It's Called a "Syndrome"
I live with a constant passenger that is always by my side. I did not choose it, but I will never be rid of it, and so I must make it my friend. This passenger is called a "syndrome," a combination of symptoms with an unexplainable cause. For while doctors know what happens when one has this syndrome, they cannot explain why it happens. For years, fibromyalgia was not even taken seriously because it is so mysterious. It comes on without reason, and stays forever despite treatment. It can be managable or wildly out of control, shifting from day to day, also without reason.
My syndrome includes flare-ups that nearly cripple me in pain. I have had many days where the pain is bad enough to prohibit hair brushing, or showers, or lifting a gallon of milk. I cannot lift anything of any significant size anymore, I have no energy, I have weird, inconsistent sleeping patterns, and the pain wanders from side to side and muscle to muscle throughout my body. My muscles in my neck are a solid block of concrete, simultaneously being stabbed and set on fire. The muscles in my back are so weak because my neck has caused bad posture, and sitting in sturdy, straight chairs can level to the ground for days.
The fatigue is like nothing I've ever felt, no matter how sick I've been before or with what. I have a hard time explaining to others why I was fine in the morning and can barely get off the couch in the afternoon, and many plans I've made with friends have been cancelled at the last moment because the pain is so erratic. I worry I will end up mosty alone because taking care of myself has become a priority over my social life. But most of the time, I am simply too tired to smile and laugh for hours out in public. I do not want to embarrass myself by spending an evening trying to hide cringes and rub my muscles incessently.
Depression and anxiety are also characteristics of my constant passenger. Doctors tried to convince me for years that the depression was causing the pain and not the other way around, but deep inside I knew better. I tried to tell them all I was not normally depressed or so incredibly anxious, but after being ignored for long enough I even started to think I was wrong. When the name for my syndrome came along, I sighed the sigh of someone who has been given a life sentence but at least knows their fate. I wasn't wrong. I wasn't crazy. But I wasn't going to get better, either.
My syndrome is permanent. There is no cure, and barely any treatment. Most doctors are so unfamiliar with it that they just throw pills at me without doing the research. Anti-inflammatory drugs have no effect. Muscle relaxers work mildly, but put me to sleep almost immediately. Anti-depressants have made me suicidal and useless. Steroids have done absolutely nothing for the pain. I have been on so many kinds of combinations of pills during the past few years, I can't even keep track of them anymore. The dosages, times of consumption, and combinations have all been changed in nearly every way possible. There is (1) approved medicine for this syndrome, and my doctor advised against it because the main side effect is sleepiness. For a syndrome that already makes you incredibly fatigued, that's an unbearable side effect. The shelf in my linen closet where I keep my meds looks like a pharmacy. When my friends have ailments, I simply go to my closet and pick them out something I'm not using anymore, and there's plenty to choose from.
I have to make this passenger my friend, because it can so easily be my worst enemy. I have to be the driver and not let it take over my life. Syndrome. Permanent syndrome. It's here to stay, but I have to be, too. I have to live with these things without complaint, without tears, without excuses.
My syndrome includes flare-ups that nearly cripple me in pain. I have had many days where the pain is bad enough to prohibit hair brushing, or showers, or lifting a gallon of milk. I cannot lift anything of any significant size anymore, I have no energy, I have weird, inconsistent sleeping patterns, and the pain wanders from side to side and muscle to muscle throughout my body. My muscles in my neck are a solid block of concrete, simultaneously being stabbed and set on fire. The muscles in my back are so weak because my neck has caused bad posture, and sitting in sturdy, straight chairs can level to the ground for days.
The fatigue is like nothing I've ever felt, no matter how sick I've been before or with what. I have a hard time explaining to others why I was fine in the morning and can barely get off the couch in the afternoon, and many plans I've made with friends have been cancelled at the last moment because the pain is so erratic. I worry I will end up mosty alone because taking care of myself has become a priority over my social life. But most of the time, I am simply too tired to smile and laugh for hours out in public. I do not want to embarrass myself by spending an evening trying to hide cringes and rub my muscles incessently.
Depression and anxiety are also characteristics of my constant passenger. Doctors tried to convince me for years that the depression was causing the pain and not the other way around, but deep inside I knew better. I tried to tell them all I was not normally depressed or so incredibly anxious, but after being ignored for long enough I even started to think I was wrong. When the name for my syndrome came along, I sighed the sigh of someone who has been given a life sentence but at least knows their fate. I wasn't wrong. I wasn't crazy. But I wasn't going to get better, either.
My syndrome is permanent. There is no cure, and barely any treatment. Most doctors are so unfamiliar with it that they just throw pills at me without doing the research. Anti-inflammatory drugs have no effect. Muscle relaxers work mildly, but put me to sleep almost immediately. Anti-depressants have made me suicidal and useless. Steroids have done absolutely nothing for the pain. I have been on so many kinds of combinations of pills during the past few years, I can't even keep track of them anymore. The dosages, times of consumption, and combinations have all been changed in nearly every way possible. There is (1) approved medicine for this syndrome, and my doctor advised against it because the main side effect is sleepiness. For a syndrome that already makes you incredibly fatigued, that's an unbearable side effect. The shelf in my linen closet where I keep my meds looks like a pharmacy. When my friends have ailments, I simply go to my closet and pick them out something I'm not using anymore, and there's plenty to choose from.
I have to make this passenger my friend, because it can so easily be my worst enemy. I have to be the driver and not let it take over my life. Syndrome. Permanent syndrome. It's here to stay, but I have to be, too. I have to live with these things without complaint, without tears, without excuses.