My Hashimoto’s Reality

It’s been 1 full year since I quit running. In light of that, I’m publishing this blog post that I haven’t known how to write for a very long time. It’s a huge dose of the truth that I’ve been hiding for a while.

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To catch you up, I have Hashimoto’s –  it’s autoimmune hypothyroidism. I’m dealing with adrenal dysfunction too, a condition where my hormone levels (cortisol, DHEA) are jacked. All of this means that, energy-wise, I’m at 50% most of the time. I gain weight spontaneously. My liver is toxic. My hormones are imbalanced (estrogen, progesterone, etc.). I usually have acne. I get really exhausted — if I walk too far or too fast on a “workout,” it takes me a few days to recover. Often, I struggle to complete an entire work day. I have foggy thinking, like early Alzheimer’s. I’m pretty certain that ultra running played a major factor in the onset of my autoimmunity and especially adrenal dysfunction… so I’m writing about all the ups and down because – as ultra running keeps catching fire, you’ll see more runners disappear and will hear of more stories like mine. It’s easier for me to write this down than to say it in person.

I turned my life upside down in the hope that I could fully heal, recover, and go into remission. The end goal is no more autoimmunity and no more fatigue from adrenals. I would LOVE to have energy back. I would love to have my life back. But the way I live now is 100% different than it used to be.

What’s it like with Hashimoto’s & adrenal dysfunction? I get angry. It’s sad. It’s like a big piece of who I was is gone and I’ll ever get that back. Maybe it sounds overly dramatic, but there is a mourning period and I’m not handling it well.

You know what kills me inside? When people – friends, family, acquaintances – tell me that I’m looking better these days. Or even better, “Looks like things are getting a lot better for you!” but here’s the truth — I am a talented liar and  I deliver Oscar-worthy performances. I will always gloss over how much pain I’m going through. I haven’t shown you how much work it is, how angry, unhappy, and frustrated I get, or how many tears have been shed over the past year and a half over this invisible disease.

My reality is that I may never be able to run again (or do any aerobic exercise), even minute traces gluten and dairy are off the table for the rest of my life, and I spend hours of every day thinking/planning/buying/cooking things to ensure that I’ll be ok. And even when I consistently do all the right things, sometimes I just end up feeling like crap anyway.

It is exhausting living like this — and this is just a short sample of the things I am concerned about every minute, day, week, and month with zero exceptions or room for error:

  • Since my liver isn’t functioning well, I use a special water filter that removes fluoride and all other chemical contaminants. This makes it extremely difficult to travel. I am particular about hand soap (I carry my own), makeup, organic food, and all other chemicals exposures every day.
  • I cook 99% of what goes into my mouth – and traveling for work makes this harder but non-negotiable. I regularly carry shrimp, coconut butter, strawberries, spinach, carrots, canned food, and a blender through airport security.
  • I spend hundreds of dollars each month of supplements and lab tests just so I can maybe feel 50%. I met my health insurance deductible in early February. I’ve popped as many as 10 pills in a single sitting. If I redirected the funds from my health expenses into my monthly car payment, I’d have a Tesla parked in the garage.
  • If I don’t get to sleep by 9:30, I have trouble functioning (thinking, waking up, not-feeling-like-crap). Sometimes it happens regardless.
  • There’s panic-hungry. If I go too long without eating, it’s when things start to shut down for me, like brain function.
  • I go through episodes of feeling “fine,”— happy, even! — but I fight depression. Once you’re in the hole, it’s a dark and miserable place to be.

This isn’t really about the running or eating at all. It’s that all of these things make me an outsider or lose enjoyment in life. I am washed over with helplessness. I’m constantly put in this position during discussion (knowingly or unknowingly), and it’s hard not to feel resentful.

“What kind of weird diet are you on now?” (Related: “Are you sure you can’t have just one?” “Your lunch/dinner looks boring.” “You’re so healthy!”)

I’m not on a diet and this has nothing to do with weight loss, nor do I call eating nutritious food that doesn’t make me feel like crap a diet. I don’t see how this is a choice when my body is destroying itself.

Going out to eat is not a treat – it’s actually the most stressful experience I endure on a regular basis. I bring my own food to restaurants, pre-eat, or lie about why I’m not eating and hope no one notices. I feel even worse when you draw attention to that fact and apologizing (that I can’t eat your/junk food) only makes it worse. I also don’t expect you to accommodate me – just let me eat (or not eat) in my own way.

“Are you having kids soon? (Why/not?)” 

This is none of your business, but know that you’re shoving the knife even deeper. Miscarriages and infertility are common outcomes with Hashimoto’s and scattered adrenals/hormones. Now you know. I dare you to ask again.

“Hey, how’s running going?” (Related: “Hey, we should all {fill in the blank with some running event}”!)

If the question about babies is a knife in the stomach, this one is a shotgun to the face every time. Even if you’re unknowingly/innocently asking. These days, a tough workout consists of getting through a day at work, walking the dog, or none at all because I’m tired from simply living, eating, blinking, and breathing. So where am I? I get left out. I can’t join in on laughs about that crazy run you just finished. I couldn’t do it if I tried, even if I wanted to. And it’s not a temporary thing, like something as fortunate as a broken leg or a sprained ankle, that I can plan ahead for “when I’m better.” After over a year of working at it with no incremental improvement – I’m just not certain that day will come.

Being around people who care about running so incredibly much (the live-eat-breathe running…. and the faster-harder-raws mentality… people who are what I used to be) is just alienating. I feel terrible for not trying harder to be compassionate when friends faced similar struggles in the past. For the people who still, for some reason, see me as a runner or an athlete, I am a complete fraud.

Honestly, it’s really hard for me to be around people talking, writing, or posting about running. I got off of Facebook and went on an unfollow spree to salvage a healthy mindset. Running was my stress relief… My exercise… My joy… My quality time with my husband… My way of being with and making new friends. Now it’s just a reminder of what I can’t do and how I can’t live any part of my life like a normal human being. This whole thing isn’t really just about running at all.

Yes. There are some positive things that I’m forced into learning on this journey…  about my health, about accepting that I’m angry, and about putting myself first for a change. About how supportive and sacrificing my husband has always been. But often it’s difficult to see those things when I try so hard every minute of every day and feel no better. It’s like a big cloudy fog that has no hope of clearing. If you criticize or dismiss anything I’ve said here, I recognize it’s because you don’t understand (but I couldn’t expect you to) or it makes you uncomfortable. That’s ok.

I hear that coming back from Hashi’s & adrenal dysfunction is just as much about psychological as physiological changes: finally accepting this “new life” and the way things are going to be – rather than holding onto what was – is a key to healing. After a year and a half, I’ve now finally had the guts to tell you what I’m really struggling with, but I’m just not there yet.

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One thought on “My Hashimoto’s Reality

  1. Katie
    August 8, 2016 at 11:59 pm

    For what it’s worth, I think you’re a freaking rock star and I am so proud of you. I know that doesn’t make any of this go away, but just know that I’m always in your corner cheering you on. Less than three always!

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