Stops and starts

when chronic illness demands its dues, you give it color

One thing I’ll never get used to is the way chronic illness moves me like a marrionette in stops and starts.

My medications need to be adjusted regularly, but it’s not a set time, it’s a question of how I’m managing, the levels of energy I have, a variety of other symptoms. Blood tests are sometimes helpful, sometimes not because too many things are at play, also they’re expensive. Which means I have to wait to get progressively worse until I know for sure that I have to make the adjustment.

One day of feeling unlike myself, even a whole week is not enough to know for sure. Even in my best periods I have bad days. So I have to pay attention and figure out if it’s a regular not ok or it’s a serious not ok. I never guess in time because, actually, there’s not way to, although I keep hoping that I will.

Adjusting medication is also tricky because it has to be done slowly, and it takes time for me to come back to the fragile equilibrium that keeps me functional. When I’m like that every task is the size of an elephant I’m forced to drag around. I stop having any ideas or enthusiam of any kind. Which means I can’t keep up with everything I have on my plate. I cut out all but the essential, which is work (because I have to eat) and a little bit of creativity, stunted as it is by my body’s weakeness. Writing is out of the question, it demands too much of me. But I did manage to draw a little.

Here’s what I produced while I wasn’t myself:

one in a series of little creatures of colour

sometimes rolly pollys are enormous and quite flat

when I’m sick, I’m like this critter, lost and kinda out of place, looking washed out

over the pastels I try to finish because they aren’t so nice to work with I sometimes allow myself to layer really soft pretty ones that make everything pop

at least he’s got a little hat

yup, just like that, confused as hell

but also dancing in my head

in the midst of chaos, I play

and let the words I read have parties in my head

I dream of building enough muscle to never be afraid again

before I melt into more chaos