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I’m at the Owl Center with Leadership Lincoln trying to keep my vision clear. We’re doing an activity outside in the maze. It’s so hot and humid, I am already struggling with POTS before we even start the game. Afterwards, I drink the rest of the water I have and sit down with one of my teammates. Everything looks fuzzy, I am feeling the extreme fatigue and hoping I don’t faint here around all these people I just met. No salt with me. No Liquid IV. No pickle juice. I was not prepared for this weather.
Postural Orthostatic Tachycardia Syndrome
Before the group headed over to the maze, my co-worker asked me if I was feeling ok, mentioning that her daughter also has POTS. We talked about how me & her daughter were active before we got diagnosed. Next thing is your doctor telling you not to even get on a bike. I felt comfort in knowing someone in Leadership Lincoln knew my condition, who would know why I passed out.
Brain fog, heat intolerance, extreme fatigue
A few hours later a group of us are doing an activity that I immediately notice I won’t be able to do. The awkwardness of avoiding being in the first group to go & not making eye contact with our instructor as she asks if everyone wants to do the activity. When it’s time for the second group I have to say out loud what I dread to: I can’t. Everyone just nods and continues on with their day. Now I am worried that someone is thinking, “She looks healthy, why won’t she participate?” The dreaded thought when living with a chronic illness. It’s a weird kind of shame. I make sure when we get to the next activity that I am one of the first ones to participate. Did I need be on a huge piece of wood trying to balance it while I was fighting my symptoms? No, but I was being stubborn. I don’t want to be left out because of my syndrome. It’s a difficult thing to accept, all the time.
Numbness or tingling in limbs, blood pressure fluctuations
A few weeks later, celebrating our 120 years here at the Main Office, I am standing for too long (more than 2 or 3 minutes) and start to feel that annoyingly persistent fatigue. The majority of people are standing, there are few chairs out, and I don’t want to take a chair someone else might need. Later I am helping a co-worker take down the balloons outside. It’s hot and humid, my body is already aggravated at me for not sitting down when I was fatigued. We are popping balloons, I start bending over to pick them up off the ground & admit defeat. I look at my co-worker, someone who knows about my condition, and tell her I can’t bend over again. The light headedness, the exhaustion, I am starting to feel like I could pass out. She tells me to go get someone else to help us. I feel lighter in the fact that someone knows I have POTS and doesn’t see me as lazy.
Exercise intolerance, blood pooling, palpitations
Like most things there is always comfort, when in a work/social setting, knowing there is someone around who understands. A few years ago, a family friend reached out to me and asked me to talk about the condition with them. Their teenage daughter had just got diagnosed, and they were still in shock about the complete 180: a regularly active kid now bed ridden. Their daughter’s POTS was worse than mine but I talked with them about how I make it through a day. I didn’t give them a lot of hope. I could hear the dread in their voice.
Compression socks, salt, fluids
Once I get home that day, I am talking on the phone with my dad. He and my brother-in-law had been to two houses then some apartments to install cabinets. They left early in the morning and got back home around 5. I asked him if his body was tired and he replied with, “Not really. I was just really thirsty when I got back home and had two glasses of milk.” Then I told him about my day with the balloons and how I was exhausted after standing too long and bending over to pick up trash. My dad is retired, still running his cabinet business and can do more than I can do at 32. Mentally, this doesn’t feel good. Just something I have to live with.
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October is POTS Awareness Month. Postural Orthostatic Tachycardia Syndrome. “It is characterized by an abnormally large increase in heart rate upon sitting up or standing.” (Benarroch EE. December 2012.) It’s not contagious, can range from mild to severe. Most symptoms can be relieved by laying down & letting your blood flow return to normal. “Approximately 25% of POTS patients are disabled and unable to work.” (Blair P. Grubb, Circulation. 2008; 117: 2814-2817) In 2012, after many weeks of passing out from a weird pain in my legs, my parents took me to the emergency room. It took several months of cardiologist appointments to get diagnosed. EKG, stress test, tilt table test. One of the only medical treatments available for patients living with POTS is beta blockers or steroids. If you’re curious or know someone living with this condition but don’t know much about it, visit dysautonomiainternational.org
