And For My Next Trick...

10:47 AM

On good days, I get to be a rock star.
I've heard before that chronic illness is a full-time job, except without pay or any sort of benefits whatsoever. I'd buy that. In fact, you get a nice assortment of careers with endometriosis: detective, researcher, advocate, dietitian, wellness expert and, of course, your own personal life coach.

But I'm here to talk about a specific job that endometriosis has gifted me: illusionist.

It's not even just tricking everyone around me into thinking I feel well when I absolutely don't but absolutely have to. It's also tricking myself into believing everything is fine when everything isn't.

Do not try this at home.

Lately, my role as an illusionist has been a 24-7 commitment. As I mentioned a blog post or two ago, my symptoms seem to have changed, and since I won't see my doctor until next week, I've been doing my best to cope. Or, you know, straight-up ignore said symptoms.

I've recently started experiencing pain before I even wake up, which is just downright cruel. Shouldn't that be the one place endometriosis leaves me alone? I mean, I didn't even know this was a thing.

But sure enough, around 3 a.m. every single night, I start to hurt. And then I wake up in the morning and realize it's actual, real-life, happening-right-now pain, not just some terrible dream pain. But I crawl out of bed - with some help from a dog who really wants to go outside - and tell myself that everything is just peachy.

I won't walk you through each and every one of my new symptoms, but I'll say they've been really unpredictable. The hardest to deal with, as I often say, is the fatigue. I've faced that for a long while, but it's been exceptionally irritating lately, especially when I just don't have the mental energy to even talk some days. (AND I LOVE TO TALK.)

Despite this uncontrollable fatigue, I often try to trick my body into thinking we have all the energy in the world! And that even on days when every flashing red light is going off inside of me, hey, everything is fine. Because we have things to do, and I don't have time for this.

Lately, that's shown up at the gym. I've been working really hard to stay in shape, endometriosis be damned, with varying results. Part of this is an effort to stave off some of the pain, manage my other symptoms and also keep my scoliosis from getting worse. It's also because I'm delusional and believe that even with endometriosis, I can have INSTAGRAM-ABLE ABS.

Oh hey, Thor... <3
I'm pretty happy with where I am right now, but it's taken a WHOLE LOT of work to get there. Pain and fatigue have disrupted my gym routine countless times, and when that happens, I'm pretty hard on myself. Even though I can't control my disease, part of me still likes to think I should be able to do so.

At my worst, as I've mentioned in previous posts, I drag myself to the gym when I don't feel well. I try to work out whenever I feel okay (like above a 6 or a 7 on a scale of 1 to "I'm definitely dying"), so that I can balance out those bad days. But sometimes, my illusionist self thinks it can do more than it actually can.

This happened a week or so ago. I was frustrated with a few different aspects of life to begin with that day, but I insisted that my husband, Andrew and I go to the gym anyway. I wanted to blow off steam, I hadn't done a great job of exercising the weekend prior, and I needed something I could control to regain my sanity.

Joke's on me. I don't "control" anything!

About ten minutes into being on the elliptical and watching my beloved Property Brothers, my brain went into "screw it" mode. 

[Why can't I find a gif of Jonathan taking a hammer to a wall or something?!]

"What am I doing here?" I thought. "Why am I doing any of this? It's pointless. As soon as I feel sicker, I'll have to stop working out, and my body will go right back to where it was. None of this is worth my time. I can't manage my symptoms, my disease is progressive, and it doesn't even have a cure, so why am I bothering?"

I realized I didn't want to be anywhere except curled up in a ball at home. I got off the elliptical and went to find Andrew.

When we got home, I broke down into tears. I'd had a stressful week to begin with that was further complicated by just how awful I was feeling. I ranted to Andrew how I didn't want this to be my life, how I was so scared this was as good as I was ever going to feel, how I knew there were only a few treatment options even available to me, and how eventually I'd run out. How I'd need to go into surgery again at some point, how that wouldn't even matter because the endometriosis would grow back again, and how oh my gosh if we want kids some day how will we ever afford fertility treatments or adoption or anything.

This quickly led into my next spiral, which went something like this: "I don't want people to think I'm sick. I don't want to look sick or be sick or anything. I don't want it to get in the way of me doing things that I want to do. I don't want to disappoint people or let them down or miss out on things or-"

Andrew interrupted with "Why won't you just accept that you have a chronic illness?"

He wasn't accusatory or mean or exasperated at all. He said it in the most loving and kind way imaginable. By saying this, Andrew told me that it was time for me to give myself permission to be sick.

You would think that I'd done that already, given this blog and how vocal I am about endometriosis. And when I'm mentally at my best, I do a good job of accepting my illness. But when things get bad, I start to resent my body, as if being angry will change my circumstances. When, really, it probably just puts more stress on my body and makes me feel worse.

The truth is that my inner illusionist tries its hardest with myself. I try to outsmart my own disease, forcing my brain to ignore what it needs some days so that I can travel, run errands, exercise or sometimes do really dumb, pointless things just so that I feel personally accomplished that day.

I've never been good at allowing myself to rest or take any sort of break. Just look at how many days off of work I don't take, and you'll see that I do not make time to just relax and exist and, you know, be a person. I see it as idleness or laziness, rather than an essential part of managing my illness and my sanity.

If you've been following my blog for a bit, this isn't news. It's a constant struggle of mine, and I'll probably come back in four months (or less) and write a similar blog post to this one. But hopefully by typing it all out, I'll force the illusionist to take a vacation and let my body take its own mini holiday.

In chatting with one of my college friends the other day, I reminisced about an old redheaded heartbreak. (There are actually two from my college years. This one is the latter of the two. Hah.) I said, "It's good we never worked out. I really don't think he'd ever accept my illness." But how can I expect other people to accept and understand endometriosis when I don't even let myself do it, most days?

This isn't a message to me and other people with chronic illness to just give up on ever feeling well, forget about going outside and stop trying to take care of yourself. Not at all. This is permission to feel like complete crap. Permission to spend days in a row on the couch. Permission to cry and be frustrated and then watch HGTV re-runs all day because endometriosis is terrible. Permission to let yourself be sick. And permission to do all of that without guilt.

You spend so much of your time managing your chronic illness to begin with. Let's cut out the magic tricks.

And here's another gif of attractive men to send you off.

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