May 12th International ME Awareness Day

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THIS IS MY BLOG – I’M SUPPOSED TO TAKE A STAND TODAY

This will be short: I am working on graphics (slippery things). I ENJOY graphics. I’m behind.

Names matter: CFS, ME, CFIDS, and the now horrible SEID

But it saddens me. Today is the day chosen (by whom?) as ‘my disease day.’

And most people won’t even know what that stands for.  What the hell does ‘myalgic encephalo…’ even mean?

And ‘ME’ as an acronym sucks. It makes it sound as if I’m even more self-centered than I already am (by necessity – and I hate it).

I have what I prefer to call by one of its original names, CFS – Chronic Fatigue Syndrome.

Even though that seems to trivialize it, because we all know everyone is always tired, at least it points out one of the main symptoms, a crushing fatigue that never goes away, and reduces the life of the person who has it to a constant calculus of ‘how do I make the little energy I have go far enough for me to have a bit of a life?’

The Calculus of Energy

If I go for a 15 min. bike ride, will I still be able to make progress on my cover for Pride’s Children? I don’t know – can’t take the chance today.

But if I get too severely deconditioned, I may not be able to make much progress anyway.

Always calculating, always short.

Twenty-five years of this crap. And half of doctors STILL don’t even believe it exists. If they could walk but ONE day in my shoes…

I guess today is my day for self-pity. I’ll see if I can arrange a bit of time and energy for that.

Living in the spaces between

Meanwhile, I have graphics to do. Slippery things.

And nasty things to think about medical research, the CDC, the NIH, and all those useless doctors.

Don’t pity me. It could be even worse.

Believe it or not, I am a cheerful person, and even though I have to work hard at that, it is definitely worth the effort.

None of us get choices, except how to live with what comes our way.

Say a prayer. Or cross your fingers. One of these days…

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11 thoughts on “May 12th International ME Awareness Day

  1. Alice Audrey

    I have enough energy now that I rarely feel fatigued. Probably because my arthritis sidelines me before I ever really get going. But when I was in my 20’s I suffered from a bone-deep fatigue that left my friends all scratching their heads and accusing me of being a party pooper. I learned to always have my own form of transportation because if I went with a friend I would end up in dire straights before they were ready to go home. Just thinking about those days makes my arms ache and my breath seem inadequate.

    It was about the same time that I learned to never ever give a doctor the full list of what is wrong with me. Generally about half way through the list they would put their pens down and give me “the look”. From then on I was guaranteed they wouldn’t take me seriously on anything. To this day I wish I had an “auto-doc” that would run tests for me without question and let me figure out what is going on by myself.

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    1. Alicia Butcher Ehrhardt Post author

      Do you remember what you finally did to feel better?

      I agree about doctors – but then they are operating as if that’s all that is wrong with you – I agree: an expert system would work far better, and the patient could fine tune it before seeing the doctor.

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  2. Pamela Spichiger

    Alicia, you are so talented. I always read your comments in HH and enjoy. My heart hurts for you that your talent is being gradually taken away because of these horrific diseases. I admire your tenacity at keeping up with your talents. Pamela

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    1. Alicia Butcher Ehrhardt Post author

      As everyone always does, I try to make the best of what I have.

      We all face these choices – ours are just more draconian.

      If I added up all the time I spend staring at the wall…

      But I won’t let this THING take any more of me than I have to. Thanks for reading! And the kind words.

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