Wednesday, October 27, 2010

Chronic Fatigue Syndrome

Many of us fibromites also suffer from other debilitating problems: migraines, irritable bowel and bladder syndrome, joint swelling, dry mouth, restless leg syndrome, dizziness, PMS, depression, panic attacks, scoliosis… the list goes on and on. My mom and I both suffer from other diseases besides FM, but in this entry I want to focus on Chronic Fatigue Syndrome and the misunderstandings that go with it. I don’t claim to be an expert, but this has been my experience.

CFS is another one of those invisible diseases that is diagnosed by examining the symptoms and ruling out any other possible causes. The problem is, the array of symptoms can be caused by many other things, such as sleep apnea, and all of them are difficult to treat. The irony of this illness, especially put together with FM, is overwhelming: chronic pain interferes with sleep patterns, and a lack of sleep lowers the body’s pain threshold. Weight gain, a side effect of many fibromyalgia medications, can worsen this cycle. So can depression and anxiety. Restless leg syndrome can also keep you awake all night, and, of course, there’s just plain insomnia to prevent you from sleeping no matter how exhausted you may be.

It’s not easy being a teen (gotta love those puns) with this disease. “Getting tired” is a common complaint in high school; teenagers’ internal clocks are set to stay up until 3 AM, while the real-world clocks are set to wake up at 6. Chronic Fatigue is not quite the same thing, though. I often go to bed at eight o’clock, long before most of my friends are even home, just so I can manage to get up the next morning. The exhaustion is debilitating enough that it keeps me from going to school. Parties and get-togethers take a whole day of planning, and I have to make up excuses to leave early or avoid sleeping over because it’s too hard to be away from my bed that long.

The cognitive impairment is like fibro fog times ten. When I have fibro fog, I stumble over my words, say things backwards, forget where we parked or what my phone number is. When I’m suffering from “fatigue,” I can’t speak at all. I see your lips moving, but I have absolutely no idea what you are saying – and even if I did I couldn’t answer you. People often mistake my blank stare for apathy or even anger, but it’s nothing like that! I want to know what you have to say, but I just can’t understand you. Sometimes, when it’s really bad, I can’t even hear you. And when I start crying it isn’t because of anything you did or didn’t do, it is because I’m frustrated. I’m frustrated at myself and my body because I care about you, I care what you’re telling me and I want to understand, and yet it seems like you’re speaking some totally alien language. Every time I start to grasp the meaning of the words they slip away.

I have heard it said that people suffering from this “fatigue” aren’t capable of completing a thought, but that isn’t true in my case. In fact, I can’t stop thinking; just because I’m unable to communicate any of those thought doesn’t mean they’re not there. I can write entire stories in my head, and I will even write music or practice my scales, picturing how to play a song on the piano, sometimes pretending to sing or fly. It’s almost like “zoning out,” but for hours at a time – my own built in coping mechanism.

There are many people who have a hard time understanding this disease; as I write this, I think of my friends. They know I have fibro and CFS, but it’s hard for them to comprehend what that means. They don’t understand why I never want to sleep over, or that when I joke about shaking because of the Pepsi I had with lunch, what I really mean is that I need to go sit down before I pass out. They don’t understand that it takes a while for me to react to what they say because I’m still processing the words, not because I’m faking the emotion. They are loving and supportive, and it’s not their fault they don’t get it. “Pain everywhere” is pretty self explanatory. “Always tired” is a little more misleading.

For more information,

is a wonderful article on what it really means to have CFS. It’s very useful both for those with and without the disease, and the first time reading it was when I finally realized that not only am I not crazy, I’m not alone, either.

Thursday, October 14, 2010

The Copycat

     I never tried to get out of gym by saying I was sick.  If I had, I would hope to be as creative as a girl who said she had an Fibromyalgic knee the doctor found on an x-ray.  She must not know that x-rays do not pick up Fibromyalgia and it doesn't affect one location, but I love her creativity. 
     The ads on t.v. for Fibromyalgia are both a blessing and a curse.  Until the ads began, no one had heard of my disease.  Now when people discover I have it, they have a reference to start talking to me.  The ads also give a voice for an invisible disease, which is good since brain fog, pain, and fatigue, don't make us very good public speakers.  The ads also help drive companies to research and develop new medications that help make our lives a bit better.
     Unfortunately, these ads are also a curse for us.  All of the women on the ads are older.  I am not an older woman and they don't even begin to resemble my teenage daughter or the men I know that suffer from this disease.  The women on the ads talk about fatigue, but only in regards to the hobbies they can't do - such as painting or walking through Paris.  We barely manage to do our day to day tasks and our pain curls us up moaning on the floor.  The ads also convince people they know about the disease because they watched a thirty-second advertisement.  This leads to misunderstandings about what the disease really is and how it affects us each day - such as the copycat girl avoiding gym.
     I do love the fact that we have gained enough prominence to be the disease of choice for a girl trying to get out of gym.  It seems Fibromites have finally arrived!  

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.