Life can be hard. Sometimes you just want to curl up in a ball and hide. It is good to remember during those times that a ball can roll. So roll with the punches and keep moving forward.
The absence of pain is good, the inability to focus for more than 3 seconds is not so good.
But on the bright side, my kids find my sing-a-longs to 1980s music quite amusing.
The compassionate being desires to assist, to ease another’s burden. While a compassionate nature may be natural for many, the compassionate course of action can still seem fraught with uncertainty.
Observation of another’s behavior or need is not enough. The compassionate being must look beyond the symptoms and try to discern the cause of the symptoms. Only when the cause is understood can one truly act in a manner that is both compassionate and helpful.
An example I like to share deals with fibromyalgia. Years ago after an auto accident derailed me from my regular exercise routine, I was determined to get back on track, but unfortunately every time I tried to return to a routine which included exercise I would get sick. All of my symptoms indicated I had the stomach flu. I was nauseated, had chills, and ached all over. Compounding these symptoms was the feeling that I had over-done my efforts, often due to muscle soreness similar to overuse. For nearly ten years I struggled with these symptoms. Diagnosis was a tremendous relief and required a big change. I had to rethink much of what I knew about pain. With fibromyalgia one must move through the pain, taking time off as with exercise injury pain was not the solution. The very treatment I was implementing before diagnosis was, in reality, making my situation worse.
Many of the symptoms we see exhibited by other struggling or suffering through life can be easily observed but also be easily misdiagnosed. If we truly wish to compassionately help others, we must take the time to understand rather than simply observe. Without the investment of time, we may, in our compassionate desire to help, actually hinder the person we wish to help. “It is the thought that counts,” may be true with holiday gift giving, but it is not necessarily true when we try to show compassion. Well-meaning comments, suggestions, and acts can truly make a struggle worse.
When compassion surfaces, take the time to listen and learn; ask in what way you can act. If time is a commodity of which you have little, consider charitable contributions to organizations dedicated to serving people in need. It is better than well-meaning acts of compassion which are misplaced because of misdiagnosis. The last thing you would wish to do in your effort to show compassion is to cause harm because you are interpreting the symptoms incorrectly. When the desire to show your compassion is strong but your time is limited, help those who are dedicated to helping. While nothing can replace the investment in friendship and time, economic contribution is certainly better than shuffling compassion aside.
It was bound to happen. A spring and summer of taking back my life through many small steps and a few big ones was bound to bring on a full blown fibromyalgia attack. College reunions, exercise programs, teenagers planning for college, a husband’s ever present military commitment, and of course registering for my first Master’s Degree courses, it’s a lot for three months. Oh yeah, and I found a new dentist after a couple really bad dental experiences (big stress). So, I was not surprised when the pain began taking over every evening around 6pm. Fortunately most evenings were spent laughing through The Big Bang Theory marathons. While laughing didn’t ease the pain, only distracted me, it did relax me enough so I was able to sleep well each night.
Each morning I woke up and continued with my exercise program, making slow progress, but progress none-the-less. Then the fatigue arrived, coupled with a persistent low-grade migraine. Multiple naps became my daily salvation and keep me on track. I was still able to function, just had to pare back some of my daily expectations. No problem, I was doing well at managing my condition by making small adjustments each day rather than throwing in the towel.
The stress of dental work should never be underestimated, especially if one has had a terrible dental experience in the past, let alone two such experiences. So as Monday afternoon approached, and my low-grade migraine threatened to escalate, I finally broke down and took one of my last resort pain pills; a preemptive strike, but a wise one. My new dentist is an angel! Between her compassionate nature and the pain pill, my migraine behaved, even while my fatigue escalated. That evening, despite my best efforts, the queasiness arrived in full force.
I was glad I had exercised Monday morning; it afforded me a rest day Tuesday. The queasiness persisted, so I rested and prayed for a better Wednesday. Sometimes you have to facilitate the answers to your own prayers, today was that kind of day.
Fibromyalgia when at its worst (for me at least), mimics flu like symptoms: fever-like aches, chills, upset stomach, and oddly a desire to eat constantly only to then feel more ill afterward. These symptoms were the bane of my existence for nearly a decade before I finally understood them. They represent my wall, the great obstacle standing between me and my goals. Today I hit that wall, and then I climbed over it.
When common sense said, “Sleep until the queasiness wears off,” I laced on my shoes instead. It wasn’t a long walk by most people’s standards, just a mile. A mile in the wind, a mile with a sick stomach, a mile with a prickling forehead, but a mile representing my success, my desire to overcome.
Guess what? It worked. I feel no worse for wear, but slightly better. Plus I know there is always this afternoon for a nap. In the past couple of years I have learned light exercise reduces the pain associated with fibromyalgia, now I understand that unlike with a real flu, light exercise won’t make me feel worse, but will make the day feel more accomplished.
I am now in uncharted territory, with one wall crossed. Who knows what tomorrow will bring, maybe new walls, but I can feel my confidence returning. I feel as if my days of sitting at the base of a tall wall, tears of frustration running down my cheeks, are behind me. If need be I will cry as I climb over, but climb I will.
I have been struggling with a dilemma for some time – get a handicap pass or not. I am so worried about how I will be perceived when I get out of my car – not the handicapped part – but the part where I don’t look handicapped. Often when I begin my shopping trips, I feel relatively fine. When I walk into the grocery store, I usually don’t need my cane and so I leave it in my car. However by the time I am finished, I can be very fatigued and the pain and stiffness can affect my walking. Unless it has been a terribly stressful day out, I can still manage without my cane, just more slowly.
I am fortunate to have a husband who supports me and my restricted lifestyle, both emotionally and financially. I also have two amazing kids, who seldom let me go out-and-about without one of them as co-pilot. But my husband is military and sometimes must leave home, and my kids are nearing college age. The reality I won’t always have their help and buffer is settling in and forcing me to deal with my fibromyalgia in a new way.
Many times when I have been overextending myself with errands, I resort to using the handicapped restroom facilities. I feel self-conscious about doing so because I don’t look handicapped. I worry about the person who might challenge me, setting off an anxiety attack. Anxiety is a major trigger for my fibromyalgia pain which in turn triggers crippling fatigue. While I have learned to keep the anxiety at bay under normal circumstances, confrontations are very difficult for me and will usually put an end to my plans for the day.
I know I am not alone in my worry over perception and subsequent confrontations. Sufferers of many types of disabilities, suffer invisibly. Sadly, it seems the stronger you are and the more you challenge yourself to live a normal life, the more you are disbelieved. “You look normal,” becomes a burden not a relief to hear, because it always seems tainted with disbelief and accusation.
Now I am planning a trip to DC with my family to see all the museums. I know I will need to rent a wheelchair if I am going to make it through the trip. Luckily wheelchairs are available for rent at most public locations now. It won’t be the first time I will resort to such measures; I have utilized the wheelchairs available at our military shopping facility. However, on the base where people are more aware of the unseen injuries of war, I feel less self-conscious.
Over the years, I have learned that talking about my worries and my experiences helps me to both feel better and helps others feel informed. So today I have chosen to cry, and write, and hope that by posting this I will feel more confident in my decision to get a handicap pass for my car. And maybe if a concerned citizen decides to challenge me or another invisible sufferer in a parking lot someday, one of you readers will be there to come to our defense.
* The following is a painfully accurate account of another Invisible Sufferer Privilege and Prejudice: Disabled Parking with an Invisible Illness
While I appreciate the fact that TV commercials are bringing to light the existence of Fibromyalgia, it bothers me that the perception they present is that Fibromyalgia is only about the pain. Of course it is the drug manufactures who are paying for the commercials, so they have a vested interest in promoting the pain reducing benefits of their drugs.
However, the very real and potentially disabling pain is only one of the many symptoms that Fibromyalgia sufferers face on a daily basis. From my own experience, reading and conversations with medical professionals, it seems that Fibromyalgia affects individuals in various ways. Some may get a few symptoms, some may get a lot. Symptoms can range from intense bouts, or to unrelenting daily ordeals.
The medical community’s understanding of Fibromyalgia seems to still be in its infancy or at least its childhood. When I was diagnosed, I was very fortunate to have access to a medical provider who preferred using drugs only as a last resort. This was very fortunate for me because I have a tendency to have the side effects so often listed in drug disclaimers.
I will never forget the day when I finally became too frustrated with the pain and knew I had to find an answer. I had just turned thirty-eight and could barely sit up straight. I could no longer pinch my thumb and index finger together with any force, and for a hand quilter this was devastating. Rather than give up I turned to my computer and did a search of my symptoms. To my utter surprise Fibromyalgia immediately popped up on the screen. What surprised me more was the list of secondary symptoms that accompanied pain.
Now I use the term “secondary” only because of the widespread notion that pain is the only symptom. However I do not consider these symptoms secondary in any way. You see, I have suffered from Fibromyalgia since I was an early teen. I can trace the symptoms back at least that far and can pin point two traumatic events that might have triggered the symptoms during those years. I was a functioning, productive person through my teens and twenties, never letting the pain stop me. Truthfully, during those years, I didn’t realize I was different from anyone else, and for the most part I had learned to push the pain to the back of my brain where it wouldn’t interfere with my plans.
By thirty-eight other symptoms were becoming real problems for me. The biggest was the “Fibro Fog”. I began to really worry because my short term memory was terrible. I would also have times where my vision and hearing wouldn’t seem right. Not to mention stomach issues, anxiety, headaches and dizziness. Everything just seemed to be falling apart and I felt really old. I was especially upset because commercials said, “Depression hurts!” I knew I wasn’t depressed, my family knew I wasn’t depressed, but I did hurt and it wouldn’t go away.
I am not much of a “why me” person but more of “why doesn’t anyone understand me” type when I don’t feel well. I kept asking the question, “How did I get this way?” I knew that a spine injury at thirty had started my downward spiral. I had been a runner before then, but even with great medical help and therapy, I just couldn’t get healthy. Every time I would get back into my exercise routine I would feel like I had the flu. Sometimes it would be so bad that I would take a pregnancy test because I felt like I had morning sickness. So not feeling well, I would stop the exercise and sleep more. Needless to say the symptoms would reduce for a while so I would try it all over again. For eight years I did this. I also put on weight, reduced my work load and became virtually stranded in my home. To all those who knew me other than my family, I seemed relatively fine, but the myth was shattered the year I turned thirty-eight because I knew my mom was dying and the knowledge was crippling me; my mom was only sixty-four. When my recent visit to a hand specialist left both the doctor and me in tears, I knew that I had to find out if anyone else suffered like me.
I really have been blessed in so many ways during the years since I was diagnosed. I have had great family support, good counsel from a companionate doctor, a bishop who would listen when I needed to burden someone besides my family and who would give me work to do so I wouldn’t feel so useless.
Regardless of the support I have received, one of the hardest things to overcome has been the confusion over what Fibromyalgia is. There have been times I have wanted to carry the WebMD’s symptom sheet (http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms) around with me just so that I wouldn’t have to answer the questions. Sadly I get the feeling that people think, “Just take a pill”. When I encounter people with or who have family who suffer from Fibromyalgia, I am asked, “What do you medication do you take?”
Well I don’t take Fibromyalgia medication, but I support those who do. I sleep when the fatigue is unbearable and I work when I am awake. I try to eat well, and binge on cheese rather than chocolate when the pain is bad. I try to drink water when my body tells me I am not thirsty but I know I should be. I try to drink milk regularly because it seems to cut down on my heartburn. I use an electric blanket or really hot baths when my skin hurts and my bones feel frozen to the core. I often take naps after sunrise and avoid driving at sunset. I take pain killers when my head feels like it will explode, but avoid them for other pains. I have learned to exercise slowly and find new ways to keep moving even when it hurts. Most importantly I look for positive things to do when I feel good. I make the most of those prime days; days when the weather is calm and the barometer is steady. Oh yea, I have learned to laugh more and I encourage my family to laugh more as well.