To begin this post, I'd just like to say thank you to those few in particular. Thank you for being the reason why I want to share my struggles with chronic pain caused by autoimmune disease. You are the reason I don't settle for the semblance of labeling myself insane. The support system I've found through YOU, others who experience this pain, has become such an essential weapon in my fight against this disease. There is just no possible way I could do it alone.
Today, I want to talk about the way I've been feeling in a way that I never have before. I don't know if I'll be able to find the adequate words to describe it, but I know there's a significant part of me that feels someone, somewhere out there, feels this way too...
I feel like a grenade, I guess. A ticking time bomb. As the possibility of inflammation spreading to my organs, joint replacement surgeries, and medications that'll make me lose my hair creep their way into conversations with my doctors... This feeling grows. It multiplies until it becomes overbearing. Now, I sit here typing, bruised, battered, and swollen from injections this week feeling trapped. Cornered. Completely ambushed.
In the past 6 months, I have felt and watched myself withdrawing from people who have been nothing but supportive since the day of my diagnosis. I have watched myself say "no" to hanging out with my best friends and hit the snooze button ten times because I am actually unsure if I can make it through another day without breaking down. I have watched myself neglect digging into God's word, singing worship songs, and even praying. My attitude has become one that says "save it." Don't save me, save it. Save yourself the hurt, because this disease...this pain...it is going to be the death of me one day.
I guess I feel wounded. Like I'm truly some sort of bomb waiting to explode. I can't help but imagine that when that happens, everyone around me is going to be left hurting and picking up the pieces. Blaming themselves for the tragic flaws within myself; things that were never fixable...and that devastates me to no end. That makes me want to unexist, if that makes any sense at all. It makes me want to minimize the casualties, per say.
I'm not depressed. I'm not suicidal. I just don't want to hurt people anymore. I want to lay in bed, listen to music, and read books. Occasionally, I want to go for a nice, long run. I want to pray and know that God will accept me into Heaven when the time comes. I don't want to be normal. I can't be normal when I feel like I'm some sort of hazardous weapon.
Truthfully, I know that no one else sees me this way. I know my friends would do anything at any hour of the day to make sure I'm comfortable. I know my team of specialists will do whatever they can to keep me comfortable. I know my teachers will sit and listen to me cry for a solid two hours afterschool if I need it. I know my family tries their hardest to understand the way I feel. I know all of that. But I don't feel it, I guess.
What I feel is as if there are constantly waves are washing over me and I'm left breathing...miraculously. Somehow. All the while, I'm watching everyone else go in and out of the water. They can walk. It almost appears as if they have received a choice while my feet are stuck in the submerged sand and the waves continue to rise and fall all around me.
I don't know when I started feeling this way, exactly. And I know it's a season that will pass. An insecurity the devil is feeding off of. My pain levels have been quite elevated and that always has a lot to do with my desire to step back from things. I'm trying so formidably to focus on the big picture. Thankfully, God gave me some vivid, definite hope last night when He spoke to me through a friend and said, "When you are suffering, child, you are so much closer to Me on the cross."
That reassurance is all I needed. I'm not some character in a book who suffers from a tragic flaw. I am not an unlovable or complicated teenage girl who comes with too much baggage. I am not a death sentence or someone who unpretentiously inflicts pain. I am not a hazardous weapon. I am a work of Christ, a work in progress, and He is far from finished with me yet.
10 comments:
It's completely understandable. CHronic illness isn't just pain; it's exhaustion and it's mental and it's emotional and it's EVERYTHING. Everything it can possibly touch, it does. I have a friend who is in her early thirties with the same chronic arthritis issues you have (she was diagnosed in late twenties) and she has days, weeks, a couple of months like this sometimes. It's part of what happens. Take the time you need to keep breathing, and your loved ones will be there for you when you're ready to get back out of bed, and they'll be there for you if you want to stay there.
Don't push yourself too hard too fast to feel better. Take your time. Just know they'll be there for you when you're ready.
The true people in your life will understand. When you feel up for it, invite one friend for a walk, or coffee/tea/drink/yogurt, start small. When I'm not feeling my best big groups are always hard for me to handle. Start small.
I know the feeling far too well. You're going to get through it and be okay. But the meaning of "okay" might be different from what you think. I have accepted the fact that I probably won't be able to teach full time for more than 5 years, and I don't know how long I'll be able to write for because I already have visible joint damage in my right hand.
Kenzie - if you ever need to talk to someone who gets what you're going through, who went through the years of trying to find a working treatment, who gets it, I'm always here.
Aw, Kenzie - my heart breaks for you and I can relate in so many ways.
My Lupus flared at it's worst my senior year of high school. There were so many days where my mom had to help me get out of bed in the morning, because I was physically unable. I withdrew from my friends because I felt like I was holding them back. And try as hard as family & friends might, they can't really comprehend what someone with chronic pain goes through.
I found through the years, to open up to them. To let the people that care and want to help IN rather than withdrawing and pushing them away. It was a very difficult thing for me to do. I never wanted to admit that I couldn't do something or wasn't feeling up to anything, but it made all the difference. They can't understand, unless I help them understand and vocalize how I'm feeling.
Hand in there sweet girl. I hope you get feeling better soon! I agree with the above comment that big groups can be hard. When you feel up with it, spend some time with just a friend or two. It could work wonders on your spirits.
I swear I could have wrote this post. My heart is in a very similar place right now. My autoimmune issues are the worst they've ever been this year. I was told recently I'll have to have knee replacement surgery on both knees. The pain seems to be unbearable and all I want to do is curl up with my pup and never get out of bed, but even that hurts. Honestly, one thing that has gotten me through, other than the Man upstairs, is YOU! See your strength inspires me to push through. Praying for you sweet friend. We WILL get through this!
I have felt so similarly, Kenzie! The other day, I was so cranky and I couldn't figure out why. Finally, it hit me. I had been in near-constant pain for over a MONTH. No wonder I couldn't handle anything, didn't want to talk to anyone, and basically hated the world. It is so hard when I think about the future and how I'm going to handle med school, or kids, or... anything. Some days, it's all I can do to shower and other days it's mostly fine. The uncertainty is what gets me. I feel so out of control and that is one of my least favorite ways to feel! I, too, have been withdrawing, canceling plans, pulling away. I worry that it's my depression getting the best of me, but sometimes, I just need to rest.You will get through this; we all will. I'm cheering for you!
I have never felt that way, I have no idea how you remain so strong to share so candidly how you have been feeling, but I do know that you are strong. Recognising those things, you are taking each day as it comes. I really hope you continue to share your story, if not just for yourself, your family and friends, but for those who have witnessed to someone going through the things you are, and for those, like me who have never been in that situation. Keep on Keepin' on.
As I always say, Happiness is a choice!
Love you so much Kenzie. Your words have power, your life has power. And we are blessed immensely from your vulnerability of sharing both of those with us here.
He is using you mightily my friend!
Hugs, love and prayers for you dear girl!
I know EXACTLY how you feel, and I go in and out of feeling that way constantly. I have an auto immune disease as well. I tell my boyfriend that I am the "collector of ailments". It seems like things just keep getting worse as time goes by.
It makes me cry because I am only in my early to mid twenties. If it is THIS bad now, I cannot even imagine what it will be like when I'm sixty. But I find strength in God and try to stay hopeful that I can turn things around. I recently started a new medicine so I'm hopeful.
Hang in there <3
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