By: Scherry Clarke
Reprinted from FM Online
As I look at myself in my daily activities, I can honestly understand how people might conclude that there really isn’t a thing wrong with me. Any given day, someone can pull into my driveway and find me bent over in the garden, grooming or riding one of the horses, weighing out an entire day’s worth of hay for two horses, shoveling and mucking out manure, tilling and raking my 60-foot training pen, or doing any number of activities that would make a bull elephant soreâmuch less a person with Fibromyalgia.
A few weeks ago I took a several-mile jaunt up to a lake in my favorite Canyon Preserve with a friend to inspect the safety of a riding trail that had been damaged after our torrential rains here in Southern California. After removing my boots and examining a quarter-sized blister on my heel (and listening to the annoying rattle of the rocks in my head chiding me for taking the hike without moleskin), I really had to take council with myself and ask:
“How do IÂ do it?”
Sadly, for “outsiders” looking into the one-way mirror of fibromyalgia, the reflections of those of us trapped inside appear perfectly fine. Comments such as: “Oh, you look like youâre having a great day!” or the ever popular, “You’ll have good days and bad days, but you do so well!” just kinda fly out of people’s mouths. How can we even begin to explain to others that there simply are no good days for most of usâonly degrees of bad?
What people can’t see is that for those of us with Fibromyalgia to participate in activities and make a brazen attempt at a normal life, we often have to give 300 percent or more, while “normal” people put out 10 or 20 percent for the same activity. Most ofÂ us spend years experimenting and tweaking various combinations of medical and holistic therapies in the desperate hope of taming the pain monster, quieting the anxiety that emerges from our whacked-out nervous systems, and trying any and everything to get a halfway decent night’s sleep. The struggle is endless and overwhelming.
After a lot of whining, moaning, and generally feeling sorry for myself, I finally realized that the first place to being managing my pain and taking back my life was right up in my own knotty little head. I also realized I was in for the fight of my life and most likely for the rest of my life. In order to be victorious, I had to really,Â really want to get better. It was the first and hardest step to take and nobody could do it for meânot my doctor or husband or friends or family or shrink (which I didn’t have but probably could have used!). I had to love my life and the lives of my family more than I hated fibromyalgia.
Initially, my mind was very weak and threw me curve balls, trying desperately to convince me that I had a right to complain and lie around and be sorry for myself because I was in so much pain. How could I stop myself from having these thoughts and acquiescing to what I knew was self-defeating thinking, which in turn brought about self-defeating behavior?
I decided to try meditation. There are all sorts of books on it, but being a cheapskate (I will spend $200 bucks on a bit for my horse but won’t shell out $3.50 for nail polish!), I was determined to go at it alone.
I began to train my mind to focus on one thought for a given period of time. At first when you try this, you find your mind flitting all over the place. Turn on a stopwatch, close your eyes, and try to focus on one single image (I used a giant pine tree) for as long as you can. The second your mind flits from that thought, hit the stop button on the watch. You will probably be surprised at how little time has elapsed. The goal is to keep working on it until you can keep your mind focused on your chosen image for at least five minutes. It seems impossible at first, but even if you never make the full five minutes, you will make progress.
As time goes on, you should be able to quickly cut off negative thoughts as they sneak up on you, and replace them with your image of choice, which ideally should be something calm and serene. Sometimes, I can almost smell the pine trees. Eventually I embellished my little “vision” to include myself as a spirit, soaring out over the trees on the mountain top where my late grandparents lived in Germany, and where I spent much time. I know it sounds cheesy, but hey…it works!
Learning to control and, to a certain degree, even eliminate the negative energy that results from pain, anger, and depression is, in my opinion, the first and possibly most important step toward self-preservation. I have found that after several years of this practice, I am somehow able to push the lower levels of pain (usually about a level 4 or maybe a 5) into the background of my mind. It still exists, but I can work around it without it affecting me too badly. If I’m still being bugged, I take medication. That works very well for me most days, in combination with the meditation. Sometimes weeks go by without me taking anything for pain.
Now that our ability to control our own minds would put a Buddhist monk to shame, we must concede that there will be days when no amount of meditation will completely control flare-ups that are so agonizing that we become practically frozen. It is during these very difficult days that we should not feel guilty about combining our meditation with adequate pain medication, massage, rest, and whatever else it takes to get through the rocky times.
If your pain is overwhelming, talk to your doctor and decide upon a treatment program that will afford you enough relief (when combined with your meditation) to start very slowly bringing your body back to life again. If you are depressed, anxious, or having trouble sleeping, there are dozens of very effective medications on the market you can discuss with your health care provider. You will probably have to adjust and experiment with many different combinations of medications and therapies before you finally start hitting the nail on the head, since what works for one may not work for another, and the doctor has no way of knowing which medication will work for which patient, other than a trial. After finding the right combination of medicines, IÂ can’t change a single one or make any substitutions without immediately experiencing trouble again with my sleep.
One hour before bedtime, I take my medicines and off I go into la la land. But it took me several years and several medications before I got to this point, so don’t ever give up. My doctor also gave me a letter recommending a therapy spa for my condition, and some of the cost was tax deductible as a medical expense! It took refinancing the house to dredge up the money required for the spa and the patio it was to sit on, but it was some of the best money ever spent since warm, moving water can feel exquisite to a pain-wracked body.
I stretch every day, and most of the time can still put my hands flat on the floor in front of me without bending my knees, which is pretty good for my chunky old self! If I don’t stay flexible, I will never be balanced and safe in the saddle, and since my horse is my passion, I have a very important motivator.
To take back your life, you need to achieve what everyone needs to achieve to live in some degree of harmony and happiness on this good Earthâand that is balance. Your medication must be balanced, your diet must be balancedÂ (with a few cookies thrown in once a week for purely emotional support), you must get a reasonably decent quality of sleep each night, and you must be able to achieve at least a certain degree of physical activity daily. Perhaps most importantly, your spirit must be set free from its prison of pain and doubt, and allowed to soar again, so you are no longer a wraith or a shadow of your former self. You must develop a deep, abiding anger against this usurper and channel that anger into something that you are absolutelyÂ passionateÂ about, whether it be horses or gardening or volunteer work or sports or anything.
Once you truly believe that you cannot and will not sit idly by the window, dying a little more each and every day while the seasons turn and the world rushes by outside, there is nothing that you will not be able to achieve. There will be no goal that you can’t reach to some degree, and no barrier that will hinder you when you combine the advances of modern medicine with the unimaginable and untapped powers of your mind and spirit, which are quietly and patiently waiting for you to once again set them free.