EDIT TO ADD: In checking the dates to begin blogging my health journey, it turns out it is exactly 4 years ago TODAY that I had my first conversation with this doctor I found who finally diagnosed me! What a coincidence I begin blogging this journey today!
For my fellow mcas sufferers, “losing foods,” is a very real fear; the list of foods your body tolerates can shrink frightfully! For my fellow spoonies, (people with chronic illness…. google “spoon theory”) special diets to help reduce symptoms are often a way of life as well.
My first special diet, an elimination prescribed by the first functional med MD I ever met, was around 2005. In three days my BP dropped to a safe range, and in a month I was off five medications. I was amazed at the power of food, and it was very motivating, and pretty easy to stay off the foods that were shown to be major health issue triggering for me (gluten and corn).
Years later, my health was spiraling again, and I tried other “healing diets” recommended to me, and found some improvement but never enough. I finally was introduced to the Autoimmune Paleo Diet by my Pilates instructor, and that made a difference. But then after a few months my reactions to foods increased, and I could not figure out why. (It turns out batch-cooking and eating leftovers all week is a no-no unless I freeze them. Leftovers are very high histamine!) Removing more and more foods from my diet was stressful, and not healthy in the long term. But I was having more and increasingly severe “allergic reactions” to things I had eaten all my life. Cashews sent me to the ER first. Sometimes I couldn’t even figure out what was causing the reactions.
Finally, in a Providential way, I ended up meeting a doctor who knew a little (and went to great lengths to learn a lot more) about MCAS. Now the shrinking list of foods had a cause, and we began to work on stabilizing my body so that it would tolerate more foods. I eliminated high histamine foods from my list (tomato, strawberries, cheese, yogurt, and more), found some true allergens to eliminate (almonds, peanuts). This helped reduce allergic reactions, but my health was not going to be a quick fix, especially with finding Lyme/co-infections, parasites and mold illness also at play. More food changes would be required to help me heal.
Can you say overwhelming?
I was so sick, that despite having experienced radical healing from food changes in the past, knowing that making the new food changes that could help, felt like an impossible mountain to climb. With my combination of diagnoses, there was no one-size-fits-me food plan available.
So there I was, in 2017 , sicker than I had ever been, exhausted, able to work less and less, and needing to begin the healing work necessary. But without having the mental bandwidth to move forward.
No one could make these changes for me. No cookbook existed that fit my situation. I was the most sick-and-tired I had ever been.
I couldn’t do it.
I tried. I researched. I tried certain healing food plans/recipes and had severe reactions to them; crossed off more foods (ferments, broth, and other healing foods) off the list. But I couldn’t do the swift and thorough change like I had been able to do multiple times before. I had some improvement, but not enough. By this time, I had read multiple books on my diagnoses, I had even become a certified health coach. And I still felt stuck.
For a long time, I felt like a failure.
Then I decided: I would give myself grace for doing the best I could at the time. And I would do more when I could. I would work on other aspects of healing that didn’t involve food, like sleep, stress, movement, and mental health. I chose to reevaluate my thinking. I got a health coach to help me.
With my health coach the thought, “it shouldn’t be this hard for me to make these changes; I’ve done it before!” changed to: “making these kinds of changes, when no template exists, and I am so sick, IS really hard! What’s one thing I can do this week? What feels doable?” I looked at words like “should” and asked questions like “says who?!” I acknowledged how complex this healing process is, and would continue to be. I journaled, I had meltdowns about how unfair it is. I grieved. I tried some EFT. I grabbed hold of different phrases to repeat to myself to help me shift my focus, like “I don’t have to do it all today,” and “stay in the moment,” and my favorite: “let it be enough.”
Then, recently, I learned the term “diet fatigue,” applied to people with chronic health issues (as opposed to using it to describe people on the dieting merry-go-round trying to lose weight). Boy did this fit me. I was tolerating more foods finally (far fewer ER trips, less throat closing/borderline anaphylaxis reactions), and now I had to remove more? Even knowing it could make me feel physically better, psychologically and emotionally this felt like torture. “I can’t make any more food changes.”
The chronic sense of deprivation eventually had me giving up on making changes, and I was eating foods that I knew were contributing to my inflammation, could be flaring up symptoms. But if I had no severe allergic reaction to them, I ate them anyway. Took meds to compensate. All. the. time. I often ignored my newly diagnosed hyperinsulinemia. Instead of making deliberate choices about food, I was operating purely out of my emotions.
Eventually, little shifts happened. I decided to just experiment with new recipes, to be curious about how I felt when eating different foods. The ones causing me harm, I began to eat less. I started to want to eat to feel good, instead of just eating my feelings. I try to make a deliberate choice about what I’m eating (even if it will flare my symptoms), to notice why I want the food, and that I am choosing the fallout after.
It’s a journey.
And this is a long post!
So, to be continued… including recipes I have found, helpful resources and sharing the journey as I continue to experiment with how different foods make me feel. If you want to subscribe to follow along, there is a spot to the right.
If you are a fellow spoonie, have you ever hit a wall of diet fatigue? How did you cope with it?