as small as a world and as large as alone, clatterbane: adelene-dawner: clatterbane: ...

10:53am August 13, 2013

clatterbane:

adelene-dawner:

clatterbane:

wheeliewifee:

sasha-smithy:

rainbowrosepetals:

purpleviolin91:

the best pain scale ive ever seen for chronic pain #Repost from @jennjenn129 with @repostapp #chronicpain #rsd #crps

Helpful activity scale both for talking to practitioners and gauging your own progress.

50 to 40 while trying to live at a 60 but then later on going to 20 if I don’t remember to rest up.

damn. 40 on my very very best days. 20 would be my average….

I like the focus here on how you’re able to function, over the longer term. And I wish I had the spoons to transcribe this right now.
But, I’m also stuck at 20 for a while now, sometimes 30 if I haven’t been pushing too hard to look like a 40 or 50. :/
When I actually manage to get in with another doctor, I may well make sure to describe things in these terms. With my partner there to back me up, so they don’t just act like I’m lying and/or crazy. :-|

*deeply confused by the jump from ‘mostly bedridden’ to ‘able to leave the house at least once a week*
*also at ‘able to concentrate for one hour or less’ being the same level as ‘able to leave the house’*
*concludes that this is clearly this is intended for NTs, who are are weird*

Yeah, some of the details there seemed more than a little weird. It does seem like there should be at least one extra step in there, between mostly bedridden and able to leave the house at some minimal level.
At the closest to a 20, when it is really physically hard to get out of the house, I can’t concentrate very well on some things (like, erm, reading when I’m hyperlexic :/) but am still able to hyperfocus on others. Because that’s just how my brain works. Also I am able to push myself to do more things around the house, whether or not that is any kind of reasonable idea, because high pain tolerance and so much experience pushing too hard. (Hell, most people with the kind of injury that’s causing most of my pain right now can barely walk if at all. Though they’re also elderly, and even more likely to be misdiagnosed and undertreated for pain.)

Also bedridden doesn’t always mean unable to ever leave the house. It’s quite difficult for me but I leave in a wheelchair that tilts me back into the same basic positions as my bed. I range from 5 to 15.

adelene-dawner:

clatterbane:

wheeliewifee:

sasha-smithy:

rainbowrosepetals:

purpleviolin91:

the best pain scale ive ever seen for chronic pain #Repost from @jennjenn129 with @repostapp #chronicpain #rsd #crps

Helpful activity scale both for talking to practitioners and gauging your own progress.

50 to 40 while trying to live at a 60 but then later on going to 20 if I don’t remember to rest up.

damn. 40 on my very very best days. 20 would be my average….

I like the focus here on how you’re able to function, over the longer term. And I wish I had the spoons to transcribe this right now.

But, I’m also stuck at 20 for a while now, sometimes 30 if I haven’t been pushing too hard to look like a 40 or 50. :/

When I actually manage to get in with another doctor, I may well make sure to describe things in these terms. With my partner there to back me up, so they don’t just act like I’m lying and/or crazy. :-|

*deeply confused by the jump from ‘mostly bedridden’ to ‘able to leave the house at least once a week*

*also at ‘able to concentrate for one hour or less’ being the same level as ‘able to leave the house’*

*concludes that this is clearly this is intended for NTs, who are are weird*

Yeah, some of the details there seemed more than a little weird. It does seem like there should be at least one extra step in there, between mostly bedridden and able to leave the house at some minimal level.

At the closest to a 20, when it is really physically hard to get out of the house, I can’t concentrate very well on some things (like, erm, reading when I’m hyperlexic :/) but am still able to hyperfocus on others. Because that’s just how my brain works. Also I am able to push myself to do more things around the house, whether or not that is any kind of reasonable idea, because high pain tolerance and so much experience pushing too hard. (Hell, most people with the kind of injury that’s causing most of my pain right now can barely walk if at all. Though they’re also elderly, and even more likely to be misdiagnosed and undertreated for pain.)

Also bedridden doesn’t always mean unable to ever leave the house. It’s quite difficult for me but I leave in a wheelchair that tilts me back into the same basic positions as my bed. I range from 5 to 15.

Notes: