The LOVE YOUR Challenge – Epilogue

If you’re reading this post on my site (as opposed to getting it via email), you might note that I have updated my site header. I’ve needed to do this for a long, long time: as I’ve (probably) stated elsewhere, I started my blog (waaaay back in 2012) as a way to promote my art, writing, and editing, along with my freelance / consulting business, which I called dSavannahCreative. The photos in my blog header were indicative of that: images of my jewelry, paintings, photographs, writing, and marketing work.

In case you don’t remember what the original header looks like (because it’s gone now), here it is, for one last look:

I also used my blog to promote other authors and artists, primarily through guest posts and my interview series The Questions. And even before I became a full-time Sick Person, I used my blog to talk about issues in our society, with the goal to Make a Difference in the world, and Shine a Light on the Dark Places – I strongly believe we can only make changes if we pull those things we avoid into the light.

As I became sicker and sicker, I switched the focus of my blog to primarily talking about my chronic illnesses and doing advocacy, with the hope of helping others feel they aren’t alone, and to raise awareness of issues many people just don’t know about.

Also, as I’ve stated elsewhere, I blog as an act of defiance: my illnesses might have taken my careers and my old life away (and sometimes my actual voice!), but I’m Still Here.

Back to my header: although I am still creative (it’s in my bones!), I updated my logo a while back to what I’ve always called my blog: dSavannahRambles. After fighting playing with Photoshop and Illustrator, and with an assist from my web hoster, Lyrical Host (who I LOVE [affiliate link]), there’s now a new header that I think better reflects my blog as it is today. I hope you like it. (If you’re reading this via email, click here to see my blog on the web and check it out. And if you’re reading this on the web, ignore this entire bit.)

It’s obviously been a long time since my last blog post (and I missed my goal of publishing on the 15th for both March and April!). Although I really enjoyed doing the LOVE YOUR Challenge in February, and posting a selfie every day, it wore me out! But I almost think it did more for advocacy about my illnesses than all of my other efforts, and I got a lot of good feedback. I even had people tell me they would miss seeing my photo every day! (Color me shocked!)

This section of the post seemed very empty, so I thought I’d share a photo of flowers blooming this spring in our front yard.

It also made me, well, not afraid to show my face, even if my hair is unwashed (like usual), and I’m not wearing makeup (which I haven’t, not in years), and I’m wearing PJs (you could say that’s my uniform these days).

Writing an affirmation every day made me think. I already have a daily gratitude practice (which I’ve done since January 1, 2019), but the affirmations made me look at myself more closely.

As I posted in a group yesterday, before I got sick, I tied my identity into my work and my accomplishments. Then all of that got taken away – practically overnight! – and I had to rebuild that identity. I had to learn to that I am worthy, just for existing.

Writing affirmations for the LOVE YOURS challenge made me look inward, and reinforced that idea. Or, should I say, that truth. Because no matter what society tells us, our worth is not based on what we can produce, or how much money we make, or how high we climb the corporate ladder. Every bit of doing all of that ultimately didn’t, does NOT matter. I’m not the jobs I had, I’m not the awards I won. Those were all superficial. Those did not determine my value or how much I should love myself. Which is a LOT. And you should love yourself a LOT too.

Since the challenge ended (so, almost two months), I’ve taken my cat Cricket to the vet (she’s a #spoonie, too!, with arthritis, respiratory issues, and inflammation); I’ve had both of my vaccine shots (shot one knocked me flat for two weeks, while shot two wasn’t quite as bad, with just loss of taste, a sore arm, some extra achiness, voice weakness, headache, chills, and extreme thirst); at least five more shots in my spine (those hurt more than the first set); 12 doctor appointments; four showers; three outings (not to a doctor’s office, and one of them, I walked in the door of the store and had to immediately turn around and come home; depressing); three visitors (this is the most people I’ve seen in ages! I did a whole bunch of word vomiting on them – sorry guys!); zero good days; 12 productive days; ten semi-productive days; three non-productive days (where I wasn’t quite crashed, but couldn’t do anything either); and 17 crash days.

I meant to share these Epilogue notes for my LOVE YOUR Challenge quite a while ago, but as you can probably understand from that list, I never quite had the energy! Enjoy them now!

(If interested in doing the Challenge yourself, check out Is Was Will Be blog for info on the course.)

Epilogue 1

This Epilogue is very very late (since the Challenge ended Feb 28), but it’s still appropriate!

I sorta knew there was a giveaway involved, because there’s a paragraph about it on page seven of the Self Love Challenge Workbook, but I didn’t really think about it.

Thus, I was entirely surprised when a small package arrived sometime in March. Turns out, I won the Love Yours giveaway – a t-shirt from our challenge leader’s own collection! So of course, I had to model it!

(If you’d like to purchase one of these shirts for yourself, visit the #IsWasWillBeBlog shop.)

Epilogue 2

The first day of the challenge, I posted a photo of a little notebook that I said would be “perfect for writing my daily affirmations”.

Every day (except for the couple I forgot), I would write an affirmation in it, often guided by prompts in the workbook.

After the challenge was over, I printed all of the photos (on glossy paper) and all of the words (on green paper), and cut them out and pasted them into the notebook.

It wasn’t created to hold so much stuff – it’s now an inch thick! – so I keep it closed with a ribbon from my collection. Just looking at it makes me smile.

This second photo shows one of the interior pages of my completed #LoveYoursChallenge notebook.

I love that I can hold this in my hands, a tangible reminder of the work I did on myself, and for myself, for an entire month.

Epilogue 3

On March 8, a friend I’ve known since December 1996 (my word! where has the time gone!), from my early days working at the Center for Puppetry Arts, drove down from the literal other side of the metro area to kindly drive me to two doctors’ appointments, and to give my hubs a break.

At some point during the visit, he gave me a package. Inside was this art and hand-drawn card, created by his wife, Amy Robinson.

She posted this on Facebook:

“A friend of mine is struggling with severe #InvisibleIllness and underwent a challenge to post a selfie every day in February. On one of her posts where she was particularly vulnerable, all of our hearts just broke for her. Another of her friends said, ‘I wish I could send you 9 billion Spoons’. (dSavannah note: My friend Mark, who shares his fiction on the blog My Souls Tears.)

“I was suddenly struck with inspiration, and I needed to make a thing. I had it printed onto canvas to give to her as a gift at the end of her challenge, in hopes it might give her a few spoons in reserve. (8 to be precise, in honor of Discworld, a fandom she and I share.)

“For anyone short on spoons, please enjoy ‘Bouquet of Spoons’.”

To say I was verklempt was an understatement. The challenge not only inspired me, it inspired others, in ways I wasn’t expecting.

The piece now hangs in a place of honor next to my bed, so I see it every morning when I wake up.

(If you don’t know why someone might want ‘9 billion Spoons’, or what a #Spoonie is, read The Spoon Theory written by Christine Miserandino.)

Things you should read / Things you should do

I often run across articles and blog posts that I feel deserve to be shared (not necessarily all of them about ME or disability).

• David Tuller, an investigative journalist, public health expert, and teacher at UC Berkeley, California, is once again crowdfunding to support his work for the upcoming school year. As he said in today’s email: “With this crowdfunding, I’ll be able to continue to expose the research shenanigans of the biopsychosocial ideological brigades.” (Or, in plain English, the people who want to keep saying that Myalgic Encephalomyelitis (MEcfs) is merely a psychological illness, with no biological causes. And what is now being said about long-haulers. Which is patently false, as Dr. Tuller and others have proven over and over again.)

I beg you to give as much as you can to him.

He has written a massive amount of articles about MEcfs on Virology Blog under the heading “Trial by Error”, and done so much to help the #MEep community. If you don’t believe me, check out this post on the site Occupy M.E., called David Tuller: Crowdfunding for Us All, which explains why supporting him is so important. (Author Jennie Spotila has been writing articles supporting his work since 2017!)

It’s ridiculous that Dr. Tuller has to ask a terribly sick, disabled, and mostly poor population to fund his very important work, so I do hope I can count on my abled friends and family to support him financially. The deadline to donate is this Friday, April 30.

• #MEAwareness / #MillionsMissing is next month, the week of May 9, with many virtual events being planned for May 12. I’m working on a series of guest posts to share with you. In the meantime, you can prepare to participate as well. You can donate, buy a t-shirt (or three), write a letter to the editor of your local paper, email your doctor (US only), and share graphics via social media or email.

Also, a big welcome to #MEAction’s new Executive Director, Julia Miele. Read her first email. Read the email introducing her by outgoing Executive Director, and #MEAction Founder, Jen Brea.

If you have a moment, please sign a petition / open letter (PDF) to the NIH & CDC that was drafted by #MEAction expressing a lack of confidence in their interagency approach to ME/CFS. Learn more about #MEAction’s reason for sending this open letter.

• The April 12, 2021 edition of People magazine ran a four-page spread on Dr. Ron Davis of Open Medicine Foundation, his wife Janet Dafoe, and his severely ill son Whitney Dafoe. It focuses on Ron’s fight to find a cure for MEcfs, with the headline “A Scientist Takes on Chronic Fatigue Syndrome: Fighting to Save My Son”. This is a BIG DEAL.

(For comparison, that edition also included an article on Jenny Lawson, the Bloggess, whose new book Broken (in the best possible way) debuted at #3 on the New York Times bestseller list, but her article only had *three* pages. {You can purchase the book on Bookshop or Amazon [affiliate links].})

Anyway, my dear hubs searched the world over (not really, but close), to get me a print copy of the magazine. If you’d like to read the full article, here are my photos of the first spread (JPG), and the second (JPG).

You can also read the shorter articles they published online: “Scientist Ron Davis Is Fighting to Cure His Son’s Chronic Fatigue Syndrome: ‘It’s Like a Living Death'” (includes a video) and “Renowned Scientist’s Son Describes His Chronic Fatigue Syndrome: ‘A World of Pain, Loss and Agony’”.

• Disability advocate Rivka Solomon was featured on PBS News Hour with “A Brief But Spectacular take on chronic illness“. We are so grateful for her efforts; as she said in the interview, “after I do this interview with you, I might end up bedridden and unable to move, literally.” (The page includes a transcript for those, like me, who have trouble processing sounds and movement.)

• The U.S. ME/CFS Clinician Coalition has published two documents to provide guidance to doctors diagnosing and treating ME/CFS patients: Testing Recommendations for Suspected ME/CFS and ME/CFS Treatment Recommendations (both on Google Drive). (Thanks to the blog Learning to Live With MECFS for her recent post about this.)

•  Open Letter to the NIH (National Institutes of Health) on Body Politic, a “grassroots health justice organization at the forefront of the patient-led movement for Long COVID”. They urge the NIH to “prioritize funding projects that build on prior ME/CFS and related chronic illness research”.

• From my Georgia MEep, Wilhelmina Jenkins: “For a number of weeks, some of us African American women living with ME/CFS have met weekly with African American women with Longhaul COVID-19 to share our experiences and lend each other support. Jaime Ducharme of Time Magazine interviewed Chimére L. Smith, Cynthia Adinig, Ashanti Daniel and myself in this excellent article for Time.” Thank you for all you do to highlight the health inequalities faced by people of color.

• Solve M.E.‘s President Oved Amitay was featured on PBS’ White House Chronicle, discussing the link between ME/CFS and long COVID.

• From the Wall Street Journal: “The Science Behind ‘Long Covid’ and the Desire to Wish It Away | We’ve been burned before by attributing unexplained physical symptoms to psychological issues.”

• One of my MEeps, Adam, has created a game on steam and Itch called RB Axolotl. I hope that gamers will check it out. I know it took Adam a long time to create, and he really put his heart and soul into it.

As he said, “it deals and talks about ME/CFS.

“I want to emphasize that the game has an ultimately hopeful message, because I’ve had people stop halfway in, as it becomes rather dark after a character repeatedly goes in for lab tests and is told by doctors that nothing is wrong with them, and all their tests are negative (something most ME patients suffer with at the start of their illness).

“RB: Axolotl explores a bit of my experience in dealing with chronic and mental illness. There is a character, Liam, a sick axolotl who has memories of going to the doctors repeatedly, only to keep getting “NEGATIVE” written in blood red letters on all of his tests. Getting diagnosed with ME later in the story, even if it doesn’t immediately improve his situation, is like a breath of fresh air.

“RB: Axolotl hasn’t reached a ton of players, but I’ve gotten messages and reviews of people saying that the struggle the characters deal with is theaurapeutic. Ultimately, the game has a positive message, of dealing with pain… even if it takes awhile to get there.”

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Before you go:

If you found this post useful or inspiring, please consider supporting me and my ramblings:

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Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Also, if you would like to help terribly ill #MEcfs patients like me, please consider a tax-deductible donation to research organizations that are looking for a biomarker and a cure: Open Medicine Foundation and SolveMECFSInitiative; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!