Hmmmm what should I not do today????

Not working full time is hard…I go stir crazy. But I have Lupus, so I don’t always have the physical energy to let out the stir crazy…hence the crazy.

A blessing in disguise I’m sure. The freedom to explore the things I truly enjoy in my own time, yeah ok. Downtime at my leisure…things start to get a bit blurry here…

You see, it would be one thing if I was happy to stay still, happy to stay home and laze about…pitter putter here, pitter putter there. Sure. Except that’s not what staying at home with Chronic Illness is like.

It’s about having all of this perceived time and freedom, but a fear of committing should my disease decide to rear it ugly head. It’s about having the time and space to decide what is really important; but actually what it feels like is careful how you spend your time so there are no gaps, no regrets.

It feels like pressure. Don’t forget, make your life meaningful and rich in these decided upon moments you allow yourself for you never know how long you will actually get to inhabit this body.

It feels like resistance from without and from within at the same time. Go outside and get some air, stay out of the sun though cause now your a vampire. Go get a massage and relax, but be sure they use nothing smelly and lovely and fun lest you break out in a rash. Go for lunch with your friends, except eat before you go because all of the bullshit fake stuff they actually put in food now is part if what got you here in the first place…forget it. I’ll have a black coffee and a nap please.

Don’t get me wrong…the course will be stayed and if there is a chance or choice or whatever this disease will leave my body and I will live normally and free once again. Join a ball team, go to the beach (during the daytime😉,) eat a cheeseburger, drink a beer. But for the time being, in the spaces in between…it feels sticky, externally imposed and all kinds of no fucking thank you.