Category Archives: fibro

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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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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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?”]

 

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x’ed

[Description: Line drawing of a nude young woman with shoulder-length dark hair and hairy legs; she stands with arms extended. She has a pained expression on her face, and arrows of varying sizes pierce her body. Both her chest and crotch areas are covered with large “X” marks.]

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Detached

[Description: Line drawing of a woman in a bed, sitting up against the pillows as her eyes—popping out of her head—focus on her body parts, which have detached from their sockets and are floating around the room.]

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OF COURSE it’s time for meds, if a rocketship crashes into your head

[Image description: A line drawing of a young woman with a quizzical facial expression who has a rocket embedded in the left side of her head. A thought bubble to her right reads, “It’s time for Vicodin.”]

Ink on paper, 2009.

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BADD 2010: “Exhibition”

For Blogging Against Disablism Day this year, I thought I’d share a poem that I wrote a while ago that I haven’t shared until now. I was going to turn it into a spoken-word piece but never got around to it. Better late than never, I suppose.

Exhibition

On my side
side/ways
eyes brain neck
spinning along with
everything else
and I haven’t even been drinking

this is not a workout
and yet, I am sweating
the body over (re)acts
does not know quite how to
respond
and I wish I
could say to
every non-believer, every “skeptic”

everyone who’s ever asked:
what’s wrong with you
why do you walk like that
is something the matter with your foot
what is it
why aren’t you getting better
why isn’t your attitude more positive
why can’t you

almost always accompanied
by one of these:
at least you can walk
at least you’re smart, so you can deal with this
at least you’re not homeless
or starving
or living in a Third World country
you’re luckier than most
how bad could your pain be?
just take some aspirin
stop complaining
why
why
why

for every
you should take vitamins
just work through your pain
I have pain, too
you’re too young to have something
like that
why are you so bitchy
that I hear
I smile a little bit, inside

because: someday
many of these people
will also know
pain

but for now
this is my reality
and I wish you could see it
feel it
for only a minute
and then maybe you’d
think before you
talk at me
or offer meaningless platitudes

every word that exits your mouth

random stranger,
friend of a friend,
asshole on the street who tells me to smile
because it can’t be that bad
every word
means less to me
than I do to you

I’m not your vehicle for
public service
I am not to be used
to show the world

what a great “liberal,” progressive kind person you are
or to be subjected to
your pity
masked as concern
so please step out of
my way
once I can stand, that is
for now—lucky for you
I am confined to vertigo
In my own carpeted purgatory

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