‘Dear Unbeliever’ :what I would say to the fibromyalgia doubters

The Invisible F

Photo by Mnxan Opena Photo by Mnxan Opena

In the immediate years following my diagnosis with fibromyalgia (fms) I struggled tremendously with people’s disbelief and confusion over my pain.

That people couldn’t comprehend that a person could look perfectly well on the outside while going through a raging storm of pain, incredible exhaustion and other symptoms baffled me. The lack of comprehension wouldn’t have been so bad if it wasn’t often followed with judgements and suggestions of how I could shake off my pain with positive thinking, meditation and the host of never-ending recommendations.

I was still coming to terms with my diagnosis, learning how to navigate life with a chronic pain condition and this was complicated by the need I felt to validate my suffering to others who didn’t seem to believe (doctors included). Looking back I wish I had been firmer, braver and bolder. Here are some of the things I wished I…

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Late Nights…

Most people do not know that I struggle with fibromyalgia. Chronic deliberating pain that often makes it impossible for me to complete simple things….like combing my hair and buttoning a shirt.

I received the diagnosis of Fibro and borderline Lupus in the military after being in for 16 years.  Just like many others, I thought my persistent pains and aches were just a part of the toll of running, numerous deployments and working in difficult enviroments. After 2 days of intense all over pain, my doctor informed me that my body was undergoing a major change. There was no cure and that my symptoms would get  worse as I got older.   I begin to realize that “late nights” would take on a different meaning for me.

My love/hate relationship  with my body began shortly after that. “I will fight this!” I vowed. I didn’t realize how hard the battle would be. After retirement, I continue to exercise and eat right. My body fought back…with a vengeance. Reminding me that no matter how hard I tried, It would always be ahead of me in the race. Always one lap ahead of me…the only thing I could do is try to catch up.  To keep running!

My laps are never easy. My body gives me signs and symptoms when a pain flare is about to occur. My body warns me of impeding rain, I plan accordingly. It tells me when I have been on the go too many days in a row, I take a day of rest.  It warns me when I am stressed, I plan a solace …

I bargain with my body daily. Some days I win, and some days I lose….never graciously. My defeats  come with intense stiffness, excruciating pain, sleepless nights, light sensitivity, pain and memory issues  Some flares last for a couple of hours to several days. My pain is worse at night, when I am alone and the world is fast asleep.  Late nights curled up in a ball under a heated blanket filled with insomnia and pain. Some nights  I have often sat outside watching the stars….praying….waiting on the sun.

When I wake up, I feel like a new person….literally I am.

My ability to push through my pain daily keeps others wondering.  I look great on the outside, but  Im constantly trying to keep up. My high pain tolerance level allows me to operate normally on a pain level that many would have to seek medical attention for.

My trips to the ER  come every 4 to 6 months. The nights when I can no longer find a home remedy to bring my pain level down. Over the counter meds, epson salt baths, yoga , exercise and meditation lose their strength.  I become immune to regular pain relievers . Even prescribed narcotics cease to dull my pain.  I sit for endless hours in an ER to receive a shot that lulls me into a peaceful state.

It is during this time, I often mentally battle with my ability to continue on this journey. It is during this time I understand how many people with chronic pain have opted for the presumed “easier way out.”

I’m grateful my spirituality  prevails and the morning brings a joy!  I count my blessings after late nights and I am truly thankful….thankful that Im not confined to a bed or a wheelchair. Thankful that I know that each  flare will pass….eventually.

Thankful to see the sun peek through, reminding me that I  made it through to another beautiful day.  Thankful that through it all, I’m still running…

If you are struggling with any pain, whether physical or mental.I pray  you find the strength to wait on the sunrise.

Peace, Love & Empowerment

Vo-GIRL-CRYING-facebook

Fighting through the fog..

Favim_com-18493So this weekend I was able to reflect on many things and reflect I did…Unfortunately I was admitted to the hospital on Saturday. I have battled fibromalaygia for 7 years and often the chronic pain I experience is unbearable! I am always in pain, however some days, I have what is referred to as a flare. My children often push me to go to the ER on my  worst days and this weekend I obliged…even though I knew it would not be pretty…My intense pain is always met with a shot…in my hip.  Its not fun as you can imagine, but I have pushed through for many years.

This weekend, I felt different…the doctor informed me that I would be staying over night, because my blood pressure was low. Needless to say over night, turned into a weekend and I reflected….Although I often keep my struggles private…I  have learned that crosses can not be beared alone and as I sat in the hospital bed…several reminders were dropped into my spirit.

I thought back over my life, my journey, my accomplishments and I was reminded about all I have given and done for others over my time here on earth…its been too much too count. I was reminded that I must take a little more time for me..I was reminded that I was expendable and also informed that I was not getting any younger. Reminded that some things are not that important and that some people are very important!

Reminded that I must not continue to give until I am depleted…My 2015 resolution was once again dicphered and I analyzed it well.   I fought through the fog of fibro and will continue to fight…

I was thankful for the family and friends who checked up on me.. the ones who reminded me of all the “reminders” I often forget about,,,grateful for the texts and phone calls.

This post is simply a reminder to each of you that life is simply what you make it…live it and live it well, beacuse you only have one and that “one” is valued by many.

Peace, Love & Empowerment

Steph

http://www.I-Speak-Female.com

http://www.virtuousvibes.com

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.

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