I have been sitting with this laptop open for what feels
like hours. I started writing, got a page in and stopped. I opened up my
writing file and looked at so many ideas, either waiting for a beginning, or
started and abandoned. The only thing I seem to be able to focus on right now
is the pain and lack of any energy. Also how much I love steroids, knowing I
can’t take any.
Steroids (Prednisone) seem to be my new best friend. With
them, I can almost pretend to be normal. I’m still limited on my energy stores
(think of it like a video game, when that energy runs out, you are done). I can
at least walk from one room to the next without feeling like I may pass out
from the exertion. I’m on day two of what I refer to as “a bad day”.
Everything hurts, I have zero energy and I just want to cry (I usually don’t, I
was raised not to throw pity parties for myself).
I would like to think that me writing about the only thing
that seems to be on my mind is at least knocking some of the cobwebs off of the
creative process. I want to write, but I’d prefer to be writing fiction. Doesn’t
seem like that’s happening though, so I’ll take what I can get.
I’m saving up my steroid usage for the next few weeks. Tessa
(my third child) will be graduating high school, so we have all of the
graduation festivities that I’ll need to find the energy for. I miss the days
of caffeinated drinks being all I needed for an extra boost of energy.
My two
youngest are all that live at home now. I know they say they understand when I
have my bad days, but I’m not really sure they do.I really don’t think anyone who hasn’t experienced this type
of debilitating chronic illness really understands. I know I didn’t.
I get lots
of advice though. Eat this, don’t eat that, take this vitamin or that
supplement. Exercise more, stand on your head, spin around whistling Dixie. I
know everyone always means well, but I really just want somebody to come clean
my house and leave me alone.
Okay, I think I’ve done quite enough whining, and to be
honest, just sitting here typing has worn me out (stupid, I know). I guess it’s
back to mind numbingly boring TV. I need a better hobby. Too bad it’s about the
only thing I can do, besides sleep, on bad days.
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