Tuesday, 21 April 2009
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In which I talk here about what I never talk about in my real life
Things are coming to a head again with my Chronic Fatigue & Immune Dysfunction Syndrome. Various things lately have just started making me NOT okay with being sick. It's such a debihiliating thing, but one I feel embarrased talking about. I didn't even tell them at work until after 6 months when it began interfering with my ability to work. I'm so sensitive about being called hypochondriac, or seen as lazy, or making excuses - because when I got sick, eight years ago, that was the only reaction I recieved, from doctors, and even from close friends and family. But then sitting around trying to justify, No, THIS IS REAL! just enforces those stereotypes even more.
In my day to day life, I avoid talking about it as much as possible, even with friends. When I finally tell someone, I have carefully prepared explanations that speak to its validity by pointing out the factual physiological symptoms: So I have this chronic illness where I get easily exhausted and dizzy. There's a problem at the adrenal level where the adrenal glands are over-active, as if fighting off a virus, even though no virus has been detected. But because of this, I often run a fever and have muscle weakness and sensitivity. I was in a research study for CFS at the DePaul University in Chicago and was in wheelchair for several years, and bed-bound for about a year after that. In the past three years, I have gotten a lot more mobile, started working some, started trying to get into school.
It's not as bad as other diseases. I am incredibly lucky in light of life-threatening diseases, illnesses, cancer, and degenerative diseases. I can be a mother and still achieve the new goals I have created for myself. But I cannot work, or hold down a part time job, at least not for very long. I cannot clean my house or do household chores. I cannot solely take care of my child for long stretches at a time.
I keep trying to pretend that I am okay, that I am normal, that I can do things that everyone else can do. It's like I believe the reactions I got - that this is not real, that I'm making a big deal out of nothing. But after working four hours last Saturday sitting down here at my job here at the call center, when my hands were shaking with exhaustion, and I felt nauseaus with exhaustion, when I was crying uncontrolably this morning driving into work because this is my long 9 hour day, and I don't know how I'm going to get through it - I just need to step back and say, stop, hold it. You are sick. You cannot do the things regular people can do. You cannot do this. You keep pushing, trying to deny that you are sick, and it keeps kicking you in the ass.
All this to say, I'm thinking of giving my two weeks notice, but then, I don't know what the hell will happen with our finances. Dragos is getting a raise, so that might help, and its gonna reach a point where it doesn't even matter if it means we have to take on a little debt again, somethings gotta give. At least CFIDS is gaining more and more recognition as a valid disability. Certain cases are eligible for disability and social security. More research is being done to objectively diagnose. This from the CFIDS Association of America:
We want to be able to
offer morethan hope
to patients and their families,whose lives have been so altered
by this debilitating illness. We want to
be able to offer physicians
tools toobjectively diagnose, then
effectively treat,
this illness. Untilwe have a cure, that’s the next important
step.
SUZANNE VERNON, PHDScientific director, CFIDS Association of America
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