Last month’s post kicked my ass. Of course the act of writing was difficult; it was hard enough to articulate my thoughts on #BlackLivesMatter without being accusatory or making it about me, but also, I cried a lot trying to write a proper tribute to Bryher, who we’ve lost too soon. (And all because of careless people who think this virus is hoax, or who don’t care if disabled or elderly people die.)
Buuut, I also forgot to do something technical. Very menial and tiny and easy to do, but I still forgot. (A great reminder of how much I’ve lost due to my illnesses – “detail oriented” was literally one of my top strengths on my resume and at job interviews and in my career.)
My hope plant with yet another new leaf, this one reaching towards the sky. (A photo of this works when I can’t think of anything else, right?) 7.14.2020
That one little thing I forgot set off a cascade of technical issues (that I am unable to describe and you probably won’t even understand), and I ended up sending out the blog post twice to my subscribers. (Sorry, y’all!) And it went on and on…
And then on June 26, I stupidly DELETED MY PUBLISHED POST, which meant that the link I’d shared everywhere no longer worked. Thank you to all the other chronic illness bloggers who had recommended I switch to my current web hoster, Lyrical Host, who, upon receiving my anxiety-laden request, did a workaround for me by 5:32am (my time).
My old hoster would have been like “eh, too bad” and I’d still be kicking myself for making such a huge mistake, but THANK YOU! to Lyrical Host for fixing it without complaint, and telling me not to feel bad for making it. (So seriously, if you need a new web hoster, or even if you don’t, check them out.)
Also during the time I was writing the last post, I had to reschedule four doctors’ appointments that got cancelled due to the big Q, and that involves consulting not only my calendar, but also hubs’ work calendar, and his parents’ doctors’ appointments calendar too, since hubs has to drive them to doctors now as well.
(Have I mentioned how blessed I am to have a husband who does practically everything for me, and a lot for his parents too since their health is declining and they can’t drive anymore either, and he does it with hardly any complaint? {I mean, it’s normal to vent; he’d have to be a robot or android not to have feelings about how awful this is for everyone.} Well, I am. THANK YOU!, darling.)
Since then, I’ve had to schedule three other appointments (or is it four?) … and apparently one office now has the nurses making appointments, which is a giant headache as of course they are, you know, helping patients who are actually in the office!, so that has required several messages via their portal and phone.
Calling and coordinating requires so much cognitive energy, it basically uses up an entire day for me. And then ruins the next day, because it makes me crash.
I tell you all this as a reminder that although the finished blog post possibly appears to have arrived flawlessly to my blog, it doesn’t. Ever. It takes a lot of effort. And if I’m working on my blog, I can’t call doctors. And if I’m calling doctors, I can’t work on my blog. Not just, obviously, at the exact same moment, but that same day. It takes all of my cognitive energy, and that’s it. My usable hours for that day are spent.
I also say this to remind you how debilitating my disease is. Although I’ve basically stopped going anywhere or doing anything, and my life as it was is completely out of reach for me now, stolen away from me, I am bound and determined to not let Myalgic Encephalomyelitis (MEcfs) steal my words.
As I’ve told people, writing this blog and doing advocacy is an act of defiance for me.
Getting older…
dSavannah note: I posted most of the below on Facebook with the photo of myself. I thought I should share it here too, tho I’ve edited for errors and to add a few additional thoughts.
This past Saturday (7/11) was my 49th birthday. The fifth I’ve “celebrated” as a full-time sick person. Without a party. Without much of a fuss, tho I love my birthday and always have. (It’s my absolute favorite holiday!)
I got up and got dressed because it’s my tradition to take a photo ON my birthday. (My hubs sweetly takes a bunch of pics for me because I inevitably have my eyes closed in 3/4 of them.)
So I put on a shirt I haven’t worn in who knows, and a necklace we got a looongg time ago on one of our jaunts, antiquing in Arkansas.
What you can see: the glasses due to vision degeneration, the grey in my hair from getting older, the crow’s feet.
What you can’t see: the glasses need to be replaced because my vision is worse, but the eye doctor closed for a while, and then I had to cancel an appointment due a crash. (Thankfully, I get to see her on August 4. I am so NOT looking forward to searching for new glasses, because I hate doing that! but I am VERY MUCH looking forward to getting new glasses, because these are compounding my headaches since a) they aren’t fitting quite right and b) the prescription isn’t correct so I’m constantly squinting to try to see.)
My hair hasn’t been washed since Wednesday (7/8). It only looks good in the photo because I managed to get it cut on Thursday (7/9) and of course it looks magic after it’s been styled professionally. Of course now, over a week later, it looks awful, but I don’t have the energy to shower.
My back is killing me – spasms & burning. My head hurts. I couldn’t get out of bed until about 2pm. The weight of the necklace is causing me pain. (I couldn’t stay in that outfit very long; about 30 minutes later, the necklace felt far too heavy and the texture of the shirt was bugging me, so back into comfy clothes I went.)
Oh, and my voice is gone again.
I had as lovely a day as I can, considering, and am grateful for the cards and presents I received. (Thank you cards are forthcoming, I promise!)
My 9th birthday, 40 years ago. First party I can remember. (Sorry the photo is blurry – this is long before digital!)
I was a bit naughty and had a White Russian with my dinner (gluten free pasta from Tony’s at Brentwood, a real Italian place; thanks hubs for picking it up and bringing it home!). Part of this illness is alcohol intolerance, so I paid for that drink with a shooting migraine up the side of my head (bummer), but I was able to enjoy a few bites of Tony’s most excellent tiramisu without issue (which I shouldn’t be able to eat, as it’s made of … ladyfingers, which are made of flour…).
We watched one of my very favorite stupid funny movies – Nacho Libre [affiliate link] – and also Bad Boys [affiliate link], which hubs had never seen, which is also funny and dumb. (Both available on Netflix.)
I posted my portrait on Facebook and was overwhelmed with comments and kindness. I screenshotted them (for my “happiness jar”) and it took 24 to get them all!
My life looks completely different than it did on my 39th birthday, or even my 43rd! But: I’m still here. I’m still fighting, every way I can, not just for me, but for others. My ability to do so may be lessened, but who I am, at my core, still exists.
And: I’m hoping I can have a party next year for my 50th. I love bringing people together. And I used to have epic birthday parties. Guess I’ll start saving up energy now!
Endorse me for the WEGO Health Awards!
For the second year in a row, I’m honored to say I’ve been nominated for ✵three✵ WEGO Health Awards: Advocating for Another, Best in Show: Blog, and Best in Show: Facebook.
My last post, Help Me Help Others! – year 2 talks about the awards and how to endorse me.
Or, you can go straight to my WEGO profile and click the thumbs up! Endorsements are open until July 31.
Things you should read
- For her Masters Thesis in Social Justice and Human Rights at Arizona State University, fellow spoonie Carmen Cutler created a Summary of the International Consensus Criteria (ICC) for Myalgic Encephalomyelitis (based on research by Caruthers, et al.). Since the official paper and other sources on the ICC are so confusing, and Carmen’s Summary is so easy to understand, I asked her if I could add it to my MEcfs Resources page. She said yes, and we collaborated on making it clearer and appropriate for patients and doctors to use as a guide.
Please share this ICC Summary with physicians and anyone who wonders if they have Myalgic Encephalomyelitis (MEcfs).
- CONGRATS! to editor Julie Morgenlender on the launch of her anthology, The Things We Don’t Say: An Anthology of Chronic Illness Truths, which was released on June 19, 2020. Buy the book on Amazon [affiliate link]. You’ll get to read my glowing review and thoughts in my upcoming August 15 (or thereabouts) blog post.
- Toni Bernhard has published a new book, How To Be Sick: Your Pocket Companion, which Jennie Spotila reviewed on her blog Occupy M.E. You can purchase the new book on Amazon [affiliate link], or the original How To Be Sick [affiliate link]. Many many of my fellow Spoonies attest to how much the original book helped them, and Jennie’s review has convinced me I need to get the Pocket Companion [affiliate link] as well.
- While I’m promoting new books, I’m excited to share that Heather Lanier’s new book Raising A Rare Girl [affiliate link] is now available, as she joyfully shares on her blog in the post “The Book is Here!“. I’m not sure exactly when in time I started following her blog, Star In Her Eye, but I first discovered her when I read her Vela Magazine article, “SuperBabies Don’t Cry“. (Go read it. Please.)
I managed to snag an e-ARC off Netgalley, and although I haven’t had a chance to read more than the first few pages, I can assure you, it’s a good one. And as she says in her post,
“…we are not only fragile beings, but our fragility is what makes us human. Which is to say good and beautiful and holy.
“Nobody can fully guard themselves against suffering. I learned this nine years ago when I gave birth to Fiona, and I learn this repeatedly since. We are vulnerable: to pain, to heartbreak.
“But we are also vulnerable to love.”
- And finally, a blog post by one of my favorite people, Farrah Garland, about disability and mental health, called “Barred Owl Blues“. In it, she talks about all the fighting that us disableds have had to do and continue to need to do for accommodations and recognition, a fight that seems will never end. And about privilege, which is a hard concept to wrap your mind around, especially if you’ve been not privileged in any way.
As she wrote, “America has had the television show The Simpsons longer than equal rights for disabled people. Let that sink in for a minute”.
By the way, if you’re wondering, “disabled” is NOT a bad word. It’s a word most of us use. I’m disabled. I’m not ashamed of it – tho society would like me to be! And I was, for a long time, because of internalized ableism and stigma. (But that’s for another post another day…)
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 (because I still do NOT want to put ads on my site):
- with a $3 tip at ko-fi.com/dsavannah. Occasionally I post photos there that I don’t post anywhere else.
- 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!)
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 or SolveMECFSInitiative; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!
Blogging and advocacy are the best kind of rebellion! Keep it up!
Am doing my very very best!