My Daughter

     I have a beautiful daughter.  She has a smile that lights up the room and green eyes that remind me of the ocean.  Mandy is even more beautiful inside.  She radiates love and goodness to everyone around her, so you feel happy just sitting near her.  She is a warrior who fights all inequities and wrongs she finds in the world.  She is gifted and her mind awes me with the ability to see in ways I can't even imagine.
     My daughter also suffers from juvenile Fibromyalgia.  This disease struck fast and hard.  She fights to do things that other people do with no thought at all.  They can get up from a chair to go to their next class.  Often, Mandy can't because her legs have stopped working.  While other kids are dancing, playing, or doing sports, Mandy's hands have frozen up and she can't get them to write anymore so she can do her homework. 
     Mandy was going to school online, but wanted to go back to a regular school because she missed her friends. She is so loving and sweet, she makes friends easily.  However, as soon as they ask her to come over and play or go to a party or go out on a group date, she is an outsider.  She can't count on her body to do what she needs it to do and is afraid of it happening to her in a strange place.  She uses all of her energy trying to go to school each day and has nothing left once she gets home.  She can't make plans with her friends because she never knows how she will feel that day.  This is hard for a fifteen-year-old to deal with.     
    



  

Invisible Disease

     It is amazing how much of our identity comes from what we accomplish and what we "do," not who we "are."  The first thing people ask when we meet is, "What do you do?"  The perception is that our job is who we are.  This is very frustrating for people who are out of work or on disability.  It makes us feel like our identity has been lost.  We are no longer doers, even though we still have value as people.
     Fibromyalgia and chronic fatigue are invisible diseases.  You can't tell from looking at us that we are sick.  When we look fine, people tend to think we must be fine, even when we are not.  This leads to the idea that we are lazy, even though many studies show that our drive to perform and "do" may have contributed to our disease.  Some people, including doctors, look at our healthy appearance and call us liars.  I would not have spent thousands of dollars searching for an end to this pain if I was a liar.  I wouldn't have contemplated suicide as a way to stop the agony because I wanted you to believe I was telling the truth.
     Many of us are forced to drop out of school or go on disability because of the pain and fatigue.  This is heartbreaking because we feel like failures.  We are no longer doers, so we are nothing in your eyes.  We have failed you and ourselves.  We mourn the loss of our identity.  Strong emotions cause physical pain for us and this makes life even more unbearable for us and for you.  Statistically, 75% of people with chronic illnesses get divorced.  We also have a higher rate of suicide.  Why would we lie to get this kind of attention? 
     Many, like me, are able to work long hours at their jobs.  However, that is all we are able to do.  As the week progresses, I find myself getting weaker and the brain fog closing in.  By Thursday and Friday, I am lost in a fog of pain and fatigue.  It feels like I am asleep and have no idea what is going on around me.  I crash every weekend.  I crawl up in bed and sleep for hours on end.  I wake long enough to eat or do the few things I have to do and then crawl back in bed.  This is the only way I can manage to keep working each week.  I have to give up everything I enjoy, including socializing with family and friends because I don't know if that will be what makes me crash for three days.  I may not look sick, but this isn't the way I would choose to spend my life.
     Invisible diseases are no less real than visible ones and who we are is as important as what we do. 

I Feel

I drop out of school and I feel worthless.
I can’t remember my own address and I feel stupid.
I don’t want to leave my house and I feel imprisoned.
I’m too tired to do my hair and I feel ugly.
I hide in my dream world and I feel like a coward.
People tell me I’m not sick and I feel like a liar.
I can’t hold my pencil and I feel betrayed by my body.
I can’t walk up the stairs and I feel helpless.
I work so hard and I still feel lazy.
I wonder if things will get better and I feel afraid.

Common Enemy

Everybody knows somebody,

and somebody’s always got advice:

foods to eat,

drugs to take,

lifestyle changes we need to make.

Well, I’m doing all I should be,

I’m doing everything right,

so where’s that

m
i
r
a
c
l
e

ǝ
ɹ
n
ɔ

you promised me?

Pretty soon frustration takes over

and I

walk away;

it’s easier to medicate myself anyway.

So I do, and then there’s poetry

and chocolate and sunsets and sleeping in,

blaring music through the headphones

loud enough to make me forget

everything for a little while.

I hide back here behind my coping skills

and mild rebellion,

watching as my friends fall apart

in the same way I am,

watching as we all

turn

away

in different directions

from our only common enemy.

Pepsi and Trazodone

I survive on Pepsi and Trazodone,

and perseverance that tells me I can do anything

even when my body says I can’t.

I have legs that can still walk, and

hands that have both learned to write

because failure isn’t an option.

And we don’t complain –

we’ll never complain.

So I just put on a sweater to hide the fact

that I’m still freezing in August,

and a hat to hide the hair

that falls out sometimes on those days

when I forget to breathe.

Empathy Pain

     Mandy and I have been empathetic all of our lives.  As a baby, Mandy would be sleeping until a commercial came on with a crying baby.  She would wake up and cry her "pain" cry.  When the commercial ended, she would stop crying and fall back to sleep.  She never outgrew her empathetic connections.
    
     We feel the same connections for fictional characters.  When a character in a movie can't breathe, I have an asthma attack and have to leave the room.  When someone is hit in the head, I get a migraine.  A heartbreak?  Chest pain.    I have anxiety attacks when I leave book characters "stuck" in a suspenseful scene by closing the book.  I have to keep reading until they get to a "safe" spot to rest.  Mandy can't read suspenseful books because she suffers along with the characters.

     We feel pain for people we love, even when they aren't with us.  My sister-in-law needs surgery for enlarged cysts.  All week I have had random moments doubled over in pain in the same area.  When I check up on her, she says her pain was bad that day.  Mandy felt horrible all week and couldn't figure out why.  She found out her cousin had been vey sick with the same symptoms.  Once the antibiotics started working for her cousin, Mandy's pain went away.

     We feel each other's pain constantly even when we aren't aware of it.  Later when we see each other and talk about our days, one of us will mention a pain and the other will have had that same pain.  I will mention that I had a strange pain in my neck and shoulder and she will laugh and say she pulled a muscle playing on the trampoline.  She will mention a pain in her back and say, "I don't know why it hurts.  I didn't fall or anything."  I will say, "No, but I fell at work today."  It has become so common we joke about it.  "Mandy, I have a pain in my jaw.  Do you know why?"

     We always thought we were unique that way and shared a quirky ability.  Tonight some of my fibro friends were talking about having the same abilities.  We were all shocked that the others had the same experiences.  However, my non-Fibro friends give me strange looks when I try to explain it to them. 

     I have no idea what this means and can't find any research on it.  It may be another strange symptom that Fibromites have and doctors will say it has nothing to do with Fibromyalgia.  It may lead to new understandings about the disease.  It may be Karma.  For now, I am sending out love and healing thoughts to the universe knowing that I will share them with you.    
    

It IS all in our heads!

     We have been called hypochondriacs, overly sensitive, in need of a hobby, and attention seekers. "The pain is in your head." Little did they know how right they were.

     In the August issue of Arthritis & Rheumatism there is a study showing people with Fibromyalgia have more connections in parts of the brain that feel pain. The study used a MRI to see the brains of 36 women. 18 had Fibromyalgia and 18 did not.  Click the title of this post to see more information on the study.

     It will take time and more studies to truly understand the extent these connections have on Fibromyalgia. It may lead to a cure, a new way of treating the disease, or a way to diagnose it. For now the reseach shows it IS all in our heads and we can live with that.