I Have No Pain Scale and Everything Hurts: Communicating Chronic Pain

Hello people of the internet! It’s been a while. I have had a lot of personal stuff happening over the last six months or so, as well as some (very exciting) professional things which I’m not ready to announce yet.

One more order of business before I move on with the post: I’m trying to learn how to use alt-text and image descriptions so that they’ll work in the most accessible way possible. If I’ve screwed something up you would be doing me a massive favor by letting me know.

I’ve recently started using tumblr again. The plan was to stay very low profile and only post about fandom and cute animals and sometimes personal stuff. This plan has been something of a failure so far, partly because much of the advocacy and activism in which I’m involved is personal, and partly because I’m just not that all that great at keeping a low profile (and I have a pretty low threshold for what I consider “low profile”).

Anyway, today I came across a pain chart that someone had posted. Here it is:

A pain chart which includes descriptions of experiences. Text says: 0, no pain, "I have no pain", followed by 1, minimal "my pain is hardly noticeable", 2, mild, "I have a low level of pain. I am aware of my pain only when I pay attention to it," 3, uncomfortable, "my pain bothers me but I can ignore it most of the time," 4, moderate, "I am constantly aware of my pain but I can continue most activities,", 5, distracting, "I think about my pain most of the time. I cannot do some of the activities I need to do each day because of my pain,", 6, distressing, "I think about my pain all of the time. I give up many activities because of my pain,", 7, unmanageable, "I am in pain all the time. It keeps me from doing most activities,", 8, intense, "my pain is so severe that it is hard to think of anything else. Talking and listening are difficult,", 9, severe, "My pain is all I can think about. I can barely talk or move because of the pain," and 10, unable to move, "I am in bed and can't move due to my pain. I need someone to take me to the emergency room to get help for my pain.
The lovely colorful version of this pain scale was created by tumblr user doodleloser, who seems to be a spoonie themselves.

Now, I really like this chart. I will probably print out a copy and bring it with me to doctors appointments. All that being said: There are still some pretty big flaws in this chart re: chronic pain.

(Obligatory disclaimer because this is the internet: chronic pain is not the same for everyone and my experiences and those of someone else with chronic pain won’t necessarily match up. There are obviously some people with chronic pain who found this chart extremely helpful (and so did I, I just think there are other factors that are necessary for it to be useful.)

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Today is National Coming Out Day, and I Don’t Know What I’m Doing.

My post for National Coming Out Day: I reflect on coming out, evolving identity, and how being a dragon would make everything way easier.

Disabled Dragon

So. It’s National Coming Out Day today.

Coming out is such a strange concept. I mean, when I was a kid, I thought it was something you do once–because that’s how a lot of media talks about it. But that’s not true. As a kid I experienced it not being true, I just assumed I was doing it wrong, or something.

I think I was about ten when I figured out I wasn’t straight. I told a couple of my friends. Most of them were okay with it. One of them told me she was the same, and the two of us did that weird “dating” thing that 10 year olds do when they aren’t really old enough to date, like, at all. I think we mainly just held hands in class, really.

I spent the next couple years trying to come out to various groups of people. I never…

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An Update on Posting

I will not be resuming regular posting here. That doesn’t mean I’ll be abandoning this blog completely, just that I’ll only post when I have something I feel the need to say. What this means is that I’ll post things that I have no idea how to sell, things that I want to be available to anyone without requiring payment or subscription, things that I want to get out there as soon as possible, and things that…aren’t really much of anything, but are still something. Most of what I post here will be related to disability and/or neurodiversity. Other topics will probably include gender, sexuality, and privilege. I won’t be posting everything I write on those topics, though.

I may also take some of the threads I write on twitter and put them up here.

There’s a really simple reason for this:

I need money.

See, a very strange thing happened this summer, and it sort of came to a head around my 20th birthday. I became an adult.

That is, I began to perceive myself as an adult in a way that I didn’t before. I didn’t expect this. Birthdays don’t usually actually change anything, at least in my experience. But for whatever reason, this time there was a very definite change in how I saw myself, and that change seems mainly to involve that I am constantly thinking about money. How will I get money? Is it worth losing out on a day’s pay to go to a writing convention, given that the writing convention will help long term with my actual career? What happens if my family’s main source of income goes away? Will I be able to pay for my medication? How do I avoid becoming homeless? Will I die in a gutter?

That last one is a pretty big one.

And, okay, I thought about these things before, but they play a much bigger part in my decision making than they did before.

So I’ll continue posting on this blog, but not in the same way before, because my writing energy needs to be concentrated on writing pieces that I will hopefully eventually get paid for (rather than writing pieces that will help me build a sort of portfolio, but which I do not actually expect to get any money for.)

I have been tweeting regulary, though, so if you’re interested definitely go ahead and follow me over there. And I’ll hopefully be posting more to DisabledDragon, so again, you can follow me there as well.

Why I (Still) Boycott Autism Speaks

(Note: This is the commentary from the link to my “Why I Boycott Autism Speaks” post. Something about the format of my blog made it really hard for me to read, though, so (under the assumption that some other people would have difficulty reading it also) I decided to put it in its own post.)

Since I posted about why I #BoycottAutismSpeaks, they have posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.

I want to make an addendum to this post, however, because I mention my experiences with meltdowns, and I don’t want anyone to take what I say about my meltdowns as evidence that being nonverbal is The Worst Thing Ever. Being nonverbal sucks for me, but its not because there’s something inherently wrong with being nonverbal, and it shouldn’t be taken as a commentary on the experience of other autistic people. It sucks for me because most of the time, I’m not nonverbal. Verbal and written communication are my main methods of communication, and so far I haven’t been able to substitute written communication during the periods in which I am nonverbal.

When I become nonverbal during a meltdown, it’s scary. All of a sudden I can’t communicate, and the people around me are getting increasingly frustrated by that fact. That’s what’s so hard: not being able to communicate.

Communication seems to be a big thing for Autism Speaks–they talk about how autistic people are cut off from their parents/the world, and it seems clear they consider being nonverbal to be a mark of being “low functioning.” But there are plenty of ways for people who are nonverbal to get their thoughts and feelings across, even if finding one that works can be a difficult process, and even if those ways aren’t foolproof. The thing is, communication isn’t a one-person process. In order for autistic people, nonverbal or not, to communicate, you have to actually listen to us.

And if Autism Speaks really wants to help Autistic People, they need to start doing just that.

Why I Boycott Autism Speaks

I meant to link to this on here when I originally posted it, but was somewhat distracted at the time due to circumstances in my personal life, and forgot.

Since I posted this, Autism Speaks has posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help. As a result, I felt it appropriate to add more–but formatting is annoying, and the text was hard to read, so it is now its own post.

Disabled Dragon

I wrote a thing a little while ago, which was supposed to be a short comment on my share of this “why I boycott Autism Speaks” post on a diary of a mom, but then it wasn’t short or really related to that particular post. Basically I accidentally essay-ed, which is a thing that happens.

Anyway, I said I’d post it as my own “boycott Autism Speaks” thing, but then life happened and spoons were none and anyway here are the words (slightly edited because Facebook took away my edit option for some reason?)

(cut because wow, that is rather long actually.)

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Personal Blog

I’ve been thinking for a while about creating a personal blog on this site, where I can talk about random life stuff–food, crafts, dealing with disability, pets, whatever–and I’ve finally done it. There might be some overlap with this blog, I don’t know. Anyway, I’m really hoping to interact more with people on WordPress, so if your interested in that kind of thing, head on over and take a look.

Schedule Update.

Just a quick update to say that I won’t be posting this week. Due to circumstances in my personal life I am not in a good place to share anything I write. I’m not sure yet exactly how I will resolve the schedule change (that is, whether I’ll do two posts in a row or skip this post altogether), but Words of Realms should hopefully stay on schedule.