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…