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6:48pm March 7, 2014
feliscorvus: youneedacat: Just did my nerve block. The doctor got a little lost in there, so I will see how much this hurts when the numbing wears off. Killing time on the ride home because he keeps detouring. OWWW. I am glad the nerve blocks exist and that they help some, but seriously, the “digging” thing. Ugh. Weren’t we supposed to have nanobots for this sort of thing by now?! Yeah he kept poking around in there and going “Am I hitting something solid?” over and over and over again.  And then he started talking about how he thought he was hitting the zygomatic arch.  So even though I didn’t totally feel everything (the numbing worked reasonably well this time), I had a really unpleasant sense that he was hitting bone over and over and then he spent awhile rooting around trying to find a way to wherever he was trying to go. He did apologize afterwards and said something like “You handled that very well.” He at least didn’t appear to be trying to turn corners inside my face, which a resident did once (resulting in me banning residents from doing this to me – I said something next time like “I’d appreciate if we don’t use residents from now on” and the doctor said “you’re being too polite”), and when the sensation came back from that, I started passing out from pain, and didn’t recover for a month.  I’m nowhere near that bad right now.  My body is really sensitized to pain, and I’d put it at 6 or 7, but I’m not in horrible shape considering everything that went on. And I seem to be having a really good day with the steroids, too.  Like I seem to have better and worse days energy-wise, and today I’m feeling tired but still full of energy.   The “tired but still full of energy” thing really brings home the fact that the severe fatigue and exhaustion experienced by people with chronic illness is not the same as feeling tired.  Right now I feel tired, but not fatigued in any medical sense.  People who think that they can compare fatigue from chronic illness to any level of exhaustion they have ever experienced outside of illness (and even many types inside of illness), are completely off base. This whole experience of getting treatment for adrenal insufficiency is giving me a lot of insight into how wrong many nondisabled people are when it comes to chronic illness.  I knew it intellectually, but deep down I always worried they were right – that I was lazy, that my severe bone-crushing fatigue (that at its worst made me feel like beating my heart took too much energy and I just wanted to rest… until I realized what that meant) was the same as just feeling tired, and that it was possible to just push through it. Everything is obviously different than they see it.  Everything.  I hope I don’t forget this.  And it makes me angry.  It makes me really angry that enough people say these things to sick people, that we internalize that crap and hear them saying it to us even when they’re not there.  There’s a reason that my hallucinations and delusions when I was delirious largely revolved around the idea that people thought I wasn’t really sick.  In fact, I was dealing with wonderful and highly patient nurses who went out of their way to prove that’s not what they thought and that I was hallucinating, above and beyond anything they had to do.  But after hearing for so long that I wasn’t really sick, and running into a bad apple who accused me of deliberately avoiding activities because I was lazy, I thought that’s actually what they believed and it took a lot of effort to convince me otherwise.  Partly because deep down I wondered if it was true.  And that’s horrible.  Nobody should have to go through that level of self-doubt.  I think I internalize such ideas more than most people do, but I think most disabled people internalize them at least a little.

feliscorvus:

youneedacat:

Just did my nerve block. The doctor got a little lost in there, so I will see how much this hurts when the numbing wears off. Killing time on the ride home because he keeps detouring.

OWWW. I am glad the nerve blocks exist and that they help some, but seriously, the “digging” thing. Ugh. Weren’t we supposed to have nanobots for this sort of thing by now?!

Yeah he kept poking around in there and going “Am I hitting something solid?” over and over and over again.  And then he started talking about how he thought he was hitting the zygomatic arch.  So even though I didn’t totally feel everything (the numbing worked reasonably well this time), I had a really unpleasant sense that he was hitting bone over and over and then he spent awhile rooting around trying to find a way to wherever he was trying to go.

He did apologize afterwards and said something like “You handled that very well.”

He at least didn’t appear to be trying to turn corners inside my face, which a resident did once (resulting in me banning residents from doing this to me – I said something next time like “I’d appreciate if we don’t use residents from now on” and the doctor said “you’re being too polite”), and when the sensation came back from that, I started passing out from pain, and didn’t recover for a month.  I’m nowhere near that bad right now.  My body is really sensitized to pain, and I’d put it at 6 or 7, but I’m not in horrible shape considering everything that went on.

And I seem to be having a really good day with the steroids, too.  Like I seem to have better and worse days energy-wise, and today I’m feeling tired but still full of energy.  

The “tired but still full of energy” thing really brings home the fact that the severe fatigue and exhaustion experienced by people with chronic illness is not the same as feeling tired.  Right now I feel tired, but not fatigued in any medical sense.  People who think that they can compare fatigue from chronic illness to any level of exhaustion they have ever experienced outside of illness (and even many types inside of illness), are completely off base.

This whole experience of getting treatment for adrenal insufficiency is giving me a lot of insight into how wrong many nondisabled people are when it comes to chronic illness.  I knew it intellectually, but deep down I always worried they were right – that I was lazy, that my severe bone-crushing fatigue (that at its worst made me feel like beating my heart took too much energy and I just wanted to rest… until I realized what that meant) was the same as just feeling tired, and that it was possible to just push through it.

Everything is obviously different than they see it.  Everything.  I hope I don’t forget this.  And it makes me angry.  It makes me really angry that enough people say these things to sick people, that we internalize that crap and hear them saying it to us even when they’re not there.  There’s a reason that my hallucinations and delusions when I was delirious largely revolved around the idea that people thought I wasn’t really sick.  In fact, I was dealing with wonderful and highly patient nurses who went out of their way to prove that’s not what they thought and that I was hallucinating, above and beyond anything they had to do.  But after hearing for so long that I wasn’t really sick, and running into a bad apple who accused me of deliberately avoiding activities because I was lazy, I thought that’s actually what they believed and it took a lot of effort to convince me otherwise.  Partly because deep down I wondered if it was true.  And that’s horrible.  Nobody should have to go through that level of self-doubt.  I think I internalize such ideas more than most people do, but I think most disabled people internalize them at least a little.