is for you.  In particular, PLEASE tell me if you do not normally leave comments BECAUSE of the word verification.

Thanks!

New Website on Latest ME/CFS Research

Sigh...here we are at Friday again...another week where I scarcely found time to write a blog post!  Summer is just so very busy for me, with my kids at home every day, plus my husband has been traveling every single week for business this past month.  It's taking all my energy just to keep up with the day-to-day stuff.  I took my laptop to the pool a couple of days ago, hoping to catch up a bit, but was just too worn out to do anything but lie in a lounge chair and read.  I am devoting this morning to some catch-up work!

Anyway, this post is long overdue.  At the end of May, the CFIDS Association of America officially launched its new website, Research 1st.  It's intended to provide a one-stop shop for everything related to ME/CFS research - the latest news, summaries of important studies, media coverage, and useful links.  The CAA asked me to be one of their initial reviewers of the new site, but with my 2-month long bout of bronchitis and our vacation, I never got to it until this week (bad blogger).

So, I have finally taken a look at the new site, and I am very impressed.  There is a wealth of information there, and it is well-organized.  It has become very difficult to keep track of all that is going on with ME/CFS research (in some ways, that's a good thing!) with all the controversies, increased media coverage, and so many different potential areas of study in this complex illness.  The new Research 1st site is a great place to go to get the latest information, to read more about specific areas of research, and to find out what's new in the field, all delivered in a very factual, unbiased way. 

Here are some of the features that I found most informative:

• A comprehensive list of studies currently recruiting ME/CFS patients (note that some of the current studies are even being conducted by e-mail and phone, making it possible for anyone to participate);
• A link to Dr. Daniel Peterson's new ME/CFS research foundation and its first two studies;
• A summary of all of the major XMRV studies to date;
• A very comprehensive summary of completed ME/CFS research studies (if you are feeling like nothing is happening in ME/CFS research, just read through some of these summaries!);
• The Research 1st Blog, a great way to stay up-to-date on the latest ME/CFS news.

I will definitely be using this new website a lot, and I have signed up to follow the blog.  Maybe that will help me to keep up a bit better than I have been this summer!  Check it out for yourself.