Meandering journey to the hope of eventual health
Words have power. I am smart. I know this because every adult around me said so when I was small. Good thing they did not call me dumb! When one is small, one understands that words have power. Truth is inherent in words- children do not know that adults can lie, or they do not want to believe this to be possible. If you cannot trust the ones who are your guardians with words, how can you trust that they'll meet your needs?
Words have power. If you give something a name, you can tell someone about it. If you give an idea a name, it becomes a Truth. Some ideas are Not True, but they are named, and so we must give them consideration. If you give a series of symptoms a name, you give credence to the possibility that they are interconnected.
Words have power. There are words of description, and there are words of moral judgment. I give you a reason. You call it an excuse.
The more words you know, the better you are able to think. The more sophisticated your thought patterns, the better you are able to self-examine. The more you self-examine, the clearer your life becomes in retrospect.
As a child, I was gifted, creative, friendly, conscientious, independent, curious, and adventurous. I was a stickler for the rules, I lied to keep out of trouble, but was honest about finding coins on the playground. I was forgetful, easily frustrated, easily distracted, dreamy, guilt-stricken, responsible, irate about being blamed for things because I was supposed to be responsible, a dawdler, and a procrastinator. I was a perfectionist, I couldn't keep track of time, lonely, nobody's best friend, everybody's friend, but mean to the outcasts when it was expected of me. I was a people pleaser. I started many projects, but finished few. I started many stories, but finished few. I was easily sidetracked. My room was never neat, and I was generally disorganized. I often lost things. I tripped over my own feet.
I was called lazy, forgetful, procrastinator. Disorganized, irresponsible, messy and clumsy. My reasons for failing to live up to the expectations of the adults in my life were disregarded and labeled excuses.
Life didn't get any easier as I grew up. The structure of home, school, and eventually, the military kept me on track. I made major mistakes that took my life on different trajectories than I may have planned, but things always seemed to turn out. Thank goodness I am adaptable.
When I left the military to raise my children, life started to fall apart. I began to struggle with housework and finances and finding time for myself. When I only had one child to focus on, things were in relative balance. But when my son was born, everything went downhill. My life became one of oughts and shoulds, and everything turned into an obligation. Taking care of the kids? Obligation. Dealing with my husband? Obligation. Talking to people on the phone? Obligation. Keeping the house clean? Obligation. Cooking, which I had previously taken great pleasure from? Obligation. No wonder my life quickly became devoid of joy. Every day was a new day, and not in a positive way. I was reinventing the wheel on a daily basis, and struggling to survive. My stress levels were immense and my bouts of depression grew more frequent. I couldn't ask for help. I couldn't obligate other people. It was Hell.
I don't know how or when I escaped, but it felt like I was alive again. I could think more clearly, and laugh more easily. And I began to get help. Physical pain is a big part of this story, so I'll stop for a moment and go back to my childhood.
I loved to run around and play. But in elementary school, I began to have asthma attacks with some frequency, which hadn't been a problem since we moved from the desert. My feet hurt when I ran. I had insomnia. And I suffered from the occasional migraine. These problems didn't clear up as I got older, except for the asthma. Yet breathing was still difficult while running. Physical pain was just something I had to deal with, because PE teachers didn't cut much slack. I loved to dance and do gymnastics and climb ropes and play on the monkey bars. I generally did quite well on the Presidential Fitness Exams, except for the running. Anything that required a lot of running and coordination was a bane to my existence, which I don't think my parents truly understood. When I declared that I hated sports, that was why. I hated PE, but joined Colorguard and the dance team my senior year and LOVED them. My feet still gave me problems, so I had surgery to remove my bunions my freshman year of college. While I recovered, I felt a change in my surroundings was in order. It was either City Year or the Air Force, and the Air Force won.
At the time, the Air Force did a stationary bike fitness test, so I thought it wouldn't be too hard on my body. Of course, around the time I went to basic training, that changed. I was required to run two miles, and later, one and a half for my fitness test. Running was the same agony it had been since elementary school. My feet worsened. I developed back and neck pain. I ended up being on profile for the majority of my career. Yet I was generally treated like a malingerer or hypochondriac. Even when doctors did believe me, they generally told me to take ibuprofen and walk instead of run for awhile. I was sent to physical therapy a number of times. I even saw a chiropractor. My migraines and insomnia still troubled me, but the former seemed hormonal and the latter, my own fault. The back pain finally reached the point that a doctor asked if I'd ever considered a breast reduction. I was so relieved to hear that it was possible at my age (21)! I ended up having the surgery, and my pain diminished for a while. Then again, I wasn't doing much in the way of strenuous activity while I healed. By the time I reached my next duty station, the pain came back with a bang. And so it went on.
After I had my daughter and was no longer subjected to exercise requirements, I still had a lot of pain. I started to ask my doctor why I had so much pain. Why was I getting bruises with no obvious causes? Why was I always tired? Why did I have such frequent headaches? Why did my joints hurt at times? We screened out rheumatoid arthritis, but the doctor was as befuddled as I was. Later on, I learned about fibromyalgia, and thought I might have it. But my pain was manageable, and the doctors only wanted to hear one complaint at a time. I realized that my stress and my pain were related, and that I wasn't very responsive to pain medications. Physical therapy only helped so much, and once I had a child to worry about, the stress of trying to find childcare negated any help the therapy did provide. I looked for new solutions, and found one I thought might help- biofeedback. It is a mind/body technique that teaches one how to have more control over ones physiology. One of my main problems was that I held all my stress in my upper body and no amount of trying could make me physically relax. After some on again, off again attempts, I was able to get a referral to the clinic that dealt with biofeedback.
Unfortunately, the psychologist didn't know much about the system- in fact, his team was just starting to learn how to use it. My sessions were mainly talk therapy, which was helpful in some ways. However, when I was given homework to record my sleep habits in detail and keep a pain log, I was only able to keep it up for a couple of days. Then I would fail, and feel guilty about it, and be so ashamed that I didn't want to attend my sessions. I even canceled a couple of times. I tried to explain how stressful those requirements were for me, but the psychologist just didn't understand. When his rotation ended and I was assigned a new doctor, I quit going. It was too much. Yet the stress and depression were getting worse again, and I knew I needed help. Eventually, I found a therapist who specialized in stress management. She was also well versed in mindfulness meditation and hypnotherapy, and such a good listener. I knew using mindfulness techniques would help me, but though my desire was great, I could not meditate on a daily basis. I kept running into the same wall that was keeping me from doing the other things I wanted to in life. Our sessions were interrupted around the time that I decided to start a business teaching sign language classes to parents. I was motivated and excited to begin, and did all the research I needed to start. Then I ran into the trouble of getting the business and legal issues taken care of. I had a list of tasks that needed to be done, but couldn't figure out the correct order. I was afraid of making a mistake, and in fact I made a small one I was able to fix. But I became paralyzed, unable to move forward. And I started to wonder what was wrong with me, that I couldn't follow through with anything I wanted to do.
I love to read and learn new things and solve problems. So I researched and examined myself and researched some more. I talked with friends and family about what I was discovering, and was given new suggestions. My pain and headaches and insomnia and depression and tiredness and the like all made sense when viewed through the lens of fibromyalgia. I brought up the possibility with my doctor and he looked through my medical records and did the pressure point exam and agreed. Cognitive issues are a part of fibromyalgia too, but I felt that mine may have deeper implications. So I've made an appointment to discuss the possibilities of executive dysfunction and/or inattentive ADHD. I'm old enough to take responsibility for my body and mind and to get the help I need to live life to the fullest.
Some people consider words like fibromyalgia and EDF and ADHD labels, and believe they shouldn't be used. I don't. Words have power, and when you know what words mean, you can do something with them.