The many symptoms of POTS make my everyday life difficult
How a columnist with aHUS deals with this frustrating comorbidity
My eyes scanned the makeshift ramp that volunteers had made from a section of collapsed roof. I was hesitant to climb it to get into the trailer, which had a floor more than 4 feet above the ground. “At least the shingles will give my shoes a good grip,” I thought. I let out a big sigh and began my slow trek up the ramp. Once at the top, I stuck out my arms to steady myself and placed my right foot firmly on the floor inside.
Crash!
The soft wood splintered, and my foot and ankle fell through the floor. I gasped and stabilized myself so I wouldn’t fall any farther, but I felt dizzy and a little lightheaded. Pain shot through my foot and ankle like lightning.
“I’m OK!” I yelled as everyone rushed to my aid. But I wasn’t. My ankle hurt, and now, more than three weeks later, my foot still isn’t healed.
I’ve struggled with balance and stability since I nearly died four years ago from the rare atypical hemolytic uremic syndrome (aHUS). In addition, I have postural orthostatic tachycardia syndrome (POTS), which is likely secondary to either aHUS or lupus. POTS is a disorder that causes my heart to beat faster when I stand, making me unsure on my feet, dizzy, and lightheaded. My legs will get weaker, and I’ll have a ringing in my ears and feel off balance.
I just didn’t have time for these issues on that day.
Difficult mission, difficult health
My family and I were digging through what was left of my parents’ home in Swannanoa, North Carolina. They went missing in the floods caused by Hurricane Helene on Sept. 27. At this point, they’d been missing for 16 days, and we’d come back to keep searching for them (we later discovered they’d died) and salvage what we could from their ripped-open home. The last time we came we’d scaled a bunch of mattresses to access the home, because the floods had ripped off the porches and washed them away.
This search was a daunting task that I normally wouldn’t have signed up for. Physical activities that used to be easy for me have been much more difficult since my aHUS diagnosis in 2020. POTS causes myriad problems for me, and being emotional and upset can exacerbate those symptoms.
The first time we drove out there after the floods, the entire home was full of 1 to 2 feet of packed mud. The right side of the trailer had been ripped open by a semitruck that had crashed into it, so large amounts of mud and water filled the home, with the water rising as high as 8 feet inside.
This time, a volunteer group called 828 Search and Rescue had come before we arrived and shoveled a pathway through the mud so it’d be easier for us to work inside. But it was important that I kept my balance because the home was still dangerous.
Once I got my ankle loose, I had to sit for a few minutes and drink some cool water. I could feel my blood pressure rising and my heart rate increasing. Dizziness washed over me like a wave. Stupid POTS, I thought. Once I rested for a few minutes I was able to stand slowly. I then remained still for a few moments to let my balance catch up so I could continue searching the house.
POTS has been one of my most daunting and sneaky comorbidities. It can strike at any time, causing poor balance, high blood pressure, brain fog, short-term memory loss, temperature dysregulation, and more than two dozen other symptoms.
It’s important for me to take my time standing up, climbing things, and even walking, and to stop and take breaks when I begin to feel dizzy. There’s no cure for POTS, so I have to be cognizant of its effects at all times.
Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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