Tonight’s infographic is all about chronic pain. Note the visualization in the center, where only one little person out of more than 7,300 is highlighted, and compare it to the visualization above it, where it shows one person out of three. For every person who dies due to an overdose of opioid pain medications, another 3,029 Americans are suffering from chronic pain.
Those 3,029 people have to give a urine sample each time they need to see their pain management specialist. When they experience excruciating breakthrough pain, they are turned away at the emergency room as drug-seekers. Most of their doctors don’t know how to help them, and so these patients come to believe at least once in their journey that their pain and disability are their own fault. We need to change this conversation.
What a workweek! Last week I got a new project assignment, and have spent most of the weekend, workdays, and worknights crafting a slide deck for a software pitch, including making lots of graphics. So these statistics infographics I’d been making every day — suddenly I had no creative energy left in my body, heart, and mind.
Tonight’s offering is, instead of a stats graphic, a chronic illness graphic. You can be equipped with better words, instead of saying frustrating or offensive things to a friend who has a disability, a chronic condition, an invisible illness.
Yesterday I had a stomach bug, so between waking up at 4am and going to bed at 9pm, I drank one 16-ounce bottle of ginger ale… and nothing more. I hoped this wasn’t going to send my bladder into spasm, because I normally drink a full glass of water each hour between breakfast and supper. Alas, it did cause a Painful Bladder Day, so to keep the mood light, I’ve been playing with this list throughout the day.
You never go anywhere without an extra pad. Or ten.
A colleague raises an eyebrow when you excuse yourself from a meeting for a bio-break.
For the third time.
In an hour.
You get really good at not doing The Peepee Dance.
Or you’ve had so much experience that you add artistic flourishes to your Peepee Dance, rendering it unrecognizable as such.
Your underpants drawer has Nice Panties, Period Panties, and orange Pyridium Panties.
For that matter, you buy all your towels and sheets in shades of orange.
You never go more than 10 minutes without drinking some water.
You keep your urology office’s number on speed dial.
You can’t remember the last time you had OJ.
You keep strategic stashes of towels. And wipes. And extra pads.
You never ever let your pyridium run out. Or your prelief.
You have expert knowledge on the acidity of foods and beverages.
Your urologist’s nurses recognize you and call you by name.
You reflect nostalgically on the days when you could eat Mexican food.
You throw out all your pantyhose and leggings.
So what have I missed? Let me know in the comments (or on social media)!
TIL that I have a substantial amount of shame all knotted up with my disability.
A disclaimer, before I tell the story: this came about because of a disappointment. Because I know that a couple of my colleagues follow me on social media and read this blog, I want to make my purpose for writing this post very clear. This realization came about because of a disappointment. It’s a disappointment that was not intended in the slightest, a disappointment that I had the ability to turn around, a disappointment that I don’t blame on anybody because it’s just a thing that happened. What I want to explore here is not the sequence of events, but my own internal response to them, the affect that I have felt and some of the sources of that pain. But to get to that, I kind of have to tell the story.
Last week, I was asked to help write a proposal. So I poured time and energy into it, and I had a lot of fun working on it, and I thought it was a kickass document. The sales team thought it was pretty kickass, too, because they not only said so publicly a few times (yay!), but they invited me to the presentation with the client. I was so touched by this gesture. I hadn’t been invited to anything like this here before. How exciting–and flattering–that they wanted to include me!
Here’s where the disability piece comes in. I have vertigo. I have vertigo every day, severe enough that it causes me to fall, severe enough that I am on the edge of vomiting at least once a day, severe enough that I can count the number of times I’ve driven in the last three months on one hand. Continue reading “disability and shame”→
This past weekend, I came across a quotation about migraine. A World Health Organization study had said that a person experiencing severe migraine is as disabled as a person experiencing dementia, active psychosis, or quadriplegia. I read it out loud and said, “Well, clearly mine have only been moderate.”
Then I realized that I’ve driven myself to work three or four times over the last three or four months. That’s pretty disabling.
For a number of reasons that I’m not prepared to go into right now, I am about to embark on a low-histamine diet. It’s been a tough thing so far this week, because it seems to be all about the nots so far. There are so many things not to eat, and I’m not eating those things so that I will not be in pain, and even the “good” foods are described in phrases like “any vegetable not on the bad list.”
At lunchtime yesterday, I went to the grocery store to pick up something for lunch and some snacky foods to have at my desk. I started in produce, and I picked up some nice apples and pears – organic, because those weren’t waxed – and did some label-reading. First stop, salad dressings. Continue reading “a new diet, a new year, a new me?”→