Gentle Reminders

I’m finding it hard to believe that I am starting my 7th year of being a full-time Sick Person, and thus my 7th year of being a #ChronicIllnessBlogger. As I’ve stated before, I didn’t set out to blog almost exclusively about illness – I had the chance to kick-start my creative writing “career” after losing my job in 2011, and everyone said I needed to have a blog and a social media presence. So, I started them.

I was surprised when I looked out the back door and saw a spot of purple in the mess of weeds that is our back yard. I take these flowers as a reminder that you can find beauty anywhere you look. 11.15.2020 (Photo originally posted to my ko-fi page.)

Then, my body had other plans, and I could no longer do what I used to do (All.The.Things), and I switched my focus to chronic illness advocacy.

At first, and for a long time, I was certain I would figure out what was wrong, and get well.

And, spoiler alert: the first part happened, but the second part didn’t.

As I wrote on twitter (but can’t find the tweet….), there’s this big myth in our world that if you get sick, you either a) get better or b) die. That there’s no middle ground of staying ill. Forever. Chronically. And if you don’t get better, you obviously weren’t trying hard enough, or you didn’t do something right, or you ate the bad foods, or didn’t do the proper yoga. Or whatever.

The truth is: many of us live in the middle ground of “not-dead-but-not-better”.

And I think that because we are unable to “do” much, we feel things much more keenly. Focusing on the activities of our day-to-day lives can be difficult, because everything, even minor tasks, is such a struggle.

And, quite frankly, our lives – well, it feels they can’t possibly be real! – who ever heard of someone who is so tired they can’t even eat! Or that it feels like ants are crawling under their skin? Or that showering is practically a special occasion?

Even though it seems fictitious, unfortunately, it’s all too true – so then we believe that we are to blame for our circumstances, even when we aren’t.

And I myself am terrible at this. Just terrible!

If you’re a regular reader of my blog, you’ll know that my goal is to publish a post on the 15th of every month. And if you’re reading this, you’ll notice that it’s far past the 15th.

So why is my blog late?

Because my body had other plans, that’s why. I had plenty of time to get my blog written and published – until I didn’t. My body decided to crash for eight days, starting Jan 8 – a deep, flattening fatigue. (As my dear MEep Kimmi said: “I think the fatigue is often the most upsetting part for me. Like pain is terrible but it’s almost something I feel I’m strong enough to battle. Fatigue isn’t. You can’t.”)

And my body didn’t recover as quickly as it had been doing at the end of last year. (I was surprised the crash lasted so long!) Even now, I’m sitting on my bed, with my laptop, and my eyes are burning and want to close, but words are here, so I’ve got to try to let them out…

Of course, I blame myself for not meeting my self-imposed deadline. “I should have still worked on it”, I tell myself, even tho during my crash I would open my laptop and stare at it in confusion, wondering what I was looking for. Even tho I was so fatigued I could barely get out of bed to go to the bathroom, only a few feet away.

So the point of this blog post, the first month of 2021, a month that is confusing and scary and not really much different from 2020 (well, maybe a little less scary now!), is to give you some gentle reminders.

The first one is simple, and basically my motto:

Be Kind To Yourself.

I know that one’s tough. (See above, re: blaming yourself for things not working.)

And its sister question, which a therapist encouraged me to ask myself when I’m at an impasse:

What is the kindest thing I can do for myself today?

Sometimes, the kindest thing is to go back to bed. Sometimes, it’s eat or drink something. Sometimes it’s going thru a (small) pile on my desk or doing a little (tiny tiny bit of) cleaning.

And a third one, which is:

Give yourself permission to make mistakes.

Click image to download a larger ‘permission slip’ to print. Or, click here to download a printable PDF with four of these on one page.

As I was going thru stuff on my aforementioned desk, I found these “permission slips” that I had printed out at some point. (Sorry; I don’t seem to have a record of who originally wrote them.) I re-designed them (because that’s what I do, and the original had some funky fonts / kerning that I couldn’t let go.) I’ve now hung them on the wall behind my computer, so I have to see them when I’m at my desk.

It’s impossible to be perfect all the time. It’s impossible to not make mistakes, no matter how hard we try! Sometimes we say the wrong thing. Sometimes we drop a treasured, antique glass (sorry, glass!). Sometimes we just don’t do right.

The important thing is to forgive ourselves, learn from our mistakes (if we can! – in my case, don’t try to drink out of antique glasses anymore!), and move on.

And the fourth is what I call:

an “adorable pick-me-up”: the book Drawn Together

I got this book a loooonnng loooong time ago (back when it was first published, in October 2016): Drawn Together: Uplifting Comics on the Curious Journey Through Life and Love [affiliate link] by Leah Pearlman.

I have been following the author Dharma Comics for a long, long time, and was very excited when she announced (back in August 2016!) that she was publishing a book with her drawings. As I am wont to do, I asked if she would be willing to give me a copy for review. To my happy surprise, she said yes.

To my embarrassment, I received the book quite some time ago (November 2016), but because of my health issues, I never did get around to writing my review [affiliate link] (which I didn’t publish until July 2020!) or promised blog post (which I started writing in March 2017!). (I’m soooooo sorry Leah!!!!)

But I finally am, and I think it’s perfect for a post about Gentle Reminders to ourselves.

And I absolutely LOVE this little book. (I loved it so much, I have purchased several copies since and given them as gifts.)

Although the drawings and messages are simple, they are also quite powerful. You can pick the book up and open it at random and whatever is there will speak to your current needs.

It is organized into seven sections: a two-page Introduction; “Loving Me” – on how to love yourself; “Loving You” – on loving others around you (but also yourself!); “When Life Gets Hard” – which includes my favorite part, a poem called “Whoever Told You” (see below); “Choose Your Own Adventure” – on not forcing yourself to do or be what everyone else is; “Finding the Missing Piece” – misc. other topics. The last section includes five pages of notes that are intended for you to cut out and send to people in your life.

Photo I took this morning upon randomly opening the book. We do have the ability to choose, don’t we?

Find Leah:

• Her Website
• Twitter
• Facebook
• Her Comics
• Goodreads
• Her Store on Society 6: get her comics on everything from a t-shirt to a comforter to an art print to a coffee mug
• A short video about her
• Her TEDxBoulder talk: Do You Like me? Do I?
• Buy her book on Amazon (paperback and Kindle) [affiliate link], Powell’s Books, or BN.com (paperback and Nook)

I leave you with this wonderful poem (which I mentioned above), and have hung on the wall behind my computer and look at often (and which I first shared in the #AtoZChallenge 2016 post for Z). (The words are hers; the funky border is mine.)

Feel free to print it out (and I’ve made it clickable so you can get the largest version possible) to remind yourself: you’re awesome. You’re a #Warrior. You’re doing the best you can. Be kind to yourself.

Things you should read

I often run across articles and blog posts that I feel deserve to be shared. These are recent articles that talk about #LongHaulers and #MEcfs.

• The New York Times Magazine: What If You Never Get Better From Covid-19? (warning: this is very long, but also very comprehensive! It is available as an audio story, as well as written)

• The Guardian: Opinion: We’re about to see a wave of long Covid. When will ministers take it seriously?

• I had no idea this existed! And at some point, I’d like to write up my story and submit it: The SolveMECFSInitiative has a campaign to increase understanding of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It’s called Humans of ME/CFS. It has soooo sooo many stories from #pwME, including Timbre, one of the MEeps who lives in my state. I think the stories from youngsters make me the saddest. I HATE that my life was stolen from me, but at least I had a life first. (If you have MEcfs, and would like to contribute, you can submit your story here.)

• On the blog My Brain Lesion and Me: 5 Ways to Help Find The Light In The Darkness.

I added a section to my MEcfs Resources page called “Tracking Documents”. I had previously added a link to the document I use to keep track of taking medications (the file ‘meds_schedule_template’), and have now added a spreadsheet to help you keep track of medical expenses (med expenses – template; it has four workbooks). (Note: they open in google docs; you can download and make any changes you need to make it applicable to yourself.) Hope some of y’all find them helpful!

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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! and rising! since my insurance won’t cover one of my meds, and another one is covered – but my copay is HUGE)
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Your support keeps me going, even in tough times. Thank you for stopping by my blog.

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