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The Spoonie Balancing Act

When you’re chronically ill, staying alive is – quite literally – a full-time job. There’s no pay, no benefits, no vacation time, but nonetheless it is a thankless full-time job.

When you’re a parent, keeping a child alive and thriving is – quite literally – a full-time job. There’s no pay, no benefits, no vacation time, but nonetheless it is a thankless full-time job.

With all the time and energy we are forced to dedicate to one or both things, how on earth is anything outside of these even comprehendible? Possible?

Good freaking question!

What if you have no choice but to work? What if you do have a choice, but working is one of the few things you have that makes you still feel “normal”? Where on earth do you find the spoons? You can’t possibly take spoons away from the job of self-preservation and you certainly can’t safely take spoons away from the job of parenting.

So what gives?

I’ll be honest and say that I’m extremely fortunate. Even with more chronic illnesses than I have fingers to count them on, I have more good days than bad. That’s not to say my good day is anywhere near as good as a “normal” person, but still, I’m able to function at a level that allows me to get up, get to work, do what I need to do as a parent, and sometimes even have spoons left over to do things I love like a good lifting or workout, playing my guitars or piano, or keeping in touch with all of you. Sometimes those spoons go to preparing meals for future not-so-good days to stock the freezer. Sometimes I hope to hold onto those spoons for a few more days and just get some rest.

But working on top of everything else is hard. Like, really hard. It’s more difficult than I think most people can ever comprehend. When you’re forced to put your health at risk ironically to afford what you need for your health, it adds another layer of stress to the already stressful worlds of sickness, parenting and employment. What if I lose my job because I’m not keeping up, and can’t afford our home, my meds, my doctors? What if I run out of sick time and have to take unpaid leave? What if my child gets sick and we can’t afford the hospital stay because we just spent our monthly medical budget on my medication refills? What if my colleagues look down on me because I’m not working at the same pace?

Stress is a huge cause of flare-ups. Being sick is stressful. Parenting is stressful. Working is stressful. So where does it end? It’s a vicious cycle, and I think this cycle makes it very clear that when you’re chronically ill, it’s not only necessary, but required, to prioritize your own well-being and mental health. It’s no wonder that I get sicker and throw my body into a flare when I allow work or chasing after a rambunctious threenager to stress me out. And it’s no wonder that when I’m so stressed about getting back to these things instead of allowing myself the rest I need, I end up sicker.

So how do we balance? How do we make it work? If anyone has a legit answer, I am so willing to hear it and learn because I have no idea! Seriously, it’s a struggle, and I think that until the medical community comes up with a way to ease the strife of our illnesses, it will forever be a struggle, because finding balance in being a working parent is already incredibly hard in and of itself. Adding chronic illness(es) to it is like throwing untrained monkeys into the circus. And yet, look at us. Look at us being successful. Look at us enduring. Because we are strong as hell.

#invisibleillness #selfcare #spoonie #autoimmunedisease #ehlersdanlos #fibromyalgia #neuralgia #chronicillness #butyoudontlooksick #behcets #chronicpain #marriage #relationships #lupus #family #workingparents

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