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)

‘Tis The Season…

It’s the season for merriment, goodwill, and unbridled holiday joy. For those of us with chronic pain, it’s also the season for increased pain, fatigue, and stress. I know I’ve had a ton of holiday obligations with work interspersed in between. I’m sure all of you have felt pressured to “get with the (holiday) program.” I’ve been exhausted more than normal and been in huge amounts of pain. My last two Christmases are today, so the light at the end of the tunnel is in sight!

My New Years will surely be a mellow one. My poor body can handle anything else. Lots of love and gentle hugs to you all in this holiday season!

Chronic Fatigue VS Christmas

It is,late at night like this, that I take the time to ponder if Christmas is going to by-pass me .  The fatigue everyday, leaves me napping by 3 pm.  The fibro stiff joints and muscles have me sitting on a heated blanket each morning while enjoying my one cup of coffee. So technically I truly only have 4 hours to attempt to accomplish anything. Christmas prep needs to start earlier for me but still I feel like I am simply standing on the side lines.

I catch myself comparing this year to the years before the pain and fatigue. I have to stop myself, it won';t help and will ultimately hurt me more. So I buy alot of gifts on line, I make a list in late summer and on good days tackle gifts for one or two on the list. Now, I have wrapped painfully or bagged the goodies,and it is way past time to be baking. Because both of my children are grown and moved out, I am eliminating cookies. I am down to preparing the bare basics…..If I stop and rest tomorrow I just may catch some true Christmas, but our counters will be bare.

This year, I want Christmas to win, I want to feel well enough to feel the true spirit. I want to enjoy moments with my daughter and husband. I want to be there …..with the extended family. Tonight, I think I am  choosing, I am taking  control, not the fatigue and pain. I want to participate, I am choosing less traditional foods, I am looking at my tree and tomorrow I will smile. For now, i will rest.

Vote for the Best 2014 Health Blog

http://www.survivingwithfibro.wordpress.com/

I was chosen and trained by the NFMCPA & LAPAN for those 10 million people in the United States living their lives with Chroniic Pain.

It will help our cause if my blog was chosen to be one of the Best Health Blogs of 2014.

Please vote and share every day thru the end of December on FB and Twitter. Thank you!

Fibromyalgia and Chronic Fatigue Do not Define Me

There are many days that that the pain seems to be all I have.  This disease decides what I can do and how I can do it. That is all true but I am learning to pace myself. I am one of one million people who live with chronic pain. But I am also stronger than I ever imagined and I am Courageous.  I know I am not alone I have found The National Fibromyalgia and Chronic Pain Association and  I have a mission for our voices to be heard.Not just the pain filled cries but the hope and perserverance. Let courage define me.

drugs, drugs, drugs

Originally posted on 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 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)