Paying the price of attending events with Cushing’s disease

I smile the entire night, have a few sips of wine, and push myself. A long walk? You bet. A staircase? I can handle it. You want to eat at 9 p.m. and then go home in the dark? Sure. I try my best to appear normal. It’s not that I hate myself or my disability. I just don’t want it to define me all the time. Sometimes I want to be like everyone else.

But the truth is, I’m not the same as those around me. I have Cushing’s disease, and the constant hormone imbalances take a toll on my body. As much as I want to pretend for a night or two that I’m unaffected, it’s a lie. I pay for every choice.

The second I get home from a night out, my Cushing’s symptoms intensify. Straining my eyes to see in the dark has caused an enormous headache. I have to sit in a dark room with an ice pack on my head until I can see properly again. Even then, there’s still a dull pain.

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Afterward, I curl up in bed, a heating pad on my hips and an ice pack on my feet. I walked too far, and my body is angry at me. My hips burn, and my feet scream.

I’m thirsty, and after dealing with dehydration lately, those few glasses of wine hit me like a truck. I force down an entire glass of electrolytes and drag myself through the motions of getting ready for bed. I wash my face, and, if I’m able, force myself to shower. If I don’t, huge blemishes will appear overnight. But half the time, I get dizzy and need to lie down as soon as possible.

Every decision I make has an effect. Throughout the day, I’m constantly deciding if something is worth it. That sip of coffee might help me focus now, but it will make my insomnia worse. Sure, I can push myself at an event, but I might not be able to get up for several days.

I experience extreme fatigue after events and need time to recover. Sometimes that means extra sleep, but other times it requires more care. I need pain medication, an increase in my normal meds, or even a day or two off work.

I wish I could go through life without weighing everything. I repeatedly have to give up opportunities for the sake of my well-being.

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.