Tuesday, May 3, 2016

What More Can It Take?

I used to ask myself, "what more can Fibromyalgia take from me?"  Years later, I looked back and understood that its theft had been insidious, subtle.  Even I, the one who was hiding the progression from loved ones, did not always notice that parts of my life had come up missing. 

The big changes were obvious - it had already taken a job that I enjoyed, my independence when I didn't feel safe to drive, hobbies that required any physical stamina, and my pride in a drug and alcohol free life.  Ironically, now that I would enjoy an occasional glass of wine or a cold bottle of beer, I cannot drink because of the medications.  Let me be clear though, I was never an addict.  My parents are and after spending my childhood watching their behavior, I became militant about not partaking myself.  And yet, here I am, forced to pop pills, every color and flavor and side effect.

There were the small changes too - a compromised energy level, never feeling as if I got enough sleep, pain that would come and go, and also seemed to pack its bag and visit areas of my body like it was a hobo on a train.  What Fibromyalgia consists of is beyond words.  The list is too long. 

Sometimes I howled the emotional pain of it all.  I sat at my desk in the darkness and wept, hiccuping, rocking like a toddler that was waiting for a mother's arms to console her.  But there was no mother and I was a grown woman with children of my own to protect from my suffering.  I only broke down in the porcelain & tile chill of the bathroom where if you cry too hard and begin to gag, the toilet is right there waiting to be hugged and take your agony-vomit.

The disease is not supposed to be there.  It's a foreign invasion of your own body.  Your. Body.  Something that is supposed to belong to you, your forever friend, has betrayed you by allowing this monster entrance.  It settles into a  chair right next to yours at the dinner table of your brain so that you may have conversations over who is the boss.

All of the stages of grief - denial, anger, bargaining, depression & acceptance - are about who is in control, you or the disease.  The first three are when you still think you're in control, or you're desperately trying to hold onto the belief that you are.  The last two come when you've realized that control is air between your fingertips. 

You really can wake up on a Tuesday morning, happy with your life, a 'to do' list for the day waiting next to the coffee pot and a few hours later, you're standing at that same counter, staring at the check mark beside "Dr. Smith @ 2 p.m." and knowing something just went so wrong. 

All you get to control are the details.  Which tests to have, medications to take, treatment plans to sign off on, who you tell and what you tell them about your illness.  You can do everything right & still progress.  Knowing all of that is acceptance.  As cliche as it sounds, it does get easier as time goes by.  You'll still have bad days though. 

A week ago today, I was supposed to have lunch with my granddaughter, Ava.  She's six years old & in Kindergarten.  After two passes by her school, I realized that every parking spot for two blocks was taken by other grandparents.  There was no way I could walk that far, not safely and not without forcing myself into a flare.  I'd been cycling through them for weeks and knew that my body was begging for a break. 

The second my brain made the decision, my heart broke.  I was sobbing uncontrollably, clutching the steering wheel and easing over to the curb so I could break into a million pieces without wrecking the car.  I could see the brick of the school and it seemed so close but so far away.  The black haired, freckle nosed, teeny-tiny pixie that is my Peach was inside, eating a hamburger & drinking a carton of milk without her nana.

That evening, I drove out to see Ava.  I took along a big ribeye steak, our favorite thing to eat together and I hugged her close while she told me that she wasn't upset.  I knew her parents had coached her to say it, but I also knew it was true.  She and I put on pink lip gloss, we talked about fishing & she told me about a walleye she caught.  She knelt on her table at home to get closer to me, just like she perches on my desk here.  I cried silently all the way home & once there, I went into the bedroom and stared at the ceiling while rubbing the pad of a thumb over my shiny new emergency medical dog tags. 

Everyone tried to make it better.  They tried to soothe my sadness, give reassurances that I can make it up to her, there's always next year, and that she's so young, she won't remember it anyway.  But that one day has set me back. 

I have been reminded of the truth:  Sick people can get used to things that normally would seem impossible, unthinkable.  Pain becomes background noise, a not so pleasant soundtrack for the day to day minutaie of our lives.  It's when pain goes to its next level, when it turns to sharp edged agony that leaves us afraid to breathe because the rise and fall of our chest, while a primal instinct, means suffering.  We are narcotized by medications and our need to forget that we died already.  The person we once were, the "before" version is gone & after grieving the loss, we are left to build a life worth living with the "after" disaster. 

That requires a lot of work from a mind and body that are always tired.  But you get there, you really do.  You quit seeing your disease as its own evil entity to wage war against & come to terms with it being you too, a part that needs your care and attention.  With time and piece by piece, you rebuild until you look in the mirror and all you see is this life.  The old one has faded and is only remembered when something brings it back into sharp relief.  That's when you stumble, when you may stagger and fall to your knees.  Sometimes, you just have to stay down and pray.

I don't know how to be sad for long.  I don't know how to cry for more than 5 minutes.  I have no idea how to lose control.  I'm hardwired and self-taught to be strong, unbreakable and even cold at times.  If I didn't teach myself those skills, I never would have survived my childhood.  Now it's the only way I know how to survive the thing that will probably kill me anyway.

I'm scared.  I don't know what I'm more afraid of - how bad the pain could get, of dying from my disease, or of giving up the last thing I can control - how I reveal being sick.  That's what more Fibromyalgia can take from me.  I'm afraid if I take all of the medication they tell me to, if I rely on them for relief, one day it will all quit working and I already know that I can't live that way.

Friday, November 13, 2015


It's been a long time since I've written about being sick.  Just that word makes me both cringe and want to fight.  I want to say, "no, I'm not sick, I just have Fibromyalgia."  But that's like saying, "having cancer doesn't make me sick."  I'm ridiculous sometimes. 

For the few of you who haven't heard, Adele has a new single out called, "Hello".  I read an interview with her in Rolling Stone and she explained that it's not about a former lover, as one might assume.  Instead, it's more of a conversation she's having with herself.  The whole album, 25, is in a similar vein. 

After reading that, I listened to the song again (who are we kidding, for the millionth time, really) and it started becoming, for me, about life in the six years since I was diagnosed.  What I might say in a phone conversation with the woman I was at the beginning.  I quit calling her a long time ago.  I quit talking about myself a long time ago.  I still tell my loved ones the basic medical facts from each new doctor's appointment but that's all.  The words to the rest became a loop of same shit, different day. 

There have been no new ways to explain my emotions or thoughts, nor the physicality of this illness.  I think my personal best came one night when I said that the pain felt like a potato peeler was being scraped up my legs from ankle to knees, just stripping away bone in neat, clean shavings.  How do you beat that horror story of words?

Or the others that came before, trying to describe what felt like a collarbone breaking while you typed, or your ankle suddenly feeling like it snapped while walking into the store, the pain so vicious that you had to drag your foot along like a dying appendage.  These are just a few of the ways that fibromyalgia attacks your body and changes the person you are.

I know people might say, "but you don't have to let it change you" or "you're still you".  That's not the way of it though.  Pain absolutely changes you. 

Pain makes you tired.
Pain makes you less patient.
Pain steals joy.
Pain makes you sad.
Pain makes you full of rage at how unfair it is.
Pain makes you proud.
Pain takes away opportunities.
Pain makes you fight.
Pain is filled with guilt.
Pain makes you cry.. usually in the bathroom, with the door closed, hiding out from everyone while you stare in the mirror at a face that has been ravaged by a grimace of agony. 
Pain dulls the sparkle in your eyes.
Or maybe that's the pharmacy of drugs in your stomach that allow you to get out of bed at all.
Pain makes you forget what came before it.

I'm not the same woman that I was six years ago.   Adele's beautiful, powerful voice speaks of meeting and I wonder what I would say to myself across the line.  Maybe that this is the other side - the slow but steady progression.  The fight to stay the same and yes, giving in too.  I would say that there is good - the strangeness of becoming even stronger while learning how to be weak.  You are less judgmental and more empathetic. You discover that it's not always a bad thing to be selfish and how empowering the word 'no' is. 

You know how precious life without pain is and you jump into the good days with both feet, willing to play as hard as you can, for as long as you're allowed.  Even when it means paying for it, for days afterward.  I find myself doing that often now, despite how much it hurts.  If it's at all manageable, I do as much as I can and at times, frenetically, and then ask myself why.  Am I trying to cram everything in because I fear the day when I no longer can? 

I think I would tell her that I'm sorry for everything fibromyalgia has done to us but please understand that I have fought so hard and still do, every single day.  I'm not going quietly. 

Thursday, November 20, 2014

Family Feud Therapy

I'm in the waiting room and there are four women in here, including me. Two of them are around my age and one is elderly.  We're all well dressed, quiet, unwilling to make eye contact, and a bit uncomfortable.  We also all keep our gazes down.

It makes me wonder what they're here for.

Family Feud is on the TV and all of them are now talking a bit, commenting on it. I'm not though. Now I feel even more strange. At least there was a tentative kinship in silence.

I think group therapy, if there becomes one,  will be difficult.  But still I wonder what their stories are.. what struggle they need help with.

I'm babbling.. nervous I suppose. One of the women is from Atlanta, she's definitely chatty now that the Feud broke the ice. And as much as I get curious why they're here, I wish everyone would be quiet.  I'm afraid they're going to expect me to join in.


Those were texts messages from yesterday, sent to Tony while I waited to be called back to my mental health therapy session.  The clinic actually calls that department - Behavioral Health.  I don't like that term though, it makes me feel like a naughty child.

I wonder if pretty much everyone struggles with going to see a therapist.  I know I do.  The only way I can get my head into it (pun intended) is to think about mental health being just like physical health - if either or both are unwell, they need a doctor.

I've had three therapists in two years.  The first one was not a good fit, to say the least, and it nearly put me off ever going again.  Only the fact that I knew I needed help dealing with being sick made me try again.  I liked my second therapist, a female Psychologist, but she ended up leaving the practice a couple months ago.  So, here I am with the third therapist and she's someone I could see myself being friends with were circumstances different.

As we were walking through a maze of hallways to reach her office yesterday, she pointed out this little nook with a couple chairs, a small table of magazines and said to me, "You can wait in there the next time you come, if you like.  It's a little more secluded and quiet."

I guess after only one session with me, she was either the Jody-whisperer or she noticed that while the three women looked like long lost friends by this time, I was staring determinedly at my phone, trying to conjure up a mute button that would work on them.

Talking with strangers is difficult for me and in a setting such as that, all of us being there for a reason that is probably private and uncomfortable to begin with.. well, it's not much different than having your legs hiked up and feet in stirrups while Dr. Awkward checks over your lady-business.  Thus, I was truly grateful when the therapist offered me the peace of that closet sized waiting room.

Liking your therapist is a pretty big deal.  Just as we need our physical doctors to listen to our symptoms, to believe us even when those symptoms sound crazy, and to realize we know our bodies better than they do, so do we need our mental doctor to simply let us talk and validate the sadness and anger that comes with disease.

She asked me what I need from her and the sessions and I replied, "Just for you to listen.  Be the person that doesn't love me, the person that I don't feel the need to protect from how awful being sick is.  Let me be selfish in this room, let it be about what I'm going through because out there, I'm fiercely proud, I'm still trying to hide it the best I can and I put everyone else first."

Tuesday, November 4, 2014

Just 'Memes' Today

I love Pinterest.  It's like an online mall of everything in the world.. for free.  Perfection.

If you look off to your right, you'll see a Pinterest button that if clicked, will take you to my Fibromyalgia board.  It has funnies, knowledge, helpful tips, research, compassion and everything in between.  But every now and then, I want to bring that board here to my posts with some of my favorite memes.  Here are a few for the week: