I don't even know where to begin with my crazy long history of health. So, rather than getting bogged down with trying to start from the beginning, I am just going to blog about today. Through my entries about my todays, tomorrows and yesterdays, my story will unfold.
The purpose of this blog is twofold. Firstly, it us to just tell my story. Secondly, I hope to resonate with and for others who have been scarred by a flawed society and health care system as you/we try to navigate and renegotiate through a world that is inherent with barriers and ignorance. For example, when I use a handicapped parking spot and people pointedly check to see if I have the requisite parking permit, while I am right there. My personal favourite was the lady that was yelling at me after I pointedly met her looks of disapproval. I have no idea what she was yelling--my doors and windows were closed. But, I suppose it made her feel better. Shrug.
Today, I am home from work for the second day alternating between icing and putting heat on my arms and hands. About a year and a half ago, I had bilateral tendinitis and Dequervans. I could not turn a doorknob or open a baggie. But, I still had to care for my two young children, one of whom was in diapers. How do you change a bum when grasping a diaper is excruciatingly painful? Well, I did, because it needed to be done. My son still needed his mama. And this Mama knew that with a blink of an eye, my baby would no longer be a baby. Well...fast forward through the months and months of a workers comp claim, therapies, assessments, tears, pain and arm braces to today.
Today, I am once again sitting on the couch, pillow in my lap to support my left arm as I apply the heat and ice. My accommodation computer keyboard that my employer provided for me (or perhaps it was WSIB?) --one that splits and tents to keep my arms/hands in neutral broke. It broke!
A minor inconvenience for the average employee, but I am not an average employee.
For I also have Fibromyalgia--a chronic pain, chronic fatigue condition. A condition that is also riddled with skeptism and bias as it is a diagnosis of exclusion. A diagnosis that does not clearly show up on tests. A technician cannot measure pain. A test cannot measure fatigue. So, I live with pain, fatigue, bias and ignorance each and every day.
And without my accommodation keyboard, I was at risk of being thrown back into a pain loop. When a healthy person stubs their toe, they feel extreme pain and then it goes away. Someone with fibro cannot differentiate between the pain of a paper cut or stubbed toe versus the pain of cutting off a limb. And one the pain starts, it can go on and on and on. In a loop. This pain loop can then deplete the serotonin in your brain that helps moderate your mood--leading to depression, which perpetuates the loop. The pain loop--also known as a fibro flare is my and every sufferer of fibro's biggest fear.
So, I ran. I ran to the IT dept as fast as I could to beg, borrow and plea for a replacement keyboard. Sure, they said. No problem, they said. But two days later, the wrong keyboard arrived. The wrong keyboard! Oops! It only took one more day of work, for a total of three days without my accommodation keyboard for my arms/hands to stop working/start hurting. Three days! How ridiculous!
Yesterday morning and again thus morning, my children gave me their favourite toys to keep me company while they are at school and daycare. These toys give me strength and comfort as I try not to think of what will happen if I don't stop this pain loop. Yesterday, I could not even lift the coffee pot to pour myself a cup of liquid caffeine. Today, I am determined to return to work tomorrow. Tomorrow, I will know which truth I will be living.
