My dearly departed grandma was the only one who I felt could totally understand. She truly knew what it is like to be in pain all the time. She understood me in a way that I will never find again, in a way nobody else ever will.
She always had sore arms. She said it felt like a burning sensation, hard pain of some sort. It sounded like her face was scrunching up when she would describe the feeling.
She would have a good day and then feel like she could work, could clean, but the next day the pain would return and then some.
She had chronic insomnia. She would be laying in bed, listening to the clock chime each hour, while my grandpa snored easily beside her. She wouldn’t get up, but would continue lying there.
When I was in kidney failure it began. My brother would jab or prod at my arm in a playful moment and I would flinch, “Ow!”
“Oh that can’t hurt. That didn’t hurt you.” He couldn’t imagine just one little punch to the arm could hurt so much.
I figured it was a part of kidney disease or because my bones had been left without the protection of calcium, lacking as I was in several vitamins and deficient in minerals and a lack of nutrition.
After my kidney transplant everything was good again. I felt great and well and whole again. This would not last.
Soon the pain began and it spread. Headaches were the main focus, but my arms still hurt. My legs hurt too. The aching happened a lot.
Even a gentle pressure to my arm or my leg or my chest. The pain seemed different than hers. My grandma described the burning sensation and that was not me. Was it my bones? Was it my nervous system? The pressure caused an invisible impression in my skin, the resulting pain lingering for several minutes afterward. My head or my arms; it didn’t matter where; the pain was the same.
The first time a doctor said the word “fibromyalgia” to me I hesitated. What my grandma had and what I was now experiencing were nothing alike in my mind. Pain was the word, but the type of pain varied from me to her. I resisted the diagnosis.
Fibromyalgia is a term used to describe everywhere pain. Mine is chronic and it is real and my grandma understood that because she dealt with it every single day, for forty years.
My grandpa wasn’t always so understanding. He thought it couldn’t possibly be as bad as she claimed. He didn’t understand and became frustrated when she couldn’t work and do the things she used to do. She could talk to me and tell me the things he would not or could not comprehend.
Somewhere underneath I knew his love for her never wavered. He was a man and men need to be able to fix the problem. HE couldn’t fix his wife’s biggest problem and he felt like a failure when he couldn’t come through for her.
Years later he would speak of the day he went to the barn to cry. He was powerless to put an end to her suffering. I was relieved, in a way, to hear that his usual reaction of impatience was a cover for the inadequacy he really felt.
During the month of May National Fibromyalgia Awareness is celebrated. Today is National Fibromyalgia Awareness Day, May 12th. I have accepted this is my diagnosis.
Is it hereditary? Did I get it from her? I like to think I got things, traits or inherited genetic similarities, but why this?
Lots of people live with invisible chronic pain all over their bodies, more than one I’ve known and loved. It is easy to dismiss the invisibility of this pain by others. The world does not see what is underneath the surface. Intolerance is a common thing. We must stand up to this intolerance and disbelief and make our suffering known. I will not be silent and let the world ignore.