Sometimes you have moments that are sobering.
For example: this morning, while browsing Twitter, as I am wont to do in the mornings, I came across someone posting a pain scale. This one was slightly different to what I get to use at my rheumatologists’s, which is just a little sliding scale thing from “Hey, I’m okay” to “Kill me now” (I may exaggerate slightly on those labels).
Anyway, on that little sliding scale I usually put my daily pain levels at somewhere in the middle. Because, yanno, it’s there, but mostly I just ignore it and get on with everything. Sometimes its worse, and I head to the painkillers. For the record, it’s usually back pain (SI joint mostly) and headaches that have be running for the pills.
Also – Running for the Pills is totally my new band name.
Ahem. This pain scale was slightly different to what I’m used to:
So, on my rheumatologist’s sliding scale, I usually place my regular amount of pain somewhere in the middle, around a 5. But looking at this, and the activity tolerance scale, I’m actually usually at a 7-8 on a daily basis. That kind of stopped me in my tracks.
I know that there are probably people who would say that these kinds of pain scales aren’t that useful for chronic pain, and maybe they’re not. It’s certainly true that I’ve gotten used to being in some kind of pain pretty much all the time. Right now, most of that pain is fibro related, since it’s cold this morning, which always triggers at least a mild fibro flare. That will improve as the day gets warmer and I move around more.
These days I put a lot of effort into appearing functional, despite the pain. I get up, I shower, do my hair, put on makeup. I try not to talk about it much in real life. I don’t need a cane to walk any more. I can stand on public transport if I need to. I go out walking, I lift my kid up when he needs it (which is a bit, since he’s a huge cuddler). But it’s still there.
And still, I know that there a lot of people who have a lot more, a hell of a lot more, to deal with. I am acutely aware of the privilege I have. I don’t have to work, because I have a wonderful spouse who supports me financially. I choose to work on writing, and I am mostly able to pursue this because of family support giving me childcare. I have access to the medical care I need and can afford to see specialists and get tests done. I don’t have to worry about affording medication. I am so, so, lucky, and I know it. Hell, I even got to have a kid, which a lot of people don’t get, especially those with chronic illness.
Still, it kind of sucks, and sometimes I need to say that. And then I get up, and just get on with things. There’s a lot to be done, even with pain.