I have fibromyalgia. As near as I can tell, I have had it most of my life, since about high school. It was an occasional visitor through the years, mimicking arthritis or a headache or the general “blahs”. I would not have been diagnosed with it as fibro back then. But now that I have the actual, “doctor says it is so” diganosis, it has become my constant companion. And it’s not a very pleasant or polite companion. Sort of like having a drunk uncle or a demented grandparent that you are responsible for, who constantly embarasses you in front of your friends and coworkers…and yet you can’t send them away to live somewhere else.
Fibromyalgia is diagnosed through a list of symptoms and testing pressure points on your body. The list has 18 specific items and if you have 11 of them, you are deemed to have the disease. I have all 18. Well, okay, since my red snows have stopped, I no longer get menstrual cramps. So I have 17 out of 18. The most common sign is pain. Pain without apparent cause, pain that exists without a visible trigger such as an accident or walking into the edge of a piece of furniture.
Pain has been a lifelong burden for me. I spent time and money prior to my diagnosis trying to alleviate the pain without success. I thank the gods that my primary care physician believes in pain management and has given me three prescriptions for different types of pain relief. One of them is a narcotic and everyone is concerned that I will become addicted to them. I keep telling them that I am NOT addicted to the pill; I am addicted to no pain. Frankly, at this point in time, even this is not stopping the pain. It takes the edge off and keeps me from having screaming levels of pain, but there are still aches and twinges.
I don’t know if it is my age, the fact that we lived for a year in an apartment that had black mold (and I am highly allergic and very susceptible (like a canary in a coal mine, says my husband) which means it affects me badly), or just coincidence, but the fibro has not just flared, but reared its head up and has taken over my life. I am out of work more often than I am at work; I have almost no social life and in fact, haven’t gone out of the house for more than a meal or a doctor’s appointment in about a month.
I am angry with my fibro. I resent that it has robbed me of my normal routine and any meaningful activities. It irks me that just lifting my drinking glass (weight: 24 ounces of liquid and whatever the cup itself weighs) hurts my hands, wrists and arms. I despise that fact that I walk like a very old lady, shuffling and feeling pain in every step. I can’t crochet or knit more than a row or two before I have to rest due to pain. I can’t do the puzzles I enjoy because between the pain and all the pain pills (and the new fibro med that I am getting acclimated to), I am so fuzzy brained as to be…stupid. I cry at the least thing without any real cause for the tears.
I am not a good invalid. I do not lounge gracefully on my chaise. I do not ask for a refill of water demurely and with a sad but gentle smile. I do not bear the indignity of incapcitating illness (like that alliteration?) with anything approaching Hemingway’s “grace under pressure”. I am angry.
And yet…I realize that there is a deep and necessary lesson to be learned from this. I have endless time to meditate and to think. (Since I do Zen, where meditation is to clear the mind of all thought and exist only in the moment, meditation and thought are two different things.) Physical limitations open doors to spiritual and mental expansion. Even feeling fuzzy headed as far as logic and puzzle-solving still gives me the opportunity to think in a sort of free association, going down a river sort of way.
I can take the energy of my anger and channel it into an exploration of the mind and soul. “Be still and know that thou are god” is an attainable task for me, since I do a lot of sitting still. I can question my anger, dissect and analyze it so that I can let it go and move on to other things. I can open myself to the gift of other people’s generosity. I am blessed with friends who will take care of my chores because I cannot–and I am learning how to let go of being the one who does them. I have such a sense of responsibility, it’s very hard to sit still and let someone else do what I think I should be doing. It’s also nearly impossible to keep my mouth shut and let them do it their way, instead of bossing them and insisting on having it done MY way. (Side note: the search for clean kitchen items is a fun romp through the cupboards, looking for whatever it is I need.)
Having limited energy means really prioritizing tasks because there is no extra to waste on “squirrels”–our way of saying something that catches your attention like a squirrel gets a dog or cat’s attention…even if they can’t get outside to catch it–an unnecessary, unimportant task of any sort. You’d be surprised at what can be left alone and doesn’t need all the energy we usually pour into it. Limited energy is like limited funds…you spend it much more wisely than if you had endless amounts.
I am discovering that the fibromyalgia is actually a gift. It has given me time (lots of it!): time to think, time to look at my life and time to learn lessons I need that could not be absorbed any other way. The pain itself has sharpened my awareness of my body; it’s taught me how to identify and quantify the pain and to appreciate the relief from pain that my pills, the chiropractor and massage therapy give me. I am grateful for the diagnosis because now years of symptoms have a name and was not me just being lazy or malingering. The addition of a cane to my daily attire serves as a real test of other people’s courtesy and help–which comes often and from such a variety of types of people that my hope in the human race is refreshed. Having to ride through the stores in a handicap cart is an interesting study of people’s attitudes towards the handicapped. Fortunately, most people are pleasant and compassionate, offering help without having to be asked. And my lesson in that is accepting this kindness…having done nothing in particular to deserve it.
So far, I would say that I have learned this: that a debilitating, chronic disease can either destroy your soul or uplift it, depending on how you choose to deal with it. Being in constant pain makes it easy to be nasty, demanding, rude, and just plain not nice to be around. But you don’t have to give in to that. I’m not saying that you have to be some kind of saint, smiling through the pain…but it’s easier to deal with the pain when you’re not one–because people are more willing to help you when you are kind, which helps you feel better, so you can be more pleasant, so more help will be given…a cycle of kindness all around. Seems like a much better way to live than the cycle of pain, your nastiness and other’s avoidance of the nasty sick person.
And the gift of time is priceless…so use it wisely. I am trying to!