Handling the reality of respiratory infections while living with SMA
If you’ve never shivered at the sound of someone coughing, chances are you’ve never experienced the weight of a respiratory infection. For someone living with SMA, that’s not usually the case. Getting these infections can be dangerous and life-threatening for us, even if they’re simply common colds. In fact, I’ve had many common colds that have gotten me admitted to an intensive care unit. I’ve also been intubated for them.
At the very least, every respiratory infection involves an intense regimen of care, whether it’s at home or in the hospital. For me, that means around-the-clock nebulizer treatments with albuterol, chest physical therapy, and extra time spent on a BiPAP to open my lungs.
Because I’m too weak to cough up mucus on my own, I need extra support in loosening my secretions. These added measures allow me to have a productive cough and breathe easier.
As you may imagine, a lifetime of illnesses with SMA has taught me to become vigilant and proactive. My friends, family, and caregivers know not to come near me if they have any type of illness. I’ve been programmed to look at people’s noses when I’m out in public. If they’re red, chances are that person is sick. If I hear someone cough, I become, as the saying goes, a deer in headlights: I freeze, do a quick scan of my surroundings, and try to locate who’s coughing. Then I do my best to avoid that person.
Most decisions I make involve what’s best for my health. That being said, the process has become so automatic for me that I often don’t realize I’m doing it. I don’t live in fear or fixate on doing everything in my power to stay healthy. Getting sick eventually is inevitable. So I stick to my routines and know that when the illness does arrive, I did all I could for my body.
When the danger is at home
Last month, however, I was met with a new challenge when both my parents had nasty respiratory infections. Worse than my being in a household with two sick people, they’re also my main caregivers. Their colds only overlapped for about a week, but for six consecutive weeks, there was an illness lingering in the air I was breathing.
Life was certainly stressful during that period. Both parents wore masks and gloves. With wet coughs, they’d change into clothes that were germ-free when handling me. I’d ask for less help and sacrifice my normal daily routine to avoid as much contact as possible. My mother would disinfect everything daily. And we’d all do our best to avoid contact with one another.
I was living in my own personal hell.
I’m not sure how, but I skillfully avoided their viruses. Somehow, I came out of it unscathed. Despite the difficulties, this experience reinforced the importance of adaptability and resilience. It showcased the lengths my family and I were willing to go to maintain my health. And it reinforced the strength that can be found in the face of adversity.
Note: SMA News Today 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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