Syringomyelia is:(sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms
within the spinal cord. This cyst, called a syrinx,
expands and elongates over time,
destroying a portion of the spinal cord from its center and expanding
outward. As a syrinx
widens it compresses and injures
nerve fibers that carry information from the brain to the extremities.
Damage to the spinal
cord often leads to progressive
weakness in the arms and legs, stiffness in the back, shoulders, arms,
or legs, and chronic,
severe pain. Other symptoms may
include headaches, a loss of the ability to feel extremes of hot or cold
(especially in the
hands), and loss of bladder and
other functions. Each individual experiences a different combination of
symptoms depending
on where in the spinal cord the
syrinx forms and how far it extends. Signs of the disorder tend to
develop slowly, although
sudden onset may occur with coughing
or straining.
People with chronic illness would trade ANYTHING not to have them, Having Syringomyelia is not a badge of honor. How anyone would think that I prefer spending a minimum of one day a week carrying around a bucket to puke in, or spending 60 dollars a month on medications, or having to tell my nieces that Aunt KJ can't lift them up? Or spending an entire day in bed with a towel over my eyes and an ice pack on my chest, IN JANUARY is my idea of a good time?
I tell them, what drugs are YOU on?
As for the cancer argument (yes I actually had someone say, you should be happy you don't have cancer) There are treatments, and sometimes even cures for cancer. My father and brother and Uncle died of cancer, my Nana had breast cancer, CANCER SUCKS...FUCK CANCER. That said, when people get cancer no one tells them DAILY to buck up and be tough.
I also hear the argument "I have a friend who has NO ARMS and she works 40 hours a week!" or "My friend is in a wheelchair and he works 35 hours from his house!"
How many times do I have to say that ME having a chronic degenerative disease does not UNDERMINE another persons disability?
Its not a god damn competition!
I "look" healthy. I work 25 hours a week, I try not to bitch and complain too much, but often I feel like people need to know "today is a shit day, I am hurting, there will be no productivity" I don't say it to get sympathy or attention, I say it so that people may possibly understand that Chronic Illness is a tempermental testy bitch of a disease and comes on for NO reason. I have tried every diet, every supplement, every medication to make me "normal" I went from being a firefighter who worked 50 hours a week to being a person who can barely eek through yoga and daily walks and works 25 hours a week. NO ONE IN ThEIR RIGHT MIND CHOOSES TO BE THIS WAY.
I know opinions are like assholes and everyone has them. I hear people say "If you stopped eating meat you would be better, If you got rid of your pets you would be better, if you used essential oils you would be better, rub dirt and beer on it and you will be better"
Know that I have CAREFULLY made all my choices and work every day to attempt to be the best version of myself. No one with chronic illness is helped by being told your non medical, non expert based personal opinion of how to "get better" If we all spent that energy on trying to be a better version of ourselves instead of constantly judging other people think what we would accomplish.
On that note, I am off to take my ABD Kayne Michael for a short walk because it is the HIGHLIGHT of my day. He is my non judgmental, always willing to snuggle, completely loyal dog who never judges mommy for carrying around a puke bucket, or daddy for following mommy around with a shop vac.
Hug your kids and pets.
KJ
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