May 12th is Fibromyalgia Awareness Day! This year I plan to attend a walk in New York City to raise money and awareness of this disabling disorder. It is called the Caterpillar Walk and will be held this Saturday. My wonderful son will be accompanying me. I think he is most excited to be going into the the city. He has never been even though we have driven by or stopped on the outskirts numerous times. I am also excited (er… nervous) – (1) I have never driven in NYC before, (2) with my brain fog, I am worried I will get hopelessly lost, (3) I will forget where I parked, (4) what if my feet and legs are in too much pain? (5) what if I am too fatigued to drive home? The worries are endless…
Raising awareness for any illness is important. It helps when we are advocating to legislatures about allocating funds for research and treatment options. It helps when we are raising money for advocacy and research. It helps when trying to explain our symptoms to family and friends, and even strangers.
So, for those of you who are not familiar with fibromyalgia, here is the 30-second elevator speech version:
Fibromyalgia is a chronic pain disorder with a variety of symptoms, the main ones being: fatigue, sleep problems (including insomnia, sleep apnea, non-restorative sleep), cognitive dysfunction (also know as brain fog or fibro fog), stiffness, tenderness. Other symptoms that can occur are depression (because who wouldn’t be depressed sitting around all day in pain?), anxiety, migraines, acid reflux, irritable bowel syndrome, irritable bladder, pelvic pain, temporomandibular joint disorder. Doctors do not know what causes this condition but research has shown it effects the central nervous system, immune system, and the sympathetic/autonomic nervous systems.
In a nutshell, it sucks. As a Guns & Roses songs states, “What we have here is a failure to communicate.” It is like our bodies are out of sync and rebelling against us. This has a profound impact on our daily quality of life.
I have a challenge for all of you who do not have fibromyalgia. Place a clothespin on one of your fingers. Can you last ten minutes with it on? How about an hour? A day? That is only one of the symptoms people with fibromyalgia live with on a constant basis – only we never get to take the clothespin off.
Sleep can be such an elusive friend. We all need it to recharge our bodies and spirits. In fact, it is only during deep sleep that our bodies can repair the damage they have sustained during our waking hours. But what do we do when our friend becomes our worst frenemy? You know what I am talking about. Those restless nights when you would give ANYTHING for just a few hours of blessed, restorative sleep. Watching the clock all night is not a game we like to play. Tossing and turning, restless legs are not part of our exercise regimen. But some nights, that is exactly what it is. Some nights we have to simply grin and bear – stay calm and carry on.
Then there are the mornings. Personally, I have my best sleep between five and eleven o’clock in the morning. When everyone else is starting their morning routine of getting up, showering, going to work, I am achieving that perfectly refreshing level of sleep I craved all night. I have tried resetting my dysfunctional sleep clock, but it fights me tooth and nail every time. If I try to do anything in the morning that does not involve my bed, my body will rebel. And guess who pays the price? Me, of course.
Once I fall asleep, I am loathe to get up. Whether I am in bed getting my morning sleep or napping on the sofa early in the evening, I hate to wake up. There are numerous factors keeping me soporific. The first is that I am normally in the midst of dreamland when my alarm clock tries so desperately to wake me up. Dreams, for me, are an escape from my tedious life of chronic pain and endless treatments. I never have pain there; I am an active adult running around without a care for my health. I feel normal, like my old self when I am dreaming. Who has nightmares when their waking world is filled with pain – every day, day in and day out. If I could, I would stay asleep forever. My dreams allow me to take the much needed vacation from my life. As I float my way to the surface of consciousness, I am faced with the physical pain. Is it any wonder that I often choose to dive back into my dreams? The pain in my hands and feet are always there to greet me. They faithfully stand by me through thick and thin. Such are the frenemies that haunt my waking hours.