Uncontrolled

**This post is a compilation of rants I messaged to a friend last week with additions of expansions and information deposited here and there. Sorry for the raw honesty.**

On October 2, I was driving the car down the highway. And the air conditioning literally just froze the muscles in both of my forearms. I suddenly couldn’t control my fingers and then all the way from my shoulders down. Everything was uncontrolled… I was driving 65/70mph! My twin, Kyli ended up taking the steering wheel and helped with steering us into a parking lot so we could switch drivers. But the entire time before that I was fine. Like completely fine… And my whole life just suddenly feels unstable. Like I can’t even count on my own body to let me drive a frickin’ car.

And it’s like I can’t count on anything at all.

Try as I might, I don’t know how to fully surrender that to God. And even when I do, even then, as soon as something else triggers my autoimmune and I flare up, my entire body panics. Part of me is like: “How can I not freak out? And part of me is like: “Why can’t you just trust God?”

There are days when I can’t walk. Like literally my spine is so inflamed that it’s sort of like I am partially paralyzed… I have no control over my fingers or toes, my muscles visibly swell and are rock solid, my face goes numb so I can’t even control my tongue movement, and my migraine worsens so bad that I’m lightheaded and I see flashing colors.

And that, that is my life.

It is affected by food that I eat, stress I experience, weather around me, and relationships that I am invested in. When I eat too much of certain foods (like gluten and dairy, which is super sad…), I am more likely to suffer a flareup. It makes me puff up and recently, has the potential to attack my breathing. If I am upset emotionally or mentally, my muscles start to harden and then lock so I am unable to move.

Sometimes, I make unwise choices that cause my entire body to go into defense and shut down automatically. There are some things that I know have the ability to cause stress and tension or physically be challenging. I hate this, but I have a severe case of FOMO (fear of missing out). It’s gotten better as time has gone along, but it’s a mindset I still slip into when I am not consciously trying to fight against it. Last summer, I was asked to join a group of friends play volleyball at the end of the youth ministry event. I said yes because I liked spending time with these people and that’s what the other six people I knew were going to be doing. I played for about ten minutes of just playing in a circle when I started to feel my forearm muscles to lock. The pain started to become unavoidable, but I kept playing for another five minutes. But then my muscles were inflamed so it was visibly tight and raised by almost a centimeter. I went to the bathroom to bathe my wrists and forearms in hot water in the sink, and all I could do was be mad at myself for not being able to say no. And to be mad at the fact that I couldn’t do something so simple that everyone else I was with could do. But it’s no one’s fault per se… I just chose to do something I had already identified as a risk.

And then there are times when I am not doing anything that would knowingly cause an issue, but for some reason I can feel another autoimmune attack coming. I could be doing something that I had not yet recognized as or believed to be a risk, and yet the fact that something is wrong is looming above my mind. And there’s nothing I can do about it. The anticipation of it starts to set me on edge and I start worrying about it, which makes it worse. It’s almost like I am ready for it to be worse than it is, which allows it to get worse. Or even forces it to get worse. Yesterday, I was just taking a nap for fifteen minutes. When I woke up, I recognized the fact that I had already started dreaming. I sit up and am literally just getting up with the intention of going to get dinner. And suddenly, my heart starts racing and I can feel my entire chest compressing as my heart quickens. Within half a minute, my bpm has gone up to a 106 from what had just been a 56… in just as long, my heartrate was back to the normal 59. But me freaking out about the pain and speed of my heartrate made it faster. And something even so minute as the locking of a wrist causes me to panick and worry, which makes everything hypersensitive and triggers more symptoms.

Sometimes, however, a flareup just shows up in the middle of nowhere. Walking down the sidewalk, in the middle of the night when I awake, in the middle of an exam. I have absolutely no control over these types of attacks since I don’t know what caused them. It becomes an extended game of what I could have done differently or if I even have a way to control the triggers. Over this past summer, something about my autoimmune was causing breathing to be extremely painful. Between the difficulty breathing and the intense pain I felt in my lower back, I called off work several different times, completely feeling helpless each time. And every time I did, it ended up being this whole evaluation of what had gone wrong. What did I eat in the past 24 hours? How long was I sleeping? According to my sleep data, what type of sleep was I getting? What was the weather like? How much physical activity had I been doing? Was I worried about something else? Unfortunately, very little seemed to ever correlate, and I am still quite confused a lot of the time. I have some guesses as to what I was doing wrong and what I could be doing, but honestly, a lot of it is rather ambiguous.

There are days where I honestly just want to find someone to blame. I don’t care who that might be: doctors who don’t have answers, friends and family who don’t know how to support me best, myself for taking risks that I should not have, or even God for not just taking it away. Uncontrolled. It feels so uncontrolled.

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