Words From a POTSie- Pt. 1

Friday, November 29, 2013

Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.” -S. Kelley Harrell

Get a chronic illness. Four words you probably didn't have on your to-do list for 2013... I know I didn't. In fact, there was nothing on there about illnesses. There were things like "crochet a blanket" or "buy a laptop". I even had "celebrate each major Jewish holiday" on there! But I certainly didn't have "get a chronic illness" on the list. No way!

Chronic illnesses are not something you plan for. Most parents don't think about chronic illnesses when thinking about their baby's future. Most kids, when asked what they want to be when they grow up, won't say, "I want to be sick forever!" When the child-version of you thought about their future, they probably didn't imagine it in a constant state of pain and suffering caused by a disease most people have never heard of and cannot understand.

People like to imagine the best for themselves and those they love, and typically, a chronic illness just doesn't feel like "the best."

I should know.

I was recently diagnosed with something called POTS- Postural Orthostatic Tachycardia Syndrome. (Try saying that five times fast...) Most people have never heard of it. At one point in time, I was one of those people.

POTS is a form of Dysautonomia, or autonomic dysfunction. (AKA- Your autonomic system is messed up, man.) If you want more information (as in, a lot more information) click HERE.

There are many of different forms of Dysautonomia and each is a little different, but for me and other people with POTS, when we stand up, our heart-rate and blood-pressure don't adjust correctly to the change in posture. This means our heart speeds up much faster than it needs to. My resting heart-rate was somewhere in the 70-80 bpm (which is normal), and my standing heart-rate got all the way up to at least 120, though I'm thinking my highest may have been 136. (Could be exaggerating it a bit, but I don't think so.)

Your autonomic system affects a whole lot of stuff, so the symptoms of POTS may seem pretty unrelated. You wouldn't normally expect that your severe stomach pain would be at all connected to feeling faint upon standing, would you? (If so, perhaps you should go into the medical field. (Or perhaps you're already in the medical field...? In which case, I wish we'd seen you first.)) Brain fog? Cold hands and feet? Fatigue? Heat intolerance? Basically, all of you feels pretty crappy. Yes- I just said crappy, so you know it's not good.

It's been a long journey for me to a diagnosis. (Perhaps not as long as some, but it was certainly long.) I endured numerous doctor's visits, all number of embarrassing tests, a month long stint with a heart monitor, frustrating doctors, frustrating circumstances, and a countless number of days that just wouldn't seem to end.

Even now that I have a label, the journey isn't over. So much of the treatment for POTS involves trial and error. Not every treatment works the first time, and some treatments that worked just fine for Sally-Sue simply won't work for me. We haven't found my "perfect balance" quite yet, though I have faith that this new adjustment will be what I need.

Now, I don't say any of this as a plea for sympathy, although it might seem like it. To be honest, sympathy is one of the last things I want. Alright, there are times when I want a little sympathy. (Don't we all?) Most of the time, though, I don't want people to feel sorry for me. I get that a lot, and it's sort of gotten old. What I want most is for people to understand.

I don't mean for people to understand how POTS works. I don't mean for them to have top knowledge all of the technical terms and up-to-date medical jargon. I don't mean for you to know. I mean for you to understand.

I want people to understand that it's hard to remember what most people's "normal" feels like because this has been my "normal" for so long. (Did you know that fainting "only once or twice a week" isn't normal?) I want people to understand how hard it is for me to tell them how I'm feeling. I want them to understand that no matter how many times I remind myself that it's not my fault, I still feel guilty over being sick. I want people to understand what I live with every day. Even the good ones. I want people to understand how hard it is to wake up each day and pretend- for the sake of the sanity of everyone around me- that I'm alright. I want people to understand that there's always more then what they see. I want them to understand how hard this is for me...

Because it is so very hard.

It might not be cancer. It might not be starvation or malnutrition. It might not be a death sentence. It might not be extreme poverty or homelessness. It might not be divorce. It might not be Cystic Fibrosis, or MS, or Crohn's Disease, or any number of other terrible illnesses.

But this is hard.

And through the hardest days, this is what I have learned to cling to- Jesus understands. Jesus knows about suffering and pain. He knows about what it means to hurt. He knows how it feels to be alone. And He has wept. When I remember all that He has gone through for me, and that He understands even when no one else does, I have peace.

Because it is then that I remember... I am not alone.

So whatever you're going through right now, there are a few things I want you to know. You've probably heard them before, but sometimes it just helps to be reminded again.

First off, you do not have to do this on your own. You are not meant to do it on your own. No man was made to be island, and that includes you. Talk to someone. They may not always understand, but there are always people who will listen. You just need to find them. Don't be afraid to be vulnerable. We have this tendency to think we need to be strong all of the time, but the truth is that people may never know you're suffering if you never tell them.

And if all else fails, remember this- when you feel like you're carrying the weight of the world on your shoulders, just shrug. It was never yours to carry...

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  1. Waiting for part two... Love you and hoping our visit to the doc on Tuesday helps you find some relief, sweet girl.