I’m sure there are other things besides not eating that cause your body to become a jumble of sensations…..do you ever feel that all you are is a pair of eyes watching the world…..and the rest of your body doesn’t exist? Is that kind of what you are describing in this blog post? Ivan sometimes feels that way while driving down a straight road….

And there is a lot of information on your blog about your perceptions of things so if you were able to write a scripted summary of it for all medical people you come in contact with….you might not feel like going /headdesk each time someone asks you to explain something.

Oftentimes people are extremely uncomfortable with things they cannot make head or tail of.

Sorry to hear about your pain. :(

Perhaps it would be helpful to keep a printed paragraph explaining your difficulty perceiving and describing pain. If you can think of any ways for medical professionals to get the information they need to help you, you could include that as well. That way, the next time someone asks you pain-related questions, you could just hand them the paper.

Thinking of you,

Rachel

BTW I just went through 200 spam messages and found your and someone else’s comments there. Meanwhile 16 spam messages made it to my regular comment area.

I try to tell them “it’s a significant amount of pain that has a severe impact on my quality of life and impairs my ability to do everyday tasks like washing dishes, bending over, or lifting moderate loads.” I’d rehearse the line! You’d think that would be enough for them because it quite clearly says “this is a problem” but they seem to want to know how much I think it hurts maybe to see if they think it’s a problem, too.

Last month I tried telling my doctor that my background pain levels are maybe between a 2 or a 3 which simply resulted in my doctor completely dismissing my chronic pain. Of course, I consider a 5 to be unbearable amounts of pain where I have to stop it’s just that I can imagine and have experienced pain much, much worse than that in pain flare-ups.

It took over 20 minutes in a 30 minute appointment to convince her that yes, I actually am in legitimate amounts of pain to treat and that I’m not just complaining about being tired. In the end she marked my background levels of pain between 7-10…

And of course talking about your body and your pain is a nightmare. I honestly don’t pay attention to whether or not my fingers are tingly when my shoulder is flaring in pain and maybe it’s not easy for me to tell. Or the time that she did the neuro workup and asked me if two sensations feel the same and I say “yesmaybeno what do you consider feeling different?” and she takes it as a no even though it should have been a yes and doesn’t accept my trying to explain my answer because clearly if I was having difficulties with that it would have been obvious to me instead of “being a qualitative difference but not quantitative and is it because you accidentally touched me differently on each side?”

*sigh*

And I left with what amounted to a “you’re clearly not that bad off and if you were really that serious about it you would loose weight” instead of ordering or trying to actually diagnose WHY.

/rant

Even thought i’m not autistic, i feel very discontinuous these days, much more than continuous. And it’s not so much of a problem for me, the problem is that a lot of people don’t seems to think about themselves, or about the life they live, as a discontinuous thing as much as a continuous stuff. Of course there is both of a continous and a discontinous part in life, but the discontinous part of it seems very unrecognized.

Anyway…

merci, à bientôt.