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corvaxgirlI don't often talk about what it's like for me when I'm in a flare up, because I'm concentrating on just trying to function. But here is a play by play:
8:15a - alarm goes off
8:35a - get out of bed. If Jow is home, great. He can help me get dressed and save some spoons. He can find me socks and put my bracelet on for me and hook my bra. Can only wear "easy" things - pull on pants, sweater, uggs. Brush teeth, brush hair, take (3) pills.
8:50a - drive into work, listen to NPR. The cold is a problem, it's flaring me worse.
9a - put on space heater which helps a lot. Do work stuff.
11a - Start feeling tired. Need to push through the day, because no time off and bills are due. Have trouble focusing on work because it feels like low grade flu symptoms - a little fuzzy headed, tired, achy, etc.
12p - Realize that food smells weird and tastes weird like it sometimes does. Shove some down. Still smell weird smell.
2p - Having trouble sitting in chair. Try to get comfortable, not possible.
2:30p - Can't ignore the extra pain* anymore. Have to push through.
4p - Leave work. Had to stay late to make up lost day.
4:15p - Assess spoons when at home. Realize yoga not likely. Massage = hurty. Brain too foggy to write. Brainstorm? Hack off bits of a story? Maybe. Can manage sewing and tv. Try to stay hydrated. Every time I get up, I will likely need help.
5p - Jow makes dinner. Hopefully, hot buttered rice. Had to Peapod this week, too tired to manage grocery shopping.
6p - Can't go out. April will come over and keep me company for a bit.
7p - Can't help with housework or putting away groceries. Feel listless and agitated and oh yeah pain.
8p - Jow packs my lunch for me. Figure out spoon/shower situation. Sometimes, I don't have enough spoons to shower. It's too hard to stand that long and the cold is too hard on my body. I have elaborate non showering rituals: washing my hair (if really spoonless, just my bangs and just shampoo) in the sink, using cucumber cleaning cloths, scrubbing my nails, cleaning my ears, deodorant, etc.
9p - Five more pills, telly.
10:30p - Mala, see if Jow will read to me to calm my brain down. Can't manage reading too much on my own. Trouble getting to sleep. Uncomfortable in bed, even with memory foam. Brain racing, so tired can't sleep.
11:30p - Sleep
Lather, rinse, maim until the flare up ends.
* This is an issue because (a) who really likes extra non consentual pain? and (b) sometimes people will genuinely try to be sympathetic about it, which is kind but the issue is they usually say something along the lines of, I'm so sorry you're in pain. :( Which is met by a puzzled, . . . .but I'm in pain all day every day? The abnormality here isn't the pain, it's the extra pain. I think it's really difficult for people to wrap their head around the concept of constant pain. I'm . . .used to it at this point so I don't talk much about it. It's been almost ten years. Maybe I need to talk more about it so people remember it's a constant thing? I don't know. To me it's like saying, it sure is awesome breathing air today! It's more difficult for me when I have the incredibly rare day I'm not in pain because it's like, oh yeah! This is how most people feel most of the time!
8:15a - alarm goes off
8:35a - get out of bed. If Jow is home, great. He can help me get dressed and save some spoons. He can find me socks and put my bracelet on for me and hook my bra. Can only wear "easy" things - pull on pants, sweater, uggs. Brush teeth, brush hair, take (3) pills.
8:50a - drive into work, listen to NPR. The cold is a problem, it's flaring me worse.
9a - put on space heater which helps a lot. Do work stuff.
11a - Start feeling tired. Need to push through the day, because no time off and bills are due. Have trouble focusing on work because it feels like low grade flu symptoms - a little fuzzy headed, tired, achy, etc.
12p - Realize that food smells weird and tastes weird like it sometimes does. Shove some down. Still smell weird smell.
2p - Having trouble sitting in chair. Try to get comfortable, not possible.
2:30p - Can't ignore the extra pain* anymore. Have to push through.
4p - Leave work. Had to stay late to make up lost day.
4:15p - Assess spoons when at home. Realize yoga not likely. Massage = hurty. Brain too foggy to write. Brainstorm? Hack off bits of a story? Maybe. Can manage sewing and tv. Try to stay hydrated. Every time I get up, I will likely need help.
5p - Jow makes dinner. Hopefully, hot buttered rice. Had to Peapod this week, too tired to manage grocery shopping.
6p - Can't go out. April will come over and keep me company for a bit.
7p - Can't help with housework or putting away groceries. Feel listless and agitated and oh yeah pain.
8p - Jow packs my lunch for me. Figure out spoon/shower situation. Sometimes, I don't have enough spoons to shower. It's too hard to stand that long and the cold is too hard on my body. I have elaborate non showering rituals: washing my hair (if really spoonless, just my bangs and just shampoo) in the sink, using cucumber cleaning cloths, scrubbing my nails, cleaning my ears, deodorant, etc.
9p - Five more pills, telly.
10:30p - Mala, see if Jow will read to me to calm my brain down. Can't manage reading too much on my own. Trouble getting to sleep. Uncomfortable in bed, even with memory foam. Brain racing, so tired can't sleep.
11:30p - Sleep
Lather, rinse, maim until the flare up ends.
* This is an issue because (a) who really likes extra non consentual pain? and (b) sometimes people will genuinely try to be sympathetic about it, which is kind but the issue is they usually say something along the lines of, I'm so sorry you're in pain. :( Which is met by a puzzled, . . . .but I'm in pain all day every day? The abnormality here isn't the pain, it's the extra pain. I think it's really difficult for people to wrap their head around the concept of constant pain. I'm . . .used to it at this point so I don't talk much about it. It's been almost ten years. Maybe I need to talk more about it so people remember it's a constant thing? I don't know. To me it's like saying, it sure is awesome breathing air today! It's more difficult for me when I have the incredibly rare day I'm not in pain because it's like, oh yeah! This is how most people feel most of the time!
