#MEAwareness: My Story for #MillionsMissing

The timeline of actions from The #MEAction Network.

Today, Wednesday, 5/12, is the virtual #MillionsMissing2021 global event at 12pm PST/ 3pm ET, 7pm GMT, 8pm BST! They promise 20+ speakers and videos, and a very exciting #MEAction Study Announcement. Hope you are able to attend!

#MEAction has asked that patients share their stories today, calling them “one of our most powerful advocacy tools”.

But before I get started: If you don’t know why the event is called #MillionsMissing, it’s because “Millions are missing from their careers, schools, families and communities because of this disease. Millions of dollars are missing from research and clinical education. And millions of medical providers are missing out on the proper training to diagnose and help patients manage this illness.” (Quote from #MEAction’s #MillionsMissing page.)

And the reason May 12th is the primary day of advocacy? The day was chosen because it’s the birthday of famous nurse Florence Nightingale. (Apparently her parents forbade her from studying nursing. Can you imagine if she had obeyed them?)

As I wrote in my post It’s #MEAwareness Month back in 2018, it’s highly possible that Ms. Nightingale also had MEcfs – she was in Scutari, Crimea in the mid 1850s, where she contracted what they called “Crimean fever”, and she never recovered. By the time she was 38, she was completely bedridden. Yet, she managed to continue her advocacy and important work teaching about health care. Amazingly, she lived to be 90 years old.

I have shared parts of my story here and there on my blog over the years, including in the posts Mourning the end of an era, and #NotEnough4ME, where I wrote about losing my career; Looking back (again), where I summarized 2019 and talked about some of the things I miss a lot; Brain fog and birthdays, where I mused about turning 49 and how much has changed in my life (and hard to believe I’ll be turning 50 in a two short months!).

Many of the posts I wrote about my illnesses are tagged with the category #dSavannahDefects, a phrase I created and used as my theme for the #AtoZChallenge2016. As I wrote in the Theme Reveal post, I made up that phrase because:

The wordsmith in me is delighted that “defects” can be both a noun or a verb. In this case, it’s a noun. I wish it were a verb, that I was defecting to a {mostly} deserted island that served perfect health and scrumptious desserts. More specifically, my topic covers the issues with my health: the invisibility of my illnesses, what’s wrong with my well-being, the crap with my constitution, the fail in my fitness, the ick in my infirmities, my malaise and my maladies, the distress of my disorders (and defects), my dang decrepitudes, and my doldrums and deliriums.”

But what’s my story?

It’s hard to know where to start! But in short, I’m a disabled, full-time Sick Person / #spoonie, and have been since Dec. 14, 2014, my last day of full-time employment.

This is the first year I felt like I could spend the money to buy myself a #MillionsMissing t-shirt. I took this photo about a week ago (and clearly I need a haircut! but I’m waiting on my hair stylist to cut my bangs, since I wasn’t able to go to my last appointment!). I look far worse now, since I’ve been running myself ragged this week…

The long version: I was sick before then, in what us #MEeps call a ‘gradual onset’; however, when I first started to decline (sometime in 2011), we didn’t know what was wrong with me. We didn’t know why doing things would cause me pain, weakness and lethargy, or why some days I couldn’t get out of bed, or why the back spasms and joint and muscle aches I’d experienced since childhood had worsened to near-agony levels.

We also thought maybe it was “just” depression – something I’ve fought since I was about ten years old – except I had many careers and was very accomplished and busy, despite my mental health (and looking back, I know depression doesn’t cause most of my physical symptoms). I had been a:

• marketer – I did marketing and PR for 20+ years, primarily for non-profits, anything related to either discipline: branding, strategy, graphics, copywriting and editing, websites, press releases, press relations, advertising, event planning, collateral development and design, being the boss. You name it, I probably did it. I also did freelance projects where I’d work with small businesses and non-profits.
• college instructor – I taught part-time as an adjunct instructor in the Business/Technical Programs Department at the local community college in Arkansas, and served on their Business Advisory Board. I then taught full-time as an instructor at the largest university in my state in the Communication Department. (This was also my last job.)
• artist – I made scarves, paintings, bookmarks, and jewelry. My art was in galleries, and I sold it on my website. I’d often have commissioned special orders. Since I sold my work, I’d say I was a semi-professional artist.
• photographer – besides my own photos that I liked to take of weird things, people often asked me to take their photos! So, I did! I even had a solo exhibition of my photography. (You can see some of my photos on Facebook in the album A Photo a Day 2013, which ultimately I didn’t complete… because I was too ill.)
• writer – I wrote poems and short stories, and had a few things published back before I focused on my marketing career. I even had a book published in 2012! (I have a few copies left; if you’d like to purchase a signed one, just drop me a comment. Since I was contracted and paid to write the book, I get no royalties if you buy it from another place.)
• editor – many, many books have my name in them, thanking me for my editing skills, not to mention the millions of words of marketing things I edited.
• bibliophile and reviewer – I used to read 80 to 100 books a year, in many genres (tho mostly YA, women’s lit, and sci-fi/fantasy). I always always carried a book with me. I was a member of the special, invite-only Amazon Vine program, where I got to review all kinds of things, not just books! (That is, until they took away my membership because I was reviewing too slowly.) My reviewer rank was in the top 5,000!, but as of right now, it’s 14,768 (out of alllll the reviewers on Amazon!) [affiliate links].
• singer – in a band; we only lasted about two years, but we had fun playing in local spots in Arkansas.
• volunteer – if someone asked me for help, I’d generally say yes: I’d plan and work at events, I’d create the marketing materials for them, I’d sort clothes, I’d do whatever was needed.

But all of that came screeching to a halt when I finally “broke” during my last job teaching. Along with it, my identity disappeared. I had always determined my worth by what I did and could do – and all of that was stripped away. Stolen.

I lost my independence. I lost many friends. I lost my income, and all my savings, and went into medical debt trying to get well. (And I truly thought I would figure out what was wrong, and I’d get better!)

I saw many, many doctors, of various disciplines, many of whom refused to treat me, some of whom just passed me off to another doctor, some I’ve lost because they changed practices or retired, some of whom actively harmed me and disparaged me, and a few who help (all in alphabetical order; plural means I saw more than one): acupuncturist, allergist, chiropractor, endocrinologist, ENT, family doctor, gastroenterologist, geneticists, holistic and integrative medicine, life coach, massage therapists, mental therapists, neurologists, ophthalmologist, optometrist, orthopedic doctor/surgeon, pain management specialists, physical therapists, psychiatrists, psychologist, rheumatologists, rieki practitioner, speech language pathologist, and urologist. (Note: I HATE new patient paperwork with a burning, fiery passion.)

I’ve had vials and vials of blood drawn, and ultrasounds, MRIs, CT scans, x-rays, micro-fiberoptic endoscopic examinations (i.e. a camera shoved down my nose to look at my throat), EKGs, echocardiogram, nerve conduction study, endoscopies and a colonoscopy, a barium swallow, nasal swabs, saliva tests, allergy tests…

Between 2013 and the end of 2020, we’ve clocked 13,379 miles going to medical appointments (according to my yearly spreadsheets where I track everything). (I could probably figure out how much money we’ve spent, but that would be harder, and very depressing.)

If you combine all the diagnoses that have been added to my charts over the years, there are over 100. (I know of 87 specific ICD-10-CM Diagnosis Codes, because I’ve copied them from my medical records into my medical history document that I take to every appointment.)

My primary ones are Myalgic Encephalomyelitis with neuroinflammation [dx #G93.3] / chronic fatigue syndrome [dx #R53.82], fibromyalgia [dx #M79.7], and a bunch related to spinal issues, such as spondylosis with myelopathy [dx #721.1], scoliosis [dx #M41.9], and intervertebral disc degenerations [dx #M51.36].

I also have laryngopharyngeal reflux [dx #K21.9], costochronditis [dx #M94.0], and primary open angle glaucoma [dx #H40.1131]. (I could go on, because there are many many more, but I think that’s sufficient, and your eyes probably glazed over before you got to G93.)

All of those diagnoses boil down to two primary issues: severe fatigue and high levels of global, random and never-ending pain. And if I do too much (like I’m doing right now), I will suffer (and am suffering) post-exertional malaise (PEM), i.e., my symptoms are increasing. (You can read my description of PEM in this 2019 blog post.)

Because I’m doing waaaay too much right now, I’m in a lot more pain than usual – my eyes feel like cinders in my skull, my shoulders are burning, it feels like there is a migraine in my lower back, my wrists and arms throb, and so are my legs and ankles. And my head hurts from wearing my glasses so much. Sheer adrenaline and stubbornness are keeping me at my computer.

On Saturday, PEM will hit me like a tidal wave (a cliché that I never would have let one of my writers keep in their manuscript, but I’m too tired to think of anything else) and I will crash – I will be unable to do anything, anything at all, except go to the bathroom, which is a few feet from my bed – and I will likely be that way for a long time.

Other symptoms I experience include (but are in no way limited to): brain fog (and sometimes it’s so bad I call it “brain smog”), where I forget words and what I’m doing, or have comprehension issues, and can’t get my brain to work at all; insomnia and sleep issues, for which I have to take five different meds and supplements, just to get any sleep, and even with those, I wake up every two to three hours; gastrointestinal issues; aphonia / voice loss for varying periods of time (so annoying! and frustrating! not being able to communicate); sensory sensitivity, when light, smell, sounds, and/or movement can cause nausea and actual pain, and I have to avoid them all by hiding in my dark bedroom wearing my noise-cancelling headphones and an eye mask (symptoms which, by the way, means I won’t be able to attend today’s global event, nor was I able to attend Tuesday’s Artist Salon – the sound, light, and unexpected movements will be too much for me to process); and weakness such that I can’t carry a pitcher of water, much less open the car door.

I take 12 different prescription medications and 16 different supplements a day, some of them multiple times per day. I’ve tried many many more of both than I can count, and like most patients, have a “graveyard” of bottles filled with things that don’t help or give me terrible side effects. I’ve had shots in my spine, my sternum, my shoulder, and in a few weeks, my hip.

I have 12 two-inch three-ring binders filled with bills and paperwork from seeing all those doctors, four giant notebooks filled with the notes I’ve taken at each of those appointments (otherwise, I’d remember nothing), and six mini-size legal pads detailing all the calls I’ve had to make.

I’ve read practically jillions of medical papers and articles about my diseases (which is funny, considering I’m a hippy-chick-artist, not scientific at all! and my only Cs in college were my required science courses – everything else was As and Bs). I’ve consulted with numerous other patients to get ideas on treatments and learn what I might expect. (Other patients have been far more informative and knowledgeable than the vast majority of doctors I’ve seen, and have provided far more actionable things I could do.)

And we have no idea what caused me to become so ill. Unlike many patients, I can’t point to a virus I had on a particular date that I never recovered from. We know I have 13 genetic mutations out of the 30 genes tested; ; we know I have adrenal fatigue; we know I have hypermobility syndrome (or hEhlers Danlos Syndrome); and we know I have chronic Epstein Barr Virus with a very high viral load that has not responded to treatments (and no idea how or when I got it). But what triggered my MEcfs? No idea.

A long while after first becoming 100% ill, I accepted that I’m disabled and got a disability parking placard. And far later than I should have accepted it from my doctor, got a rollator [affiliate link] – basically, a walker on wheels – to help with mobility, and give me a place to rest should I need it if I happen to be out (very rarely do I go anywhere but a doctor office). (Aside: you wouldn’t believe how inaccessible doctors offices and medical buildings are for mobility aids: no room for your rollator or wheelchair in waiting rooms, examination rooms, or bathrooms; doors so heavy you can’t open them while using either; main doors with malfunctioning disabled buttons; grab bars in locations that no human could actually use… It actually boggles the mind.)

I fought for disability benefits, which I never wanted to apply for, and never thought I’d actually need – a fight that took me five years, and that I only won after three appeals (including two hearings in front of a judge). Oh, and my Social Security Disability Administration file included 3,377 pages ~prior~ to my final hearing.

My husband is my caregiver. He does basically everything for me: driving me everywhere (my vision has degenerated so much, I can no longer see to drive), grocery shopping, cooking, cleaning, taking me to doctors’ appointments (and in many cases, sitting in and answering questions from the doctors), picking up meds, doing the yard work, rubbing my back when I’m in pain, taking care of our four pets (two cats, one dog, one turtle), dealing with the trash and lawn care and all the million and one things required for daily living, and sometimes even helping me bathe! Not to mention that he takes up the slack financially, since as I’ve discussed in the post Being ‘brave’ (actually, I’m angry), disability benefits are very small, and a far cry from what I made before I got sick. (And, I had zero income for over five years.)

As my husband wrote in a Facebook post this year in support of #MillionsMissing:

I’ve been a caregiver for someone who has suffered from ME/CFS since 2013. It’s been devastating to see such a brilliant, vital, and productive overachiever become nearly completely sidelined by this mysterious disease. It’s been heartbreaking to watch her health decline, despite throwing every ounce of energy we have at turning it around.”

We never expected for that to happen, a mere five years into our marriage – which means he’s been my caregiver longer than our time as equal partners.

We can’t go on adventures like we did in Arkansas before I got ill – spontaneously getting on the road and driving and exploring wherever we ended up. We can’t go antiquing, or poking around bookstores (okay, that one’s for me. He just tolerates it.). We can’t go to concerts, or plays, or museums. Even if we could go to a nice restaurant, which we can’t, there are very few “safe” places I can eat since many can’t accommodate my food allergies (primarily gluten, among others; and lots of restaurants think that offering a burger without a bun means they have a gluten-free menu. It does not.). The last movie we saw in the theater was Wonder Woman (2017). It’s hard to have any sort of physical intimacy – his hand on my leg for just a few minutes can cause a horrible pain flare. The guilt, like Elke mentioned in her guest post, is sometimes overwhelming.

I am rarely able to see my elderly in-laws (who hubs cares for as well!), and they are only a 40-minute drive away. I don’t get to see my cousin’s kids, or my nephew, or my grand-kid-by-proxy (a bestie’s grandchild) grow up. I’ve missed birthday parties and graduations and other important days (long before quarantine times!). I can’t travel; more than five minutes in a car and I’m in excruciating pain. I haven’t taken a vacation since… I’m honestly not sure. 2010, maybe? I haven’t been to the beach (my heart home) since December 2017.

My life – our lives! – are completely different than we ever imagined.

Now I use my skills to help other patients: by writing this blog, by listening, by giving ideas, by making them laugh. I lost my purpose, but thankfully, with #MEAction and other #spoonies, I found another.

As my husband said in the closing of his Facebook post:

[My wife] has been a tenacious advocate for those who suffer from ME/CFS. I would say she’s been a tireless advocate, but it literally takes everything she has just to blog and post about the issue. Recovery from the exertion is long and difficult. May is a particularly difficult month because it’s MEAwareness month, and this is her mission these days. The cost is great, but helping others is worth it. She’s reached many, and made such a positive difference in their lives.”

I am dSavannah, and I am one of the #MillionsMissing.

The set of posters I first created for #MillionsMissing in 2018. And it’s all still true.

The video from Chronic Market, that I mentioned in Monday’s art post, is ready! Check it out on Youtube – over 30 artists with ME/CFS from 13 countries contributed imagery and a phrase responding to the prompt “What would you do if you were well tomorrow?”.

Come back tomorrow to read a guest post from another MEcfs patient, this one a letter to long-haulers. If you haven’t already, be sure to read the other three posts I’ve published this week: #MEAwareness: You Are Not Alone, #MEAwareness: Artists with MEcfs, and #MEAwareness: Guest Post – My MEcfs. Also, I can’t believe it’s only Tuesday (as I write this). It feels like I’ve been at this for a month.

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Your support keeps me going, even in tough times. Thank you for stopping by my blog. And be sure to let me know if you see an error or if something makes zero sense! After all, this is the fourth blog post I’ve published in as many days!