(no subject)

[the_rck]

I got one beta read done yesterday. It was the shorter one that required less focus, so I've still got the harder one to tackle.

I'm at the point on the new long story where I just want to post it and not care at all that parts of it don't work. I'm stomping hard on the urge, but since I'm not currently doing anything with it, part of me just wants to be able to check off that it's done. This waiting thing is hard.

My body has let me know that, no, I'm still not getting out of perimenopause. That means I slept badly last night and likely will again tonight which, in turn, means this week is going to be bad in that direction. The odds of my still being sentient by the time we get to the game session on Wednesday evening are abysmal.

I was hoping to sleep in a bit, but I reached the point by about 8:00 where any sharp sound made my adrenaline spike. That included things like Scott passing gas.

I worked a little bit more on my idea of a pain scale. I realized as I did it that I was making more of a chronic pain scale than an acute one. Doctors tend to ask about the acute side, but the chronic side is a lot more important to my ability to function.


0 Hurts but not enough that I’m aware of it if no one asks

1 Hurts but I can still do most things

2 Hurts but only when I do certain things

3 Constant but doesn’t affect movement or cognition very much, gets worse the more tired or anxious I get

4 Continues hurting when I stop doing whatever set it off, gets worse over the course of the day, constant after I’ve been awake for an hour or two

5 Hurts to the point of swearing when I do certain things but eases off after, gets worse over the course of the day

6 Constant and distracting, not possible to forget it’s there, sleep is the only escape

7 Hurts to the point of incapacity when I do certain things, gets worse over the course of the day

8 Constant making sleep difficult

9 Constant with nausea

10 Constant with difficulty seeing or finding words or interacting with people


I'm not sure how to classify things like waking up in pain and having it slowly go away over the course of 30 minutes to an hour or what sort of modification for the scale occurs when I have one bit of me that hurts sharply or overwhelmingly enough that I temporarily lose track of the other things that hurt.

Comments

[alexseanchai]

♥

"waking up in pain and having it slowly go away over the course of 30 minutes to an hour" sounds like "woke up at 6, decreased to 3 over the next hour" or whatever, and "one bit of me that hurts sharply or overwhelmingly enough that I temporarily lose track of the other things that hurt" sounds like an occasion to switch to the acute pain scale?

[the_rck]

Those are good suggestions! Thank you!

[lunabee34]

That's a really useful scale. I would show it to your doc.

[the_rck]

Thanks for the suggestion! I will take it in the next time I see her.

[evalerie]

I feel that I should know this, but I don't: Which parts of you hurt? I know about specific wrists and ankles and headaches and such, but I wasn't sure if that's what's hurting, or if you mean some other type of ongoing pain in addition.

[the_rck]

It varies from day to day, week to week. Even Scott can't track it. This is why I've usually been hurting steadily for weeks or months when I finally try to schedule an appointment-- The odds are good that whatever's hurting today won't hurt next week. Something will, but it won't be the same thing.

I'm generally between 1 and 3 on this list. 2 is more noticeable than 1 or 3 because it has sudden spikes of increased pain. The last two years, I've spent a lot of time between 3 and 6, just with different bits of my body yelling at me at different times.

I've seen some research suggesting that part of fibromyalgia (at least for some people) may involve the body not being able to stop screaming over the sort of pain stimuli that normal people just stop considering pain. I can't tell if I'm injured or if my CNS just thinks I must be.

[evalerie]

Hugs!!

[fred_mouse]

That is useful. I will have to consider it. I was going to rank myself at 4, and then thought about how much swearing I've been doing -- it is almost background today.

[the_rck]

Yeah. Even a lot of pain can start feeling normal until I pay attention. I end up mostly noticing that I've reached swearing levels because Cordelia gets upset when I do. She takes it as evidence that something terrible is happening to me.

[fred_mouse]

I sympathise. I was listening to a radio programme a few years ago on chronic pain, and there was some statistic about the proportion of Australians living with chronic pain, and I was all 'that must be horrible' rapidly followed by the epiphany that they weren't talking about people who were in significantly more pain than me, they were talking about people like me, who make day to day decisions based on pain levels.

[the_rck]

There's a certain cognitive rebalancing involved in realizing that one has a disability, that's one's definition of 'functioning normally' is many other people's idea of something being very wrong. It's just... It's how we live.

I would very much rather not live this way, but it is my normal.

[fred_mouse]

All this. And that some of one's dreams require a body one doesn't have. Also, that some people are never Going To Get It, and that some days, that person is going to be me.

[senmut]

This is GOOD!