Most of my life with Cushing’s disease is spent in the ‘in-between’

I live most of my life in the “in-between.” There are days when I feel incredibly good, and days when I feel absolutely horrible. But most of the time, I fall somewhere in the middle. It can be hard not to think of Cushing’s disease in extremes. People are often confused to see me unwell one day and fine the next, or vice versa. But chronic illness isn’t a one-day story; it’s a lifetime. And it often affects me in mundane ways.

I wake up around 6 a.m. and take some time for myself while my husband watches the baby. I’ll write, shower, work out, or turn over and get more sleep, depending on what my body needs that day. Lately, I’ve been using this time for reading and writing, but last month, I chose to sleep more often than not.

I start work before 9 a.m. I work remotely for Bionews, the parent company of this website, which is a godsend. Not having to commute means I have energy to dedicate to my work. I do need to take a few breaks throughout the day to feed my daughter and make sure my eyes aren’t strained.

Vision issues are the roughest part of my workday. My visual snow syndrome flares up often, and I’ll get a headache if I stare at a computer too long. So, instead of waiting for it to get bad, I make sure to look away from my screen regularly.

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I spend lunchtime with my baby and usually take her for a walk. Depending on how I’m feeling, we may do a short loop, walk to the park, take a longer stroll to look at leaves, or simply play outside. It’s important to get out every day and move my muscles to strengthen them.

At 5 p.m., I cut out of work to make sure my daughter and I both eat. I’m on medication that suppresses hunger, so I need to be cognizant of eating enough. I stay with my daughter through mealtime, bath time, reading, and then bedtime. Once she’s asleep, if there’s any work left from the day, I’ll sign back in to finish it. If not, I’ll read and try to sleep.

Because of my night blindness, I keep lights on in a few parts of the house so I can safely move around in the dark when needed. I also have alarms reminding me to take my morning, afternoon, and evening medications, as well as my weekly tirzepatide shots.

My day-to-day life is simple — boring, even. But that’s what it’s like to have an illness like Cushing’s. It affects everything I do and is a huge part of who I am, but it’s not always good or bad. Sometimes it simply is.

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.