Short post before a wee break + a couple exciting items

Photo of back of head and neck. The hair is pulled up. There are six small injection sites going up along the right side of the spine from shoulders to into hairline..

The injection sites the day of the radiofrequency ablation procedure in my neck. And my messy grey hair.

Hello dear readers.

You may have noticed (or not) that I did not post anything on June 15 – it has taken me a while to recover from all of May’s #MillionsMissing posts, plus the usual fun things that occupy the time of a chronically ill person – crashes, doctors, more crashes, more doctors, fighting with insurance and providers (why are you sending me a bill from something I had done in October 2019?!?!), a radiofrequency ablation in my neck, the results of which you can see in the photo (an attempt to decrease some of my pain; it did help, in that the feeling of the bottom of my skull being squeezed has abated, but obviously it does nothing for my fibromyalgia pain), another crash or three, trying to sleep, coordinating medications (if I had $1 for every medication my insurance wouldn’t cover, I’d be able to buy those medications), trying new meds, etc. etc.

I know for a fact that you did not notice the post I published on June 17 – a #ThrowBackThursday update of The Questions interview I did with writer R. J. Davnall (originally published September 27, 2012). I re-published the original post, not realizing it wouldn’t automatically send it to my subscribers. (Lesson learned for future The Questions updates.)

In the past, I have (obviously) taken breaks from blogging – all of them unplanned. Unfortunately, I have to take a break and do some long-overdue under-the-hood maintenance on my blog or my blog itself will break.

And I’m not sure I can do it myself, or how long it will take me.

The sad thing is that I was around when the internet got started, and I dragged my employer, the Center for Puppetry Arts, into the Internet age by procuring us the URL puppet.org and getting us email and setting up a website. In 1996. (Check out the Wayback Machine’s first snapshot of the site. Oh, it is sooo bad.)

And my entire marketing career, I did websites and e-marketing and coding and wireframes and froogle and SEO and all of it (i.e. writing and coding and compliance and webmastering).

I was taught how to code by geniuses who could write it in a txt file (a lá off the top of their head, no hints needed).

My first personal website was in 2005 and I coded it using the program Dreamweaver (which included hints), and all the art and photography was my own. And I started my WordPress blog in 2012 (also using my own art and photography, which I still do; you don’t really need to know coding to have a WordPress site, tho my perfectionism means I often tinker with the code. When I can remember it, that is.).

I also used to do freelance work with small businesses and artists to create their web presences and online stores and branding and all that good stuff…

But now I’m disabled and my brain doesn’t work right anymore. Just the thought of all of this makes me nauseous and depressed. I should be able to do it myself, quickly and easily, but I can’t.

And I shouldn’t have let it get so far gone, but I’m doing the very best I can – about 1/90th of what I used to could do.

I’ve been putting off this maintenance for far too long, but I can no longer ignore the big red warning sign and the less-scary-looking “site health should be improved” messages.

Thankfully, my super-awesome web hoster, Lyrical Host, will help me on some of the items, but I still have to direct them and make decisions. And even more thankfully, they just had a contest to win help from a Virtual Assistant, and thank you Lyrical Host and fate! ~ I learned just today I won five hours with a VA, who hopefully will be able to point me in the right direction.

(Note: I’m an affiliate of Lyrical Host, and if you switch your site (which was soooo easy, even for brain-fogged me!) to them, or decide to start one, just use the code “dsblog10” at checkout and get 10% off your first hosting plan payment!)

Hence: the break. Wish me luck.


Collage of seven photos of the same white woman. Above the photos, it says ‘dSavannah turns 50 in 10 days (7/11)!’ Top row: 9 is a little girl with dark brown hair. A lit candle to her left is taller than she is. Top row 24 is a sideways photo of the woman; she is wearing white and has a lot of things on her lap. Middle row 48 she has long dark hair and glasses, and is wearing a black shirt. She is holding a box with cupcakes. Middle row 30 she has shoulder-length dark hair and bangs, and is holding a huge cookie cake that says Happy 30th Birthday. Middle row 38 she is wearing a pink Happy Birthday hat and grinning, and wearing a cap-sleeve flowered shirt. Bottom row 34 she is sitting on the floor surrounded by tissue paper and presents. Her hair is pulled back and she is wearing a dark top. Bottom row 41 is a close-up of her face; she is laughing and wearing a sparkly tiara. Caption below the photos says ‘top row: 9 (1980); 24 (1995); middle row: 48 (2019); 30 (2001); 38 (2009); bottom row: 34 (2005); 41 (2012)’.

That’s right my people – in a few short days (on July 11), I will turn 50.

I don’t know how that happened either. Not only is it weird to be this age (as my grandfather used to say: “I knew I would get old; I just didn’t know it would be this soon!”), but I’ve pretty much lost the last decade to chronic illnesses. Both in the sense that they were pretty sucky, but also that I don’t remember most of it.

If I had my druthers, I would have an epic party to celebrate my big Five-Oh, but gestures at everything, and I’m ill with MEcfs (among other things), so that would probably kill me.

Even tho I can’t have a party, you can better believe I will be celebrating. Mysterious packages and cards have been arriving for a few weeks now. (Which I will not open til The Day.)

I ordered a custom silver, purple, and blue tiara from a creator I found on twitter (Kelly, who you can also find on instagram), and let me tell you, it is everything I hoped for and more, plus it was made by a human. (Well, the photos look amazing; it hasn’t arrived yet, tho it has been shipped, and USPS tracking estimates it will arrive on Saturday, July 3.) (Oh, and hubs paid for it, as part of my birthday. Thanks, love!)

I also ordered a dress from Amazon (which ended up a gift from a friend who sent me an early birthday present of an Amazon gift card; Thank you!), and two dresses from a site that’s new to me, eShakti (that you can also visit on Facebook and twitter), and I cannot say enough good things about them. Every dress is more beautiful than the last, and they are very well made. Plus, they have pockets! If you decide to order from them via my referral link, you’ll get the “the gift of perfect fit +$25 off their first order”, and I’ll get money off my next order!

Assuming I have the energy, I’m gonna be like <insert appropriate celebrity name here> at the Oscars with the dress changes!

(Short tangent: a side effect of my illnesses has been weight gain and weight loss, and then weight gain again, and the dresses in my closet with textures that don’t bother me or a style that doesn’t constrict me or cause pain don’t really fit anymore. It was kind of sad, trying on my pretty dresses that don’t look all that good on me. I really ought to let them go… However, the dress I wore on my 30th birthday [middle picture, above] still fits!)

My family has some surprises in the works, but I’m not supposed to know about them (and I don’t actually know details, just that they are happening).

I have always loved my birthday – it is totally my Favorite Holiday. And when I am able to blog again, I will definitely share some photos with y’all. (I will post a few on my Facebook page, if you can’t wait to see them.)

Pink text on white background with a pink crown on top. It says 'I can't keep calm because it's my birthday month!"If are able and would like to help terribly ill #MEcfs patients like me, please donate at least $7.11 in my name to the MEcfs charity of your choice so that I can celebrate a not-so-distant birthday in person: Open Medicine Foundation and SolveMECFSInitiative, organizations that are looking for a biomarker and a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal! (Donations are tax-deductible in the U.S.)

(It is of course not required by any means, but if you feel the urge to send me a present, check out my Amazon wishlist [now conveniently separated into categories: dSavannah’s health needs, Books by Other Spoonies, Miscellaneous stuff., books for my hoard!, crafty stuff, and music I’d like]. If you’re worried your gift may arrive too late – don’t: I have no problem celebrating for a long time. If you’re worried it will arrive too early – don’t: I’m saving them all to open on The Day!)


Blue background with gold confetti. The words '10th annual Wego Health Awards Endorse Now' are in a dark blue circle surrounded by a gold circle.Help me help others – year 3!

In exciting news, I have once again been nominated for the WEGO Health Awards – the third year in a row! I’m honored to say I’ve been nominated in ✵three✵ categories: Best in Show: Blog, Best in Show: Twitter, and Patient Leader Hero. That means three people think I’m a #PatientLeader who is “making a difference in the online health community”! (Thank you to my nominators!)

Today marks the first day of endorsements: you can “endorse me” on my profile on the WEGO Health Awards the site. Simply click the link (or one of the images) to go right to the “Awards” page on my profile, and click the light blue thumbs-up that says “Endorse this Patient Leader” under the list of my 10th Annual Nominations.

The three WEGO award logos for Best in Show: Blog, Best in Show: Twitter, and Patient Hero LeaderA window will popup that says “Please tap on awards you wish to endorse dSavannah for:” with the three categories under it. Once you click on a category (or all three; I’ve been reliably informed that you can endorse me for all three categories),  and input your name and email address, a blue “endorse” button will show on the bottom of the pop-up. Click it, and that’s it!

As the WEGO people put it: “Think of it as a way to give a shout-out or virtual hug to your favorite Patient Leaders.” (In this case, yours truly! And I’m grateful to every single person who takes the time to do so.)

How does this help me help others? Well, by endorsing me, and then sharing that you’ve done so, I hope this will help other patients find my blog, and that way my words and my advocacy will help even more people! (Did I use the word “help” enough in this paragraph? 😉 )

If you’re wondering who in the heck is WEGO health, according to their about page, “WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders.”

This blog post explains How The WEGO Health Awards Work, a “program created to recognize and honor those making a difference in the online health community.”

FYI, “the endorsement process helps select top Patient Leaders to move on to the finalist round. The three most endorsed nominees in each WEGO Health Award category will automatically become a finalist.”

Now, I don’t expect I’ll be one of the top three most endorsed nominees in any category (in 2020, they received over 15,000 nominations!), but I certainly appreciate the shout-outs and support!

Endorsements are open until July 31.


PS: If you enjoyed or appreciated what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.) Thanks!

Also, I was obviously kidding about this post being short, and my blogging break probably won’t be very “wee” either. And if you see any typos, as always, please let me know!


Before you go:

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

  • with a $3 tip at ko-fi.com/dsavannah. Occasionally I post photos there that I don’t post anywhere else – this helps keep my blog ad-free, and supports my habit of taking medication (currently they cost me over $400 a month!). Thanks to the anonymous person who gifted me Ko-fi Gold, you can also set up a monthly donation.

You can also help me by clicking my affiliate links – As an Amazon Associate [affiliate link] I earn from qualifying purchases. This means if you click a link, and buy something (not necessarily even something I’ve linked to), I supposedly get a wee percentage of the sale. Doesn’t cost you anything, and helps me support my taking medication habit. (Note: links to my wishlist do not count, for whatever reason!)

I am also a (new!) affiliate of Bookshop.org, an online bookstore with a mission to financially support local, independent bookstores in the US, and I will earn a commission if you click through and make a purchase. (Sorry; they do not ship internationally as yet.)

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

Posted in #dSavannahDefects, advocacy, chronicillness, community, contest, disability, family, friends, giving to others, hard work, health, inspiration, making a difference, opportunity | 2 Comments

#TBT: The Questions with R. J. Davnall: writer, musician, lecturer, possible alien

dSavannah note: Some of you who are newer readers of my blog may not know that I previously used my blog to promote my art and writing, and other artists and writers, specifically in my interview series called The Questions. Since it’s been quite some time, I want to go through all of those previous posts, contact their subjects, and update them with current info, re-publishing them as a #ThrowBackThursday. (I also plan to create a new series of The Questions for my fellow #ChronicIllnessBloggers and disabled creators.)

Sadly, it will take me a long time to do this: I first emailed myself last JUNE to start this updating project, and I first contacted Becky this past March, and am finally just now updating this post. Le Sigh, as I am prone to say.

This post was originally published September 27, 2012, and updated June 17, 2021.


R. J. Davnall (or Dr. Becky Davnall, as some know her), hails from Liverpool. And not Liverpool, New York. Liverpool, United Kingdom. Our cousins across the pond.

When I first published this post, she was a PhD student, working on a thesis about something that my feeble mind couldn’t comprehend then, and definitely can’t comprehend now.

But since Becky is super-cool, and funny, her posts regarding it included comments like “Got the word ‘gobbledegook’ into my thesis. It’s another one crossed off the list!” and “Actually doing proper, intellectually-respectable research. I can tell, because I’m reading about something called ‘graph structuralism’. WHHHYYYYYYY?!?!?! cries.”

I just wish I’d included the word ‘gobbledegook’ in my thesis. Oh well.

She now has her PhD and lectures at a university, and! her debut novel, Heaven Can Wait, was just released!!! Woot! (So, maybe not so terrible that I took so long to update this post.)

Book cover: Heaven Can Wait by RJ Davnall, book 1 of The Non-Agency. A man in a suit with a blurred-out face stands in front of a stained-glass window

Becky is also very modest; in her former pinned tweet regarding her book launch, she wrote: “If you don’t need any more convincing that I’m brilliant and just want to buy my book, check out [the description]”:

In the small hours of the morning after my death, I awoke on a sandbar in the Cohl Delta with a Man Who Wasn’t There waiting for me.

Tom never expected to die young; even less did he expect the Men Who Weren’t There to be waiting for him on his death. Who are these Men? And what is the Non-Agency they work for? More importantly, is there any way Tom can make sure that he doesn’t end up in Heaven?

Doesn’t that sound cool????!??!? Please make Becky feel at home as she (re)answers The Questions.

The Questions

5. What skill(s) do you wish you’d learned as a kid?

The ability to shut up when I don’t know what I’m talking about. I still have problems with that to this day (though it’s turned out to be a surprisingly useful flaw when it comes to teaching seminars at university).

dSavannah note: I have to say, being able to sound like you know what you’re talking about when you haven’t a clue came in handy in all of my careers, teaching at university being one of them. And it’s pretty much the definition of ‘public relations’. 😉

6. What do you want on your tombstone?

“Oh, laugh it off. I wasn’t that big a deal anyway.” (Assuming, at least, that I end up a big enough deal for this to be ironic rather than tragic…)

9. What is a guilty pleasure?

Motorsport. As an ecologically conscious liberal, I should be dead set against it, but I love motorsport at all levels from semi-amateur up. I still haven’t completely given up the childhood dream of being a racing car driver.

(dSavannah note: I too would adore being a race car driver. I used to love driving super fast and blasting loud music. These days, I would love to be able to drive at all.)

19. What is one of your pet peeves?

People not answering emails and messages promptly. I’m a child of the modern age (by which I mean I’m horrendously impatient). I get very neurotic very quickly if I send someone an email and don’t get a reply within a couple of hours. One disadvantage of being imaginative is that it becomes very easy to think of obscure ways in which you might have offended someone to the point that they stop speaking to you…

(dSavannah note: I’m afraid I share this trait… even though I grew up waiting weeks and weeks to get a letter from someone. In the mail. Oh, the horror! And even though now it takes me eons to answer messages…)

23. Where is your heart home and why?

At the moment? I’m still looking for it!

24. If you could go back and give your 13-year-old self a piece of advice, what would it be?

“Look, I know we feel clever and all, but sometimes it is actually worth listening to people older and wiser than us. Me included, squirt.”

24a. What about your 20-year-old self?

“For what it’s worth, the worst of it is now over.”

30. What’s the most expensive crap you own that you can’t live without?

I don’t know if I’d call it crap, but the most expensive single thing I own is my digital piano, and I suspect I’d go crazy in a matter of days if it broke or was stolen. Piano music and pianos have been a part of my life as long as I can remember, and I’ve been playing piano for almost three quarters of the time I’ve been alive.

About R. J.:

Drawing of a what appears to be a female in a purple dress with a brown ponytail and glasses. The figure's skin is blue and the eyes are pink..

Supposedly, this is Becky. Get the “possible alien” comment now?

R. J. Davnall is a brightly-plumed, semi-nocturnal cryptid native to northwestern England. She has been making up stories, including her own, all her life, and thus probably shouldn’t be trusted to write her own bio. When disguised as a human, she is a Lecturer in Philosophy and Game Design Studies, and a member of the Olaf Stapledon Centre for Speculative Futures, at the University of Liverpool.

dSavannah note: For the record, I am not 100% certain that Becky is actually a human. I mean, the only photos she posts of herself are of blue alien-like beings, like this one <—————–. She once posted a pic of a human with long hair in an online writers’ group, but later claimed it was someone else. (She also had antenna back then, but apparently they are now covered by hair.)

What she creates (in her words):

These days, anything that takes my fancy. My fiction is available at Smashwords and sometimes also at itch.io, and my debut novel Heaven Can Wait is out now from Ellipsis Imprints. I also stream regularly at twitch.tv/eatthepen and am starting to get back into making music which will hopefully be appearing online soon.

dSavannah notes: You can watch the launch party for Heaven Can Wait on YouTube (with timestamps and everything).

Check out her online author card.

Purchase the ebook on Amazon US [affiliate link], Amazon UK, or Smashwords.

Purchase a paperback on Amazon US [affiliate link], Amazon UK, Bookshop [affiliate link], Book Depository, or Blackwells.

Becky told me she lives on Twitter. Which I think is true, as I’ve rarely had to wait longer than 60 seconds to a reply to a query. So if you want to say “hi” …


PS: If you enjoyed or appreciated what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.) Thanks!


Before you go:

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

You can also help me by clicking my affiliate links – As an Amazon Associate [affiliate link] I earn from qualifying purchases. This means if you click a link, and buy something (not necessarily even something I’ve linked to), I supposedly get a wee percentage of the sale. Doesn’t cost you anything, and helps me support my taking medication habit. (Note: links to my wishlist do not count, for whatever reason!)

I am also a (new!) affiliate of Bookshop.org, an online bookstore with a mission to financially support local, independent bookstores in the US, and I will earn a commission if you click through and make a purchase. (Sorry; they do not ship internationally as yet.)

In addition, I am an affiliate for my web hoster, Lyrical Host. If you switch your site (which was soooo easy, even for brain-fogged me!) to them, or decide to start one, just use the code “dsblog10” at checkout and get 10% off your first hosting plan payment! It’s a win for all of us!

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

Posted in #TBT, artist, author, book launch, e-book, fantasy, fiction, kindle, music, paperback, publishing, sci-fi, The Questions, writing | Leave a comment

#MEAwareness: MEcfs facts & my parting thoughts

Banner with #MEAction logo in red that says #MillionsMissing 2021 Timeline: Awareness, Advocacy, Community, and Support. May 9th: Gather Allies is checked. May 10th: Share Your Art is checked. May 11th: Attend Local Events is checked. May 12th: #MillionsMissing! Live events throughout the day! Share on Social Media! is checked. May 13th: Attend Local Events! is checked. May 14th: Connect with Community is circled.

Well, this is the end of #MillionsMissing2021 and the last of my #MEAwareness posts for this month. (I’d say for this year, but we all know that isn’t likely.)

Today, Friday, 5/14, is a day to Connect with Community via #MEAction‘s “Gatheround” Community Meet & Greet at 12pm-1pm (PST) / 3pm-4pm (EST). Hope you are able to attend!

At Wednesday’s #MillionsMissing2021 global event, they announced a new research initiative: #MEAction’s Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease), a survey-based study to probe more deeply into ME/CFS and Long COVID, as well as the co-morbid conditions POTS (Postural Orthostatic Tachycardia Syndrome), hEDS (hypermobile Ehlers Danlos Syndrome; which I have), and MCAS (mast cell activation syndrome).

As they wrote in the email:

This is a huge endeavor that is years in the making! Today, as part of #MillionsMissing, you can sign up to be a part of this brand new study that will give researchers and clinicians insight. We need all your help to gather the richest dataset on complex chronic disease ever created.

As soon as I recover, I will definitely be signing up. (I’m already part of Solve ME‘s You + ME Registry and Biobank, and CreakyJoints‘s Arthritis Power Research Registry, which I qualify for because I have osteo arthritis and fibromyalgia. You can join the first if you’re healthy or an MEcfs patient, and the second if you have arthritis. Both allow you to track your symptoms via an app, and the data is then aggregated for researchers to study. Just another way I can help.) (Also, I nerdily like take surveys. And I used to enjoy creating surveys as part of my marketing jobs!)

I attended yesterday’s Virtual Georgia event, which was wonderful, but it made me very very extra tired. My symptoms are flaring: my head feels like it’s visibly pulsing, and the thoughts in my brain are flying around like flopping fish, and I’m having difficulty catching them; my temperature dysregulation is acting up again – I’m hot-then-cold, hot-and-cold, hot-then-cold, sweating-and-freezing; and of course there’s the increased pain levels all over my body, even in places that don’t usually hurt so noticeably.

Thus, I won’t be able to attend the Meet & Greet. Also, after I publish this post, I’m 99% sure I’m done for this week. I’ve tried to rest between my activities, but the adrenaline – and my stubbornness (and “tenacity”, as a friend called it) – is keeping me up. And it’s past time for me to REST. Aggressively.

I’ve said before that my blogging and advocacy is an act of defiance: this disease may take my literal voice away (as it first did two years ago for #MillionsMissing 2019, and does periodically to this day), but I won’t be silent.

On Wednesday, a relative texted me a link to the musician P¡nk’s song “Wild Hearts Can’t Be Broken” [Youtube link] from her 2017 album Beautiful Trauma, [affiliate link], with the note that she was dedicating the song to me. The lyrics made me cry:

I fight because I have to
I fight for us to know the truth

There’s not enough rope to tie me down
There’s not enough tape to shut this mouth
The stones you throw can make me bleed
But I won’t stop until we’re free
Wild hearts can’t be broken

Yup. That’s me. Even tho this advocacy is actively harming my body and brain, and the crash will be great, I’m doing it willingly and with love for all of the patients who are too ill to advocate, or temporarily unable to, or who are afraid to publicly tell their stories about their illnesses. I’m doing it so they will know #YouAreNotAlone, something I wish I had when I first got ill. And I won’t stop.


As I am completely worn out and have no more thoughts in my brain and am even slightly delirious, I will close the week with some facts about MEcfs (graphics created by #MEAction):

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) ~ 2.5 million Americans affected by MECFS’ Has #MEAction logo and white and red abstract art.

That’s right – approximately 2.5 *million* people – in the US alone – have MEcfs! And that number is probably low, because so many never get diagnosed.

 

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) Most cases triggered by an infection, including other coronaviruses.’ Has #MEAction logo and blue, white, and red abstract art.

We don’t know what triggered my MEcfs.

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) 25-35% of COVID-19 patients are now experiencing long-term effects’ Has #MEAction logo and blue, white, and red abstract art.

That’s why we use the hashtag #MillionsMore: current estimates indicate 160 million people worldwide have gotten the virus, which equals approximately *40 million* experiencing long-term effects.

 

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) Funding at 249 out of 265 in the NIH disease spending portfolio.’ Has #MEAction logo and blue, white, and red abstract art.

That means MEcfs is not funded at the same level of the disease burden (or “the impact of a health problem on a given population”) – it’s severely underfunded by the NIH (National Institutes of Health).

 

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) Most burdensome, most under-funded disease in the US by a factor of 27 (JAMA reported).’ Has #MEAction logo and blue, white, and red abstract art.

Yup: totally underfunded, as JAMA, a group that publishes research studies, reported.

 

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) ~2.5 million new cases of ME/CFS or more will be caused by the pandemic.’ Has #MEAction logo and blue, white, and red abstract art.

That’s… that’s too many. NO ONE ELSE should have to suffer this disease.

 

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) NO FDA-approved treatments’ Has #MEAction logo and blue, white, and red abstract art.

That’s right: not a single FDA-approved treatment. Patients, like myself, have to experiment until they can cobble together a treatment plan that helps them.

 

Image of graphic that says 'FACTS ABOUT MYALGIC ENCEPHALOMYELITIS (ME) 75% of patients are unable to work.’ Has #MEAction logo and blue, white, and red abstract art.

I am one of those patients. I wish I could work. I would rather work.


If you haven’t read all of the other posts I wrote and published this week, I hope that you will:

Newsweek published a very long article about Long Covid and MEcfs on Wednesday: “In Long COVID, Advocates Battling ME/CFS See Allies and Hope“. I am unable to read it all right now, but what I did read sounded very positive. Us #MEeps hate that a pandemic is what finally brought our disease to mainstream media, but we are glad it finally has been noticed and is being talked about.

Also, if you haven’t watched it yet, please watch the documentary Unrest. (Free on Netflix.) It will truly open your eyes to the reality of living with MEcfs.

And that’s all she (meaning me) wrote for #MillionsMissing2021.

Don’t ask me why I thought it was perfectly good idea to plan on writing and publishing this many posts (I was obviously deranged at the time), or how I managed to produce all these posts (I’m not sure, especially since I waited til the very last second to do so, and it involved waaayy too much pushing myself and sitting at my computer and typing, and very little resting, all very bad for my health and very good for the pain goblins arising and ravaging my body; and also, I’m wearing the same PJs I started out in, and I’m not sure I’ve brushed my hair the entire time, tho I did brush my teeth), and remind me not to do this again next year (seriously. Tell me NO!).

I hope that my efforts have made a difference, and that you have learned something, and more importantly, will act. (Again, you can find a list of things you can do in the first post from this week.)

And please, for all that is holy, please please tell me if there’s anything absurd or inaccurate in this post. If there isn’t a typo or error, it’s truly a miracle.


PS: If you enjoyed or appreciated what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.)

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

Posted in #MEcfsAwareness, advocacy, chronicillness, community, disability, giving to others, health, illness, learning, making a difference, perseverance, shining a light | Leave a comment

#MEAwareness: Guest Post – My Open Letter to COVID Long-Haulers

Red graphic with the words #MillionsMissing and You Are Not Alone, along with the #MEAction logo. Next to that is a drawing of five people joining hands. The middle figure is a white outline, indicating that some are missing.

dSavannah note: Liz Burlingame, like Elke (whose story I posted on Tuesday), participated in ME/CFS Advocacy Day 2021 on Tuesday, April 20, an event sponsored by Solve ME. Liz, along with many others, urged our elected officials to support funding and research of post-viral illnesses like ME/CFS and long COVID, specifically to put pressure on Congress to pass the COVID-19 Longhaulers Act.

She told me she wrote this essay because she’s been sick for 30 years, and it took a pandemic to make ME/CFS relevant. She doesn’t want the long-haulers to face the same stigma and alienation we have.

And that’s part of the raison d’etre for #MillionsMissing2021 – as #MEAction wrote in their Virtual Toolkit, “now, due to COVID-19, there will be #MillionsMore who will be joining the #MillionsMissing. [And] if you are wondering if you have have ME after COVID-19, you are not alone.”

I asked Liz if I could share her words as part of this year’s #MillionsMissing advocacy, and thankfully, she said yes.


Dear Long-Haulers: we’ve been here before

An increasing number of COVID-19 survivors are finding that even after they beat the virus, their health problems still persist. They face a potentially long recovery. The COVID-19 virus is new, but post-viral diseases like myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, have been known and neglected for decades. We’ve been here before.

White female in grey sweatshirt. Behind her is a wall of colorful art. She is giving a half smile.

Liz on an “okay” day. When I talked to her on Tuesday about this essay, she could barely keep her eyes open and was lying down. It’s one thing to deal with it every day, like I do, but it’s another – and so heartbreaking – to see someone else fighting these symptoms.

I am disabled with myalgic encephalomyelitis, or ME. When I was first diagnosed after a bout of the flu, the disease was called chronic fatigue syndrome. Today the same disease is called ME/CFS.

The CDC estimates that 1 – 2.5 million Americans suffer from ME/CFS, although many remain undiagnosed. Despite our numbers, people with ME/CFS have been systematically marginalized and ignored. The concern now is that COVID “long-haulers” will face similar disdain.

COVID long-haulers are reporting an array of symptoms that include profound fatigue, memory and cognitive problems, headaches, muscle aches, unrefreshing sleep and more. These symptoms have kept formerly healthy people totally debilitated for weeks or even months. Crucially, these symptoms mirror ME/CFS. But there is hope.

The profound fatigue reported by long-haulers is totally familiar to people with ME/CFS. It’s a condition called post-exertional malaise (PEM). PEM is the defining characteristic of ME/CFS. It means that when you exert yourself, you experience a physical shut-down and a worsening of your symptoms. Patients call this a “crash.”

Imagine that your body is a battery and it’s holding a charge of only 10%. That 10% has got to power your arms, legs and brain all day long. If you are exhausted by noon, that’s not your fault. It’s your body telling you that your 10% of power is gone. You are done for the day.

I suffered for years before a physician even used the term post-exertional malaise. It would have helped if someone had said the precise words sooner. The term validated my symptoms and provided me with a better vocabulary for describing my pain. It also lead me to find a patient community, and it was that patient community – not a doctor – that taught me how to cope.

There is no specific treatment for post-exertional malaise, but people with ME/CFS have learned how to pace themselves to help mitigate their symptoms. So instead of pushing yourself to get things done, no matter how you feel, the idea is to stay within your own “energy envelope.”

Whenever an activity, either mental or physical, becomes too taxing, you stop and lie down. Immediately. For long-haulers, pacing strategies provide a blueprint for how to navigate your recovery and heal.

My message to long-haulers who might be suffering from post-exertional malaise is to REST. Give yourself extra time to heal now. Early awareness is key. You cannot exercise away post-exertional malaise. Neither can you ignore it and hope it goes away. Old tropes like, “Move it or lose it” or “No pain, no gain” are not helpful. A doctor once said these exact words to me and I took him seriously. I exercised to the point of exhaustion and it caused irrevocable harm. Now when I leave the house it’s in a wheelchair.

If you are recovering from COVID-19 and feeling discouraged that your recovery is too slow, consider the possibility that you are suffering from post-exertional malaise. You are not crazy, or lazy or unmotivated. You are sick. Your physical battery is low. If you feel like you need to lie down, you might really need to lie down. Pay attention to your symptoms and give yourself extra time to heal. Such awareness increases the likelihood that you will fully recover.

Going back to bed now might feel like a defeat, but it could ultimately be the wisest thing to do.


Liz Burlingame is a person with ME/CFS and the state-chapter leader of #MEAction GA. (I’m also proud to call her my friend.) She has battled ME/CFS for 30 years.

Thank you, Liz, for sharing your thoughts, and taking time during your current crash to work with me on this.

One of the things I didn’t include in My Story that I published yesterday (of course, I’ve thought of many details I could add, but I won’t: if I start editing, I’ll never stop) is that I often wonder how different my health might be if I hadn’t pushed myself so hard. When I first started getting ill, and even as I got sicker, I kept working. Hard. I kept pushing. I kept trying. I pushed myself until it feels like I literally burned my body out.

To stop that from happening to anyone else, Liz asks that you visit #MEAction’s campaign to Stop. Rest. Pace, especially if you are one of the #MillionsMore.

If you are financially able, Liz has also requested that you donate to #MEAction, the advocacy organization that is spearheading the #MillionsMissing campaign this week. To help researchers find a biomarker and a cure, donate to SolveME and Open Medicine Foundation. (All donations are tax-deductible in the US.)

And most importantly: tell your Congress members you want them to support the COVID-19 Longhaulers Act (H.R.9027) by signing this letter created by Solve ME. It’s easy, and will only take a few moments of your time, but will make a world of difference for people, like me and Liz, who deal with these symptoms every minute of every day.

Banner with #MEAction logo in red that says #MillionsMissing 2021 Timeline: Awareness, Advocacy, Community, and Support. May 9th: Gather Allies is checked. May 10th: Share Your Art is checked. May 11th: Attend Local Events is checked. May 12th: #MillionsMissing! Live events throughout the day! Share on Social Media! is checked. May 13th: Attend Local Events! is circled. May 14th: Connect with Community.

The timeline of actions from The #MEAction Network.
Today, Thursday, 5/13, is a day to Attend Local Events.
(All virtual, so you don’t even have to leave your bed! Or put on pants!)


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Posted in #MEcfsAwareness, advocacy, chronicillness, community, disability, giving to others, health, illness, making a difference, shining a light | Leave a comment

#MEAwareness: My Story for #MillionsMissing

Banner with #MEAction logo in red that says #MillionsMissing 2021 Timeline: Awareness, Advocacy, Community, and Support. May 9th: Gather Allies is checked. May 10th: Share Your Art is checked. May 11th: Attend Local Events is checked. May 12th: #MillionsMissing! Live events throughout the day! Share on Social Media! is circled. May 13th: Attend Local Events! May 14th: Connect with Community.

The timeline of actions from The #MEAction Network.

Today, Wednesday, 5/12, is the virtual #MillionsMissing2021 global event at 12pm PST/ 3pm ET, 7pm GMT, 8pm BST! They promise 20+ speakers and videos, and a very exciting #MEAction Study Announcement. Hope you are able to attend!

#MEAction has asked that patients share their stories today, calling them “one of our most powerful advocacy tools”.

But before I get started: If you don’t know why the event is called #MillionsMissing, it’s because “Millions are missing from their careers, schools, families and communities because of this disease. Millions of dollars are missing from research and clinical education. And millions of medical providers are missing out on the proper training to diagnose and help patients manage this illness.” (Quote from #MEAction’s #MillionsMissing page.)

And the reason May 12th is the primary day of advocacy? The day was chosen because it’s the birthday of famous nurse Florence Nightingale. (Apparently her parents forbade her from studying nursing. Can you imagine if she had obeyed them?)

As I wrote in my post It’s #MEAwareness Month back in 2018, it’s highly possible that Ms. Nightingale also had MEcfs – she was in Scutari, Crimea in the mid 1850s, where she contracted what they called “Crimean fever”, and she never recovered. By the time she was 38, she was completely bedridden. Yet, she managed to continue her advocacy and important work teaching about health care. Amazingly, she lived to be 90 years old.

I have shared parts of my story here and there on my blog over the years, including in the posts Mourning the end of an era, and #NotEnough4ME, where I wrote about losing my career; Looking back (again), where I summarized 2019 and talked about some of the things I miss a lot; Brain fog and birthdays, where I mused about turning 49 and how much has changed in my life (and hard to believe I’ll be turning 50 in a two short months!).

Many of the posts I wrote about my illnesses are tagged with the category #dSavannahDefects, a phrase I created and used as my theme for the #AtoZChallenge2016. As I wrote in the Theme Reveal post, I made up that phrase because:

The wordsmith in me is delighted that “defects” can be both a noun or a verb. In this case, it’s a noun. I wish it were a verb, that I was defecting to a {mostly} deserted island that served perfect health and scrumptious desserts. More specifically, my topic covers the issues with my health: the invisibility of my illnesses, what’s wrong with my well-being, the crap with my constitution, the fail in my fitness, the ick in my infirmities, my malaise and my maladies, the distress of my disorders (and defects), my dang decrepitudes, and my doldrums and deliriums.”

But what’s my story?

It’s hard to know where to start! But in short, I’m a disabled, full-time Sick Person / #spoonie, and have been since Dec. 14, 2014, my last day of full-time employment.

White female leaning against a light brown stucco wall. She has dark, shoulder-length hair and blue glasses.. She is wearin a red t-shirt with a drawing of five people joining hands. The middle figure is a white outline, indicating that some are missing. Beneath that are the words #MillionsMissing and You Are Not Alone in white letters.

This is the first year I felt like I could spend the money to buy myself a #MillionsMissing t-shirt. I took this photo about a week ago (and clearly I need a haircut! but I’m waiting on my hair stylist to cut my bangs, since I wasn’t able to go to my last appointment!). I look far worse now, since I’ve been running myself ragged this week…

The long version: I was sick before then, in what us #MEeps call a ‘gradual onset’; however, when I first started to decline (sometime in 2011), we didn’t know what was wrong with me. We didn’t know why doing things would cause me pain, weakness and lethargy, or why some days I couldn’t get out of bed, or why the back spasms and joint and muscle aches I’d experienced since childhood had worsened to near-agony levels.

We also thought maybe it was “just” depression – something I’ve fought since I was about ten years old – except I had many careers and was very accomplished and busy, despite my mental health (and looking back, I know depression doesn’t cause most of my physical symptoms). I had been a:

  • marketer – I did marketing and PR for 20+ years, primarily for non-profits, anything related to either discipline: branding, strategy, graphics, copywriting and editing, websites, press releases, press relations, advertising, event planning, collateral development and design, being the boss. You name it, I probably did it. I also did freelance projects where I’d work with small businesses and non-profits.
  • college instructor – I taught part-time as an adjunct instructor in the Business/Technical Programs Department at the local community college in Arkansas, and served on their Business Advisory Board. I then taught full-time as an instructor at the largest university in my state in the Communication Department. (This was also my last job.)
  • artist – I made scarves, paintings, bookmarks, and jewelry. My art was in galleries, and I sold it on my website. I’d often have commissioned special orders. Since I sold my work, I’d say I was a semi-professional artist.
  • photographer – besides my own photos that I liked to take of weird things, people often asked me to take their photos! So, I did! I even had a solo exhibition of my photography. (You can see some of my photos on Facebook in the album A Photo a Day 2013, which ultimately I didn’t complete… because I was too ill.)
  • writer – I wrote poems and short stories, and had a few things published back before I focused on my marketing career. I even had a book published in 2012! (I have a few copies left; if you’d like to purchase a signed one, just drop me a comment. Since I was contracted and paid to write the book, I get no royalties if you buy it from another place.)
  • editor – many, many books have my name in them, thanking me for my editing skills, not to mention the millions of words of marketing things I edited.
  • bibliophile and reviewer – I used to read 80 to 100 books a year, in many genres (tho mostly YA, women’s lit, and sci-fi/fantasy). I always always carried a book with me. I was a member of the special, invite-only Amazon Vine program, where I got to review all kinds of things, not just books! (That is, until they took away my membership because I was reviewing too slowly.) My reviewer rank was in the top 5,000!, but as of right now, it’s 14,768 (out of alllll the reviewers on Amazon!) [affiliate links].
  • singer – in a band; we only lasted about two years, but we had fun playing in local spots in Arkansas.
  • volunteer – if someone asked me for help, I’d generally say yes: I’d plan and work at events, I’d create the marketing materials for them, I’d sort clothes, I’d do whatever was needed.

But all of that came screeching to a halt when I finally “broke” during my last job teaching. Along with it, my identity disappeared. I had always determined my worth by what I did and could do – and all of that was stripped away. Stolen.

I lost my independence. I lost many friends. I lost my income, and all my savings, and went into medical debt trying to get well. (And I truly thought I would figure out what was wrong, and I’d get better!)

I saw many, many doctors, of various disciplines, many of whom refused to treat me, some of whom just passed me off to another doctor, some I’ve lost because they changed practices or retired, some of whom actively harmed me and disparaged me, and a few who help (all in alphabetical order; plural means I saw more than one): acupuncturist, allergist, chiropractor, endocrinologist, ENT, family doctor, gastroenterologist, geneticists, holistic and integrative medicine, life coach, massage therapists, mental therapists, neurologists, ophthalmologist, optometrist, orthopedic doctor/surgeon, pain management specialists, physical therapists, psychiatrists, psychologist, rheumatologists, rieki practitioner, speech language pathologist, and urologist. (Note: I HATE new patient paperwork with a burning, fiery passion.)

I’ve had vials and vials of blood drawn, and ultrasounds, MRIs, CT scans, x-rays, micro-fiberoptic endoscopic examinations (i.e. a camera shoved down my nose to look at my throat), EKGs, echocardiogram, nerve conduction study, endoscopies and a colonoscopy, a barium swallow, nasal swabs, saliva tests, allergy tests…

Between 2013 and the end of 2020, we’ve clocked 13,379 miles going to medical appointments (according to my yearly spreadsheets where I track everything). (I could probably figure out how much money we’ve spent, but that would be harder, and very depressing.)

If you combine all the diagnoses that have been added to my charts over the years, there are over 100. (I know of 87 specific ICD-10-CM Diagnosis Codes, because I’ve copied them from my medical records into my medical history document that I take to every appointment.)

My primary ones are Myalgic Encephalomyelitis with neuroinflammation [dx #G93.3] / chronic fatigue syndrome [dx #R53.82], fibromyalgia [dx #M79.7], and a bunch related to spinal issues, such as spondylosis with myelopathy [dx #721.1], scoliosis [dx #M41.9], and intervertebral disc degenerations [dx #M51.36].

I also have laryngopharyngeal reflux [dx #K21.9], costochronditis [dx #M94.0], and primary open angle glaucoma [dx #H40.1131]. (I could go on, because there are many many more, but I think that’s sufficient, and your eyes probably glazed over before you got to G93.)

All of those diagnoses boil down to two primary issues: severe fatigue and high levels of global, random and never-ending pain. And if I do too much (like I’m doing right now), I will suffer (and am suffering) post-exertional malaise (PEM), i.e., my symptoms are increasing. (You can read my description of PEM in this 2019 blog post.)

Because I’m doing waaaay too much right now, I’m in a lot more pain than usual – my eyes feel like cinders in my skull, my shoulders are burning, it feels like there is a migraine in my lower back, my wrists and arms throb, and so are my legs and ankles. And my head hurts from wearing my glasses so much. Sheer adrenaline and stubbornness are keeping me at my computer.

On Saturday, PEM will hit me like a tidal wave (a cliché that I never would have let one of my writers keep in their manuscript, but I’m too tired to think of anything else) and I will crash – I will be unable to do anything, anything at all, except go to the bathroom, which is a few feet from my bed – and I will likely be that way for a long time.

Other symptoms I experience include (but are in no way limited to): brain fog (and sometimes it’s so bad I call it “brain smog”), where I forget words and what I’m doing, or have comprehension issues, and can’t get my brain to work at all; insomnia and sleep issues, for which I have to take five different meds and supplements, just to get any sleep, and even with those, I wake up every two to three hours; gastrointestinal issues; aphonia / voice loss for varying periods of time (so annoying! and frustrating! not being able to communicate); sensory sensitivity, when light, smell, sounds, and/or movement can cause nausea and actual pain, and I have to avoid them all by hiding in my dark bedroom wearing my noise-cancelling headphones and an eye mask (symptoms which, by the way, means I won’t be able to attend today’s global event, nor was I able to attend Tuesday’s Artist Salon – the sound, light, and unexpected movements will be too much for me to process); and weakness such that I can’t carry a pitcher of water, much less open the car door.

I take 12 different prescription medications and 16 different supplements a day, some of them multiple times per day. I’ve tried many many more of both than I can count, and like most patients, have a “graveyard” of bottles filled with things that don’t help or give me terrible side effects. I’ve had shots in my spine, my sternum, my shoulder, and in a few weeks, my hip.

I have 12 two-inch three-ring binders filled with bills and paperwork from seeing all those doctors, four giant notebooks filled with the notes I’ve taken at each of those appointments (otherwise, I’d remember nothing), and six mini-size legal pads detailing all the calls I’ve had to make.

I’ve read practically jillions of medical papers and articles about my diseases (which is funny, considering I’m a hippy-chick-artist, not scientific at all! and my only Cs in college were my required science courses – everything else was As and Bs). I’ve consulted with numerous other patients to get ideas on treatments and learn what I might expect. (Other patients have been far more informative and knowledgeable than the vast majority of doctors I’ve seen, and have provided far more actionable things I could do.)

And we have no idea what caused me to become so ill. Unlike many patients, I can’t point to a virus I had on a particular date that I never recovered from. We know I have 13 genetic mutations out of the 30 genes tested; ; we know I have adrenal fatigue; we know I have hypermobility syndrome (or hEhlers Danlos Syndrome); and we know I have chronic Epstein Barr Virus with a very high viral load that has not responded to treatments (and no idea how or when I got it). But what triggered my MEcfs? No idea.

A long while after first becoming 100% ill, I accepted that I’m disabled and got a disability parking placard. And far later than I should have accepted it from my doctor, got a rollator [affiliate link] – basically, a walker on wheels – to help with mobility, and give me a place to rest should I need it if I happen to be out (very rarely do I go anywhere but a doctor office). (Aside: you wouldn’t believe how inaccessible doctors offices and medical buildings are for mobility aids: no room for your rollator or wheelchair in waiting rooms, examination rooms, or bathrooms; doors so heavy you can’t open them while using either; main doors with malfunctioning disabled buttons; grab bars in locations that no human could actually use… It actually boggles the mind.)

I fought for disability benefits, which I never wanted to apply for, and never thought I’d actually need – a fight that took me five years, and that I only won after three appeals (including two hearings in front of a judge). Oh, and my Social Security Disability Administration file included 3,377 pages ~prior~ to my final hearing.

My husband is my caregiver. He does basically everything for me: driving me everywhere (my vision has degenerated so much, I can no longer see to drive), grocery shopping, cooking, cleaning, taking me to doctors’ appointments (and in many cases, sitting in and answering questions from the doctors), picking up meds, doing the yard work, rubbing my back when I’m in pain, taking care of our four pets (two cats, one dog, one turtle), dealing with the trash and lawn care and all the million and one things required for daily living, and sometimes even helping me bathe! Not to mention that he takes up the slack financially, since as I’ve discussed in the post Being ‘brave’ (actually, I’m angry), disability benefits are very small, and a far cry from what I made before I got sick. (And, I had zero income for over five years.)

As my husband wrote in a Facebook post this year in support of #MillionsMissing:

I’ve been a caregiver for someone who has suffered from ME/CFS since 2013. It’s been devastating to see such a brilliant, vital, and productive overachiever become nearly completely sidelined by this mysterious disease. It’s been heartbreaking to watch her health decline, despite throwing every ounce of energy we have at turning it around.”

We never expected for that to happen, a mere five years into our marriage – which means he’s been my caregiver longer than our time as equal partners.

We can’t go on adventures like we did in Arkansas before I got ill – spontaneously getting on the road and driving and exploring wherever we ended up. We can’t go antiquing, or poking around bookstores (okay, that one’s for me. He just tolerates it.). We can’t go to concerts, or plays, or museums. Even if we could go to a nice restaurant, which we can’t, there are very few “safe” places I can eat since many can’t accommodate my food allergies (primarily gluten, among others; and lots of restaurants think that offering a burger without a bun means they have a gluten-free menu. It does not.). The last movie we saw in the theater was Wonder Woman (2017). It’s hard to have any sort of physical intimacy – his hand on my leg for just a few minutes can cause a horrible pain flare. The guilt, like Elke mentioned in her guest post, is sometimes overwhelming.

I am rarely able to see my elderly in-laws (who hubs cares for as well!), and they are only a 40-minute drive away. I don’t get to see my cousin’s kids, or my nephew, or my grand-kid-by-proxy (a bestie’s grandchild) grow up. I’ve missed birthday parties and graduations and other important days (long before quarantine times!). I can’t travel; more than five minutes in a car and I’m in excruciating pain. I haven’t taken a vacation since… I’m honestly not sure. 2010, maybe? I haven’t been to the beach (my heart home) since December 2017.

My life – our lives! – are completely different than we ever imagined.

Now I use my skills to help other patients: by writing this blog, by listening, by giving ideas, by making them laugh. I lost my purpose, but thankfully, with #MEAction and other #spoonies, I found another.

As my husband said in the closing of his Facebook post:

[My wife] has been a tenacious advocate for those who suffer from ME/CFS. I would say she’s been a tireless advocate, but it literally takes everything she has just to blog and post about the issue. Recovery from the exertion is long and difficult. May is a particularly difficult month because it’s MEAwareness month, and this is her mission these days. The cost is great, but helping others is worth it. She’s reached many, and made such a positive difference in their lives.”

I am dSavannah, and I am one of the #MillionsMissing.

A series of #MillionsMissing posters of me. They all feature different photos and list different things I miss. They all say Missing since December 2014.

The set of posters I first created for #MillionsMissing in 2018. And it’s all still true.


The video from Chronic Market, that I mentioned in Monday’s art post, is ready! Check it out on Youtube – over 30 artists with ME/CFS from 13 countries contributed imagery and a phrase responding to the prompt “What would you do if you were well tomorrow?”.

Come back tomorrow to read a guest post from another MEcfs patient, this one a letter to long-haulers. If you haven’t already, be sure to read the other three posts I’ve published this week: #MEAwareness: You Are Not Alone, #MEAwareness: Artists with MEcfs, and #MEAwareness: Guest Post – My MEcfs. Also, I can’t believe it’s only Tuesday (as I write this). It feels like I’ve been at this for a month.

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Your support keeps me going, even in tough times. Thank you for stopping by my blog. And be sure to let me know if you see an error or if something makes zero sense! After all, this is the fourth blog post I’ve published in as many days!

Posted in #dSavannahDefects, #MEcfsAwareness, advocacy, chronicillness, disability, giving to others, hard work, health, illness, learning, making a difference, mental illness, shining a light | 6 Comments

#MEAwareness: Guest Post – My MEcfs

Red graphic with the words #MillionsMissing and You Are Not Alone, along with the #MEAction logo. Next to that is a drawing of five people joining hands. The middle figure is a white outline, indicating that some are missing.

dSavannah note: Elke was asked to share her story for MECFS Advocacy Day 2021 on Tuesday, April 20, urging elected officials to support funding and research of post-viral illnesses like MECFS and long COVID. The event was sponsored by Solve ME, along with other patient organizations, to amplify patient voices on Capitol Hill and put pressure on Congress to pass the COVID-19 Longhaulers Act (H.R.9027).

She graciously allowed me to share what she had written as part of this year’s #MillionsMissing advocacy.


My name is Elke Martinez. I am 46 years old and I have a wonderful husband, Mike, two cats (Oliver and Lincoln) and two dogs (Madigan and Sawyer). We live in Colorado.

White woman with brown eyes and dark, short hair. She is wearing a blue t-shirt and a reddish winter hat. Her hand is on her head.When I first got sick in 2006, I was working as a specialty veterinary nurse in the internal medicine/critical care department. I loved my job – it was my passion. After receiving my state license, I decided to pursue an internal medicine license.

Unfortunately, my illness progressed and I had to pause my education. Some doctors told me nothing was wrong, it was anxiety/depression; many others dismissed me as having “some sort of chronic fatigue syndrome” and told me there was no treatment.

Eventually, I could no longer work in the hospital. I had to quit my job. My license lapsed.

Since 2013, my illness has become my full-time job. Since doctors couldn’t find anything wrong with me, I had to become my own doctor and advocate. It took 13 years for me to finally find a doctor who believed me, and this was only after I noticed an abnormality on my MRI.

I’m sure you’ve heard the terms “long hauler” and “long COVID”. You may or may not have heard the comparison to “myalgic encephalomyelitis” or “chronic fatigue syndrome” often referred to as “MECFS”. Well, I am a “long hauler” and I have been since 2006. Something has hijacked my body and I suspect it has to do with my immune system and involves a virus.

When I did this [advocacy] last year, COVID was just gaining traction in the states. I knew then what everyone else like myself knew. There was about to be a second pandemic. And here we are.

I’m sure you’ve had a cold or the flu; you get a headache, you get tired/weak/groggy, you can’t think straight, your muscles and joints ache, and the only thing you can do is go to bed for the next 2-3 days and hibernate until it’s over. Imagine being trapped in this space, not knowing why or if you’ll ever escape. Because with MECFS and long COVID, there is often no recovery.

My symptoms did progress and include vertigo and dizziness, blood pressure and heart rate problems and near fainting – this is dysautonomia. I have difficulty concentrating, focusing, retaining information and near constant grogginess. This is a suspected immune problem called mast cell activation. I also have insomnia, digestive issues, chronic headaches, and chronic pain.

For decades we have known that MECFS often follows a virus. When COVID hit, alarm bells started going off in our community because what we knew and feared was that at some point, patients would develop a neurological illness.

We know that somewhere between 25-35% of post COVID patients develop long COVID. We are seeing this play out on a global scale. My neurological symptoms progressed and in 2013, I could no longer work full time. I was lucky enough to find part time work from home, but it was at a 75% pay cut. I am now 90% housebound – only leaving my home for doctor appointments and short errands.

I’ve had to exist without supportive doctors, without understanding from anyone, and without treatment. I have been disbelieved, gaslit, embarrassed and humiliated. I was never referred to a doctor specializing in MECFS because the majority of people have no idea there are MECFS physicians and researchers. It is they who have laid the groundwork being used to research long COVID.

And we need them; we need MORE of them.

I estimate I’ve lost over $500,000 in income – which has cost the government tax dollars. I have no savings or retirement plan. I feel like a burden on my husband, and feel such incredible guilt at what we’ve lost. We don’t spend money to go on vacations. We don’t spend money to socialize with others. We weren’t able to have children. This is what I’ve lost due to this illness and what we see happening all over the world.

So much government spending could be saved if there were more research and patients could access treatment within months instead of years or decades.

Last year I spoke about how COVID “might” rapidly disable a large percentage of those affected. This is now a reality. This funding is CRUCIAL. I ask you to PLEASE support research funding for post viral illnesses, including MECFS, as an urgent COVID-19 response and to help the millions of us that have been long haulers prior to COVID.


Thank you, Elke, for sharing your story, and for this impassioned plea.

In her honor, and the honor of all other patients with MEcfs (like yours truly), tell your Congress members you want them to support the COVID-19 Longhaulers Act (H.R.9027) by signing this letter created by Solve ME.

Elke also asks that you please donate to: SolveMECFSInitiative and Open Medicine Foundation, research organizations looking for a biomarker and a cure; or #MEActionNet, an organization that focuses on advocacy and that is spearheading the #MillionsMissing campaign this week. Although they are not requesting donations, she recommends the US ME/CFS Clinician Coalition, as they have provided an amazing roadmap of diagnostics and treatment recommendations for non ME/CFS practitioners as well as a great overview for ME/CFS patients.

Banner with #MEAction logo in red that says #MillionsMissing 2021 Timeline: Awareness, Advocacy, Community, and Support. May 9th: Gather Allies is checked. May 10th: Share Your Art is checked. May 11th: Attend Local Events is circled. May 12th: #MillionsMissing! Live events throughout the day! Share on Social Media! May 13th: Attend Local Events! May 14th: Connect with Community.

The timeline of actions from The #MEAction Network.
Today, Tuesday, 5/11, is a day to Attend Local Events!


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Your support keeps me going, even in tough times. Thank you for stopping by my blog. (As stated in the other blog posts I’ve published this week, if you see something wonky, please let me know so I can correct it!)

Posted in #MEcfsAwareness, advocacy, chronicillness, community, disability, giving to others, illness, making a difference, shining a light | Leave a comment

#MEAwareness: Artists with MEcfs

Banner with #MEAction logo in red that says #MillionsMissing 2021 Timeline: Awareness, Advocacy, Community, and Support. May 9th: Gather Allies is checked. May 10th: Share Your Art is circled. May 11th: Attend Local Events. May 12th: #MillionsMissing! Live events throughout the day! Share on Social Media! May 13th: Attend Local Events! May 14th: Connect with Community.

According to The #MEAction Network‘s timeline of events, today, Monday, 5/10, is a day to Share Your Art!

They are hosting a virtual Artist Salon today from 12pm-1pm (PST) / 3pm-4pm (EST), as a way to celebrate and highlight the amazing artists within our community. It will be a fun gathering where artists will share their work and the inspiration for their pieces, plus the role art plays in their lives. Click the link to join in!

As they said when announcing the event: “#MEAction recognizes the important role art plays within the ME community and activism as a whole. Over the years, we have had the privilege of witnessing many of this community’s amazing artists’ work when it has been shared online, featured at protests, or performed on calls and events.”

#MEAction first incorporated art with advocacy actions in 2017, with a virtual event called #Bedfest. Although artists wanted to continue the event, none of us have been well enough to do so! However, a Facebook group bearing the same name lives on, where us #MEep artists share our work.

Some examples of past art shared for #MEAwareness include the #MillionsMissingStockholm Performance in 2018; this stop-motion video project ‘Walk to the mailbox’ from 2016; Bristol Music from 2019; Christina Baltais with a collage called “Out of Reach” from 2020; and ME perspective‘s line drawing (that they call “wild, creative, experimental”) from 2018.

One thing that #MEAction did not point out in their information about MEcfs artists is how difficult it is for patients with MEcfs to create anything at all. These days, I typically stick to photography with my phone (I miss using my “real” camera! but it’s just too heavy!), and pretty much shoot only things in my own yard. Most MEcfs artists have made adjustments to the amount or type of art they do.

As Mary Mattio, an artist in the #Bedfest group wrote, “I work on projects laying in bed, in a dark/dimly lit room with limited energy. For years I’ve only been able to do either writing or digital art until more recently. Have to do it laying in bed, in the dark space, so I’ve adopted a messy layered mixed media style. Perfection be gone!” (She asked me to direct y’all to this post on her blog, Nerves in Nature: Exploration in Photography #1, which works perfectly with today’s theme!)

I am pleased to participate in this action by sharing art by three patients with MEcfs. I hope you enjoy their work and words.


Ann-Britt: ME in our own words

To create this piece, the artist asked MEcfs patients to give her words describing what MEcfs does to them (click the piece to see it larger). She told me that the words are from about 100 patients suffering from ME. Some of the words are ones I contributed (though I can’t remember which ones, exactly), but they all apply. Please take the time to not only look at her drawing, but also read what she included – things that make up our reality.

I should also note that Ann-Britt created this beautiful, heart-wrenching piece eons ago, and I asked her then if I could post it on my blog… and then kept telling her I was putting off publishing it. Now, I’m kind of glad I did, because it fits perfectly with today’s post.

ME in our own words: Line drawing of a woman with long hair lying on a pillow. She has flowers and butterflies in her hair and above her head. She has tears in her eyes. The words surrounding her are: a life sentence alone ashamed betrayed by my body broken caged confined death sentence defeated disappointment disbelieved drained drained dying empty enslaved exhaustion forgotten friendless frightening frustrated gaslighting grief heavy hopeless humiliated imprisoned invalidated invisible isolating lactic acid marathon lifestyle thief living dead lonely loss misunderstood never ending painful paralytic exhaustion paralyzed scared slow sneaky suffering surviving tired torture trapped unheard unrest useless uncontrollable

About Ann-Britt:

dSavannah note: Ann-Britt told me that her husband wrote this bio for her. She said “I think he might have done too much 😃”. Of course, I will publish whatever I’m sent, so here you go (tho, I do have to confess I added in a few commas and a couple of paragraph breaks):

Ann-Britt was born and raised in Denmark where she loved singing, dancing, drawing and swimming. After doctors told her as a young child to take up swimming as physical therapy for weak hip and knee joints, she did so with gusto. She excelled and went on to become a national champion swimmer. Then after moving to California in 1992, she took up figure skating and qualified for adult nationals. She raised a family, taught swimming and pursued her love of singing. Once her kids were grown, she went on to become a Pilates instructor and started getting singing gigs around town.

In May 2018, Ann-Britt got sick and didn’t get better. After seeing a wide variety of specialists who conducted a full battery of blood tests and imaging, many diagnoses were ruled out but nothing was ruled in. She continued to experience a broad spectrum of symptoms including gastrointestinal distress, abdominal pain, debilitating fatigue, headaches, muscle weakness and nerve pain.

On August 10th she needed help walking and by August 26 she needed a wheelchair. She remains in one to this day, 2 ½ years later. Over the years, she has received a few diagnoses, but the primary culprits seem to be Ehlers Danlos Syndrome, craniocervical instability, dysautonomia and Myalgic Encephalomyelitis.

Through careful management of her symptoms, Ann-Britt is able to continue to pursue her love of singing and drawing as a welcome escape from a primarily homebound life.

Check out her website.


Marion Michell: Marjojo from The Marigold Squad

Marion is an exceedingly talented artist and writer who is part of the #Bedfest group I mentioned earlier. Her words and creations are always so beautiful and touching. And majestic. And a lot of other complimentary adjectives I can’t think of right now. I always look forward to seeing her posts.

The art I am sharing today is from what she calls The Marigold Squad, small rag dolls wearing multicoloured super hero(ine) capes. She created five in total, each of them with a different story and different disability. Their slogan is ‘We respect and learn!’, and they are all about love and acceptance.

I am grateful she gave me permission to include her photograph of her art, and what she wrote about the project.

(seen from above): a small fabric doll - wearing an orange top (with a pale blue Black Lives Matter badge) and leopard print culottes over black&white striped curved legs - lies on a red blanket on top of a cardboard bed. She has a pink face and grey/burgundy woollen hair. The green/blue sloth fabric the super heroine cape is made from is just about visible on her sides. An eye-mask and head phones hang from the colourful headboard.

In Marion’s words:

As Marjojo (pronoun she/her), the fourth member of the Marigold Squad, has #MyalgicE and spends most of the day lying down, we have given her a bed on rolls. All she needs now is a remote control. M., also called The Great Dropper as things keep falling out of her hands, wonders about super powers. Do resilience and brief spurts of creativity count?

We’ve taken care to assemble her from cherished elements:

Hair – cut from wool socks (Xmas present by Meryl, my sparkle-hearted carer) which had shrunk in the wash. I wish my own mop were as stylish!

Legs – made from a tote bag I’ve never had occasion to carry. True to life they are too long for the bed.

Super heroine cape – sewn from sloth fabric, previously used for Siddhling’s pyjama pockets. (dSavannah note: Siddhling is another member of the The Marigold Squad.)

Culottes – from a certain leopard onesie.

Eye mask – a tiny piece cut from a friend’s mother’s apron.

Wristband – a ring given to me by one of mum’s neighbours at the old house.

Wheels – four coasters (it’s not like I’m expecting visitors for boozy dinners; by the time evening falls I’m so fatigued even desire for company is blotted out).

Headboard – decorated with Japanese Origami paper, a gift from Lilan Patri. As in real life, the bed’s head end is elevated to help with POTS (Postural Orthostatic Tachycardia Syndrome).

Blanket – a felted scarf made by Anna Arianova.

Stick – knitting needle, and a hag stone Miriam Mica brought me from a beach.

Image description (seen from above) – a small fabric doll – wearing an orange top (with a pale blue Black Lives Matter badge) and leopard print culottes over black&white striped curved legs – lies on a red blanket on top of a cardboard bed. She has a pink face and grey/burgundy woollen hair. The green/blue sloth fabric the super heroine cape is made from is just about visible on her sides. An eye-mask and head phones hang from the colourful headboard.

About Marion:

Marion Michell is a London-based visual artist, blogger, writer. She has severe M.E. and P.O.T.S., and creates with fervour, but at a painfully slow pace, and often in the supine.

In December 2016, her book of poetic prose, SUPINELY SUBLIMELY, was published by Palewell Press (purchase on Bookshop or Amazon [affiliate links]).

Find Marion:


April Thompson & Chronic Market

When April got the idea for Chronic Market, she asked me if I would participate. Although I still have lots of art for sale (jewelry, scarves, photographs, and paintings), and shut down my online stores quite a long time ago, I have no idea what I have left. I also don’t have the energy to inventory it all and find photos and descriptions. But I am grateful that April created the Chronic Market: some day I might have that energy, and you’ll see some of my work on there.

Red Millions Missing poster with #MEAction logo and #MillionsMissing logo. The top has text that reads: My name is April. I’ve been missing since 2006. Missing from: boxing, biking, hiking, running, dancing, drumming, rock climbing, playing basketball, yoga, taking walks, carrying things without help, living with abandon. Bottom right corner of image shows a white appearing female wearing black boxing gloves and in a boxing stance.

In April’s words:

I’m April Thompson, the founder of the Chronic Market, a platform for artists and artisans disabled by ME/CFS to sell their work, share their stories, network, generate awareness, and raise funds for research.

So many people with ME/CFS turn to artistic forms of expression to channel creative energy and bring awareness to our condition, in addition to it being a flexible way to earn some income for those forced out of traditional forms of work.

Like the artists in the Chronic Market, I suffer from ME/CFS, which I developed 15 years ago. I was in peak health and physical conditioning, a multi-sport athlete who had run marathons, boxed competitively, and climbed mountains all over the world. A cold/flu virus lingered and left me so weak I couldn’t make it around the block, though just days earlier I’d been able to run miles on end. It has waxed and waned over the years, but I never fully regained my functioning.

I am blessed to still work a full-time job, but as with all of us, a small bout of physical exertion is enough to potentially make me ill for days.

Our project is run 100% on a volunteer basis, with a minimal percent taken from each sale to cover operating costs, with the remainder going to the creator/vendor. Once operating costs are covered, an additional 5% will be donated to the Open Medicine Foundation, which conducts critical research from private funding on ME/CFS.

Beyond aggregating the beautiful art and wares of our community, we hold virtual workshops, do virtual art demos and other activities to share the talent of our community.

For ME/CFS Awareness Day this year, we launched a Creative Challenge, which has already garnered participation from 11 countries. We asked people to create a visual with a response to the prompt, “What would you do if you were well tomorrow?” and take a photo of themselves holding it. We also paired severely ill participants who were unable to create their own sign with healthy artists, who created a visual for them, in an effort to be more inclusive and spread awareness beyond the borders of our community.

A slideshow with all the submissions will be launched on May 12, so follow us on Instagram, Facebook, or join our mailing list to see the final result.

dSavannah update, 5/11: The video is ready! Check it out on Youtube – 0ver 30 artists with ME/CFS from 13 countries contributed imagery and a phrase responding to the prompt.

collection of nine pieces of art in a three by three grid. Top row: collage with two women and several product labels; fox; colorful abstract collage. Second row: drawing of a blue vase with yellow, purple, and pink flowers; colorful abstract collage of flowers; colorful abstract collage. Third row: watercolor art of yellow, blue, orange, green, and brown birds; silhouette of a cat and dog facing each other; drawing showing the back of a figure with red, wind-swept hair, wearing a white and blue striped top and a black skirt.

I am just a hobbyist / mixed media artist and play around with drawing, collage, encaustic, watercolor (examples above)… I am filling the pages of an old Hardy Boys mystery right now with mini works.

The artists in the Chronic Market, on the other hand, are working at a much more sophisticated level! All items are for sale on our website! We have items for as little as $1, so even people on a limited budget can support these artists with ME/CFS. I’m quite proud of them and this little community that we’ve created and continue to build.

A composite photo of some of their pieces/wares:


Thank you so much to these artists for letting me share their work! There are so many more, and I hope you take the time to search them out.

Come back tomorrow for a guest post from another MEcfs patient, who originally shared her story for MECFS Advocacy Day 2021.

PS: If you enjoyed or appreciated what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.)

Your support keeps me going, even in tough times. Thank you for stopping by my blog. (And if a link doesn’t work, or you see something that doesn’t make sense, please let me know!)

Posted in #MEcfsAwareness, advocacy, art, artist, chronicillness, community, crafting, drawing, health, illness, inspiration, making a difference, music, painting, passion, photography, talent | 2 Comments