Living Life with Hope
I wanted to have this article done a week ago. This is life with fibromyalgia: always running late because of a flare up in pain that puts you back a day, a week, even a month. This week I had a wedding to do, which was supposed to be a fun thing, but when you are standing in front of the bride and groom in pain from your legs to your eyebrows--well, it’s not much fun.
I was diagnosed with fibromyalgia almost a year ago, but have had symptoms of this coming on for about five years. It runs in my family, I am almost certain of it. When I look back and see the physical and emotional stressors that my grandparents had—and great-grandparents, for that matter—I can see why two grandfathers became alcoholics to handle the constant pain.
It’s not a simple pain either, as if you had stubbed your toe or bumped your head. It's pain that comes and goes without reason or without a way to predict when it will happen. Some days I exercise and the next day I feel nothing but fantastic amounts of energy and the emotional lift that a good swim or a ride on the mountain bike might give. But, like last week, working in the yard, running around with the kiddos (four of them), playing "Simon Says" and "Red Light, Green Light," and I wake up on Friday feeling as though I have been beat up in the night with a bar of soap in a pillow case.
I am a stay-at-home father 85 percent of the time. The part-time job I carry is as a pastor of a small rural church here in Weldon Valley in Colorado. Being a stay-at-home person has definitely been a blessing, as when the pain gets bad, I am in a place that is safe and where I can jump into the whirl-pool bath I put in my bathroom to get loosened up. I have a laptop computer to write sermons on and do lots of instant messaging and emails to my congregants—it is a good way to not only modernize this country church, but also has opened up a lot of good dialogue with people afraid to talk to me face-to-face about their problems.
Problems are a daily thing when it comes to handling the pain in my joints and muscles. The problems of making sure my painkiller pills are on track and I haven't used too many in one day, the problems of emotional turmoil as I am trying to understand why this happened to me (did I cause this somehow?), the problems of trying to make these issues understandable for those who have unrealistic expectations of me even as I deal with my chronic illness (that is the biggest problem I face outside my home).
For the most part, I am functional except for the nagging stiffness and my limbs falling asleep. The bigger pain I deal with during my waking hours is the pain of the emotional turmoil. why did this happen to me when I was doing "the Lord’s will?" Too many times I think I have spiritualized my sickness, thinking that just because I was a pastor somehow I was immune to a chronic illness. I would say to myself, "I have a mission here, starting a church for Pete's sake. Why would this happen to me and take away some of my ability to lead and work?" Woe, woe, woe is me. All this is just whining, however, and it doesn't do any good. I am not any more or less lucky than anyone else. The rain falls on the good and the bad. Truth to be told, once I became ill the people of my church took more than half my responsibilities upon themselves and have made the church even better. Time to look at the glass as half full, not half empty, when you see such things happen in your life.
Not everyone sees it that way though. For some people, my illness is a fake. Since I cannot explain it in detail, they act as though it is a cop-out for me to eventually claim disability. Those people I stay away from if possible; they are toxic because they think about themselves and their own needs first, without attempting to understand anyone else's position or problems. If I were on my deathbed, there's at least one or two people I know who would be saying that was fake too. I inform them the best I can about what is going on, for as much as they need to know, but for those with expectations that are too high for me—distancing myself is about the only thing I can do right now. Too much stress leads to fibromyalgia flare-ups for me—panicky feelings lead right into pain running through my body and a terrible feeling in the back of my throat and arms. I don't need that.
So what are my successes? I still work at my jobs. My kids are well taken care of, although I leave the house a mess sometimes. There are those days when bed rest is needed. I garden for peace and pleasure (and a little profit when I sell small trees I raise). There’s nothing like watching a ginkgo biloba leaf out and then seeing the eyes of the buyers when I give that tree to them.
I also love my yoga. I have a 28-day regimen I stick to when I can. I wake up sometimes at night, restless, and do yoga to relax my stiffness and soreness. I try never to take pain killers at night, therefore yoga is my salvation.
I can also take care of my children without much concern over my abilities. They know I have this disorder, and they take great delight in helping me out around the house and also just with lots of hugs. With four of them (ages 8, 7, 4, and 2), you can imagine how busy our home is. Their energy and imaginations keep me going as I watch them play and join them sometimes too! Forgetting you are 39 years old and bringing out the child in you is one of the most relaxing endeavors you can accomplish with this disease. It makes you say to yourself, "This can be dealt with. You will not conquer my spirit."
And, of course, there is the spiritual element. All this has brought me closer to my Maker instead of farther away. I have learned it's okay to be angry with the Creator, to question why things happen, to make myself open and able to receive those answers I don't wish to hear. That is not easy, but without my pain and this sometimes seemingly intolerable illness, I would not be where I am spiritually today. The Apostle Paul, with his "thorn in his side," spoke in the New Testament about how he was kept humble through this. I have my own thorn; therefore I am somehow in the same class as Paul. I should be so honored to be in such good company.
As a man, I want to control what happens to me. I am the bread-winner and builder, the soldier and peacemaker, the embodiment of machismo and strength—or so I thought at one time. Now I realize that through what I face and suffer, I am able to talk to others with the same or similar problems and even as iron sharpens iron—so am I able to learn how to deal with what I suffer, and also how to help those who are just beginning to go down this path. Fibromyalgia is a pain, literally, but it is not the end by any means. Right now I hear the birds outside my window—and the room is awfully quiet. The birds remind me it's time to get to work and change the water on the lawn, and also find out what the 2- and 4-year-olds are doing—silence usually means trouble!
For those of you who are suffering as I once did, and as I do once in a while, don't be silent—silence means trouble! Speak up and speak out. Find someone to talk to—even me—so that your journey is full of life and hope and not so much pain and loneliness.
