Birthdays are like a personal New Year for me and I become more reflective than usual. That’s a warning by the way.
This morning, after a night of futile attempts to find a comfortable position in my very comfortable bed, the thing I’m reflecting on is pain. Physical pain. Over the last 3 years, and especially since last month’s surgery, it has become a constant, and my brain is determined to figure it out, chart it, put it on the 1 to 10 scale and, most of all, fix it. I’m learning, however, that it’s not that simple.
In February, I had a routine appointment with my oncologist. (Wait, did I just say that? A “routine” appointment with an oncologist?!) The nurse, after taking my vitals, asked me to rate my pain. I said “it’s a 3”. She told me she didn’t have a 3 on her (computerized) chart; I’d have to pick an EVEN number. I replied “Okay, it’s a 3”, mostly because it’s true but also because I abhor how computers come between care providers and patients, dammit!. Then, as if I were suddenly a child, she turned the computer screen to face me so I could see the line of bubbles filled with EVEN numbers. Sure enough, no 3. Ah, of course, this makes everything so much easier!
I’m learning (and certainly I’m not the only one) that such a pain scale is fairly ludicrous. I know it has its place, and I think that place is comparing my pain today with my pain yesterday and so on and so forth. Still though, it’s not that simple.
For example, today I’m in a lot more pain that I was yesterday. If yesterday’s level was a 3 (which is where I usually hang out), does that mean- because I’m in “a lot more pain”- I’m at a 6? Now, I don’t know why, but venturing above a 5 seems almost brazen. I mean, I can still walk and carry on a decent conversation, unload the dishwasher even. Sure, it was enough to prevent me from getting any amount of decent sleep, but a 6? I’m sure you can see how this works.
Then the questions start (more questions, I mean): Is it because I took a walk yesterday? Did I push myself too hard in my (very gentle) yoga practice? Or any other rendition of “did I cause this… is it my fault?”. And then, the mother of all questions: is it bad enough to take a Dilautid? Around and around this conversation goes in my head. I have a tendency to over-analyze, I know. I did warn you.
A few weeks after my recent surgery, I listened while my husband explained, to one of my doctors, his perspective of my pain. All I could think was “Wow.” and “Really?”. For one thing, I thought I was better at adapting or managing- call it pretending if you want, but whatever it is, he evidently sees right through it.
Of course we have many descriptors for pain, but those don’t necessarily simplify things any more than the 1 to 10 scale. The word headache, for example, means something very different if you have a migraine or meningitis, than the sensation you might get from reading too long without your glasses. Stomachache is another such word with a thousand possible meanings. If this particular word- or anything similar- crosses my lips, my husband goes into high alert and asks a bunch of questions I’d rather not answer. See? Complicated. Does it burn or does it throb? Is it a stabbing pain or a dull ache? Localized or diffuse?
My pain happens to be of “unknown etiology.” Great. What makes this significant is, if the cause is a mystery, so is the treatment. Is it scar tissue? Radiation damage? (The latter always gets my vote.) Or some of both? Maybe there’s nerve damage.
The fact that bothers me most, I think, is that no one else seems to be as concerned about it as I am. (It’s possible this it true for most people with chronic pain, I’m just guessing.) I don’t mean my husband or my sister or my daughter, I’m talking about doctors- you know, the ones whose job it is to do something about it!
(And- for the record, “doing something about it” does NOT mean lecturing me on the dangers of pain medication, repeatedly referring to my pain as “benign”, or making statements like “you seem to think medicine has failed you” – translation: “we made your cancer go away, you should be kissing our feet and oozing with gratitude, not moaning about something like pain-that-interferes-with-your-everyday-life for gosh sakes!”. NOT helpful. I’m learning that there’s a lot of shaming that goes on around chronic pain, which is also not helpful.)
Did I mention I hate asking for help? Actually, “hate” is too strong a word. In reality, I have gotten much better at asking for help, once. Meaning, one time, or the first time. But asking again… yeah, I’m not so good at that. I’ve always disliked repeating myself.
In a few days, we will drive 3 hours to see my surgeon for my 6 week post surgery follow-up. I will need, once again, to set aside pretense (oh how I want to be the perfect patient!) and, dare I say, pride? Because I so despise being the needy one. The tears come as I write these truths: my body is broken. I am in pain. I cannot do all that I used to, all that I want to. I need help.
I will tell the truth. I will take the risk. I will ask for help. I will keep asking for help. This is my this year’s birthday gift to me.
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