It’s hard to explain and put into words, but I sometimes find myself not quite feeling like the me I know. My body is under an enormous amount of stress and changes. I don’t even have a clear understanding of how the surgery is impacting my body right now. The pain is there so strong sometimes I can’t even gather a sentence in my mind. It’s very frustrating to feel trapped in this body I can’t communicate with.
In the ICU when I first woke up the nurse told me I would only need to wear the brace for a day or two. When the doctor came in and said I had to wear it for three months, no exceptions, they had a special one for the shower, my eyes got hot and I had to hold back tears. It seems a small thing to cry about at the time, but it was another example of control I don’t have over this situation.
I didn’t think adjusting to this brace would be so difficult. It impacts and changes everything I do. There’s also a layer of fear of what happens when I take it off for the few seconds to put on the shower brace. Since, I had that hard fall right out of the hospital I’m terrified of falling again. My hands, knees, and feet were so bruised and I can still feel the tenderness. Luckily, I had X-rays that showed nothing shifted in the fall. I got these yoga sock with sticky grabbers on the bottom and they work well on carpet.
I guess as I’m writing this I’m realizing how fragile I feel. If I wasn’t able to get my hands out in front of me in time and my head hit the floor I don’t even want to think about what that could’ve meant.
I’m trying to stay as independent as I can, but I’m in a season where that’s not really possible. I need help with everything and can’t be left alone by myself. I’m so grateful for my family and that they truly help me and never make me feel like a burden. I just thought I was past this place on my life and wouldn’t be back here for a long time.
I think from how big of a surgery and the fall my body is just hurting and covered in deep bruising. I’m constantly shifting positions to try to get some relief. I found pillows help a lot to sleep with. I prop myself up with the brace. Nights are hardest for me to sleep. All my doctors kept asking why and I had no idea. My mom gently pointed out she thinks from her observation it’s because I feel safe enough to sleep. When she said that it hit me so hard. That’s the truth. You think that having three brain surgeries would make you a “pro”, but there is still so much I don’t know. The hospital forgot to send the packet for a neck fusion, so I never got to prepare with that. The discharge papers are incomplete so we have to call the hospital again.
There’s just still so much unknown. My body is aching and sore. it’s definitely been through a lot and my stamina level keeps dropping. If I get up and brush my teeth I need to lay on the couch for a few mins.
It used to not be like this. I used to hike, run, horse back ride, always was trying new sports. I loved being athletic and trying new things. That part of me is gone. I woke up one morning feeling “off” and never got better.
I’m sad it happened when I was so young. Sometimes I feel like I’ve missed out on the young adult years. I see my peers hitting all the milestones while I feel stuck in an endless loop.
I get all anxious that there’s this deadline of life goals that I’m not meeting and a schedule that’s in constant change.
Sometime, I just want to feel normal. Not carrying a “rescue bag” for if I get an episode while I’m out. I would like to not always be hyper focused on how much energy I have and how to conserve it or stacking things so I can get the most done without triggering fainting. Some days my body feels so foreign to me.
I don’t know God’s plan for my life now or in the future. I don’t know why I got sick so young and then spent years with misdiagnoses that caused more damage. I don’t know why I feel like I’m on the outside watching inside all the time. These are questions I’ve brought up with God a few dozen times, but I never know the answer and I may never get to here in these shadow lands. But, the one thing I know with certainty is that even when I was begging God to heal me and all the nights I cry myself to sleep. He is there with me listening. I’ve come to the decision that I don’t need to know the “why’s?” It wouldn’t change anything. I would still be here sick and restless, and my God would still be loving me through it.
I’m far from perfect. I dont know why God has not healed me or if that’s in His plan for my life. I do know that He loves me. He loves me so much he became the Man of Sorrows and bore my sin and my sorrow to the cross. Now I have an eternal home with a loving Savior waiting for me.
I started this blog to give updates on what was happening with my health. But the more I write and the more I learn of life and meeting people , the more I know we are all suffering from silent wounds. It may not be several complex neurological conditions like me, but there is something in your life that is causing you pain. Maybe you’ve prayed and begged God to remove it but it stays. Jesus was a Man of Sorrows not just for me and a select group of people. He was a Man of Sorrows because he carried your pain, your sorrow and your sin with Him to the cross. He did that for you because he loves you.
Weathering Chiari 