ME is exhausting, not only for those of us who have it, but also for our families, friends, doctors. They weary of broken plans, of being unable to form plans because we don’t know if we’ll be able to get out of bed tomorrow. Some of us can’t get out of bed at all.

People ask how we are. We have to decide whether to tell the truth and risk alienating the asker because they never hear anything positive from us or to lie and risk offending the inquirer who knows we are lying.

I’ve been told that anyone who doesn’t want to hear the truth of my condition isn’t worth my time. That is not true. Nor is it always possible to replace people. I can’t nor do I want to replace my family. Having ME makes it impossible to get out to meet new friends, especially in this world where almost no one wears a mask and getting COVID/long-COVID would worsen my condition.

Finding a doctor who is accepting new patients has become an almost a pipe-dream. Finding a GOOD doctor who will also believe I have ME, who understands anything about ME, is an unlikely goal.

The patient in the video has one person who supports her. How many of us have no one who will do that?

From Mirame Arts:

We have produced a short film about #MECFS patients‘ prejudices. The film shows artistically how the disease isolates patients by breaking even their closest bonds through a lack of understanding from friends, partners, and relatives.

Director: Béla Baptiste

Camera: Edward Bally #WorldMEDay #mecfs #mecfsawareness #mecfsawarenessday

Yes! Less competition, more coöperation! Let’s work toward systems where everyone can participate and be successful.

I’ve told my doctors that I feel like a hot potato, tossed out of hand as quickly as possible, always someone else’s problem. What I want them to say is not “I can’t help you,” but “I don’t know how to help you now, but I’ll actually read through all the materials I asked you to research and bring to me and I will talk with my colleagues about their experiences with patients like you. When I go to a conference, I will choose to listen to panels devoted to the topic of chronic illnesses and I will get in touch with the few centers that specialize in treating patients with ME/CFS and ask them to I information and training.”

I know doctors are burned out and weary, that insurance companies make it exceedingly difficult for them to give most patients the care and attention we need, but what else are we supposed to do but ask for their partnership in our attempts to get better?

One doctor just throws you to another doctor and it is an endless cycle

I don’t often share personal rituals or photos of altars, but this moment feels timely. Tonight I call on Eirene, goddess of peace.

“How far peace outweighs war in benefits to man; Eirene, the chief friend and cherisher of the Muses); Eirene, the enemy of revenge, lover of families and children, patroness of wealth. Yet these blessings we viciously neglect, embrace wars; man with man, city with city fights, the strong enslaves the weak.”

I chose my mother’s Rose of Sharon flowers as offering, because though she loved beauty and desired peace, she never could find either. My incense is gathered from 5 regions of Greece, foraged and stolen by me last fall. The candle is white, the only color I never make because I usually work from the other end of the spectrum, so a cheap ikea candle dressed in herbs of Hekate pulls the weight for grieving mothers and lost souls. Peace be with you.

May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.

You can help by re-blogging and/or liking this image.

Happy and safe Pride Month!

Here’s a spell even I could cast.

beauty is inherent in the human form 🐚 you are born of love

I think that something that a lot of people will never understand is how hard it is to be someone who is chronically ill. I have POTS and EDS (Ehlers-Danlos Syndrome). I am constantly in pain and feeling shitty. I have a very mild set of chronic illnesses and yet I never stop feeling bad. I will never feel good again. It is so hard to try and stay positive and keep living my life the way I want to, because I so desperately want to have a normal life where I go to work and stay active all the time and take as many classes as I want to be able to finish college as soon as possible. I mourn the life that I should have been able to have, I grieve for my poor aching body that is slowly deteriorating beneath my skin.

I am trying not to let my illness define me. But it is so hard when I am grieving for a life that I should’ve had.

writer of Schlockmercenary on having long Covid

here's to us

it's healthcare

For many of this, masks are still necessary. When you choose to wear a mask, you open up another bit of space where we can exist.

besties

It takes an enormous percentage of our energy to perform normalcy, but people often take that performance as proof that our conditions aren’t real or that we are exaggerating the effects our illnesses have on every aspect of our lives.

It’s not disease we’re faking; it’s health.

I’ve seen the Ursula K LeGuin quote about capitalism going around, but to really appreciate it you have to know the context.

The year is 2014. She has been given a lifetime achievement award from the National Book Awards. Neil Gaiman puts it on her neck in front of a crowd of booksellers who bankrolled the event, and it’s time to make a standard “thank you for this award, insert story here, something about diversity, blah blah blah” speech. She starts off doing just that, thanking her friends and fellow authors. All is well.

Then this old lady from Oregon looks her audience of executives dead in the eye, and says “Developing written material to suit sales strategies in order to maximize corporate profit and advertising revenue is not the same thing as responsible book publishing or authorship.”

She rails against the reduction of her art to a commodity produced only for profit. She denounces publishers who overcharge libraries for their products and censor writers in favor of something “more profitable”. She specifically denounces Amazon and its business practices, knowing full well that her audience is filled with Amazon employees. And to cap it off, she warns them: “We live in capitalism. Its power seems inescapable. So did the divine right of kings. Any human power can be resisted and changed by human beings. Resistance and change often begin in art. Very often in our art, the art of words.”

Ursula K LeGuin got up in front of an audience of some of the most powerful people in publishing, was expected to give a trite and politically safe argument about literature, and instead told them directly “Your empire will fall. And I will help it along.”