My journey continues to be nothing like I thought it would be.
After striving so diligently for 3 years and 9 months, I’m still in the midst of a very frustrating health struggle. I’m weak. My arms and hands hurt and are not as strong as I need them to be to do a normal amount of work. I worry about them a lot. My muscles and joints crack, and every day there are points where I still don’t not have enough energy to walk into another room to get what I need when I need it.
I don’t have enough energy to be writing this post. My right arm is killing me, saying, stop, stop. You’ve done too much already today. Give me a break.
But I need to get my frustrations out. Onto the page.
My brain and body go through these phases of not feeling so great and much worse. Today my brain energy was already behind by the time I reached 10:00 a.m. I knew because my handwriting got squiggly while filling out medical forms after I’d been writing for just a few minutes (I can often go for about 3 pages before that happens). I had an appointment with a new doctor to go to, and I needed to drive there myself. By 2:00, I was ready to lie down.
Yesterday I made a pumpkin pie with no wheat and no dairy because I’m trying to eat in an anti-inflammatory way to keep my pain and other symptoms down. It really does make a difference. If I eat too much wheat or sugar, my pain skyrockets, as do the numbness and weakness and tingling and muscle spasming.
GOOD LUCK WITH THAT, ELIZABETH. My body, energy-depleted as it is, CRAVES carbohydrates when it gets worn out, and it’s hard to say no. Carbs are comfort.
I spent several hours in the kitchen, cleaning and preparing pumpkin from scratch, and by the time I finished, my arms and hands were hurting too much. I overdid it. I am starting to recognize how brain energy affects my whole body’s ability to do its job. My physical therapist has been working with me on sensorimotor integration and proprioception, not pushing my pain beyond 2 points, but I used to apply that mainly to head pain. Now I need to heed my entire body, which is tricky to do. We’re trained in every activity we do growing up to keep going, when the approach to brain injury recovery is so much more nuanced (do as much as you can, but rest when you’re done, and then don’t rest for too long, but get up and going again. Such a tricky balance!). I’ve done my best to stop when I’m fatigued, but I’m recognizing more and more that I still push myself into the exhausted zone without realizing it. I’ve been trying so, so hard, and here I am, still massively struggling with it.
Frustrated. Frustrated that I keep getting new and increasingly overwhelming information that I haven’t the faintest idea how to use and uncertain whether I’ll be able to fix my problems in time. Frustrated that I am still so far from being able to return to a normal amount of activity, which means work, socializing, dating, creating, traveling, living autonomously, basically achieving a modest amount of dreams for my life that used to not seem so outlandish. Frustrated that those dreams might not even be in the plan for my life because of my health problems. Frustrated that those dreams might be eventually and that I have to wait for them in the midst of a really confusing mess that somehow miraculously keeps not falling *completely* apart. Frustrated that I feel like I’m doing something wrong to not be able to achieve my dreams right now.
Frustrated that I go in and out of huge God gaps where I feel like I just can’t reach out and why would I want to, it’s not working anyway and I’m somehow the problem in the God equation. Frustrated that I’m so weak and somehow can’t figure “it” out for all my trying. Frustrated that reading wears me out so much that it makes my body hurt. What in the world kind of weirdness is that? Frustrated that my mind still feels like a foreign country I’m walking through in a foggy swamp and that the more I learn the less the universe makes sense. Frustrated that I process the world more slowly and more poorly and that it takes longer for me to do a lot less. Frustrated that I can’t go out whenever I want and that I lose out on opportunities that ought to be my opportunities. Frustrated. Frustrated. Frustrated.
Maybe if I write it enough it’ll come out.
At the same time, I’ve been feeling so grateful lately. So amazingly grateful that I am where I am, that I have the resources I have, that I am able to continue seeking for answers and that there are therapies and doctors who know how to help. I’m grateful for my PT who is skilled and who has helped my pain come down a lot (although it spiked again, recently). Just really grateful.
Okay. I feel like I’m going to pass out. A definite sign I’ve moved over into overwhelm. But thanks for reading my little meditation on frustration. It kind of helped.