A place for endometriosis survivors & supporters, and all that goes with it.


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Guilt over not participating in my own life (or at least Star Wars Weekend)

Can I just vent for a minute?

I am really getting down and sick of how unpredictable and uncontrolled my endo and adeno pain is. I am trying to live any sort of social life but end up just going to work, surviving, going home to sleep, and repeat. And I’m getting upset over ridiculous things. Tomorrow, for example, I have been dying to go to Star Wars Weekend at Disney in Orlando, especially since this is the last weekend of the year and Mark Hamill and Billy Dee Williams will be there. I have been talking it up and getting excited. Today, I wake up and I am beyond thrashed. Well, I say wake up, but I really mean “have several short naps from 3 a.m. to 2 p.m. and finally pour myself out of bed and stumble around the house like a zombie.” Hell, I’m still in pajamas right now! I haven’t even taken anything for pain, even though I’d like to! I am trying to work myself up to go out to have dinner at 7, I can hardly fathom getting on the road at 7 a.m. to spend the day in the heat in Orlando and drive back that night. And what about my pain management? I am back to rationing my meds each day, and the codeine I’m sorry to say is not really effective. It’s a difficult admission. So I have people here and in Orlando that know I *might* come, but I might not, and it affects not just me because there’s getting the dog cared for, and making sure I have clothes I can actually wear through the day, and staying comfortable. I just don’t know. I’m exhausted at the very thought. Another opportunity for fun, probably down the drain. Another year of planning to go, gone.

The pose on this statue by Rodin just cries Shame to me. Image found via Google Creative Commons.

Statue by Rodin, image found via Google Creative Commons.

I already had to decline the wedding invitation of a friend I’ve known for 20 years because I’d be in Chicagoland alone, and with as weird as my pain has been, I can’t risk being stuck in a hotel room or banquet hall and not able to get around, or not be able to wear pants, or swell up to pregnancy size. Or worse, being in total incoherent pain and not able to care for myself, or get back to my hotel, or having to explain myself to someone there, spending the money and not being able to go or drive safely, and and and … I just can’t risk it.

I know I get stuck in this cycle of making decisions based in a place of fear. But I feel like I’ve done a hell of a lot pushing through my pain, especially college and beyond. Now I feel like it is catching up to me. And I feel such extreme guilt over not being able to do participate in my own life. It can’t be healthy.

These aren’t the first events I’ve had to sacrifice in the name of endometriosis. I guess they won’t be the last. And that is infuriatingly sad.

I wish very much that I could just make decisions and go and do and not have a million “ifs” and items to tick off the list. Isn’t that what normal people do? They get to go and do things and not have their pain sitting on their shoulder (or anywhere else, for that matter), guiding their life experience? I can’t be the only one who feels like this.

Maybe I’m finally getting to a point of making that Very Difficult Decision.

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Staying home: Damned if you do, damned if you don’t

AH, MONDAY.

Fuck you.

Normally I would have already been at work (my days off are Thursday and Friday), but I took Sunday off for the wedding party (which I missed) and Saturday off because of how I was feeling (and because it was already on the books, for some reason).

Last night the pain was bad enough that I was using the down-on-all-fours labor position, breathing through it and getting light-headed. I took a pregnancy test to rule out ectopic pregnancy (negative), and decided to call the gyne today if it continued.

So while I’m able to be a mostly upright human being today, my head is splitting open and I am unsure of how bad things may get today. I can already feel that bone-deep pain creeping down my legs, so my guess is “not awesome”.

And there’s a presidential debate tonight, so I know I’m going to want to fall over before the night is through.

And then, what should be a ray of hope: Boyfriend has mistakenly been given today off. Boyfriend offers to work my shift so I can stay home on FMLA.

Problem, you say? What problem?

Well, there’s guilt: we are beyond short staffed at work and can use everyone. Plus, why should he have to cover me because I have cramps? And I feel like I’ve abandoned the rest of the crew.

There’s fear and shame: Last week was so bad I tried to stand up to talk to a boss and almost fell over. This prompted many questions on his part that I was flustered, and I could have dodged but decided “oh fuck it” and told him the truth. Then he looked flustered. And I am afraid of getting so bad, like I used to, that I have to be taken home, or have people asking me all the time what’s going on and looking and feeling like shit at work, where I am supposed to be strong and indifferent.

So where does it stand? I’ll probably post this, and then get in the shower and go to work, like a good little soldier. Don’t expect me to dress nice, though.

What about you? What does it take for you to stay home or back out of events? How do you feel about it?


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The Red Menace & the Baby Bait-n-Switch

The Red Menace is coming for you!

Has this ever happened to you?

You’re minding your business, trying to enjoy life mid-cycle, when weird symptoms hit.

You’re nauseated.
Your breasts hurt.
You have pelvic aches and pulls.

It starts lightly at first, and you think, “OK, my body waited ’til my mid-20s to participate in PMS, but here it is.”

It goes on for a few days.

Then you’re sick in the morning. And it goes on for more days. And a few more.

Then it’s two weeks of nausea, headaches, pain, peeing constantly … but no cycle. And suddenly those little barbs to the boyfriend about “maybe I’m pregnant” just aren’t funny any more. Because god damn, what if you are pregnant?

You go back and forth about how to respond. “This has happened before,” you say. “YOU ARE KNOCKED UP” your body says. “My cycle is irregular anyway, I shouldn’t worry about being a few days off my expected Day 1,” you say. “HELLO, YOU’RE PREGGO!” says the soreness. And so on.

JESUS CHRIST IS IT PREGNANT OR NOT PREGNANT ALREADY!?

After two weeks or so of late cycle, pain and sickness, you’re convinced that you are pregnant. Surely you must be. But you’re not. Right? You’ve charted everything. It’s physically impossible. But it could be possible. Right? Or not?

ANSWERS PEOPLE I NEED ANSWERS

So you finally take a pregnancy test. You count the seconds out loud, and watch your phone’s clock anxiously. Thirty seconds turns into three minutes turns into eternity.

And guess who’s pregnant? Continue reading