Just one thing

Once again, I am changing my blog post topic at the last minute (okay, a week before publish date, which as I’ve mentioned, is now “last minute” for me), so you’ll just have to wait longer to read my thoughts on How to Help Someone with Chronic Illness. Sorry. (In the meantime, go visit Beyond Pain’s post How to support someone who has an invisible illness.)

But this topic has been on my mind a lot recently, especially because of my continued tiredness, which leads to me not being able to do everything I need to (and sometimes, anything I need to do).

My “hope” plant on 4/6/19. It continues to grow, even with the cat chewing on its leaves! And as of today, 4/15/19, there is a baby leaf shooting off the non-chewed leaf!

I’m sharing this photo first because I haven’t posted its pic in a while, and also, I didn’t want the first photo you see (and that social media picks up) to be that of my office that looks like a paper and box factory exploded.

Those of you who knew me before my illnesses know that I was the quintessential-Type-A-overachiever-perfectionist person who could multi-task as easily as I breathed, and who often had people wondering (out loud) (to me) how in the heck I got everything done that I did – my regular high-pressure, very busy marketing communications job, my teaching job, my art, my photography, my writing, my volunteering, my blogging & promoting other artists and writers, my freelance marketing & PR, my band, &c. (Honestly, I don’t know either; I just did.)

I was also the most organized person. Ever. In job interviews, the answer to the question “What’s your strengths?” was always, always “Attention to detail and organization”, right after “creative” (of course).

And sitting and doing nothing? I had no idea how to do that. Even when I watched TV, I was crocheting a blanket or snowflakes or a scarf.

But as I have lamented on this here blog and elsewhere, I canNOT be that person anymore. At all. I can do one thing, and one thing only, and then there is no energy or brain power to do anything else. That’s also true for something as simple as showering, that most people just take for granted; on the rare days I actually shower, that’s it for the day. I can’t do anything else. And often, regardless of what I’ve done or the energy I have expended, I have to sit (or, lay in bed, actually) and do absolutely nothing at all. I have to force myself to rest. (Someday, maybe, I’ll be able to “let” myself rest, but I’m not there yet.)

And I can’t crochet or do my creative pursuits any longer. My hands don’t work the way they did in my past life, and using them for barely anything – even when wearing my wrist braces – just brings on severe pain and tingling. (Which makes me so sad. A friend’s daughter is having a baby, and this is the first baby in my history who won’t have a baby blanket crocheted by me.)

I mentioned in my last post that I planned to switch my web hosting provider. Since my last post, I managed to migrate my website, and I was surprised at how exhausted it made me. I’ve come to expect my post-exertional malaise (PEM) (please see below☆ for more details on PEM), but this was waaaayyy worse than usual, especially cognitively. And I didn’t even need to do that much, just answer a few questions and make sure my site looked correct after the migration. But I still got brain-in-outer-space exhaustion (to quote one of my #MEeps)! I’m pretty sure my brain ended up somewhere in uncharted territory too.

Being somewhat of a geek, and being curious, I looked up the “Farthest Known Object From Earth”, and according to this NASA article, it’s spiffily called the EGS8p7 (say that five times fast), and located more than 13.2 billion light years away. I’m pretty sure my brain ventured further than that.

Oh, and how cool that we now have images of a black hole? As of yesterday (Tuesday, April 9)? Thanks Dr. Katie Bouman!

This is the current state of my office. Utter, unorganized chaos. It makes me twitch. I hate it. But I don’t have the energy to deal with it at all!

But I digress. Because I can do so little, and can do so little at one time, I end up with an office / studio (pictured here) that is a complete and utter disaster of boxes, papers, books (I’m like a dragon, only with books, even though I can barely read these days), notes, items I’m reviewing for Amazon’s Vine program (and check it out! my reviewer rank is currently sitting pretty at 5,637!!! out of everyone who reviews on Amazon!!!!), notebooks of filed medical records, medical documents and bills I need to organize and log and file and deal with (all of the ones from the past year!!!), and goddess knows what other detritus has landed in (t)here§.

And it makes me… Ugh. I hate it. I hate chaos. I hate that it’s like this. I miss my little organized space. I miss knowing where to find everything.

But despite my urge and desire and OCD need to fix it, I look at the current mess and instantly become overwhelmed. I’m faced with an impossible dilemma: leave it all alone, and protect what little energy I have, or deal with it and land in a very bad PEM☆ crash, that will take who-knows-how-long to recover from.

A couple years ago, I came up with a strategy that is neither of the above, and which I am sharing with y’all today (since I am magnanimous that way). It’s simply:

Seriously. That’s it. Just pick one thing you can do, and do it. Even if it’s as simple as filing one piece of paper. Then celebrate that you got it done. YAY you!

(Note: I took the photo off the upstairs balcony of our house in Arkansas, on Gaither Mountain, on August 7, 2012. I’m so proud of myself for remembering how to create that in Photoshop! Feel free to click it for a larger photo and save it, print it out, share it, whatever; just please leave my logo and blog link.)

We forget that things to be done are never actually one thing: they are a series of steps. For instance, when reviewing items for Amazon, I don’t just sit down and pop off a review. It’s a process that happens over several weeks or longer, one bit at a time. First, I look through the super secret web page of items I can order, and pick what I want to review. Then the item arrives at my door, and at some point, I photograph it, starting with the package it came in, the package taken apart, and the item itself; I use and test the item; I write notes as I use it so I can remember what I thought of it; I download and edit the photos, adding clarifying text if needed; I write the review, perusing other people’s reviews of the items to make sure I remember to include everything I want to; upload the photos; then post the actual review; after which I wait for Amazon to tell me the review has been approved, and move the folder of pics for that item into my “done” folder. And if Amazon rejects a review for some reason (no idea why! so annoying!), then I have to edit and repost the review.

The same principle applies to all chores and projects: they can all be broken down in steps, whether it’s doing laundry or paying bills or going to the grocery store or doing some project at work or even buying a birthday present for someone.

For some reason, our society practically worships productivity and creation and the rat race over everything. But don’t listen to society. At. All. You are valuable, just for being you. You are worthwhile. You matter. Even if all you can do in a day is Just One Thing.

As I used to say at the end of all my classes to my college students, go on with your bad selves, and to that I’ll simply add: Do Just One Thing. And then celebrate!

Additional thoughts:

David Tuller, an investigative journalist, public health expert, and teacher at UC Berkeley, California, is crowdfunding to support his work for the upcoming school year.

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

He has written a massive amount of articles about Myalgic Encephalomyelitis (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 Return on Investment II: David Tuller, which explains why supporting him is so important.

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 donate.

In happy news, I’m so excited to share that someone sent me a copy of Charles de Lint’s Eyes Like Leaves off my Amazon wishlist. Hooray and thank you dear person☼! Even more thrilling: it’s a First Edition Hardback, and it’s signed by the man himself! (Which I know since I’ve met him & seen him sign my books.) (Oh, and he’s one of my Very Favorite Authors!)

And THANK YOU! to the people who have sent me bottles of Bach Rescue Plus Sleep Gummies to help with my sleep. Y’all are the best!

More super-awesome news! My writer friend, Elise Stephens, who answered The Questions way back in 2012, is a 2019 Writer of the Future with her short story “Untrained Luck”! Read about her week in Hollywood and the award ceremony! And go buy Writers of the Future Vol 35 so you can read her story!

☆ As stated before, post-exertional malaise (PEM) means that any effort, no matter how small, can cause a severe increase [or flare] of my symptoms, both physically (pain and weakness), and cognitively (brain shuts down and I can no longer process stimuli, which can cause pain), and it can also cause me to crash. To wipe out. To be able to do nothing. Even writing this blog post will cause PEM. Even if I’m only working on it for 10 minutes at a time.

A good question came up in one of my groups: what does PEM actually look like? Well, it varies per person, in many ways: when it starts, how long it lasts, how bad it is, what symptoms it causes, etc.

For me, doing something – even as simple as eating – can trigger a small PEM episode where I have to lie down and rest right then. Bigger things, like going to a doctor’s appointment, gets my adrenaline pumping. So although I will feel very exhausted after the appointment, usually the “real” PEM, the complete inability to do anything, doesn’t start until the next day. That’s right: until after I’ve had a night’s sleep. I never really know how long it will last, either. I only know for certain that I will definitely get PEMed if I do something, and I try to plan accordingly, and do pre-emptive rest (if I can) prior to whatever it is that I have to do.

§ I say (t)here because sometimes I sit at my desk to work on my blog, and sometimes I lay in bed and do it. (Hence being a member of the group Blogging in Bed!)

☼ They did not wish to be identified publicly, tho they ‘fessed up to me after I posted my “thank you mysterious person” on my various social media accounts. The package it came in had no note, and the seller had no idea when I called them. I am so touched at the gift and the thought behind it.

All that means is you’re already awesome, and continue to be your awesome self!

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in four years, and I get no disability benefits – and my medications alone cost me over $300 a month!

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

• with a $3 tip at ko-fi.com/dsavannah
• by donating via paypal
• or sending me something from my Amazon wishlist.

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 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!