Most of the time I write about our day to day struggles with having a chronic illness. I do this here because I try to avoid putting to much of my personal life on my facebook page. However, after this weekend I felt that it might be important to share. Nicole has POTS (I know big surprise right??!!) OK all sarcasm aside, POTS isn’t just an acronym for a disease that noone has ever heard of, it is our day to day reality. Some days that reality is like everyone else’s however this weekend it became our nightmare.
This weekend we were scheduled to travel to Wisconsin Dells for our annual winter student conference. Tony and I take Friday and Monday off and travel to the Kalahari resort where we work for 3 days straight to ensure 1350 students have the most amazing experience possible. For a kid with a chronic illness this can either be really fun or really bad.
Before we go further let’s remind ourselves what POTS is: (From WebMD)
POTS is a fast heart rate (tachycardia) that starts after you stand up. This can suddenly happen as long as 10 minutes after you stand. With POTS, the body does not control blood pressure or heart rate as it should after you stand up. So for a brief time, you may not get enough blood to your brain. This can make you feel dizzy and lightheaded. You might faint. Sitting or lying down helps you feel better. For many people with POTS, fatigue and other symptoms may make it hard to keep up with daily living.
Read the last 2 lines again! (OK now again) POTS doesn’t make Nic tired, it makes her unable to function. She’s not just tired, or lazy, she is incapable of getting out of bed. Sunday, when her friends were playing dodgeball, swimming and riding rides she was in bed. Not sleeping, but almost unconscious. Her heart rate and blood pressure were very low, making even sitting up impossible.
I am not writing this to make you feel bad for her or for us, but to explain when we say this is bad, we mean BAD not she’s just a little tired. Take your most tired moment and times it times 1000 and then add 1million and you might get close to what she feels.
Having POTS means that you can do 1 day but not 2, that you can do 1 thing but no more. It means having to balance everything that you do, and even then it means missing out. She didn’t get to attend any of the conference on day 2 because she went day 1.
I know what you are thinking, not fair! I agree!! However, I don’t write this because I want you to feel bad for us, but simply to provide an understanding of what she deals with and to let you know that it’s OK to ask how she’s feeling. We appreciate that, it’s also OK to admit that you don’t understand, that this disease doesn’t make sense (it doesn’t to us either) and that it’s hard to fathom a 13yo kid who will sleep for 23 hours in 1 day.
If you are curious, please ask questions, do research and get information! If you know someone dealing with this crazy disease, let me know we love to expand our circles!!