It’s 6:00 a.m. The steroid alarm goes off in under five hours, so I’m forced
up, sitting on the balcony, listening to bird song. Bird song to me. More
likely musical warnings from the birds to stay the hell away from their tree. It’s
cool and misty. The spring leaves are glorious in soprano green.
And I’m cranky.
Lately, the meds and the lack of any kind of upward curve in
symptoms disappearing is getting me down. One hopes, almost expects, that it
would be steady road towards improvement, but the side-effects of eight months
of medical genius are not quite that cooperative. Makes sense, really. Like
trying to recover from the effects of lying in the trenches of WW1 under gas attack
and then following with a visit to Chernobyl.
Oh yes. I am grateful to be above ground. Seeing I have no
experience with the other.
At first, I was so
grateful for that, it pushed all the other little stuff out of the way. Now,
nearly nine months later, I find this limbo state difficult. I never know, day
to day, what to expect. Monday, I’ll get up and barely be able to wobble to my
feet. My vision goes out. The world looks like a triple-exposed photograph and
my feet can’t feel the floor. Never mind the way-past-mature-memory lapses and
cognition impairment. Tuesday, I slide to sitting position when I awake and,
strangely, all that is nearly gone. I’ve learned not to count of Wednesday,
though.
I try not to whine. To you or myself. But. It is frustrating
beyond belief not to be able to plan a day ahead. If I make a date for company
at home, will I be reeling to answer the door, bumping into furniture? If I’m
brave and make a date for outside of home, can I walk 50 feet without
staggering?
Small chores, absolutely including mental ones, are often
totally exhausting. I can do them but
I’m apt to sleep off the fatigue for hours afterwards. Focusing my mind,
through the radiation burn and meds, is like running the Olympics some days.
Yesterday, I finally gathered enough will to start applying
papier mache over my plastic radiation mask. Not having the energy for
creativity turns out to take energy. The mask is huge and I plan to cover it in
all kinds of whimsical and meaningful images, and with beads, naturally. I’ve
had a good time thinking about all the good skills and memories that are tucked
up there in my beleaguered brain. I figured I’d start gathering some of them in
visual form before I forget them.
I apologize for the long silence. I know some of you drop in
to the blog to check on me and find it disconcerting when there’s a long gap.
For my friends – Wendy has a list, should anything dire occur. You’ll be
notified. For now, I’m still above ground and not at least having new side
effects. But I may go quiet for spells, depending on whether it’s a Monday or a
Tuesday.
Love to all.
4 comments:
I'm glad you're above ground. And I'm wishing you more Tuesdays than Mondays.
((hugs))
Here's to metaphorical Tuesdays!
Illness is a grind. Then you discover something that's off the effing charts.
There aren't words to make it easier, or better. I hope today is good.
Thinking of you often.
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