dSavannahRambles

dSavannah note: This blog post is very very late (13 days, to be exact!), because of a couple reasons: 1) on Sat, January 11, thanks to my infinite brain fog, I deleted the 1,100 or so words I had written for this post, but then 2) the next day, with a huge amount of cognitive effort, I managed to recover it, but I wasn’t able to finish it; then 3) as I wrote in the mini post I published on the 15th and updated on the 16th, Important US disability issue needs your action NOW!, I have been very not well.

I’ve been extremely crashed, and I’m still pretty foggy; my brain is jumbled and my eyes are burning, but as I told one of my dear readers, I can’t really save this post for February. So, here you are. Please forgive me for any typos or things that don’t make sense.

And please, please, go read my last post if you haven’t already, read the proposed new rule on the Federal Register that would require proving disability every two years, read Matthew Cortland, Esq.’s guide to this issue on his Patreon, and submit your comments against the new rules before the updated deadline of January 31, 2020.

#NoSocialSecurityCuts!

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If you’re a regular reader of my blog, you might remember that the title of my January 2019 post (yes, just a year and a couple weeks ago) was “Looking back, looking ahead“.

Part of the reason for the similarity is that January is always a time of reflection – after all, it’s the start of a new year (at least, that’s what our culture tells us, but time is continuous and really just a construct, and concepts like “months” and “years” were developed to help us make sense of the world … But I digress. Per usual.).

Also, I’ve always been pretty horrible at writing titles or even short things (as I often say, there’s a reason I named my blog “dSavannah Rambles“!) – in college, I always made my assistant editor on the newspaper write the headlines. AND I acted like I was doing her a favor. (Maybe I was? Maybe it was a skill she developed while I never really did. Hmmm … )

But the real reason for the title is that as a person with chronic illnesses that will never ever go away, it’s really really difficult to look ahead. As the art shows, our Dreams and Plans may be big, but Life with M.E. is very small.

The only things on my 2020 calendar, besides birthdays (I like to send real mail, especially to my MEeps!, tho I have not sent any at all so far this year) are eight doctor appointments. (And I’ve already been to three. Many more will be added. For instance, I see my pain doctor once a month, and those are scheduled a month out.)

I can’t plan anything. Ever. My health always, always ruins any plans. (Even, as demonstrated, publishing a blog post.)

One particularly sad example: I planned on and really wanted to go to Christmas family dinner, but nope. This year, I woke up with a raging, horrible, painful migraine, overall body pain, and weakness such that I could barely move, so I missed it. Again. For the third year in a row.

I also didn’t send out a single holiday card, and only one gift (thus far, anyway! A couple things might wing their way out in time for Flag Day…)

Of course, looking back isn’t much better either. For reasons (that are too in depth to get into), I started keeping track of the main things that happen in my life.

The following happened to me during the 365 days of 2019:

• I had 9 visitors (people who came to my house to see me on days I could tolerate a person) – or, looking at it another way, I only got to interact with humans (other than doctors and my husband) a mere 0.02% of the year (that’s by the day; it’s an even smaller percentage if I figured it out by the hour instead!)

• I went on 23 outings (as in, leaving the house for something other than a medical reason) – 0.06% days of the year

• I had 27 showers (which I include, because as embarrassing as it is to admit, it also really demonstrates how sick I am! Because if I shower or bathe, it takes all my energy – that’s literally all I can do for that day.) – that means I averaged a shower every 13.5 days, a mere 0.07% days of the year

• I went to 58 doctor appointments with 18 different medical providers (don’t ask me how much time I spent waiting, but just believe me, it was a LOT)

• I had 159 crash days (which I define as days I can’t do anything but lay in bed) – that’s 43.5% of the year (if I was able to do a couple things, no matter how small, or if I was able to get out of bed, I didn’t define it as a crash day)

It can be depressing and soul-flattening to look at those numbers, to so starkly see how small my life outside my house has become, and how hugely my illness has impacted me.

It’s also difficult to look back and remember all the things I used to do, and the things I didn’t do as I was getting sick, like the writing and editing opportunities I missed because I just couldn’t do whatever was required.

Even happy memories can cause great sadness, like the awesome trip hubs and I took to California. Turns out it was our last vacation. In 2010. And there’s very little chance we’ll be able to do something like that again.

As the lyric I just heard for the first time the other day goes:

“I’ve got bruises on my memories …”

~Josh Kelley, “A Thousand Miles From Nowhere“, Under the Covers Vol 1 [affiliate link]. (Note: the song was written by Dwight Yoakam and released in 1993. So, maybe I have heard it before. But maybe not.)

Ten years ago, in 2010, hubs and I lived in Arkansas in a really awesome house situated on four acres on the side of a mountain. At night, we could see the Milky Way from our deck. By day, we could see the holler in the valley below us. The views were spectacular.

During the summer, all we could see was trees. In the winter, when the leaves were gone and the trees were bare, we could see maybe 10 houses.

We could hike in our backyard, losing sight of the house in mere moments.

Our home was filled with art and books and antiques and plants.

Most every weekend we’d go exploring all the little towns nearby. Or, we’d load up the dog and go to the river (the dog is not pictured above, but she was there; probably off sniffing something).

I had a thriving art career – my paintings and photographs and jewelry were in several galleries, and I often got special orders and was featured in the newspaper. My work was included in some special exhibits /shows, and I had a solo show of my photography. I also sang in a fun three-piece band, and we played coffee houses and the like around the area.

I had a great couple of jobs – doing marketing for a bank, teaching at the local college, and managing the 1929 Lyric Theater and the Ozark Arts Council.

I volunteered for a number of community organizations, including the Woman’s Book Club, a group founded in 1900 to establish and maintain a public library. Membership was limited to 35, and someone had to die for you to be invited to join. I became secretary. I also founded and ran a writers’ group, and we hosted literary events.

So what happened? you’re probably wondering. Heck, I lived it, and I still ask the same thing. These may or may not have contributed to me becoming a disabled spoonie (a concept created by Christine Miserandino), but I had stomach surgery to correct my severe GERD, then a year later, I had a hysterectomy to remove my very-screwed up uterus. I lost my primary job at the bank, and couldn’t find a new job to replace it. We moved back to Georgia to be closer to family and more job opportunities for me. I had a hard time finding a job, so did a bunch of different things to make money: secret shops, petsitting, etc.

And I got Sick. (Even though I denied it at first.)

One of the first things MEeps ask each other is: “How long have you been sick? Was it instant or gradual onset?” About half of us know to the minute when they got ill and never recovered. I’m in the other half – I had gradual onset, where my symptoms slowly worsened over time. (Someday, I need to write my Illness Origin story, but I was definitely ill before we left Arkansas; we think my ME and fibromyalgia may have been triggered by the surgeries, and the ‘final straw’ was my job as a college instructor, which I wrote about in last month’s post, Mourning the end of an era, and #NotEnough4ME.)

It’s scary when I compare my physical function now to five years ago, when I “broke” and became a full-time Sick Person. Back then, I could still drive. Not now. Even if it’s just a couple miles from my house, in an area I’m very familiar with, it’s dangerous for me to drive. (Reasons include I can’t turn my head very well; I get overwhelmed with all the noise, light, and movement; just sitting in the car causes excruciating pain, and the movements needed to drive cause even more pain; and my vision is messed up and degenerated, particularly my depth perception.) So I don’t.

I don’t go shopping; I don’t go to parties; I don’t see people unless they come to me. I don’t go anywhere or do anything. My life is very small.

And I’ll be honest – it’s difficult not to become bitter at life and everything that has been stolen from me by Myalgic Encephalomyelitis (MEcfs). But as so ably shown in the Sundance show Cleverman (available on Netflix; such a disappointment it was cancelled), if you let it, bitterness can consume you.

Although bitterness and sadness can sometimes overwhelm me, I try not to live there. And I try to be grateful for every good thing that happens and everything that I’m able to complete, such as: in 2019, I managed to do the things I said I hoped to do in that January blog post I mentioned at the top of this one: at least one blog post each month (check!), and writing in my Gratitude Journal [affiliate link] every day (tho in truth I forgot to write anything on two days, but considering my brain fog and cognitive problems, I think that’s über impressive!)

And, I plan to continue those two traditions in 2020! (Also, my 2020 Gratitude Journal was a gift, which makes it even more special.) (Of course, I just noticed I forgot to write in my Gratitude Journal one day so far this year … on a Crash Day, so I guess I’ll give myself a pass – even tho I’d managed to write in it on all previous Crash Days in 2019!)

So – maybe I am looking ahead, just a bit?

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New section: 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).

So, I’ve decided (took me long enough!) to add a section to each blog post where I include some of those articles I discovered during the past month, ones that particularly spoke to me. (Note: there are many many more wonderful blogs, but I just can’t share them all. Apologies to my #ChronicIllnessBlogger family!)

• A very well-written and accurate (and sad) story on Australian Broadcasting Corporation (get your tissues ready) – How chronic fatigue syndrome, also called ME/CFS, left Tony Wallace a shell of his former self

• An older article, but still relevant: Laura Hillenbrand on writing, chronic fatigue syndrome and moving on | Stanford Medicine

• Thought-provoking article by Angela Blanchard (a writer new to me): “Let go of rage and practice loving detachment, for your own sake and your community’s“

• Info from Cream Crackered Blog: Gigi, a teenager in Lewisham (UK) suffering from severe ME was forcibly institutionalised and accused of having Pervasive Refusal Syndrome. Thankfully she is doing a little better just now and has set up an Instagram account to document and share her experiences.

• Victory! 6 Major Federal Wins for ME/CFS – email news from Solve MECFS Initiative

• Super Pooped: Adventures for the Exhausted writes What no one tells you about being Housebound, which I couldn’t have said better myself

• On Bald blogger, Hairless Hannah: Dear Body, a heartfelt plea to our “ugly giant bags of mostly water” (as human bodies were called on the episode “Home Soil” of Star Trek: The Next Generation) to work with us instead of punishing us for every little action (and please, please, I’m begging my own body, please don’t make me feel worse for finishing up and publishing this blog post!)

I was very sad to learn on Sunday, January 12, that Kat, one of the bloggers I follow, passed away the day before. She advocated for mental illness, specifically Dissociative Identity Disorder (DID), sharing her experiences with the condition, and her life with 18 alters, on her blog Our Collective Life.

GNU to Kat, as well as Jaime, James, the communicator, Carole, Dream, Jodie, Jack, the Littles, and all the other alters in her system. (*GNU is from Sir Terry Pratchett’s Discworld series, and a way of memorializing someone has died. The gif above is a clacks message stating “GNU Kat and the alters”, generated on the GNU page.)

Her friends are raising funds needed for Kat’s funeral. Please consider donating (via this gofundme campaign) if you can.

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DESPERATELY NEED HEALTHY CONTROLS for NIH study –

Southern California and Ithaca New York

[copied] Join a study of exercise capacity & activity level in healthy, inactive adults made possible with funding from Grant number U54NS105541 NIH. The recruitment of ME/cfs participants is on hold because of lack of healthy controls.

Who is eligible? Healthy, low-active adults between 18-70 years. Perhaps someone who sits behind the computer all day and does not have a regular exercise program.

Who is NOT eligible? Smoker, or stopped smoking less than 1 year ago – Pregnant or breast feeding – Diabetic – Have a metabolic, cardiovascular and/or neuro-immune disease – Have an orthopedic limitation that prohibits cycle exercise

What must you do?

• Have a phone call with us to determine eligibility for the study – about 10 minutes.
• If eligible, meet with your physician or our physician for clearance to participate in the study. During this meeting, urine and blood samples will be collected. You will not be charged any fee to be examined by our physician or for the blood and urine tests. Takes about 60 minutes.
• Complete questionnaires about your health/medical history and physical activity level. Takes about 60 minutes.
• Complete 2 exercise tests on a stationary cycle separated by 24 hours. Each test requires 8-12 minutes of exercise. A small amount of blood will be collected from your arm before and after each exercise test, and a single drop of blood from your fingertip before and after each test. The total test session is about 60 minutes per test.
• You will wear a wrist watch device for 10 days before and 10 days after the exercise tests. It takes about 5 minutes to learn how to use this device.

Where is the testing being done? Ithaca College in Ithaca, NY or at the ID Medical Office in Torrance, CA.

What will you get? If you qualify as a subject, you will receive $200 upon completion of the study. You will get a report of your exercise test results, and how your test results compare to others who are your age and sex. This will provide information about your aerobic fitness level and baseline data for starting an exercise program if you are interested in doing so. (dSavannah note: also my undying gratitude.)

How long will this take? The total time commitment for participation in this research study is about 4.5-5 hours, not including travel to and from the testing site.

How can I sign up or get more info? PDF document with details

• For Ithaca, NY area contact Maria Russell at 607-274-7948 or MECFSstudy@ithaca.edu
• For Torrance, CA area contact Jared Stevens: 209-599-7194 or info@workwellfoundation.org

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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:

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 over five years, and I get no disability benefits – and my medications and supplements alone cost me more than $300 a month (or at least, that’s what it cost the last time I had the energy to figure it out)!

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!
• by donating via paypal
• 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).

THANK YOU! to all the people who sent items off my wishlist for Christmas! I always feel really guilty when I hit the “purchase” button for another round of supplements, because they are so expensive! (but also incredibly necessary to give me a teensy quality of life), so thank you to everyone who helps lighten that burden for me. And also thank you to everyone who sent books to fuel my book hoarding habit.

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 have also decided to become an affiliate for my web hoster, Lyrical Host. I switched to them last March, and I am continually blown away by how awesome and helpful and kind they are. Their service is so impressive! (And remember, I have been working on websites since 1996!) 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!

And finally, 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!