This following article is every word the truth. My job doesn’t pay…in fact, Marc and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures and treatments not covered by insurance, new supplements well meaning people swear by.
I work every hour, every minute, to the point of beyond exhaustion. There is no break, no vacation. No time off despite excellent behavior and yet – it’s not visable. Everyone I see thinks I’m a-ok as I pretend to be Normal. I even spend energy hiding it from my family. They have no idea how hard I work to appear so. And I want to be Normal. I dream of waking up one day – and all of this misery will just *poof* be over.
If you’ve ever struggled with pain so long and so severe, that you just prayed to die. You know what I mean.
It’s been a nine year string for me. And despite how I focus all my energy on being Well, the physical abuse and mental stress I did to my body while trying to “appear well,” has definitely been part of the cause for adding more comorbid diseases. Hooray. It’s like I got a “raise” or “promotion” on my job!
People don’t know what to do with Chronics. They don’t get it – unless they GET it. We appear lazy, whiners, unreliable, boring, insincere, anxious complainers. Blah Blah Blah. There’s no kicking CM, RA, etc and booting it out of your life. There’s no beating it. No remission. So…we are just … 1) boring and 2) annoying and 3) weird.
I think the only way to explain Chronic to a Normal is in analogies… Imagine having the flu everyday of your life…go to bed with the flu, wake up with the flu…sometimes it’s only aches and pains and a runny nose, other days it’s ALL FLU. Then imagine having to climb Mt Everest with that Flu. Everyday. Mt Everest represents taking a shower, making a dinner for your kids, cleaning a bathroom, doing wash loads, driving to the doctors (where they give you the great news that we can MANAGE your illness, but there is no CURE. And the meds they want you to take bring side effects often worse than the illnesses themselves).
Freaks. Just Freaks. Circus Folk.
I’m good at my job. I’m great at my job. I hate my job. I hate how it robs our family. Just robs us every day with no shame or remorse.
Sometimes…sometimes, I am so done.
An All-Consuming Job
By Kerrie Smyres—June 23, 2016
My job is the first thing I think about each morning. My work factors into every decision I make, from what I eat to whether or not I have sex. It wakes me up multiple times most nights. I never get a break from it. I can’t leave my work at the office after an exhausting day, nor can I escape it by taking a vacation.
While most people think my job is writing and working with the company my husband and I started, those are dalliances compared to my real job. That all-consuming job? Chronic migraine. (My experience is with chronic migraine, but feeling like migraine is a full-time job isn’t limited to those of us with migraine that meet the diagnostic criteria for being chronic.)
When my migraine attacks were at their worst, I expended enormous amounts of physical and mental energy to keep myself going. Others may have thought I was just lying in bed, but I was using everything I had to be sure I’d wake up the next day. To anyone who finds this melodramatic, consider that the World Health Organization has found severe, continuous migraine to cause the same amount of disability as quadriplegia.
I’m doing better now, but I still work constantly so I can hold on to this improvement (or hopefully, increase it). I spend my time monitoring my diet hawkishly, avoiding triggers, researching other treatments, trying to exercise to build up my physical strength, seeking balance so I don’t set off another attack, processing the enormous amount of grief that comes from spending so many years disabled.
My job will never come with the outwardly visible accomplishments, social stature, and wealth that society equates with hard work. But I’ve put in enough effort to be a self-made trillionaire.