May is #MEAwareness Month • #MillionsMissing

Dear Readers,

No, your eyes do not deceive you. I have indeed published my May post on the 1st of the month, instead of the 15th. (Will there also be a blog on the 15th? That remains to be seen, as I’m having a really hard time coming up with what to say for this particular post. Seriously. I have no idea what to write.)

But there’s a very good reason for publishing this early. May is Awareness Month for my disease, Myalgic Encephalomyelitis (MEcfs), and May 12th specifically is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) (per the May 12th International Awareness Day website), and International ME/CFS and Fibromyalgia Awareness Day. Thus, I am publishing this post now, with the hope that you do what you can to help boost the signal (as they say).

Last year, I spent my time doing online advocacy – I created and shared four “missing” posters, featuring old pictures of my healthy self, along with three photos I staged and took of my empty shoes and clothes, to show what I was – and am still – missing:

I wrote and published four blog posts that week, and had a guest post about a month later (and please go read them!):

• It’s #MEAwareness Month – and please act!
• #MEAwareness: Let’s talk about funding
• #MEAwareness: What a Crash looks like (with video of me during a bad crash)
• #MEAwareness – and here’s what I’m missing (and I still am. So very much)
• #MEAwareness: Guest Post on Life with ME

I also spent every waking usable minute doing fierce online advocacy by finding and sharing links to personal accounts on blogs, magazine/newspaper articles, scientific articles, advocacy organization posts, and pretty much everything I could find that was tagged with #MillionsMissing on twitter and facebook, plus retweeting and sharing what others had written. And that caused me such severe post-exertional malaise (PEM) that I crashed. Hard. I didn’t even start to recover for three weeks.

This year, I do not have the cognitive strength to do all of that again. I am going to share links and stories as much as I can, but at the first sign of a ‘nope’ from my brain or body, I’m going to stop.

And this year I am putting aside my fear and what little vanity I have left to share current pictures. The four images below, with not-so-flattering photos of myself, were ones I created to share what I really look like these days.

Thank you to Char at Chronically Hopeful for giving me the courage to do so, and for creating my personalized 2019 #MillionsMissing poster. If you need one, click my poster right here to hop over to her blog and request your own; she’s making them until she can’t anymore:

I don’t like to put current photos of myself on social media. Because who wants to see someone who doesn’t look well? Who wants to see something so depressing? I certainly don’t! But this is my reality. I wake up crying most days because the pain comes rushing back into my body. I have to spend the vast majority of time cocooning myself in my dark bedroom whilst wearing noise-cancelling headphones and an eyemask to avoid sensory overload. And I spend most of my time in bed, with my kitty Piper as my “nurse”. This is my truth:

I will share as much as I can from my bed, and I hope to attend one of the #MEAction Georgia events on May 9 [East Atlanta Village] or May 11 [The Big Chicken], but who knows how I’ll feel?! (Oh, and if you’re in the area, please stop by!)

Getting dressed and brushing my hair and riding in the car (five minutes and I’m in agony!) exacerbates all my symptoms, yet I have to do it quite often to go to doctor’s appointments.

And today, Friday, April 26, is one of those days where everything, and I do mean everything, seems insurmountable☼. Someone in the neighborhood is running a leaf blower, and the sound is like a physical assault, but my noise-cancelling headphones are charging, and hubs’ headphones are on the floor on his side of the bed. It’s not as simple as getting up to grab them; it takes a huge amount of effort to lift my torso from the pillow, then heave my legs onto the floor, then stand up, leveraging my body against the wall, then creep around the end of the bed whilst holding onto the wall or footboard, every step a jolt of pure agony, then bending down to pick up his headphones while simultaneously not collapsing onto the floor. And then doing it backwards to get back in bed, and settle myself on my pillows, and place the blankets over me.

Going to the bathroom is a similar effort – all of the above, plus the eight or so steps to the bathroom, plus leaning against the wall to pull down my PJ bottoms, and then gingerly sitting onto the toilet without pitching face-first onto the floor.

My poor husband has had to fetch me ice packs and water and food all day (thank you, darling), and informed me that I left the almond milk on the counter. From when I crept to the kitchen – a few hours ago – to take my meds! head-desk

This is what ME has done to me: it has robbed me of even the ability to do basic care for myself, much less go to the grocery store or call a friend. I never ever ever expected this to be my life. That my life and career and friends and talents and hobbies would be stolen from me so cruelly. ME has turned me into a sobbing wreck of a human, dealing with non-stop suffering.

Last year, on 5/13/18, I wrote this post on Facebook:

I’ve spent the last week fiercely advocating: writing my own 4 blog posts and sharing as much as I could about this horrible disease I suffer.

Jennifer Brea, director of Unrest, and Co-Founder / Volunteer Executive Director of #MEAction, called our efforts “radical, dangerous activism”.

It’s dangerous because of the harm we cause ourselves for the greater good.

It’s dangerous because of the pain and cognitive dysfunction, the crashes and flares that can make us worse, and that we might not recover from.

I woke this morning in tears, the pain signals from my body shaking my brain. The pounding in my head. My joints and bones feeling like they’re full of ever-thickening sludge. Eyes burning and unable to focus. Stomach churning. Hands throbbing and tingling and inexplicably cold. Stumbling to the kitchen to take my morning meds. Going back to my bedroom to lay down, step by aching step. And finding no comfort: the pressure of the bed and blankets on my parts of my body making them throb.

Staring at my phone, grasping for the right words to say here. Stuttering when I talk to my husband, unable to even say a full word. (It has taken me two hours to write this.)

But I have to hope that my small voice, raised with all the other patients and families and advocates, will help.

And I do it for Emma (Norway), age 9, sick three years, who said “ME is like a butterfly chained to a stone.”

How to Help:

• donate to the Open Medicine Foundation, led by Ron Davis, Stanford’s professor of biochemistry and of genetics – and read the very recent article First diagnostic test for chronic fatigue syndrome identified. (You have no idea how much hope this gives me!)
• or donate to SolveMECFSInitiative, who also focuses on research and looking for a cure
• or donate to #MEActionNet, the organization spearheading the #MillionsMissing campaign
• if you haven’t yet, watch Unrest to see more of what I deal with every day of my life; it’s available on Netflix (and I still haven’t been able to watch it since I saw it in Nov. 2017; it’s too difficult)

You can also share my blog posts, images that Char and others have created (ME Awareness Pictures and #MEAction Network on twitter are a couple places to find them), and the factsheet written by #MEAction.

You can also do all the things suggested in the post How You Can Help The Millions Missing Worldwide.

Thank you to everyone who has sent me encouraging notes, telling me that what I have written has helped them, and that my words matter. That I matter.

And thank you to the person who gifted me another book by Charles de Lint, along with a lovely coloring book, both off my Amazon wishlist.

And to whoever gifted me the year’s worth of Ko-fi Gold, I am truly stunned and amazed. Thank you for believing in me. I am starting to explore how to best use this gift, but among other things, it will allow people to support me with a monthly donation.

☼ It’s truly ironic that today, when I’m ready for “what makes you stronger” to get on with the other bit (i.e. “what kills you”), is the day the words came to me.

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 four years, and I get no disability benefits – and my medications alone cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah
• by donating via paypal
• or sending me something from my Amazon wishlist.

Your support keeps me going, even in tough times. Thank you for stopping by my blog.