Daily life in Tokyo

MS break

My most recent painting was about a month ago, because I've been entertaining guests from overseas, adjusting to a new multiple sclerosis medication (holy moly, the shakes and tomato-red flushing!), and trying to keep up with healthy habits and mindset while battling fatigue and new symptoms. It's a huge task to stay stable in the storm of brain fog and anxiety: is this my MS acting up? or just the meds? am I ever going to be able to paint again? will I still be able to walk next week? am I thinking clearly?

Luckily, things seem to be settling down now. I had time to edit the footage from that painting, and after I catch up on some housecleaning and errands that I have been too weak for, I should be ready to paint again in the next few days.

This disease is hard!

When I'm having a great health day, I tend to make overly optimistic plans for the rest of the week, and then at the end of the week, instead of feeling happy about my accomplishments, I get an earful from my inner voice complaining about everything I didn't do.

So, one of the ways I've tried to adjust my mindset is to imagine my to-do list as an accordion or hoberman sphere. I now try to line up a week's worth of tasks, but I don't fill in arbitrary deadlines (clean the house by Tuesday, finish two paintings by Wednesday, upload a video on Friday...) because I will probably need to stretch out the timeline a bit. What I once could have done in one week might take just a week if my health is great, but it could take up to three weeks, due to rest breaks and/or fatigue days. But that's okay! Because I'm still getting things done. I make art. I take care of myself. I enjoy my marriage.

It's a tricky business to lower your expectations without also feeling like a failure, but it can be done. With kindness and gratitude. 

You should only listen to your inner voice when it says helpful and constructive things.

Update: My husband and I just had an entertaining conversation about how the hoberman sphere fits into the above analogy. The timeline as an accordion makes sense because of the two-dimensional distance, but how does the 3-D sphere fit into that? For me it's a visual representation of a concise, ordered week exploding into a month of clutter that fills up my mind and workspace. He says he'd be 100% on board if it were a hoberman accordion...?