Author: Anna Eidt

I used to be a singer and music teacher. Now I teach English, craft, paint, write, and tutor. You can find me on Twitter @brainstorm83, Pinterest @annaeidt and Instagram @lousongmade, and contact me at annaeidt@gmail.com (that's eIDt, not eDIt).

Calling All Spoonies! Help me make “invisible illness” more visible with the #spoonieselfie challenge.

Spoonie= someone who lives with chronic pain who identifies with Christine Miserandino’s Spoon Theory- a theory that illustrates how people who are chronically ill must carefully manage their limited energy, or “spoons”.

Stock headache/pain photographers need to widen their scope.

Maybe some chronic pain sufferers look like perfectly made-up young women with perfectly symmetrical features and perfectly styled hair, holding their pore-less, freshly powdered faces while in the throes of pain, but I’m willing to bet it usually looks more like this:

 photo 1 (6)

or this

photo 5 (2)

or even this

photo 2 (8)

(Why would I eat the corn when I can smoosh it against my eyeball? It goes right through you anyway.)

In reality, pain is not pretty. Bras are off, crying is on, and makeup and hairstyles go every which way. Features are crumpled, made-up yoga poses ensue, and there is usually a fair bit of snot, right?

Here’s the challenge spoonies:

Help me set the record straight by submitting your most scrunched-up, messed up, real honest-to-God pain face to annaeidt@gmail.com before February 28th, and I will publish a blog post that exhibits of collection of pain faces so real that people will laugh at us (because who are we kidding- these faces are ridiculous), but also see that our pain is often visible, just not usually to the world at large.

Please include your name, illness(es), and where you are from. [NEW: Also, if you like, include a little write up describing the pain you felt in that moment, and perhaps what coping strategies you were able to use.]

If you are feeling really brave, post your selfie on twitter @brainstorm83 or instagram @lousongmade with the tag #spoonieselfie.

I want all bodies and experiences to be reflected in the images we are bombarded with daily. Time to throw so-called invisible illness into the mix.

Anna

(originally published @migrainebrainstorm.com)

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drugs, drugs, drugs

Brain Storm

Catchy, but a bit oversimplified. I think I knew this even in the 80s. Now I can’t even get clear cut answers from my fantastic cutting-edge brain scientist doctor, let alone mom and dad.

It seems that us chronic painers have endless decisions to make about drugs, and not usually easy ones. While having access to a plethora of medical options is certainly something to be grateful for, it’s sometimes a catch-22. Often the only method to weigh potential negative side effects with potential benefits is to just try a drug, and often this goes badly. With off-label this, new trial that, and drugs to counter the side effects of other drugs, some of us end up with meds coming out of our ears, and consequently, more health problems than we started with. After being burned by narcotics and triptans that (unbeknownst at the time to my GP and me) dragged me…

View original post 700 more words

on ups and downs

This is a re-blog about the migraine-sads, but I suspect the overlap with fibro-sads are infinite. Please read and share your strategies!

***

er… but mostly downs.

Image

[illustration by Emiliano Ponzi: http://www.emilianoponzi.com]

 

Every person has ups and downs. It’s a fact of life. Only Data doesn’t have to worry about these things, and he worries about not having to worry about these things.

Image

 

Chronic pain is just one of many unexpected twists that can make ups and downs so much more dramatic.

There’s some sort of chemical storm, which other migraineurs have described to me as acute depression, that comes (for me) with the onset of attacks and without any other external triggers (like, no pets have died, the world is still spinning, and I don’t have my period). But it’s still damn real! Add the acute depression to the long road of grieving for lost abilities, and you’ve got a recipe for the sads.

 

Image

It goes like this:

migraine attack –> low feelings (despite lollipops and sunshine) –> feeling low about inability to appreciate all the good stuff –> feeling low about how migraine has changed my life –> dwelling in loss –> more pain –> slow recovery –> repeat.

Essentially, it’s just so easy to get down on myself for being down in the first place. But despite sometimes feeling just as sad as that kitty looks, there are two handy shovels I’ve found for digging myself, at least part way, out of the pit of despair.

1) Other people with chronic pain.

They get it. All I have to do is talk to them to know I’m not nutso, that they feel it too, and sometimes that’s enough to stop the self-flagellation. Talking to these people in person is really best, but even a short internet message to share the sads can make a pretty big difference.

2) A bit of research.

It’s pretty well understood now in the medical community that chronic painers are more at risk for things like anxiety and depression, as demonstrated by studies like this, and this, and this, and this one. And perhaps not coincidentally, one of the first lines of defence in terms of daily preventative treatment is amitriptyline: an antidepressant.

It’s helpful to remind myself, as many times as it takes, that feeling low is not some sort of personal failure; it’s a part of life, and a BIG part of life with chronic pain, and sometimes this thought alone is enough to lighten the load.

What do you do, dear readers, when pain drags you down?

Brain Storm

(lousong.wordpress.com)

on courage

courage-is-tiny-lr

[illustration by James of foolishfire.com]

In the not so distant past, I found myself alone on a bench in the middle of Old Quebec City crying my heart out to The Titanic soundtrack, and I was super proud of myself.

Allow me to explain.

I was on a romantic birthday getaway with my boyfriend. The romantic, birthday, getaway, and boyfriend parts of that day were all wonderful, but earlier that day I had received news that ultimately led me to believe that I would not be able to return to work in September. With my hopes and dreams of the previous months all bundled up in the possibility that my employer would accept and implement my requested  accommodations, I was a little more than disappointed to hear this might not happen. Problem was, I went straight from that unpleasant phone call to hopping on a plane for a fun birthday trip, and it didn’t even occur to me that my suitcase, along with two spiffy outfits and too many pairs of shoes, contained a torrent of unprocessed emotion that would spill out at the drop of a hat.

My hat was a veggie burger, ordered because I never did pay attention in French class, and neglected to notice that burger de jardin does not imply fresh, juicy ground beef. So what? Well, according to the National Headache Foundation’s Low Tyramine Diet for Migraine, lentils and tofu are OUT.  So as I finished swallowing my first two bites of veggie burger, realized that it was not cow, and that my whole plan for a pain-free weekend was GOING OUT THE WINDOW, I began to lose my cool.

“Just get another burger,” my dinner date suggested logically.

“I don’t want another burger.”

“Here, switch and eat mine,” he offered.

And uh-oh, I started to cry.

“I need to go. Take your time and I’ll meet you in the park across the street.”

“Huh? I just ordered another beer…”

Once the waterworks began, they were unstoppable. Maybe it was the spectacular street performance nearby, or perhaps they assumed I was moved to tears by the soaring saxophone rendition of My Heart Will Go On playing from a touristy storefront, but thankfully nobody looked at me sideways. Little did I know that simultaneously, my handsome dinner date was turning red under the gaze of the patrons of an entire restaurant who assumed that he had just been the jerk of the century (I did run out crying after all) but was staying behind to finish his beer before seeking repentance.

As he approached the bench mere minutes later, I was finally ready to verbalize, and my disappointment over the recent bad news tumbled out to an instrumental version of Disney’s The Little Mermaid theme. His story of the restaurant glares was immediately funny (to me) and then we carried on with our fabulous weekend.

So why am I proud that I allowed myself to cry like a baby in public on what was supposed to be, and what was, a special evening in an impossibly beautiful city?

Well, because if I hadn’t, I probably would’ve spent most of my energy that evening holding it in, and I’ve done enough holding it in in my life to know that it makes me snippy and ugly and tense, and now, it can contribute to pain attacks that end in tears anyway, and those kind of tears are a lot less manageable that the ones on park benches with Celine Dion’s peripheral support. Instead of letting the fear-of-what-others-might-think rule my actions, I cried in public, and it felt liberating.

As a friend of mine, Martha Blacker, postedsome in a recent status update:

“Being emotional and vulnerable is not a sign of weakness. For those who struggle with this idea, and I mean this with all due respect and compassion, it’s time to step out of your comfort zone.”

…in public.

by Brain Storm @ lousong.wordpress.com

“Fibromyalgia Solved”

A recent article in the Washington Times claims that the cause of Fibro has been found. The cynic in me is tempted to call the title sensationalized and exaggerated, and I am insulted by the author’s suggestion that “those who suffer from this ‘syndrome’ can now rest assured it is not all in their minds,” Um, hi? We already knew that.

But perhaps the findings are promising for more effective treatments? Or is this idea is just another researcher’s flash-in-the-pan…

Thoughts?

Fibromyalgia solved; A pathology, not

in the mind 

New research uncovers the cause of fibromyalgia. Photo: Flickr Commons

WASHINGTON, October 17, 2013— The National Biotechnology Information Center (NBIC) of the National Institutes of Health (NIH) recently released the findings of research funded by grants from Eli Lilly Pharmaceuticals and Forest Laboratories that claim to have discovered a causative pathology (the science of cause and effect)  for fibromyalgia.

The cause of the disease escaped researchers for years. In fact, the condition was considered by many in the field of medicine as psychosomatic (in the mind) because of the variety of symptoms that could not be clinically pinned down and patient reporting was the primary criteria.

Dr. Frank Rice writes of findings at Integrated Tissue Dynamics that has made a major discovery of the cause of fibromyalgia, making diagnosis more certain and explaining the multitude of varied symptoms and effect.

Research has identified alterations in our core body temperature is a culprit, as our blood acts as a coolant in much the same fashion water does in the radiator of a car. Our major organs and active muscles require a constant temperature of about 98.6 degrees Fahrenheit but sufferers cannot maintain a steady temperature.

If we lose too much heat (hypothermia) or gain too much heat (hyperthermia), our body’s primary thermostat, the hypothalamus, struggles to maintain balance. Our blood is the means by which our body and brain get nutrients, oxygen and takes away waste and blood flow is disrupted.

When we use our muscles, particularly the hands and feet, blood flows between the skin and muscles and must be kept in balance. We have internal thermostat controls distant from the hypothalamus called aterio-venous shunts or AV shunts that act as valves between arterioles or veins that supply the good stuff and venules which carry away waste.

Much as the body as a whole, these must be in synch for homeostasis.

The smallest part of our blood supply system is the capillaries which are tiny vessels that act as temperature regulators (among many other functions) and either conserve or release heat. Capillaries run throughout or bodies and are highly concentrated in our hands and feet.  It has long been known that when malfunctioned from injury or another pathological issue, capillary function is diminished causing problems for diabetics.

Now it has been discovered when the AV shunt is defective in function and interferes with capillary function, muscle and skin tissue cannot get proper nutrition or waste drawn away. Additionally, temperature regulation becomes an issue affecting nerve fibers.

One result is a build-up of lactic acid in muscle and deeper tissue affecting the muscular system and causes pain that can seem to ‘travel’ from areas of the body one day to the next and cause fatigue, commonly reported from victims of fibromyalgia.

The sympathetic nervous system which uses the spinal cord for communication and the sensory fibers or nerve fibers that carry signals to the central nervous system, can have their communication disrupted by the results of AV shunt disorder and hypersensitized nerves send pain signals that can ‘travel’ as well.

The American Academy of Pain Medicine featured this research on its front cover accompanied by a laudatory editorial from Robert Gerwin of the Johns Hopkins School of Medicine. To date, the research is confined to women since women seem to suffer from fibromyalgia in greater numbers than men.

According to this research, fibromyalgia has pathology and is not psychosomatic so those who suffer from this ‘syndrome’ can now rest assured it is not all in their minds.

Paul Mountjoy is a Virginia based writer and psychotherapist.

Source: http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/#ixzz2irfMIX00

How dare you.

Lately, living with chronic pain has meant taking on less, cancelling plans often, and avoiding social situations that are loud or just over-stimulating.  Instead, I favor cat naps, reading novels in large print while dabbing my temples with various essential oils, and practicing I-can’t-tell-if-you’re-asleep-or-awake types of yoga. In other words, I have not been the life of the party.

Aside from being bummed about missing out on fun stuff, thinking about this sometimes leads me to believe that I am not as lovable as I used to be. Who wants to make plans with the Negative Nancy who asks you to turn the music down, goes home early, and is likely to cancel on you last minute anyway?

I disclosed this fear to a Wise Woman I know, who replied, “How dare you.”

“Pardon me?”

She asked if I would consider anyone else less lovable because their abilities had changed or were different from my own. And I thought, No! I try hard not to think like that because that sort of judgement is horribly cruel. I love people for so many different reasons, and certainly none of those reasons involve how many social activities they can rack up in a week, or how well they feel on any given day.

“So, if you wouldn’t treat others this way, how dare you treat yourself this way?” Good point, Wise Woman, good point.

It’s important to actively remind myself that my schedule does not make me who I am. And while I worry about not being out in the world enough for my own happiness, I have good evidence that the people I love will gladly consider coming over for breakfast instead of meeting in a busy public space.

I am not any less of a lovable person for becoming more like a cat. Repeat.

(originally posted on June 17th, 2012 on “Brain Storm” @ lousong.wordpress.com)

Surveys for people living with chronic pain and their partners

Hi folks,

I am a new contributor to FighterZine who interested in learning more and writing about the challenges that chronic pain poses in intimate relationships. To start the process, I’ve created two short anonymous surveys.

The first is for people living with chronic pain:

http://www.surveymonkey.com/s/7D92KFK

The second is for people who are in an intimate relationship with someone who deals with chronic pain (lover, co-parent, roommate, best friend, spouse, etc.):

http://www.surveymonkey.com/s/7Y6HNLW

If one these labels applies to you, please take some time to fill out the survey, and pass it on. You can respond with as much or as little text as you see fit.

THANK YOU!!!

Anna a.k.a. Brain Storm