Sidelined: Being Sick When You Have SMA

Being sick tends to take a lot out of people with SMA, and the healing process is often slow. A few days after returning from a family vacation this year, I started to feel ill. My heart rate was quickly rising and I had a slight fever. At first, I thought my body was just worn out from the trip and only needed a few days of rest.

Evening came, and I was suddenly hit with a wave of extreme exhaustion. This passed fairly quickly and all seemed well again. It looked like my initial suspicion that I was worn out was correct.

Unfortunately, it didn’t last. I woke up early that night in a cold sweat with awful stomach pain. I felt like my body had been set on fire. Despite being drenched in sweat, my skin was freezing to the touch. I spent the rest of the night tossing and turning in an attempt to relieve the pressure building in my stomach and trying to persuade my body to accept fluids. I don’t think my parents or I got much sleep that night.

By morning, my stomach pain had finally started to fade and we were able to restart my feeding pump. The morning also brought a new symptom: increased congestion and difficulty breathing. I had to spend most of the day on my ventilator to give my lungs some extra support.

It didn’t take long for my doctors to determine that the infection was probably viral. There was a chance that I had gotten food poisoning as well. Antibiotics wouldn’t help. We would just have to ride it out.

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I spent the next couple of days on my vent, alternating between sleeping and watching movies. I didn’t have the strength or desire to eat, so all my nutrition came through my feeding tube. My loyal dog and cat curled up on my bed frequently in their best effort to make me feel better.

Eventually, my appetite returned and my wonderful brother went to the store to get sherbet and Sprite so that I could make a float. This is one of my favorite treats and the only thing that sounded good at the time.

A few days passed before I was able to breathe easily without my vent and my fever started to come down. After what felt like a ridiculously long time, I was getting better. My body still needed time to fully recover, but the worst of the virus had passed.

For me, one of the hardest parts of being sick is staying home for an extended period of time. I’m a naturally social person who loves to get out and do things. That’s why I was thrilled when I was finally well enough for a short outing! After I’d spent nine days at home rebuilding my energy reserves, my mom and I decided to venture out into the world to have dinner at Culver’s. Being able to go out for just a little while was exactly what I needed.

It took a few weeks to fully regain my energy and for my cough to completely subside. It certainly was not how I would have chosen to spend my time, but I’m grateful that, in these less-than-ideal circumstances, I had my loving family by my side, as well as my team of doctors and home care nurses and my ever-faithful furry friends.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.