Living with discomfort for ages can make symptoms feel ‘normal’

“Are you OK?” my husband, Paul, asked, his voice laced with concern.

The question seemed out of the blue and took me off guard. After a long day of work, running errands, and wrangling kids, I’d finally settled into bed to engage in my favorite downtime activity of watching crime documentaries.

Admittedly, I’m the type of person who’s always on the go. There are running jokes among my family and friends about my inability to sit still or relax. And while I’ve gotten better in recent years, sometimes it’s odd to find me in a relaxed moment doing nothing.

Finally, I glanced over at my husband and saw his frown. I realized that his question wasn’t an empty one. He was genuinely concerned.

“Why are you asking?” I said.

“Because you’re breathing hard, and I can hear you wheezing,” he replied.

The next moment, he got up, retrieved my inhaler, and handed it to me.

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May 13, 2022 Columns by Danita LaShelle Jones

Ten Steps Forward, Eight Steps Back

What normal is supposed to feel like

Last year, after a series of telling incidents, I was diagnosed with mild asthma. When speaking with my pulmonologist, we discovered that I’d lived with asthma for all of my life and didn’t know it. It was only through sheer grace that I’d survived without any significant medical crises. However, it also meant that I’d lived with symptoms for so long that they felt normal to me.

Even after receiving treatment for the first time and feeling what normal was supposed to feel like, it was easy for me to slip back into what it’d felt like for more than 40 years. Truthfully, I still struggle with recognizing when I’m not breathing well, because it feels familiar.

When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), it was a little tricky not to be frustrated when she would ignore symptoms, which would lead to a severe flare and land us at the hospital.

We had everything we needed at home to manage her symptoms. We never missed a dose of her preventive medication, and I’d all but mastered administering her emergency medication. Yet more often than not, especially a year or two after her diagnosis, some of her worst flares would still occur.

One day, after one of my extensive research binges, I came across the definition of a prodrome. The more I read about it, the more I recalled Ladybug complaining about her hands “falling asleep” or her face “tingling.” These sensations had been a part of her life since she was 3 years old. She was so used to them that she didn’t know anything was wrong.

Armed with this information, I sat down with Ladybug and we talked our way through the clues her body gives her, which are tiny alarms warning her that a flare is coming. I explained that when she felt a prodrome, she needed to tell me right away. After our conversation, she mastered staying on top of her physical symptoms.

I’m kidding.

Ladybug still struggles to recognize her prodromes. Why? Because, like me and my asthma, she’s experienced the symptoms longer than the solution to them.

Caregivers should remember that newly diagnosed, chronically ill patients may still struggle to recognize when they feel bad or are in medical trouble. It’s essential to have ongoing conversations with them and their healthcare professionals so that they can have a more positive experience as they continue their journey.

Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.