Pain's Timeline
Saturday, 25 October 2025 10:55 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
crashmarguliesI'm thinking a lot recently about what kind of schedules my disabled body and mind can keep. What sort of frequencies are feasible, and for what kind of activities? As pain symptoms progress and cognitive difficulties/brain fog continue unexplained by medical tests, the answer to this is often "not frequently" and "not much."
My best friend, NIBF, has severe ME/CFS. I try to visit in person once a month after we went nine month without seeing one another (a lots-of-reasons consequence of Hell Move out of our former shared living space). I've made it since making that commitment, so June, July, August, and September; but I had to cancel today for October, and I'm not sure when I'll have a chance to reschedule. We even had a virtual rain-check planned--but my body had other ideas, and I spent this morning alternating between crying on the Cat House living room floor trying to reset my pelvic joints and in the bathroom, where my guts were upset by my swollen pelvic joints.
My friends in witchcraft spaces, both in person and in the witchcraft Discord I host, have also been talking about schedules: new moons and full moons, solstices and equinoxes, the so-called esbats or crossquarters. When is a holiday, and when can it be celebrated? How important is it to follow cycles in our magical practices that we don't follow regularly in our lives? The vibe we come to as a loose group of peers is essentially, if it doesn't work for you, don't do it. But it's definitely brought to my attention how many structures of time don't work for me.
I can't be depended on to do much regularly. Getting myself to do anything daily beyond eating, smoking, toileting, and taking pills ONE TIME seems to be asking too much. I can't even promise that I sleep once every 24 hours, or am awake a regular chunk in that same time period. Doing things once a week is too frequent for me, as I need two or three days after almost any Planned Task or Gathering to recover. But stretch it out to once a month and suddenly there is an Obstacle in my calendar which requires preparation on one side--to conserve energy, to regulate my sleep schedule as much as I can, to do everything I can do to manage pain and symptoms for The Event--and recovery on the other. My once-a-month, 4-hour-and-bike-ride visit with NIBF is actually a week or more out of my time.
This makes me feel, to be frank, terrible. If I cannot be reliable, what can I be?
I don't have an answer for that at the moment. Right now, the only reliable thing in my life is that I'm forced to take things day by day, hour by hour, moment by moment, like a recovering addict. But I'm not in a battle of wills with my mind at all, just the pain in my body, the limits of my tolerance.
What will I do when the pain takes up all the space and there's no room for me anymore?
My best friend, NIBF, has severe ME/CFS. I try to visit in person once a month after we went nine month without seeing one another (a lots-of-reasons consequence of Hell Move out of our former shared living space). I've made it since making that commitment, so June, July, August, and September; but I had to cancel today for October, and I'm not sure when I'll have a chance to reschedule. We even had a virtual rain-check planned--but my body had other ideas, and I spent this morning alternating between crying on the Cat House living room floor trying to reset my pelvic joints and in the bathroom, where my guts were upset by my swollen pelvic joints.
My friends in witchcraft spaces, both in person and in the witchcraft Discord I host, have also been talking about schedules: new moons and full moons, solstices and equinoxes, the so-called esbats or crossquarters. When is a holiday, and when can it be celebrated? How important is it to follow cycles in our magical practices that we don't follow regularly in our lives? The vibe we come to as a loose group of peers is essentially, if it doesn't work for you, don't do it. But it's definitely brought to my attention how many structures of time don't work for me.
I can't be depended on to do much regularly. Getting myself to do anything daily beyond eating, smoking, toileting, and taking pills ONE TIME seems to be asking too much. I can't even promise that I sleep once every 24 hours, or am awake a regular chunk in that same time period. Doing things once a week is too frequent for me, as I need two or three days after almost any Planned Task or Gathering to recover. But stretch it out to once a month and suddenly there is an Obstacle in my calendar which requires preparation on one side--to conserve energy, to regulate my sleep schedule as much as I can, to do everything I can do to manage pain and symptoms for The Event--and recovery on the other. My once-a-month, 4-hour-and-bike-ride visit with NIBF is actually a week or more out of my time.
This makes me feel, to be frank, terrible. If I cannot be reliable, what can I be?
I don't have an answer for that at the moment. Right now, the only reliable thing in my life is that I'm forced to take things day by day, hour by hour, moment by moment, like a recovering addict. But I'm not in a battle of wills with my mind at all, just the pain in my body, the limits of my tolerance.
What will I do when the pain takes up all the space and there's no room for me anymore?
