If You're Still Trying to Get Used to the Messiness of Chronic Illness


I cleaned my bathtub the other day. Spoonies, you get how astounding that statement is. My tub is not one of those shallow rectangular trays; rather, it is an oval of what feels like infinite depth when I am cleaning it (and not quite deep enough when I’m in it). And it’s wide. Wide enough to have me considering removing a few of my bottom ribs when I lean across to try to scrub the other side. All this to say, my tub is generally coated with a thin veil of ick.

Chronic illness teaches you a lot of things. The movies make it seem like it’s all about learning what’s really important in life, to cherish every moment, to be grateful, to find the true strength of the human spirit. That can happen, yes. But, the movies don’t show how you learn to tolerate things you never thought you would.

Sometimes it’s getting used to having no privacy as caregivers and medical professionals poke around in places you forgot you had. Sometimes it’s putting up with long-winded, albeit heartfelt and well-intended, advice about how to cure your chronic medical conditions by putting kale in your ears at night because it worked for your friend’s sister’s ex-boyfriend’s dog’s new owner who had something that was not anything like what you have. (Note: Please, for the love of all things holy, do not put kale in your ear. This was an exaggeration for comedic effect.) Sometimes it’s getting used to sending “thanks for inviting me — I wish I could be there” text messages so often that your phone auto predicts the entire sentence.

And sometimes it’s getting used to messiness. I used to clean my entire apartment top to bottom every week. Including vacuuming. At one point, due to events that are a very long story having to do with roommates, personality disorders, and a bowl of Cheerio’s, I was living for a few months in a three-story townhouse by myself, and I cleaned that whole sucker weekly too. Even after my first few chronic illnesses showed up, I managed to do it. Not as well, not every week, but I did it. Then more chronic conditions decided to join the party, and now I sit on the toilet and name the clumps of pet fur that float by. The tub wears its veil. At one point, I slept under a blanket that had a (small, mind you) amount of cat vomit on it because I was too achy in the morning to wash it and too tired in the evening to remember until I actually got into bed. Once I’m lying in bed, it’s game over for my psoriatic arthritis. The longer I lie there, the more my joints freeze up, morphing me into the pre-oiling Tin Man from “Wizard of Oz” by the time the sun rises.

So I’m getting used to the mess. I struggled against that for so long, trying to hold myself to my old standards. It’s been a long, dusty road to acceptance. I still don’t like it. I still have to swallow apologies and explanations whenever someone comes over. I’m still cleaning, one little piece at a time, but it’s never all clean at once. Never health-department bad, either, which is a win, and I’m grateful to be able to do that much.

Acceptance has also allowed me to spend energy on other things besides struggling with how things should be. I admitted I needed help, and in that process I found out that there are cordless electric scrub brush things that I can use on my tub — and they’re long enough that I don’t have to kneel down to do it! It was powerful and took a little arm and core strength to control it, but it didn’t lead me to flare the next day like cleaning the tub usually does. I’m keeping an eye out for more helpful tools.

I don’t know what it is that you are struggling with, but I hope you can find a way to accept your own messiness and then be open to the help that can show up in unexpected ways. Like a three-foot long metal pole with a whirring brush on the end.

Until next time…May your spoons be plentiful and your heart open!

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