Thursday, September 6, 2018

on living with a chronic illness

Sorry to be a downer...but I do want to give a better idea of why I need to "lazy genius" things sometimes. I will give the disclaimer that I recognize I have it so much better than many, many other people. I neither seek nor deserve sympathy; just want you to see what life can be like sometimes.

I have what's known as Meniere's disease, which basically means that my inner ear retains too much fluid, leading to vertigo and hearing loss. Meniere's is hereditary, but from what I understand, it sort of lays dormant until/unless something brings it to the surface. Mine was brought on by the stress caused during our first foster care placement of two violent, aggressive brothers with special needs. As a side note/additional detail, I don't have health insurance (a whole other story! maybe I'll share in another post), so that's another factor for our family.

When I "get sick", that means that the room feels like it's spinning and because of that dizziness I throw up. If you've ever seen a movie or TV show of people walking through a fun house, and the camera goes all wonky, it's sort of like that. Or sometimes worse. An episode lasts anywhere from 20 minutes to 2 hours, after which I am exhausted and need to sleep for at least a few hours.

So far, God has been gracious in His protection of me. Episodes usually come on slowly (over the course of 5-10 minutes), but occasionally they come out of nowhere. Only once has it happened while I was driving, and I was miraculously in a small downtown right by a parking lot, so I was able to see well enough to pull into the lot, put on my flashers, put the car in park, and wait it out. Only once has it happened at my (very) part-time job, and it was while I was sitting at a desk (versus waiting on a customer), and was able to stumble back to the bathroom. Only once has it happened at church, and I was in nursery, with a friend and another adult, so my friend was able to help me to the bathroom without leaving the kids alone. Many, many times it has happened at home, and only once when my husband wasn't there (but baby was, and he knew enough to help me to the bathroom then call Jake).

Baby asked me the other day, in tears, if I would ever get better. I told him we can absolutely pray for that, and God will absolutely answer that prayer, whether here on earth or when I get to heaven. I am not dying from this (though in the middle of an episode I may wish for that!); I am mostly a stay-at-home mom; Jake works half of the time from home; baby is old enough to take care of himself and even help me; it's really mostly an inconvenience.

So far this year, I've probably had on average 3 episodes per month. That's so easy to handle, y'all. Even though it's miserable and I'm on a ton of medicine (some combinations of which make my heart race) and I'm so beyond tired of being sick...it's not the c-word. And I have an amazing life.

The routines I have, baby's chore list, and my lazy genius homeschool method all make things run smoothly even when I'm out of commission. Baby can even make his own basic noodle and cheese lunch, and Jake is so generous to cook meals when I ask him to.

Maybe your health is excellent - and I pray it is! - or maybe someone in your family suffers from a chronic illness, whatever it may be (even mental illness, can I get an amen?), but I promise you, implementing the little routines and efficiency tips I talk about on this blog are about so much more than living a beautiful life. This world can be harsh, and our lives difficult, and infusing beauty makes it all a little more enjoyable. But sometimes these ways of living are necessary, and if/when that becomes the case for your family, I want you and your family to be equipped to not only manage, but thrive, even in the midst of your chaos.

Do you or someone you love have a chronic illness? As I'm only about two and a half years into this, I'd love to hear more ideas for how to handle it. Share what you know - or any questions you have - in the comments below!

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