Hoarding Pain Meds

Or how nearly every pain patient evaluates their ‘right’ to pain relief

Triggers: mention of suicide/death, drug use

The past month for me has been better than the last year as far as pain is concerned. I started acupuncture and it’s really helped a lot. On top of that, I spent some time with some close friends and tried pot for the first time while in Oregon. My pain went from being at 6/7–10 on the daily to maybe 3–4/10 at the highest. My allodynia, or the interpretation of everyday sensations like clothing on your skin hurting, was the lowest it had been in years.

As I woke up today, I was hit with a horrible realization. It was all back.

PAIN

Slowly and after a while, I got out of my bed and faithfully took my morning dose of medications. This includes a non-steroidal anti-inflammatory drug (think Aleve or Advil but much stronger) and Lyrica, which helps my fibromyalgia pain.

I waited for a while this morning, hoping against hope that these medications would actually help my pain. I slept, which ironically helped slightly more.

The pain dissipated somewhat as I went about my day.

At bedtime, I always read to T. He preheated the bed with our electric blanket. I climbed in and read until he fell asleep.

I tried to sleep, too, but that pain came back.

A familiar ache hits my spine, from my ass all the way up to where my head and neck meet.

“I can’t even be in bed with my husband,” I think to myself like it’s some kind of moral failing that I have this pain. Instead, I sneak out of the bedroom and have to resort to sleeping on the couch — again — if I can sleep.

It’s 1:00 AM right now and I’m nowhere near sleepy town. If/when I get there, my sleep won’t be restful. It won’t be restorative. I will sleep a shit-ton tomorrow during the day, too, to try to fix that… just as I have for a few days now.

I’m sitting here in about as much pain as I was when I woke up. Sitting across from me are pain medications that I continue to hoard from past injuries or scripts. I even keep some that I am allergic to just in case.

As my pain continues to hover at 7–8, though, I wonder what just in case even means.

With recent threats and cutbacks in pain medication scripts — despite the fact that the CDC has officially said this is related to illegal opiates, not legal ones — it’s harder than ever to be a patient with chronic pain. One of my specialists, while amazing, discontinued my muscle relaxant script, leading to me having excruciating pain since March 2016 — pain that only recently was really dealt with, thanks to the acupuncture.

Even if we are in the emergency room with intense, nearly fatal levels of pain, we are still denied pain relief. Instead, chronic pain patients are labeled drug seekers.

We are seeking drugs, but not in the way they think — we seek them in order to live full lives, to have the right to not be in tears while writing in the early morning hours instead of in bed next to our spouses.

My medical record has a note in it from a previous primary care doc I saw who laughed in my face, pronounced an abscess a pimple, and told me to calm down and get over it. I can’t remember the exact phrasing, but he had said I barely flinched so whatever this was must not have hurt that much. I replied with something akin to “Well, you’re dealing with a chronic pain patient who hits 10 on a ‘normal’ person’s pain scale daily and has since 1993 — it’s not like pain is foreign to me here.”

The note in my record mocks me for that comment, for telling my truth to a physician who thought I was a hypochondriac but whose advice would’ve killed me.

Reading that note hurt. I already feel unworthy of pain relief, illogically feeling like it’s something everyone struggles with but I’m failing at. It’s a common feeling, especially for many of us who have grown up with chronic pain. It’s already hard for me to come to you and tell you I’m scared and in pain.

Many in healthcare, like this guy, seem to have thrown empathy out along with caring about our pain.

Life-saving medications have been taken away from us with no promise of easing up on research related to alternative pain relievers currently illegal in most places.

When in Oregon recently, the state where I grew up, I tried pot for the first time. I specifically got a kind with a higher CBD level — 5 parts CBD to 3 parts THC — because I wanted more of the pain relief, not the high. Pain relief was exactly what I got.

Sadly, I live in Scott Walker’s Wisconsin… meaning even medical marijuana won’t happen here anytime soon.

This mixture of attacks on those of us living in horrifying pain daily means that I hoard old pain pills. I keep expired strays of opiates and muscle relaxers in my bathroom, hoping I don’t feel the need to take them because that’s one less for when I might need it more than now.

It’s like this idea in The Fault in Our Stars by John Green of saving our 10s:

“When you go into the ER, one of the first things they ask you to do is rate your pain on a scale of one to ten, and from there they decide which drugs to use and how quickly to use them. I’d been asked this question hundreds of times over the years, and I remember once early on when I couldn’t get my breath and it felt like my chest was on fire, flames licking the inside of my ribs fighting for a way to burn out of my body, my parents took me to the ER. nurse asked me about the pain, and I couldn’t even speak, so I held up nine fingers.

Later, after they’d given me something, the nurse came in and she was kind of stroking my head while she took my blood pressure and said, “You know how I know you’re a fighter? You called a ten a nine.”

But that wasn’t quite right. I called it a nine because I was saving my ten. And here it was, the great and terrible ten, slamming me again and again as I lay still and alone in my bed staring at the ceiling, the waves tossing me against the rocks then pulling me back out to sea so they could launch me again into the jagged face of the cliff, leaving me floating faceup on the water, undrowned.”

I do feel like I continue to be slammed into a cliff. Sometimes that’s a quite literal feeling, as it is right now. Sometimes that’s more emotional as I grow more and more tired of dealing with the monotony of being in so much pain that death seems a respite — but not being actually suicidal.

Other times, that cliff is trying to explain all of this to other people who will never in a million years understand.

If you’ll excuse me, I have a few hours of staring at relief literally outside my grasp before passing out due to exhaustion and pain.

Kirsten, a writer and chronic illness activist, runs Chronic Sex which highlights how chronic illnesses and disabilities affect Quality of Life issues such as self-love, relationships, and sex. If you’re interested in helping with this project, please find the project on Patreon or iFundWomen.