Thursday, February 5, 2015

The Dark Side

Has anyone heard the song by Sidewalk Prophets called "The Words I Would Say"? If not, go listen to it, I like it. But there's a line in it that says "It's 3 in the morning, and I'm still awake..." Not to get deep or anything, but sometimes they just speak the truth!

Okay, it's not quite 3 in the's only about 1:30, but for some reason I couldn't get those lyrics out of my head. Although, the rest of the song goes on to be encouraging and uplifting...and this post will be anything but...the reality is that living with a chronic illness has a dark side (no pun intended due to the current state of the sun outside =P). There's a side that no one sees because facebook and texts and even this blog (while I try to be honest), hide what goes on when no one is watching.

The restless nights spent wide awake from nausea and pain and restlessness due to symptoms not letting me sleep.

The LONG days at work/school that are really only 4 hours long because I'm not sleeping, can't eat, and am exhausted.

The hours spent learning every last crack in the bathroom tile because I haven't left all day due to nausea or vomiting.

The questions that arise every time a new symptom appears and not knowing what is going on or how to treat it and flying blindly and hoping for the best.

The reality that I carry more medications than a pharmacy with me just so I have what I need to treat whatever symptoms may pop up during the short time I'm away from home.

The fear that comes with having to educate doctors and nurses when the real reason I'm in the ER is because we think I'm in anaphylaxis.

The inability to do my work for school because I'm in a drowsy brain fog from a medication change.

The awkward moments that come up when you pass out or have a reaction in public and then you have to see those people again and feeling like you have "YES, THAT WAS ME" projected in neon letters over your head.

The many "date" nights spent in the ER or hospital to get some relief from unrelenting symptoms or treatment for new ones.

The endless doctor's appointments that become a permanent fixture in my calendar like a second job.

The isolation that comes from spending so much time alone at home feeling "grounded" and unable to drive anywhere because of my symptoms.

The many canceled dates with friends and missed events that happened because of a severe flare of symptoms and the far too routine text message to apologize yet again.

The constant fear of passing out or having a reaction that comes on too quickly for me to avoid when I'm out and about and not in the comfort of home.

The guilt that comes in knowing this is the reality that my family has to face every day and wishing I could take that weight away from them.

The inadequacy that comes from feeling like I am not measuring up to what I should be able to do at school as a PhD student working on my dissertation because of my illness.

The emotional and spiritual exhaustion and struggle that sometimes feel more overwhelming than the physical pain.

This. Is. My. Life. 

I'm not writing this blog to get sympathy. PLEASE do not feel sorry for me. But please do keep praying. I want this blog to be a place where I can keep family and friends updated on what is going on because I am grateful for all your prayers! At the same time, I also hope that this can be an encouragement and resource for other people walking this same road that I am. And the reality is that this is a tough road. Some days it's just too much. I know everyone has their own struggles, and I'll be the first to say that the things I struggle with are no more than anyone else. We all have our own trials, mine just happen to be medical issues right now. But I want to be honest. 

It's in my nature to be positive. I try to find *something* positive even if the only thing I can come up with is that I got to wear my favorite shirt today. (Hey, having laundry done is something to be thankful for!) Even for this post, I keep trying to find a positive angle that I can end with...but I'm not going to.

Because the reality with a chronic illness is that sometimes bad days lead to bad weeks which could lead to bad months. 

Sometimes there is no end in sight. 

Sometimes when people tell you that things will get better, they don't. 

Sometimes you just feel like you're getting hit while you are down.

It's just the dark side of being chronically ill becoming more real. So I'm going to end with this.

Sometimes life is just hard.

1 comment:

  1. Thank you for sharing this, Kylene. I appreciate your honesty. I am praying for you. May you sense God's presence in the midst of the darkest times. He is carrying you especially when you don't feel like it. I pray for Nick too. Also for your doctors. May God bring healing and strengthen you all along the way. He loves your faith and trust in Him and how you continue to look to Him for what you need. I send my love.