It’s funny, I haven’t blogged for quite a while, but I felt the need today, and when I came to write the post I found this one already started but not finished, on the exact same subject! It was drafted from January of LAST YEAR, so some of the details are no longer current, but I’m gonna leave the text anyway and just add to it at the end…
Circumstances this week (1.5 years ago) brought to my attention the fact that I, perhaps, hide my pain too well. I’m not sure how that’s the case, I feel like I whine about it non-stop sometimes. I am constantly upset with myself for not being able to better hide my pain.
I have dreams once in a while in which I’m tortured relentlessly, but somehow manage to make it through without uttering a whimper. I wake up from those dreams feeling both proud, that I was able to go survive it all without caving, and disappointed because I know I can never come close to that in real life. The trauma and emotional upset, of having been tortured all night long, tends only to hit me later.
And therein lies the rub. I am in in constant pain, and have been since I was young. I take a number of meds that help keep it at a bearable level, but I think bearable for me is quite different than what bearable would be for anyone else.
When I see a doctor, and he asks me what my pain level is, I just throw out a random number. I have never understood those pain charts (though at least this one is cute: http://flic.kr/p/8mfrME). Every time I have broken a bone I’ve started laughing uncontrollably. The worse my pain is, the more I try to smile and laugh to make it through. I may grimace in between, I may moan and groan, or whimper uncontrollably when I am half asleep, if it’s bad enough I may sputter and cough, or cry out uncontrollably, but under most circumstances I will do my utmost best to hide it, or brush it off with humor.
Here begins today’s rant… The whole pain-scale thing is really starting to get on my every last nerve. Every single time you talk to someone at a doctor’s office now, they want to know where your pain is on a scale of 1-10. They have to mark it down in their notes so they can feed it into their computer, presumably to track whether they’re “helping” you or not. It’s such bullarky.
My pain scale is different than your pain scale. My pain scale today is different than it was 6 months ago. Pain is relative by it’s very nature, it’s also fluid. When you’re in constant pain your body adjusts to it, and one pain is not the same as another.
So when a doctor asks what my pain level is I have to ask “overall, or in the realm you care about?” They always look at me sideways when I ask this. “Well, where is your pain?”. Everywhere! It’s everywhere. My neuralgic pain is system-wide. My arthritic pain is clustered in and radiating from myriad joints. My muscle pain depends on what got ‘over-used’ 2 days ago. My back pain varies from moment to moment. My arm pain is ever present, but sometimes so bad that I can think of nothing else. When one pain relaxes a little, the others start screaming louder to garner my attention. I sometimes rejoice when I get an acute injury, because I know I’ll have one focal point stealing my attention for a little while, and the rest of my pain will be forced to fade into the background, if only for a short time.
I can’t explain this every time, though, so I generally just leave it at a “yes, everywhere” and the doctor or nurse either says “well, just give me a number to put in the chart” or they say “let’s focus on the pain you’re here about today”. And this is where I guess a number, randomly, because the pain chart is completely meaningless to me. 1 is no pain, they say. 10 is the worst pain you can imagine. I can’t imagine saying anything less than 3, just because I can’t even remember a day with no pain, I have no idea what that would be like anymore. The worst pain I can imagine? How can you imagine a pain that’s worse than the worst pain you’ve felt, if the worst pain you felt caused your eyes to roll back in your head and your body to move involuntarily? If that happens fairly regularly, then you can’t say it’s the worst you can imagine, because experience tells you there’s always something worse. The worst pain I could imagine would probably kill me, maybe put me into a coma, how the heck do I know? If I can process your words and respond then I can’t possibly be at 10. The worst pain I’ve seen so far must be a 9, but I’ve seen it fairly frequently lately. 3-9 doesn’t leave all that much room for nuance, really.
Average is supposed to be somewhere in the middle, though, right? So the middle from 3 to 9 is what, 6? Can we use fractions? Am I having an “average” day? Maybe I should say 6 or 7 if it’s a ‘normal’ day for me?
But here’s the rub. if you tell medical professionals that your pain is nearly always higher than 5 they don’t believe you. At best, they think you’re exaggerating — maybe they think you don’t understand the scale — at worst, they think you’re drug-seeking. If you’re smiling and trying to grin and bear it then you’ve just broken their entire scale of sad faces, so you can’t possibly be being accurate. For your own protection, it’s best to round down. Except if you’re not in a high amount of pain then your care doesn’t seem pressing, either.
It’s a catch 22, and I absolutely hate it. I hate dealing with it every single time. I’ve gotten to the point where I just want to tell them to look at my face and try to figure it out for themselves, but I know that would screw with my medical charts in very bizarre ways.
Do you have to deal with this on a regular basis? Have you figured out a solution or do you just pick random numbers as well?