During our spring break, I made a promise to myself that I would use different parts of my body. I would give my right side, arm & back, a rest from blogging. I would give my physical therapist a break from having to place my vertebrae back in their proper places every. single. Friday. morning. POP, BANG, BAM. He uses a pen to mark the vertebrae that has wandered out of alignment. I call those marks my temporary tattoos. I look forward to Fridays like a child looks forward to Christmas morning. I am able to do things during the week because I know he will put back to rights.
Or as close to right as I’ll ever be.
I have a pin board on Pinterest titled, ‘my old body.’ (Amy_B_Saab). During my vacation i used my iPad to search for advice on coping with the 90-year-old body that I reside in. I’ve been in my 90’s since 2007. While my search for Fibromyalgia was informative, I kept coming across pictures of spoons, or jewelry with spoons. So I googled spoons & Fibromyalgia…i came across a story about two woman. One woman had fibromyalgia & the other women knew of it, but didn’t understand it. (I will name the women…the one with fibro is Amy, the other is Hannah.) Hannah knew Amy had fibro, but didn’t understand its effects to Amy’s daily life. To explain what her life was like, Amy gave Hannah 12 spoons. Twelve spoons represent the energy Amy had each day. Then Amy told her Hannah to describe her day. “Get up & get dressed & go to work” Amy took two spoons. “No, first you have to eat, so you can take your medicine. You have to choose the clothes that will not pinch or squeeze, that is one spoon. I have to decide if I want to shower, if I do, that is another spoon”
Every single choice is made with consequences. This is my life. To break down the choices of deciding something is worth the risk, or if i don’t mind not having any spoons for tomorrow.
Somedays I feel younger, usually this occurs when I am feeling good enough to ‘over do’ everything, like to tear down the ivy creeping over the neighbor’s fence. This ivy has the intent to wrap it’s victims in a tight embrace, slowly killing what it has grabbed hold of. The ivy I ripped from the fence this past weekend was heading toward my hydrangeas. Ivy is a killer. That choice took five spoons & going to bed at four o’clock in the afternoon.
Fibromyalgia is like ivy. It grabs so tightly, that getting up & out of a chair is an effort, an event that I have to plan for. Every single thing I do, I have to weigh the consequences. Consequences of every action & reaction is in every decision I make every single damn day.
“Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain & tenderness in the joints, muscles, tendons & other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression & anxiety” This diagnoses is usually given by a Rheumatologist.
Fibromyalgia can slam into people who have suffered a badass physical trauma. Supposedly, our brains can break a bit after hurting very badly for a long time. The nerves that fire pain from the injury lose their off switch. A diagnoses of Fibromyalgia usually is given a year or two after a severe car accident, or a very bad fall, or having a surgeon break your pelvis, and/or strong, constant emotions, like ‘walking on eggshells’ & outright fear. Domestic violence victims can suffer from Fibromyalgia. Fibromyalgia can come on slowly as well. Someone can suffer from the flu, & while the cold symptoms go away, the pain during the fever, does not.
My story, briefly told…2003 last baby, my left leg, front thigh & low back HURT like a mother…after visiting many doctors & having MRI & CT & steroids injected into my left Sacroiliac joint…it was decided that the joint was bad. The joint felt like a bad sprain. Ever sprain your ankle or wrist? I had that pain on my butt. My orthopedic sent me to a surgeon in Huntsville, Alabama, he was to remove the joint & fuse the bones together.
He broke my pelvis, then lied to me & said, “um, you have a dislocated pubic bone, you should have your physical therapist fix it.” Ok. So six years go by. All doctors had given up on me. I was sent to the end of the road, a pain doctor. Last May, my pain doc yelled, “WHAT ARE YOU TALKING ABOUT?! YOU KEEP SAYING YOU HAVE A DISLOCATED PUBIC BONE, NOBODY HAS A DISLOCATED PUBIC BONE!!” I love my pain doctor :). Due to chance, I had brought my X-ray taken after the fusion of my left S.I. joint. He places the x-ray against the window of the exam room. And he freaks out.
“OH MY GOD!!!! YOU DON’T HAVE A DISLOCATED PUBIC BONE!! YOUR PELVIS IS BROKEN, YOU’VE BEEN WALKING ON A BROKEN PELVIS FOR FIVE YEARS!!”
(This is important. If a patient is told they have ‘something’…that isn’t true, THAT IS A LIE. The patient will tell every doctor they meet the same lie the doctor told them. BUT, all these doctors do not correct the patient. The doctors hear the lie & dismiss it as a mistake on my part. So if a doctor tells you something that doesn’t seem right…ASK QUESTIONS!)
“What do I do?” i asked Dr. K.
“If you were my wife, I’d send you to John Hopkins, Tulane or Vanderbilt. I would send you to an Orthopedic trauma surgeon.” Says Dr. K. I went to Vanderbilt b/c it was four hours away (sitting in a car longer then 30 minutes seizes my muscles), Dr J.M. Evans put me back to rights as best as he could.
The trauma surgeon told me that he doesn’t see patients like me WALK into his office. He said to break a pelvis it takes a bad car wreck, being hit by a train or falling out of an airplane.
My children don’t really remember the powerhouse I once was. I was once a woman who couldn’t hold still, i was strong as a pack mule. I have three children– all they remember is me, broken. My children are strong, caring & too mature for their ages. They know how to cook, do laundry, vacuum & mop. My children know that I get myself lost on my computer to find distractions so I don’t have to feel as much.
My 12-year-old daughter has run over 200 miles this year, for cross-country & track. She has had two track meets. They last five hours. My husband goes, because he can sit for hours. I’ve never been. The thought of sitting that long is akin to sitting on a bed of nails with ivy growing around me & squeezing to the point nauseousness.
Last night after my twelve-year-old daughter came home (after 7 hours of school, three flights of stairs over & over, then running three miles) she sits down & makes me a schedule so that I can see one of her short races. She map quests the school where the event is being held, she staples all the papers together. She does this…
The last post-it note is on my bathroom mirror (she left three post-its). Her efforts took about an hour. It would have cost me a spoon to do what she did. I will gladly give her the spoons required to see her 10 minute race.
I have to plan out every damn detail of my day. I think there are benefits of becoming slow. I think they have improved my photography. I sit & edit my images. I buy flowers & dig in the dirt. I play with graphic design. The things around me shout to be noticed & I never would have heard or seen them, as well as I do, now that I am slow. I am a mother of three, I am an artist, photographer, keeper of husky, snuggler of cats, a reader of many books, a muncher of popcorn when I’ve lost all my spoons & have to go to bed.
I am not just Fibromyalgia or a broken pelvis. I try not let it define me. I try to put it out of my head. I’d rather put my hands in the dirt, or my camera to my eye. and i try to forget to count my spoons.