This week has been physically hard for me. I had severe fatigue where I couldn’t even hold a remote control or Xbox controller. I try to not get down on my body when this happens because I think I know the fatigue or brain fog will pass.
But I’m terrified that it will last for a long time. I don’t remember much of 2018 because the brain fog and fatigue was so bad. The only way I can tell you something I did is by going into my “year in books” on goodreads.com and see the books I read. I remember those, but I don’t remember much else. That said, I can’t remember them off the top, bottom, or side of my head.
When I got sick, I separated myself from my body. What I mean by that is that, as a defense mechanism, I viewed my body as a wholly separate being and entity from me. I wasn’t dizzy, my body was; I wasn’t fatigued, my body was; I wasn’t brain fogged, my body was. Maybe that wasn’t a healthy way of doing it, but it is the way I had to do it in order to survive.
I hated it. I hated my body because it was letting me down every minute of every day. I wanted to present, I wanted to work, I wanted to do something meaningful. Instead, all my body could give me was one heartbeat at a time. So, I wasn’t able to cook.
I used to cook on Sundays when I lived down in Ames, just before I got sick. I would decide on recipes to make on Saturday night, order a delivery of the groceries, and just cook all day on Sunday. My record was 7 dishes: Herb-Crust Parmesan Salmon, Cauliflower Pizza Dough, Pizza Sauce, a pizza using the cauliflower pizza dough, Sugar Free BBQ Sauce, Crockpot BBQ shredded Chicken, a sugar-free mock Wendy’s shake, and stuffed mozarella chicken parmesan.
One of my ex-therapists (I have seen at least 8 therapists since getting sick, 2 of whom kicked me out. Yeah, I’m that nuts) told me to cook. I tried to explain that I had such severe brain fog that I can’t even remember what I did yesterday, so it was not safe for anyone in my house for me to cook. She said, “Then make a sandwich.”
I don’t feel like making a sandwich is cooking, if you make the meat that goes on the sandwich or the sauce that goes on it, sure. However, she was saying, “Make a peanut butter sandwich,” as if that was going to help me feel better.
I can’t plate the dish to make it look pretty because I’m pretty shot after I cook the meal. But I cooked it and that’s what matters to me.
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I was severely depressed because being chronically ill sucks. And I am usually good at recognizing pattern, but I couldn’t figure anything out for my chronic illness. Some days were good, some bad, with no patterns to what caused it. When you can only do three things (reading audiobooks, watching tv & movies, and playing video games), and sometimes you can’t even do them, you get sick of them.
So, I wasn’t able to cook for 3 years. When I went to the eye doctor, she told me that I had inflamed corneas and dry eyes and prescribed Restasis for it, and I wasn’t expecting anything from it. I was thinking that it would just help clear the inflammation from my eyes and that’s all. Three weeks later, I could wear my clear glasses (I had to wear dark glasses for 3 years because I would get severe migraines if I wasn’t wearing them) full-time.
Then, on a whim, I decided to try and make a box of brownies, knowing that I would probably need my mom to finish them if I couldn’t. Got all the ingredients, mixed it up, put it into the oven, and then took them out.
I needed a few days to recover, but I tried something else, another small recipe that didn’t include many steps. This was a recipe from scratch of cooking over the stove, and I couldn’t finish it because the anhidrosis started stabbing my back since I can’t sweat. I got the ingredients and everything done, but I couldn’t withstand the heat. I needed a week to recover from that one, but I came back and cooked another thing and cooked it all the way through. And then another several days later.
Since I have been able to cook, even though I am not able to do it every day, I enjoy the things that I can do. I enjoy getting to sit down and read an audiobook, or watch a YouTube video, or play a video game. And I cook when I feel the need, desire, and ability.
So, I’m still chronically ill. I know that cooking will set me back and that I will sway around like a drunk after I cook. I can’t plate the dish to make it look pretty because I’m pretty shot after I cook the meal. But I cooked it and that’s what matters to me.
What I cooked This Week
My brain sucks at remembering to take pictures. But I made a few things this week that I didn’t take pictures.
- Homemade Nacho Cheese
- Crockpot Leg of Lamb garlic onion roast
- Garlic mashed potatoes
The Chronically Ill Chef 