It never fails.
Some days I don't have everything on there. Like slurred speech? I'm not sure I've ever had that. I guess I can't exactly be the judge of that, but still. Most of the others I have. All day. Every day.
I don't understand why.
Why do I feel this way?
Why am I not normal?
Why can't I experience life as a normal teenager?
Why do I, of all people, have to go through this?
Why did God decide I was one of the strong ones that could handle this?
I feel so far from strong. I feel weak, honestly.
Keeping your faith through chronic illness.. it's so hard. A lot of people feel like God is punishing them for something bad they've done by forcing them through this. People think that God hates us, and thinks we deserve this.
In all honestly, I have thought that before. I have thought that God hated me. That he didn't think I deserved to be happy.
It's still very hard to refrain from thinking that, even though I know it's not true.
I know he loves me, but...
In my world, Chronic Illness seems to have put up this sort of wall between God and I. A lot of days, I can walk around it, and go right to him for comfort. But sometimes, on the hardest days, no matter what I do I can't get to him. I can't walk through it or around it. I can't crawl under it and I can't jump over it. No matter what I do, the illness keeps me from reaching him. I've found that those are some of the darkest and most difficult days.
It's just so hard to keep your faith up.
Every single night for the past 2,480 days, I've spent my time praying the same prayer;
"God, I don't know what you're doing. But I trust you. I know you have a plan for me. But this is getting really hard. Please show me a way to stay strong as I endure this. I hope that one day you find it fitting to give me some relief. Until then, keep me, and all the other people suffering close to you."
Every night.
Probably not word for word, but you know what I mean.
And you know what? Nothing ever changes. Ever.
It's the same thing every day. That picture. The fatigue, the pain, the cramping, the irritability, the brain fog, the confusion, the hypersensitivity, the headaches, the allodynia. And so much more. Nothing ever lets up.
The only thing that keeps me going strong in my faith is the rare moments where something does change.
In the past nearly seven years, the longest I've gone without pain is roughly 5 minutes.
I described it awhile back in one of my blog posts. It was at the choir I'm in's annual Christmas Concert, Angels Sing. We were singing the song, O Holy Night and... the pain just disappeared. It evaporated. I was standing on stage doign what I love, experiencing one of the most surreal moments ever. It was absolutely phenomenal.
Music seems to be the only thing that helps me stay close and believe that God is real, and that he has a purpose for me being in pain. My current favorite Christian/Worship song is "We Won't Be Shaken" by Building 429. The lyrics go something like this;
"This world has nothing for me, This life is not my own. I know You go before me and I am not alone. This mountain rises higher the way seems so unclear. But I know that You go with me so I will never fear. I will trust in You.
Whatever will come our way, Through fire or pouring rain - We won't be shaken.
No, we won't be shaken. Whatever tomorrow brings, Together we'll rise and sing that we won't be shaken. No, we won't be shaken. No, we won't be shaken
You know my every longing, you've heard my every prayer. You've held me in my weakness 'cause You are always there. So I'll stand in full surrender, it's Your way and not my own. My mind is set on nothing less than You and You alone. I will not be moved."
These lyrics really help motivate me, I guess. They motivate me to do as much as I can to feel as good as I can. That's not an easy task.
Sometimes I don't know how I do it. All of it. Any of it. People say that to me a lot. "I don't know how you manage being in pain all of the time." or "It's amazing how well you keep your faith through all of this."
To me, it's just second nature. I don't have a choice. I can't choose whether or not I'm in pain. I could choose if I kept my faith or if I lost it. But I choose to keep it.
It's really not easy to explain. When you're in such agony all the time, the littlest things can often bring you the slightest bit of happi. You learn to slow down and live to the fullest. You learn that anyday could be the day a "normal" illness (like a cold or the flu) could come, and make you worse for the next month. You learn to slow down and listen to what your body is telling you - maybe you need to lie down, or sit and rest for awhile (the problem with this one, though, is that a majority of us are too stubborn to listen. We all want to be as normal as possible, and ignore what our body truly needs. And we suffer for that later on). You learn how to better cope with all these horrible things.
But you also learn that you're strong. You learn to manage this pain and this sickness, when a lot of people can't cope. You learn to shut your mouth and offer sympathy when someone complains of being sick (even though on the inside you want to say. "welcome to my world." or, "at least yours will be gone by tuesday."). You learn how to be a better friend. You treat people with the kindness and empathy you only dream of being treated with, and you judge people less.
That's all great stuff. Except for the fact that people still don't understand. They don't comprehend how much it kills you on the inside to see someone coddled for something as minute as a bad cold. When you're sitting there in extreme pain, fatigued, with migraines and nausea, no one notices because you have your "I'm fine, I'm happy" face on. And it breaks your heart. Because this other person is sitting there coughing and sneezing and crying because of their cold. and everyone is sitting with them, trying to cheer them up and make them feel better. And here you are, just glancing at your parents. Even though they don't know how you feel on the inside, they know exactly what you're thinking.
"I wish they cared that much when I got sick."
Society seems to get tired of a sick person. Of a chronically ill person. They can't grasp that a sickness can stay with you your entire life. Society is becoming more accepting and knowledgeable about different kinds of intellectual and developmental disabilities. But is seems like.. if you look like you're "ok" - not in a wheelchair, on crutches etc... Then you're fine. You shouldn't complain, because somebody somewhere has it worse.
Someone doesn't have their legs.
Someone is dying of cancer.
We've heard it all before. But criticizing us for wanting empathy when someone else has it worse only makes it harder on us.
No. I don't want you to sit with me and talk to me about how it's going to be okay. I don't want to hear about God's plan for me. I don't want you to say you wish you could take the pain from me. I don't want you to tell me about that herbal supplement your aunt tried that cured her chronic pain. I don't want you to look at me differently. I just want someone to listen. I want someone to listen and understand. I don't want you to fix my problems, or fix my health. I just need someone I can talk to who won't say everything possible to try and cheer me up. I just want an ear. Someone to tell me, "No, it's not okay. It's not fair that you have to live like this. It sucks that you have to go through this. I don't know how you feel - I probably never will. But I'll be here for you. No matter what."
But that probably won't happen, because people really just can't understand this heartache that occurs for chronic illness patients on a daily basis.
People can try to understand. But they don't. They won't. It never fails.