When I'm frustrated with myself and my body, I see my biases at work - by Lisa Weber from Scleroderma News
I sat on the shower floor in complete exhaustion, a scrubbing brush in one hand and a natural disinfectant in the other. Physically, I was at my breaking point. But the shower was only half-done.
It’s tough throwing in the towel, but my body sometimes just doesn’t cooperate long enough to complete certain tasks. And if I push past the pain and exhaustion, I risk a major flare-up with unrelenting inflammation and fatigue.
So I did what was best for my body. I tapped out and crawled out of the bathroom. I managed enough strength to plop myself on my bed to rest and brainstorm a solution. Failure only happens if I quit!
Finding tools to adapt to my limitations
Did you know the internet has a wealth of results for the search “disabled cleaning tools”? Accepting disabilities caused by my scleroderma doesn’t make me weak. Strategically planning ways to stay independent gives me power over my shortcomings. It takes emotional strength to be unstoppable, and that’s what I strive for each day.
One search turned up a power scrubbing brush, a hand-held pole with a spinning brush to make scrubbing surfaces easier. I was so excited about this new purchase and couldn’t wait to clean the rest of my shower with no effort!
And when that box showed up on my doorstep, I acted like a kid on Christmas morning. I tore open my package, gave it a full charge, and dashed straight to the bathroom to test it.
It started out fantastic! Cleaning bubbles coated each tile, and the brush spun around like helicopter blades. I could clean all day with this nifty tool! I even imagined my future self sipping a glass of wine while nonchalantly moving the pole around.
But there was one problem: The motor died before the last wall was finished. Perhaps I received a defective product? Perhaps my definition of “clean” is too exhausting for any tool or person in this world? I’ll definitely try another brand before giving up, but this experience taught me an important lesson.
Learning to be kind to myself
It’s always so easy to see everyone else’s biases. If, for example, a stranger starts complaining about a “healthy-looking” person using an accessible parking spot, I can clearly see the problem. That person lacks experience with invisible illnesses.
Yet it’s so challenging to see my own biases regarding the broken body I live in. Getting upset about not being able to push through each task until completion is just like yelling at someone for using a designated spot because they don’t require a wheelchair. I wrote a whole column on this topic, but I still struggle with having compassion for myself.
I have to stop getting frustrated with my body for not having enough endurance to withstand what I thought was a simple household chore. Cleaning a shower from top to bottom is demanding. The scrubbing tool I purchased came with a high-powered motor and reviews boasted about its strength. Yet it didn’t survive one round in my home!
I don’t feel as bad about my arms turning to Jell-O and my hands cramping up. My muscles don’t come with rechargeable lithium batteries. And while I wish I could trade in or upgrade my broken body parts, I’m still proud of them for kicking back into action after a good rest.
Managing daily demands is more challenging with a scleroderma diagnosis, but it’s not impossible. Many tools on the market help make each task easier. It just takes a bit of trial and error to find the right ones. And when all else fails, breaking up each task into smaller, manageable parts can save the day.
The only things that matter are refusing to give up and remembering to have compassion for yourself. Living stronger than scleroderma is all about finding ways to accept what cannot be changed and ways to keep moving forward.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
Scleroderma Queensland Support Group