Tag Archives: Overcoming Pain

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Invisible Sufferers – Unseen Disabilities

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

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Moments in Time: Monumental Lessons

The first moment I would like to share came when I was nine years old.  My mother, who was running marathons at the time, had a grave concern that I was going to grow up to be overweight, and thus decided to entice me to get fit with a bribe  She offered to take me to New York to participate in an all-female 10K, but only if I could run the distance without stopping beforehand.  The jog around Central Park was much more pleasant than the training runs, due mostly to the fact that my mom left me with some slower runners who were prone to take walking breaks. This moment in time taught me I could do anything if I tried hard enough, and that breaks make tasks much more pleasant to accomplish.

Jump ahead a handful of years to the summer when I was fourteen.  While my grandfather had dairy cows, a couple of his brothers had beef cattle and Quarter Horses.  I loved to ride, and would ride as often as I could convince someone to get me to a horse.  I had ridden with my mom and dad, with my cousins and brothers, even with a few uncles, but never with my grandfather, at least not since I was an infant in his arms.  That summer a unique thing happened, my grandfather took to the saddle one more time. With his older brother, and three grown nephews, he decided to revisit the days when he still used a horse to get the work done.  The men all had saddles, bridles and young mounts.  There was only one horse to be left behind, a thirty year old cattle pony which my mother had trained decades before.  My mom, neglecting to ask me or the men for permission, found an old broken bridle and without much warning, hoisted me up on the beautiful, wise, saddle-less mare. I was instructed to let the horse do the work, hold on and try my best not embarrass my mom.  Then off I went, chasing cows and jumping ditches right alongside my grandfather.  I had never before been as humbled or proud as I was on that day; the day I learned to hold on, stay quiet and cherish the moment.  Although my grandfather lived many more decades that was the last time he rode a horse, and the first time I really knew he was proud of me.

My next moment unfolded during the very first days of my sophomore year in college.  Over the summer, I had worked at a camp in Alabama teaching girls how to ride.  I had earned very little money at the camp, in truth only enough to cover the cost of unlimited riding lessons at college which I so desperately wanted, but which wasn’t covered by my student loans and grants.  It was a hard year to work at a summer camp, record rains kept us fighting mud and humidity.  Plus I had suffered a broken toe just a week into camp, causing me to limp through the remainder of the summer.   To my horror, after a week back at school and back in an English, rather than a Western saddle, my knee was painfully swollen and a trip to the doctor was in order.  As it turned out, all the limping from the broken toe had aggravated an old injury to the point where surgery was advised.  However, surgery was not an option for me.  Besides the fact that knee surgery wasn’t as nice and tidy as it is now; I didn’t have the insurance or funds to cover it.  Riding was therefore replaced by physical therapy. Therapy taught me that I could overcome the obstacle of pain and find a replacement for my lost love of riding. After months of working with the school physical therapist, I became healthy enough to train for the New York Marathon.

So with a marathon completed, I moved on to my next challenge: US Marine Corps Officer Candidate School.  In a mere seven weeks of the ten week program, I was left with tendonitis in all my toes, a torn muscle in my shoulder, a chipped tooth and various other minor injuries; all of which had not stopped my desire to be a Marine.  But then flu-like symptoms, unexplained leg swelling and dizziness set in and I was done. I decided that leaving on my own terms rather than in a wheel chair wasn’t quitting, it was just recognizing that my body wasn’t suited for what my brain wanted to do.   That summer I learned how to laugh instead of cry when I was in pain, even when the pain was from the heartache of leaving something behind.  

There are so many more moments in time I could share, but I will finish with one simple moment that occurred today when I was able to exercise for fifteen minutes on my elliptical machine.  Four years ago, I was advised by my doctor to take things slowly if I wanted to manage my fibromyalgia. When I asked what she meant, she replied, “Five minutes at a time.”  I wasn’t even sure how a person exercised for only five minutes at a time, but I was determined to learn.  I made a goal: have more energy when I turn fifty than I did when I turned forty.  I have had to overcome a lot of frustration. I have had to find a place to start and then I had to start again and again.  I have had to get creative and humble in my approach.   First I bought a cane so I would no longer feel so helpless when the fatigue hit.  Second, I bought a spinning wheel, for while I could not exercise without fatigue, and a strange feeling of guilt; I could spin yarn for hours and feel productive while doing it.  Finally, I gave myself permission to find strength in my weaknesses and opportunities in my limitations.

In our youth, time seemed endless, yet we rushed.  In our maturity, time seems brief, and we savor the moments we have left.

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Fibromyalgia and Me – it’s about more than just the pain!

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.