#MEcfs Awareness – and here’s what I’m missing

So, I’ve written about my chronic illnesses a lot. I even spent the entire last #AtoZChallenge (2016) writing about it, under the theme “dSavannah Defects” (aka things that are wrong with me), a category I’ve continued to use because, well, I like the name.

And I’ve spent the past week frantically tweeting and posting a BUNCH of articles & whatnot this week for #MEAwareness Month, and for the #MillionsMissing events that will be held today, this Saturday, May 12. (And a HUGE THANK YOU to everyone who has commented, liked, shared, messaged me, donated, and in some way encouraged me in this effort.)

But… I may not have spelled out for you exactly, in all its vulnerable detail, how it effects me (or is “affects”? My brain can’t figure it out.).  (Obviously, not writing this blog on a regular basis and not participating in the #AtoZChallenge is one example of things I can no longer do.)

I am about 95% housebound – leaving only to go to doctors’ appointments – and about 50% bedbound.

Inspired by A Journey Through the Fog, and her heart-wrenching story “Why do so many people still refuse to believe Myalgic Encephalomyelitis (ME) exists?”, plus the fact that it’s #MEAwareness Month, and today is our Global Day of Action, here’s a non-comprehensive list of things I am missing (in no particular order of importance). Things I can no longer do. Things that I could do without thinking. That I took for granted.

This is very embarrassing to share, this list of things I can no longer do. It’s depressing when I see it all written out like this. Looking at the “before” pictures in my images is bittersweet. And the “now” photo of me [at the bottom] is embarrassing and sad too.

I'm one of the #MillionsMissing - and I'm missing creatingCreating!

  • Writing poetry, short stories, and my never-to-be-finished novel (see a few examples of my writing in #FictionFriday)
  • Winning awards for my writing
  • Painting, drawing, and even simply coloring
  • Crocheting afghans (every new baby in my life got one, plus lots of friends), scarves, Christmas ornaments, and more
  • Making jewelry and playing with beads, especially special orders (like being given the directions “I want big, blue, and chunky” and it being exactly what they wanted)
  • Taking photographs with my nice camera (Nikon D60) hubs gave me one year for my birthday
  • Selling my creations in galleries and art stores
  • Having my art and photographs in art shows (included juried and members-only)
  • Being an active part of writing and artist communities
  • Attending art and writing classes and learning new techniques
  • Singing in my band

 

I'm one of the #MillionsMissing - and I'm missing my careerMy Career!

  • Helping promote artists, authors, and musicians, including right here on this blog through my The Questions series
  • Developing relationships
  • Mentoring young people
  • Teaching, even grading papers
  • Putting together PowerPoints for lectures
  • Developing class activities
  • Working with students to help them learn and grow
  • Mentoring even after they are no longer my students
  • Doing marketing (though I don’t miss managing events!)
  • Writing and producing advertisements, press releases, websites, and even memos
  • Doing graphic design and creating brochures and flyers
  • Taking the perfect photograph needed for any project
  • Knowing how to use the Adobe programs I used to teach (I just stare at them now, wondering why a photo won’t crop, when I’ve actually chosen the magic eraser tool or something else)
  • Having press releases I’d written be published verbatim in newspapers
  • Designing, writing, coding, and maintaining websites
  • Helping small businesses and authors develop their brands via my freelance work
  • Fundraising from individuals, companies, and grant opportunities for non-profits
  • Editing – it used to be my superpower, and I’m mentioned in a bunch of acknowledgements because of my work on them! (such as A Splintered Dream by Chuck Walsh), and even have a few books dedicated to me
  • Helping authors find their own unique voice
  • Designing and writing others’ Resumes and helping them find jobs

 

I'm one of the #MillionsMissing - and I'm missing my friendsMy Friends & Being Social!

  • Watching the young people in my life grow up (I have young relatives I’ve met all of once)
  • Going on adventures, to anywhere, planned or not
  • Going hiking
  • Poking around antique stores
  • Visiting galleries and art stores
  • Eating at nice restaurants
  • Attending theater performances, art shows, and concerts
  • Traveling
  • Volunteering
  • Helping others, whether by lending my talents or by donating money or by promoting them in some way
  • Visiting bookstores
  • Attending booksignings
  • Snuggling and being intimate with my husband
  • Visiting and helping my in-laws
  • Going to the movies
  • Throwing parties
  • Going to writers groups
  • Traveling across the country to visit family
  • Holidays – I actually ended up sleeping through the family Christmas dinner last year

 

I'm one of the #MillionsMissing - and I'm missing LIFE

My life!

  • Earning my own money (I haven’t been able to work since December 2014; that’s why I chose that date as my “Missing since”)
  • Donating to worthy causes and people in need
  • Going shopping, even for groceries
  • Cleaning the house
  • Doing laundry
  • Sweeping
  • Fixing meals
  • Cleaning the stove
  • Reading lots of books and reviewing them (tho I still remain a member of the Amazon Vine reviewer program)
  • Watching “educational” TV and movies and documentaries
  • Easily following complicated plot lines in books and TV shows and movies
  • Lifting weights and exercising
  • Eating whatever I want without fear of getting ill
  • Driving my car and playing music and singing along
  • Leaving the house without fear of terrible post-exertional malaise (PEM)
  • Opening car doors
  • Being able to open medication bottles and not drop them
  • Being dependable
  • Doing what I say I will do
  • Riding in the car for more than five minutes without severe, sob-inducing pain
  • Making plans and actually being able to do them
  • Not feeling excruciating debilitating pain every second of my life
  • Being able to wear my cute clothes and shoes
  • 25 of the 40 pounds I’ve lost
  • Having pants and clothes that fit
  • Being able to wear whatever I want without the textures causing me pain
  • Waking up without being in tears from the pain
  • Being able to work in the yard and pull weeds and have a garden
  • Not having to weigh every single action I make and decide if my body can handle it and if the “payment“ will be worth it
  • Feeling like a productive member of society
  • Believing that if you get sick, a doctor can help you
  • Being able to walk the dog around the neighborhood, or take her to a park or the beach
  • Getting out of bed without thinking about it or it taking forever or having to force myself to move through the pain
  • Going out to eat – or to do anything outside the house – on the spur of the moment
  • Bathing, showering, shaving, grooming, etc. without having to lay down for at least an hour if not more afterwords, and doing it more than once a week
  • Lifting anything that weighs more than 5 lbs, and sometimes, lifting anything at all
  • Moving without gasping
  • Waking up refreshed
  • Doing anything that needs doing
  • Having more than one to two “usable hours” on an “ok” day – and only having at most three “ok” days a week
  • My quick mind and ready wit
  • Not having to understand medical terms and symptoms and illnesses
  • Not being a “science experiment” (in other words, having to try all kinds of medications and treatments in the hope that something will help me)

 

I thought about putting the “why I can’t” after every single item – but it would make this post incredibly long(er), and be very very repetitive.

Essentially, I can’t do any of these things because I never know how doing will affect (effect?) me, in three major ways: exhaustion, fatigue, and brain fog.

Every single movement, no matter how small, causes me pain, as I wrote about in the post “imagining pain away (or, it don’t work that way)”. The pain is always there – sort of like a background hum – that never relents, but sometimes it’s worse than others. And doing anything, no matter how minor, can make it flare.

And doing anything causes bone-crushing exhaustion. Or muscle-crushing. As someone wrote in response to a facebook post (I apologize, I can’t remember who to give them credit), it’s like my body is a piece of metal and the earth is a giant magnet. (Yes, I am flaring in pain AND crashing in exhaustion right.now.)

My reflexes are slow, my vision has degenerated and it’s like I’m looking through a grey shroud, my body shakes on the inside so much I drop things and crash into the wall. Sometimes the tiniest sound can cause an amazing amount of pain sproing throughout my body. Sometimes I have to stay in a darkened room because I can’t tolerate the light. Sometimes I have to stay out of the kitchen entirely because the slightest smell of anything can trigger an attack.

I forget words. I speak slowly, like I’m trying to learn English, as I try to figure out what I am trying to say. I can’t concentrate on books. I can’t follow the plot. I can’t remember simple things, like why I stood up. Or if I took my medication. Or if I fed the fur-children.

This is what Myalgic Encephalomyelitis (MEcfs) looks like, and what it steals from us.

This is what I’m Missing.

I'm missing, but persisting

PS. If there aren’t errors and repetition in this post, I’d be very surprised.

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
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4 Responses to #MEcfs Awareness – and here’s what I’m missing

  1. Aunt Ruth says:

    Praying for funding, respect, insights for treatment (s) & stamina for all involved/affected. Props to you for doing what you can & not merely giving up. Props to your sweet hubby for living out the for better OR Worse in health AND Sickness part of your wedding vows. You know I wish I could do more. Consider yourself hugged. Love R&co

  2. Lisa says:

    dSavannah, hello! I think we used to ‘talk’ on Facebook but I’ve disappeared because I’ve gotten too sick to handle Facebook. But I’ve thought about you and wondered how you were doing. I’m so sorry to hear how bad it is. I can relate to so much of what you wrote. I too had to shelve a book I’d been working on for past year and a half because I had a decline and could no longer write. I have progressive ME so slightest thing makes me sicker. The future is scary so I work hard not to think about it and the past is bittersweet because of how I used to be. And well, we know what the present is like. I couldn’t attend the protest but had a pair of flip flops there with my name etc. And before and after pictures. This disease has dramatically changed my physical appearance- my skin, hair posture, the lack of even a little makeup and the cute and pretty clothes I used to wear. The worst is a dramatic decline 3 years ago that snuffed out the twinkle in my eyes. They look so exhausted and dead. And people, the rare few who see me think I look so normal! I’ll stop ranting. It’s good to hear your voice.

    • dSavannah dSavannah says:

      The future ~is~ frightening. I am holding on to hope that my efforts – and those of everyone else – will not be in vain.

      I forgot to mention in the post I didn’t make it to an event either, so I missed that too. I felt my time would be better spent doing the social media blasts. But my sign and shoes were in CT, CA, and Atlanta. :)

      Many hugs!

      PS sending you an email as soon as I can.

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