I was in the emergency room because of heart erratics, stopped beats, double beats and P.A.T.âs, and after a couple weeks, I gave up and came in. Also when I figured out if I was missing an average of one heartbeat in thirteen, how many more could I afford to miss? So now, 3:00 in the afternoon, and I was hooked up to every monitor possible as my torso jerked a couples times a minute, when the heart double kicked after a missing heartbeat. It hurt.
A woman in scrubs came in and asked, âOn a scale of 1 to 10, how would you rate this pain?â
I thought a few moments about the last 16 months and everything that happened and I started laughing (when I wasnât saying, âOwâ). Rate the pain? Well, there was the time I ripped over 25 muscles along my rib cages and my upper torso muscles went into spasm. Linda and my care worker had to hold me down while I screamed until the opiates kicked in. Would that be an 8? And the pain level where I start hallucinating is below that, so is that a 6 or a 6.5?
âI guess a three or four.â I said.
My partner Linda wanted to smack me upside the head but waited till the woman left. âNext time you tell them â12â,â she hissed at me.
âButâŠbutâŠI have had a lot of extreme pain.â
âThen,â she said, âyou say, if getting a needle into the roof of your mouth is a 10 the pain you are getting is a 9.â
Later after being displayed, prescribed and discharged, I kept thinking about the â10 point scale.â How differently would I have rated my chest pain a few years ago? Probably an 8. How useful then is this scale for people who have/continue to experience chronic conditions, relative to the average person who walks into the ER? So I had two female EMTâs over, both with severe chronic pain conditions, and we talked about this â10 point scale.â
The consensus was that until we experienced our condition we âthoughtâ we knew all about pain. But how quickly chronic or disabling conditions turn that scale upside down. Because over time, we will experience âincidencesâ or âflare upsâ which while turning your face white and making your hands tremble with pain, doesnât actually stop you reading or responding to emails (âIf I stopped EVERY time I was in pain, nothing would get done!â) And how, now, in an odd benefit, what most people consider a â10â on the pain scale is sometimes just part of the ânew ordinary.â
One EMT talked about a call-out she did where part of her finger was severed and how, being in a rural location, after icing her hand and the âfingerâ she just had to sit there in hospital, without medication as the shock wore off. Because first they had to FIND the doctor who âmightâ be able to sew it back on, then HE had to find a babysitter for the kids, and he wouldnât leave until the babysitter arrived.
So 45 minutes later this EMT was sitting there holding her finger. And one thought she had while waiting was âIâm actually grateful I have cluster migraines.â Sheâs had headaches so bad that in a dark room, inside a shut walk-in closet, with a blanket over her head, it was still âtoo brightâ to decrease her pain. She said that level of pain helped her keep sitting calmly while others would be screaming.
How does a person with years of acute arthritis starting in childhood rate pain with the âOut of 10â scale? How does someone with EDS who has had dozens of dislocations? Or someone with Fibro with days they canât get out of bed?
The people I talked to fell into two groups. Those of us (including me) who NEVER give anything a 10, simply because, after so many times of thinking âIt can never be more painful than thisâ something else always pops up. So, for ME, if âHaving my body sucked through a drinking straw by a black holeâ is 10, then having a nerve conduction test isâŠ.â
The second group says that any time the pain drives you to the point of loss of sanity (however temporary), that counts as a 10 (or beyond). That seems reasonable to me too. Since I have said (more than once) to my night worker, âI canât sleep unless I relax, and once I relax ALL the pain will come in and I will not be sane anymore, but hopefully the sedatives will kick in soonâŠ.okay, here I goâŠ.â The next day she said I did manage to sleep after talking to people who werenât there and yelling things that made no sense.
Back in the ER, after the â1 to 10â woman I had a pedantic female nurse come in to ask, âCan you PRECISELY describe your pain?â
I said, âSomeone is reaching into my chest, grabbing my heart, pulling it out through my ribs, and once six inches clear letting it snap back with a resounding whack!â
The nurse looked irked, âI said, a PRECISE description.â PAUSE âDo you want me to put that down as âburningâ or âthrobbingâ?â
I said, âHow about getting kicked by a horse in my sternum every 13 or so heartbeats.â
She glared at me, âIâll put that down as âburningââ and swept out of the curtained areas with an aura which blared: âSOME people!â
I think as PWDâs, we have a different, and sometimes very individualistic view of pain. So, I guess the question is, how DO you measure pain? Do you have two scales: one for things inside of your condition and another for that not? As, for example, after having amputated limb nerve pain, how does a hammer to the thumb rate on the pain scale? Should there be a scale for people without disabilities and one for each disability?
Because I do find myself saying things like, âOh, thank god, itâs only food poisoning!â That is only odd until you know my condition causes hours of intestinal cramps with NO reason (see, food poisoning actually ends).
SoâŠ.tell me your pain?
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