Sunday, August 31, 2014

Fibromyalgia and The Wonderful Wizard of Oz

Nobody know why! No one, no how!
Fibromyalgia is characterized by widespread pain & weakness, tender points above and below the waist, fatigue, anxiety & depression, sleep problems, joint pain & stiffness, and many other possible symptoms. There is no definitive cause of fibro, although the central nervous system might be a major culprit. Exercise, diet, and lots of medication are the most common ways to manage this disease, but there is no cure. I was diagnosed with fibromyalgia about 10 years ago. Coupled with widespread arthritis, two pregnancies, and 50 pounds later, and it really takes it toll on me most days. It is difficult to explain fibromyalgia to people unfamiliar with chronic pain and its related issues. I thought that using popular characters from one of my favorite films, The Wizard of Oz, might help illustrate this disease.  

The Tin Man
Do you remember the scene where the Tin Man is introduced and he has rusted so badly that he can't move? That is what my back feels like most days. Bending can be very painful and my walking is greatly affected. My wrists, shoulders, and hips will pop and crack, and hurt to move. Instead of an oil can (I wish!), ice is usually the best way to relieve the shooting pain and inflammation. 
Sometimes I will set off on an adventure, confident that I have enough energy to survive, and then it 'rains' and I am rusted together again. My outings with the children generally consist of places near home so that we can come back quickly if needed. We will take grander adventures (zoo, renaissance festival) about once a month, but the toll it takes on my body can be excruciating. We will plan a trip to the zoo on a Saturday and be fully prepared that I will sleep as much as I can on Sunday and the kids get a movie marathon and enough chocolate to keep them quiet.

The Scarecrow
Just as often as I feel stiff and sore, I feel like I have no strength at all. Some days just rolling over in bed takes more strength and control than I have. I feel like a floppy rag doll with no muscle tone. The catch-22 with fibro is that exercise can help to control the symptoms, but finding the energy to exercise (and then the extra time to recover afterwards) is nearly impossible when you have a real life. Most of my day is about surviving and meeting the needs of my family---the cooking, getting the kids to school, cleaning, shopping, etc. doesn't leave much energy-filled time in my day. 
I also experience something called 'brain-fog' or 'fibro-fog'. It really does feel like your head is stuffed with straw when cognitive difficulties such as confusion, memory lapses, difficulty concentrating, etc. sneak into your daily life. I have always considered myself to be a well-read and well-spoken person, but more often than not it takes me several tries to think of a basic word or definition. Sometimes I worry about early-onset Alzheimer's. I have trouble focusing and lose things constantly. I combat these symptoms by keeping a detailed schedule book.  I need to start a journal detailing where I put things so that I can find them again later when I am frantically searching and tearing the house apart for that one piece of paper I put in a safe place.
The Cowardly Lion 
Who feels fat, sweaty, and anxious?! Me! Oh, and maybe the cowardly lion. Anxiety is a tough part of this disease. Does being anxious all of the time cause your body to react viciously, or are you anxious and/or depressed because you hurt? Regardless of the root cause, anxiety is tough to live with. I have found great relief in prescription anxiety meds, but they are not a complete cure for the constant stream of worry and the sadness that comes with having your life altered by disease. 
Some of the meds that you take to combat the fibro pain will just make your life worse in the long run. Prednisone is a steroidal anti-inflammatory that is safe during pregnancy and nursing, so I was on a low does of it for about 4 years. Higher doses can be used to stop flares and keep you out of the emergency room. Prednisone will make you eat more, gain weight, make you jittery, sweaty & flushed, and leave you unable to fall asleep. Another popular med is Lyrica, which is an anti-convulsant. While it is helpful in controlling Restless Leg Syndrome, it can also help you pack on the pounds. Instead of making you jittery, this drug leaves you lethargic and exhausted. I have just come off of this med (which is a challenge in its own right!) and am hoping that I can drop some weight. The down side, of course, is that I am more stiff than I was while taking it.
I have been trying to test and change my medications recently, which is stressful. You can be on a wonderful drug that makes your life better for awhile, and then it slowly stops working. Unless you can come off of the meds and find out what your baseline is, then you don't know how well it is working. I take more medications than most people twice my age, and I seriously worry about the long-term effects that they will have. Am I going to live to see 60, or will my kidneys and liver be too destroyed to make it that long? I do regular blood tests to stay on top of any changes, but it is little consolation when you are taking a low-dose chemo pill and you don't have cancer.

Like Dorothy, I have hope that there is something better out there.  Somewhere, over the rainbow, my body is fine. If meds work over the rainbow, why tell me why won't mine? 
One of my favorite scenes in The Wizard of Oz is the one in which Dorothy falls into a deep sleep in the poppies. Her inability to wake up and keep moving forward, even though she desperately wants to, is the best characterization of fatigue I have ever seen. While I sleep a lot, I try to be awake during the day when the kids are home. When a wave of fatigue hits, however, I have no choice but to lay down and sleep it off. You can feel like you have no control over your body...I want to be able to get up and move around, but my muscles will not cooperate. It reminds me of being on Ketamine during my emergency c-section with my youngest kiddo; being unsure as to what was going on, with no ability to participate long enough to figure it out. 
Also, like Dorothy, being diagnosed with a chronic illness thrusts you into a world you didn't even know existed. Like the farmhouse spinning out of control, you feel lost and confused. Everything is new, from the range of specialists that try to figure out what is wrong with you to the array of meds and treatments that you try, and the whole time you are learning a new language that will come to define who you are. I often think of my activity in terms of spoons, which is a term that most people aren't familiar with. However, when you do meet someone who speaks the same chronic illness language, people who have seen both sides of the coin, like Dorothy and Professor Marvel, it makes you feel a little less crazy.

The Wicked Witch of the West
This is probably what my children would call me most days! I can be a real bitch when I am hurting, but I don't want to be. I try to be a kind person in my daily life, and when I am cranky and exhausted it makes me feel even worse. I think that the Witch would have been much happier if she'd had someone to commiserate with, although I guess that the house falling on her sister took that away from her. I would be lost without the few other chronic illness moms that I have found who truly understand what it is like trying to be full time mom on an empty tank of gas. My husband battles his own chronic illness problems, and our shared experience helps when one, or both, of us is hurting. Today, for example, we have had nap tag, where one of us stays awake to watch the children while the other one sleeps. Oh, the exciting life of broken parents!
Like the Wicked Witch of the West, I feel like something has been taken from me and I want it back. I want magical slippers to click together three times and send me back to being pain- and exhaustion-free. I can empathize with the Witch, as it is incredibly frustrating seeing someone else have the thing that you want most in the world. I can get so jealous of other moms who aren't in pain, who don't have to ration their spoons to get through the day. I am on a PTO committee at my daughter's school, and had to get some information to another mom for a project. I was exhausted this weekend and slept most of Saturday, so I didn't get back to the mom until today. Her response when I apologized and said that I had been sleeping off a flare? I wish that I could have slept in, but I had things to do bright and early. Really, no kidding?! So did I, but the problem is that real life doesn't always win. 

The Wizard 

Pay no attention to the man behind the curtain! This is one of the best line of the movie. As a chronic pain sufferer, you really do have a split personality. The happy, smiling, confident side (the all powerful Wizard!) is the one that you try to show to people when you are out and about, or when you are with acquaintances or new friends. The other side, the one that grimaces and whines, and is unsure of what to do or how to do it (Professor Marvel), the one who *honestly* answers 'How are you doing today?', is reserved for close family and friends. You will feel a lot of judgement come from other people, even those who you think should understand, about every aspect of your life. Simple, thoughtless statements like, 'Just exercise/sleep/relax more!', 'You're too young for that', or 'Fibromyalgia [or insert chronic illness here] isn't a real thing/You're just lazy', and 'Good thing you get to stay home!' teach you that invisible illness is not taken seriously enough in our culture. If I were in a wheelchair, I'm sure that people would be much more understanding and compassionate towards me. I will tell people about my issues, but usually only when a similar subject is broached by them. I have seen people's attitudes towards me change with the simple explanation about my pain. Opening yourself up to others is scary, though; you never know what the reaction is going to be, or how it might effect your life. Although I am not teaching, I would like to go back to it when both kids are in elementary school. How much information do I share with your friends and former co-workers, and how might it effect my odds of getting my job back? In that regard social media is both a blessing and a curse; your whole life is searchable by others, but you can find people who are in the same position in life. Thank goodness for closed/private Facebook groups and the support that they provide when you are at your lowest points.

Do you have chronic illness? Which character(s) do you relate to the most? Are there other ways that you use to explain your issues to other people?