![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Here is yet another side of fibromyalgia. When I feel sick, I feel sick hard. Then sensation of illness is nearly crippling. Whatever part of my body is affected will feel like it is being gripped in the clawed hand of a malicious beast. You can imagine. Squeezing, twisting, tearing, ripping, slashing, gnawing. It is my midsection and my head right now. My pulse is pounding violently. And my emetophobia is screaming at me. I'm shaking, I'm sore, I'm aching, I feel like I've got a damn fever. In fact, my temperature is up and my glands are sore, but I have no idea if my body is fighting an infection or if the fibro is attacking me on multiple fronts. Fevers are all too common with this hellish syndrome. This is certainly a hellish syndrome, after all. It keeps fooling the body, lying to the nervous system, tricking the brain.
I don't want to have to stay home sick tomorrow, so I am crossing my fingers and hoping all I need is a good night's sleep and some select tea, maybe a blend of oolong and rooibos.
Adam and I talked about this sort of thing. He revealed that he admires me incredibly -- not in those words, but in a roundabout way. According to him, I have a handful of disabling, debilitating, often crippling medical conditions, health problems that will throw every symptom they can at me at random moments and I never know how I will feel from literally one hour to the next. Yet I wake up every morning, go to my full time day job, come home, make dinner, do chores, have leisure time, and go to bed at a reasonable hour -- all while feeling like I have been repeatedly run over with a truck or beaten with lead pipes. He got rather passionate about comparing that to people who pretend to be sick, who call in asking for time off, who rarely wake up until mid-morning, go to work for four hours and barely do anything, and expect all sorts of things in return. People who say "Oh, I didn't feel like working" like they could actually get away with it. And in the meantime, there are people suffering from far worse symptoms than me. People who can't hold a full time job, or even a part time job, because of their chronic pain and fatigue. Who would give anything, anything in the world, to be able to work, bring in money, have a fucking life.
I make very good money for what I do. I work as an assistant librarian in a corporate law firm in the nation's capital. I don't drive, but public transportation here is excellent. I have a special disability ID card that allows me to access the local bus system and the Metrorail for free, within specific perameters, as long as I show the card to the proper authorities. When other people slide farecards and electronic payment cards through turnstiles, I show my ID card to the station manager and walk through the emergency gate next to the station manager's booth. Or I just show it to the bus driver and find a seat. The ID card puts me in a program where I can call for a car to come take me places, whether it is the metro station, doctor's appointments, etc. If I am ever bad enough where I can't get to the bus, I can arrange for Metro Access to send a car to my house and the driver will come right to my door and help me into the car. I don't often take advantage of this; I don't need to. But it is good to know it is there.
Adam's mother, who is an activist for disabled people's rights, helped me get into the program four years ago.
I am very, very proud of my job, my capability. I have great insurance and benefits. My twice monthly paychecks are enough to pay utility bills plus several other bills, while my husband's paychecks pay for mortgage, groceries, house repairs, and other bills.
I love my job, and my boss, the head librarian, loves my work. Best of all, he looks out for me. He knows when I'm hurting. He sympathizes. There have been days when he sent me home early when I could barely walk or even stay awake. He misses me when I'm home sick or injured. I'm extremely lucky to have a supervisor like him, because a lot of chronic pain sufferers don't have such good luck.
I am tired of naysayers claiming that fibromyalgics are lazy, lying, worthless. I am tired of hearing about people who actually are lazy, lying, worthless, who take advantage of the system, who demand pity while giving nothing back. It's unfair to the rest of us.
I just want to get better. Earlier today made me realize this, when I started feeling so sick.
I want to stop being sick.
I don't want to be sick.
Be lucky and happy for what you have. I tell myself that every single day.
I don't want to have to stay home sick tomorrow, so I am crossing my fingers and hoping all I need is a good night's sleep and some select tea, maybe a blend of oolong and rooibos.
Adam and I talked about this sort of thing. He revealed that he admires me incredibly -- not in those words, but in a roundabout way. According to him, I have a handful of disabling, debilitating, often crippling medical conditions, health problems that will throw every symptom they can at me at random moments and I never know how I will feel from literally one hour to the next. Yet I wake up every morning, go to my full time day job, come home, make dinner, do chores, have leisure time, and go to bed at a reasonable hour -- all while feeling like I have been repeatedly run over with a truck or beaten with lead pipes. He got rather passionate about comparing that to people who pretend to be sick, who call in asking for time off, who rarely wake up until mid-morning, go to work for four hours and barely do anything, and expect all sorts of things in return. People who say "Oh, I didn't feel like working" like they could actually get away with it. And in the meantime, there are people suffering from far worse symptoms than me. People who can't hold a full time job, or even a part time job, because of their chronic pain and fatigue. Who would give anything, anything in the world, to be able to work, bring in money, have a fucking life.
I make very good money for what I do. I work as an assistant librarian in a corporate law firm in the nation's capital. I don't drive, but public transportation here is excellent. I have a special disability ID card that allows me to access the local bus system and the Metrorail for free, within specific perameters, as long as I show the card to the proper authorities. When other people slide farecards and electronic payment cards through turnstiles, I show my ID card to the station manager and walk through the emergency gate next to the station manager's booth. Or I just show it to the bus driver and find a seat. The ID card puts me in a program where I can call for a car to come take me places, whether it is the metro station, doctor's appointments, etc. If I am ever bad enough where I can't get to the bus, I can arrange for Metro Access to send a car to my house and the driver will come right to my door and help me into the car. I don't often take advantage of this; I don't need to. But it is good to know it is there.
Adam's mother, who is an activist for disabled people's rights, helped me get into the program four years ago.
I am very, very proud of my job, my capability. I have great insurance and benefits. My twice monthly paychecks are enough to pay utility bills plus several other bills, while my husband's paychecks pay for mortgage, groceries, house repairs, and other bills.
I love my job, and my boss, the head librarian, loves my work. Best of all, he looks out for me. He knows when I'm hurting. He sympathizes. There have been days when he sent me home early when I could barely walk or even stay awake. He misses me when I'm home sick or injured. I'm extremely lucky to have a supervisor like him, because a lot of chronic pain sufferers don't have such good luck.
I am tired of naysayers claiming that fibromyalgics are lazy, lying, worthless. I am tired of hearing about people who actually are lazy, lying, worthless, who take advantage of the system, who demand pity while giving nothing back. It's unfair to the rest of us.
I just want to get better. Earlier today made me realize this, when I started feeling so sick.
I want to stop being sick.
I don't want to be sick.
Be lucky and happy for what you have. I tell myself that every single day.
