We will be publishing articles, poems and drawings from members and their families to give the community insight into their lives.
The Faces of Chronic Pain
I don’t use a cane. I don’t use a wheelchair. I look fit and vigorous. I can walk at a good pace. In fact, I’m the kind of person that other people stare at when I use a handicapped parking space. Yet, I am one of the faces of people who suffer chronic...and sometimes unbearable...pain. We are not always easy to spot; we don’t necessarily evoke sympathy when we go by. But let there be no mistake. We usually are fighting pain with each step that we take.
I didn’t fully understand the toll that chronic pain could take. Like so many people, I come from the so what if it hurts, get on with your life school. Even cancer hadn’t slowed me down too much. But suddenly, my pain...around the left side of my back and stomach and then shooting up my spine down my left arm...controlled my life. I would learn that my life would be ruled by post?herpetic neuralgia, which is permanent nerve damage caused by a shingles attack. If I stood for too long, walked for too long, changed sheets, worked in the kitchen, or walked too much...you know, all the little things that make life work...I would experience intense pain. Various treatments have helped, but I can never forget to take my medications and pare down my activities. Indeed, in one of life s many ironies, it was the chronic pain, not the cancer, that led to my retirement on disability in June of 1999. I was the ripe old age of 53.
Of all of the things chronic pain has robbed me of, I think the lack of self?confidence and the feelings of being unreliable are two of the biggest ones. I was a busy and productive professional; balancing meetings, trainings, report writing, and doing it all fairly well. But, when I finally called it quits (about six months after I should have), I was making mistakes, begging out of meetings, mismanaging funding, and generally not performing to MY satisfaction; much less anyone else s The part of my ego that was fed by being good at a job I loved was gone. I didn’t know how to define myself any more.
But with loss comes gain. I found a chronic pain support group, and incredibly, there I met people who KNEW what I was going through. Not just wanted to know, but who really, truly, got it. Some, like me, looked too fit to have chronic pain. A few others reminded me how lucky I was not to be in a brace or a scooter. But no matter what they looked like, they offered me validation. No, I was NOT a wimp because the pain forced me to limit my activities. I was not a whiner when I complained to my friends, family, and doctors that I simply just HURT. The pain was not in my mind or something that I should just get over. What a relief to me to learn that I was not alone, and that all of us in pain must deal with the un?pained world, and its expectations of how our lives should be.
From that group, I began to heal inside. Not the physical pain, but the psychic pain of feeling like I just didn’t belong anywhere. As I felt better about myself, I could begin to build a new way of life for this person I had become. Life is not what it was like a few years ago, but it is good again. Some days, I have more pain than others. Some days, I can accomplish what I hope to; other days I cannot. But I no longer feel incompetent. Instead, I feel good about how I am managing chronic pain; a condition that can be as mysterious as it is invisible, and can be even more debilitating than a myriad of well?defined and understandable maladies.
Feel Left Out?
by Mayan Herman, Age 10
Many children have mothers that cannot do anything with them because of the pain. Then children start feeling left out. When your child is little, like three through six, your child will not understand what chronic pain is and why you are being so mean. That is because your pain is so terrible you let all your mean feelings on family members or other people. Your child can start saying the usual words like, “I hate you” or “You are the meanest mommy or daddy in the world”. If your child starts to say it again, they start to get that habit. You better talk to them before they say that mean sentence again. Your child does not know how terrible and horrible your pain is. It is good if a child asks many questions. It is important because your child can understand how you are feeling at usual times. When it is the time when your child is getting older, it is harder for the mom or dad. Children want to go out with friends and the mom or dad says no! The child starts to say their usual habits when they were little. Soon the child bursts out with tears. “You never do anything with me” or “You miss all of my field trips in school”. That is what happens. Parents cannot volunteer in workshops, field trips and parts in school!
When your child is much older, they understand the facts about pain, but not the tips. Let your child write down some tips. A good tip for thinking of ways to get ideas is writing notes. Think of relaxing techniques. Think of rainbows and beautiful ideas to keep you calm. There are times when you have to let out a cry just to make you feel better. Nevertheless, holding it in makes it worse. Make sure you check over their work when they are done so they understand their mistakes. When your child finishes the tips about pain, you and your child should read a chronic pain book together. They will understand (if they are old enough). If you go to a support group, take your child with you. It is very important that your child understands what chronic pain is. It is very important.