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Kyli Posting!

So, the other day I was feeling very sick and very overwhelmed. In the last year I’ve gotten better at pushing through days like that – distracting myself from how bad I feel and moving along.

On this day though I just couldn’t do that. I felt so weighed down with fatigue and stress. I was weaker than I’ve been in a long time and on top of that, nauseous and unable to eat much. (That’s a bad combination of symptoms!)

I decided I would have to do something that I haven’t done in over a year.

I’d have to find my “emergency notebook”, go outside, sit in my backyard (which I used to call my “oasis”!), take a few deep breaths, and focus on nothing else, but the words on the pages.

My emergency notebook is something I created about four and a half years ago in the beginning of my POTS journey. I honestly don’t think I’d have survived without it. I’ve used it as a source of comfort and reassurance time and time again.As my symptoms and life have changed, I’ve edited the words in the notebook, but the underlying message has always been this:

“Everything is going to be okay.”

“This too shall pass.”

“You don’t have to worry about doing anything or being anywhere right now.”

“Just breathe.”

On one of the pages is a “ticket to do nothing” that I drew. Just a big rectangle that says in the middle:

“TICKET TO DO NOTHING”

And then underneath that, a list of pots-friendly, comforting things I can do for myself on a day like that.

Things like watching my favorite comedy shows in bed or if I’m up to it, a warm shower and some aromatherapy (I love to turn my bathroom into a spa with candles and all of my favorite products). A good book, my favorite snack. Or depending on how I’m feeling, spending some time with a family member or friend just watching movies or resting together (that friend is usually my mom!). Anything that makes me feel good, basically!

I give myself permission not to worry about anything; health-related or life-related. Not to put pressure on myself to get better for other people (like if I have plans that I don’t know if I’ll be well enough to attend) and to just RELAX. To do nothing at all.

I also have a page in my notebook that is there for me when I’m having an episode. Fortunately I haven’t had to read it in awhile, but it’s been such a help to me in times when my blood pressure is extremely low, my heart is racing, and I can’t think straight. It says something like:

“Kyli,

Everything is going to be okay. This is just an episode and it will pass. You do not always feel this way. You’ve had this happen before and you always get through it. Just relax. Drink some water, eat some salt, and prop up your legs.

Call someone and talk with them.

Deeeeep breath! You will get through this! I promise.

-Written by Kyli, on a much better day!”

I know it may sound silly that I’m writing letters to myself like that, but the truth is when you’re dealing with chronic illness you quickly learn that you HAVE to be your own best friend.

For years I wished that other people would find the right words to comfort me and make me feel better and then, suddenly, four years ago I realized the person who was most capable of making me feel better was ME!

No one has a better idea of what makes you feel good than yourself and when you’re chronically sick, I think it’s vital that we hold our own hand through the process and be good to ourselves. Often we feel like we have no one on our side – our doctors, our family, our friends, society in general – but that’s okay if we have ourselves.

(& of course, we have each other!)

Anyway, I thought I would share that with you and hopefully inspire some of you to make your own “emergency notebook”. Maybe a better name for it would be a “comfort notebook” or something like that. 🙂

I’m actually going to be adding to mine this week. I’m going to fill two pages with pictures that make me smile and feel relaxed – the countryside, mountains, a sunset, dragonflies. Maybe even some photos of my closest friends.

Does anyone have any other ideas? 🙂

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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?

Kyli Posting!

This is in reply to Laura’s post about people not understanding the struggles that we go through as chronically ill individuals.

This is a topic that has been on my heart for about five years now – from the beginning of my journey with POTS. It’s also something I’m constantly talking about with my POTS friends. It seems no matter how many times we discuss it, we can’t quite figure out why people treat us the way that they do. I see it as one of the biggest mysteries of my life. For a long time it hurt me terribly and to this day sometimes it really gets to me, but I’m learning more and more each day that it’s a wonderful thing that we don’t understand this type of behavior.

I don’t want to understand why people don’t have empathy for us. Why they treat us the way they do. Why people drop us when we’re at our lowest points. Why people blame us for something we cannot control.

I don’t want to understand it, because I know that the reason I don’t understand it is because I’m a compassionate person with a big heart. I’m noticing that so many POTS patients & chronically ill people have the most beautiful hearts in the world. We know what it’s like to struggle, to feel pain, and because of that… we’re better people. So let’s no waste our time even trying to understand where these other people are coming from. We never will. We’re not like them. And THAT is a good thing.

I’m not saying all of our family members and friends are evil, terrible people. I’m not saying they’re even to blame for their own behavior. I’m just saying that I would much rather be sick and kind-hearted than healthy and unable to empathize with people who are suffering.

Everything will be okay, Laura! You are beautiful inside & out!

HUGS, Kyli

Laura Posting- on a spree today- even after I was hiding under my covers earlier all snotty and crying due to being upset by both my brain fog (frusrating and frightening) and someone else’s reaction to it (blaming and shaming me despite the fact I can’t help it, thus making me feel even worse)!

Despite getting upset at times due to symptoms or other people’s ignorance and harsh behaviour (I’m doing okay now- sometimes you just need to have a good cry!) I am a positive person who is determined to look on the bright side and make the very best of things. So I didn’t want to leave the blog updated on a sad/angry/frustrated note- so to uplift things again, I want to share this really beautiful and quite frankly amazing video made by my friend Kyli, who is just awesome at making videos that are visually beautiful and touch the emotion in those of us who have suffered, whilst at the same time giving HOPE.

Thank you so much Kyli for all that you do, have done, and will continue to do! If it wasn’t for this illness I wouldn’t even know you, so that’s something to put in the plus column for POTS! xx