Before I get started, a few quick things. This first item has nothing to do with anything in this blog, but it’s such a beautiful story. Please go read it! (Warning: it’s a long thread on twitter. And have tissues handy. It’ll make you cry. But in a good way!)
The holidays are here, and if you are the giving sort, check out these gift guides created by and for spoonies, and in some cases, the actual items were created by spoonies! (In the past, I created gift guides of my own, but… too tired. So bless these bloggers for doing it for me!)
It’s an easy way to find things your friends may like and/or need, and you don’t have to go searching for them! (You’re welcome. Yes, I’m a giver.)
But first, a great gift idea is hand-made hats and headbands. The seller, Liz, also has some lovely holiday ornaments and scrunchies (when and why?!?! did they come back in style??!?!?) for sale. But most importantly, proceeds from the sales benefit Jessica Diamond, a fellow (much younger) MEep who desperately needs surgery. (You can also donate directly to her campaign if you wish.)
The gift guides:
- Arthritis Life: Chronic Illness-Owned Businesses to Support this Holiday Season!; it’s organized into categories like ‘Exercise and Yoga Services’ and ‘shirts, mugs, stickers & more’
- Live with MECFS: Chronically Ill Holiday Gifts and Tips – also a bunch of links to other blogger’s gift guides
- My Migraine Life: 20 Gifts for Migraine Relief (hint, hint: I suffer from migraines!)
- Trend-Able: Trend-Able Holiday Gift Guide 2020 (organized by price; I personally prefer the things listed that are lower cost)
If you’re unsure, here’s a post on What NOT to Give from A Chronic Voice.
Even more fun: A Chronic Voice Christmas Giveaways! Thirty-four sponsor donated a BUNCH of cool stuff you can win, including yours truly – a scarf I hand-crocheted!
You’ll have to do one thing on the Rafflecopter to enter that particular drawing, then can do other things to increase your chances. (Sorry for the vague language; I entered just after the giveaway launched, and I can’t remember exactly how it works… but it’s fairly easy!)
Note: some of the items are location specific (i.e., I’m only going to send my scarf to the US; sorry, but shipping across the pond is too outrageous!; and some are for the UK/EU only; but some are worldwide!).
Sheryl Chan put this together, and she is an absolute ROCK STAR! It was difficult when I ran one giveaway on my blog when I was well, so I can’t imagine how flared she is from doing 34! And all the pretty images! And all the promotion!
I personally have entered and hope to win a painting from FKC You! Art, a Distance Healing Reiki Session from Goldstone Reiki, or a Huggaroo Hot/Cold Headache Wrap. You can also enter to win a copy of two poetry books, Sunshine and Shadow or Yarn by my MEep (who is also a friend, and who, fair warning, I suggested be in this giveaway) Hughie Carroll. (If you can’t wait, you can purchase his books on his site.)
Again, pop over to A Chronic Voice and Enter to Win! Drawings will be held on 12/22 and then Sheryl will inform the winners and givers.
Also, my friend Alice (who I featured previously), is recording herself reading A Christmas Carol for a bit of holiday cheer. So far, she’s recorded seven episodes of the classic book, which you can find on her youtube channel, Muffin Reads The Classics. She’ll be recording episodes throughout the month, so be sure to check back! Bonus – she’s from England, so has that marvelous English accent that makes everything sound a bit better.
Now on to the post! (Tho, fair warning, it doesn’t necessarily have some profound message or deep meaning, but I felt I should share what’s been going on in my life these past few months.)
My Dear Readers,
And as you may have noticed, I did not keep up my goal of publishing a blog post each month this year (I missed five months! – March and April, and then September, October, and November!) Some bloggers decide they need to take a break, and announce it – not me; my break was wholly unplanned. (I have made my goal of writing in my Gratitude Journal [affiliate link] almost every day this year, all but 15! [three days missed in the last week. Not sure why?])
I have been a bit better at posting a photo on my ko-fi page (an easy and inexpensive way to support me); I’m trying to post something every three weeks. It’s kinda fun to look through old photographs I never managed to organize, so I’m surprised by some of the lovely shots I’ve taken over the years.
A big THANK YOU! to the person who gifted me with two years of Ko-fi Gold, which allows you to set up monthly support. Gold also comes with some new exciting features, like a store, where sometime in the future, I hope to post all my remaining art inventory. I would be remiss if I did not also say thank you to a long-time monthly supporter, and to a new monthly supporter, Green goat poetry. (She’s just started the page, so there’s not much to see… yet!)
The months passed by…
August was my last blog post: I managed to publish my review of the anthology The Things We Don’t Say: An Anthology of Chronic Illness Truths [affiliate link]. (The anthology’s editor said it was “the most comprehensive” review she’d seen! Yeah, that’s my OCD for ya, the same reason it’s 5am, and I woke because I needed to pee and I was in pain, and suddenly a bunch of words appeared in my brain and I HAD to write them down, even though I desperately needed sleep. But I digress. As usual.)
September rolled around, and I had been working on a blog post about the long-term effects of the virus on some people who contracted it, who are being called “Long-Haulers”, people whose symptoms are practically identical to those experienced by people with Myalgic Encephalomyelitis (MEcfs), as I and other patients predicted. I had gathered a bunch of articles to share, and … I just didn’t have the spoons to finish writing it (or get very far, for that matter).
Which makes me feel guilty – there are people feeling lost and alone, who can find comfort and direction just from stumbling across my blog. (I know this because I’ve been told so.) Also, many of the articles I had saved to share are now out of date, even tho they are only a few months old! But here’s the most recent one I saved: Living With ME/CFS Is Hell, And Many COVID Longhaulers Are Experiencing It.
Part of my blog break? All of my doctors shut down for months due to the virus, and in August, they opened up again, and I couldn’t put them off any of the visits. In July, I had a mere three doctors appointments – my monthly appointment with my pain doctor, and two telehealth appointments.
Me and my new glasses. 11.25.2020
But then in August, I had seven appointments, all in person, to see my eye doctor and my eye specialist for glaucoma (I’d been supposed to see both of them in April!), my urologist, and my GI doctor. Plus, I started looking for new glasses – the ones I was wearing were from March 2017, so it was high time to get new ones. And boy howdy was that a Never-Ending Quest to Find Glasses! I looked online, I looked in stores, and I didn’t find any until late October, and didn’t get them until November!!! (Another aside: I wonder what happened to all those opticians who used to work at the “glasses-in-an-hour” place back when I was a kid…)
Then in September, I had a barium swallow test for my GERD (acid reflux), and an endoscopy. With those two stressful appointments, and all of the other ones, I was just too tired to write anything.
And I had to finish putting together my medical expenses for 2019 so I could write them off on our taxes. Yes, you read that right: 2019 taxes. We didn’t get them done until the second deadline of October 15, mostly because I had to organize all of it. (The amount of paper generated by having a chronic illness is staggering.)
October? I had ten doctor’s appointments that month, including an appointment with my PCP at his new practice to get established as a patient there, as he’d left his previous office in February.
Even more importantly, the 15th of October was my Mother’s 75th birthday. Our scattered family (in seven separate states!) couldn’t all be together in person, but by golly by gum I was determined that we would still celebrate that milestone for her.
Instead of working on a blog post, I spent all my spoons putting together “Party-in-a-Box” packages to mail to family with party hats, beads, and birthday buttons, so we could have a surprise Zoom party. And because I am just that way, I also designed and printed cards so everyone could write birthday greetings and memories to read at the Zoom party and send to her later. Of course, Mom got a special package with a fun birthday hat, her own beads, and an “It’s my Birthday” button [all affiliate links], while a local friend helped us get her a cake. HAPPY BIRTHDAY, MOM!
The Hope Plant continues to grow, and give me pretty leaves that are fun to photograph. 12.9.2020
And I think we could all use some hope right now.
I made it all the way through November – only two doctor appointments, one an emergency visit with my eye specialist. (Frustrating, especially since she has changed my glaucoma drops three times now, because the first two drops weren’t lowering my eye pressure like she wanted and screwed up my vision, so I still can’t see, even out of my new glasses!)
BUT, for the first time in a number of years, I made it to Family Thanksgiving with my husband, and I’m so glad I did. (Yes, it was a risk, but my husband and his sister both care for their parents, who don’t go anywhere, and my nephew’s college didn’t start, and my college-aged niece and her boyfriend got tested and were negative. So we thought if I could attend, it was important I go, so we could all spend time together.) (And big thanks to my husband and sister-in-law for making sure there was food I could eat.)
(Another aside: it’s a bit odd to discuss – with authority and knowledge – back braces and PT exercises and ice packs and health issues with my elderly in-laws, but like I’ve been saying, illness doesn’t discriminate. It doesn’t care how old you are.)
I also managed to finish reading and writing reviews for two books that discuss disability: Identity Theft: Rediscovering Ourselves After Stroke by Debra E. Meyerson, PhD with Danny Zuckerman (review on Goodreads), and an e-ARC of Raising a Rare Girl by Heather Lanier (review on Goodreads). (Although I cannot really recommend the first, I love the second one so much, I want a copy of my own! [all affiliate links])
Now I’m reading an e-ARC of The Puzzle Solver [affiliate link], by Tracie White. It is an important book that is about Myalgic Encephalomyelitis (MEcfs), and scientist Ron Davis with Stanford and the Open Medicine Foundation, working tirelessly on a biomarker and cure for MEcfs; and his son, Whitney Dafoe, one of the most severe ME patients. Read Whitney’s Facebook post about the book.
Art by Wonder Doodles.
Because of all of the above, I have been doing very little advocacy, which makes me feel slightly guilty, especially since MEcfs is finally getting noticed, thanks to Long-Haulers. However, our community is (for the most part) super supportive of each other, and we lift each other up. When one of us can’t, another does.
(Yet another aside: It’s hard to believe that my viewing of Unrest was three years ago, on November 30, 2017. As I posted on Facebook, “Three years ago today I went to see Unrest film and I met some wonderful people, other patients who know what I’m going thru. This day was a turning point in my illness – I found a community in #MEAction; I saw my experiences in a heart-wrenching film and began to realize I was not alone in my suffering; and I gained access to resources and research that allowed me to begin understanding what is wrong with me, and thus start getting the help I needed. And, attending this event made me a better advocate.” You can read what I wrote about it at the time in this blog post, “what is unrest“.)
And now, we’ve arrived to December, the (thankfully!) last month of 2020, and needless to say, I’m tired, y’all. This month of course brings other stressors – prepping all my 2021 files & planners for both electronic and paper; getting together Christmas presents for people (90% of which had to be shipped), and sending holiday cards (since I went on strike and didn’t send any in 2019; I still have to start this task). I especially want to send cards to my spoonies and MEeps who are generally ignored, and might not get any love.
And a HUGE stressor – the pain doctor I’ve been seeing since May 2016 is retiring, which means I have to find a new pain specialist. (My GP won’t prescribe my pain medication due to my “complex pain history”. Their words.)
If you’re not chronically ill and have never had to change a doctor, it is a one-way ticket to Anxiety Land. There’s the fear that I won’t be able to find a pain doctor close to my house who also takes my insurance; there’s the fear they won’t treat me at all (it’s happened before); there’s the very real fear of being dismissed and not listened to and derided (has also happened to me); and there’s the even bigger fear that they won’t prescribe the medications I have been taking since 2017 and that I need, just to have a tiny bit of a life, thus forcing me to taper or suffer withdrawals (either one being a strong possibility).
… the closing of the year …
Art by Meg Fabbri.
As 2020 comes to its terminus, it’s hard to think of a year that has been so strange and difficult, for basically everyone, at least in my half-century of life. We have faced unprecedented everything – a huge health crisis, toilet paper shortages, unemployment, an extremely important election, and other things. It’s a year that won’t easily be forgotten. (The only year that comes even sorta close is the year – was it 2016? 2017? – when an extremely high number of celebrities died.)
I know this year has been hell-bent on making everyone feel horrible and unhappy. It’s been isolating. It’s furthered the divide between ableds and the disabled, while also showing some people what those of us with chronic illness face every day in not being able to leave our houses or live a normal life.
In my case, except for the doctors who cancelled on me and then rescheduled – all at basically the same time – my life hasn’t really changed. I still go nowhere but doctors’ offices and still do nothing but what I can do at home, and still do my damnedest to stay in my energy envelope so I don’t crash. (I’ve not been doing a good job at that this past few weeks what with Thanksgiving and more doctors and holiday parcels and this blog post…)
And I would like to point out, as Lorna of Cream Crackered Blog did so succinctly on twitter:
Can’t believe I’m logging on to this app to say this again but here we are: becoming temporarily housebound during a pandemic as a physically healthy, non-disabled person is not the same as being permanently housebound because of a disability or illness. 1/2
— Lorna – Cream Crackered Blog (@lornamcfindy) December 9, 2020
And as Charis of the blog Being Charis says:
Anytime you see someone tweet “during a pandemic,” replace it with, “living while chronically ill.”
— Mx. Charis Hill ♿ (they/them) (@BeingCharisBlog) December 8, 2020
Hubs and I have been watching Supergirl on Netflix, and one of the messages it portrays is so apropos right now – that we are stronger together. That we should listen to our “better angels”, and not give in to despair or fear or feeling helpless.
And as the band Immaculate Machine writes in their song “C’mon Sea Legs” [affiliate link], an analogy that life has its ups and downs, just like living on a ship on the sea, and the only way to survive is to go with the flow, literally:
… you panic every time the boat starts moving! …
C’mon Sea Legs, pull yourself together
You’re gonna have to learn to like
The rockin’ of the waves, whatever.
C’mon down, it’s not meant to be easy
But you’re not gonna spend your life
Being sick over the side.
This message is reinforced by one of the meditations I listen to regularly, on the app Insight Timer, called “Finding Mental Stability” by Michelle DuVal of The Mindful Center. She says: “The best way to understand mental stability is to imagine yourself standing on a boat. If you stand too rigid, the first big wave will make you fall. You need to learn how to sway with the boat, sway with the waves, in order to keep your balance. Mental stability is like finding balance amidst the sway of the waves of life.”
Life isn’t easy, especially right now, but don’t give in. Find your stability by moving with the ups and downs of life, don’t give in to the sadness, and as they say on Supergirl, Have hope. Be kind. Show love.
with hope, love, and kindness, and of course lots of rambling,
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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.
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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 currently in their end-of-year giving campaigns and 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!
