When food can cause so much damage, it's tough to enjoy eating
My parents always joked that my dad eats to live and my mom lives to eat. I started out somewhere in the middle; I loved food and let myself revel in how pleasurable a good meal could be. I also loved mealtime in itself, as a time to slow down and connect with friends or family. I think the Jewish part of my identity also ingrained in me a connection between food and spirituality, or at least tradition/ritual. On the flip side, there was always something a little weird about my need for food.
I would wake up at the crack of dawn feeling like if I didn't get a slice of bread NOW I was going to either pass out, throw up, or punch someone. My parents would come downstairs on a Saturday morning to find me at the bread box, and laugh at me for being a "bread head." We now know it was hypoglycemia, or low blood sugar, but at the time it started to feel like food was an annoying means to an end. I became afraid to go anywhere for long periods of time without sufficient snacks, for fear of these moments. This anxiety got worse when I started getting migraines, because sometimes the only way to keep them at bay was to eat disgusting amounts of food.
As my GI symptoms became worse, three meals a day became a joke. I'd have to eat four or five times a day, plus snacks, to keep up with the rate food was leaving my body. No matter how much I love food, it gets exhausting to have to cook that many times in a week. I started eating frozen TV dinners because I just couldn't get myself to spend that much time each day in the kitchen. Even that felt excessive, though, to have to sit down and eat that many times, often without anyone to eat with, which was something I hadn't done before.
When nausea became a frequent symptom, food could be repulsive. When it started to become clear that certain foods made me sick, food became something to simultaneously fear and covet. I would gaze longingly at people's ice cream or sniff their pizza.
This last year or two, my relationship with food has become far more complicated. On the one hand, it feels like poison. I remember getting the list of foods to avoid from my geneticist and thinking, "wait, what foods aren't on this list?" And when I first tried (and failed) the MCAS diet, I didn't understand, if I was following the list perfectly, why I still clearly reacted to food. I then discovered that the list, developed by Swiss doctors, was not the only one, and that every low-histamine list I found was vastly different. It was infuriating, and often literally nauseating, to try to figure out what I was supposed to do! I eliminated everything from all of the lists and was left with a laughably small number of foods. Still I reacted.
My mom brought up the idea of only eating foods that I had eaten in Ireland, when I'd felt great. So, we took the list of acceptibles from all lists, and further eliminated foods I hadn't eaten in Ireland, until we got down to just oats, potatoes, and chicken.
When the diet finally started to work, food went from being a poison, to feeling like the key to unlocking the mysterious illness that I had suffered with for 15+ years. Not only did my GI symptoms go away, but my headaches disappeared (for the most part), my skin felt less dry and itchy, and, miraculously, the horrible full-body pain I'd been feeling faded dramatically. I could now shower without wincing and walk to work without feeling like crying. It was amazing that food could do so much magic!
And then the magic wore off when I tried to add in new foods. Duck eggs, wheat, and apples went well, but then it seemed like everything else I added made me sick again. I had gotten used to the new normal of feeling amazing, the idea of purposefully eating something new and potentially dangerous was maddening. Food became something I simultaneously feared and was determined to make work. It sucked.
Something to add to all this -- my energy has varied greatly over the last few years. When it's particularly low, though, it's so tough to get myself cooking. Especially before I got my (still undiagnosed) POTS under control, standing up for too long made me really weak and dizzy. I would resent meals because of what they forced me to endure. Sometimes I will be hypoglycemic or have a crippling migraine and know that a quick snack will make me feel so much better, but I physically cannot get up to make it. And with my diet, I can't eat anything that isn't prepared fresh, so I can't even make a large batch and eat leftovers for the next several meals. I have to cook every time. I can't even buy things at the store and stock up for the week -- I have to eat everything within a day or two after opening, so I often take three trips to the store each week.
Recently in my diet, I have gotten over the common side-effect of elimination, that you react to everything new you add. Especially in hyper-allergic (that's you, MCAS!) people, lack of exposure to something can lead to new allergies, even if you weren't allergic before. I now have enough variety to have gotten past that. I think I'm also, through exposure in small doses, getting over my intolerance to salycilates and oxalates! Eating these days can be a wonderful dose of hope. It also alternates with excitement (when it works) and crushing disappointment (when I have a setback), but it's so much better than before. Following people like the Low-Histamine Chef, and getting excited to try anti-histamine/anti-inflammatory produce this summer are helping food to feel like medicine, something that can actively keep my disease at bay. One of the drugs I take, quercetin, is naturally found in a lot of fruits and veggies, so if I'm able to actually start eating more produce (so far not so much), then I could maybe one day ween off of a 3x daily pill!
All of this work, energy, planning, failure, and emotional roller-coasters make it so I can't think about food as simply something to enjoy. It's exhausting, frustrating, and a relentless struggle that I can't take a break from for a single day. It's also a source of grief -- every time I discover a food that I have a bad reaction to, I have to say goodbye to it, potentially forever. I have had to get over some of my favorite foods, like cherry tomatoes in the summer. I then have to constantly see people around me eat these foods, but if I express my grief every time, people will stop wanting to eat around me, so I shut up and pretend it's ok.
Food has also become a source of rebellion, something I never really did as a teenager. I do get a thrill when I choose to accept the consequences and eat something I'm not supposed to. Benadryl can keep the worst symptoms at bay while I enjoy a cone of B&J's chocolate therapy ice cream, or fresh baked cookies.
And when I do get to eat something delicious, it tastes so much more exquisite than I've ever experienced before. I never particularly loved mangoes growing up, but my first mango after months of no fruits took my breath away! Yesterday I ate my first pancakes in over a year, and almost cried from joy. I can't remember the last time I ate something so simultaneously fluffy, buttery, and sweet. I have audibly moaned while eating gelato, at a place on our street that makes multiple flavors I can eat. I never knew it was possible to love food quite this much.
**Social eating is a really important aspect to all of this, and I'd love to share thoughts from other spoonies, but this post seems long enough! So, I will continue this train of thought in my next post.