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Updated: Feb 18, 2019

Hola, Amigos! Clickbait...this title is clickbait.

I’m sure most of you read this title and a smile started to form on your face. Your eyes probably started beaming and you thought to yourself…  “Good for you, Kirsten. Way to push through.” Lets face it, we all want to hear inspiration porn stories. Then there are those of you who have a chronic illness (or multiple) and saw this title and thought, “How?”  And then of course there are a few of you who thought, “The spoiled girl is finally getting her shit together”.  Either way you were intrigued to read which means i’m spreading awareness.

My full time job is to take care of myself and if there is any spillover on a certain day I get to do things for the people I love. While that doesn’t happen nearly as often as I would like, I look forward to those days and do the best I can in between to make the people in my life feel as special as they make me feel.

How to spend my energy is usually an extremely calculated plan of action. Make sure you eat small meals, Kirsten. Make sure you don’t carry the laundry up the stairs, Kirsten. Don’t try cleaning all three bathrooms in the same day, Kirsten.  You have a doctor appointment tomorrow. Make sure you rest up, Kirsten. The list goes on; you get the picture. Trust me, I would much rather be the Angie Shady and Katie Goesttsch’s of the world with what seems to me like an unlimited supply of energy. I call them “supermom’s” (don’t worry ladies…I know you get pooped too but you sure are doing a great job!)

Over the past couple of years many new tasks and life adjustments have been added to the “just take care of yourself bullshit.”

I’m just gonna lay it all out here…okay?! Ready?

I’m fatigued. I’m constantly fatigued, but can never sleep which means a lot of laying around. In order to keep my sanity I have delved into this -“ogging” world to help pass the time, make my days feel a little more accomplished and hopefully help those who are dealing with similar situations. 

I’m nauseous. I make sure to eat things that won’t bother my GI system if I can even fit anything in there. If i’m struggling with a lot of autonomic symptoms or pain that day, I forgo solids for liquids because it’s one less thing to worry about. I’ve often thought of putting a daybed in our bathroom as i’ve spent a lot of nights on the bathroom floor folded over myself with cramps as my food tries to move from start point to end point.

I’m dizzy.  Who knows what will trigger it and on what day so I just do the best to avoid my triggers, which is sometimes just standing for more than a minute. I avoid exercise because my heart rate skyrockets. I avoid standing too quickly. I avoid hot showers and can’t even enjoy my hot tub anymore. I always make sure I have COLD water to cool me down wherever i’m out and of course a packet of electrolytes since my body is constantly in a dehydrated state. In school choir I chose to lip sync because singing while standing was not an option. During a summer wedding with temperatures reaching 102 degrees I wore spanks just so I could stuff frozen washcloths down the front and back to cool my body temperature.

I’m in pain. It’s really hard to avoid pain when you have to rely on only muscles to keep yourself together. They get overworked and are in constant spasm. The dislocations happen everyday and I have a rib that lives out of it’s joint because the connection point is destroyed. When I feel it slide up underneath the one above it I want to throw myself at the wall. The instability in my neck makes it hard to hold my head up at times. Pain is always there, but it’s manageable. However, on the days it is combined with other issues (ANS malfunction, GI issues, fatigue, etc.) it gets hard.

So while I don’t have the typical “job” I sure feel like I do.  Like any job, some days I feel defeated and other days I feel proud. But i’m always thankful for my husband, family and friends that make life a bit easier for me so I can do my job and do it well. I mean after-all, what is life if you are unable to enjoy it with the people you love?

Remember, "Count your Rainbows, not your Thunderstorms!"

xoxo Kirsten 💕​

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