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

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.


Author: endosucks

Endometriosis sucks. I'm here to help. on.fb.me/endosucks twitter.com/endosucks endosucks.wordpress.com

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

  1. Thank you for this post. I came across your blog while researching my own “Difficult Decision” in Jacksonville, FL and your story is so much like my own. My life revolves around my Endo and my symptoms and I also don’t travel because of it. I haven’t seen my family back home in 3 years because I am afraid to travel and because I’ve had surgery every year for the last 3 years which eats up my paid time off. My husband and I went to JAX beach for 4th of July and ended up leaving 1 hr prior to the fireworks because I got pain. I am young (26) and I don’t know anyone else who suffers from this disease, it’s good to know that I’m not alone. I am considered among some “friends” as being flaky, inconsistent and a “canceller”. The first year, even 2 years, people were understanding, even my boss, but after so long it gets old. I get it.

    I’ve had 15 cysts rupture, endo lesions on my bowel which led to 5 hernias, IBS symptoms, pelvic floor dysfunction, and I can’t even count the number of ER visits. I had my last surgery in March (uterine nerves severed, peritoneal stripping, lesion removal, and multiple hernia repair) and I’m back to pain, staying in bed on the weekends, taking naps constantly and narcotics. I’ve been flat out rejected by 3 OBGYN’s who said they could not take on my case because I was too advanced and now I don’t know where to turn. I personally am ready for a hysterectomy but doctor’s refuse to even discuss it with me because of my age. My husband and I are very blessed with a 4 year old daughter who I gave birth to prior to my symptoms kicking into high gear, we have already decided against any fertility treatments and plan to adopt in the next few years. I have made my peace with the idea of not experiencing another pregnancy and let’s face it, it’s probably not going to happen considering I can’t even go off birth control to try because I get cysts. One of my problem is finding a doctor who will stop worrying about a mythical baby or pregancy that doesn’t even exsist and start focusing on ME, NOW. I’m ready to get back to my life and being a present and attentive mother to the child I do have and being a consistent partner to my husband.

    Wow, this turned into quite a long comment which I did not plan but it feels good to get it out and just say ENDO SUCKS. Even if no one ever reads this it’s good to have an outlet. Thank you for that and I look forward to seeing more updates and blogs.

    • Thank you so much for sharing your story. You are definitely not alone! I hope you will join the Endo Sucks! group on Facebook. We are working in our next outing and a rally, and I would love to give you a hug in person.

      • That would be great! I’d love to meet and connect with more people in the same situation. I will definitely join on FB. Sometimes I feel like a complainer, like I’m not tough or strong enough for this. Like maybe I have a low pain tolerance or I’m just crazy and it’s all in my head. I can’t even tell you the comfort I get in knowing that it is REAL (yes Dr. Drew, it is) and it SUCKS.

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