House Secrets of a Spoonie

So, I’ve got an invisible illness. I’m not in a wheel chair, I have all my hair (well, most of it), I’m not currently stuck in the hospital, and I don’t have an IV poll that I’ve got to tote around. The fun things I do have are things are small subtle things to help me cope with life. I have things like an entire dresser drawer full of vitamins and supplements and weird boring antibiotics. I’m talking about an ENTIRE drawer. That’s a lot of junk. I have a whole old person pill mountain stashed away. If I run out of vitamin D gummies (Shutup. You’d want gummies too if you spent 6 years swallowing thousands of pills) it’s a reason for an emergency Sprouts trip.

I have a stools in weird places like the kitchen. I can’t actually stand up long enough to cook a full meal. I get anxiety if my stool is moved anywhere else. I’ve just gotta know that it’s in the kitchen. I have a stool in my bathroom. Standing to brush my teeth or dry my hair is usually too much. My husband has just gotten used to us having seats everywhere. We don’t think about it. Some people come over and ask why there’s a stool in the kitchen.  My answer is usually just “For sitting” cause I’m annoying like that. Some weeks are better than others and I don’t have to use them as much and I think to myself “Man, this room would look so much bigger without this silly stool in here.” Then I giggle to myself and pat that sweet stool on the head and quietly thank it for keeping me sane and kind of upright.

I have heating pads stashed under couches and inside cabinets in different spots in the house for my knees and elbows and stuff. Sometimes they just don’t work and I’ve still got to figure out how to get downstairs. Heat-pad that sucker and see if it’s enough to get you through the pain of using the staircase.

I have at least a thousand blankets in my house. I don’t have temperature regulation like a normal human. I’m either burning hot or shivering with almost no feeling in my toes. I’m not talking like just a small woman kinda cold, but like an obnoxious kind of cold. I have a sleeping bag that you can unzip the bottom and walk around WHILE you’re wearing it. Dude, I know. It also has arm holes. My husband laughs at me, but I’m obsessed with it. It’s a majestic invention and if I could hug the inventor I would.

Our house looks totally normal. Our lives are far from normal. I’m mostly a wreck. My husband is exceptional. These are four small things of many that we have assimilated into our lifestyle. People with invisible illness sometimes find invisible things to help them cope. You do what you need to do to keep yourself put together.

We all do weird things to keep ourselves together. You don’t have to be a spoonie to understand what it’s like to have fail-safes in your life; things to keep you from falling apart.  Mine just may look a little different from yours, but we’re all fighting a battle. We all have things trying to knock us down. Mine is my own body. Yours could be a number of things. Find what keeps you put together. Find what keeps your friends put together. Foster those things.


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