I believe in staying indoors, at pretty much any cost.
Outside is too uncertain. Outside is too uncontrolled. Weather is outside. I will leave my house to be inside somewhere else. My favourite places are libraries, art galleries, cultural institutions, makeup counters, and coffee shops. Climate controlled inside is the literal best place for me to be.
It takes no effort for me to get dizzy. I lose my balance for no apparent reason. I get weird stabby-shooting pain in random places, and my hips/upper thighs are bruised from running into the corners of furniture and fixtures. An average Ontario summer’s heat and humidity has me hiding indoors for days and weeks at a time. The knuckle of my right thumb randomly goes numb throughout the day. This is an improvement (?) because it used be the whole thumb. My legs are stiff and awkward in the morning or after long periods of sitting.
Nothing about what most people would consider an average day is guaranteed for me. Will I still be able to walk today? Will I still be able to lift my arms over my head or stay awake for the next hour or stay awake at all? Will I go blind today? Will I be able to remember most of my words today or none at all? This is how I live, every single day. The not knowing shuts me down and keeps me from wanting to expend energy I might require to get through a shower tonight before bed. If climb that flight of stairs I might not have the ability to make it through meal preparation. If clean the bathroom, I will need to go to bed a half-hour early to have enough spoons to get through tomorrow’s work day. I can’t shower and leave the house on the same day.
My days and nights are constant calculations of what I can get away with right now that won’t adversely affect tomorrow. They talk in chronic illness circles about having enough spoons to get through your day and I count all the time. I can sometimes borrow spoons from tomorrow but that can have far-ranging consequences beyond tomorrow that I hadn’t considered. Any small injury I might sustain today, like pulled muscles or a turned ankle, could leave me unable to leave my house for a week.
Spoons rule my life. Trying to calculate the short and long-term consequences of every choice can be as mentally taxing as doing the thing I’m trying to do. Writing this story has a long-term cost to my physical health. I can’t write and walk in the same hour. I can walk but then I have to rest. I can write and then rest. I have to make something to eat, eat it, and then rest. If I have to think or move for periods of time, it must be followed by rest. The periods of activity are getting shorter and the periods of rest are getting longer, but my neurologist believes if I take vitamin D that will improve somewhat after a month or so.
I’ll start doing that tomorrow.
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