Sickness

[brightlotusmoon]

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.

Comments

[wishkey.livejournal.com]

When I think of what you have to do to get through every day, I get so disgusted with a few women I know who spend the day in bed because they are having their period, or guys who have a sick headache because they mixed the wrong drinks the night before.

[brightlotusmoon.livejournal.com]

Yeah, I know what you mean!

I never spend the day in bed even when my period is violently painful and evil. Sometimes I spend half of it on the couch. ;-)

[wishkey.livejournal.com]

You, I think, are entitled to the occasional lay-about.

The people I have in mind have no reason except they are, in my mind, whiners. Get up, pop a pill and do some yoga, for pete's sake, before I have to call the waaaaahmbulance.

[brightlotusmoon.livejournal.com]

Ah, yes.
"Hey, why are you still in bed? Are you sick?"
"No, I just have a headache and cramps."
"Oh, like a horrible throbbing migraine and ovary-wrenching gut-twisting spasms?"
"Um, no... just a headache and cramps. They're not that bad. But I feel like staying home from work. Could you bring me some tea and oatmeal? And an extra pillow?"

[shaula82.livejournal.com]

This is really not very nice, you know. I think it's possible to acknowledge and admire rosefox8's courage and determination in the face of what she has to go through every day (which OMG I do!) - without having a go at anyone else who is not feeling well, or "ranking" illness. Without a doubt, rosefox8 suffers more than most people I know, but that doesn't mean I would scoff at anyone else who experiencing pain. Most people do not experience the same levels of pain as rosefox8 - hence they can't compare the pain and discomfort they suffer with hers (but this doesn't render it meaningless).

Hangovers I have less sympathy for than periods (for myself and others) - it is a fully voluntary decision to drink and how much you drink, but most women naturally have periods and even if we do "pop a pill" and "do some yoga" we might not always feel stellar for something that is natural and not our doing.

Like you, though, I find rosefox8 inspiring and strong.

[brightlotusmoon.livejournal.com]

Well, what she means is when people are faking an illness, pretending it's worse than it actually is, just to get pity and sympathy.

[shaula82.livejournal.com]

That I don't condone at all!

I have taken a couple of "mental health" days over my working life - days when I wasn't physically sick but wasn't well mentally and needed a break (and I didn't think I'd be able to function well at work). Unfortunately I couldn't say so to my boss or log it into the system as "mental health day" - I had to say I'm physically ill, which I didn't like at all.

Anyway - I certainly wasn't trying to derail the purpose of your post! I think what you're doing is great. One of the things I love about your posts is how much you enjoy life - how much you enjoy your environment, your husband and friends, your food, your kitties, your work, and even exercise - despite the hurdles in your way. I really admire that.

[brightlotusmoon.livejournal.com]

*smiles* It's all good! (I'll never understand exaggerating illness just for pity.)
I like mental health days, myself.

[wishkey.livejournal.com]

Having a period and getting drunk and hungover are not illnesses or disorders.

In the case one of the persons I was referencing (and I was referencing particular people in my life), nothing excruciating by her own admission -- she just doesn't feel like going to work on days he has her period and admits it. I don't even know how she gets away with taking that much time off of work.

When I think about how men used to use "women's weaknesses" and their menstrual cycle as a reason for excluding them from many types of jobs and other opportunities...how women had to prove themselves capable, had to prove that their period would not stop them from doing anything they put their mind to, that's when I get infuriated. I thought we had gone beyond all that.

[shaula82.livejournal.com]

Equality is not about giving everyone the same thing. Equality is about giving everyone what they need.

[walksbeauty.livejournal.com]

Bravery, wisdom & great fortitude! You are cultivating greatness... How FORTUNATE to have the benefits of these programs for transportation and safetY!

My friend, Mary, said her cancer was her best friend.. she learned more about herself and how to live from it more than anythign else.

All we are given gives us the opportunity to grow, be better & STRONGER! Chinese character for Crisis also means Opportunity. YOU are one who grows and learns and has more compassion for others as you give it to yourself!

[brightlotusmoon.livejournal.com]

Yes. :)

(Really, that's all I can say. Heh.)

[sophy.livejournal.com]

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 fall into that category, and I find you very inspiring, too. I know you can't compare illness levels, but when I think you've got most of what I have PLUS other things and yet are able to work and do all that you do, it does amaze me. Maybe someday I'll get back to that point, too. But in the meantime, like you, I'm so grateful for what health I do have. I know others worse off than me and it helps me to remember to take full advantage of every ounce of energy and health I can!

[khongashes.livejournal.com]

it's uplifting to hear that you seem to appreciate what you have and while living your life as best as you can, you are able to enjoy things and you seem to be happy and imaginative despite unfavorable health conditions and debilitating pain. and then there are those who live their lives unhappy! refusing to appreciate their own health. that makes me angry and i feel sad for these people.

a little question, did you earn an MLIS in order to become a librarian's assistant?

[brightlotusmoon.livejournal.com]

Actually, no I didn't have an MLIS -- but eventually I want to get one. I got the job through a temp agency. The law firm was desperate for a library assistant, and the temp agency let me work with the librarian for three weeks with an option to hire. He and I got along so well that he asked to keep me on permanently.

[khongashes.livejournal.com]

wow thats excellent. my boyfriend is about to take the GRE to get into MLIS programs. ill have to let him know to consider temp agencies for experience. im glad you love your job. what an important thing in life

[hilarina.livejournal.com]

i agree with your husband. i think you are doing awesome and i know you work so hard to function. I am so glad you have an understanding boss who can appreciate you and still accept your disabilities. I haven't found that yet.