Tag Archives: fibromyalgia

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.

 

Tagged , , , ,

Painkiller Potoo

painkiller-potoo

Click for large version.

[Description: Line drawing of a Potoo bird with its lower body shaped like a tablet; the tablet reads “M365.” To the bottom right of the Potoo is the cartoonist, grimacing in obvious pain. The two are having a conversation:

Potoo: Hey dude take yr fucking pills already. Suffering through yr pain is a rlly bad idea.

Annaham: That is a good suggestion; thanks, Painkiller Potoo.]

Painkiller Potoo knows what’s up.

Tagged , , , ,

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

Tagged , , , , , , , , , , ,

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.]

Tagged , , , , , , ,

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.

Tagged , , , , , , , ,

Conundrum

[Image description: Line drawing of Annaham holding a hot heating pad in her hands and looking confused as question marks surround her. Text: “Chronic pain conundrum: Everything hurts — where to put the heating pad first?”]

 

Tagged , , , , , , , ,

Quick Signal Boost: BADD 2011

I haven’t been able to put together a post for Blogging Against Disablism Day (BADD) this year due to other commitments, but be sure to go check out the list of this year’s posts, compiled by Goldfish at Diary of a Goldfish. As with other years, I am sure that there will be many excellent and thought-provoking posts!

I’ve contributed to BADD in the past, so now may be as good a time as any to drop some links: a poem, a bingo card, the first bingo card (cross-posted at FWD; not for BADD, but perhaps necessary for context of card #2).

Tagged , , , , , , , , , , ,
Follow

Get every new post delivered to your Inbox.

Join 37 other followers