How I cope when Cushing's prevents me from taking care of myself

Jan 05, 2024

The importance of preparing for days when taking care of myself is a struggle

by Noura Costany | July 31, 2023

Dealing with Cushing’s disease can be hard, and recently I’ve had more bad days than good ones. My goal is to maintain a positive attitude, no matter how frustrating life gets. Recently, I’ve been working on routines for the days when my cortisol is low, which makes me feel super tired.

One thing I struggle with on bad days is taking care of myself. This can be hard to admit, because there’s so much stigma around hygiene and personal care. However, I’m here to tell you that if self-care is difficult for you due to a chronic or mental illness, you are not alone.

I have a windowsill next to my bed that I keep stocked for low days (though a nightstand would work just fine). No matter how bad things are, dental care, pain management, emotional regulation, and hygiene are necessary for me. Monitoring these four areas may seem simple, but on difficult Cushing’s days, it feels like a monumental task.

I leave floss, a toothbrush, toothpaste, and a cup next to my bed. On days when I can’t get up, I floss, brush my teeth, and spit in the cup. If I don’t have water nearby, I’ll just dry-brush my teeth, which means forgoing toothpaste. Of course, this isn’t ideal, but it gets the job done. I also leave a small ChapStick on my windowsill so that my lips don’t get dry.

I have a collection of items I use for pain management. On my worst days, I usually need compression boots, which improve blood flow, my heating pad, which eases my back and leg pain, and my headache hat, which soothes my head pain.

I keep my headache hat cold in a small fridge next to my bed, which also means I don’t have to walk to my kitchen to get it out of the freezer. I leave most of my pain management items underneath my bed, where I can easily access them, though my windowsill houses aspirin, a form of pain relief that doesn’t conflict with any of my medications.

The days when I can’t physically function can be tough on my mental health. To cope, I keep a pack of amazing fantasy novels next to my bed so I can pick one up at any time. My laptop is always nearby so I can pull up a comfort show (right now it’s mostly anime, but I’ve watched just about everything). I’ve also started reaching out to a friend whenever I feel sick, usually just to say, “Hey, FYI, I’m not doing great today.” I feel more protected and safe knowing that someone is aware of how I’m feeling.

It can be hard to maintain my hygiene when I’m stuck in bed. Oftentimes I’ll be too dizzy to shower, so I keep body (or bathing) wipes on my windowsill that allow me to clean myself while lying down. I also keep cucumber-scented deodorant nearby, which always makes me feel cleaner, and in my little fridge I keep a wet rag that I can run over my skin.

Lastly, I keep a brush and deep conditioner next to my bed. On low days, my hair is the first thing I let go. It can become a bundle of tangles, which is intimidating and hard to tackle when I feel sick. To keep that from happening, I run a brush with conditioner through my hair or weave it into a cute braid.

I know that chronic illness can take a lot out of us, but we don’t have to go it alone.

What works for you when you’re facing similar challenges? Please share in the comments below. You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease 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 Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.

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