My Best-Laid Plans

10:06 AM


My entire life, I have always been a planner. In college, I'd have brief anxiety attacks if I couldn't find my day planner. I wrote out everything I needed to do, to the hour. I'd lose my mind if my friends couldn't tell me the exact time we were hanging out that night or where we were going. Even now, I color-code my Google Calendar in addition to my paper planner.

When I found out I had endometriosis, that changed.

It's difficult to plan around a chronic, painful illness when you're not sure how you will feel from one day to the next. Or one hour to the next. Or minute... you get the idea.

When your body starts to dictate the way you eat, move, work, dress and everything in between, it rules your entire life. Whether you like it or not.

In a lot of ways, I've become the person that used to drive me up a wall. I cancel plans last-minute. I bail on obligations, even though, in my heart, I desperately want to do what I signed up to do. Because of that, I fear making long-term, involved commitments that I may need to roll back later. And I hate to let people down.

With the surgery I had last November, my pain level has been more manageable as of late, leading me to sign up for everything. 

You want me to mentor young women? Great. That's totally outside my comfort zone, but I'm all about that right now. Or hey, Tracy, do you want to talk to people about your experience with domestic violence? Yes. I will do that right now. Or maybe you'd like to give a talk about endometriosis? Absolutely. Let me at it.

I will be the everything to everyone! Everyone!

 
I used to do this frequently, before I was diagnosed with endometriosis. I call myself a "chronic volunteer." If there is an opportunity out there to help, then I definitely believe they're asking me - and just me - to be the one to do it.

Taking advantage of my wellness isn't necessarily a bad thing. But even as I attend volunteer orientations or meticulously plan out a PowerPoint presentation, I worry if I'll be able to show up on the day that I'm supposed to do something.

I should sign on every dotted line with an asterisk, from now on. "*Yes, I will do this, but if my uterus hurts, I'm staying home, sry."

In some ways, endometriosis has been a good thing for my need to plan. I've become more spontaneous and more open to doing "whatever" when I feel well. It's given me less time to mull over my disease or pain or other symptoms.

But it's also made me pretty tired. And, frankly, it's been kind of expensive.


Endometriosis is a progressive disease, meaning that I can expect to feel worse as time goes on. And it's kind of hard to explain, but it's forced me to confront my own mortality, even though it's not a terminal illness. Maybe a better word is that it's forced me to confront my "able-bodiedness." (It's a word now, if it wasn't before.)

My husband, Andrew and I planned out a vacation this summer. Since we're avid concert goers, we try to do a vacation one summer and then a music festival the next. 

After we booked that vacation, I found out my favorite band of all-time, U2 (don't hate) is going on tour.

Now, I like to think of myself as a fiscally responsible person, to the point of nearly being financially neurotic. I've gotten better about it over time, but I used to refuse to spend money on myself. So when I saw that U2 - a band that's "getting up there" in age - would be touring, I jumped on the tickets, even though I immediately grumbled about how "irresponsible" I was being because we just planned a vacation.

But I'm not promised a healthy body next year or even next month. When I was diagnosed with endometriosis at age 24, I immediately developed a feeling that I was running out of time. There will likely come a day when I can't hike through a national park or dance for three hours at a concert. And it will likely be sooner for me than it will be for most people.

Already, I have difficulty walking some days. The sciatic nerve that goes from my left hip through my left knee is the source of much of my pain, and when that flares up, even moving around my home can be difficult.

At the grocery store with my husband this week, I hunched over a shopping cart like my 100-year-old grandfather does over his walker. (He really is 100.) I dragged my leg behind me and periodically made pained expressions while shooing Andrew away when he offered to take the cart.

When my song comes on in the club
Andrew and I want to travel and share experiences while I'm healthy and while my episodes of limited mobility are infrequent. We want to do things now before I find out I have yet another autoimmune disease or need another invasive treatment or surgery.

But in addition to that, my health has interfered with every other major life plan that one could have.

Do I want to go to grad school some day?
What do I want my career to look like?
Can I ever travel internationally?
Should I take up this two-year commitment?
Am I physically able to ever be a parent?

That's when it gets even harder to plan. When my goals cost serious cash or dramatically impact another person, I have to pump the brakes and think hard about it. Yes, I can't let everything take a backseat to endometriosis, and I absolutely don't. But there has to be a point in which I'm honest with my limitations.

This may seem like a downer of a blog post, but I assure you that it isn't for me. If anything, it's made me more appreciative of my good days. It's what pushes me to exercise, leave my house and try new things when I feel well enough.

When you feel like your days are limited in a way, you start to live a little more.

Because of endometriosis, it will probably be a little bit of time before Andrew and I stop renting and buy a house. I will probably never be a parent (my likely infertility and discomfort around children aside.) I may not be able to fit in all of the things you're "supposed" to do before you turn 40. And my planner may be filled with more "suggestions" than obligations, now...

But, at least right now, I don't feel like I'm living a limited life. As much as I wish I could plan like the next person, I know that none of us are guaranteed tomorrow. There's a tendency to feel invincible in your 20s that I've never truly felt, and in a way, I'm thankful that I learned it earlier rather than later.

So until endometriosis does take away my ability to do the things I love, I won't let it. And when I have to rip up my best-laid plans, I will try my hardest to limit my anguish, self-blame and disappointment. Because I know that I'm doing everything I physically can at the moment, while learning to take care of this sore and fickle body.

So yeah. Remind me I said all of this next time I have to text someone "Sorry, I can't make it."


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11 comments

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