Pain is really difficult to describe.
When you go to hospital — because of an acute problem or for an outpatient appointment of some kind or whatever — they often ask you to rate it on a scale of 1-10, with 1 being negligible and 10 being the worst pain you can imagine. There are a few problems with that, because pain’s super subjective: there’s an XKCD comic that summarises one problem rather well.
And when you suffer from chronic pain it becomes even harder, because you forget what 0 or 1 feels like and your standards drift over time, so that pain which others would rate a six or seven becomes your normal everyday state. I’ve got very good at knowing the difference between ‘usual pain’ and ‘unusual pain’: that is to say, I can generally tell when a pain is a new and exciting symptom that suggests I’ve hurt myself, or whether it’s just business as usual and I should ignore it. It can still be hard to tell, though.
Plus, actually pinning down what a pain feels like or where it’s located is tricky, especially when it’s a more abstract feeling or if it’s not hurting at that exact minute so you can’t just point to where you think it’s coming from. For someone who spends so much of their time in pain, I’m terrible at explaining it to doctors.
When I do manage to come up with a description, I save it in my head for the next time I need to explain that pain to someone, like a ready-made description. For example, my hands have been bad the last few days, in a way that feels like my muscles or tendons are made of something sharp, like a really fine cheesewire. Every time I move my fingers they’re making thousands of little papercuts inside my skin on the backs of my hands, so that it’s itchy and painful.
This does a fairly good job of conveying how my hands feel, even if I lack the technical terminology and knowledge to know things like whether it’s my tendons or muscles that are the problem. Also, it doesn’t help me fix the problem. But being able to explain it is the first step.
Recently, I came across a more detailed version of the pain rating scale which pairs the numerical values with a description. As someone who doesn’t do well with objective numerical values and needs things to be more nuanced and subjective, this works better for me, because I can see which description best matches my situation.
The first thing I realised when I saw this scale is that I exist permanently between 4-7 on this scale, which means when I was telling my physiotherapist that things were at 3 or lower, I was wrong. (See the XKCD comic above for a possible explanation of why that might have been…) If I injure myself, it might shoot up to an 8, though I don’t think I’ve experienced a 9 or 10 recently. When I sprained my ankle, or when I put my shoulder out of place last weekend and couldn’t turn my head at all, that would probably have been an 8.
On a good day, I’m a 4. I can continue to do work, and may be able to do fun activities too, although there are still things — like playing music — which are usually too painful. This week, which has contained several bad pain days, has drifted between five and six. On Wednesday, I missed one lecture but I made it to the other and was also able to cycle to go food shopping. However, I couldn’t then use my hands very much in the evening, and I needed to put ice on my ankle.
Today, though, I would say I was moving towards a 7. I had to take a cushion and wear multiple supports to be able to sit in a lecture without pain, even though I wasn’t taking notes. (I usually can’t manage that, except on very very rare 3 days. They don’t happen often, though, and taking notes will quickly push me back up to a 4 or 5.) I found it difficult to stand for long enough to cook dinner, although that only took about ten minutes. It’s triggering that itchy sensation in the back of my hand just to type enough to write this blog post.
Having this chart is helpful because I have completely lost perspective about what is a normal level of pain. Had I not seen this, I probably would’ve rated today about a 4 — because I don’t have a broken bone and I’m not breaking down in tears and it’s a duller kind of pain than the sharp, aggressive pains I usually associate with higher numbers. But the pain doesn’t go away, and when I can’t walk properly or stand up enough to cook some pasta? That counts as it keeps me from doing most activities.
It’s still not as nuanced as I’d like and it doesn’t draw distinctions between the achier kind of pain that characterises my chronic conditions and the sharp aggressive pain of my sprained ankle when I put weight on it at the wrong angle, but it helps me to give other people an objective, concrete way of understanding what I’m going through and why I haven’t done any work for a few days.
I’m not really sure what the point of this post was, other than to put into words a few things I’ve been considering recently (and to give updates on my health at the moment — a summary: it’s terrible). Also, I’ve been terribly fatigued to the point of barely being able to get up at times, and I don’t yet have a scale for that one that I can use in conjunction with this, as though to plot things on a graph.
But on the off chance my fatigue lets up enough to allow me to get through an episode of TV or a few chapters of a book without needing to rest my eyes and my head, any recommendations to offer? I’ve joked before that I’m studying the way intensity of chronic pain is directly proportional to amount of Netflix watched, and if you’d like to contribute to my research, drop your recommendations in the comments.