Constraints
I've written about this before, and I'm writing w/o looking at the prior post(s)
The metaphor generally used is "spoons", but I hate that, because 1. it's visible/discrete and 2. assumes people know/can see
Forget about other people knowing/seeing, which isn't the point. Sometimes I don't even know
But the point I want to make: I know I have constraints.
- Diarmuid (his needs)
- Stuart (his health)
- my pain
There are supports for D, and for Stu we have an idea when certain things will hit, but sometimes it will come from nowhere, and for me I'm always in pain but it's a matter of degree and when I'll hit a wall. I just never know when it will hit. I can sometimes go for quite a while.
and sometimes I can collapse
the last time I really collapsed was 2015. Before that 2010. The reason I generally don't collapse in that way now is I can tell when I'm at the edge and I don't push it. 2010, I had no clue. 2015, I was at a conference and enjoying myself so much that I didn't pay attention to my going over the cliff.
This is to say I went to sleep at 5pm yesterday (and got up at my usual 3am). that was pretty sweet (yes, I woke up a few times during the night, that's usual)
but it does mean I have to be brutally honest w/ myself about what I can and cannot take on.... and to do things in spurts when I can. I'm best early in the morning. Because nobody else is awake. I can do things with nobody in my way, and nobody interrupting me.
I generally just do things while I can and then often just have to drop everything. My issue isn't fatigue or weakness. I have plenty of energy per se, and my muscles are strong enough. But anybody who has nerve pain knows there's a point where it's nothing but the pain and at least I can just make myself sleep. I don't know - it's not fatigue per se, but I just tire of the pain and I go to sleep. My brain shuts down. It's much better than other options, and it's better than collapsing.
The metaphor generally used is "spoons", but I hate that, because 1. it's visible/discrete and 2. assumes people know/can see
Forget about other people knowing/seeing, which isn't the point. Sometimes I don't even know
But the point I want to make: I know I have constraints.
- Diarmuid (his needs)
- Stuart (his health)
- my pain
There are supports for D, and for Stu we have an idea when certain things will hit, but sometimes it will come from nowhere, and for me I'm always in pain but it's a matter of degree and when I'll hit a wall. I just never know when it will hit. I can sometimes go for quite a while.
and sometimes I can collapse
the last time I really collapsed was 2015. Before that 2010. The reason I generally don't collapse in that way now is I can tell when I'm at the edge and I don't push it. 2010, I had no clue. 2015, I was at a conference and enjoying myself so much that I didn't pay attention to my going over the cliff.
This is to say I went to sleep at 5pm yesterday (and got up at my usual 3am). that was pretty sweet (yes, I woke up a few times during the night, that's usual)
but it does mean I have to be brutally honest w/ myself about what I can and cannot take on.... and to do things in spurts when I can. I'm best early in the morning. Because nobody else is awake. I can do things with nobody in my way, and nobody interrupting me.
I generally just do things while I can and then often just have to drop everything. My issue isn't fatigue or weakness. I have plenty of energy per se, and my muscles are strong enough. But anybody who has nerve pain knows there's a point where it's nothing but the pain and at least I can just make myself sleep. I don't know - it's not fatigue per se, but I just tire of the pain and I go to sleep. My brain shuts down. It's much better than other options, and it's better than collapsing.