How Years 16-22 Changed my Life at 28

“What’s with all of the appreciation? Isn’t pain and illness miserable…aren’t you suffering every day and lonely in bed? Don’t you hate that the world is spinning without you?” Don’t get me wrong, I’ve had plenty of pity party time over the years. Plenty of my own misery that I’ve crawled into. I still do from time to time. But, I have more gratitude now that is helping me along more these days. Why? How?

I was living my life, being an over-achiever, free-spirit, planner, optimist, perfectionist, social butterfly, spontaneous young person (yes all of those things at once). And boom: gimpy girl, doctors are your new BFF’s, your plans are a joke, and spontaneity is only reserved for your malfunctioning body. Adult life had just begun. The pieces had just fallen into place when they shattered apart so suddenly. I had so much fear about the future. Between all of the doctors ensuring me what a dim future I would have added to the horror stories I would read online, plus my own excruciating pain- equaled a young person very ill equipped to emotionally handle the fallout.

In the beginning, when I happened upon my first story of a child going through the same thing I was, I couldn’t help but draw strength from it. Knowing a child was in so much terrible pain every day, and still going to school and trying to walk or play- had me reconsider my own desperation. In all the times I was so ready to give up, there were definitely moments I would look up stories of children with the same pain disorder and remind myself that they don’t even realize they can check out. They just have to be strong- so they are. Because I’m in the same fight, I should also be strong beside them. Maybe you think it’s perverse, but it helped me. It helps me.

[One note: Others’ suffering does not negate one’s own trials and battles in life. Hopefully though, it can help us gain better perspective. We still must face our own pain intimately. A million other people in pain does not lessen my own struggle or yours. I just want to clarify that is not what I’m saying.]

It wasn’t until more recently, a few years ago when a myriad of other conditions floated my way, including a nasty one called POTS that changed my thoughts even more-so…

Even though I personally became chronically ill at 22 and then bedbound at 28, it is very common for young women of 16 to get POTS, unfortunately. There are teen girls at home and in hospitals all over the world hardly able to stand or sit up wondering what kind of future they will have. These young women are my heroes. Not only have they been teaching me how to better manage my condition using food, technology, and lifestyle choices, they also teach me through their attitudes. They keep pushing, keep trying, and they never give up hope.

When my POTS began something clicked for me. Even though my POTS entered my life with so many other conditions and more pain, making me more debilitated than ever, I’ve felt less grief for all I’m missing out on in life. It opened my eyes to how much I had done from 16 to 22 when my first chronic illness set in. In those 6 years, I finished high school, worked several jobs, had been in love, traveled the entire country, I learned how to do so many things with my hands, I used my body to go on many exciting adventures, and made amazing memories with my friends. I found the love of my life, lived independently, got married, bought a house, started college, and got the opportunity to spend quality time with my family.

For a very long time, I looked back at my life and memories and thought it wasn’t enough. I couldn’t even look at a old pictures without the memories crushing my heart- so I didn’t. It was like losing a loved one; losing myself. But if I can appreciate from 16 to 22, then I can appreciate all of it. What about the children whose illness inhibits their freedoms in life from a very young age? It changes the way I look back. Now I can look back at my memories and pictures and say, “Wow, I’m so blessed! God really allowed me to do so much!” Instead of, “I wish life could be as good as it used to be.”

Being thankful changes everything. Focusing on gratitude takes work though. And I have to avoid that which spirals me into my darkness. If you are toward the beginning of your journey, I don’t believe that mourning the loss of your life is negative. It’s an appropriate response and grieving is a valuable part of the illness journey. It has just taken me a long time to get here, and I have required a great deal of grace to find my way. Blessings to you on your own path.

 

“And I said, This is my infirmity: but I will remember the years of the right hand of the most High. I will remember the works of the Lord: surely I will remember thy wonders of old. I will meditate also of all thy work, and talk of thy doings.” -Psalm 77:10-12

******

Thank you to Mitzi Sato-Wiuff at Aurora Wings on Etsy for allowing her very special original Skull Image to be featured here. Please go check out her shops linked below and purchase one of her awesome prints or instant downloads as a gift for the holidays!

www.aurorawings.com

www.etsy.com/shop/AuroraWings

*****

WordPress Blog Prompt: Salad Days. Looking Back.

Salad Days

Advertisements

About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 13 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Six years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 6 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on November 20, 2014, in Being Myself, For Wordpress, Gratitude, POTS/Dysautonomia and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 7 Comments.

  1. Another very inspiring post!! Thank you!!!

    Like

  2. Thank you for sharing your gift of grace with us. Your blog is a Blessing 🙂

    Like

  3. I am trying to think of something to say that doesn’t sound cheesy but also lets you know what a difference you are making. Thanks! Thank you for blogging. It means a lot to me. It’s easy to wear blinders sometimes, to forget everything you have by being so preoccupied with what you don’t. People who are suffering are not always able to speak freely about their experiences. I have a friend who suffers from a life-long, degenerative illness. I’ve really haven’t been there for her like I should be, partly because I have no idea what she is going through or what she needs, if anything. She doesn’t like to talk about it, so I don’t bring it up. Reading this is giving me new perspective, into her life and my own. I am traveling and probably doing a good job of expressing myself. I just wanted to say thanks. You are making a difference to people you’ve never met.

    Liked by 1 person

    • I’ve been publishing my posts since the end of August, and your comment has truly given me pause. Most of the comments left are by others who are surviving illness as well and every comment is wonderful it its own way, of course. But to hear from someone who might be gaining different perspective on a friend going through an illness… your comment really meant the world to me. Thank you so much. Your comment was like a warm hug 🙂
      I have a very good friend who has never really known what to say or do, but she checks in when others have just disappeared. That has meant so much to me. We have grown much closer over the years because she just hangs around 🙂 If you are still in your friend’s life, I guarantee you are doing much better than most of the others she had going into her disorder. And don’t be afraid to ask anything- I’m sure she’d love a chance to share what she’s been facing.
      Thank you so much for leaving this comment. I hope you have a very happy holiday ❤
      -abodyofhope

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Life with an Illness

*Tips and tricks on how to get through life when you have a chronic illness*

My Instruction Manual

I never learned how to live, not really. So I decided to write a guidebook, an instruction manual” for how to be happier, healthier and more productive.

A Heart For Chelle

A raw and honest account of life on the heart transplant wait list

chronicjoymin.wordpress.com/

Radical hope. Compassionate change. 501(c)3 non profit

Athlete On Steroids

Powerlifting, fitness and life with adrenal insufficiency

Holding Patterns and High Tea

all my benevolent monsters

CHRONICALLY COOKING 🍳 WITH FIRE

Cooking with Chronic Illness'

On The Right Path

Promoting happiness, while living with CRPS and mental health disorders

cancer killing recipe

Just another WordPress.com site

The Crow Diaries

Life, Love, and Everything Else

painintheBECK

Pain + Perserverence + A Sense of Humor= Living Each Day, One at a Time

The Invisible Warrior

Living, Learning, and Loving with chronic illness

As Ellie

Making the most out of life as a chronically ill teenager and trying to make a difference.

mySestina

glory of words

Eponine Josette

"It's such a liability to love another person."

%d bloggers like this: