You are currently browsing the tag archive for the ‘pots’ tag.

Gwen Posting

When I was first diagnosed with Dysautonomia my world came crashing down around me. At the time, I was in marching band and loving it! I was planning to start ballet class when band season was finished (I had been a dancer since the age of 3) because both band and dance were too much. Marching season only had a few weeks left in it when I first passed out and was diagnosed and somehow, someway I pushed my way through and finished my sophomore season of marching band in high school. My plan however of starting ballet back up didn’t happen.

My not being able to start ballet up again caused me to have this really crazy and new outlook on life because I was now sick. I began looking at my life as being, “new.” I also began listing in my head everything that I couldn’t do anymore because of POTS.

Can’t Do List
can’t dance
can’t drive a vehicle
can’t do marching band
can’t physically attend school
can’t play sports
can’t go shopping
can’t go to parties
can’t date

The list went on and on…

A lot of the “I cant’s” I hadn’t even done before I got sick! For me it was simply just the fact that I was 16 years old and I was sick, sick with something that was rare no less. My life was new and it stank!

What’s wrong with the picture here? Is your life REALLY “new” when you are diagnosed with an illness?

I believe that yes there will be things that you won’t be able to do because of your illness. But, does that mean that you will always never be able to do that something? No, it does not. For instance, when I was first diagnosed with POTS, there was no way I could dance. However, five years since my diagnosis I can choreograph some small pieces.

The day you are diagnosed, do you say to yourself, “Well I am now sick, so I am going to forget all of my hobbies, favorite things to do, and everything that makes me, me.”

No, that would be completely silly! Of course you will find new hobbies and new favorite things to do. However, you do that throughout your entire life, not just when you are diagnosed with an chronic illness. You will find things about yourself that you never knew before. For example, I never knew just how strong and brave I can be. I never knew what it would take of me to not take things for granted in life.

What I am trying to say is, is that having POTS doesn’t mean you are a completely new person. You will discover things about yourself that you don’t like and you will change them. There will also be some new hobbies and favorite things to do to keep yourself busy since your days might be a little more free then they used to be. Having POTS, or any form of Dysautonomia or chronic illness doesn’t change you completely and that is what is important for you to remember at the end of the day!

Remember: You may have Dysautonomia, but the Dysautonomia doesn’t have you!

Kyli Posting.

Here is something I said to Liz the other day on the phone.
(& she said, “Quick! Write that down! You put into words what I’ve been trying to say for forever!”)

“We’re put in a situation where we can’t win either way.

If we express how sick we feel, people don’t want to be around us and they think that we’re negative.

But if we try to push through it and pretend that we’re well… then when we do finally reach a point where we can’t keep going & putting on an act (when our health worsens), people have even less of an understanding of what we’re going through. They expect more from us.. and then ultimately, we end up crashing because we tried to do the impossible.”

IS THAT FRUSTRATING OR WHAT?!

It’s like no matter what we do, we can’t please anybody!

And what about when you’re really trying to get to know somebody?
Trying to let them get to know you?
(This is particularly frustrating when it comes to dating, but it’s tough even when it comes to friendships.)

How do you possibly do that? I’m always so torn about it.

On one hand, I am me. Kyli.

I love to laugh. I’m creative. I’m a dreamer. I have a big heart. I like photography and thrift store shopping. Making youtube videos. Singing in the shower. Being spontaneous. Staying up late. Long conversations. Picnics. Movies.

On the other hand, I have POTS.

I’m not always in the mood to laugh. Sometimes I’m too tired to be creative. I’m not always well enough to shop. Sometimes I get lightheaded in the shower and need to sit down.

Most of the time I cannot be spontaneous. Or stay up late. Without paying the consequences physically.

Sometimes I’m even too tired for long conversations. If we go on a picnic, the sun might be too hot for me. I might get woozy. I might need to go inside to cool down. As for movies, sometimes they’re too loud and trigger my tachycardia. The bright lights don’t help either.

The problem I keep encountering with POTS is that when new people meet me, they mistake my symptoms and limitations for being my own preferences and decisions!

When somebody doesn’t understand the effect POTS has on me and my life, it’s impossible for them to really get to know me.

Kyli-POTS=Kyli

It’s impossible for them to get to know the real me, because I’m often overshadowed by things I cannot control – POTS symptoms that make my decisions for me.

It really is like being a prisoner in your own body sometimes. I may as well have an abusive husband or an overbearing parent – somebody who is controlling what I do, where I go, and who I am. It’s no different from that really, except it’s even worse-

I can’t escape!

I’m stuck in a body that is dizzy and weak. That has a low tolerance for so many things – standing, physical exertion, sounds, lights, heat, cold, etc.

And because of that… for five years now I’ve felt like there are very few people who actually know the real me. The real me is so buried, so lost sometimes. Under the symptoms. And so few people are willing to take the time to learn about both me and the condition that ISN’T me. So that they can see who I really am…

That’s why, so many times, I’ve tried to pretend POTS doesn’t exist in my life. I’ve become an actress. I’ve gone shopping with friends, pale-faced and exhausted, on the verge of passing out, pretending I was okay.

I’ve gone to family parties with a smile on my face, even though inside I was sick and feeling so alone because God forbid I mention how I’m feeling.

I once drove in a Convertible on a date even though the wind made me dizzier and the sun made me woozier … just because I didn’t want to say the truth. Because I wanted to seem normal.

But eventually…no matter how good our acting skills are, we eventually can’t compete with our symptoms. Eventually, whoever it is we’re acting in front of, sees our true state. Eventually we get to a point where we can’t keep going – maybe we become so weak, we finally need to admit we need to rest. Maybe we even faint in front of them.

Something happens and the secret is out. All of that acting for nothing.

And then what?

A lot of the time, people are scared off anyway.

Or, because you were SUCH a good actor before, they think you’re actng now. The “healthy act” is real. You being sick – that’s fake. An act. Surely you’re not sick – you went shopping, you played golf, you were laughing at the party. You’re not sick. You’re exxagerating.

When that happens I become so angry with myself for putting on the “healthy-act”. “Why did I do that!?” I ask myself.

And then I realize that I did it because I, like everyone else in the world, want friends and people who care about me. I wanted somebody to talk to, have fun with, date, laugh with.

Yes, I could’ve told them upfront. Sat around and educated them on POTS.

But remember-

The sad truth is that often scares people away.

And God forbid we seem like complainers. Or negative people. Or hypochondriacs.

Or even worse – like a person who’s lost their identity due to an illness.

The truth is …

I’m sure there are wonderful, healthy people in this world who will take the time to get to know a person and their illness. They’re out there. They really are. Few & far between, but they do exist.

And I’ve honestly gotten to a point now where I really do believe I’m worth getting to know. POTS or not.

We’ve grown so much because of what we’ve been through.
Through our suffering, we’ve become stronger people.
Because we’re so fragile, we’re able to look at life in such a unique way.
We love with all of our hearts, because we know something that so many people don’t realize until they’re at the ends of their lives-

Life is fragile and precious! And not to be taken for granted.

& because of all of those things, we are worth getting to know. No matter how many obstacles we face or how many things are “abnormal” about us.

I think anybody who takes the time to know us –

….They’re LUCKY! ….

🙂 Don’t you?

Laura Posting- An absolutely BRILLIANT photo taken by a fellow potsy friend, Angela Perry. Posted here with her permission with, to quote “AWARENESS AWARENESS AWARENESS!” 🙂

Oh, making this post brought a smile to my sad face today. When the picture was uploading, wordpress said ‘crunching’. It made me think of wordpress crunching up all those pills, LOL!

A small smile on a sad day is a good thing. 🙂