Sunday, May 3, 2009

Mint Chocolate Chip

Trying to more accurately describe my heart palpitations. Yesterday: fierce, vicious, unrelenting, that sort of thing. I once again put off getting my hair cut, in hopes to rest up for a family gathering.

I love my family. But it's amazing how easily people equate "looking well" with "doing well." I'm not faulting my family specifically -- however frustrating, it is quite natural. Last night I excused myself about four times to go lie down, and, maybe I'm wrong, but I sensed surprise and even judgment in the room.

"She's well enough to come, but she can't sit for 20 minutes and have a conversation?" I imagine them thinking. "She looks fine to me."*

Doy. I may look about the same as a year ago, but lemme tell ya, I'm not the same. My body has a lot of trouble with basic processes that we take for granted. I don't function very well. Today I had a really good half-hour. I put away all my laundry and folded some socks - a big deal for me. To have 30 minutes where my symptoms are somewhat under control, this is a big deal.

It's really common for people to try to minimize my illness by saying, "Well everybody's got their good days and their bad days." Thanks for your optimism, really, but it's not like that.

My mom is emphatic. "No. She's severely limited, all day every day. She can't go to school. She can't drive. Her life has been turned upside-down! Every day is a bad day."

Might sound harsh, but it's true. POTS is my reality, and Level 3 / Grade 3 should be taken seriously. Not everyone can see or accept that. But a lot of you ARE very understanding, so thank you. :)

the ice cream truck just drove by!!

*Note: I can't read minds.


  1. POTS sucks!!

    I'm thinking of you sweetie!!

    Miss you!


  2. Dear Emma,

    I am not sure who you thought was "sitting in judgement", but I want to believe that we understand as much as we are able. You are absolutely right in asserting that we don't (and can't) understand, but that does not mean we are not empathetic. That doesn't mean that we don't try to understand. Please don't misinterpret our expressions of hope as us believing that you are doing better. We're not naive.

  3. Gah! Sorry for the delay in posting comments.

    I'm glad to see that JohnMark/Lee express empathy, just as I expected. Your family is here for you, even if sometimes it doesn't seem that way.