Wednesday, May 25, 2022

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!

Thursday, May 19, 2022

Throwback Thursday: Where It All Started!


I got an interesting e-mail a few weeks ago. It was from LiveJournal, one the first (perhaps the very first?) early blog platforms, wishing me a happy 19th anniversary! I had forgotten all about my LiveJournal account, so I clicked the link and stepped back in time ...

I only wrote 14 short entries, between 2003 and 2006, on the site (and then switched to Blogger in 2006), but that brief glimpse into our early years with chronic illness is a fascinating one!

In those very short posts during that timeframe, you can see a huge part of our illness journey. I was dealing with my own brand-new diagnosis of ME/CFS (called CFIDS back then), my son's first brush with Lyme disease, the beginnings of trying treatments for ME/CFS, my struggles with parenting while sick, the extreme highs and lows of chronic illness, and finally, the beginning of my sons' experiences ME/CFS.

In addition, in those few posts, you can see the beginnings of this blog, my mission to find effective treatments, and even my first thoughts of reaching out to find others to connect with.

And here we are, 19 years later! I've been writing this blog for 16 years now, started a local support group that has greatly expanded over the years, started multiple online support groups, and now have a huge network of friends all over the world that I feel connected to.

You can read those early LiveJournal entries here. It's interesting and eye-opening to take a look back, to see where all this began and how far we've come. Jump in the time machine with me!

Did you keep a journal or other records of the early days of your illness?


Thursday, May 12, 2022

ME/CFS (and Lyme) Awareness Day & Month: Help Spread the Word!


May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

  • Check out the #MEAction website for their virtual #MillionsMissing2022, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics (like the one above - there are many to choose from), and more. Check out all the options at the link.
  • Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
  • Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:
"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). It's even more important this year, as we've gone from 2 million with ME/CFS in the U.S. to more than 15 million with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 20 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. Crashes are often unpredictable - I am badly crashed today for no discernible reason. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!
  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. Facts About ME/CFS by Phoenix Rising
  3. The CDC's information on ME/CFS
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)