Too tired to post about ME/CFS yesterday

Image may contain: possible text that says 'MYALGIC ENCEPHALOMYELITIS (ME) MILD ME 25% CAN WORK WITH GREAT DIFFICULTY AND AT LEAST 50% OF THEIR FUNCTIONALITY. MODERATE ME ARE HOUSEBOUND OFTEN REQUIRE A WHEELCHAIR OUTSIDE OF HOME. DAILY TASKS LIKE BATHING AND COOKING LARE A STRUGGLE. VERY SEVERE ME ARE TUBE FED, IN SEVERE PAIN, OXYGEN AND OFTEN CAN NOT SPEAK. SOME AWAY. THEY ARE SOME THE SICKEST PEOPLE ON EARTH. SEVERE ME BEDBOUND IN DARKEND ROOM ALMOST COMPLETELY DEPENDENT FOR ALL PERSONAL CARE. MEICFS AWARENESS @CHRONICALLYRISING'

MISSED EVEN WRITING A BASIC POST:

MAY 12th WAS INTERNATIONAL

ME/CFS AWARENESS DAY

So today, a day late and many dollars short, I’m boosting a post from @ChronicallyRising on Facebook, which will give you an idea of what I live with.

For over THIRTY YEARS now, I have been in the very badly mislabeled ‘moderate’ category – with occasional good days where I’m lucky if I have lost ONLY 50% of my functionality.

Because this is my daily reality, I don’t make a big deal about it.

I have used my experience with the disease

to write the on-going Pride’s Children trilogy, where I have gifted one of the main characters, Dr. Karenna (Kary) Elizabeth Ashe, with the ‘mild’ form – and explore how being chronically ill affects your whole life and all your choices.

When you lose your entire medical career, ‘mild’ is a misnomer.

Society writes you off; it did her.

She learned to write – something I’ve done. But I’ve given her a better experience and a traditional publisher in 2005. She’s turned into a reclusive but well-loved author of several historical novels, by spending ALL her energy on her work (since there is no way she can be a physician any more).

And living alone.

She is much younger than I am – in the ‘adult woman’ vague category.

And there’s nothing wrong with her – except disease and society’s expectations. And how much she gives in to them.

The world may find out

after covid-19 slams through its entire population, that the incidence of this kind of a post-viral, post-survival of the acute phase, syndrome, is far more common in the pandemic’s aftermath.

It is speculated that a large proportion of the survivors will have life-long problems. Numbers are not available this close to the outbreak.

Maybe my stories will help those who are ignored by the healthy, the researchers, and those who fund public health initiatives – until it happens to them.

We are all still people, still worthy, still capable of pain and loyalty and love.


 

18 thoughts on “Too tired to post about ME/CFS yesterday

  1. lmadden42

    Thank your for sharing your struggles and adjustments. After over a year of inconclusive tests from head to feet I had been given no diagnosis. Then, a physical therapist who was familiar my records causally referred to the difficulties of trying to exercise with CFS. I’ve gone over serveral websites, including the one I found from your post and the CDC website. It’s quite obvious to me that I have CFS. I’ve been adjusting as best I can, but having guidance and inspiration now that I know what’s up when I need two naps a day and can’t stand up for any length of time without feeling as if I’m being pushed or pulled to the ground. Recently the brain fog started to appear. That was scary. Now I feel better about it and all my symptoms. So thank you. Any suggestions you might have for other blogs specifically about writing while living with CFS would be greatly appreciated. My novel has been solved, simply because I haven’t been able to find time/energy together to keep on. I would appreciate any advice you might offer.

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    1. Alicia Butcher Ehrhardt Post author

      Sorry. I have no advice. It’s hard to get a diagnosis, and there is no treatment beyond symptomatic relief (assuming you find a doctor who will do that), and learning to pace and adapt.

      I wish there were more.

      There are many ME/CFS organizations, and several on Facebook – where you can often share and ask questions.

      There is a specific one, 20BooksAndME, for people who are trying the 20booksto50K method – writing lots of books – but have various illnesses including ME/CFS which makes it harder to write. If you’re on FB, you can ask to join if you like.

      There are SO many blogs, a google search is best to find some – but remember they are all anecdotal and unregulated. That’s what happens when medical ‘science’ has no answers.

      What do you mean by ‘my novel has been solved?’

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      1. lmadden42

        Aha! Brain fog again! Novel has been stalled. (I notice they sound similar. I didn’t know my fingers could hear! 😉

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  2. joey

    I don’t blog about my dueling arthritises often, either. I think it’s because I’m in the mild category. There are times it’s a real problem, but most days it doesn’t interfere. The osteo is more painful and limiting daily. I focus on the anxiety now and again, but really, I think the anxiety is heightened by the what ifs that come with autoimmune diseases. That’s one of those things I’ve failed to explain to those who aren’t afflicted similarly.
    I’m so glad you’re in the place now. I know I keep saying that, but I really am.

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  3. Lynda Dietz

    I’ve had numerous friends with fibromyalgia who say they never know if today’s the day they can’t get out of bed. As one friend put it, “I can do the same activity at the same level 100 times, and then the very next time, it will leave me bedbound for three days. But I can never predict it.”

    One of my editing acquaintances lost her younger brother to COVID-19 a couple weeks ago, and she said he was recovering from the respiratory stuff but his heart had been so taxed that it just gave up when everyone thought he was on the upswing. Another author friend who got it is still recovering after coming down with the symptoms in mid-March, being in and out of the hospital, and finally released home with help and oxygen. He says his stamina is shot, and he wonders if he’ll ever be completely well again.

    I absolutely loved Pride’s Children for the way you made everyone aware of the daily struggles and accommodations of someone who has a chronic illness, and yet I never pitied her. When you’re ready to release the second book, I’m already planning to reread it so I’m right in the middle of her story with Andrew.

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    1. Alicia Butcher Ehrhardt Post author

      Pity doesn’t help. But I want people to know one of the ways being chronically ill is, and how it both affects everything, and cannot be allowed to. Not easy.

      I’m hard at work on NETHERWORLD, which, as you might guess, puts everyone through H*ll. My beta reader just sent back Chapter 27 with the words that I am a ‘terrible, terrible woman.’ I love her.

      Liked by 1 person

      Reply
        1. Alicia Butcher Ehrhardt Post author

          I know, I know! What worries me is that people like to keep this one to themselves, which is the antithesis of recommending it to one and sundry.

          Nothing to be afraid of, right? People share what they like, right?

          I have that exact problem recommending Dorothy L. Sayes latter books where Lord Peter falls hard for a prisoner whose life he saves – and she turns him down.

          You have to be willing to follow the story through the British mysteries in the 1930s, and get a whole lot of details from odd places, before you realize that it is one of the most romantic stories every written. It is hidden. I love it – and I don’t think I’ve ever made a convert.

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        2. Lynda Dietz

          Hahahahahahahahaha

          I’m dying here. That’s so, so funny. This is the type of note I leave for my favorite authors when I’m editing. I’m glad you have a beta like that.

          Like

    1. Alicia Butcher Ehrhardt Post author

      It shouldn’t be the enormous deal that it is.

      But it is.

      Any time two people pair up, the calculus begins: What does she see in him? How did he get her? There must be something I’m not seeing.

      I remember reading that psychologists have studied how people usually choose someone of their own degree of PHYSICAL attractiveness – so when there is an obvious mismatch, the speculation begins.

      I USE that in Pride’s Children, it is one of the underpinnings.

      Liked by 1 person

      Reply
  4. Janna G. Noelle

    Fiction has always been an important way to help people understand challenging experiences other than their own – far less painful than have that experience themselves (i.e. what you mention about the aftermath of COVID-19). But some people are stubbornly determined to learn the hard way.

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    1. Alicia Butcher Ehrhardt Post author

      Some people only believe it if happens to them. Not necessarily a bad trait, but potentially a deadly one.

      It has been presumed by brain scientists that story is critical to humans exactly because of the ability to learn from others’ experience.

      But stories can and do LIE. Maybe some people have been fooled too many times to trust stories! Still, the ability to discern the difference, and choose when to experience and when to read/view sound much more of an advantage than either alone.

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