Enter my friend Kim … she’s the mom of a busy preschooler, wife to a firefighter (who is also in school) and she has full-time job. If that weren’t enough, she’s also got something she didn’t plan on … a full-time disease. On the outside, she seems pretty typical of many moms, but Kim’s disease prevents her from driving most of the the time, makes her feel queasy and nauseous if she’s out shopping too long and prevents her from standing for any length of time.
She doesn’t sweat. I’m not talking about not sweating the small stuff, she doesn’t sweat at all. This may sound like a blessing, but it actually causes more harm than good.
She posts things like this on Facebook:
- “ “
- “May or may not have the flu. Hard to diagnose what’s going on when my body doesn’t run a fever anymore.”
There have been times when she was sitting on a stool in the kitchen, her husband at work, trying to make dinner for herself and her son. She was feeling like she was going to pass out and had to place a fan, blowing hard, right on her face. All this just to make dinner. Kim has POTS (Postural orthostatic tachycardia syndrome), defined here (wikipedia has the easiest description to understand)…
Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia, more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.
Symptoms present in various degrees of severity depending on the patient. POTS can be severely debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.
So, I thought I’d ask Kim a few questions about her disease and how she manages to continue to be a working mom through it all. After reading this, I think the rest of us will have a greater appreciation for all the things that we have to do.
What is the hardest part about being a working mom and having POTS?
Kim: With POTS, you don’t know day-to-day or even hour-to-hour how you are going to feel. My entire day is made up of improvising plans based on what my body is doing. Learning to have to ask for help has been the most difficult part of all of this for me. I’ve always been a private person and POTS has forced me to live my life as an open book. I can’t do everything on my own anymore. I have to ask for help. And I have to say no. Also, adding the phrase “I can’t” to my vocabulary has been pretty crushing. But there are times now where I just can’t do things. We have been so blessed with amazing friends and family who have turned themselves inside out to help with meals, driving, and compassion. I honestly don’t know how we would get through this without that love and support.
How did you find a job that was so accommodating to your needs for flexibility?
Kim: I am very fortunate to work for a company that allows work/life balance. I always put in at least a full week of work every week, but there are some days where I work from home or have to work later at night, but I always get my work done. I was already working at my current job when I started getting sick, and the true support and compassion I get from my manager and my co-workers is humbling.
What advice do you have for moms who feel overwhelmed with all of their responsibilities?
Kim: Before I had POTS, I was so hard on myself. I had to be a perfect mom, wife and employee. When I look back on that time now, I see that while I was “perfect” to everyone else, I was short changing myself in the process. If I were to give any advice it’s this: No one is perfect. No one has all the answers. Even your friends that you look at and envy because their kids are seemingly always perfectly behaved, bathed, eating home cooked meals every day and using the potty before they get their first tooth. No one is that perfect. It’s just not real. So stop trying to compare yourself to others and just remember to appreciate your family and yourself for who you truly are. Once I stopped trying to be perfect or comparing myself to others, a huge weight had been lifted off my shoulder. I’m a fantastic mom to my son and I’m constantly trying to be a better wife to my husband. I do a pretty good job balancing my life right now, but there are times that I fail. And it’s ok. I always have love in my heart for my family, and that goes a longer way than people realize.
What suggestions do you have for busy moms on how to stay organized?
Kim: My husband and I have had to get pretty creative in keeping everything on track. He is a firefighter/EMT and is currently in paramedic school, so our schedule is quite interesting. We have a yearly calendar that we make two copies of and carry everywhere with us. On that calendar are key dates (his work schedule, his school schedule, my doctor’s appointments, etc.). We’ll circle dates that we think we’ll need ride assistance with and post those dates on a website that is designed specifically for helping people. (lotsaHelpingHands.com). We also have a large dry-erase board in our kitchen with our weekly schedule, meal calendar (I’m trying to learn the fine art of making in advance and freezing), and grocery list. And we just have to communicate constantly to make sure nothing falls through the cracks.
What is one thing you hope you son learns from you having this disease?
Kim: If I’ve taught Gavin anything this year through example it’s that it’s OK to be sick. It’s OK to hurt and cry. But it’s also OK to laugh and smile and enjoy the small things in life. There have been times this year where I have to lay on the floor because my heart rate isn’t behaving or the room is spinning. So Gavin and I have had to get creative in play time. On those days, instead of playing in blanket forts or other active games, we do quiet activities like puzzles, painting or reading. And we have SO much fun either way. I’d like to think Gavin has learned to get creative and find the fun in any situation. I think he’s also learned compassion and caring at such a young age.
What are your hopes and dreams for your future?
Kim: My long term goal is to, of course, one day be POTS-free and be able to run around outside with my son, have a nice bubble bath with a glass of wine, and just be able to live life without constantly looking over my shoulder. I’d also love for doctors to have more of an understanding for dysautonomia/POTS. I have been bounced around so many doctors who don’t understand and don’t seem to care because they can’t cure it.
Because I am dealing with a chronic illness, I try not to get disappointment if my goals don’t happen. Instead, I set daily hopes and dreams now and I make sure to recognize myself when they happen. Some days just getting out of bed is the only success I have, but I remind myself that getting out of bed each day means I’m taking control of POTS and not the other way around. It’s my life to live.
Photo courtesy of Kim. Kim and her son, Gavin, raising awareness about POTS by wearing pots on their heads!