Category Archives: disability

13 Fibromyalgia Moments

naturalhabitat

In my natural habitat.

  1. I slept in until 10:30 this morning, but am ready to go to bed right now. It’s just after 9:00 PM. This feels like a failure, somehow.
  1. Wikipedia defines fibromyalgia as “a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndromebowel or bladder problemsnumbness and tingling, and sensitivity to noise, lights or temperature.” Fibromyalgia does not sound so bad, defined this way. Any person with the condition, however, will tell you that it is much worse than this definition makes it sound.
  1. Something a lot of people do not understand about chronic pain is that it is constant. I am always in some kind of pain. Some days, my pain level is a 1 or a 2 (those are great days); some days, it’s an 8 or a 9 (usually because of rain, or because I did too much, exercised too much, or overcommitted myself the day before). Most of the time, my pain level is between a 4 and a 6. The rock band Hole titled their 1997 compilation album My Body, the Hand Grenade. My body is a land mine that can detonate internally—touch it the wrong way, and it will explode with symptoms.
  1. Even the number scale doesn’t really cover the symptoms that I deal with on a daily basis: pain (it usually feels like I’m wearing an overcoat of bricks), fatigue that feels like I’ve taken at least 4 Benadryl pills, and very strange symptom trinkets like nausea and dizziness, the skin on my face getting extremely hot, and/or feeling like the soles of my feet have been lit on fire. There are more weird symptoms, but listing them could be an entire piece in itself.
  1. The pain itself can take certain forms other than the aforementioned overcoat of bricks: burning, biting, pin-and-needling, scratching, dull aching, shredding, or, my least favorite, pulling. Pulling pain feels as if my bones and muscles are being pulled toward the ground, like gravity decided to weigh on just me a whole fucking ton.

Most of the time, my muscles are as tight as closed fists; this gives new meaning to the phrase tight body.

  1. When the less-common shredding variety of pain occurs, all I can think is, This would be what pulled pork would feel like if it were able to feel.
  1. When I was first diagnosed with fibromyalgia, in 2007, I thought that the name of my new disorder sounded like the name of a gross fish that swims along the bottom of the ocean and eats dead things. That, or the name of a character from George R.R. Martin’s A Song of Ice and Fire series: Lady Fibromyalgia of House Musculoskeletal. Unfortunately for me, it was, and is, neither.
  1. A close relative asked me during a phone conversation, “When you say you don’t have the energy to get out of bed, what do you mean?” I didn’t know how to make the language of that statement any more plain.

I mean that I do not have the energy to get out of bed, I replied.

  1. There have been times when I have attempted to read—to distract myself from my symptoms—and the words look like they’re starting to march off the page. This is one of my indicators of level 8-plus pain or severe nausea.
  1. I have a lot of guilt about not being able to do certain things, especially if social activities with family or friends are involved. Are they thinking If she would just [______], she could make it to the party/art opening/camping weekend?

My partner is quick to reassure me that family and friends would much rather see me when I am feeling well, and that it’s important for me to take care of myself. Despite my frequent worry about this topic, his reminders help. But the expectations that “nice” women are up for anything, are cheery, social, ever helpful, able to go to parties and events, look pretty at all times, be charming and friendly and talkative and make other people comfortable by not showing that they’re upset, annoyed, in a funk, or (in my case) in pain at all–still haunt me.

  1. I cannot remember what it is like to not be in pain. Even being at a level 1 or a 2—usually thanks to medication—seems strange to me. Being in at a low level of pain always feels like I am in another body, like I’ve borrowed someone else’s body for a little bit.
  1. If I had to choose a superpower, I would want to be able to projectile vomit rotten sauerkraut onto people who say that fibromyalgia does not exist, that there is no “physical evidence” for it, that it’s a women’s disease, so we must be making shit up.

The central idea in this attitude, as with the skepticism surrounding chronic fatigue syndrome, chronic Lyme disease, and more—is that women who have any of these “mysterious” diseases must be exaggerating their symptoms for attention, embellishing descriptions of their daily pain to get drugs, or dumb enough to have been convinced by drug ads on TV or news articles or WebMD that they have these “made up” diseases. There’s a pervasive cultural idea that men’s pain should be taken seriously—if a man is in enough pain to visit a doctor, he must be in real pain. The other side of this coin is that women’s pain should not be taken seriously—a woman in pain who’s concerned enough to visit a doctor for treatment might be just hysterical or anxious.

  1. Every single thing that I do is affected by pain, and I have to live my life accordingly.

To people who do not have chronic pain, this sounds like I have given up. To me, it sounds like common sense.

 

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Beyond Human: The Heaven’s Gate Cult, Transhumanism, and Me

A selfie with one of the Heaven’s Gate (post-mass suicide) photos, as shown in John R. Hall’s excellent 2000 study on new religious movements, Apocalypse Observed.

[Originally published on Disability Intersections on  March 21, 2014.]

Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.

–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)

I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds,  on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.

Continue reading

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raindrops

rainisapain[Description: Two-panel line drawing of a rainstorm. In the first panel, text on top reads “Other people see rain…”; the accompanying illustration shows a happy person wearing a raincoat and saying “Good thing I have my raincoat!” The second panel has top text as well, which reads “I see rain…”, and this panel’s illustration shows the cartoonist standing in the same rainstorm, with knives of varying sizes replacing raindrops. The cartoonist’s speech bubble reads “SHIT” as straight lines on both of her shoulders signify intense pain.]

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Quick update: My work, elsewhere

Hi, readers! I know I’ve been neglecting ye olde blog (and hopefully I will start to do better on the whole “updating it regularly” thing soon!), but I wanted to draw your attention to a couple of things in which I have been involved lately:

Last week, I wrote a guest post for Tiger Beatdown on Lars von Trier’s 2009 film Antichrist, and how it relates to the pop cultural depiction (or lack thereof) of depression and pain, women and emotion, plus the unintended backlash that the expectation of “strong lady characters” has wrought. Go and join the discussion if you feel so inclined. Content warning for discussions of some graphic violence that the film depicts.

s.e. smith and I recently wrote an article (on disability culture on the internets and online feminism, naturally) for the latest print issue of Bitch Magazine, which is currently available for purchase or download. I also did the illustrations, which is kind of (read: EXTREMELY) exciting for me. We were interviewed at length by Kjerstin for the Bitch Radio podcast as well. Hooray!

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Self-Perception vs. Reality

[Description: Four-panel cartoon; first panel is labeled “Self-Perception and features a line drawing of Annaham happily gobbling pills while excitedly saying “PILLS!”; the other three panels come under a heading that reads “Reality.” The second panel features Annaham grasping a bottle of pills in one hand and a single pill in the other; a thought bubble reads, “If I take this for pain, does that mean I’m an addict?” The third panel depicts Annaham with a worried/pained look on her face, plus a thought bubble that reads “OH FUCK.” The fourth panel pictures Annaham lying on the ground in obvious pain as tears flow from her eyes. A thought bubble reads, “If I take pills, I will become addicted. WILLPOWER.” The text at the bottom right of this image reads “5 minutes later.”]

Variation on a theme. Click for a higher-quality version; I’m not sure why WordPress shows the image as horribly pixelated and I can’t seem to fix it.

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Makeup post: Urban Decay 24/7 Eyeshadow Pencils

[Description: Photo of four eyeshadow pencils of various colors.]

I need to take a moment to rave about Urban Decay’s 24/7 Shadow Pencils ($20 US) and how fantastic they are. These are basically eyeshadows in pencil form, and I’ve found them extremely useful, but perhaps not for the reasons you’d imagine.

As most readers of this blog know, I have moderate to severe chronic pain and fatigue issues due to fibromyalgia. Cosmetics, for me, are usually not an “everyday” thing (save for lipgloss or lipstick, because those take about 15 seconds to apply if I’m not doing anything fancy) because of the time that it takes me to do a “nice” makeup job. More often than not, the time it takes for me to do “nice” makeup translates into lost energy and/or more pain. Pain due to repetitive motion is one of those things that is outside the realm of most abled peoples’ experience, but on my bad days, putting cosmetics on–and screwing it up, and more often than not having to start all over again–can be physically painful. And yes, some people may be thinking, “Yeah, RIGHT, putting on eyeshadow can’t be that painful!” For me, though, it can be, and I’m sure a lot of people with fibro would say something similar. Just try putting on makeup when your arm feels like it’s been weighted down with a huge piece of iron. After a certain point, it just doesn’t feel worth it anymore, particularly if you’re in a lot of pain and yet you keep making mistakes with makeup application because you are in pain. Parts of it seem very chicken/egg.

Enter the UD 24/7 pencils. One or two swipes of the pencil is all it takes, and the actual shadow component of the pencil is large enough that it’ll cover your entire lid (downside: can lead to some imprecision). Granted, these aren’t going to completely prevent pain from repetitive motion, but the one or two swipes and you’re done thing is a huge improvement over having to apply eyeshadow primer, then apply shadow with a brush, then do it again if you screw up, then clean the brush(es) after you use them, et cetera. I haven’t tried blending these yet (and once I do, I’ll write about the results), but I will probably end up getting a few of these because they are awesome. I have the one in Sin (a very shimmery pink champagne/beige shade), and would like to try Barracuda (black with silver shimmer), Delinquent (shimmery eggplant purple), and Mercury (gunmetal gray). If you have chemical sensitivity issues, I am not sure if these would be appropriate given the list of ingredients (scroll down the page for ingredient lists; each pencil may contain different pigments and such).

In short, these things are awesome, and I highly recommend that you give them a go, if you’re so inclined.

[A slightly different version of this post appeared on my Tumblr.]

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