we’re all just muddling along

It’s now May 15th, and I haven’t written or published a blog post since February, despite my goal to write one the 15th of every month, and despite my previous success (mostly) at making that goal.

I’m trying to write this whilst in bed, and Piper is bound and determined to crush her entire weight on my right arm, making it difficult for me to move it and type. And she keeps hitting the trackpad, making my cursor dance around. On the plus side, she’s cute and is purring like a train. (Also note my super attractive compression gloves…)

When March rolled around, I didn’t post for reasons both personal and pandemic. Then April 15th came and went, and I still didn’t write anything.

And now it’s May, and the less I write, the less I feel I can write, and the more I want to say. But everything is jumbled in my head – a noxious mix of emotions due to everything going on and words that make no sense together.

Part of my hesitation in writing is due to not feeling like I have anything productive to add to the current conversation. Who needs one more blog post about how to deal with the virus and lockdown? What could I say that hasn’t been said already?

Plus, although much has changed for most everyone in the world, as a chronically ill, disabled, 95% homebound person, my life hasn’t changed a bit. The only difference is that instead of me contacting doctors to cancel because I’m too ill, they’ve contacted me to cancel because of being closed.

To make everything worse for me, mentally, this week is #MillionsMissing / #MEAwareness week, as spearheaded by advocacy group #MEAction, and I haven’t done anything.

In 2018, I wrote and published five posts in May and June:

1. It’s #MEcfs Awareness Month – and please act!
2. #MEAwareness: Let’s talk about funding
3. #MEAwareness: What an MEcfs Crash looks like
4. #MEcfs Awareness – and here’s what I’m missing
5. #MEAwareness: Guest Post on Life with ME

In 2019, I wrote and published two posts:

1. May is #MEcfs Awareness Month • #MillionsMissing – and included five “Missing” posters I’d created with my images
2. #MEcfs Awareness: Guest Post on waking up to severe m.e.

And then there’s this year.

I’ve done nothing. Well, next to nothing.

This is what I wrote on Facebook on Monday:

It’s #MEAwareness Week.

I’ve done nothing. I’ve written nothing.

And it’s not because I’m better. Oh, no. I’m lying in bed right now, sobbing from pain and exhaustion, and also guilt for having done nothing.

A load of guilt that’s especially heavy because so many who’ve gotten the virus will likely never recover and will end up sick and disabled like me.

Some of you may be tired of seeing my posts about my disease, Myalgic Encephalomyelitis, and how terrible it is and how much it’s fucked up and stolen my life.

And if you’re tired of reading about it, imagine how I feel, living like this 24/7, with no break, no vacation, no hope, and no FDA-approved treatment, but instead a cobbled-together collection of meds and supplements and other treatments, all of which I’ve had to test on myself, like a science experiment.

Some of you may have never noticed a single post and have no clue that I’m not the same person you knew.

I have no idea how to close this message. My brain is simultaneously on fire and being squeezed into a tiny rock of misfiring, painful neurons.

So instead of writing a new blog post, I’ll be sharing others’ words this week.

Please read them.

I am one of the #MillionsMissing.

As friends kindly pointed out when they responded to that post, it’s not my fault my body has failed me. It’s not my fault I’m overwhelmed and in pain and feel silenced. The whole world is all off kilter. I’m doing the best I can.

As my headline says: we’re all just muddling along. And hopefully, we’re all doing the best we can to be kind and supportive and not give in to the depression and fear of, well, today AND the future.

I’m proud of all the people who were able to participate in #MillionsMissing, who shared their stores on twitter and Facebook and everywhere else they could. I’m grateful for the people carrying the burden of advocacy when I couldn’t, just as I will carry for them when I have the energy and they don’t.

I’m especially grateful to my fellow MEep blogger Jo Moss, who created a campaign – “What we wish people knew about M.E. #MEwishes” – and collected quotes and photos from 80 people! Please go read them.

#MEAction Network published this video a few hours ago (and my Georgia chapter has four or five photos in here, and one of them includes me!), and I couldn’t have said it better myself:

We’d like to say a special thank you to our volunteers, state groups, activists, & change makers who fight for the #MillionsMissing all year long. Your effort, passion, experience, creativity, belief & gifts help to power #MEAction year round.
Learn more: https://t.co/t9EMPyHguW pic.twitter.com/1ITQvrf2jL

— #MEAction Network (@MEActNet) May 15, 2020

To those of you who are feeling discouraged and wan and sad, please don’t give up hope.

My hope plant on April 9, 2020. It continues to sprout new leaves, despite everything. As I said in that original post, There’s Always Hope. Don’t give up.

Things you should read

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

• Joe Galliani, a friend of Liz Burlingame, one of my Georgia MEeps, wrote a short play called “The Least You Can Do” to raise awareness of ME/CFS. Watch on Vimeo.

• Gemma Everson‘s husband has ME, which he got when their eldest daughter was three years old, and their youngest had just been born.Gemma (who I don’t know and doesn’t know I’m plugging her book) wrote a book called Supercharged Superhero to help her daughter understand her dad’s condition. In one of my groups, she wrote: “I kept telling her [dad] was ill but I realised after a while that that story needed to change as it was causing her anxiety… I searched and searched for a book that would help explain but I couldn’t find one so I came up with my own. It changed everything for us and gave her a new language she could use to talk confidently, comfortably and naturally about our situation, and now she’s 5 it’s something she can explain to her friends too without feeling embarrassed.”

  You can purchase the book on her website, amazon [affiliate link], or etsy. She adds, ” I will be donating a large chunk of any profits to ME charities.”

• And finally, the post Perfect Lives by the lovely Shari Shattuck (actress and writer, whose “Ellen” series I love beyond measure, especially Invisible Ellen [affiliate link], its sequel Becoming Ellen [affiliate link], and the new book in the series, Twins [affiliate link], which I just bought even tho I need more books like I need another chronic illness *laugh-sob*).

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:

• with a $3 tip at ko-fi.com/dsavannah. Don’t forget you can set up a monthly tip, thanks to the person who gifted me Kofi Gold!
• or sending me something from my Amazon wishlist (now conveniently separated into categories: Miscellaneous stuff., books for my hoard! , dSavannah’s health needs, low priority: crafty stuff, and music I’d like).

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 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.

Also, if you would like to help terribly ill #MEcfs patients like me, and patients who will likely get MEcfs from this virus, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!