Rio: We're All a Little Different

One of the most challenging things about my fibromyalgia is my response to a variety of drugs. Everyone has little physiological differences, and fibro sufferers even more so, but I have a particularly odd system, which has made treatment of my symptoms quite challenging. Doubly frustrating is the barrage of "advice" I get from people who have had this or that drug work for them, especially when they get upset at me for not being the same as they are.

The first awareness of my abnormal drug reactions came after I received a pain medicine prescription, probably for one of my surgeries. Lortab, which is hydrocodone with acetominophen, did not make me drowsy--it did the opposite. It sped me up, made me wide awake and hyper. This was before I developed FMS, so it made me absolutely manic. These days, it just brings me up to "normal". It is also very effective for my pain, which I'm told is not usually the case for FMS pain.

I've had allergies for a number of years. I took Claritin for a while, then switched off with Zyrtec when the Claritin wasn't working. I'd heard about Benadryl making people drowsy, so I avoided it. Eventually, though, I was broke, and I needed something that would actually work for my symptoms. I took some Benadryl, and found that, while it treats my allergy symptoms, it does not affect my wakefulness at all. Many people tell me that they are knocked out by half a tablet. I can take two,
with zero drowsiness. Fortunately, it does not speed me up like hydrocodone does!

My previous doctor had me try muscle relaxers to help manage some of my fibro symptoms, and to help me get better sleep. After taking them religiously according to the directions, I finally went in to the doctor's office and asked him what exactly they were supposed to DO. He asked me what I meant. I told him that I take them, but my muscles don't loosen up, and I don't get at all tired. He tried me on a different one, with the same results. We gave up that tactic entirely. I still don't know what you're supposed to feel after taking one of them, but everyone tells me that they fall deeply asleep.

Another supposed miracle drug for FMS sufferers is Ultracet. That's another one I took religiously, with no effect whatsoever. Again I asked what exactly it was supposed to do, and my doctor concluded that it just didn't work for me. It's one that I really wish people would stop telling me to try. I've tried it. It doesn't work for me. Being angry at me for this isn't going to make it work for me. I'm glad that
it does help other people, but I'm not so lucky.

FMS sufferers get a great deal of unsolicited advice. I'm glad that other people care about our well-being, but please remember that what works for one person does not work for everyone. I know that some people are helped by yoga, while I know others for whom yoga would make symptoms worse. It's part of the frustration we face with our doctors, with each patient needing individualized management plans. Believe me, we really do want to get better, or to try to live as normally as possible--it's just that finding the best plan for us may take years of trial and error before we come up with one, if we ever do.

What we need from those around us is patience and kindness. We're sick of being sick, and rather than suggesting what drugs to take, could you maybe talk to us about another subject, say, the weather, or what books you've read lately? We're people, too, with interests outside our illness, and it would be nice if we could focus on something else for a change!

Rio also blogs at She Dances on the Sand.

Meet Your Mods: Annaham

Hello.

I saw the noted film director John Cameron Mitchell speak on my college campus a few nights ago, and he told an interesting anecdote about being a "sextra" in his most recent film, the sex comedy Shortbus. He went through the process of being an extra--except, in the case of the film (which features explicit sex, and is, to that end, unrated), he had to have sex, on camera, just like his actors did--in order to "demystify" his status as a film director. He concluded with a particularly salient point: it is important, when undergoing a creative project that involves working with other people, to remind them that you are all in a similar situation.

So, to demonstrate the importance of this point, I will now tell the story of my own experience with fibromyalgia. This is not to say that all of our experiences are the same. We could be, however, in similar situations.

I've been a Type A personality for as long as I can remember. Everyone knows someone who is like this: they're usually motivated to a degree that can sometimes cost them their sanity; they tend to take criticism very personally; they tend to obsess over situations both large and small. In my case, my desire to do well at everything stemmed from personal insecurities surrounding my mild cerebral palsy that I'd had since birth. Many of these insecurities sprouted like particularly annoying weeds, and would continue to grow through the years. Though I was plagued by serious depression during my teenage years (starting somewhere around the time when I hit puberty), I nonetheless continued to push myself to be "great" at everything--especially at academic pursuits.

It wasn't until my second year in college that a few mysterious symptoms descended upon me, somewhat like unexpected houseguests that you barely know (maybe through a friend of a friend of a friend), and they call you out of the blue to say, "We're in town! Can we stay at your place for a while?" They'll leave eventually, you figure. You'd be rude to not let them stay--and you don't want people thinking that you're rude, do you?

I woke up one day feeling unusually tired, with bizarre, unexplainable joint pain to go along with it. The next day, I felt worse—-this time, I had muscular pain and weakness to go along with the tiredness and joint pain. I figured that I was having a bad week, and that it would resolve itself within a few more days. The cycle of strange symptoms continued for more than eight months as I visited doctor after doctor attempting to find out what was wrong and why I was feeling like roadkill. Finding out what was wrong became something of a part-time job, and it was not until a full ten months later that I found a doctor who did not simply tell me that my
symptoms were psychosomatic.

Now, this once-mysterious group of symptoms has a name—-Fibromyalgia. It is a difficult disease in all aspects—-difficult to pronounce verbally, difficult to explain, difficult to diagnose. The symptoms can vary from patient to patient, which is partially why it is so hard to diagnose, and later, to treat.

Out of all of my symptoms that are regularly or semi-regularly occurring—-among
them nausea, irritability, mild to severe muscle and joint pain, and difficulty maintaining focus for long periods of time—the most affecting has been the persistent fatigue. I constantly have the urge to lie down and go to sleep; I know that if I could get away with it, I would probably prefer to indulge these urges and take long naps at least once per day.

Whenever my to-do list for any given day pops up at me like a sinister Jack-in-a-Box, I am immediately tempted to give in to such a base urge and sleep my way into (hopeful) restoration. The way some people are driven by simple human instincts such as sex or nourishment, I am driven by the promise of eventual, ultimately restful sleep. The catch, of course, is that this restoration never works—-I am always exhausted, even after a full eight hours. Yet, I keep pursuing this rather mythical notion of “the perfect sleep,” hoping that all of my efforts to manage my condition will one day be rewarded with such a prize. In some aspects, then, I subscribe to the cultural “myth of control” that the feminist theorist Susan Wendell, who has Chronic Fatigue Syndrome, so aptly describes:

When people are blamed or made to feel responsible for having nonideal bodies despite their reasonable care, when unproveable theories are generated to explain how someone could have avoided becoming ill, when people with disabilities are seen as having their psychological, moral or spiritual failures written upon their bodies, and when every death is regarded as a defeat of human efforts, the myth of control is at work. (94)

It frustrates me deeply that I subscribe to this mode of thinking, and our culture's pathological love affair with the pull-yourself-up-by-your-bootstraps rhetoric certainly doesn't help. I can acknowledge that I do, indeed, accomplish quite a bit: I go to school full time at one of the top public universities in the U.S.; am on the Dean's List of said university; have a job that I enjoy; maintain another blog; and take care of a small, annoying, and very loving dog (Winston, pictured above). However, the peculiarly American obsession with control of every aspect of one's life still haunts me. It's in the disbelieving looks and comments that some people feel so entitled to express when I tell them about my condition. It's in The Secret. It's in our mainstream media's bias against people with chronic health conditions that don't quite have those markers of disability that we've all come to rely on. It's even in out advertisements (Nike's "Just Do It" comes to mind). The message is that if you can't control your body, you have somehow failed.

I believe that this can change, and that it is up to us to change it.

Annaham also runs HAM.BLOG.

Intro Post!

Hello, and welcome to Faces of Fibro. This blog was created to, in part, combat the backlash from recent U.S. print media articles that question the very existence of this condition. I hope to create an archive of the stories, images and experiences of people with fibromyalgia.

Here are some very general submission guidelines:

I want to hear about your experiences with this illness, in 500-900 words. Here are some sample topics to get you thinking (and writing):

--How/when were you first diagnosed?
--What has been the biggest challenge so far in dealing with your condition?
--What have your experiences with telling other people that you have this condition been like?
--Do you believe that there is a stereotype of people with chronic health conditions? If so, how do you personally fit or not fit this stereotype?

These are just sample topics. You can write about any aspect of fibro and your experiences with it, really.

Please email your submissions to annaham AT gmail dot com. You may submit under a pseudonym, but use an actual name, please. Pending approval, I will have your submissions up on the blog in as timely a manner as possible. If you want to include a picture of yourself, it is welcome and encouraged. (Max of 350 X 500 pixels, please.) If you have a website or blog that you would like to be linked after your piece, or biographical details that you would like to include at the bottom of your piece, please send either of those with your submission as well.

I look forward to reading your responses!