Learning to Adapt When You Have an Autoimmune Disease
I recently returned from a wonderful time in Costa Rica celebrating a friends 40th birthday. The days were hot, the afternoons were muggy and the pool was amazing. About half way through repose in Paradise my body had a phenomenal meltdown. Like Star Wars epic. I was beyond furious. Here I was finally on vacation and I was going to miss out. Why now?!
The care that I had to do for my body for the last 5 days of the Costa Rica trip really solidified something in me about how integral the parasympathetic nervous system really is. Dennis, my osteopath, has been telling me for a few years now that this hidden system in my body is one of the main players in my autoimmune ups and downs and to NOT underestimate it. The biggest re-calibration for me has been not making big changes all at once. The stress put on the body for your average bear in the woods is not the same booby-trapped experience of people who have an autoimmune disorder.
While cuddling with my husband before work we were joking around about not poking that bear. He was relating his observation that it was kind of like having invisible bear traps all over the woods. While his analogy really is how I felt for years about the meltdowns, my recent experience has evidently become more humorous because this hilarious image of a disco ball lit bear dancing around in the woods bumping into trees and bushes, rocks and wading through water, and having different lights come on depending on what she hit just flashed through my brain and it caused me to laugh out loud. But it is really like that! Here we are things that are normal for bears, and would/should be good for them causing all sorts of bizarre and seemingly random symptoms.
My bear bumped into a tree, *poof* lights up, and my skin got a rash (for 10 days!); my bear ate some glutenous pasta *poof* new light: oh look now we have stomach cramps/gas; the barista gave my bear a dairy latte (at my request of course) and *poof* *poof*: there is a loosey-goosey gas or stools; add espresso into that latte, look Mama Bear! Rosacea lights!
For years, I was angry about this, and if I really admitted it to myself, I was more like furious. Sometimes I would punish my body for not getting in line, for the sin of seemingly keeping me from having the life I thought I deserved. Other times I would feel trapped by this crazy dancing partner that wouldn’t let go and let me dance to a different dance. It doesn’t help that there are so many voices on the intarwebs telling me that gluten isn’t a thing, or that health will com or weight will be lost if I do activities that actively seem to hurt this body that I was given.
And, the real question that complicates this whole thing is: how do you really figure out what is causing an issue? What makes the lights flash? For years, I had serious menstrual cramps that I thought were normal until I realized I was popping Tylenol every 3 hours. I had seen my regular MD (who is amazing, by the way) about it a few times, and we were brainstorming. When my fiancé and partner of 13 years got into a car accident, I stopped drinking all alcohol and coffee, enabling me to be entirely present with that incredibly powerful and difficult process. The cramps went away almost entirely. As I was visiting with my barista Daphne down at Rain or Shine, my favorite corner coffee shop, I told her about my discovery. She’d had the same experience with caffeine and already knew the connection between these two things. How did she know, but my doctor didn’t? How could I have made this connection earlier for myself? How do you know who to trust? The Google is not helpful sometimes!
It is a crazy challenge to find answers to the triggering of the various areas affected by my autoimmune disease and not feel like there is a bear trap at every bend in the woods. A bear can get stressed out! Stress activates the parasympathetic nervous system. ¡No bueno!
My trip to Costa Rica really brought home that changes should be small, articulated changes. Not big sweeping ones. Big changes, even in Paradise, activate the parasympathetic nervous system and can unceremoniously freak the body into a tailspin and those crazy lights on that disco bear will light up like a frenetic Christmas tree. Getting friendly with my body lets me observe that when my body gets stressed out or too tired, it goes into a form of fight or flight mode and then it starts lighting up these little indicators of stress all over: painful joints or muscles, rashes, belly pain, headaches, itchy skin, and grouchy pouch pain. Getting the body out of that mode is much less simple than it was going in. Just the travel on the plane to Paradise caused dehydration, coupled with not enough sleep, not having access to on-diet food, completely changing environments from Oregon (cold and wet) to Costa Rica (Hot and Muggy) was enough to stress my body into an inelegant immune response.
My brain’s response was equally unhelpful: “I’m in Paradise. Why would it do it here? Aren’t I giving it time to relax? Isn’t this good for people who have autoimmune?” Our brains patently lie. Our bodies do not. This is unfortunately also true of all internet sources or the voices of well-meaning friends who do not have an autoimmune as their dancing partner telling me what I should do to fix things or to “be healthy”. The internet I found is suspect when it comes to facts, and the reliability gets lower when it comes to having any sort of autoimmune disease.
My takeaway from my trip to Costa Rica is that this dictator voice in my head and those outside opinions should be turned waaaay down, and my inner listening about what my body was telling me I needed to do turned up and, in some cases, actually turned on. I cannot measure my body, my progress or my health by some outside world opinions that can’t even manage to follow its own suggestions much less give me anything useful about being a healthy bear.
My body is telling me that it is not a polar bear or a brown bear or even a panda bear – it’s a disco bear. This kind of body is the one I was given: not my friend’s body, or the body of the woman in the movie I am watching, even if she is Wonder Woman! I need to learn to love to Disco with this partner I have and be a good dancing partner as well.
My body needs to trust me and know that I love it, and that I am not going to hurt it. And at the end of the day, isn’t being friends with your body the bona fide Paradise?
Much love,
Terradon