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